I went through most my teaching career without talking about my Asperger Syndrome. I imagined every negative outcome; people questioning my ability to teach, children in my class wondering what was ‘wrong’ with me, parents asking the headteacher why they’d knowingly hire a teacher with a disorder, and so on.
But the reaction I perhaps feared most was belittlement.
You see, it takes a great deal of courage to open up about issues that reside in your head. Whether it’s your neurology, mental health issues, or anything else that can’t be seen except on doctors’ notes. And if there’s one thing worse than the fear of being shot down for opening up, it’s that once in a while someone actually shoots.
When I told Autistic Not Weird’s Facebook community that I was writing this article, a lot of people became interested. [All links in this article open in new tabs, by the way.] The ANW community is made up of autistic people, parents/relatives of autistic people, teachers/doctors/other professionals, and people with no links to autism but want to learn. So it’s quite encouraging that such a diverse community is uniformly concerned about this, and not just those who are autistic themselves.
I can only imagine the amount of good I could have done for autism awareness/acceptance if I’d felt able to talk about my autism in mainstream classrooms. Instead, I only opened up when I worked in special education, in classes where almost every student was autistic. They would get it, even if nobody else would.
But, now that I’m a public speaker on autism issues, a published author and a writer by trade thanks to my Patreon supporters, I’m no longer a shy guy who’s afraid to mention autism for fear of other people’s reactions. So this article’s written for those who are afraid to speak for themselves, and it concentrates on the hurtful line of argument “but you’re not REALLY autistic, are you?”
Wait, people actually say this? Who, and why?
Yep, I’m afraid so. Because I can talk about my autism, there are people who think I’m less ‘qualified’ to do so. Obviously this presents an enormous problem for autism awareness, and is extremely damaging for autism acceptance.
It’s quite clear who these people are talking about when they say “REALLY autistic”. They’re referring to those with extreme visible needs and those who will need lifelong care, like many I’ve known professionally. (And those who, usually unbeknown to them, I know and love in my personal life too.)
As the other infamous phrase goes, I “don’t look autistic”. (I wrote an immensely sarcastic retort to that line of argument too, funnily enough.) When autistic people like myself are seen not just talking, but sitting rather than rocking and making eye contact even though we’re not supposed to, those with severe learning difficulties are immediately referenced in order to make our claims less believable.
I do wonder how these individuals feel about being used to belittle the needs of others. I doubt they’d be on board with it. Then again, their opinions are usually valued even less than mine.
Below is a quick list of those I’ve known to make these remarks, and their typical motives:
Well-meaning family/friends: This is usually a form of consolation; a badly-phrased but well-intentioned sentence of support. And for those who aren’t (yet) well-versed in autism understanding, it’s easy to inadvertently say something that’s not as helpful as they intended. (For anyone wondering what to say and not say to your autistic loved ones, I’ve written another article about that here.)
Vague acquaintances (and not-so-well-meaning family/friends):
Whereas some people might intend “you’re not really autistic” in a sympathetic manner, others use it to be contentious. In these cases, the line can be translated to one or more of the following:
- “You don’t match enough of the stereotypes for me to take you seriously.”
- “I don’t see your struggles, therefore they probably don’t exist.”
- “You’re just calling yourself autistic for attention.” [And definitely not because a psychiatric professional literally diagnosed you with it];
- “I’d rather not have to make an effort to respect your needs.”
There’s a common experience among parents of autistic children: that once your child is diagnosed, you learn who your real friends are. Those unwilling to accommodate your child’s needs will quickly find a way out of your life. And it’s similar for autistic adults too: a diagnosis can often be an effective tool for working out who truly has your best interests at heart.
Some parents/relatives of severely disabled children: You’d think that autistic people and parents of autistic children would get on, right? After all, there’s a nice amount of common ground and priceless opportunities to learn from each other’s perspectives. But in far too many places on the internet (and offline too), there is a deep divide. In my opinion this ‘us and them’ attitude is both counterproductive and utterly pointless, and we should just stop arguing amongst ourselves because it’s just embarrassing to watch. But among the myriad of horrible words each side throws around, there are some parents who try telling us our experience of autism is less ‘valid’ because we can literally speak for ourselves.
