Wednesday, April 3, 2019

I am 21 years old, and live in East Tennessee.

My biggest accomplishment so far is surviving, if we’re being completely honest.

I wish neurotypicals understood that we’re not burdens and we’re not “empty shells” of the people we could be. We just need extra supports, love, and understanding.

Also: please stop killing us. Filicide and violence against autistic people is a huge issue in our community, and it breaks my heart. I’m working on starting a project to bring awareness to this issue - especially after my youngest brother died last September (he was 7). I still don’t know what happened, but the way I hear people talk about their children being burdens and taking them for granted infuriates me. Please please please love your children. Don’t hurt them.

I can say 100% that ABA was not one of the beneficial services. However, speech, occupational, physical, and mental health counseling from a young age made a huge difference for me personally. Instead of trying to mold me and “hide” the autism, the professionals helped me learn that accepting myself is necessary for a better quality of life - and that there are tools and resources out there that can make my life just as fulfilling as anyone else’s.

Having academic accommodations, understanding support systems, and friends/loved ones who help me with “basic” things has also been very important. I’m still waiting to get an aide at home through Home and Community Based Services, which I’m really looking forward to. I’m not technically supposed to live alone, but I have a support system of people who check on me and help me as much as they can. I’ve been *very* lucky in that regard.

I want those who are autistic to know that: It’s okay to be autistic. I know the world is a hard, confusing, and scary place - but you are full of worth and value, and no one can take that away from you. No matter how much support you might need, you are valid and loved in this community. It’s okay to need help, and it’s okay to be different. You’re not alone!

My autistic quirks that got me noticed to diagnosed: Oh, there were several! For example, *very* repetitive and restrictive interests, sensory issues (my meltdowns were mistaken as panic attacks or “emotional outbursts” for a while), difficulty with social skills, not quite grasping basic executive functioning skills no matter how many times someone showed me/made me do it, horrible organization skills, and flapping/toe walking (which didn’t really get noticed until I got older; I think they thought it was normal kid behavior until I turned into a teenager). I didn’t get officially diagnosed until I was 19, but I found out later that a lot of the teachers, professionals, and adults in my life already had assumed I was autistic. They just didn’t really say anything about it.

Honestly, getting the diagnosis was such a relief - but it also had a lot of other emotions tied to it. I was ecstatic to finally have an explanation for my “weirdness,” especially since it seriously impacts my ability to live independently. It made me feel less broken. At the same time, I was a little bitter by the fact that both of my little brothers were diagnosed first - and I had been passed over because “girls can’t have autism; Autism Speaks never shows any girls, and you’re just weird.” I was also kinda sad because our society is really negative towards autistic people. There have been cases of diagnosed autistic people who get their children taken away solely because of being on the spectrum, people who are denied entry at borders due to their disability, and the obvious stigma that seems to surround being autistic. Before I got diagnosed and was the sister of two autistic brothers, people took my opinions much more seriously.

After I got diagnosed and disclosed being on the spectrum, people dismissed me because of it. Still, I’m really glad I got the diagnosis because it opened up a lot of services that I desperately need.

Today: I’m quite pleased about my diagnosis, honestly. After I got diagnosed, I started going to support groups and made friends. This eventually led to advocacy work- as I ended up briefly running events at the local autism community center when it was open, started up a Neurodiversity Club at my college, have spoken at conferences, and currently run a website where I compile resources for autistic people and their families.

Not having a diagnosis definitely made things more difficult, for sure. I could’ve been given more supports and specific help for being autistic - but instead, I felt passed over and as if my needs were not met. And yet, I’m one of the lucky ones who managed to get a diagnosis. There’s so many systemic barriers, and I was somewhat lucky in that regard.


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