Sunday, November 1, 2015

Autism 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.

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:

"I'm autistic. This basically means I have trouble socializing, looking people in the eye, and can be an overall socially awkward penguin."

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 - I write for my workplace's blog, 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.

So why is this generally not the case in public conversation about autism?

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.

The problem is when parents and professionals are touted as the only 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 - they don't actually experience being autistic themselves. 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.

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.

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.

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 Ask an Autistic series has a lot of great autism FAQs. Lydia Brown's Autistic Hoya blog details the political and societal issues surrounding autism, disability, race, sexism and more. Invisible Strings, Musings of an Aspie, and Squidalicious (a rare example of a great parent blog) are also some blogs worth checking out outside my own. Follow Autistic Living (curated by me!) and The Thinking Person's Guide to Autism on Facebook for articles and resources about autism. And of course, follow this blog 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.

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.

Autism does speak, but it really 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.


  1. I think part of the problem among neurotypical people is that some people with autism can speak and communicate, and others can't. When neurotypical people think of autism they seem to think of "Rainman" or "Mercury Rising," the people who do not have a lot of spoken language. So if you CAN talk or write well enough to communicate, they think, "You can't really be autistic because you communicate." If you CANNOT talk or write to communicate, they say, "You can't communicate like we do, so you probably are unable to contribute something important to the conversation." And when people with autism do find alternate ways of communicating (like some people I've read about who type or touch letters to talk) people say they're faking it!!!

  2. My son is 5 and currently non-verbal but he still has a lot to say! I try to my best to listen to him and I'm listening to you, so thanks for speaking

  3. I think another issue is that many autistic adults were not diagnosed in childhood, because it just was not available then, or not understood. So there are tons of us adults out there only now being diagnosed, who had never identified as autistic before, and certainly were never labeled as such. I think this issue will resolve itself naturally as this generation ages and more of the adults are diagnosed.

  4. I've been frustrated over the years as the mother of two autistic children, 11 and 16. I didn't know what Aspergers disorder or autism was until the late 90's when my daughter was born. No pediatricians or psychologists were able to identify that some of my kids challenges may be due to a spectrum disorder. And as they got older and were diagnosed, it was only due to my persistence in taking them for testing and new Drs frequently. They were diagnosed at 11 and 8. But that doesn't mean much when your teachers and even extended family members don't believe you have autism, or even really understand what that is.
    Ugh. Anyway, I wholeheartedly agree that autistic individuals need to keep working together on educating society about autism- it's a neurological difference, not a disease of any sort. Stop the mindset that autistics should strive to be some decided upon version of "normal". Strengths should be celebrated and respected, challenges should be worked on and understood, just like every human being.