Helena Mary Cole

I want to take this opportunity to encourage late-identified autistic adults to read books written by non-speaking autistic people. Non-speaking autistic people rarely go undiagnosed for long, at least in this part of the world. Something like that gets noticed. I’m talking to those of us who can speak and may have gone undiagnosed for decades: read what the non-speaking contingent of the autistic community has to say.

I’m saying this because I’ve noticed a lot of late-identified autistic adults will say things like, “I’m afraid if I start saying I’m autistic, I’ll be taking something away from people who need the label more.” We are such a conscientious, self-effacing sort of people that we are afraid of stepping on the toes of those with higher support needs. Some may think, “I’ve made it this far in life without knowing I’m autistic, so I must be okay compared to some. Maybe I shouldn’t bother getting diagnosed.”

Well, whether or not to get a formal diagnosis, if you’re an autistic adult, is entirely a personal decision that I will not attempt to make for anybody. But if the only reason why you’re reluctant to get diagnosed is the one I mentioned above… I don’t think it’s a good enough reason, especially if you want to pursue formal diagnosis and/or feel you might benefit from it. That’s my opinion.

The reason why I’m urging you read what non-speaking autistic people have to say is because I found it REALLY helped me see and understand that their condition is the same as mine, only varying in the amount of difficulty with communicating, auditory processing, emotional regulation, etc.

Of course, there are difficulties that my son Clark is facing that I never did. For example, while my teachers sometimes did doubt that I knew what was going on in class because I never said much and had trouble paying attention, they never doubted it for long because my written work showed that I understood quite well. Clark, on the other hand, physically cannot write because of his apraxia and poor fine motor skills. He even has difficulty with pointing, which means that asking a question and expecting him to be able to point to the right answer will not give you an accurate idea of how much he understands. This makes teachers and experts conclude that he doesn’t understand much, and is not smart enough for the regular school curriculum. Mr. Cole and I may have to fight very hard to make sure he’s even given the chance to get an education.

My getting an education was never in jeopardy for me. But having people think I’m not very bright? I know this experience very well. So well, in fact, that it always gets my back up when people treat me like I’m “slow” or “not smart.” Clark is not able to speak in almost every situation; I am unable to speak in some situations. I never had a teacher doubt my intelligence, but not everybody gets a peek at my written work. When you’re the girl who never opens her mouth in social situations, people will often conclude that you must not have very much going on upstairs. For reasons I don’t understand, and attribute mostly to ignorance, people think that if I’m not saying anything, I must not have anything to say. And if I don’t have anything to say about something that most people have something to say about, then maybe I just don’t understand what’s being talked about. Maybe I’m not very smart, they surmise.

When I do speak, I speak quietly, which people understand to mean I don’t really know what I’m talking about or else have no confidence in what I’m saying. My suggestion and ideas, if I do manage to get them out, are nobody’s rallying point. Always the tone of shock and surprise when my ideas turn out to be correct, sound and viable! Oh, it’s a life-long pet peeve.

Also, I’ve had people treat me like a blank slate of sorts, and project their own ideas about what I must be like onto me. They don’t know what to make of me so they fill in the blanks as they see fit. And then there’s a shock and surprise when it turns out that I’m not who they thought I was, when I have my own thoughts and opinions that differ from theirs.

The point is, while I don’t know what it’s like to come up against a completely solid brick wall when it comes to being able to communicate, or what it’s like to have my future in jeopardy because of people assuming I’m not intelligent enough for school, I certainly know what it’s like to be thought of as unintelligent. As far as I know, I’ve never been mistaken for a mentally challenged person – only below average, I’m sure. But I do know what it feels like when people are shocked to find out that I’m smart. And I, in turn, was surprised to find out how much I have in common with non-speaking autistic folks.

I also know very well what it’s like to feel trapped inside. Again, it’s a question of degree, compared to what non-speaking autistics experience. While Clark cannot “get out” by any of the conventional means of expressing himself, I do have options, but my options are still limited and not the means people expect me to be able to use. For some reason, I noticed this first in high school. I felt like I was an interesting person, with lots of interesting passions, and many, many things to say, but that no one outside my family knew that. I was able to go home at the end of the school day and make up for the fact that I’d barely talked all day by keeping up a long and steady monologue to my parents. Apart from them, no one really had any idea of what I was like because I could not engage in social conversation like most people could, especially in groups. Groups, the social bane of autistic people the world over!

But I do know that feeling like I’m going to explode because I am so bottled up inside with no way of getting out. Clark experiences that with much greater intensity. One non-speaking autistic person wrote something like, “When I was a kid, I couldn’t talk, so I destroyed books.” I couldn’t help half-smiling, half-groaning when I read that because Clark also destroys books, and it sure seems like the more he likes the book, the worse condition he leaves it in. It’s a great irony of my life that I’m such a neat freak about keeping my books in good shape and I have a son who rips them apart with his teeth. Thankfully, board books are his favourite for destroying, so my own books are relatively safe. And it’s also a good thing I had a summer job repairing textbooks at my high school three summers in a row. It’s not rocket science, repairing a book – it’s a joke when I talk about having been “a professional book repair person.” But we keep a lot of duct tape and clear packing tape on hand for that purpose.

I didn’t consciously vent my frustration at not being able to talk socially, although it’s a safe guess to say that’s why I spent (and continue to spend) so much time writing.

To get back to the point, I came away from reading (for example) Ido in Autismland by Ido Kedar with a confirmed understanding that autism is the correct name for the way in which I experience life. There can be very little doubt when I found myself relating so strongly to what Ido was saying as a non-speaking autistic person. I’ve only highlighted two of the major relatable experiences here.

It’s funny how Ido, in his book, argues that Asperger’s syndrome (the old name for lower support needs autism) is “something different” from what he has. I’ve been meaning to write him a letter and say, “Your book has actually convinced me of the opposite.” Well, I guess I can see how Clark might have a lot of trouble believing I’m in the same boat he’s in. That’s worth thinking about. The diagnosis he has that doesn’t apply to me is “apraxia” not “autism.” If my Aspie Quiz results carry any weight, there’s a good chance I have “dyspraxia,” the much milder cousin of “apraxia,” but that’s a story for another time.

But I really wanted to say, if you’re late-identified autistic and you’re worried about “taking something away” from people who “need the diagnosis more,” please don’t. Don’t worry about that, I mean. Do some autistic people have higher support needs? Yes. That doesn’t mean you’re not autistic. That doesn’t mean you don’t have any support needs at all. You may be used to downplaying your needs – I certainly am in the habit of doing that – but if there’s a chance getting a diagnosis could improve your quality of life, don’t imagine you’re taking anything away from anyone in pursing one.

Personally, I think the more autistic people in the world who know they’re autistic, the better. We might get farther faster with building an autism-accommodating society if we can impress them with sheer numbers. You never know.

I guess that’s it for today.