tag:blogger.com,1999:blog-30609383507919363552024-03-14T00:51:51.693-07:00Jumping Out of the Fishbowl - An Autistic LifeMy name is Zoey. I'm a social worker with big dreams. And oh, I'm autistic. This is my life.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-3060938350791936355.post-19214630741778238872019-11-27T10:30:00.000-08:002019-11-27T10:30:16.626-08:00Elsa, "Into the Unknown" Power of Not Being NormalWhen Disney released Frozen in 2013, it was more than just a family-friendly box office hit. It created a firestorm about the stories we tell and the characters we value. And Elsa, the central character, became an instant icon of the Disney canon. While the Snow Queen of the original Hans Christen Anderson tale was a villain, Elsa in Frozen makes a powerful journey from shutting people out because she feared how she affected them to opening up to those she loves and accepting her inner nature. Even in the conception of the film, “Let It Go” transformed from a villain song to an empowerment anthem worthy of celebration. (Not to mention the go-to song for so many toddlers it created feelings of overkill on James Cameron’s Titanic-levels.) And in the end, the true villains were the fear and demonization of the different.<br />
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A lot has been said about Elsa as a character. A rare Disney female character without a love interest. A rare Disney female character who is defined by her relationship with family, particularly the women. An even rarer Disney female queen who isn’t some kind of evil. Many people have taken Elsa to heart as a personal heroine and power media figure. Google “Elsa Frozen thinkpieces” and there will be a bazillion articles about her being a stand in for the LGBTQ experience. I understand and respect that take, although the original didn’t affect me in some profound way upon its release.<br />
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The 2019 sequel though? That hit me to the core of my very being.<br />
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The last time a film did that to me was the 2016 Pixar movie Finding Dory. Like Finding Dory, I spent the entirety of Frozen 2 with tears streaking my face. Like Finding Dory, it spoke to my experience as an autistic person. And like Finding Dory, <a href="http://jumpingoutofthefishbowl.blogspot.com/2016/06/fishy-feels-how-dory-does-disability.html">I felt the immediate urge to write about the millions of feels I had about what this movie meant to me</a>.<br />
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So like Elsa, let us journey “Into the Unknown” together. (And of course, spoilers here on out.)</div>
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If the first Frozen film is about giving up the fears of what makes someone different, Frozen 2 is about exploring the things that make someone different and truly understanding and embracing it in the process. Elsa is openly exercising her ice powers and is beloved by her family, friends, and kingdom yet she still feels uneasy, not completely confident in herself both as a ruler and with her powers. A mysterious voice calls out to her, and when she responds her kingdom is unexpectedly hit with natural destruction forcing everyone to evacuate. Convinced she’s awoken natural spirits from childhood tales and needing to face them to save the kingdom, she embarks on a quest to find and appease the source of her kingdom’s trouble with her sister Anna, sister’s boyfriend Kristoff and his pet reindeer Sven, and surprisingly not-annoying snowman Olaf in tow. And in the course of that journey, she learns her own unique powers and family could very well resolve that conflict between nature and man altogether.<br />
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Elsa’s journey of self-discovery and fully understanding and accepting her power within mirrors my own journey with my autism. Like Elsa and her powers, I was born autistic. Like Elsa, I grew up knowing but not understanding how not normal I was. Like Elsa, <a href="http://jumpingoutofthefishbowl.blogspot.com/2014/12/diagnosed-at-two-told-at-thirteen.html">once I finally had a name for not being normal I felt shame for it and the constant need to hide it to prove I was a good person</a>. Ironically the year Frozen came out in theaters, I started to openly embrace the autism label and share it to those beyond my inner circle. Like Elsa and her powers, I’ve been learning more about what autism means to me, to others, and the world to assert my place in it and owning it to empower and help myself and others. And like Elsa, I’m making my differences my life’s work.<br />
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It’s not an easy life nor an easy road. Any autistic person can tell you their lives aren’t a cakewalk. Having grown up and still mostly around non-autistic people, I am keenly aware of how different I am and shaming myself to “conceal, don’t feel”. Even now I struggle with radical acceptance of my autism and my own limitations versus the constant need to prove I’m worthy in spite of autism and pushing myself to fit in practically to breaking point. I’m constantly told people admire me both as a person and my work as a social worker and active disability advocate. I’m also constantly told I have unreasonably high expectations of myself and it isn’t weak to ask for help when I need it. I like to think I’m getting better in unapologetically owning who I am but I don’t know if I’ll ever fully get to that radical self-acceptance.<br />
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Tennis star Arthur Ashe once said, “success is a journey, not a destination. The doing is often more important than the outcome.” It seems hackneyed but it resonates for a reason. I don’t know if I’ll ever be fully unrepentant about my autism but I’m working on seeing its strengths in me and using it for both personal and the greater good. Frozen 2 is about Elsa learning the strengths in her magic and using her magic for personal and the greater good. That magic heals, empowers, and brings peace to everyone in the film. And maybe my autism can heal, empower, and bring peace to people. There is power in not being normal, and if channeled well it can make and set things right. It worked for Elsa, maybe it’ll work for me and more.<br />
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If we “let it go” and open ourselves to journeying “into the unknown” in accepting everyone’s differences, we can truly show ourselves and our power to make the world a better place.</div>
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Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com2tag:blogger.com,1999:blog-3060938350791936355.post-33141253966478464792019-05-12T14:48:00.002-07:002019-06-07T22:27:32.921-07:00An Ode to Mentors - How A Compassionate LCSW Changed My Life<div class="separator" style="clear: both; text-align: center;">
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A lot has been said about the importance of mentors. Mentors are meant to guide you through life in personal, professional, and other means by setting an example and giving advice and a leg up on where you need to go. There are plenty of mentors who can get you through the basics, but the best mentors take you for who you are and help nurture and enhance you to become a better person to make an impact on the world.<br />
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I can't think of a better example of this than my own mentor through the social work and disability world than my first social work supervisor and boss, Linda. Linda's guidance and advocacy has not only given me professional consul and direction, she proved to be an amazing example of what a disability ally can be.<br />
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In May 2013, I was a part-time graduate student at the USC School of Social Work looking for places to practice the craft I was learning. In my search, my therapist suggested I contact to one of her colleagues who worked at an organization specializing in serving developmentally disabled people. When I called the therapist in question, she had moved on to private practice but she suggested I call a woman named Linda. I got a hold of Linda and we agreed to meet at a synagogue that hosted the organization's social skills and support groups. We sat on a bench outside the synagogue’s classrooms and I told her about my interests in volunteering with them and my goals as a social worker in advocating and working with the developmentally disabled. And in a random slip of the tongue, I disclosed my own autism diagnosis to her.<br />
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I don’t know how the words “I’m autistic” left my mouth in that first meeting. These were two words I had spent a lifetime avoiding saying unless in the direst of circumstances. Yet I told a complete stranger it on the fly while trying to sell myself as a volunteer. As soon as I said it, I immediately was struck with terror with how Linda would receive it.<br />
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That accidental disclosure turned out to be the best thing I ever did. And it was because Linda decided to take a chance on me.<br />
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Linda listened to my interests as a volunteer and I took to the placements assigned to me to heart. I assisted in group therapy, I supported adult transition staff in their young adult program, and took care of any office work needed. I threw all I had into every assigned task and getting to know everyone in the organization from staff to clients. And through my work, Linda allowed me to intern there for my final year of grad school and guided me through the programming, administrative, and advocacy elements of social work I focused my studies in. Linda took me through all the services the organization offers, let me help create new ones, communicate with large systems, plan and administer conferences, and took me to regional center meetings to learn about laws, policies, and practices of the world they are part of and encouraged me to take every leadership opportunity possible. And after all of that, she hired me after I graduated in 2015 to continue the work she trusted me with.<br />
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Like many autistic people, I spent a lifetime feeling I’ve had to battle the world to have a place in it. Even with supportive parents and teachers, I felt I needed to go above and beyond for a place at the table inherently off-limits to me. And I fundamentally believed I couldn’t count on anyone to understand my wants or needs and outright dismiss me for even having needs. Linda directly challenged all my preconceptions by letting me in. She challenged them by giving me a chance. She challenged them by listening to me. And she challenged them by inherently believing I have the potential to do what I want and be who I want to be.<br />
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Linda has since retired from the agency and now supervises me as I work towards obtaining my social work license. She continues to guide me as both an individual practitioner and as an advocate.<br />
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When people talk about disability acceptance, there is a tendency for the non-disabled to verbally agree with it but failing to actually execute it. Even those with the best intentions can sometimes make assumptions about how much ability a disabled person has and indirectly limit them based on it. Linda is not one of those people. When Linda talks about accepting the disabled, she acts on it. She knows every person is a complex human being and is worthy of respect, dignity, and having the ability to be the best they can be. My relationship with her is my greatest proof of that.<br />
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I owe so much to Linda and am greatly indebted to her. I hope I can be as giving and carry on her legacy in my own work.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-8451591150298375862018-04-11T16:57:00.000-07:002019-06-06T21:31:41.575-07:00I'm a Complex Human Being, Dammit! or Identity- vs Person-First LanguageOf all the things making up human beings, I'd say a strong identity is the most important. Psychologist Erik Erikson agrees, <a href="http://www.simplypsychology.org/Erik-Erikson.html">making that the crucial stage in his theory of psychosocial development</a>. Erikson argues that while adolescents are growing and changing into physical adults, they have to grapple with what social roles they'll take and how they'll define themselves in the world. This leads to someone either developing a strong sense of self or causing major uncertainty of where they fit in, known as "role confusion", that could lead to an "identity crisis" of who they are. All of this is dependent on if that person is encouraged or discouraged by their family, peers, and society at large allowing them to explore different possible identities and accepting their conclusion.<br />
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I bring this up because there's a lot of controversy over what people call those on the autism spectrum. Autism is a neurological condition that affects social development, making Erikson's psychosocial development model a lot more complicated over how to recognize autism being a part of one's identity. It could be said autism as a concept is in the adolescent years of "identity vs role confusion", as people argue over whether it should be considered an social identity (aka "identity-first") or something separate from one's overall characteristics (aka "person-first").</div>
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<b>Again, I would like to reiterate that my feelings on my use of language concerning autism are my own and I won't dictate what others should do. I'm only using these posts on autism language to express why I feel that way I do and why I do what I do. I'm not gonna tell anyone how they should talk about autism because it's not my place to do so and I don't want people angry with me over it. This is just how I personally feel.</b></div>
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With that in mind, let me explain why I prefer "autistic people" over "people with autism".</div>
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<a name='more'></a>When I started sharing this blog with people, I got comments from family, friends, and even professionals who weren't comfortable with me using autism as an identifier and not a separate qualifier. They told me that autism shouldn't be the sole definer of who a person is and that using it as a social identity reduces that person to a specific thing that doesn't fully recognize that person's complexity. The argument is that autism may be a diagnosis, but it doesn't truly convey who that person is as a rounded individual. In short, it's my argument from <a href="http://jumpingoutofthefishbowl.blogspot.com/2016/11/autistic-language-what-functioning-even.html" target="_blank">the "functioning" post</a> that people shouldn't be put into neat little boxes because it limits who they are as a whole. The disabled pioneers of disability movement used person-first language for that exact reason - we're people, not the disability.</div>
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My argument against this is people are complex because there are <i>many</i> things that define who they are. A person can identify as multiple things because <i>no one person is just one thing</i>. People experience the world through various factors like race, sex, religion, gender and sexual identity, economic background, and more. Disability and mental illness are part of that experience and I think dismissing them as being secondary isn't giving credit to them as a major factor of how the disabled and mentally ill see the world and themselves in relation to it. This is especially true if they also aren't part of the accepted majority in other areas - i.e. straight wealthy cisgender Protestant men.</div>
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Furthermore, in a world where socialization is key in how people relate to each other, autism is a major influence in how someone operates. The autism diagnosis is defined by its affect on someone's ability in meeting developmental milestones in social skills, communication, and behavior. All these things shape how they interact with the world and how the world reacts to them. Given all of this, I'd argue it's impossible to separate the diagnosis from who someone is. If people are expected to behave and communicate in certain ways as social creatures, how does someone acting outside the accepted norm not inform who they are?</div>
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This isn't to say I think autism should be the <i>sole</i> identifier of a person. As I've said before, people are complex creatures that wear many hats. Being white, cisgender, female, Jewish, and heterosexual all inform me as a person and my experience of the world as much as autism does. But my trouble with getting the accepted social behaviors and controlling my more negative emotions have affected my education, my social life, and my understanding of how the world works as much as my gender, religion, race and sexuality do. These elements cannot be easily separated from who I am as a human being. Autism isn't the only thing I am, but it is an important enough thing for me to fundamentally not know who I'd be without autism. </div>
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At the end of the day, I honestly don't care how people use autism to describe me. I'm not gonna tell someone off for describing me and others as a "person with autism" or "autistic person" because I know people get sensitive about it. But I want people not tell me off for believing autism is an identity than something separate. I am many things and autism happens to be one of them. It's not a bad thing, it just is.<br />
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I won't judge you calling me someone "with autism". Just don't tell me I have to describe myself as you do.</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-10534389675114373222017-10-09T09:19:00.001-07:002017-10-09T09:19:59.290-07:00Practicing Self-Care in Stressful TimesIt is a universally acknowledged truth that stress is an inescapable part of life. Stress can come from anywhere at any time, and it's always a pain in the ass. I don't know anyone who enjoys being stressed out, and anyone who says otherwise is flat-out lying. But what matters when it comes to stress is how you deal with it. You can either let it consume you or you can manage it in whatever way you find best de-escalates it. (You can also shrug off anything that might give you stress but that will tend to come back to haunt you.)<br />
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I've been trying to find out how to do that second part for all of my life. But I know one thing is always reliable - caring for myself is critical to ease stress and prevent it from consuming me. And nowadays, I feel the need to engage in self-care more than ever before to maintain my well-being.</div>
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To say that stress doesn't affect me is a complete fallacy. If anything, I will flip out at any sign of the smallest trouble. My go to mode is one of panic quickly overwhelming me and jumping to conclusions of the worst possible outcomes. I'm a perpetual Chicken Little - something comes up and no matter how small the issue I will run around screaming that the sky is falling. And no amount of people telling me "Zoey, calm down - things will turn out fine" will ease the chaos in my mind.</div>
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Okay, I exaggerate. But I do know what can help me out. In fact, I've known what can help me out since I began my graduate studies in social work. A concept called "self-care".</div>
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Self-care is exactly what it sounds like - caring for yourself. This can take many forms in mental, physical, and various other activities to keep yourself emotionally collected. Exercise and healthy eating are among the most recommended activities for self-care (besides being beneficial for physical health), but smaller activities like meditating, taking a bath, and cleaning also can calm people down when feeling stressed. There are as many articles out there about self care as there are methods of self care - a few examples can be found <a href="https://www.buzzfeed.com/anthonyrivas/little-things-to-curb-depression?utm_term=.syq4QVK99M#.ijyj7BzPPd" target="_blank">here</a>, <a href="https://www.psychologytoday.com/blog/shyness-is-nice/201403/seven-types-self-care-activities-coping-stress">here</a>, <a href="http://tinybuddha.com/blog/45-simple-self-care-practices-for-a-healthy-mind-body-and-soul/">here</a>, and <a href="http://www.jenniesteinberg.com/100-strategies-for-self-care/">here</a>.<br />
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Trying to engage in self-care in this time has been particularly hard in this time for me. Usually I can escape into the world of celebrity gossip as frivolous fun, but as more celebs become politically outspoken I am reminded of the stressful state of the world. Checking my social media feeds have also proven futile as they have turned into cesspools of political meltdowns. I also currently split my work time between keeping up with disability developments, social media maintenance for work (hence not looking at Facebook and Twitter is not possible for me), attending as many community events as possible, and now working directly with clients. I have a full plate and not a lot of spare time to take the mental breaks I need.<br />
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My go-to method of self-care usually involves escaping into different mediums to avoid dealing with reality. Entertainment is a particularly favorite realm of mine - I'm always searching for new music to listen to <a href="http://jumpingoutofthefishbowl.blogspot.com/2015/06/music-is-my-boyfriend-my-girlfriend-and.html" target="_blank">(which I discussed my attachment to here)</a>, reading books on my Kindle, rewatching favorite YouTube videos, and binge-watching favorite and new movies and television shows. I also have the tendency to delve deep into my imagination, pretending I'm living in a different world and reenacting it when I'm alone. Engaging in these activities provides some relief, but I can't image absorbing myself in them is particularly healthy for too long. There's a difference between enjoying frivolity during downtime and letting that frivolity dominate your life. And at the end of the day, I'm aware retreating into escapism won't always assuage the stressors of life.<br />