I try not to respond harshly to parents of severely disabled autistic people, since their comments often come from personal hurt- and often, as mentioned above, from being let down by a lot of people even within their own family. And in my experience, dialogue is a better response than yelling.
With that said, none of the above makes belittling my own difficulties any less hurtful to me.
Very few autistic people, ever. Generally speaking, we know how much it hurts to have your very real (but invisible) needs belittled. We tend not to do it to each other.
So with the above in mind, here’s my counter-argument.
Why my autism matters
There seems to be a common misconception that ‘high-functioning’ autism is the Holy Grail of neurodiversity. As if it’s “autism without the difficulties”. As if we were “born with a disorder but got away with it.”
This leads to people telling us that we shouldn’t talk about autism as if we’re “truly” affected by it, like those who are nonverbal or intellectually disabled. (Those are two different things, by the way.)
I’m not going to enter any ‘autism contests’. I’ve known and worked with enough visibly disabled autistic people to not compare my challenges to theirs, or theirs to mine.
What I am going to do is reveal how non-linear the autism spectrum is.
During my first year in special education, I worked with two different groups of autistic teenagers. One group were surprisingly similar to me in terms of their personalities, except with mild-to-moderate academic learning difficulties. (Some, to be frank, didn’t have ‘natural’ learning difficulties at all: they were just bullied out of mainstream education.) The other group had severe learning difficulties, were all nonverbal and needed intimate care.
It was a job that gave me a wide breadth of experience: helping 16-year-olds with their GCSE mathematics one day, and toileting/changing profoundly disabled teenagers the next. And among the many things I learned was this lesson:
Being ‘mildly autistic’ does not mean you’re mildly affected by your autism.
Some autistic people are affected by their difficulties more than others, that’s for sure. The misconception is that academic or speech difficulties are the sole indicator of who finds autism challenging (or, even worse, which autistic people have the ‘right’ to feel challenged by it).
In both my personal and professional experience, I’ve found no direct correlation between lack of learning difficulties and lack of woe for the autistic person. Allow me to explain.
One student I worked with closely was a 12-year-old boy with very severe learning difficulties, who needed adult support with literally every part of his life. I was acutely aware of his severe and lifelong needs whenever I worked with him, whether I was changing his soiled pads, getting pushed around by him in the corridors, comforting him in his anxieties, or riding in the back of an ambulance with him.
And all the while, I felt conflicted. As much as I worried about his future prospects, it was difficult to feel sorry for someone who was just so unbelievably happy.
Didn’t see that coming? I’m serious, this lad was a trooper. Even in the face of anxiety, severe epilepsy and the struggles that come with severe learning difficulties, he was the happiest young person I’d ever known. At the age where most young people grow a sense of boredom or apathy towards their childhood interests, he was the only 12-year-old I knew who had retained the wisdom to know that this world and everything in it is awesome. Honestly, I kind of admired him.
Meanwhile, on other days I’d work in the mild-to-moderate classes, and have in-depth conversations with students who only had their needs recognised by the grown-ups after they’d attempted suicide at least once.
Yeah. It’s like that at my end.
Of course, there were also children with severe learning difficulties who found their whole lives to be challenging or frightening. There were also academically capable students with fairly high self-esteem. My point isn’t that one group has it better or worse than others (like I said, there’s no point in autism contests). My point is that autism-related challenges are more complex than people think.
In fact, feel free to take a look at this article: Why ‘High Functioning’ Autism is so Challenging, by Lisa Jo Rudy. It’s a very, very accurate piece.
It’s quite inconvenient that all my issues are so subtle. When I tell people I’m autistic, all they can see is a regular guy with no visible deficiencies except an unusually big nose. What they don’t see is:
- My social anxiety;
- The difficulties of predicting the ‘rules’ in any given social situation, whilst intensely fearing the consequences of getting it wrong;
- My inability to pass job interviews like I’m expected to, because the process is designed with the non-autistic majority in mind;
- Being blamed for my failures by people who think I’m not ‘supposed’ to struggle;
- The crippling intensity of feeling too much empathy for those I love (we do feel empathy, by the way, and the sooner that misconception dies the better off we’ll be);
- Being a bully magnet at school;
- My adulthood years of feeling like a trespasser in everyone else’s world.
