When Your Teen isn’t “Autistic Enough”

We have a 15 year old child named VIktor. When they were 13, we realized, with the help of a therapist, that their sensitivities, behavioral traits and other quirks were actually signs of autism. Suddenly, all of the pieces fell into place, and as we learn more about what being autistic means, we’ve been able to shift our world just a little to help them live in it more comfortably. Life for them isn’t sunshine and rainbows all the time, but every month since getting their diagnosis has gotten a bit better as we all learn to navigate their brain. To be honest, the most frustrating part of Viktor being autistic is… other people.

It wasn’t hard to miss the fact that they are autistic because they don’t show many of the classic “signs” that I had learned to associate with the disorder. As horrible as it is to say now, I thought that there were two kinds of autistic people: the type who don’t speak and spend their days rocking back and forth, and Rainman. Of course, the more I learn, the more I realize how narrow my understanding was, and I know that I’m not the only one. Now, part of my job as a mother of an autistic person is to spread the news far and wide: Autism can look like Anybody.

Viktor holds a moth in their hand
What does an autistic person look like?

Sometimes I do wish that their disability was as “obvious” as other disabilities. If someone is blind, deaf, or uses a wheelchair, people generally understand immediately what accommodations they are going to need in order to successfully survive and thrive in the human world. We know that they will need braille, a sign language interpreter, or ramps to do what abled people are easily able to do. (Whether or not these things are actually made available is a whole different story for another day.)

I think that this is because we can all cover our eyes (or plug our ears) and experience, at least for a few minutes, some of the obstacles that blind and deaf people encounter everyday. We can, in theory, borrow a wheelchair and try to navigate the world in it, and figure out how to make that world easier for people who use wheelchairs. (That being said, we’ll never truly understand the depth of issues that a disabled person experiences unless we also have that disability… and there is still terrible, rampant, ubiquitous ableism).

But autism isn’t as easily “experienced” as these other disabilities. There is no switch that neurotypical folks can flip on to understand what it’s like to have a brain that is constantly in overdrive. Empathy for them is nearly impossible, because we simply can’t imagine what it’s like to be in their head and body. It gets doubly difficult when the autistic person can’t express exactly what it is that is impeding their efforts; all we can do is a whole lot of trial and error until we find the magical combination of light, sound, environment, temperature, support people, time of day, etc etc etc.

Then we have Viktor, who is generally very good at expressing what needs changing in order for them to be more comfortable and productive… but this often backfires. Because they have a great vocabulary, can more or less get around on their own, are very smart, and are talented in several different areas, people who don’t know them don’t understand that they are Actually Disabled. Viktor often gets so completely overwhelmed by their senses, thoughts, and emotions that they literally can’t function the way that they are being asked to, but someone who doesn’t know that about them only sees a person who is being “overly sensitive, obstinate, anxious, stubborn, and defiant.”

Viktor has a white bunny on their shoulder
If only they could take a support bunny everywhere they went…

Would you hand a blind student a book and then get mad when they can’t read it? Would you expect a person who uses a wheelchair to participate in all of the PE activities? How about calling a deaf person lazy because they aren’t taking notes during a verbal class lecture? No… you would allow accommodations so that these students would be able to stay and thrive in the same learning environment. And you wouldn’t make them feel ashamed about it. At least I hope that you wouldn’t.

We are so thankful that Viktor is able to express themself so well. They aren’t having one meltdown after another. They can help us to understand what kind of extra help they need in order to navigate life. They are usually able to ask for this help when they need it (well, they’re getting better at that with practice). But we occassionally still have to fight against some teachers and other authority figures who don’t see Viktor as a person who actually needs these extra accommodations, and it’s frustrating and disheartening, to say the least. (Side note – this year is the best we’ve ever have as far as school is concerned!) I suspect that, if Viktor were “more obviously” autistic (like non-speaking, for example), people would have an easier time believing that they need extra help.

I worry about what it’s going to be like when they are an adult and they have to tell other people – bosses, landlords, partners, professors, doctors, etc – what it is they need in that moment to function, and why. The best that we can do is support them as much as possible now, and teach them how to self-advocate. But it feels like an uphill battle, and I’m not sure how to climb it sometimes.

Viktor is holding a basket of chatrelle mushrooms and smiling
They will happily gift you hand-harvested mushrooms in exchange for your assistance.

If you are in the company of an autistic person, and they ask you to help them change something about the environment, or adjust your behavior, or any number of things that can help them to function better, please do your best to understand. It’s not your job to question their needs or judge their abilities – it’s your job to be a decent human being and meet them halfway.

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