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This is where I'm constantly reminded of the importance of practicing self-soothing thoughts. Often called "mindful meditation", this involves curating self-love and self-compassion by reflecting on the positive things in one's life and person, releasing negative thoughts in healthy and constructive manners, letting go of things one can't control, and reminding oneself of their individual strengths and power to make the best out of life. Mindful meditation is not easy - engaging in these mental exercises are particularly tough for me <a href="http://jumpingoutofthefishbowl.blogspot.com/2016/05/how-do-you-handle-autism-anxiety-and.html" target="_blank">given my tendency towards spiraling into depression</a>. It's perhaps my greatest challenge in life to let go of the negative thoughts and feelings clouding my current worldview and sanity. Every day my family and therapist implore me to reflect on the good qualities I have and what I do to keep trucking through the world. I do the best that I can but it's a process. I don't know if or when I'll get to a place where I can self-soothe naturally, but all I can do is try and that's half the battle.<br />
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During a recent session with a client, the client expressed their stress over a recent bout of horrible events in the world. They were beside themselves absorbing the impact of news and confided fear about how it would directly affect their life. I know that fear too well, but attempting to be a source of strength for them I said to them the following:<br />
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"There are things that we simply cannot control. We cannot control what happens in the world - we can't control natural disasters, we can't control violence others commit, and we can't always control what happens in the political sphere. But what we can control is how we live our lives. We can control what we do every day and how we look at ourselves and the world we live in. At the end of the day, we can only control ourselves and that's how we can ensure that we'll get by okay. What happens will happen but we can do the best we can for ourselves to make the best happen to us."<br />
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As shocked as I am to find myself being able to say that, I'll admit it's pretty sound advice. No matter how big and anxiety-inducing as the world can be, we have the power to shape how we process and operate in it. We can either let worst get to us and give up or we can reconcile with it and power through. It all comes down to how we take care of ourselves in what we do and what we think.<br />
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Now let's all put that into practice.</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com2tag:blogger.com,1999:blog-3060938350791936355.post-91287505028183146432017-08-07T12:09:00.000-07:002017-08-23T06:22:11.507-07:00Watching Myself On Screen, or The Current State of Autism in the MediaWhen I was young and was unaware of my autism diagnosis, I only knew about autism through a Baby-sitters Club book. The book, entitled <u>Kristy and the Secret of Susan</u>, was about one of the titular "baby-sitters" taking on a non-verbal autistic charge and I honestly don't remember much about it, except that the main character Kristy decides to leave her autistic charge Susan alone after unsuccessfully trying to force her to integrate with other kids. I didn't much care much for the book at the time despite being a big Baby-sitters Club fan, and I'm sure if I read it now I'd be appalled at how the characters were written and treated. Either way, I didn't have a reference point as to what autism was because I didn't really have that much exposure to it in media. <a href="https://jumpingoutofthefishbowl.blogspot.com/2015/04/my-pop-culture-autistic-journey.html" target="_blank">I had characters that I liked and related to</a>, but none that felt especially representative of me as an autistic girl.<br />
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I think it's safe to say that the days of autism being a non-entity in pop culture are coming to an end. Since diagnoses have risen in the last twenty years, movies and television have slowly come to recognize and insert autistic people as characters. Various television shows like <a href="https://www.themarysue.com/girl-meets-world-farkle/" target="_blank">Girl Meets World</a>, <a href="http://abcnews.go.com/Entertainment/sesame-street-julia-muppet-autism-makes-appearance-show/story?id=46703516" target="_blank">Sesame Street</a>, <a href="https://www.buzzfeed.com/emilyorley/how-parenthood-broke-down-the-autism-awareness-barrier" target="_blank">Parenthood</a>, and <a href="http://uproxx.com/tv/abed-community-exploring-aspergers/" target="_blank">Community</a> have featured characters explicitly stated or implied to be on the autism spectrum. <a href="http://www.imdb.com/title/tt2140479/" target="_blank">The 2016 crime thriller "The Accountant</a>", starring Ben Affleck as an autistic accountant was a unexpected box office hit and i<a href="http://deadline.com/2017/06/the-accountant-sequel-warner-bros-taps-ben-affleck-gavin-oconnor-for-the-accountant-sequel-jon-bernthal-also-likely-1202120025/" id="id_5ed9_ccbb_4c03_8a5f" target="_blank">s green-lighted for a sequel</a>. And this August, Netflix will premiere a dramedy about an autistic teenager looking for love called "Atypical":<br />
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It looks as though we're getting to a place where there is real case for meaningful autism representation. So why do I feel that we could do better in portraying autism as a whole?<br />
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I think the place to start in looking at how autism is portrayed. From <a href="http://www.imdb.com/title/tt0095953/" target="_blank">Raymond Babbitt in Rain Man</a> to <a href="http://www.autismdailynewscast.com/the-big-bang-controversy-is-sheldon-autistic/441/guest/" target="_blank">Sheldon Cooper on The Big Bang Theory</a>, the most well-known autistic characters are white men or boys. Guys being diagnosed with autism is not exactly unrealistic - the Centers for Disease Control and Prevention (CDC) currently estimates that autism is 4.5 times more common in boys than in girls. But growing research into that diagnostic gender and racial disparity is highlighting that we might need to rethink how prevalent autism actually is and how it affects different people.<br />
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<a href="https://www.forbes.com/sites/quora/2017/07/25/why-are-autism-symptoms-different-in-women/#76358a1326b7" target="_blank">Autism presents itself much differently in women and girls than boys and men.</a> Numerous studies find that <a href="https://kirstenlindsmith.wordpress.com/2014/07/08/research-wising-up-to-the-fact-that-girls-present-differently-than-boys" target="_blank">autistic women tend to be more socially adept than their male counterparts</a>, masking their symptoms <a href="https://www.scientificamerican.com/article/autism-it-s-different-in-girls/" target="_blank">either as a chemical reaction in the brain or a response to societal pressure</a>. Rates of co-occurring mental health issues are also high in autistic women from ADHD to anorexia to anxiety and depression, taking precedence over giving an autism diagnosis. As a result, autistic women tend to receive their diagnoses much later than boys and men or <a href="https://autismwomensnetwork.org/autistic-women-misdiagnosis-and-the-importance-of-getting-it-right/" target="_blank">are misdiagnosed entirely</a>. To watch autism continually be portrayed as almost exclusively a male phenomenon as an autistic woman is incredibly frustrating - being at least 1 in 5 autism cases does not make the one case non-existent.<br />
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Then there’s the case of these autistic characters overwhelmingly tending to be white. While rates of autism diagnosis tends to look the same across different racial and ethnic groups, <a href="https://psmag.com/news/autisms-race-problem" target="_blank">white children are up to 50% more likely to receive autism diagnoses than their non-white counterparts</a>. This disparity in diagnosis can arguably be traced back to <a href="http://popfront.us/2015/09/rewriting-autism-an-interview-with-steve-silberman/" target="_blank">the first cases of autism in the United States being primarily from white upper middle class families,</a> who often had more resources to seek specialists and treatments. And when non-white autistic people receive their diagnosis, they tend to face significant delays in getting supports and unlikely to receive social understanding, <a href="http://popfront.us/2015/04/policing-disability-child-arrested-for-being-autistic/" target="_blank">especially by law enforcement</a>. These discrepancies are a big deal, so I can only imagine how trying it is for my non-white autistic friends to continually see autism painted with a Caucasian brush.<br />
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Then there's the characterization of the autistic character in question. For a disorder that affects people in a wide variety of ways (the DSM calls autism a "spectrum" disorder for a reason), the depiction of autism in film and television seems to fall under one of two categories - the automaton savant or hyper-awkward nerd. In the aforementioned Baby-Sitters Club book, the autistic Susan is described as a piano prodigy who is otherwise non-verbal and robotic, thus falling into the automaton savant category. Rain Man's Raymond Babbitt is the most notable of the savant type of character. He even lends his name to the <a href="http://tvtropes.org/pmwiki/pmwiki.php/Main/TheRainman" target="_blank">Rain Man trope</a> - where a disabled character has some kind of extraordinary ability to "make up" for their disability. But more increasingly common in autism portrayal is the hyper-awkward nerd. The Big Bang Theory's Sheldon Cooper is the most well-known example of this trope - hyper intelligent and yet an exaggerated socially awkward penguin (and thus often the butt of jokes on the show). There's no nuance to either characterization and neither characterization fully encompasses the complexity autism presents in various people. There is a reason why the expression "if you meet an autistic person, you've met <i>one</i> autistic person" exists, but it's hard to get that message across when your media representation of autism is so limited.<br />
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That isn't to say that I automatically take issue with every autistic character that I come across in media. Abed in the television show Community <a href="http://uproxx.com/tv/abed-community-exploring-aspergers/" target="_blank">is often postulated to be on the autism spectrum</a> and while he is eerily similar to Sheldon Cooper in portrayal, the show does not treat him as a punchline. He gets to be a complex individual and is often the calm one amongst a cast of zany characters. Bob's Burgers' Tina Belcher <a href="https://www.theodysseyonline.com/7-autistic-female-characters" target="_blank">is similarly thought to be autistic among fans</a>. She is funny and relatable while exhibiting traits not uncommon in autistic people. <a href="http://jumpingoutofthefishbowl.blogspot.com/2015/04/my-pop-culture-autistic-journey.html" id="id_9062_a7c7_ffa2_5c56" target="_blank">I am also on record for liking the HBO Temple Grandin biopic.</a> But these more rounded depictions tend to be few and far between, so whenever I hear of any film or show or story with or centered around an autistic character I tend to be initially skeptical of how they will be portrayed. Autistic people are people, not plot devices or punchlines.</div>
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On the whole, I'm glad to see mainstream media pick up on telling stories about autistic people - general exposure to autism does help society learn to be more accepting of autistic people. But I think we need to carefully consider what type of autism stories are currently being told and grow beyond those in current circulation. With every minority, what you see of them shapes how you perceive them as a whole and the more limited the narrative the easier it is to stereotype. I want to see more autism stories that go beyond the white male robotic nerd. I'd like to see stories of non-verbal autistic people who need live-in help. I'd like to see stories of highly social autistic people trying their best to appear "normal" to others. I'd like to see stories of autistic women and autistic people of color doing anything and everything. Autism is not a "one size fits all", and I think it's time the media caught on.<br />
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Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com1tag:blogger.com,1999:blog-3060938350791936355.post-34224453917416766192017-07-03T09:00:00.000-07:002017-07-03T09:00:20.466-07:00The Curious Case of Autistic Impostor SyndromeWhen I first learned I have autism, it felt like a simultaneous blessing and a curse. <a href="http://jumpingoutofthefishbowl.blogspot.com/2014/12/diagnosed-at-two-told-at-thirteen.html" target="_blank">As I have previously wrote</a>, I spent most of my childhood feeling like an outsider due to things I couldn't control and figured I was slowly going mad because no one would give me a straight answer of why I was the way I was. So it's easy to imagine that the news of my diagnosis was a huge relief in the sense that all my questions were answered. It was, but it also came with the cost of learning that I was not and never will be "normal" because of all the challenges I had. And with not being "normal", my life would always be harder than most people's.<br />
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In spite of this, I'm often told I'm a "success story". I made my way through school being fully mainstreamed into honors and AP classes, graduated from college in four years, and received a Masters in Social Work from a prestigious university. I have a good steady job where people appreciate my contributions and have made headway into participating in the disability community of Los Angeles. I live on my own, I don't excessively struggle with money management, and I have good friends and family I can depend on. At the risk of sounding arrogant, it does seem like I am a "success".</div>
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So why do I constantly feel like I'm barely keeping it together and what I do isn't nearly enough?</div>
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That particular feeling has given birth to one of the most popular terms in pop psychology: impostor syndrome. <a href="https://www.nytimes.com/2015/10/26/your-money/learning-to-deal-with-the-impostor-syndrome.html" target="_blank">Coined by psychologists Pauline Clance and Suzanne Imes in 1978</a>, impostor syndrome is defined as believing like one is unintelligent, incapable, or uncreative despite evidence of high achievement. This is accompanied by a constant fear of being exposed as a fraud despite high motivation to achieve. It's basically having terrible sense of self, despite seeming very successful and feeling that despite one's hard work they're not worthy for whatever reason. It's a fairly common phenomenon and leads to a lot of mental health issues, like anxiety and depression. <a href="http://www.paulineroseclance.com/pdf/ip_high_achieving_women.pdf" target="_blank">Women</a> and <a href="http://college.usatoday.com/2017/04/24/study-impostor-syndrome-causes-mental-distress-in-minority-students/" target="_blank">minorities</a> seem to be especially prey to impostor syndrome due to reinforced societal hierarchies . Anyone who isn't a white male feels like they have to work harder for the same achievements and live in constant fear that their hard work will always be dismissed as being lesser.</div>
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And then there's the case of disability. There's no doubt that living with a disability presents a lot of challenges that most people never think of having. And that sense that life dealt me a drastically harder hand to play has affected many aspects of my life. Autism affects my ability to relate and understand the world so being able to meet societal expectations in any area is a daunting task. What are the odds of being a "success" when you have a disability like autism? And what are the odds that you'll keep that "success" going?</div>
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For a long time, I felt that I had to prove that I was "better" than my autism. I had such a negative perception of myself when I learned of my diagnosis that I took the idea of having autism as a deficit. Because I was so different from my peers and had social and processing challenges, I had to be better than them in pursuing the same things they were. I believed that I had the right to want the same things as everyone else, so there was no reason for me to get what I wanted. I refused to let autism "get in my way".</div>
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Yet this deficit-based mindset kept me in a perpetual state of panic of what would happen if my autistic challenges did come to the fore, creating potentially negative consequences. I have often been described as "passing" for acting "normal" in many situations. But with that comes the price of that if any of my symptoms were made apparent, I would be in huge trouble. And I have had many past experiences confirming this fear. I was forcibly put on medical leave during my freshman year in college due to meltdowns. I had lost jobs and internships over panic attacks, and lost boyfriends because they couldn't "handle me". These experiences caused me to develop a guarded shell to prevent anyone from suspecting my challenges. This in turn made me feel I had to work twice as hard to maintain the veneer of "normalcy". With that challenge, it's been difficult to appreciate what I've been able to accomplish because I'm constantly afraid it'll all fall apart should something go wrong.</div>
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I'm in the process of unlearning this fear of inadequacy and appreciating what I have through learning self-acceptance. My experiences working with disabled people has forced me to confront my negative perceptions of myself. I believe there's nothing wrong with them, so why should I think there's something wrong with me? Autism has also helped me many ways. M y thought processes have always given me a unique perspective of the world that has garnered respect my peers, my professors, and later helped in my work. There is value in that, and I can appreciate that it makes me special in a good way. And I'm increasing taking joy in the small victories, whether it's a client getting job interviews or getting my projects done with good feedback. They say it's the small things that keep people going, and I've found that approach to be true for me.</div>
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It's hard to feel worthy of good things when you've spent a lifetime feeling undeserving and fearing the worst. Yes, I have worked harder to get what I have and will continue to do so, but it doesn't make what I've done any less great. And I encourage everyone to practice celebrating themselves through what makes them unique and taking joy in the small accomplishments. No matter what challenges anyone may have, I truly don't want anyone to feel like they aren't worthy of the good things they've worked hard for.</div>
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Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com2tag:blogger.com,1999:blog-3060938350791936355.post-59169598282481726802017-05-28T15:42:00.000-07:002017-05-29T08:07:59.268-07:00The "Normal" Versus The "Worthy" Autistic - A Response to "The Autism Matrix"My autism seems to be a shock to anyone I meet. When I tell people I'm autistic, the most common response I get is "Really? I never would've guessed!" I want to believe that it comes from a well-meaning place of surprise, but I can't shake the feeling that it's slightly condescending to me. Autism affects people in different ways and yet we as a society seem to only accept a narrow affect as being truly autistic - you must either be a "quirky" personality easily fixated on certain subjects and have little to no understanding of basic social interactions or be completely non-verbal completely isolating yourself from people with little to no control over your physical actions. I'm neither of these things and seem to project a certain sense of "normal" where only the most attentive would identify something is notably different about me. That doesn't mean that my diagnosis is invalid, but rather I don't easily appear to be what people seem to think autism looks like.<br />
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Case in point, the Autism Society of San Francisco president Jill Escher recently wrote a piece for The Times of Israel (a Jewish Times subsidiary) attempting to make identifying how autism affects people "easier" rather than relying on <a href="http://jumpingoutofthefishbowl.blogspot.com/2016/11/autistic-language-what-functioning-even.html" target="_blank">problematic "functioning labels"</a>. In it, she <a href="https://web.archive.org/web/20170425163453/http://www.sfautismsociety.org/uploads/1/1/7/4/11747519/autism_matrix_final_pdf.pdf" target="_blank">maps out via a "matrix"</a> where different autistic people would be based on things like IQ, social skills, verbal language, support needs, and more. The article has since been taken down from the Jewish Times from what I can assume was a barrage of angry comments disagreeing with Escher, but it still can be viewed on the Autism Society of San Francisco website <a href="http://www.sfautismsociety.org/blog/the-autism-matrix-a-more-realistic-approach-to-understanding-the-autisms" target="_blank">here</a>. There are lots of reasons why people find this "matrix" format troubling (my favorite pieces on it are written by <a href="http://redefiningnormalayoungwomansjourney.blogspot.com/2017/04/why-i-dislike-jill-eschers-autism.html" target="_blank">my friend Christine</a> and <a href="http://www.squidalicious.com/2017/04/truly-awful-pseudoscience-jill-eschers.html" target="_blank">prominent parent advocate Shannon Des Roches Rosa</a>), but I want to talk about one particular criticism that affects me greatly: the notion of the "worthy" and "needy" autistic.<br />
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I came upon this piece through one of my close disability community connections. She emailed me and a bunch of people the article wanting our thoughts and critiques. I initially had trouble deciphering the article because it had a lot of technical language that went over my head. But in examining it closer with the help of others, I came across an unspoken implication that got under my skin:<br />
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According to Escher, I am not "autistic enough" to represent what autism is and thus not worthy of needing help.<br />
