Why My Friend Doesn't Have Autism: An Overview of the Hurdles of Getting Diagnosed With Autism
As you already know, this blog is meant to promote autistic perspectives through articles about the autistic experience. As such, we will occasionally reach out to other autistic people, asking them if they'd be interested in writing an article for us about something that resonates with them. For instance, not long ago, while this blog was in its early stages, I reached out to a friend of mine asking him if he'd be interested in writing an article about autistic representation in a favorite webcomic of his.
There was just one issue with it: my friend was not diagnosed with autism.
I was not aware of this until he pointed it out to me.
Now, this is not going to be an article on whether or not non-autistic people should be speaking on autistic topics. Note how I didn't say that my friend wasn't autistic, just that he was not diagnosed with autism. I was so certain that he had been diagnosed. He displayed several symptoms of it, from hyperfixating and infodumping to instances of social awkwardness. I even seemed to have a false memory of him saying that he had autism (though that may be a false memory in of itself. A false memory of having a false memory? Bah, I'm overthinking this). And in fact, as soon as I expressed my surprise that he wasn't considered to be on the spectrum, he began to question if he did have undiagnosed autism.
Which brings me to the crux of this article: how hard is it to get diagnosed with autism?
In order to understand this question, we must first revisit what we know about autism and how it's diagnosed. Across several websites and their pages on the statistics of autism (https://www.cdc.gov/ncbddd/aut..., https://www.nimh.nih.gov/healt..., https://www.autism-society.org..., to name a few), some of the most common statistics are that around 1 in every 54 children are diagnosed with autism, the rate of children diagnosed with autism has increased by 119% since the year 2000, and that more than 3.5 million Americans have been diagnosed with autism. Already we've run into a problem. All of the most common and basic resources about autism are centered around children. Even when the number of individuals in total with autism is given, when every other statistic is centered around children, it can be mistakenly assumed that the "individuals" in question are all under 18. In fact, the first estimate of the number of autistic adults in the United States was only just released in 2017, less than half a decade ago (https://www.cdc.gov/ncbddd/autism/features/adults-living-with-autism-spectrum-disorder.html). While an early diagnosis in childhood is key for someone with autism to get the support they need, this has lead to the unfortunate and untrue belief that if it wasn't recognized in a kid, there's no way that same adult can have it.
The diagnosis data isn't just skewed by age. Several of these statistic pages state that autism is four times as common in boys than in girls. Now, just think of the optics of that statement. "Four times as common in boys". This sort of statement is often written right next to the statement that autism occurs in all racial, ethnic, and socioeconomic groups. Of course, the ramifications of charting the prevalence of autism by race are clearly harmful. But then what makes gender any different? We know full and well that the color of one's skin and the money in one's bank account has no bearing on whether or not they may have autism, but their gender identity? Oh, sure, that changes everything. It's not that autism is more common in boys than in girls. It's that autism is more likely to be recognized in boys than in girls. This wording is crucial, as it paints a more accurate picture of how autism is diagnosed, albeit a more troublesome one. This unfortunately means that women who may be questioning if their habits line up with the symptoms of autism are more likely to be given the runaround by medical professionals.
And on that note, we move on to the hassles of the diagnosis process itself. While socioeconomic status has no effect on the presence of autism, it does factor into the decision of whether or not to be diagnosed. I probably don't need to tell you how ridiculous healthcare costs are in the United States, but an attempt at an autism diagnosis is not exempt from those costs, and I do mean "attempt". Speaking from personal experience, the testing process I went through as a kid being tested for autism took several weeks, and while I was formally diagnosed, it was not a guaranteed result. And while some may be eager to get a definitive answer to their suspicions, the stigma of an officially-recognized diagnosis may be too much for one to bear, and I don't just mean the social stigma. The sad truth is that citizens who are recognized as disabled are withheld several of the rights that are granted to neurotypical citizens. Fiscal independence. Body autonomy. Even marriage rights. All are severely limited for disabled citizens, and autistic citizens are considered disabled. Of course, these rights, or the lack thereof, vary from state to state. However, this makes the prospect of a diagnosis all the more confusing and intimidating. No one should have to agonize over whether or not to sacrifice their human rights for proper support of a disability they're not entirely sure they have.
With the failure to recognize adult and female autistic people, and the looming threat of government oppression, the recent phenomenon of self-diagnosis isn't nearly as surprising or as unreasonable as it's made out to be. There are several other things that may stand in the way of a potential autistic getting a diagnosis. Location of medical facilities, belief in medical science, religious upbringing, personal pride and fear of reputation, and many other factors that I don't have the time or space to go into right here. The rate of which people have been diagnosed with autism has steadily increased over the years. Some see this as a negative, as a sign that autism is an epidemic that is spreading across the country. I see this as a positive, as a sign that more people are comfortable and secure in getting diagnoses for themselves and their children. I can only hope that circumstances can be improved so that rate increases even further.
Perhaps, maybe one day, my friend will be autistic like me.
