With over a million U.S. children with autism approaching adulthood, Matthew Rozsa looks at impact of the coming wave.
There is talk of an impending “autism tsunami.
“More than 1.5 million people have the condition in the United States alone,” wrote Amir Khan of U. S. News & World Report on Monday. “But because the majority of these people are younger than 22, the country is on the verge of an ‘autism tsunami’ that could leave thousands without the support they need as they become adults, according to Autism Speaks, an autism advocacy organization.
While Khan and other autism advocates are correct in identifying medical and social service support as a critical need for autistic adults, it is also important for deeper cultural attitudes toward autism to undergo a significant adjustment. This isn’t the type of change that can be effected through legislation or alterations in bureaucratic protocol. Indeed, there are so many unique challenges posed to autistics by adult life that it’s difficult to even get a bead on the most important ones.
Believe me, I know this very well: As a high-functioning autistic in his late twenties who was first diagnosed as a teenager, I was a few years ahead of the wave in terms of receiving the necessary mental health care treatment and complementary social services but still spent much of that time struggling with profound insecurity and embarrassment as a result of my condition. Since I have discussed these personal ordeals in several previous articles (from a piece about my general childhood experiences and an article on dating to an op-ed on pop culture representations of autism and a broader exploration of the specific ways autistics struggle in social situations), I’m going to avoid delving too deeply into my autobiography here.
Strangely enough, I’m not even sure doing so is necessary; as I revised this piece, I kept noticing that much of the advice given here is universal in its application. Everyone would be better off if they lived in a world that incorporated these rules into its unspoken social code, regardless of whether they fall on the autism spectrum. It just so happens that the attitudes which would most immediately benefit people with AS are, more broadly, good approaches to adopt in general.
- Accept that there is so very little that we actually know for sure and so very much that we don’t.
In the very first article that I wrote about having autism, I had to account for the fact that the American Psychiatric Association had just voted to remove Asperger’s Syndrome as a separate medical classification and instead place it under the broader diagnostic umbrella known as “autism spectrum disorder.” For someone who had been using the term “Asperger’s Syndrome” for more than a decade, this change caused a pretty significant shift in how I viewed myself.
In retrospect, however, this was no more than a reflection on how little we truly understand about the human brain. This point was reinforced two years later, as I collaborated with Liskula Cohen on an article about Jenny McCarthy’s notorious campaign to link autism with vaccinations. While McCarthy’s argument is based on science that has been discredited, the fact that she feels the need to “explain” why her child is autistic at all deserves sympathy. Because I’m not a parent, I can’t comprehend how deeply most mothers care for the welfare of their children—and how terrifying it must be to find out that your son or daughter has received a medical diagnosis you don’t fully understand.
While this doesn’t justify McCarthy subsequently deciding to back a faulty scientific study, the error that she makes is a very common one: Because she couldn’t find definite and comforting answers from established medical authorities, she has tried to come up with her own. As our understanding of autism continues to evolve, it will become increasingly necessary to not only be open-minded to new information and ideas, but to accept that there is very little about the human brain which we know for certain. As more and more autistics enter adulthood, it is a guarantee that we will learn far more than we ever thought possible.
Socrates put it best: “The only true wisdom is in knowing that you know nothing at all.”
- There is a difference between something being “wrong” with another person and that individual simply being different.
A couple years ago, I discovered a comedy website called “Institute for the Study of the Neurologically Typical.” This is a reference to a common distinction drawn between people who are autistic and the rest of the world, with the latter being known as “neurotypicals.”
The website elaborated as follows:
Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.
Through the use of the satire, the creator of this website was making an astute observation—namely, that being autistic isn’t an illness or disability, but simply a different way of looking at the world. By inverting one’s perspective, it would be easy to imagine autistic people viewing neurotypicals as being the people who have something “wrong” with them, even though in truth both neurotypicals and autistics have a great deal they can learn from each other (more on that in Lesson #3).
Autism rights activist Jim Sinclair summed it up perfectly in his essay “Don’t Mourn For Us.”
Autism isn’t something a person has, or a ‘shell’ that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person—and if it were possible, the person you’d have left would not be the same person you started with.
This doesn’t mean that autistic people shouldn’t receive treatment to help become socially functional; to this day my autism has made it difficult for me to do things like learn how to drive a car (lots of nonverbal social cues there) or hold down jobs in menial labor (thankfully I have academia, writing, and politics to keep me busy and give me a place in this world). At the same time, it’s valuable to view them as outliers in a diverse world rather than people who are somehow sick. The term “neurodiversity” is very valuable here.
- Unless there is a compelling reason to do otherwise, always be open and direct about your thoughts, feelings, intentions, wants, and needs.
An autistic woman once emailed me (in response to an earlier article I’d written) by opening up about how painful it has been for her to communicate with other people. “In the process of improving my communication (which largely happened in high school/early college),” she wrote, “I became hyper-aware of what people thought of me and took it to heart in an attempt to improve.” She also discussed how little things like people not responding to her phone calls or emails would result in considerable self-doubt, with her feeling certain that she had done something wrong.
That last observation particularly resonated with me, as I’ve also had a hard time differentiating between people who don’t respond because they’re busy and those who do so as a way of expressing disinterest. One close female friend even recently told me, “I think you take my lack of response sometimes in the wrong way—which you shouldn’t.” She was absolutely right, of course, but because one of the defining characteristics of autism is difficulty understanding non-verbal social communication, we inevitably become hypersensitive to the possibility that we’re being rejected or receiving hostility in scenarios that may actually be innocuous.
The problem is that we’re not always wrong.
While it’s tempting to argue that this is because of how society mistreats autistics, I suspect the real reason is that neurotypicals so often express negative emotions through indirect means. Think about it: How often have you partially or completely “frozen out” romantic interests (real or potential), friends (again, real or potential), professional/school colleagues, and ordinary strangers instead of bluntly telling them what you think of them? How common is it for insults to be couched in passive-aggressive language, or even misleadingly characterized as helpful attempts to “just be honest” with the demeaned party? On a more benign level, how often do social interactions become hostile, tense, or awkward because of some “elephant in the room” that neither party is allowed to openly bring up? When autistic people like my far-flung correspondent or myself neurotically parse through our own word or fret over what others have said (or not said to us), it’s because we realize that there is a rulebook that neurotypicals know and we do not.
For autistics, the solution is clear: We need to give the benefit of the doubt to people who have shown themselves to be open and trustworthy and keep our guard up around everyone else. At the same time, it seems to me that the default assumption of autistics to be direct in all social communications—and thus lay everything out on the table—is far closer to healthy than the far-too-prevalent tendency among many neurotypicals to communicate through non-verbal, and thus inherently indirect, methods. While there are obviously situations where being indirect is necessary, there are far more when it simply causes confusion, discomfort, pain, and exploitation (usually by the more socially adept individual over the lesser one). As such, the default habit should be in favor of direct and open communication. Everyone should have a list of specific situations in which that rule is suspended, but when no items on that list apply, they should always practice candor.
Life would be so much clearer and happier for everyone if this was the pervasive social mentality. Of course, as I mentioned at the beginning, all of these lessons seem equally well-suited for neurotypicals and autistics. Perhaps the upcoming “autism tsunami,” instead of being an impending crisis, is actually a good thing. If nothing else, it will provide our culture with an outstanding opportunity to reevaluate many of its own premises.