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I wish I could say that Escher's implication is an outlier in the wider autism community. It seems incredibly callous to say that only some people can truly be representative of an entire population and others aren't. And yet I see many autistic advocates voicing their opinions be dismissed by others as being too "high-functioning" to truly get the complexity of being autistic in favor of people who have more support needs. It's almost like if you can string together enough words to form a coherent sentence in writing or speech then people will think you can't really attest to what being autistic is like. And if you already present somewhat "normal", then you don't really have any struggles worth talking about and needing help with anything.<br />
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These criticisms remind the historian in me of the concept of <a href="http://socialwelfare.library.vcu.edu/programs/poor-relief-early-amer/" target="_blank">"the worthy poor"</a>. Originating in the late 1500s and early 1600s in Protestant England, disadvantaged populations were split into two camps in determining who was worthy of assistance. The "worthy poor" consisted of people who seemed helpless in meeting societal expectations (e.g. orphans, widows, the visibly disabled, frail elderly) and the "unworthy poor" who people thought were purposely rejecting societal expectations (e.g. able-bodied, unemployed, alcoholics). This concept persists to this day in where people will reject welfare assistance as going to "lazy" and "entitled" people but more worth investing in children's programs. The disabled are still largely seen as being "worthy" of charity, but it looks like the "worthy" and "unworthy" concepts play into this field as well in how "disabled" you present. And this only creates friction in the disability community in how they're served.<br />
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Despite having outside therapeutic intervention and an in-school aide, I grew up exclusively among the non-disabled and neurotypical. Schools determined early on that I didn't need special education and any behavioral assistance I would receive would be minimal. I was also involved in many local community events and activities from my synagogue's youth group to local theater acting classes and summer camps with understanding adults acting as unofficial liaisons in including me among my peers. While this obviously had the upside in me being able to understand and integrate in the wider world, I was left with the impression that I shouldn't ask for nor expect any help. I didn't think anyone would believe me if I told them about my autism and thus they wouldn't give me anything should I ask. Everyone else didn't seem to have trouble fitting in and not needing anything extra, so why should I presume I should begin to ask even if I needed it?<br />
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Needless to say, this presumption has bitten me in the ass more than once. Despite presenting as "normal" to the average person, I've struggled with making friends and finding and keeping work. Various emotional outbursts have cost me more than one internship and job in my twenties and almost got me kicked out of undergraduate school. My discomfort in pursuing friendships because I didn't know what I was doing has made it hard for me to widen my social circle. If it weren't for my parents insisting I advocate for myself, my grad school advisors intervening to make my studies more manageable, and my current workplace going above and beyond in trying to accommodate me, I would have never gotten anywhere. I'd be perpetually stuck in limbo.<br />
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This is not to say I'm <i>more</i> worthy of assistance and advocacy than someone who presents more autistic than I. I'll be the first to recognize my privilege of being able to project a "normal" state and largely adjust to societal expectations to not need for much. But to presume that I or anyone like me shouldn't get <i>any</i> support because of our relative privilege is callous. Creating a hierarchy of autism affect like Escher's matrix feeds into the "worthy" and "unworthy" poor narrative, and it does nothing but pit autistic people against each other to fight for their rights. It perpetuates an "us versus them" mentality and I refuse to buy into it. Every autistic person needs some kind of help and accommodation to live a full, happy, and healthy life and that assistance looks different for each individual. And because autism is a spectrum, every perspective from every autistic person is worthy of consideration. To presume otherwise is just wrong and damaging for all.<br />
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There is no such thing as an autistic person who doesn't need help or advocacy. We all have legitimate needs and deserve to have a voice in advocating for those needs. All autistic people are "worthy" autistics and should be treated as such.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-63800557804152660582017-04-07T09:52:00.001-07:002017-04-07T09:52:14.497-07:00Am I Thirty, Flirty, and Thriving Yet?Come the 8th of April, I will enter my fourth decade on this planet we call Earth. The closer I get to that fateful day, I find myself thinking of the 2004 movie <a href="http://www.imdb.com/title/tt0337563/">"13 Going on 30"</a>. In that thirteen year-old movie (ha), an awkward burgeoning teenager wishes she could be "thirty and flirty and thriving" and through the power of <a href="http://tvtropes.org/pmwiki/pmwiki.php/Main/MagicRealism">magical realism</a> finds herself in a future thirty year-old self <a href="http://tvtropes.org/pmwiki/pmwiki.php/Main/BeCarefulWhatYouWishFor">only to find what she wants as a teen isn't all that's cracked up to be</a>. It's never been a movie I particularly enjoyed, but as I get older, the theme of wanting something for your future self and ending up in a place you didn't expect has been especially relevant to my life. What I wanted as a child didn't pan out and what I have now leaves me wondering how I got there and if it's the right place for me.<br />
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I guess you could say that as a kid, I too hoped I would be "thirty, flirty, and thriving". And while I didn't quite get what I wanted as a kid, maybe I ended up with something better.</div>
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When I was a kid, I had what could be described as both reasonable and absurdly big dreams for the future. I thought I was leading a fairly normal life as a kid with going to school, having some friends I spent time with, doing fun after-school activities and summer camp and the lot (even if I was also in therapy four times a week and had a one-on-one aide in my classes). I thought I would be like everyone I knew where I'd do well enough to go to college, get a job I liked, engage in fun hobbies, and obtain a steady romantic relationship to last me the rest of my life. And at the same time, I thought I would somehow become a big deal. I thought that I'd would make some kind of wide-scale impact where I'd be remembered long after I died. These things feel somehow contradictory, but it made sense to my childhood mind. And despite my notable differences, I never felt like I had a reason not to expect that future. Why couldn't I have a normal yet extraordinary life?</div>
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You'd think that the turning point of me realizing that I might not achieve what I wanted upon <a href="http://jumpingoutofthefishbowl.blogspot.com/2014/12/diagnosed-at-two-told-at-thirteen.html">learning I am autistic when I was thirteen</a>. Despite my mixed reactions on that revelation, I didn't feel like that could possibly affect my life goals. I may have a developmental disability with notable behavioral issues, but I was still largely doing what my peers were doing. No adult ever told me I couldn't expect to lead a life that wasn't drastically different from everyone else. If anything, I was encouraged to pursue that life - my parents allowed me to engage in my interests (particularly theater, dance, singing, and social action), my teachers encouraged me to challenge myself academically, and by high school I had a solid group of friends who supported me. Even <a href="http://jumpingoutofthefishbowl.blogspot.com/2015/06/a-spectrum-of-highs-and-lows-in-college.html">some challenges</a> <a href="http://jumpingoutofthefishbowl.blogspot.com/2015/07/a-spectrum-of-highs-and-lows-in-college.html">in college</a>, I still managed to study and experience what I wanted and graduate with my Bachelors within the requisite four years. I truly believed autism wasn't going to limit me in any shape or form from getting the future I wanted and, quite frankly, deserved.</div>
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The actual turning point was leaving college for the real world. I graduated in May 2009, almost six months after the catastrophic 2008 recession, and entered a nightmarish world of trying to find steady work with massive competition of fellow graduates and a slew of freshly laid-off working folks. While I had some work experience in doing office work for my father's company and summer retail jobs, I realized I was largely not prepared for the working world and with no clue with what to do with my life. (It didn't help that I pursued studying history and theater out of passion without thinking of how to realistically apply them.) I had unexpectedly joined a disenfranchised generation of looking for work that simply wasn't there.</div>
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Not helping things was that I had to move back home. I had just begun to figure out living on my own in college and now I suddenly had to go home with no prospects. It felt like I had lost the independence I was building up to find myself living with my parents and relying on them for everything - money, transportation, food, shelter, the works. I regressed into depression and despair, losing every coping strategy I built up through my teen and college years and became combative with my family in a way I never had been before. I thought I had lost everything and nothing was possible anymore.</div>
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The one saving grace of those tough times was a year-long internship. A family friend sent my parents a listing for internships with the City of Los Angeles and my parents insisted I apply for any and all of them. Through sheer luck, I scored an interview and a position at the Mayor's office for an education initiative. (I suspect it was because the woman supervising me was prejudiced towards my history degree.) While the work was unpaid and I suffered through two-hour bus rides both to and from the Mayor's office, I found the work fulfilling in a way I hadn't felt before. I was not only productive at my unpaid job, I enjoyed it in a way that my work mattered to others. I wasn't just getting work experience for the sake of it - I was working to meaningfully help others. And I wanted to do that for the rest of my life.</div>
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Through the advice of my supervisor, I applied for social work schools to qualify for the macro social action work I wanted to do. Within a year I was accepted into USC's program. My parents agreed to let me move out on account of pursuing a graduate degree (and financially support me until I could find paid work). While I had to adjust my program from a full-time two-year student to a part-time four-year student due to stress, I found a largely supportive faculty to meet my needs and discovered a new passion in working with the developmentally disabled. And through my parents and therapist, I found volunteer work in the meantime that eventually led to my current job where I've been for the last two years.<br />
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But where I am right now is not where I thought I'd be. I thought that I'd be more settled - I thought I would have had a career (or at least steady work) for a lot longer, I thought I would have settled into a house as opposed to the apartment I currently own, and I also thought I'd be in a steady relationship as opposed to being single. It's rough to have these expectations and not be able to meet them. And while I know it's worthless to despair over things over what could have been, but I can't help but feel like I somewhat failed myself. Maybe I've been too influenced by general societal expectations to meet those goals, but they still exist and the pressure to meet them is real. And as someone who strived to be "normal" for most of my life, it feels awful to not have that.<br />
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Yet with time I have also begun to come to terms with what I have now and what I've been able to do. There were a lot of things I couldn't have possibly predicted - the economic disaster that hindered my job prospects when I graduated from college, what career I would end up pursuing, and how long it would take to make that career happen. And while I wish I wasn't single, no one realistically knows when and where they'll meet someone to make a life partner. But what I do have isn't too shabby - I'm living on my own, I found a passion to pursue as a career, I have work where I'm supported well, and I'm actually coming to terms with and accepting not being "normal". That's really not that bad in the big scheme of things.<br />
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Yeah, I didn't end up where I thought I'd be when I was younger. Real life took me on a slightly different path and that ended up being not that bad. In fact, I feel pretty good about where I'm at because I feel a lot better about my prospects than I was almost ten years ago. And people say that the thirties are generally better, so I may end up having a much better future. Maybe the thirties are indeed when I'll truly be flirty and thriving. I can live with that.</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-7594581781117286832016-11-22T08:54:00.000-08:002019-01-14T16:59:28.798-08:00Autistic Language: What "Functioning" Even Mean?It seems to be universally agreed that what makes humans different from other animals is our language. All animals communicate, but human language goes beyond non-verbal methods like body language and physical gestures to using spoken and written words. Unlike physical communication, words have the most value in how people communicate our thoughts, actions, feelings, and ideas. We have all decided that above everything else, words matter the most.<br />
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It's with this concept in mind that I want to talk about the language surrounding autism. There's lots of ways to describe autism and how it affects people and as many different viewpoints on how autism is discussed in language and tone. I don't want to get into the various tones of autism discussion because I know that'll cause nasty fights that I want to avoid at all costs. But I do want to talk about certain terms used and what they mean in how autism is seen by the world. This will take a couple of posts as there's a lot to go into, so bear with me and my thoughts.</div>
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<b>Please note that these posts only reflect <i>my</i> personal views on autism language. I'm not going to dictate how other people should talk about autism because A) I'm not the boss of everyone, and B) people can get <i>really</i> angry when they're told what to do. I just want to explain how <i>I</i> feel about these terms and I hope that I can be respected for feeling that way. I won't tell you what to do or feel, so please do me the courtesy of not telling me what to do or feel.</b></div>
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Got that?<br />
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Good. </div>
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Now let's talk "functioning" labels.</div>
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<a name='more'></a>Autism affects people in many different ways. Some autistic people talk and some autistic people don't. Some autistic people can have some control of their body movements and emotional expression and some autistic people don't. Some autistic people can pick up various social and life skills when taught and some autistic people have trouble with it. Some autistic people live on their own and some autistic people need 24-hour care-taking. There's so much more I could list and of course with what I just wrote there are plenty of autistic people who are in between. Autism is incredibly complex and there are studies that that autistic brains vary much more differently between each other than non-autistic brains do.</div>
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But complexity is very hard to process. When faced with complexity, most of us have a hard time grasping at all the various elements of what makes a thing a thing. Thus what a lot of us do is try to simplify complex things into simple terms that we can describe it. And in a world where people tend to take grey concepts and issues and make them black and white, there are two terms people tend to use in describing how autism affects people: "high-functioning" and "low-functioning".</div>
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These "functioning" labels are used to assess how autism affects a person in the way they are able to present as "normal". With that in mind, "high-functioning" says that the autistic person is largely able to present as "normal" with some elements that make them different and "low-functioning" says that the autistic person does not and cannot present as such. These two "functioning" levels are often used to assess how much assistance and help the autistic person needs, and as you can imagine "high" means needing minimal and "low" means needing a lot. And when people use negative and/or catastrophic tones to talk about autism, they usually point to the "low functioning" people to prove their points.</div>
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So what are my feelings on "functioning" labels?</div>
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I don't use them. In fact, I refuse to use them.</div>
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Before I start on why I don't like them, I want to clarify that I get why people use these labels. As I said earlier, people like simplicity when dealing with complex matters. I know I like simplicity - it's just easier. But autism isn't a black-and-white condition. There are no two modes of being autistic and it's a disservice to assume so. And there are some very negative implications of using these labels to describe an autistic person.</div>
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Let's begin with the term "functioning". Dictionary.com defines "function" as "the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role". With this definition, we can assume that people supposed to operate one "correct" way. Calling someone "high" or "low" on the "functioning" scale thus indicates how they are able to operate in that specific way. </div>
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Think of it as comparing cars - there's the fully operational car, a car with maybe a few scratches and a wonky air conditioner but otherwise runs pretty smoothly, and then there's the beat up car that can drive well enough but in need of constant check ups to keep it running. Which car do you think has the most value? What car would you want to drive? And how would <i>you</i> feel is someone compared <i>you</i> to a car with problems?</div>
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I know I don't want to be compared to a car with problems. And I don't want anyone to be compared as such either.</div>
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Then there's the support and assistance implication with the labels. If someone is called "high-functioning", it's largely assumed that they don't need much support and can fend for themselves well enough. If someone is called "low-functioning", people see them as needing the maximum amount of support because they supposedly can't fend for themselves. These notions fuel what kind of services and accommodations people get, so these labels mean a lot to people's lives.</div>
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It's at this point I want to share a story:</div>
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I recently went to a community meeting for work about <a href="http://www.dds.ca.gov/sdp/">a law passed in California dictating people receiving state-paid services can be given the option to choose what services they get beyond what they may be currently granted through a bureaucracy system known as regional centers</a>. During that meeting, a mother asked some questions about how the law would affect her "high-functioning" son. The meeting came to grinding halt as people got really offended by her using that term and were quick to tell her off. But this one analogy from a different mother explaining her discomfort with "functioning" labels stuck with me:</div>
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"Everyone has good days and bad days. Imagine if you were <i>only</i> defined by your good days - it would invalidate any bad days you have. The same goes if you were defined by your bad days - it assumes you don't have any good days. And that's a great disservice to you."</div>
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What I got from that analogy was how "functioning" labels define people by their strengths and weaknesses. Assuming someone needs all the services because they have so many issues doesn't allow their strengths to be taken seriously. And assuming someone presents so "normal" that they don't need help means that they don't get help when they need it. "Low-functioning" means no strengths, "high-functioning" means no weaknesses, and that's a big problem to me.</div>
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I've been faced with this very issue. I've been described as "<i>very</i> high-functioning" or being "mildly" autistic. If I didn't tell people I'm autistic, they would never guess so because I can blend in well enough to fool people as such. But I have my own issues that make me far from "normal". I have an exceptionally hard time making friends. I miss a lot of social language nuances. I can get emotionally overwhelmed to point of complete breakdown, which almost got me expelled from college. I've even been fired from jobs for not understanding certain unspoken protocols. I need help and support too, but because I'm "high-functioning" it's hard for me to get it. And it's because even if I ask for it, many people will assume I don't need it.</div>
