I was nervous about getting my autism spectrum disorder (ASD) diagnosis. What if I didn’t have an ASD at all? what then? But what if I do? Maybe I don’t want that. Maybe I just want to be normal, or at least to believe it. Is it really worth it? What will change in my life after I know?
It was a lot of money for a two-day long analysis. Is two days enough to really evaluate me? It was a LOT of money to spend on a half-assed diagnosis. But my psychologist had good reviews. She specializes in autism, including adults with autism. The latter is a difficult qualification to find. She must know a thing or two.
It would be a few years between first contacting the psychologist and actually going in for an evaluation. I was initially a 2 hour drive away and stressed at the prospect of all that driving plus a long time spent in the office. I finally made the appointment when I lived a little closer, but it was still nearly an hour drive and into the heart of downtown Denver. City driving gives me more anxiety than long distance driving.
But I had to know. I was tired of my assumed ASD being used against me by friends and family when convenient and brushed aside when not. If anyone was going to use it as a weapon, it better at least be a valid one. And then, maybe, I’d feel more confident defending myself because I knew what exactly I was defending.
I found it difficult to behave naturally during the evaluation. I was worried about any of my natural traits coming across as forced or deliberate, even though they weren’t. I didn’t want her to think I was trying one way or another. As a result, I was hyper aware of every little thing I did. By the second day I was worried that I tried so hard to not come across as autistic, that the results would be skewed the other way. But oh well. I trusted that she could see through all that. By the end, I had the impression she wasn’t going to diagnose me with an ASD. We spent so much time discussing traits I had that didn’t quite line up, more so than time spent discussing the ones that did. And yet, her final assessment was, yes, I am definitely on the spectrum. I have what would have been labeled Aspergers before it was lumped into the larger ASD diagnosis.
I felt relieved when it was over. I had the words on paper to serve as evidence of my feat. I was so proud of myself, I did it. I survived the city, and the unfamiliar environment. And I survived it twice! I am not good with multiple big events happening too close in proximity. I need a lot of down time between activities outside the home that aren’t part of my usual routine. But I was a real trooper this time.
After the novelty wore off, life went back to normal. Only, now when my ASD is used against me, I can’t reply with “you don’t know that.” But, hey, on the bright side (I thought), when people give me grief about not fitting in with standard social customs, my excuses won’t be taken so personally. Maybe this will improve my relationships, maybe now I can start making real friends. I can say I don’t feel up to going out for multiple invites in a row and it won’t be perceived as rude. Now I can decline hugs without hurting people’s feelings. Now I can say something makes me uncomfortable and people will take me seriously. Unfortunately, none of this is the case. Others only acknowledge my ASD when they can use it as an insult. Otherwise, it is the same invisible disability it was before my diagnosis.
—Please, don’t make that sound —Oh, OK sorry
—Don’t touch me there. —Ok
—this aesthetic makes me uncomfortable —*shrug*
Some time later:
—I said I don’t like that, please, don’t —OK
and later again:
—Why wont you listen!! Stop, please! —woah! Chill out! Jeez. Wait, you were being serious?? I didn’t know it was such a big deal…
Yes, it’s a big deal. These aren’t petty complaints or preferences. I get surges of adrenaline when I see or feel certain things. To make matters worse, I have mirror-touch synesthesia. I’m really not messing around when I say something bothers me. It really IS a big deal. Why won’t anyone take me seriously?
And yet, I know why. I don’t look like anything is wrong with me. I’m not physically handicapped, I don’t have the physical traits that show themselves in conjunction with other mental disorders, I don’t act particularly unusual in most settings. People expect that I can control my mind the way they expect people with depression to do the same. —Just get over it! Mind over matter…
I wish I could. Sometimes I can manage better than others. My spiritual practices have been helping immensely. Especially meditation and breathing techniques. I haven’t had a serious meltdown in several years. I have a pretty good idea of what I can handle and what I cannot, so I plan my days accordingly. But I don’t always have control over my surroundings. And I can’t just get over it.
My friends try to understand. But I don’t think they really do. I still hurt feelings. I know they are human and that theoretical understanding of my situation doesn’t change how my actions affect them. I wish it didn’t have to be like this. All I can do is spread awareness. Perhaps if enough of us share our experiences, the rest of the world will believe that they are indeed real.