What does it mean to be autistic? In theory, one would presume the people most qualified to answer that question are those who are autistic.
In practice, however, those who are on the spectrum — like this author — often find that our neurodivergent traits are questioned by strangers.
"I get frequent complaints about my autistic traits and pretty much all of them tend to follow a certain false logic," explains Max Perlin, a 16-year-old high school sophomore in Maryland whose mother Kimberly is a mental health therapist. Perlin told Salon in writing that people will tell him that he must not be really autistic if he does not fit their narrow view of how autism is "supposed" to look.
Perlin's experience is familiar to me. Growing up autistic, I was often told that if I simply explained my disabilities to people, they would understand and treat me as an equal. Since in part the autistic condition involves differences in how people communicate with each other, the end result of being autistic is often embarrassment and rejection for the autistic individual.
Like most autistic people, I have on countless occasions attempted to directly and clearly communicate the struggles of being autistic to neurotypicals — that is, people who are neither autistic nor otherwise neurologically atypical.
"There is this general feeling that we can't possibly understand what we actually experience because we don't have theory of mind... It's also a way of not allowing us to advocate for ourselves."
The good news is that, in my experience, many neurotypicals are sympathetic and accepting. Yet what about the countless occasions when an autistic person explains their autism to a neurotypical and the neurotypical takes it upon themselves to disagree? What if an autistic person tries to encourage understanding by dispassionately stating facts, and a neurotypical with tremendous certainty spews a series of incorrect takes — with perhaps a soupçon of condescension?
Unfortunately, this is not a subject on which I need to speculate, because it happens all the time. Indeed, many autistic people with whom I spoke attested to this common experience, of being invalidated by neurotypicals who believe that they have the right to tell autistic people whether or not they are actually autistic.
"Basically if you aren't a stereotypical autistic person you cannot use it as an explanation for your behaviors," Perlin told Salon. "Some examples of this logic in specific responses I've gotten are 'Well you're not that on the spectrum' 'You're only a little autistic,' etc. All these are followed by them dismissing my explanation."
Perlin concluded, "I've tried to surround myself with people more aware of the nuance of autism but there will always be ignorant people I have to interact with."
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Generation Z is not alone in experiencing ignorance toward autism. Stephanie Hastings, who was diagnosed later in life than Perlin, identifies as a member of Generation X's "gifted and talented kids," to use Hastings' own words. Today Hastings works in digital and social marketing/outreach "thanks to my understanding of patterns and the science of studying humans." Yet even her career successes have not spared Hastings from doses of neurotypical ignorance. Because she is described as "verbally capable," Hastings finds that others are prone to telling her that her autism can't be that bad, may not be real, or perhaps "could be cured with some fitness magic nonsense they heard on talk radio."
"Or they have someone in their family who is also neurodivergent but maybe they're non-verbal so it's a small box we must fit in for any consideration or grace," Hastings pointed out. She added that, because she is a woman, Hastings faces an additional layer of ignorance.
"As a female autist, I get a lot of misunderstanding stemming from the expectation that women in society are supposed to be more fawnish or 'sweet,' but that only sabotaged my nature and required masking (which we know is exhausting)."
"As a female autist, I get a lot of misunderstanding stemming from the expectation that women in society are supposed to be more fawnish or 'sweet,' but that only sabotaged my nature and required masking (which we know is exhausting)," Hastings told Salon.
Like Hastings, Danielle Lynn Fountain is a successful professional — in her case, she is a neurodivergent staffer at Google and author of the book "Ending Checkbox Diversity: Rewriting the Story of Performative Allyship in Corporate America." Yet despite her impressive achievements, she still has to fight autism stereotypes.
"When I first 'came out' as autistic, sharing my diagnosis with family and friends, a common response was 'you're not autistic, you're just lazy sometimes,' attributing my masking/executive functioning burnout to a laziness 'common amongst millennials,'" Fountain wrote to Salon. "Along the same vein, when I disclose my neurodivergence, a common response is that if I only paid a little more attention, used a planner or to-do list, or invoked other tools of productivity, the 'symptoms' I claim are part of my neurodivergence would actually disappear."
As one example, Fountain cited this email from close family members sent in response to a recent health update.
"We read your note with great surprise," the note read. "We are so worried that people are putting thoughts in your mind. You are a wonderful person. Can tackle any problems head on. Then get them sorted before others have made the first phone call. There are many people we are sure would like to see you fail. But please don't go looking for problems that we don't believe are there."
It is tempting to say that this trend of neurotypicals "ablesplaining" to autistic people comes from a place of good intentions, but sometimes I wonder. In my career as a writer, I think of how the term "autist" is often used as an insult (I've been singled out by trolls as an "autist"), especially by people who disagree with the ideas in my articles. Conversely, some trolls will pick apart the exact nature of my own individual autism as they perceive it, often while discussing their own neurodivergency experiences. These seemingly disparate acts — one that uses autism as an insult, the other invalidating or minimizing others' autistic experiences — are both manifestations of a culture that habitually marginalizes people based on their neurological status, and yet through that process acknowledges how a degree of social power can be reclaimed by openly embracing one's own neurodivergency.
