My Autism Diagnosis Journey

It’s been a crazy couple weeks for me. After a year of being self-diagnosed, and 29 years of knowing I was different but not knowing why, I finally decided to get a formal autism diagnostic evaluation. And oh boy, was it a doozy!

I guess I should explain why I did this, since there is no real “cure” for autism. It’s partially so I can get disability accommodations at work or with government assistance. But mostly, it’s about peace of mind. I wanted to know that I wasn’t just crazy. I wanted to feel more comfortable the way I am, and I felt like getting an official piece of paper was the best way to do that.

But getting an evaluation with an autism specialist is not easy, and certainly not cheap! Most specialists don’t take health insurance, and ask for $500+ up front. (Yay, America!). I had to make so many phone calls before I found someone who I could actually afford. And that was just the first step.

I finally found a specialist named Sarah, who worked with me to pay for my treatment in installments. She seemed knowledgeable and friendly enough, but I was still nervous as hell. I did my research online and heard so many horror stories of people getting dismissed for the most superficial of reasons. But I tried to go in with an open mind, and reminded myself that I was lucky to find a specialist who was both female and an LGBTQ+ ally.

The first meeting was a “getting to know you” session, where Sarah asked me a lot of deep, dark questions about my childhood, mental illness, and my struggles with trauma. I’ve been to so many different therapists that I was used to this by now, but it was still a draining 2-hour session. At the end, she sent me a couple questionnaires to fill out, the main one being the Autism Quotient (AQ).

Each test was a series of 40-60 personality statements, and I had to circle whether I agreed or disagreed with each one. Some of the questions were easy, but a lot of them were so confusing that I felt like throwing my hands up and doing the anime girl “EHHH?!” sound. For example:

“I prefer practical jokes to verbal humor.” – What kind of humor are they talking about specifically? I hate sarcasm or put-down humor, but I laugh way too hard at corny dad jokes. So I guess my answer to this one is, “it depends…?”

“I enjoy social occasions” and “I enjoy social chit-chat” – These questions are redundant and vague. I don’t like crowded places, but I love hanging out with my neurodiverse friends. I never feel like I have to “fit in” or act a certain way to be accepted. Maybe the problem isn’t that I don’t like social occasions, but that I don’t like being forced to socially interact with neurotypicals all day?

“I am fascinated by numbers” – A lot of neurotypicals think every autistic person is a math whiz. Thing is, I hate math! I’ve always been more of a creative person. So now I have to tell the truth and risk being rejected because of stereotypical views, or lie to fit into that same stereotype. I ended up circling “Slightly Disagree”.

The next three sessions were all going over my answers. A test can only say so much about you, so it’s good to have someone to listen to my story before they make a diagnosis. Yet I still struggled with this part, because so many of the questions were personal. A lot of them related to my childhood, and I couldn’t help remembering how difficult things had been for me growing up. I was bullied a lot in school for being different, and my father was abusive at home. Talking about those traumatic memories is emotionally draining for me, so getting through those sessions was probably the hardest part of the whole thing. Luckily, my therapist was patient and understanding enough to let me vent my frustrations with the process.

After 4 weekly sessions, I finally got my results and almost 10 pages worth of explanation. I was officially diagnosed with Autism Spectrum Disorder, as I hit basically every category they check for. I wasn’t surprised by the results, but I was surprised by how I reacted to it. I thought it would be a life changing revelation, but instead, I just felt a slight sense of relief. I still have the same problems that I did before, but now I know a little bit better how to deal with them and to not beat myself up for things that aren’t my fault.

The biggest questions I had now were: “Why did no one tell me about this sooner?” and “Where do I go from here?” I didn’t grow up knowing I was autistic, and I thought if someone had told me sooner that certain parts of my life wouldn’t have been as challenging. But the sad reality is a lot of autistic kids fall through the cracks. I was a fairly bright and well-behaved kid, and quiet enough so that no one noticed how much I was struggling. And there just wasn’t a lot of general knowledge on autism when I was growing up in the 90’s. The only thing most people had to go on was Dustin Hoffman’s character in Rain Man, and the inaccuracies of that particular film would take a whole blog post of its own.

As for what the next steps are, well, there’s actually not a lot I can do now. I can’t take any pills to “cure” my autism, nor would I want to. The main thing it would help with would be getting accommodations at work. For example, I have been able to work from home because the office I was working at uses flourescent lights that give me severe migraines. It can also help if I need to apply for disability, although it’s no guarantee that I would still get approved (disability services in the U.S. are notoriously slow and tend to reject pretty much everyone the first time they apply). And there are some organizations that help autistic people with life things like finding a job or housing. That’s pretty much it.

So I guess it’s a bit of a mixed blessing, but it’s mostly the validation that matters for me. I think it helps to know that I’m not just a defective person for not being able to handle large crowds or flourescent lighting. It just means my brain is different from most people’s, and that’s not necessarily a bad thing. The autistic neurology also has a lot of benefits, like being creative, thinking more critically, and not being as easily swayed by trends or authority figures. It’s not an easy life to live, but it is a meaningful one, and really, that’s the most important thing.

4 thoughts on “My Autism Diagnosis Journey

Add yours

  1. Welcome to the club!

    I’m usually fairly closed about who I let know about my autism. Much more limited than say being a nudie. Never been is a situation where I’d gain the slightest benefit from it. I’d have to be much farther down the spectrum to be able to claim it as a disability. OTOH most people’s ideas of autism are either Rain Man or Sheldon Cooper or the kid in the special needs class who bangs his head against the wall. None of these images are accurate nor would they would make my life any easier.

    But the blog-o-sphere seems pretty accepting of all my eccentricities, Asperger’s included. God looked upon the suffering of autistic people and gave us anime to assuage our pain. We’re in a pretty safe and tolerant corner of the internet. That’s a blessing for people who don’t want to deal with abuse for being their own unique selves.

    Liked by 1 person

    1. Thanks 😊

      I haven’t came out to that many people yet. I’m still a bit nervous, because when I came out as trans five years ago I lost a lot of friends and family members over it. I figure that anyone who accepts me because I’m trans wouldn’t have a problem accepting my autism, but you never know…

      I’d like to educate people on this stuff though, because as you said most people’s ideas of autism are woefully misinformed. At the very least it might make people aware of how difficult things are for people like us.

      Liked by 3 people

  2. I feel the same way you do 🤗 I have always been considered weird or awkward growing up and always overthinking. So many of the criteria meet. I came to the resolve to get officially diagnosed yesterday… Just to know. All my social skills I had to learn from extensive research. Thank you for sharing

    Liked by 1 person

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