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I don't have a good answer in what to do with "functioning" labels. People like simple terms they can parrot when describing people and there are no simple terms to replace these labels that fully conveys how autism affects a person. Autism isn't a straight line from A to B - it's more like a color wheel, <a href="http://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum">as this comic perfectly illustrates</a>. There's many attributes of autism a person can possess and it all varies from person to person. And I don't know what short-form language can best convey that.</div>
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So what do I do if I personally reject "functioning" labels? I replace them with the concept of accepting complexity. The world is not black and white, it's infinite shades of grey. This means that people are not the same way and sorting them into neat little boxes based on presentation doesn't fully realize who they are as individuals. We all have our needs and our strengths that make us who we are, and we need to accept and appreciate that when we assess each other. As Walt Whitman once wrote, we all contain multitudes and thus we cannot let single attributes define who we are.<br />
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We are all "functioning" human beings. We all operate how we're meant to. And I won't assume anyone is anything less than that.</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com3tag:blogger.com,1999:blog-3060938350791936355.post-36998925999440358042016-06-27T08:24:00.002-07:002019-10-22T12:11:58.066-07:00Fishy Feels - How "Finding Dory" Does Disability Right<a href="http://jumpingoutofthefishbowl.blogspot.com/2016/06/me-before-me-before-you-or-disability.html">A few weeks ago, I wrote about disability in the media (or rather how disability is portrayed as a tragedy by media).</a> In it, I said that stories about disability are mostly about how a disabled person affects others, and how all involved parties "struggle" with it and have to "persevere". And I wrote that the remedy to this is to tell stories from the disabled character's perspective and promote it like whoa.<br />
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I honestly didn't think that I'd see that kind of story would be done so soon. <a href="http://variety.com/2016/film/news/box-office-finding-dory-central-intelligence-1201798028/">Nor would that story be hugely successful.</a> And nor that that story would come from, of all places, Pixar.<br />
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My first thought upon hearing "Finding Nemo" would spawn a sequel called "Finding Dory" was the same as everyone else's - "Really? A sequel? Can't Hollywood come up with <i>anything</i> original?" It doesn't help that most sequels to movies tend to do nothing but spout the same story as the original without the original's magic and with nothing new to say. Even Pixar isn't immune to this rule: the sequels for "Cars" and "Monsters Inc." fell flat in comparison to their predecessors. And whenever a sequel happens to be good, it's because it expands on the first film and has its own story to tell.<br />
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"Finding Dory" succeeds for those reasons indeed, but it does something more. It tells of living with a disability and all the complications and strengths within it. And it did something that very few movies do - it made me profoundly relate to it and sob by the closing credits.<br />
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Why? To explain, there will be spoilers from here on out.<br />
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<a href="https://www.blogger.com/null" name="more"></a>On the surface, "Finding Dory" is a simple story - the Pacific regal blue tang comedic sidekick from "Finding Nemo" has a sudden trigger of a long-dormant memory of her parents she mistakenly separated from as a child and drags her buddies Marlin and Nemo on a journey to go find them. It seems similar to the first movie, but instead of focusing on trekking the ocean the bulk of the story actually happens when the fish arrive at location they believe her parents are at (an American marine life institute). Namely, the bulk of the story is following the characters individually when they're separated at the institute, primarily on Dory and the characters she meets.<br />
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The opening scene of the movie makes the focus on Dory abundantly clear - she's a baby fish learning about the dangers of "the undertow" from her parents via song, and in those opening moments we the audience learn that her short-term memory loss from "Finding Nemo" is a chronic condition. This does two things: 1) it makes we, the audience, feel bad for laughing at her during "Finding Nemo", and 2) it showcases how challenging that chronic short-term memory loss is for her and the characters around her. And the film takes Dory's side in both showcasing how her memory loss affects her and how she deals with it, prioritizing it over Marlin's, Nemo's and other character's perspectives.<br />
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There are so many ways "Finding Dory" hit home to me. Autism affects me in similar ways Dory's short-term memory loss affects her. It affects my ability to communicate, socialize, process complicated concepts, and the formation of my overall worldview. My memory bank may be significantly better than Dory's, but both our natural instincts are not considered conventionally appropriate at times (even if it turns out to be the correct ones). Dory and I are in constant need of guidance navigating a world that was not built for us to thrive.<br />
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It's not easy to live this way. Despite being told I present very far off the spectrum, being autistic has created personal and systemic roadblocks for me throughout my life. My troubles regulating my emotions and understanding social cues resulted in situations that have turned off others and thus have limited opportunities for me. My parents hired babysitters to take me on early childhood excursions to parks and zoos because few parents would let me play with their kids. I was not accepted into a prestigious private school despite qualifying academically because the school didn't want to provide supervision. I was asked to take a leave of absence from college my first year when I had a bad meltdown and school officials didn't know how to handle my needs. Dory has her own challenges - her limited ability to focus and remember frustrates almost every character she meets to the point where few tolerate her, let alone take a liking to her. And all that makes it difficult for her to seek the help and support she needs in finding her parents.<br />
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But "Finding Dory" does something other stories about disability do not do - it does not fault or devalue her for her condition. When Dory's parents are trying to help her learn and remember the undertow song they're teaching her at the beginning of the film, her inability to get it is shown as frustrating but it doesn't diminish their love for her and their willingness to teach her. More flashbacks to her childhood prove this point over and over again. And while Marlin and Hank (an octopus who reluctantly assists Dory in locating her parents in the marine life institute) repeatedly express frustration in Dory's lack of focus and distractibility, they end up truly liking her for her differences and appreciate her for her spontaneity and determination. In one moment in the film where Marlin and Nemo are stuck without her in a seemingly dead-end situation, Nemo asks his father what Dory would do and Marlin is able to figure their way out by looking at their predicament through her perspective. Where Dory was repeatedly seen as a frustrating comic asset in "Finding Nemo", Dory in "Finding Dory" is truly valued as her own being.<br />
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This takes me to the most beautiful element of the movie - none of the main players in "Finding Dory" gives up on her. Hank, Nemo, Marlin, and several other characters she encounters in the marine life institute as allies all believe in her ability to find her parents. And although one of Dory's flashbacks shows Dory eavesdropping on her parents expressing fear over her to survive on her own (especially since she accidentally gets caught in the undertow away from them, confirming those worst fears), when she eventually finds them in a emotional reunion her parents sob as they tell her they never gave up on her ability to find them again.<br />
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That moment when Dory's parents show their love and devotion to her even in the worst possible circumstances made my tears flow. I have always had an unshakeable fear that people would just give up on me. Being aware of my differences and my challenges makes me feel like a constant source of frustration to everyone around me. Like Dory, I have always felt the need to apologize for my condition because I fear people will react negatively. It makes me live in a state of terror that people will decide I'm too much trouble to be worth keeping around in any capacity. And yet life has proven that this fear is largely unfounded. Many teachers and professors were sympathetic and encouraged me to reach higher because they saw and valued my strengths. My friends have all seen me at my worst emotional moments and still support me when I need them. And most importantly, I know I have caused a lot of drama and pain for my family, but they have not let me go. They constantly proclaim their love and support for me, and tell me that their greatest wish is that I am happy. I know as I write this I still can't shake my doubt that this support will last, but I know I could have it much worse. I should stop to smell the roses rather than expect them to quickly wilt.<br />
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I don't expect everyone to get "Finding Dory" on this level. I don't expect people to even <i>like</i> "Finding Dory" the same way I did. What I will say is that there's a lot more going on in "Finding Dory" than meets the eye. <a href="http://www.salon.com/2016/06/17/finding_dory_is_more_than_just_another_pixar_cartoon_its_a_powerful_portrayal_of_living_with_a_learning_disability/">I'm not the only one who read disability into the movie</a> <a href="http://themighty.com/2016/06/what-finding-dory-taught-me-as-someone-on-the-autism-spectrum/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=AUTISM">and was touched by it.</a> There's a powerful message in "Dory" worth taking away - people with disabilities are worth being accepted and loved for who they are. We may not fit in with what society wants people to be, but we don't deserve to be shut away for it. If you just have the patience to take the time getting to know us, you'll find that we have a lot to love and the world is a better place because of it.<br />
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And should the worst comes to worst? Do what Dory does - keep calm, and just keep swimming.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-47756422459603471522016-06-10T08:10:00.000-07:002016-06-10T08:10:45.198-07:00Me Before "Me Before You", Or Disability Doesn't Always Need to be TragicI'm not a big fan of sappy romantic dramas. While I will admit to being among the many who sobbed at the end "The Notebook" when I first saw it as a teenager, stories of people falling in love while something "greater" than themselves try to keep them from being together just feels tired to me. There aren't many ways to make this Romeo and Juliet narrative new and innovative, and the onslaught of these films in recent years (more often than not adapted from Nicholas Sparks books) just reinforce how tired this trope has become.<br />
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The recent entry into this genre, "Me Before You", initially looks the same. Boy meets girl, boy and girl fall in love, but will their love survive something neither of them can control? And like its contemporaries, it received mixed reviews upon release. But what makes this film different from its boring, tepid ilk is the "tragic" thing that complicates the boring couple's love:<br />
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The boy is a recent quadriplegic, and the girl is trying to prevent him from pursuing assisted suicide through the power of love.<br />
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This film has come under criticism from disability activists for casting able-bodied actor Sam Claftin as its paralyzed male lead, misrepresenting and fetishizing the disabled, and overall framing disability as an overwhelming tragedy worse than death. <a href="https://www.goodreads.com/interviews/show/884.Jojo_Moyes">The author of the book-turned-film notably didn't consult quadriplegics while writing the book or screenplay of the film</a>, and <a href="http://www.hollywoodreporter.com/news/me-before-you-director-defends-899512">the director of the film defended it as being "about the right to choose" and that critics simply had no knowledge of the book or film to justify their outrage, calling it a "fundamental misunderstanding".</a><br />
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Putting aside the complicated politics of assisted suicide, the controversy surrounding "Me Before You" has found myself looking at how disability is portrayed in the media. Or rather, how common I've found disability to be portrayed as a tragedy by the media. In "Me Before You" Claftin's character is portrayed as being a young vibrant success before his paralyzing accident, putting him in despair that he supposedly can't enjoy life in the way he was accustomed to. The upcoming Sundance TV mini-series "The A Word" profiles a British family coming to terms with their child's recent autism diagnosis and is advertised as a "drama". The film "Theory of Everything" ends with a dream sequence that sees Stephen Hawking (played to an Oscar win by similarly able-bodied Eddie Redmayne) able to exit his motorized chair and able to talk, hinting at how his life could have possibly been better had he not developed ALS after the film shows all the things that "limited" him. And the popular show "Parenthood" had a substantial subplot about a family's "struggle" with their son's autism.<br />
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These stories about disability tend to not be about the disabled person in question but rather how their disability affects others. All the aforementioned shows and films are told through an outsider encountering and engaging with the disabled character. The main character of "Me Before You" is Emilia Clarke's character, who is Claftin's caretaker. "The A Word" and "Parenthood" put the parents and extended family members of the autistic sons at the forefront of the narrative. And "The Theory of Everything" was based on a book written by Hawking's first wife and the film starts with her meeting him and proceeds to frame Hawking's medical state through her eyes. In this narrative, the disabled character doesn't get a substantial chance to share their perspective on their life and condition. More often than not, they are objects to further the non-disabled's characters' story if not serving as outright obstacles.<br />
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None of this is to say that portraying disability as difficult isn't a valid narrative. I'll be the first to attest to disability to being hard as hell. Autism has made it hard for me to adjust to the expectations of our highly socialized world and has affected everything from making and keeping friends to meeting school and work expectations (and in the latter retain work). <a href="http://jumpingoutofthefishbowl.blogspot.com/2016/05/how-do-you-handle-autism-anxiety-and.html">And as I wrote last month</a>, I'm among the many disabled people who suffer from anxiety, depression, and have had suicidal ideations in the past. Disability comes with a huge set of challenges that most people will never and can't ever hope to know about unless they are disabled themselves.<br />
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The problem is that the go-to disabled narrative is the one of disability as a tragedy. More often than not, disability is shown as being a lesser form of life than the able-bodied one. The able-bodied main characters are thrown into a situation where everything about the disabled person is hard work and a strain on everyone's lives. The challenges of being and/or working with disabled people are real, but when they are the primary focus of the story it demeans the disabled character to being a burden on others to the point where, as in "Me Before You", death is seen as a noble pursuit to end their misery. No one wants to feel like a burden and no one wants to feel like their life is worthless just because they don't fit the norm.<br />
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So how do we fix this problematic pattern? Simple - tell and promote disability stories from the disabled character's perspective. This means consulting the neurodivergent and disabled on the stories centered around them or just giving the disabled and neurodivergent the opportunity to share their own stories. There's as many different ways we disabled and neurodivergent folk live our lives as able-bodied, neurotypical people do and it's not always sob stories or inspirational pieces "overcoming" our conditions. And further, we the public need to promote and hold these stories as important and worth people knowing. This part's considerably more tricky, as the able-bodied and neurotypical establishment has a lot of power over what stories are shared and how. But we as individuals have our own power in calling out troubling portrayals of the disabled and demanding better. After all, <a href="https://www.buzzfeed.com/arianelange/me-before-you-backlash-disability-rights?utm_term=.qodPB4v3v#.mmqeOgBEB">the criticism for "Me Before You" by disability groups is covered more by the press rather than the film itself</a>. I'll take that as a small sign of progress.<br />
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Like any disability, autism may make my life complicated but it doesn't make it tragic. My life has inherent value and is my own, rather than a pawn in someone else's tale. I deserve to see stories that put people like me in the driver's seat rather than the back of the car or worse set as a roadblock. I want to see me as the hero of my own story, whether it be tragic or comic. In short, I want to see <i>me</i> before "Me Before You".<br />
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<br />Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-20501810947437811242016-05-16T11:28:00.000-07:002016-05-16T11:28:10.978-07:00How Do You Handle Autism, Anxiety, and Depression?Earlier this week, one of my favorite actors <a href="http://www.upworthy.com/kristen-bell-opens-up-about-living-with-depression-and-anxiety-in-this-touching-interview">Kristen Bell revealed that she suffers from depression and anxiety</a>. In an interview with "Off Camera with Sam Jones", she talked about how her mother told her at a young age about a hereditary serotonin imbalance in her family and taking medication to help ease the hormone. You can watch the interview here:<br />
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It was shocking to me to hear this from Bell. She's known for being a very bubbly and positive personality, which makes her one of the most likable personalities in Hollywood. To hear she apparently has purposely worked to cultivate this to compensate for her mental illness is something I would've never expected. But it ultimately made me love her more for her honesty and willingness to be open about herself.<br />
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And it particularly hit home for me because aside from being autistic, I too suffer from chronic depression and anxiety.<br />
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<a name='more'></a>I don't quite know how long I've had depression and anxiety. Like Bell, both these things run in my family. My late grandmother and her sisters had varying degrees of depression and my father has displayed anxious tendencies throughout my life. (My father is currently not so anxious due to a combination of medication and his dog, which he cuddles with whenever he feels down.) What I do know is that both of these things seem to be much more extreme in me than anyone else in my family.<br />
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I can remember my first depressive thought pretty vividly. I was about eight years old and had already figured out I was very different from my peers. I was aware of my meltdowns, my frustrations with simple socialization skills everyone else seem to have figured out, my overall lack of friends, and how negatively other kids and adults regarded me. I had began to believe I was a problem, especially noting my parents' frustration every time a school official told them about my bad days. And so I found myself sitting alone at a table during lunch one day and a disturbing thought crossed my head - if I died at that very moment, people would be happy I was gone. It's a horrible thing for a child to conceive, and it's never quite left me no matter how hard I've fought it.<br />
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Anxiety manifests itself in a similar way for me. Being aware I was different meant I had to try a lot harder than everyone else to fit in. I was taught to think about every action I took, every word I said, and how to present myself in the best possible light. All this thinking made me pressure myself to be as likable as humanly possible and the moment I started to get any negative feelings, I would fight it until it spiraled out of control and I'd explode. And to this day whenever I plan something or faced with tough interactions, I'd meticulously count for every detail that could go wrong and if a wrench is thrown in the mix it's hard for me not to lose it.<br />
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So what does this have to do with autism? Numerous studies have shown that autistic people are extremely likely to have various forms of mental illness, most common of which are anxiety and depression. While I'm not the first person to question studies concerning autism (as it often lacks autistic involvement), I have to give it some validity because I see it in real life. Many of the clients at my agency receive mental health counseling and have expressed issues of low self-esteem and perception of self. This should give me some kind of comfort in feeling less alone, but the reality is that depression and anxiety makes you feel isolated from everyone else. And knowing other people have it too doesn't erase that gut feeling of being solitary in your particular brand of funk.<br />