(This does not include the struggles that other individuals like me experience, such as extreme sensory issues, chronic sleep disorders, struggles to adapt to change, comorbid conditions such as OCD and ADHD, and far more complex mental health issues than mine.)
Imagine, if you will, living with the above challenges and summoning up the courage to talk about them. The other person then judges your exterior and claims you can’t REALLY have problems.
This is basically why this article exists.
The sad truth is, just because you can talk doesn’t mean others listen to you. The world has many people who disregard autism-related insights from people like me, whilst claiming to support those with severe communication difficulties. (The irony being that if such people later became able to express themselves fluently, the same ‘supporters’ would then dismiss their opinions just as readily as mine.)
Why public perception matters
More than once, I’ve had autistic people tell me they wish they were “more visibly autistic”. Because, after decades of learning how to imitate the non-autistic majority, their needs are so subtle (in front of other people, at least) that they’ve either been disregarded or disbelieved. They tell me that if their autism had been more blatant, their difficulties may have been noticed instead of their strengths but at least they’d have been noticed at all.
It’s difficult to argue against that, to be completely honest. And it’s quite telling that, even though visibly disabled people are defined so deeply by their weaknesses that their strengths are usually ignored (or assumed not to exist), there are ‘high-functioning’ autistic people who would willingly adopt that kind of lifestyle because of how others have treated them.
It’s kind of how I tried to change my personality at secondary school to appease those who were bullying me, except in a much more profound way.
Also, we don’t need the general public to try driving a wedge between visibly autistic people and the invisibly autistic. The autism community is divided enough, as I described earlier. And while we make ourselves busy trying to address that unnecessary divide, we should also be helping the rest of the world to understand that there are more than two manifestations of autism. Right now the world knows the Sheldon Cooper stereotype and the Rain Man stereotype. (Leaving aside the fact that one of those is humorously familiar but not to be taken seriously, and the other should be seen as a piece of 1980s autism history rather than anything that bears relevance to today’s understanding.)
But there are those in the middle who are neither savants nor intellectually impaired. Neither supremely intelligent nor lifelong disabled. People in some kind of middle ground whose brains just think differently, whose additional needs have been pushed behind their smiling faces by decades of social training and a desperation to meet the expectations of others.
I have to admit- there have been times when I’ve been made to feel guilty for ‘not being autistic enough’. (Not truly feeling guilty, but being made to feel guilty.) I mean, how dare I talk about the difficulties of being autistic, with my fantastic ability to act in public as if my difficulties don’t exist?
But I’ve come to realise two important things: firstly, that I shouldn’t wish extra difficulties on myself in order to justify my autism to people who are clearly committed to misunderstanding me.
And secondly, I’ve spent enough of my life being discouraged from expressing myself. Those years are over now, and I’ve earned the right to be listened to.
I am really autistic, whether people like it or not. Whether it’s convenient to them or not, and whether I meet their expectations or not.
More to the point, I’m really autistic whether I like it or not. Whether it’s convenient to me or not, and whether I meet my own hopes and dreams or not.
And although it may not be obvious from this article, I’ve grown to like being autistic. The difficulties may suck, but once you get past other people trying to define who you are (and who you aren’t), once you stop forcing yourself to be ‘normal’, and once you start defining yourself by your strengths rather than by your weaknesses, being yourself is pretty great.
So that’s it from me: on the topics of defining yourself by your strengths and being free from normality, feel free to take a look at my 3-Minute Autism Advice series written for autistic people young and old, and here’s another link to Autistic Not Weird’s Facebook community too. Finally, writing for ANW has become my job now thanks to my Patreon supporters, so if you’d like to support my work in exchange for some lovely rewards, here’s the link.
Chris Bonnello / Captain Quirk
Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
Copyright © Chris Bonnello 2015-2018