My name is Adria. I am a young adult with autism, cerebral palsy, and a learning disability. I’ve developed a career of disability advocacy through working with the Indiana Institute on Disability and Community at Indiana University Bloomington. I share my story of living with multiple disabilities through my blog, “Adria’s Notebook,” which promotes independent living and community involvement in teens and young adults with developmental disabilities. I also give lectures on autism and learning disability and on how they affect children, teens, and young adults.
I was asked to write an article for this month’s newsletter about a topic that I thought important or beneficial. One of the areas I know many teens and young adults with autism and developmental disabilities can struggle with is becoming comfortable with disclosure and acceptance of their diagnosis.
First off, let me say that the struggle is real. I know, because I went through it. In my teens and into my early 20s, I found myself wrestling with my diagnoses and resisting self-acceptance, so badly wishing for things to change. Eventually though, in my mid-20s with consistent support from child and adolescent mental health services, I began to see that my life may look a bit different than that of my friends, but in the end it’s really okay.
The interesting thing about disability is, no matter what your diagnosis, disability will follow you throughout life: to a university lecture hall, out to dinner with friends, or studying at Starbucks. I knew if I wanted to live an active and fulfilled life, I would need to become comfortable with talking to different groups of people about how my diagnosis affects me in various settings. Over my young adult years, I have learned a lot about life with a disability. Disclosure and acceptance have actually become easier the more I have done it. I have sort of a pre-planned discussion that I have with peers where I talk about what life has involved for me, how my diagnoses affect me, and how this might play a role in our relationship.
I remember the first time I told a peer I had a diagnosis of autism. She was someone I’d known for a little while, by the way. I don’t just jump into a disclosure conversation; I carefully consider the person first. I went to lunch with her over the weekend and we sat and talked about life, classes, school, and family. Then, awhile later, I said, “Look, I actually wanted to talk about something. I have autism. It’s not that I don’t like you or anything, I do. It’s just that part of autism for me is difficulty with physical touch, so if I try to get away from you if you hug me, it’s not your fault.” Hugging was pretty common among some of the young women I knew. I wanted to let her know that, though hugging wasn’t my thing, she shouldn’t misinterpret that to mean I didn’t want to be her friend.
She was very understanding and actually, after that, we spent a significant portion of our lunch just talking about my life with autism and autism in general. It was really great. She actually ended up being one of my first and closest friends after college.
I think a lot of young people with disabilities fear that disclosing a diagnosis may come with judgement or rejection or that it may mean doing things differently or asking for help. I will be honest; it can take a while to get comfortable doing it. Sometimes, I still have periods where I really find it hard to let people into my world, not in relation to college—I’ve finished with that—but in relation to young adult life and independent living. Sometimes, I want so much for support staff just to stand in the corner until their shift is over and then quietly shut the door behind them. However, I know that to really live the life I want, the best thing to do is to slowly let them into my world instead of shutting them out.
All in all, I have found that people are generally very kind, compassionate, and empathetic. In fact, I have found that being able to talk about my diagnosis is something most people, including young adults my age actually find very interesting and positive. After disclosure, I find that most people don’t actually shy away. Our relationship actually starts to grow, because I no longer have anything to hide. They see my disability and the way it plays a role in my life, but they also see the other parts of me, like my love of The Beatles, dogs, and useless knowledge. They become comfortable with my disability because they know it’s just part of my life. Actually, some of them even grow more comfortable in letting others see their own imperfections and also more self-confident in being able to care for another person.
It is when I have let my peers see me in the good moments but also the messy and difficult moments that I see how awesome humanity really is, and yes, life really is okay.
Adria Nassim is a columnist and blogger working with the Center on Community Living and Careers at Indiana Institute on Disability and Community. See more of her work and life adventures at Adria’s Notebook.