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My mother says my autistic symptoms get exasperated whenever I'm in an anxious or depressive state. I don't know how much of that is true but here's what I do know: when I'm depressed, I isolate myself from everyone. I will want to do things but I get so physically and mentally debilitated that I can't do them. I won't want to see anyone lest my mental state brings them down with me and spend my time crying or sleeping. And whenever I'm around people in a depressed state, I either shut down entirely or spiral into negative thoughts that I end up exploding in front of everyone. As for anxiety, I end up riling myself up to panic attacks and become unable to process anything both physically and mentally. Both are incredibly distressing for me, let alone anyone else who catches me in those states.<br />
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My personal treatment for this is three-fold. My life-long therapy visits have turned from play and behavior to addressing my overall mental health. I've had such distorted thoughts throughout my life that need addressing that they can best talked about person to person. And like Bell, I'm on various medications to level out pre-existing chemical imbalances in my brain. They've changed over the years but the current combo seems to work for now in keeping me going day to day at a level state. But probably the most telling strategy I employ is trying to keep myself as busy as possible. I read, watch videos and movies, go out with friends, see family - anything I can to keep myself from spending time with my thoughts. It's distraction and not necessarily healthy, but it works until I find myself completely alone. I'm trying to fix that in self-reflection but it's a hard process - lifelong negative messages don't get defeated easily.<br />
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Mental health is not something that gets addressed when it comes to autism. More often than not people treat autism as all encompassing and any other issues, particularly possible co-occurring mental illness, get left by the wayside. When I first received my diagnosis in 1990, the doctors didn't even think of recommending addressing mental health needs outside of behavioral therapy and that's still true in the wider world today. Autism isn't a catch-all diagnosis that negates any other issues one may have - everyone is inherently complicated and multiple diagnoses are not mutually exclusive. And both are so heavily stigmatized that anyone dealing with them are shamed in wanting to admit they have them, let alone address them.<br />
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<a href="https://www.youtube.com/watch?v=NGY6DqB1HX8">Last Week Tonight did a piece on mental health last year</a> and emphasized that we cannot stigmatize it and those who need it treated. In the same way, we cannot ignore nor stigmatize any mentally ill autistic person. If anything we need love and support so we can live our lives happily and healthily.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-3288890266783971672016-04-01T12:00:00.000-07:002016-04-01T12:00:04.808-07:00Despite Everything, I Don't Hate AprilThe month of April has always held a special place in my heart. Spring is fresh in the air, it's still early in the year but not too much so, and the weather is pretty cooperative in the not-too-hot-but-not-too-cold way. But it's most likely due to the fact that it's my birth month, as I was born on the eighth. In fact, April holds a lot of birthdays of people I love - one of my closest friends' birthday is four days before mine, my father's is towards the end of the month, and my late grandmother's was six days after mine. It's always been a month of celebration in my life, and I wouldn't have it any other way.<br />
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But since becoming more involved in the autism world, I see people who don't like April as much as I have. That's because April has somehow been deigned "Autism Awareness Month" and with it comes a lot of feelings on how it's handled. But in spite of all the issues that come with the concept of "autism awareness", I honestly can't bring myself to hate April because of it.<br />
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I know that looks like a controversial statement from an autistic person. Just hear me out.<br />
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Do I have an issue with autism awareness? It's kinda complicated, but if I had to simplify it'd be "yes" and "no". As far as the "no" goes, I understand why awareness is needed. If you're neurotypical and able-bodied, you don't tend to think about autism unless you're involved with it professionally and/or personally. Like Black History Month and International Women's Day (which in of themselves come with their own completely understandable issues), Autism Awareness Month gives people the opportunity to learn about something they'd never otherwise know about and get some basic understanding of it. And the way the United Nations has handled it recently has grown to be more accepting of autism as a whole. Last year's topic handled unemployment among autistic adults and came with some cool initiatives. This year's topic is inclusion and neurodiversity, <a href="http://www.un.org/en/events/autismday/2016/events.shtml">featuring Neurotribes author Steve Silberman as the keynote speaker</a> <a href="https://www.facebook.com/steve.silberman/posts/10156646827835313">with a discussion with Autistic Self-Advocacy Network founder Ari Ne'eman</a>. This shift from basic facts to real issues and inclusion makes me hopeful in how autism is discussed in the larger conversation.<br />
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But in terms of the "yes" part, it's pretty simple - awareness is just awareness. <a href="http://jumpingoutofthefishbowl.blogspot.com/2015/04/for-autism-acceptance-month-im-learning.html">As I said last year</a>, awareness is an absurdly simple concept: "Hey everyone! Did you know there's a thing called autism and it's a neurological disorder and disability that affects social development? Well, now you know!" That concept can either be spun towards the positive or the negative, and it's very easy for people to gravitate towards the negative perspectives of autism. Autism has been used as a scare tactic to get people to not give their kids proper vaccinations, played as a biomedical condition for people to try inhumane "treatments" to rid their kids of "toxins" caused by autism, and has been portrayed as something robbing people of their innate humanity due to difficulties of traditional forms of human communication. And with those negative messages sent about autism, it's very easy for people to come to the conclusion that autism is something to be "cured" or eliminated in the same vein as HIV/AIDS or cancer. While some autistic people would welcome a possible cure to deal with some aspects autism takes in them, the idea of a cure to many is a major disservice, if not downright insulting. Despite it being complicated, cure talk steers the conversation away from including autistic people in the world to autism as something needing to be "fixed" on a neurological level. And <i>no one</i> wants to be seen or treated as a problem.<br />
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Despite this negative perception of autism so ingrained into the collective consciousness, I do see a glimmer of hope in eradicating this horrible point of view by the autistic community. In the face of the misinformation that can be spread about autism, the autistic community responds to "Autism Awareness Month" with <a href="http://www.autismacceptancemonth.com/about/">"Autism Acceptance Month"</a>. Instead of medicalizing and fear-mongering autism, autistic people and our allies take April as an opportunity to spread accurate, positive, and respectful information and foster love and affirmation of autism in the process. Colors like red and the rainbow infinity symbol are employed to promote a universal understanding rather than the bare bones information. Autism Acceptance Month is an opportunity to promote autistic people as a valid perspective worth listening to, and I'm completely on board with that. I've always believed that respectful education and promoting marginalized voices in doing so is always the way to counter misinformation and the often accompanying bigotry that comes with it, and Autism Acceptance Month is a prime example of doing that and doing it well.<br />
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So no, the month of April does not send me into a frenzy of "OMG THIS IS THE WORST THING EVAH FOR AUTISM". Yes there's a lot of damage that can be done with the concept of "awareness", but I have a lot of hope in the growing trends of acceptance and respect when discussing autism in the past several years. I'm beginning to see a shift towards a more inclusive and meaningful discussion in how we can make autistic people's lives better. It's a rebirth of the autism discussion, fitting pretty damn well with my overall perception of April being a time of birth. And I find that's worth some kind of celebration as opposed to damnation.</div>
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Plus on a selfish note, I can never hate April as an April baby. Give me that at least. :P</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-6722756902265581582016-03-15T13:23:00.001-07:002016-03-15T13:23:09.864-07:00Help Me - I'm Becoming an Autistic Adult!Come May, it'll be a year since I graduated from USC with my Masters of Social Work. A full year since I left the confines of school and was thrown headfirst into the wider world to fend for myself. Now as I have mentioned before, I got pretty lucky as far of my transition post-grad school into working life in a pretty inclusive environment with some helpful strategies to ease my new responsibilities of bill paying, budgeting, and schedule management, among other things. And all of this wasn't just sprung upon me unexpectedly upon graduation - my parents spent years teaching me various life skills such as cooking, health care, and managing my money (which I was horrible at until I realized my pay check was gonna cover my rent and other bills previously paid for by my parents). I had also been living on my own for the past four years and thus had to work out how to care for myself outside parental supervision and care. And I knew how to work out bus routes from college before getting my driver's license at age 23. So I guess I was more prepared to adjust to adulthood than I previously thought I was.<br />
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But many autistic people aren't so prepared for that adjustment. In fact, becoming an autistic adult is fraught with challenges. And that's largely because autistic people face a world that is not built for nor ready to accept their needs and wants.</div>
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<a name='more'></a>Most autism services focus on children. As autism diagnoses increase to 1 in 68 (which in itself is probably a conservative estimate given diagnosis disparity), more and more kids are in need of services and community than ever before. This increased prevalence of autism (most likely due to improved diagnostic criteria) has seen an increase in interventions, services, and accommodations for autistic kids. From school support to specialized camps to <a href="https://www.amctheatres.com/programs/sensory-friendly-films">sensory friendly movies</a> and <a href="https://www.tdf.org/nyc/40/Autism-Theatre-Initiative">theater</a> showings to <a href="http://www.travelandleisure.com/articles/autism-friendly-travel-destination-south-carolina">specialized vacation spots,</a> there's now a bounty of things to make autistic children's lives a bit easier to navigate. And that is far from a bad thing.</div>
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But given the current diagnostic rate, roughly 50,000 autistic people turn 18 every year. And when they turn 18, those services suddenly halt. School support cuts off at age 21 (the max age one can remain in high school), adult services and accommodations are hard to find, and the world suddenly becomes a lot more complicated. Higher educational institutions largely don't know how to assist autistic students in their studies and social lives. Independent living skills become more crucial as parent support slowly diminishes. Finding a place to live outside of one's family is difficult. But most important, finding and keeping work is excruciatingly painful. <a href="http://www.npr.org/sections/health-shots/2015/04/21/401243060/young-adults-with-autism-more-likely-to-be-unemployed-isolated">Recent studies show up to two-thirds of autistic young adults aren't working nor have any work experience</a>. And if they disclose their diagnosis in their resumes, <a href="http://news.rutgers.edu/research-news/rutgers-study-employers-discriminate-against-qualified-workers-disabilities/20151104#.VueVwZMrKfU">th</a><a href="http://news.rutgers.edu/research-news/rutgers-study-employers-discriminate-against-qualified-workers-disabilities/20151104#.VueVwZMrKfU">ey're unlikely to get any follow-up</a>, <a href="http://mic.com/articles/127757/study-finds-people-with-a-disability-are-more-likely-to-face-employment-discrimination?utm_source=policymicTBLR&utm_medium=main&utm_campaign=social#.QYOiUuBiA">which which is equally the case for most disabled adults in America, despite 1990's Americans with Disabilities Act</a>. Autistic adults suddenly confront a world that isn't prepared for them at best, and can feel downright hostile to them at worst.<br />
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That's not to say there aren't services available for autistic adults. Day programs and supported living services do exist at various agencies, including the one I work at. <a href="http://www.healthcentral.com/autism/c/1443/162384/colleges-universities-programs/">There's a number of colleges that offer support for autistic students</a> (although they don't run cheap). And l<a href="http://www.un.org/en/events/autismday/2015/sgmessage.shtml">ast year's World Autism Awareness day made employment for autistic people its top priority</a>, to which <a href="http://blogs.microsoft.com/on-the-issues/2015/04/03/microsoft-announces-pilot-program-to-hire-people-with-autism/">Microsoft launched an initiative to hire people on the autism spectrum.</a> And there are housing options for autistic people, although many tend to look more like segregated housing than inclusive living environments. But these services tend to be few and far between and don't quite address all the challenges of adulthood that we all face.<br />
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I may be one of the lucky ones who has managed that adulthood transition well enough, but it was extremely tough getting there. None of the services described above were available for me when I turned eighteen in 2005, and even if my family and I had found any of these resources I don't know if I could've benefitted from them, or even if I could've qualified for them. The talk therapy I needed on a regular and sustaining basis was not available in college (they only gave therapy sessions in emergencies, usually a one time visit), forcing me to go to a private practice. It was difficult to find and keep work of any kind up until I was offered a job at the agency I interned at during my last year of grad school. And despite my parents taught self-care and living skills, it's been difficult applying them when living on my own in both dorm rooms and apartments. Dealing with roommates was challenging, as was money management and everything in between. Hell, for all the healthy eating I grew up with I <i>still</i> have trouble maintaining a healthy diet limiting my Indian and fast food consumption to once a week. And no amount of exercise I do (which I also struggle to keep up with) will help me lose the weight I want to if my eating habits don't change. For all the luck and skills I have, I could definitely stand to "adult" better.<br />
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I'm glad to see the increased push towards adult autism services, but so much more needs to be done to make adulthood navigable and livable for people on the spectrum. And by more, I mean going beyond the programs and housing and job market to fostering an accepting environment for autistic adults to thrive in. This goes back to the concept of <a href="http://jumpingoutofthefishbowl.blogspot.com/2015/09/theres-no-one-right-brain-in.html">neurodiversity</a> - the belief that everyone has a different brain and that all of them should accepted and accommodated as such. Autistic adults may require different types and levels of support, but none of that will happen if we aren't regarded as being worthy of these supports and being allowed to join the wider world. The existing and emerging services have to respect and support our abilities and individual autonomy, and the world needs to open its arms out to embrace and welcome us into it. <a href="http://hcbsadvocacy.org/learn-about-the-new-rules/">(It will actually be required for any disability service and support program to be more inclusive in the wider community via federal regulations by 2019.) </a>No one benefits from being left out of society - everyone wins with acceptance and inclusion of those who are "different".<br />
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Adjusting to an autistic adulthood is rough, but it's not impossible. In helping autistic people build the right skill set and get the right supports and means to care for ourselves, navigate higher education, find and keep work, and get good housing, we can develop the means to muddle through the murky waters of adulthood. But it all comes down to accepting this hard truth - autistic children become autistic adults and adults deserve the same level of care and acceptance as kids. And if we're increasingly finding ways to make autistic kids' lives easier and more inclusive, shouldn't we be doing the same for the adults now?</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com1tag:blogger.com,1999:blog-3060938350791936355.post-34092590117132424582016-02-09T13:33:00.000-08:002016-02-09T13:33:16.065-08:00Those Overwhelming Feels of Being AutisticIf one of the biggest characteristics of being human is having many emotional states, there seems to be this weird idea that autistic people have an innate inability to understand or express emotions. This would in turn lead autistic people to become hard to connect to, let alone engage with other people. It's kinda like Spock from the original Star Trek series - a purely logical creature who has to constantly ask his crew-mates why human beings interact the ways that they do. Spock isn't a cold-hearted Vulcan with no regard to people's feelings, he just doesn't understand humanity and its workings on a fundamental level.<br />
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I find this to be a completely unfair assumption. It assumes autistic people don't have feelings nor can express them, and that we're cold people at best if not downright heartless. Having trouble processing feelings and understanding others' emotional expressions doesn't make us cruel, unfeeling people that can't connect to others. It simply means that we need understanding as to how things are the way they are so we can bond better with others. No one on Star Trek shuns Spock for his lack of understanding emotions - they help him by answering his inquiries to the point where Spock is accepted and forms deep attachments to his crew, especially Captain Kirk.</div>
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And as for me personally? I'm not emotionless. If anything, my emotions have dictated my entire life.</div>
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A lot of autistic people have what's known as sensory processing disorder (SPD), where certain sensations and stimuli can become unbearable. This usually involves things like weather and light, noise control, eating certain foods, wearing certain fabrics, etc. And while I do have a little bit of that in my life (I need to wear sunglasses outdoors during the day to avoid going blind, humid weather makes me weary and fatigued), I think I have more of an emotional processing disorder. Moments of sadness, discomfort, fear, anger, anxiety, and depression take over to an overwhelming degree that I have incredible trouble dealing with. These states are so powerful they affect my total state of being to the point where they rule everything I do. And it manifests itself in the worst ways possible.</div>
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I can say with a certain amount of authority that every meltdown I've ever had has been to do being emotionally overwhelmed. As a child, I would feel frustrated at things I didn't understand or had difficulty with. Out of that frustration came anger, sadness, fear, despair and before I knew what was happening I was melting down. I'd either become paralyzed with an inability to physically move or speak or I'd get into hyperactive violent bursts. People may have thought me unruly, but there was always some real feeling fueling my actions. And as much as I hated what I did in those moments and how it affected others, I simply didn't have the power to control them. As people would try to calm me down, I began to see these moments as bad and to be prevented at all costs. And since all my outbursts came from negative feelings, I understood that in order to not melt down I must never have a negative feeling in my life.<br />
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Imagine that for a minute - a child thinking that feeling sad, angry, depressed, anxious, and scared were inherently terrible and led to bad things, and thus must be avoided. Of course no one wants to be any of those things, but not having negative emotions isn't possible. Buddha recognized that, as one of his basic tenants is that to be human is to suffer. I couldn't accept that as a child and I felt no one told me it was normal to sometimes feel bad. Even as I've gotten better at managing my meltdowns with mental strategies and medication I still can't shake that basic concept. Accepting having negative feelings and managing and letting them ride out healthily is still one of my greatest mental challenges as an adult. I've got a long way to go.<br />
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It's a mistake to think of autism robbing people of the emotional spectrum. Everyone everywhere feels feelings, it's just a matter of how we process them. For some it's difficult to understand. For others it registers on a surface level. And for some others it rocks them to their core. There's no one set way anyone is supposed to feel, and that applies to autistic people as much as anyone else. We're not all Spock, we're human. And we all feel in different ways.</div>
Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-55962090462623592982016-01-24T11:03:00.000-08:002016-01-24T11:03:03.416-08:00Turning to Face the ChangeI spent this New Years visiting one of my closest friends in San Francisco. It was a great five days (despite having a nasty stomach bug the day I arrived) and it felt good to see her, as the distance between us (her in San Fran and me in Los Angeles) makes that kind of engagement rare. And it was exactly what I wanted it to be - low key, relaxed, and just shooting the shit with a really good friend in one of my favorite cities on earth.<br />
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We talked a lot about our respective years during that week and it got me thinking a lot about transition. The two of us have spent the last few years in graduate school pursuing degrees designed to groom us for specific professions so a lot of our lives have revolved around school and all the elements that come with it. But with me graduating last year and her about to graduate this year, we have come to terms with that leaving school means no longer depending on certain beats to center our lives. After graduation, you have to make it on your own.<br />
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One of the most consistent things said about autistic people is that they're adverse to change. Any disruption to things or patterns we understand throws us into a tailspin of frustration and chaos, convention says. I can't claim to speak for every autistic person on the planet, but I'm kinda in the not-cool-with-change camp. Why should I be? I make an effort to keep things consistent in a way that works for me. I like having certain things I can count on. Any change to that throws me for a loop to a point where I have major trouble processing it.<br />
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But change is an inevitable part of life. To avoid change is futile. And I can attest to that as 2015 was the year of huge change that was hard to adjust to.<br />
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<a name='more'></a>Last year marked a significant change for me in which I went from student to working adult. I spent a lot of my life in student mode where there is a lot of security. In school, there is a set schedule and expectations to meet - you have classes at certain times, assignments to complete by certain dates, and in the case of grad school meet and complete internship hours. It's set, predictable, and easy for me to follow as someone who always took to academia. School always made me feel comfortable in how set it was.<br />
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And then it ended. By May 2015, I had completed all my class requirements, wrapped up my internship, and walked across the stage at USC with a diploma in my hand. School was over. And I wasn't sure what was next.<br />
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Okay, that last sentence isn't quite true. I got extremely lucky when the agency I interned at offered me a job right after graduation as the assistant to the organization's executive director (which was basically what I was doing as an intern), so I didn't feel an overwhelming need to search for work. And I had my own apartment where I lived for the past two years. By those means you could say I was pretty damn well off. What could be so challenging about that transition?<br />
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Well, that's where my anxiety kicks in. Now I had to worry about job performance - how can I ask for help as a professional and not as an intern with a learning curve? Would I be up to the tasks required of me? How do I not get overwhelmed at work? And then there's the financial aspect of it: now that I'm getting paid, how the hell do I budget? I gotta worry about bills I never thought about - gas, power, cable, rent, healthcare. And what do I even do with my new spare time after work? It's all overwhelming and I'm shocked I've made it six months through without flipping out over it.<br />
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Maybe the reason why I haven't completely melted down over these changes is because my parents and I found ways for me to manage how to handle the new challenges of my life. Because I was hired at a place I had previously worked for, it wasn't a huge deal to create a new routine schedule revolving around when to come into work five days a week from 8 am to 4 pm. I'm also a salaried worker so I know exactly how much I'll get paid in a given two-week period. My parents found most of my bills could be paid online so I didn't have to think about mailing bills on time. I'm still trying to work on what to do with my recreational time after work so I don't fall asleep at 7pm and restore my social life from its non-existent status during grad school, but that does take time. They do say Rome wasn't built in a day.<br />
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I think maybe the answer of how to handle change is to step back, process that things will be different, and tackle adjusting to one thing at a time. It's scary for anyone to adjust to a completely new mode of life, let alone someone on the autism spectrum. And expecting to tackle all the things at once is not realistic nor healthy. So baby steps seems to be where it's at when adjusting for major life changes. It's not just easier, but relieving for all involved. And once all is said and done, you have a new normal to count on.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-23946779316308586792015-12-07T12:35:00.000-08:002015-12-07T12:35:00.112-08:00A Very Merry Autistic Holiday?It's no secret that large gatherings of any level can be incredibly overwhelming for those on the autism spectrum. There's so much happening on both social and sensory levels that it gets stressful just thinking about it. There's the sheer amount of people in the immediate vicinity, the high expectation to talk to all of them in the right way, the preparation of the event in question, how to present yourself...it's all kinda much for anyone to handle. And if you're autistic, it's downright terrifying.<br />
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On top of being autistic, I have a ton of social anxiety. While it looks like I can increasingly handle myself well enough in group settings, I'm riddled with fear that I have no idea what I'm doing. Am I connecting with enough people? Am I engaged enough in the conversation? Am I hogging conversation too much? Am I maintaining the appropriate amount of eye contact? Nodding in the right places? Truly listening to people? All these things people take for granted requires a tremendous amount of thinking and planning, and it's so overwhelming just writing it gives me the shivers.<br />
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And what's a hallmark of the winter holiday season? Social gatherings, particularly holiday parties and family time. The two most stressful situations for almost anyone, let alone for someone who innately has trouble socializing to begin with.<br />
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I've been described as more socially adept than the average autistic person to the point where most people wouldn't guess I even fall on the spectrum. Hell, autism is often equated with introversion and I register in between an ENFP and ESFP on the Meyers -Brigg Scale. But the quickest way to bring out my social awkwardness and ineptitude is throwing me in a crowd of more than ten people and watch what happens. To quote myself in a <a href="https://factfamily.org/as-a-matter-of-fact/a-very-merry-autistic-holiday.html">blog post</a> I wrote for work almost a year ago, "I personally tend to clam up, avert my gaze from everyone, search for any opportunity to speak only to have no room to say anything, and my brain turns everyone’s words and voices into Charlie Brown’s teacher on fast-forward. WAAHWAAHWAAHWAAH WAAAAAAAHHH." I try to remedy this by isolating people to engage with one-on-one (the best way I've found to socially engage with anyone), follow a conversation to the nth degree so I can figure out when to say something, and turn on my charm meter to maximum levels. But none of this erases my anxieties - I never know if I'm ever doing the right thing and I still feel somewhat excluded in the scene.<br />
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I find this especially hard in the family setting. My family is extroverted to the point where everyone's got something to say and it's practically impossible to find a good point to jump in when everyone's going a mile a minute to the point where's no room to breathe. There's also the issue that because everyone has an opinion, there's a sort of fight for dominance of conversation. My brother recently told me that he finds this dynamic troubling to him as well, so at least I'm not alone in this sentiment. But I have the added anxiety of wondering when I can bring up the things I'm interested in. I try to talk about my special interests in entertainment and history when I feel like it might be relevant to things my family would be interested in, but I am sometimes met with the following sentiment:<br />
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"Zoey, think about if people are interested in that before you talk about it."<br />
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Well how do I know if they aren't interested if I don't bring it up? That doesn't help my anxiety.<br />
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In all fairness, things are starting to get better. I'm trying to take more control over how I operate in these settings. The one-on-one engagement helps a lot as well as purposely isolating certain larger conversations where I can better engage. I also take a lot of time to mentally prepare for counteracting negative thoughts about how I'll do and focusing on the present moment without judgement. And when it comes to family events, I try to actively take part in the preparation as a means of establishing some sort of control over my setting. This almost always involves cooking, which I'm told I'm good at but need constant reassurance that I know what I'm doing. I can only imagine how annoying it might be to constantly ask for that validation, but I'm working on it.<br />
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So this holiday season, make sure anyone autistic you know feels welcome and included. Help them prepare for the whirlwind that is having to socially engage with a ton of people. Include them in the preparation process so they have something to talk about. And if they need a break from the party or conversation, give them that break and support that decision. Sensitivity is key.<br />
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I have a lot to work on when it comes to large social gatherings. I still need to figure out juggling conversations and not dominating them. I have to not assume the worst when it comes to how others perceive me. I have to believe in myself that I can get through a party without becoming down. And I have to believe that people want me there. But I'll get through it. I've survived much worse, which I'll get into soon.<br />
<br />Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-29415294128820602342015-11-01T14:00:00.001-08:002015-11-01T14:00:53.651-08:00Autism Does Speak, But Who Exactly Is Talking?I'm relatively new to the autism world. Having only recently begun to accept my diagnosis, I can't claim a long history of sharing my autistic life story let alone advocating for myself on a large scale. And sharing my diagnosis with people is still somewhat tough for me - I don't know whether or not they'll A) believe me, B) not believe me, or C) judge me harshly for it. I'm playing a brave but dangerous game in disclosing my autism because I don't know what the outcome will be. And if there's anything I fear most in the world, it's uncertainty.<br />
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I should feel like this is a baseless fear. Life has taught me that when I tell someone I'm autistic, they tend to take me at my word. I'm not entirely sure why this is - is it because I come off just quirky enough for someone to think something's up with me? Is it because I've developed enough language skills to pinpoint my condition? Am I perpetually surrounded by liberally-minded people? Or is it because I've come up with a basic script for explaining my autism:<br />
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"I'm autistic. This basically means I have trouble socializing, looking people in the eye, and can be an overall socially awkward penguin."<br />
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Whatever it may be, it's seemed to work out well for me. My entire family knows and has been supportive of me and my efforts. My friends are all eager to learn from me about autism and show complete understanding. And most remarkably, I've gotten opportunities at work because of my open disclosure of my diagnosis - <a href="https://factfamily.org/as-a-matter-of-fact.html">I write for my workplace's blog</a>, participate in community meetings around laws and services affecting autistic people, and have recently joined and publicly presented on behalf of my local regional center's Board of Directors. To say I've gotten extremely lucky is an understatement - I've largely been met with nothing but support for being autistic. And I'm forever grateful that people in my day-to-day life presume that I know what I'm talking about when I talk about autism. <br />
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So why is this generally <i>not</i> the case in public conversation about autism?<br />
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The more I look into and participate in the autism community, the more I find that me and my fellow autistics aren't really regarded as the authority of the larger autism conversation. That conversation seems to be dominated by parents and professionals. I'm not gonna begrudge parents and professionals for their input - outside of autistic people themselves, they deal with autism more than the general public does. And people who don't deal with autism on a daily basis need some kind of insight of what growing up with and dealing with autism from those who do on one degree or another. And I completely understand that in theory.<br />
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The problem is when parents and professionals are touted as the <i>only</i> experts on autism. Professionals who work in the autism field, like any other professional in any field, are treated with reverence as experts because of their careers studying it. Their study/work is treated as be-all, end-all and so they get to be an authority whether or not it's actually deserved. Parents, on the other hand, experience autism on a personal level - their everyday involvement on their autistic children looks relatable because anyone can sympathize with dealing with something difficult on some unconscious level. But both these groups largely lack one major thing - <i>they don't actually experience being autistic themselves</i>. They're both outsiders looking into a condition they don't personally know. And for some reason, that's more relatable than actually being autistic.<br />
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Autism is largely thought of in the medical model, being that autism creates significant deficits in affected people. This means autistic people's communication and socialization issues, sensory sensitivity, atypical and/or repetitive movement, deeply focused passion for specific subjects, and constant need routine and order are treated as barriers for them to fully operate in society at large. Many parents and professionals spout this perspective when detailing their experiences with autism - relentless focus on the negative effects autistic people looks more enticing to the average viewer than the more nuanced view autistic people have about their own lives. And if there's anything people gravitate to, it's the negative.<br />
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But living with autism is a whole different story. Having all the aforementioned hallmarks described above is its own experience and working with them to get through each day shapes my world in a way that is just as genuine and valuable a perspective as any parent or professional working with me. Autism affects my life the same way being a Jew and a woman does - it's part of who I am. It's definitely not easy being autistic - I still fear that I'm not saying/doing the right things in social situations, any significant change to my routine is hard to adjust to, and I often get emotionally and physically overwhelmed to possible meltdown in the wrong circumstances. But my focus and passion on making the most out of my life given major obstacles, both personal and societal, really means something as a narrative. My experiences and thoughts about being autistic in a neurotypical world are just as valid as any parent's and professional's. That shouldn't be devalued or treated not as important as other perspectives. To presume my story isn't worth something is to presume incompetence, and I nor any other autistic person is incompetent.<br />
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So what would I recommend in fixing this deficit-based perspective? Check out as many resources by autistic people as possible and really listen to them. Amythest Schaber's <a href="https://www.youtube.com/playlist?list=PLAoYMFsyj_k1ApNj_QUkNgKC1R5F9bVHs">Ask an Autistic</a> series has a lot of great autism FAQs. Lydia Brown's <a href="http://www.autistichoya.com/">Autistic Hoya</a> blog details the political and societal issues surrounding autism, disability, race, sexism and more. <a href="http://theinvisiblestrings.com/">Invisible Strings</a>, <a href="http://musingsofanaspie.com/">Musings of an Aspie</a>, and <a href="http://www.squidalicious.com/">Squidalicious</a> (a rare example of a great parent blog) are also some blogs worth checking out outside my own. Follow <a href="https://www.facebook.com/autisticlivingnow">Autistic Living</a> (curated by me!) and <a href="https://www.facebook.com/thinkingpersonsguidetoautism">The Thinking Person's Guide to Autism</a> on Facebook for articles and resources about autism. And of course, <a href="http://jumpingoutofthefishbowl.blogspot.com/">follow this blog</a> for my own story and thoughts on autism. There's a lot of great stuff out there by autistic people - all it takes is a curated Google search and an open mind.<br />
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If there's anything I've learned, every perspective is valid and devaluing some perspectives for others is inherently dehumanizing for everyone involved. Everyone experiences autism differently, but we actual autistics may be the most valuable yet under-utilized resource on describing autism for everyone else. I want the world to treat autistic people the way I've been treated in my day-to-day life - a critical authority on describing what autism is like and worthy of respect. And the more autistic people are included in the autism conversation, the better off everyone will be in understanding autism as a whole.<br />
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Autism does speak, but it <i>really</i> is spoken from autistic people themselves. There cannot be anything about autism without involving autistic people ourselves. We know ourselves better than almost anyone else. And it's time to take us autistics seriously and listen to us.<br />
<br />Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com4tag:blogger.com,1999:blog-3060938350791936355.post-15856384591409183522015-10-22T11:38:00.000-07:002015-10-27T09:58:00.871-07:00Neurotribes Made Me Emotional, And That's A Good ThingI may be autistic, but I'll be the first to say there's a lot I don't know about autism. My recent forays into learning about autism and the wider autism community have shown me that there's a ton of things that explain a lot about myself (my quirky habits, my abhorrence of change, my ability to get emotionally overwhelmed) and how much I have yet to know about autism as a whole. The more I explore on the Internet, in books, and in relating to other autistic people, the more I get invested in the subject.<br />
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So when a friend told me she attended a TED Talk conference where one of the speakers talked about autism, I was beyond intrigued. For months I waited impatiently for the talk to make its way online and when it was finally uploaded, I found something incredibly unique - someone who looked into how autism was "discovered" and how it came to be perceived.<br />
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Watching this got me intrigued. There's plenty of accounts and blogs detailing about what it's like to be autistic, what it's like to parent an autistic kid, and the many scientific studies into what autism actually is, but not really much of a history of autism. I probably mentioned here before how I'm a history aficionado so of course this quickly became a favorite video. And when I found out this presenter, science reporter Steve Silberman, was coming out with a book on autism's history, I pre-ordered it as fast as I could. In a world where autism is discussed in either cold clinical terms or overwhelming emotional rhetoric, this posed an alternative view I desperately wanted to see - an objective look at autism by examining its historical roots.<br />
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<a name='more'></a>Despite receiving my copy of <u>Neurotribes: The Legacy of Autism and The Future of Neurodiversity</u> about a week after it's release (free shipping on Amazon Prime-less accounts annoyingly delays your delivery five to eight business days and I have to budget carefully as a social worker) I devoured it in about two days. This should be surprising given that it's thick at over 500 pages, but it was written in such plain English that it was easy to understand. It's full of "great men" profiles as it seems autism's history seemed to revolve around big personalities in the field but there's also profiles of real people who live with autism on a daily basis. And when I was done, I had a million and one questions about what I had just read. And if a history book can leave me with a million and one questions, it's a damn good book.<br />
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What I did not expect is how much it hit me emotionally. I spent my life feeling alone in my autism. The doctors who diagnosed me told my parents they weren't sure if I'd have an independent life. There were not a lot of helpful resources or services that would give me an autistic community of my own. And <u>Neurotribes</u> showed me that was a pretty intentional move. Downright ignoring Hans Aspergers' theories of commonality of autism occurrence and need for inclusive services in favor of Leo Kanner's pathologized psychosis "life-destroying" model of autism made my condition something to be feared, and that it pushed me away from "normal folk". No wonder I was rarely invited over to play with other kids growing up - people were scared to deal with a girl as different as I was (although my meltdowns may have been a more salient reason for peer ostracism). Even with the '60s-'80s parent movement to make services more available and inclusive, there wasn't much of it that really addressed my sense of isolation and "otherness".<br />
