Okay, there’s been a hot button topic within the Autism community that I have yet to discuss but lately has gotten pretty heated on some forums so I feel I need to offer some of my insight on the issue. Within the community there seems to be a stigma around “self diagnosis” which is exactly what it implies, it’s someone diagnosing themselves as being on the spectrum without any medical proof or evaluation from a psychologist. Now you may remember back in the fall of last year when Jerry Seinfeld stated in an interview that he may be Autistic. Within moments of that interview there was a shitstorm of backlash from parents of children on the spectrum who saw this as simply a publicity stunt. To them it was nothing more than a celebrity attempting to capitalize on a struggle that affects many families. Their worse fear was that their struggle would be overshadowed by a celebrity who doesn’t look like they should ever be the face of Autism. Now while I feel for the families with children on the spectrum and those on the spectrum who feel that people are hopping on the bandwagon because they think it’s cool or hip, there’s something you need to understand about the world’s perception of Autism.
Autism isn’t viewed by the world as this cool hip movement to be a part of. Like any disability Autism carries a ton of stigma, so much so that a child getting an ASD diagnosis is the equivalent of a death sentence. At that point you might as well just go at their hopes of a prodigy child and empty an entire revolver clip in to their dream bubbles. The media and the cries of parents who are fed up with their Autistic children portray Autism as that unbearable struggle that yields no benefit what so ever. Autism has been portrayed as being synonymous with heartache, broken dreams, broken families, and financial ruin. Let’s be real, the last thing a parent wants their child to be is Autistic. The last thing anyone wants to be is Autistic. Sure, cancer sucks too but if caught early at least there’s a good chance of eliminating it but you can’t cure Autism. Now with this being said just ask yourself this, who in the right mind would want to jump on our bandwagon for shits and giggles? Why would someone as famous as Jerry Seinfeld want to be the face of a disability that according to our perceptions strains families physically, emotionally, and financially? Someone of his stature wouldn’t dare come out with that unless he was actually serious.
To drive home how bad the backlash can be I shall present you a story from my own personal experiences. One night I was at one of my monthly gaming industry meetups. I was chatting with a girl who was talking to me about her Autistic brother and a ton of the struggles that her family has to endure in the process of caring for him. Now being on the spectrum and having cared for people on the spectrum I knew exactly where she was coming from from both perspectives. In this moment I thought it would have been a great time to empathize with her and potentially offer her valuable advice. Needless to say that effort blew up in my face like a faulty grenade. Her response was “you know, I hate when people self diagnose themselves as having Autism without realizing how much of a struggle it is for people who have to deal with it”. She then went on an even longer tirade of the struggles with her brother and the conversation pretty much ended there. On one hand I do understand why she got so upset, her brother and people as severe as him are the only thing she’s ever known of the disorder. Essentially her brother is the face of Autism and also the way of their life. Her family and many others have dealt with their severely autistic child for so long that they’ve never known people on the spectrum who with the right supports grew to be successful and most importantly, independent. The same goes for the parents of children on the spectrum with severe behavioral issues. They’ve never known people on the spectrum who are successful, only their child who just destroyed another $5000 TV or won’t let his or her parents have an adequate sex life because they refuse to go the fuck to sleep which is why it’s understandable when they see someone as successful and witty as Jerry Seinfeld say that he might be Autistic. To the parents who only know their child,the last thing Autism is synonymous with is success and celebrity status.
At the same time this ideology does hurt quite a bit. For someone to accuse me of giving myself a label simply because I think it’s cool or socially beneficial is further from the truth than a report on deflated footballs written by Ted Wells and lets be real, that report is pretty fucking far from the truth, even a Casey Anthony not guilty plea is closer to the truth than that report or the ideology listed above. I’ll be honest, some days I wish I wasn’t Autistic, some days I wish I didn’t have that awkward stim where I twitch my eyes, I wish I was good enough at small talk that I could flirt with the gorgeous looking woman I saw at the gym the other day, some days I wish I could talk normally and not with my gross garbled up voice that makes me sound like someone broke the pitch switch on a tape recorder and it’s been stuck on low for 22 years with no plans of ever getting back to the midpoint. Some days I wish my mind didn’t operate as if Danica Patrick was behind the wheel and could slow down just for a bit, some days I wish I was better at processing my thoughts so that I could speak as well as I wrote, I’d be pretty dope at picking up women and job interviews if that were the case. The point is I didn’t ask for this shit, it’s a gift and a curse that were both handed to me at the same damn time, only difference being that when I opened my package I had to dig through used needles instead of cereal just to get the toy. Now given my invisible struggles, what benefit to I have to gain from telling people that I’m Autistic. When I tell you I’m Autistic it’s for you, not me. I do it because I need to prove to people that it isn’t a death sentence and that every person whether you’re on the spectrum or not is capable of being the best possible version of themselves. The goal is to eliminate the stigma which is exactly what Jerry Seinfeld had hoped to do but it unfortunately met with vicious backlash.
My opinion on self diagnosing, I have absolutely no problem with it. Given what I listed above, no one wants to be Autistic, no one thinks it’s cool or hip or sexy. If someone were to go up to me and tell me they might be Autistic I will give them the benefit of the doubt because given the stigma it takes a lot of courage to say that. Even if they don’t seem like they’re Autistic on the surface I’ll still give them the benefit of the doubt because you don’t know what they struggle with behind closed doors. Being a high functioning Autistic attempting to bend in to a society is a balancing act tougher than walking a tight rope with two atom bombs hanging at the end of your baton. The same goes for Jerry Seinfeld, you don’t know what that man deals with when he’s not on a camera and I have met people on the spectrum who are just as clever and witty and I’m open to that possibility because I understand Autism as a spectrum with people of varying degrees. My only grip with him saying he might be Autistic is that someone of his stature has the money to go to a skilled psychologist and get an official diagnosis. There are unfortunately many that don’t have the funds or insurance that will cover that or the therapies that follow an official diagnosis and at the end of the day, all they have is their self diagnosis. I think self diagnosis is an important first step. Being able to express your social and sensory difficulties makes it easier for a psychologist to zero in on a diagnosis and allows them to know what to watch for during testing. If you have the money or the insurance to get testing done then by all means go for it but if not then no worries. Sure you’ll deal with the emotionally trainwrecked parents who will always think you’re full of shit and the elitist Autistics who think you don’t belong but somewhere out there is a community of people that will welcome you with open arms. It’s been real people, stay classy…..