Tuesday, March 15, 2016

Help 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.

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.

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 sensory friendly movies and theater showings to specialized vacation spots, 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.

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. Recent studies show up to two-thirds of autistic young adults aren't working nor have any work experience. And if they disclose their diagnosis in their resumes, they're unlikely to get any follow-up, which which is equally the case for most disabled adults in America, despite 1990's Americans with Disabilities Act. Autistic adults suddenly confront a world that isn't prepared for them at best, and can feel downright hostile to them at worst.

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. There's a number of colleges that offer support for autistic students (although they don't run cheap). And last year's World Autism Awareness day made employment for autistic people its top priority, to which Microsoft launched an initiative to hire people on the autism spectrum. 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.

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 still 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.

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 neurodiversity - 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. (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.) No one benefits from being left out of society - everyone wins with acceptance and inclusion of those who are "different".

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?

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