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(That's not to say there wasn't any benefit from immersing in the non-autistic world. My parents got me as involved as they could in "normal" childhood activities and encouraged the people involved to be as understanding and inclusive as possible. I went to a mainstream summer camp with supportive counselors, I was active in my synagogue's youth groups, and took singing, cooking, and acting classes with my neurotypical peers. And through that I learned to socialize and get a sense of belonging in a way that I'm not sure I would've had if I was more isolated.)<br />
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After reading the book, I also found it amazing my parents always believed in me. Even with the movie "Rain Man" showcasing autism on a wide scale, my parents managed to not give into the panic accompanying the broadening diagnostic criteria of autism during the 1990s. My parents managed not to believe I was infected with something that would doom me for the rest of my life. And they certainly didn't buy into the fraudulent "vaccines cause autism" "study" of 1998. Maybe it's because my parents wanted to educate themselves about autism. Maybe it's because they kept up with Temple Grandin. Or maybe it's because, as my mom told me, my parents aren't people who run from or despair at challenges but rather believe all their kids deserve a good shot at life. <u>Neurotribes</u> showed me I am lucky indeed to have them. And that's not nothing in a world where autism is still described as a scary "epidemic" and something to be "fixed".<br />
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But most importantly, <u>Neurotribes</u> taught me there is indeed strengths in autism that cannot be ignored. It's not a bad thing how one of Leo Kanner's patients could memorize hundreds of symphonies as a toddler or Hans Aspergers' kids showing incredible affinities for science or engineering. As much as I down myself for my anxiety socializing and difficulty managing my emotions, I can't help that I have an unique insight into history, politics, entertainment and social issues. My brother once told me that he admires how I see the world differently, and that means the world to me. And I've been fortunate that I've had teachers, peers, and friends who see that and encourage me in asserting myself. I'm working on appreciating that more.<br />
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I'm aware the criticism leveled at the book revolves around it "glossing over" the difficulties autism presents in favor of highlighting its positive attributes. I was lucky enough to interview Silberman for a San Francisco-based zine I write for <a href="http://popfront.us/2015/09/rewriting-autism-an-interview-with-steve-silberman/">(seriously, check it out)</a> and he's the first person to say that autism is "fucking hard". He accurately points out how natural it is to people to look at autism and immediately notice its challenges before anything else. But he says hope is key because no one can accurately predict how an autistic person will turn out. To paraphrase him, growth is always possible even in moments of struggling and society should give autistic people that benefit of the doubt. And as someone who often feels like my life is a never-ending struggle, it meant a lot to hear Silberman say that. Not many people would even think that let alone say it out loud.<br />
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So from the bottom of my heart, I thank Steve Silberman for writing <u>Neurotribes</u>. It not only gave me a sense of the history of my condition but a real evaluation of myself and my life. It made me truly appreciate my lot in life and solidified my commitment to ensuring other people have the same benefits I had. And given it hit the NY Times bestseller list, I'm excited that a lot of people are interested in expanding their views on autism beyond its deficits. It's giving me hope that people will see autism as both complex and capable of positive things. And with that, I hope <u>Neurotribes</u> will let people accept me for me.<br />
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<br />Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com1tag:blogger.com,1999:blog-3060938350791936355.post-7893137539197857552015-09-19T16:30:00.000-07:002015-09-19T16:30:01.934-07:00There's No One "Right" Brain in NeurodiversityGrowing up autistic in a non-autistic world often meant feeling perpetually alone. Once I knew I was different, I felt separate from everyone else and nothing would ever make me like anyone else. I felt no one would ever understand me, much less help me shed my shitty self-esteem. If no one else was like me, how could anyone "get" me? And no matter what I was ever told by anyone, I felt that being autistic was akin to being lesser. Being autistic meant being more trouble to everyone else. And worst of all, being autistic was <i>wrong</i>.<br />
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In other words, I really, really wish I knew about neurodiversity a lot sooner than I did.<br />
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Neurodiversity is a fairly easy concept - just like there is diversity in race, religion, ethnicity, sexual, and gender, there is a diversity in human brains and minds. The differences in neurological configurations, in neurodiverity theory, are just as natural as the differences in the aforementioned areas and should be treated as such. Neurodiversity can be enriching in accepting communities and societies, but in reality is often met with prejudice and hostility by pervasive ideas of there being only one "correct" way of being, acting, and thinking. So just like any other minority group, those with neurodiverse/neuroatypical brains (ex. ADD, OCD, Downs syndrome, autism, intellectual disorders, mental illness, etc.) must be afforded the dignity, rights, respect, and accommodations that the majority enjoys.<br />
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Needless to say, neurodiversity advocates there's no "right" brain everyone must have.<br />
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There's a radical acceptance that comes with the concept of neurodiversity that I find is hard for people to get on board with. Common thinking of the neurodiverse brain - particularly intellectual and developmental disorders - is deficit-based. We look at those minds and focus on the abnormalities and challenges the disorders present, putting the problem on how the neurodiverse person who doesn't act "normally". This deficit-based focus, often called the "medical model" of disability, limits how we see the neurodivergent into seeing them as a individual "problems" and as "wrong". And in a world where we all face pressure to be "normal", anything that doesn't look like a socially acceptable/appropriate response to any stimuli freaks people out and they jump to the negative conclusion and a view that the "inappropriate" response should be "fixed".<br />
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What gets left out is looking how society at large presents problems for thosewho are neurodivergent to operate. The appropriately titled "social model" of disability looks at how societal attitudes, systemic barriers, and social inclusion/exclusion foster a world where the neurodivergent struggle to fit in. This includes reactions to behaviors deemed "abnormal", who is presumed to be the experts on neurodivergent conditions, and how neurodivergent people do and are "allowed" to participate in their outside communities. Just like racism is a systemic problem affecting every part of life for people who aren't white, the social model of disability argues society and systems are the biggest challenges for the disabled more than their presenting conditions.<br />
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Think of it this way - a person in a wheelchair needs to get into a building that only has stairs to its entrance. The medical model says the person can't get into the building because of the wheelchair limiting their mobility. And the social model says the person can't get into the building because the building didn't think to install a ramp for people like that person.<br />
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I feel as though my life has been lived out in between those models. There's no denying that I had personal troubles in how I experienced the world - my late social readings and development, perpetual anxiety and depression, and frequent meltdowns as a child did not help me in adjusting to the world. Self-improvement in behavior and socializing has been necessary for me to cope with all of that. But the world didn't make my life any easier - I've had teachers and fellow students gave me a hard time whether through ignorance or downright callousness. My family and I were in a constant battle to get accommodations throughout my life from one-on-one aides from elementary to high school to supportive social environments. I've been let go from jobs with little to no explanation. And throughout it all, I felt as if <i>I</i> was the one under pressure to conform to everyone's expectations and that world at large would never give me any the help I needed.<br />
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But I've had the fortune to see what happens when society and systems <i>do</i> accommodate and accept me as I am. For the few teachers were rough on me, I had a lot of teachers who saw my strengths as a student, particularly my history and English teachers, and both encouraged me in school and advocated for me among my fellow students. (I actually wouldn't have taken AP classes were it not for hearing through the grapevine that my ninth-grade history teacher wanted to recommend me for it.) Being allowed to live on campus during undergrad provided me some relief as I went through classes. The social work program at grad school was more than willing to help me through course overload by spacing out my academic tenure and allowed me to create my own internship at my future workplace. Said workplace also has accommodated and supported me in giving me breathing room with work while encouraging me to pursue community and leadership opportunities. The friends I've made have stuck by and supported me throughout everything, from my good moments to my bad times. And all of this was possible because people were able to see that it was worth accommodating and accepting me as I am.<br />
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If there's anything I have learned about neurodiversity, it's that there isn't a "correct" way for someone to successfully operate in the world. Yes, people do have their own struggles that come with a neuroatypical brain. Many everyday things are hard for us. But with the right supports, services, and opportunities, anyone can live a great and fruitful life. All that's needed is a societal acknowledgement that it's alright for neurodiverse people to exist and be included as a whole. I've seen it work in my own life, so I don't see how we can't move forward with acceptance.<br />
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Let's get rid of pathologizing neurological differences and start giving us neurodiverse people a chance. I know it seems hard but as John Lennon once wrote: "it's easy if you try." So let's all just give it try. There's no harm in trying.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-3501923536127959292015-08-15T11:40:00.000-07:002015-08-15T11:40:00.206-07:00The Hesitant Anglophile, or How England Helped Me Come Into My OwnI don't think it's a stretch to say Americans have longstanding obsession with the United Kingdom. It probably comes from the fact that the US was one of their former colonies and the first to fight them for independence, but we've never truly separated ourselves from the UK. Our histories are intrinsically entwined and we've always been dependent on establishing some kind of alliance together, for better and for worse. And if Hollywood trends are anything to go by, the next generation of popular actors and shows are coming exclusively from the British Isles. America has British fever, and it's probably never going to go away.<br />
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I cannot claim to be exempt from this rule, as the title of this post suggests. Ever since I was a child I have attempted to perfect the golden standards of the British accent. (Last time I checked, someone told me I sounded more Australian than English.) I watched Monty Python and Eddie Izzard on repeat throughout my teen years. I have an unhealthy obsession with British television from Doctor Who to Luther to My Mad Fat Diary. Many of my favorite actors, singers, and bands are British (including my celebrity crush, who I'd rather not name here). I've always been fascinated with British history as the sort of real trendsetters of Europe - particularly the Tudor era where Henry VIII and his descendants pretty much began modern England with petty marriage politics and paranoia. Many of my favorite plays come from England, from Shakespeare to George Bernard Shaw. I can't escape it - I will forever be fascinated with the United Kingdom.<br />
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The key world here is "fascinated". Whenever I hear someone say they're an Anglophile, I generally find that they think the sun shines out of the UK's ass. And if life has taught me anything, the grass is always greener on the other side. I recognize the United Kingdom has some serious issues - I don't understand how anything gets done in their parliamentary system, there's major class divisions affecting their current political and cultural landscapes for the worse, and they gave us <u>Fifty Shades of Grey</u>. No place is perfect, just as no one can be perfect themselves.<br />
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That all being said, I still adore the United Kingdom. And the reason why is that life has given me two major opportunities to love the nation - a theater partnership with a British theater school and a semester aboard in undergrad. And those experiences have truly helped me come into my own.<br />
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I first traveled to the UK I was ten. It was a family trip coming after spending a week in the south of France for my grandparents' fiftieth wedding anniversary. The memories I have are vivid - having a perfect view of a dead pigeon on top of a wire net outside our hotel room, watching a half-way decent West End musical about Buddy Holly, trying calamari for the first time in a Greek restaurant, being scarred for life by the torture exhibition at Madame Tussaud's, having the bare minimum of fun at (at the time only) Legoland, and sequestering myself with the crown jewels and memorizing every British monarch to erase the beefeater's Tower of London horror stories. I loved every minute of it and vowed to go back as soon as I could. I just didn't know how soon that would be.<br />
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Then by sheer coincidence I joined a theater company in high school that had a sister theater in the UK. For two years my family hosted fellow teen actors from the British Isles and I felt a kinship with them that I often didn't have with my American compatriots. I don't know if it was due to the shared love of acting or just general good vibes, but either way I felt like I could be myself without judgement. And when my theater company offered a trip to the sister theater when I was 18, I jumped at the chance. The two week excursion involved endless theater workshops and attending plays in London, and eventually performing at the sister theater just northeast of there. It shouldn't be surprising that I had an awesome time, and being able to hang out and act with my British peers felt beyond comforting. And it led me to making a solid vow that I would spend at least some part of my college career there.<br />
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That's where my fall semester abroad my last year of college comes to play.<br />
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Applying for a semester abroad was not easy. First, the application process was long and testing. I barely managed to gather my grades and recommendations in time and threw a fit in the international students' office close to the submission deadline. (I had to write a long apology letter saying I'd check my behavior once abroad.) There were also few programs that offered what I wanted - a fall semester at an accredited UK university as opposed to a sister campus in London - so my options were limited. Luckily, I managed to get accepted into a school about two hours northeast of London. Objective one achieved.<br />
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And then there were my parents. They had (understandable) concerns about me being a continent and ocean away without my immediate support network. My father was particularly worried about me up to the day I left their company, constantly imagining the worst. I get why they were so nervous - I'd be alone in a foreign place for three months and it wasn't for certain that I'd be able to cope on my own without any reliable aid if things went wrong. That worry even went as far as my parents staying in London with me during my first week orientation. (Granted, we did go on a biking trip through the Netherlands the week prior, but still.)<br />
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Would I be able to function in a different country? Could I keep it together? And would it even all be worth it?<br />
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The short answer? Yes, yes, and hell yes.<br />
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Turns out all that fretting was barely worth it. I made friends, adjusted to classes meeting once a week (though I could barely be assed to do the reading without set deadlines lol), and established familiarity with the campus and city pretty quickly. My mom and I set up a weekly phone call with my therapist back home and I utilized the mental health services the school made available, but I barely needed it. And while there was the occasional cry on the phone to my parents, I managed to make it through the three months with barely any panic attacks or meltdowns. I even managed to have a few brief flings with guys - the most action I got my entire college career. I was busy and content in a way I had never been in my life before or even since.<br />
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The prime example of my adjustment to the UK was when my father visited me in London. He had a day-long layover in London while returning from a business trip in Germany and I was in the city at the same time for an university-sponsored "Thanksgiving" dinner. We spent the day navigating the London Underground (with a few hiccups in direction and what train to take) and at the British Museum together. By the time we parted, my father had noted my ease with navigating and adapting the complex London landscape and joked with my mom upon his return that I might as well be British.<br />
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Why did I do so well? I'm still not sure. Maybe it's because I knew I couldn't afford to panic lest I get kicked out of the country. Maybe it was being in a new yet oddly familiar environment. Maybe it was I was surrounded by people who were easy to get along with in a way I never felt back in the States. Or maybe it's because I felt like I finally got what I wanted for so long. For the first time I felt like I had pursued something and it paid off in spades. I felt a sense of accomplishment in a way that I never felt before. And by staying in the United Kingdom over a long period of time, I found that if I set my mind to something I desperately wanted I could succeed at it in spades and be happy about it.<br />
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And so I thank the United Kingdom,for giving me what I always needed - the confidence that I was capable of anything I set my mind to. I'm not sure what I'd be without my British experiences, but what they made me has definitely been for the better.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-52980433036870693592015-07-27T10:49:00.000-07:002015-07-27T10:49:00.277-07:00A Spectrum of Highs and Lows in College: Accommodation, Education, and Socialization in Undergrad<a href="http://jumpingoutofthefishbowl.blogspot.com/2015/06/a-spectrum-of-highs-and-lows-in-college.html">I left my previous post about my college career in a second start to school.</a> The first six months of undergraduate education was spent on medical leave pending adjustment to the academic and general living rigors of higher education. It was not how I wanted to spend the majority of my freshman year, but it was what it was. It forced me to re-evaluate what I wanted and what I wanted was confidence to prove I could handle college. So I returned to northern California with a steely determination to make it through upper academia far from familial support and create the best undergraduate experience possible.<br />
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How did I do? Pretty damn well considering that previous hiccup.<br />
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<a name='more'></a>First, I needed to establish new supports. After inquiring about psychological services at school, I found they only offered emergency therapy situations as opposed to weekly sessions. My parents found a great therapist in town who I saw once a week to relate my struggles to, and she'd support and challenge me to make the most of college life. Then my parents and I found the disability services center and convinced them to give me guaranteed single-room on-campus housing for the next four years. (That was a miracle considering students tended to be pushed off campus after two years.) And living on campus meant having a meal plan I could rely on, even if it meant gaining a lot of weight in the process. Having those in place helped immensely gain some kind of certainty that some things were fundamentally taken care of.<br />
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Next, I had to get through classes. I tended to be the kind of student who loves challenging myself, so I often took more than the average amount of classes offered. I'd sign up for the classes I needed, crash the ones I wanted, and made a point to visit the professors after almost every lecture or during office hours. I went to a large state school with large classes so stopping to talk to professors wasn't easy. Yet doing so made me stand out as someone who wanted to be there and interested in the course. And in the case of crashing classes, I ended up making the final roster most of the time. I'd also let the professors know about being autistic and we'd arrange between the two of us appropriate academic support (namely extra time on tests or assignments as needed). I ended up doing pretty well as a result - receiving a series of Bs and As throughout all four years.<br />
