If you search my name and the word “ableist” online, you will find a very angry blog post from 5 years ago about what a terrible person I am for picking on autistic people. Back in 2013, I saw a segment of some show or another about awesome autism is. During this segment, whoever was in charge thought it would be nice to showcase the amazingness of high functioning savants and let them sing the praises of autism. I was livid and went off on the insulting tone-deafness of the whole thing and stated that autism sucks. This prompted a high functioning autie to take offense and write the blog post about me.
It’s been half a decade since then. I’m older, wiser, and you know what? Autism still sucks. Fuck autism.
If you’re not familiar with the phrases “high functioning” or “savants,” in the context of autism, they’re almost exactly what you’re thinking. It’s called “Autism Spectrum Disorder” for a very specific reason: Autistic people fall along a very broad range of behaviors, intelligence, and how severely they’re impacted. High functioning autistic people are the ones that can live on their own or with minimal assistance. Low functioning is what we saw in “Rain Man;” people unable to take care of themselves in any meaningful way.
For example, one of the men highlighted in the segment from 2013 could hold a regular conversation and was a musical prodigy but had to wear a diaper. This was not a physical issue but rather a result of his autism. He was a high functioning savant that nevertheless was unable to learn how to toilet.
What offended me so much about holding him up as a shining example of how wonderful autism can be is that it does a tremendous disservice to the overwhelming majority of autistic people. I’ve been told by a few people over the years that they love their autism because it makes them who they are. My response has been invariably the same: “That’s because you’re high functioning. How much would you love it if you weren’t?” The same goes for the musical savant. Sure, it’s great to be able to be one of the top piano players in the world. A lot of people might trade being incontinent for that ability. But would you embrace your diaper and autism without the ability to play? Of course you wouldn’t. No one would.
Savantism is only found in 10% of autistic people. And not all of them are high functioning. What good is the ability to memorize every baseball statistic for the last 100 years if you can never communicate with anyone? Being able to draw the Manhattan skyline with machinelike precision is great but if the tradeoff is the sensation of your skin feeling like it’s on fire or the world sounding like it’s coming through a bullhorn right into your ears, it’s not really a fair deal.
What happens when you’re not a savant or even high functioning? How awesome is autism then? Hint: It’s not. It sucks.
I’ve watched my son Jordan struggle for the last 8 years since he was diagnosed with autism. He struggles with school work. He struggles with social skills. He wasn’t fully potty trained until he was almost 8. He still has trouble speaking. Expressive language is difficult for him. He doesn’t play with other children unless prompted to do so. It’s not that he doesn’t like other kids, it’s that he doesn’t understand why he should want to play with them. He’s in the fifth grade but is reading on roughly a second to third-grade level. And that’s on a good day.
Fortunately, Jordan is only moderately impacted and does not have any serious behavioral issues. I’ve seen other children who can’t stop biting themselves until they bleed. I’ve watched others that can’t speak at all and literally stare into the distance and drool. Then there are the ones with serious emotional problems and the others that don’t progress beyond a childlike mentality. We worry that Jordan may be one of these last, an adult with the mind of a child, but there’s no way to know until he gets older. Still, we know that even though he’s not high functioning, it could have been far, far worse. For those others, autism sucks in every way imaginable.
I know I’m going to be bombarded with claims that autism gives those “blessed” with it a unique way to see the world they wouldn’t have otherwise. No offense, but how the fuck would they know? What’s their frame of reference? Have they spent time being neurotypical to compare it with? This is like when people without kids claim to be happier and more fulfilled than their friends with children. They literally have no basis for comparison. Until you have a child of your own and have raised it, you cannot possibly understand.
Aha! You might say the same about my claims about autism sucking. You might have a point except for the fact that, again, if you don’t have the luck of being high functioning, what benefits does autism bestow? A lifetime of confusion? An inability to communicate? Requiring constant supervision? Abuse at the hands of the police because they can’t be bothered to learn about autism? Yeah, that sure does sound worth it for everyone not lucky enough to be a high functioning autie that can live independently. And even “high-functioning” isn’t necessarily enough to be a functional, independent adult.
I get it, though. I really do. For the mildly impacted, saying autism sucks can feel like a personal attack. But it’s not any more than my saying dyslexia sucks is an attack on dyslexics. Just because some have learned to overcome a handicap doesn’t mean the handicap is suddenly a gift. Yes, it may (emphasis on “may”) have made them a stronger person, but not everyone is going to persevere and in the end, it’s still a handicap. And while those who persevere have something to be proud of, they shouldn’t let that pride make them forget all the others who weren’t so lucky.
Jordan may progress to the point where he can be independent. It’s hard to see that from here but we haven’t given up hope. But no matter what the future holds, Jordan is not the child he was supposed to be. He will not grow up to be the man he was supposed to be. I love my son. He is a happy, easygoing kid and, thank dog, he is very affectionate with us (not the most common trait among those with autism). I’ve met a lot of parents who aren’t nearly as lucky. But no matter how much I love him, I can never forget that his future was taken from him by autism.
1 in 59 children are diagnosed with autism and it was not like that 20 years ago. And, no, a better understanding of what autism is does not account for the increase. There are simply more cases. A lot more. There is something new in what we eat or drink or breathe causing it and I promise you, some corporate suit somewhere knows what it is. The oil companies knew their product was causing global warming decades ago and buried it. The tobacco industry knew their product was killing people decades ago and buried it. Right now, this very second, an industry knows their product is causing children to be born autistic and they’re burying it. It’s just a matter of time until we find out.
So, yes, I will continue to say “Autism sucks” because it does. The fact that it now impacts millions of adults of even more millions of children doesn’t make it “good” or “a blessing.” Autism is a neurological disorder and while a few are lucky enough to hit the jackpot of being high-functioning with a savant skill they feel is worth the disadvantages, most aren’t.
I will continue to fight for Jordan in school and I will continue to be an advocate for autism in public. Being autistic does not mean our children should be shunned and cut out of society. But I’m also not going to sugar-coat what is essentially a growing plague on humanity. Autism sucks and I could care less whose feelings that hurts.
I’m a stay at home dad, father to a special needs son and a special daughter, a donor baby daddy, a militantly pragmatic liberal, the president of the PTA, a hardcore geek and nerd and I’m going to change the world. Or at least my corner of it.