Could these dynamics drive neurotypicals when they doubt an autistic person's autism? A brief foray into psychological theory may help illuminate. Some autism advocates argue that instead of defining autism as a disability, experts should instead refer to a "double empathy problem." This theory holds that, instead of autism being the "wrong" way to communicate, neurotypicals and neurodivergents (that is, all kinds of non-neurotypical people) simply have different ways of interacting. By extension, this means that neurotypical people as well as autistic people have a responsibility to be accommodating to how others process reality and communicate differently. Misunderstandings and hostility are inevitable unless good faith efforts to communicate are made by all parties — not just neurodivergent people like me, whom society takes for granted should learn how to mask, but also the neurotypicals who benefit from that same status quo.
If the double empathy theory is accurate, then there are many neurotypicals who are miserably failing to rise to the occasion. Perhaps that is why we still live in a world where the neurotypical approach to communication is deemed "correct," and neurodivergent approaches are quite simply "wrong." It is also why I've often suspected that sometimes, when an unqualified third party challenges an autistic person's diagnosis, they do so to make sure neurodivergent behaviors remain stigmatized and neurotypical behaviors remain privileged. By doing this, would it not allow them to claim that they aren't really discriminating since they are rendering the reality of their target's differences into something "debatable"?
When speaking with my friend Morénike Giwa-Onaiwu, an author and autism advocate, I shared my own hypothesis about neurotypical tendencies to reject autism when it is explained to them. Is it possible that this is done deliberately (whether consciously or subconsciously) to blame the autistic person for their own autistic traits and thereby justify excluding and mistreating them? After all, other groups with privilege engage in gatekeeping behaviors because on some level they realize that they accrue social benefits when marginalized groups stay marginalized. Could the same thing be happening when neurotypicals insist that autistic behaviors not be rendered "acceptable" by acknowledging that they are due to autism — an act that, out of necessity, would erode the privileges that come when only neurotypical behavior is widely accepted?
Giwa-Onaiwu was inclined to agree, and she has had many examples of situations where people denied her understanding. She has been accused of trying to physically strike a neurotypical person "because of the way I was flapping my hands," was accused of using her sensory sensitivity as an excuse to "get out of class," and was told that she was "overreacting" while she was in tears because of a flight complication.
"I am pretty certain that in some instances it's partly — heck, I'd even say largely — gatekeeping (whether deliberate or subconscious)."
"Although I think both the former (double empathy) and the latter apply, I am pretty certain that in some instances it's partly — heck, I'd even say largely — gatekeeping (whether deliberate or subconscious)," Giwa-Onaiwu told Salon.
Autistic political journalist Eric Garcia, who wrote the book "We're Not Broken: Changing the Autism Conversation," offered a complementary take on how gatekeeping occurs. During our brief conversation, we discussed how even people who dismiss or minimize autistic experiences frequently do so because they already are biased against the target for their autism. For many neurotypicals if someone says they are autistic, that means they are not credible in the first place, even when discussing their own condition.
"I think that there is this general mistrust of autistic people when they try to explain their own experiences," Garcia told Salon. "There is this general feeling that we can't possibly understand what we actually experience because we don't have theory of mind. We don't understand what is actually happening to us. As a result, it's also a way of not allowing us to advocate for ourselves."
Perhaps the underlying issue is that, among neurotypicals, there is a distinct pattern of either not understanding — and, when given the chance, of not wanting to understand — how autism-related traits affect the way we communicate. There is an unyielding, hostile and at times aggressive belief among many neurotypicals that they have a right to decide what is and is not related to autism: the autistic person's diagnosis be damned. The neurotypical person will insist that their way of interpreting the autistic individual's behavior — an interpretation that is invariably negative, often attributes the behavior to bad motives or character flaws, and can frequently be infantilizing and patronizing — must be correct.
If the issue was merely one of ignorance, then a clear and reasonable explanation would be enough to change things. When that does not work, it is reasonable to suspect that the rejection is born from more than mere pride. The most obvious response to it is for autistic people like myself to tell neurotypicals (and, for that matter, unsympathetic neurodivergents who for whatever reason throw their lot in with reactionaries) this: Their opinions about our bodies don't count. Unless a third party is professionally qualified and personally familiar with the specific autistic person in question, they possess neither the authority nor the right to disagree with the stated realities of that autistic person's abilities and disabilities.
And our experience mirrors something that happens to others with all kinds of conditions physical and mental. One might notice clear analogies to mansplaining or the general experience of having any invisible disability questioned.
In the meantime, autistic people will have to find a way to put up with neurotypical bad behavior.
"It sucks to have to endure these moments but, also remember, if they're not going to listen to you as you as the one living the life — then they're choosing to stay in their limited thinking," Hastings wrote to Salon.
"Is it frustrating? Absolutely."