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I'd like to take a minute out to say I got really lucky with the professors I had. I didn't meet any resistance from any professor I encountered when disclosing my autism to them and getting the help I needed. I want to say that's because I developed a script that placed those things in how I could largely take care of my issues myself and was willing to adjust to what expectations were required. (It also helped that my particular professors tended to be pretty amiable as a whole.) Honestly, if I had encountered someone a lot less willing to accept and accommodate me, I probably would have dropped out of that class. I didn't need to stress myself out over my learning if I didn't have to. Plus I generally refuse to engage with someone who'd just make my life harder as a rule of thumb.<br />
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The hardest part was establishing a social life. I found most people established their friendships during the first year that lasted throughout their college lives. Thus having spent half the year away from my college peers did a lot of damage on that front. It's always been a nerve-wracking process to make and solidify friendships, and I lacked the ability or nerve to look up social groups and opportunities on campus to fix it. I had a lot of lonely nights as a result - I spent a lot of time on the internet, going to movies and exploring campus by myself, and crying by myself or on the phone with my parents about how isolated I was. I went to way too many movies by myself.<br />
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That's not to say I didn't have <i>any</i> social life. I joined the school's drama department after taking an acting class and being cast their student drama festival my sophomore year. I've always loved acting (I'll go into that in more detail about that later) and being in a play allowed me to spend time away from solitude in my dorm room and interact with people outside the classroom. I loved the cast I was with and the people involved in the festival, leading to declaring a drama minor alongside my history major. Being a theater minor allowed me to take more classes in a field I loved and working on plays both on and offstage gave me excuses to hang out with people outside of class. (Although I learned pretty quickly that I was not cut out for stage management - the pressure was too high.) And that old stereotype of theater kids being an offbeat crowd meant my autistic self was welcomed with little to no question. It definitely made college life a lot more bearable.<br />
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But the long-term friends I gained came from the random chance of my major. Being a history major meant you had to pick out one of three concentrations (mine being European history) and the wide selection of classes meant that you were probably unlikely to run across the same people twice. And yet by chance the two friends I still keep in touch with came from sharing multiple classes with them. Both girls were history majors (an obvious commonality), both shared my love of politics, and both were incredibly easy to hang out with and accepting of my quirks. Both currently live nowhere near me - one's in northern California, the other just moved to Texas - but I still call and message them pretty frequently. So many of my friendships with my fellow college students were restricted to the time we spent in class together, but these two girls have proven to stand the test of time by being more than willing to take me as I was and keep up with me past whatever circumstance brought us together. And I cannot be more grateful for that.<br />
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By the time I graduated in 2009, I largely felt like I had largely achieved what I set out to do. I not only survived college after a noticeable early bump, but I managed to make a good deal out of the college experience. Could I have had a better social life? Yes. Could I have gone to some more events and joined more groups on campus? Yes. But I got my college career and felt like I had truly accomplished something great. I proved to myself and everyone around me that I could set a lofty goal for myself and achieve it.<br />
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And if there's anything I feel most proud of in college, it was my semester abroad in the UK the fall of my senior year. But that's another post in itself.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-64993563333422020852015-07-06T10:07:00.001-07:002015-07-06T10:07:27.431-07:00The "Unlikely" Combination of Autism, Social Work, and EmpathyI almost ruined this past Thanksgiving because of a news story.<br />
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The day itself was fine - all the guests showed up, the food was good, nobody got in each others' faces about hot-button issues (a miracle considering the Ferguson protests dominated the news cycle at the time), and I managed to get along with everyone perfectly well. As far as family events went, it was a good one.</div>
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Bu after the meal was over and the guests left, I checked my Tumblr feed and saw a story about <a href="http://www.bbc.com/news/uk-england-beds-bucks-herts-30210199">two British policemen facing charges for chasing and assaulting an autistic Pakistani man.</a></div>
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My entire demeanor changed from being okay to sobbing beyond belief. I couldn't believe the cruelty these men had afflicted on a person I didn't even know. That story combined with the Ferguson coverage made me upset at people's cruelty and it all spilled out in tears. A family member found me crying and while she understood how I could be affected by such a story, she was perturbed that I would let a news story would make me break down.<br />
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In short, I may have let my empathy take over to the point of unhealthy display.<br />
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<a name='more'></a>One of the most common misperceptions of autistic people is that they lack empathy. This comes from autistic people generally having a hard time reading non-verbal social cues (body language, tone of voice, facial expressions, etc.) and reacting accordingly. Ergo, most people make the (seemingly) logical leap that if autism comes with a lack of social cue understanding then they can't be emotionally affected by others' emotional states. The reality is that social cue reading and emotional affect are two different kinds of empathy and the two get easily conflated into the general definition of empathy.<br />
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Let's break down these two different types of empathy:<br />
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<b>Cognitive empathy</b> is reading and comprehending the non-verbal expressions of someone's behavior and reacting in an appropriate manner.<br />
<b>Affective empathy</b> is being emotionally affected by someone's emotional state, like being happy by someone's success or sad when someone else is going through a hard time.<br />
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Now it is possible for someone (autistic or not) to lack both cognitive and affective empathy, but lacking one type of empathy doesn't mean autistic people are completely unmoved by others' situations. It's a matter of how they express it. In fact, general hypersensitivity autistic people experience can lead to having extreme emotional reactions to others' feelings and thus not knowing how to process and express it appropriately. So I'm not exactly an unfeeling person - I just may feel a little too much.<br />
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But if my social work studies have taught me anything I have to balance that emotional empathetic expression very carefully. Throughout my four years of graduate school, my professors drilled into my fellow students and I that empathy is more than just being able to express the cognitive and affective aspects. Empathy in social work is listening to others' feelings and life experiences, and being able to validate them. It's sort of a combination of both cognitive and affective empathy while understanding that you might not be able to personally relate to their experience. I like to think of it as the following quote from <u>To Kill a Mockingbird</u>:<br />
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"You never really understand a person until you consider things from his point of view...Until you climb inside his skin and walk around in it."<br />
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This has taught me a lot about how I currently relate to things and how to better relate to them. If there's one thing I've learned from my family it's to always hear people's stories out - you have no clue what someone else's life is like unless you hear it from their own mouths and give them credit for it. Is that difficult? Absolutely, but it's difficult for <i>everyone</i> autistic or not. To be able to step outside your own experience to understand someone else's is not a widely taught skill people are expected to master. Yet through my own life and working with others on the spectrum, I see more autistic people capable of that precarious craft than non-autistic people. Every autistic person I know <i>knows</i> they're different than others and that seems to lead to an understanding that everyone in the world experiences the world differently. And knowing that is quite extraordinary.<br />
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I know it's "controversial" to say autistic people don't lack empathy. But I think we as a society tend to define empathy too narrowly in simply reading other people's affect. It's about understanding what the person is going through, and being selfless enough to feel for them and validate them. And I honestly think society at large lacks that level of empathy. We all are taught to say "I'm sorry" when someone expresses going through something tough but not to actually process it past a surface level. We are not intrinsically taught to value others' life experiences to be as valid as our own. That lack of insight feeds into misunderstanding, fear, and hatred of things we do not personally know. And at worst, it can lead to bigotry, violence, and murder.<br />
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Assuming autistic people lack empathy is a perfect example of not being empathetic to others' experiences. So I would say when you see an autistic person not displaying commonly accepted signs of empathy, be respectful and ask them how they feel. Hear them out and understand that their expression is just as valid as yours, even if you don't personally get why. But most importantly, <b>take them at their word</b>. Listening to autistic people will give you a better understanding of autism than almost anything else. And listening and accepting an autistic person's point of view will strengthen your own empathetic muscles.<br />
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Empathy means a lot of things, but we will never truly understand or accept autism until we stop making assumptions about it and actually exercise it with autistic people.<br />
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Here's a good video demonstration of autistic expression of empathy:<br />
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Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com0tag:blogger.com,1999:blog-3060938350791936355.post-91452652657935339752015-06-22T09:30:00.000-07:002015-06-26T12:03:01.173-07:00A Spectrum of Highs and Lows in College, The Rocky StartI recently participated in a University of California study about autistic people who went to college and/or graduate school. In that study, I was asked about where I went, what my living situation was, my social life, and the best and hardest parts of my years in higher academia. Prior to then, I had looked back on my undergraduate years with a fondness and nostalgia of time well-spent. But when forced to be completely honest with a stranger, I realized it had been far more difficult and trying than I had thought it to be.<br />
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Truth be told, being autistic and in college is incredibly tough. But if there's anything I learned, it's not impossible and can have some real benefits. So as my overall career in academia comes to a close, let me describe my college life over a series of posts.<br />
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While it doesn't seem like there's an upside to learning you're autistic long after your diagnosis, not knowing meant that I never believed I couldn't have a fairly "normal" life. I didn't think that there wasn't anything I couldn't do if I put my mind to it. And a "normal" life meant that I could go to college, specifically a four-year university program, right out of high school. And being someone who took to academia well, it didn't seem like an unrealistic goal.<br />
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I prepared myself as best as I could for what I thought was to come. I took honors and AP classes and applied myself as best as I could. I threw myself into extracurriculars like marching band, orchestra, theater, and my temple's youth group and actually had fun with them. I challenged myself to apply to as many schools as I thought I was qualified for. And while I got more rejections than I would've liked, I ended up getting into four schools.<br />
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I was excited for college. I was eager to engage in higher learning and live away from my parents. I had chosen to go to school in northern California - seven hundred miles away from home - and felt that the change of scenery would help me become independent. And I was optimistic that I would have a full social life beyond the confines of high school, especially since I got into a special honors program for my mandated college writing class and would be living among others in that same program.<br />
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Needless to say, it was much harder than I thought it'd be. Especially in the first year.<br />
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My first three weeks were rough and almost destroyed my college career. While I really liked my classmates in the honors program, I had a hard time with the professor leading the program. It was particularly hard to hear her critique my work and my sensitivities to it showed. This led to a meltdown severe enough that I was placed on a six-month medical leave. I can't find the appropriate words to express how upset I was - it was if someone had pulled a rug out from under me that had just been placed there. I spent the leave bitter, angry, and in a perpetual funk that no one had trusted me to have the great college experience I was entitled to.<br />
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That being said, being put on medical leave was a better option than what I could've had. When I had that meltdown, my parents drove up to help settle the ruffled feathers. I hadn't told the school about being autistic. The first thing my parents did was inform the dean and housing coordinator about it. They then spent almost an entire day in meetings with the dean to talk about the situation and managed to talk them out of expelling me. It took a lot of negotiation to get them to agree on the medical leave with the ability to return to school once I had medical leave to do so. I didn't appreciate it at the time, but I can't deny that I'd be unhappier if it weren't for that intervention.<br />
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Despite said bitterness and funk, I didn't want to waste those six months doing nothing. Doing nothing would only make me more bitter and I was gonna have my college career no matter what stood in my way. As my family lives within walking distance of a university partnered with my primary school, I took advantage of the connection. I enrolled in history, statistics, and French classes to keep myself intellectually engaged. And with some assistance in the search, in three months I had moved into an apartment with three roommates to test my independent living skills.<br />
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I was fine academically - I never needed much help aside from the odd reminder to do homework I wasn't particularly keen on (mainly in math classes). Most of my high school friends still lived in Los Angeles, so I could keep up something of a social life. But independent living was the real challenge - if I could deal with roommates and take care of myself without parental reliance I could prove to everyone that I could make it seven hundred miles away. And that experience was largely fine - I got along with my roommates and felt just a little more comfortable with not living at home.<br />
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Once I went back to up north, I stayed in school for the next three and a half years. And even with some greater challenges on the horizon, I couldn't be prouder.<br />
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(To Be Continued)<br />
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EDIT: I want to acknowledge that I wasn't completely alone in doing what I did in those precarious six months. My parents were instrumental in finding me a place to live for the second quarter of school and ensuring that I was able to pay for rent and other necessities. I may have moved out, but they assisted me in the process. The apartment I moved into was also close enough to home where the could check up on me if I was having any trouble (which they frequently did).<br />
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I also want to say that I didn't exactly overcome my unhappiness during my medical leave. I was angry, depressed, and generally morose the entire time. It got to the point where I had a meltdown bad enough to warrant a trip to the emergency room (a few days I was meant to move out nonetheless). I don't remember any other similar incidents but I still felt bitter the entire time. The fact they even let me move out was a giant leap of faith on their part and I'm glad it paid off. That support was crucial to my overall growth.Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com1tag:blogger.com,1999:blog-3060938350791936355.post-25780337735430128122015-06-11T10:04:00.002-07:002015-06-11T10:04:50.402-07:00Music is My Boyfriend, My Girlfriend, and Autistically PowerfulI have almost 13,000 songs in my iTunes library.<br />
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You read that right. 13,000 songs.<br />
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You're probably wondering who the hell could listen to that much music in one lifetime. Well, I can. Or at least I can listen to my playlist of favorite songs over and over again. That playlist has over 2,000 songs and grows by the day. Put it on shuffle and I could always hear something different over five and a half days and not get bored. I constantly search for the newest and most interesting stuff and make playlists upon playlists of my findings. It pumps me up when I need encouragement and calms me down in times of trouble. And from the Walkman to the gift from the gods known as the iPod, I've never gone anywhere my music to listen to.<br />
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It's common for autistic people to have an incredible amount of passion in their favorite subjects to the point of developing expertise in them. This is known as having a "special interest", leading to autistic people being called "little professors". Like all things considering autism, it isn't universal across the spectrum but I've seen it more than enough times to understand how people come to that conclusion. I've got a plethora of these "special interests", and while I wouldn't call myself a genius in any of them I certainly keep up with them a bit more than your average bear.<br />
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But music isn't what I'd call a special interest of mine. I'm not a musician, although I have played piano and clarinet in the past. Music just helps me understand life and the world as we know it.<br />
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<a name='more'></a>It sounds cliche, but music speaks to me in ways I'm not entirely sure it does to others. Like musicians, autistics perceive the world in different ways and experience sensations on a more sensitive level. This hypersensitivity can manifest itself in severe rejection of certain materials or tastes, or being able to visually picture things others might not think of. Think of it as connecting complex patterns on rugs or <a href="https://www.youtube.com/watch?v=NTM48pwoXAo">this clip from Fantasia putting visuals to the sounds of different instruments</a>. I can always pick out a song in a crowded room and often know exactly what it is. I can pick out and appreciate any music's instrumental from an acoustic guitar to busy electronica. And I always create complex imagery accompanying everything I listen to, often with me as the star.<br />
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And yet, I would say playing music and autism are very similar because they can unlock new perspectives of the world. <a href="https://youtu.be/R0JKCYZ8hng">Much is made of how music listening and music making activates whole brain engagement and affects every activity one engages in</a>. And in learning to play music, musicians are better able to store and recall memories from a variety of sources. This is not unlike my own brain, where seeing a picture of a pigeon makes me recall every terrifying incident I've had with a bird. Temple Grandin calls this phenomenon "thinking in pictures" and <a href="https://youtu.be/MxxUhW7d8yI">musician Jonathan Chase can attest to that as both a musician and as an autistic person</a>. The level of detail musicians have to perfect is also common in autism, as the world presents lots of individual challenges that all seem impossible to deal with. But like a dedicated musician, careful and repeated study is how this autistic girl has learned to adapt to her surroundings. And all along the way, music remains my constant friend and never an enemy.<br />
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I can't imagine my life without music. It's helped me adapt and understand the world, and I am forever grateful for it.<br />
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Here's some videos about music and autism:<br />
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<br />Zoeyhttp://www.blogger.com/profile/01926780296427819124noreply@blogger.com1