A parent of a former student called me to check in. He’s had a hard time since he left. I agreed to talk to the psychologist about our experiences with him.
I can’t reveal too much (as usual!) about the details, but suffice it to say, if I believed in functional labels (high-functioning/low-functioning), I would say, absolutely, that he was a “high-functioning” Autistic (for new people to the site, I DO NOT BELIEVE in these labels, but I will say he is very skilled at masking; the labels I only mention to serve a point as to how people who others believe are “high functioning” can be overlooked even though there is no such thing as “high functioning”). He’s been skilled at masking his Autism since he was in a tiny school until this year, and as the demands of moving into the tween years get harder, he’s struggling in and out of school. He’s one of those problematic types who is both academically gifted and Disabled, which the public schools have historically had a heck of a time with.
The psychologist was not impressed with my observations. I suspect she will discount them, not recognizing what it looks like to be an Autistic who does not have “Educational Autism” (fancy language in schools for “too good at school to get help”). Without a corresponding academic struggle, he will not be diagnosed and they will continue to wonder what’s “wrong” with him.
But I know him. I knew him last year, and I also knew that his mom wanted him to stay with us this year since she knew he was finally, finally making progress both academically and socially. He struggled at school for years not because he didn’t know all the things but because he lacked the executive function to turn materials in, or the impulse control to do what he was told.
He made so much progress he was three years ahead on standardized tests by the time I was done with him…in less than a year.
And yes, we were actually able to measure him on standardized tests; I’d reduced the stress enough that he was taking them seriously and able to focus on them.
Lest you think I’m bragging about being a miracle worker, let’s be perfectly clear: I didn’t DO anything…but I let him be himself and reduced his stress levels. I removed the meaningless hoops of homework for the sake of homework and requiring my kids to sit in a desk, not move, and not talk. And I listened to him, and argued and debated with him.
I treated him like a human being.
That is really all I did. I treated him like a human whose perspective was valuable to me, because it was. Too often, we teachers treat children like some other species. That doesn’t work well for Autistics who don’t understand register (changing how you speak to meet the age/place in society of the hearer) which is why we often try to talk to our teachers since they don’t oversimplify language. But then, the teachers want us to talk to the other kids who aren’t quite able to communicate with us since they’re too well-versed in “kid speak.”
We grow up, and eventually it all works out. More or less. If we can survive whatever trauma occurs in the meantime.
Anyway, Mom said, in a parent meeting, that I was the best teacher he had ever had. She defended me against people who wanted me gone because I didn’t do things the “right” way. She re-registered him for this year.
But in the summer, this boy struggled to leave the house. The psychologists said he needed more kids, that that would fix it all.
So, very reluctantly, and with much tears from her AND from the boy, she pulled him from our school.
And now, he’s still struggling.
My Autistic voice is again silenced in the face of the psychologists who “know better.”
But I know him. I know he’s like me.
But I do not have the power in this society to shout over the people who decide these things.
I have to watch and wait.
I hope he can find me when he realizes he’s like me so that I can teach him the ways of our people and that he’s not only fine, he’s better than fine.
No matter what the psychologists say.
It’s not that he has to stay in my school; I’m not territorial that way. But my heart hurts when I can’t talk to a child officially about being Autistic until he gets the stamp of approval from the same people who insisted on pulling him out of the school because “he needed more kids” (that is SO not a thing; no one “needs more people” especially if you have found people with shared interests in your current school).
Misdiagnosed and Miserable: The Effects of Not Being Diagnosed
My husband spent time in-patient for depression and anxiety when he was a teen. He was constantly being medicated for various things. Today, he is still on mood-stabilizers (by choice; it gives him a little more patience), but his depression and anxiety “disappeared” when he realized he was Autistic.
Sure, he’s still depressed and anxious a lot. We all are. Both of these ride with Autism and some of us remain on medication to help with these things.
But when you realize the reason you have these things is because the world is wrong, not you, it becomes more manageable.
And when you realize you have the power to make your home and, if you’re lucky, your work and/or school experience Autism-friendly, things do get better.
But first, we have to know who we are.
And that we’re not wrong for needing whatever it is we do need to make our lives more Autism-friendly. Fewer people, less noise, reduced distractions, whatever.
As long as the medical community can declare us Autistic or not (or worse, the school community can declare us “not Autistic enough” because we’re not impacted enough with our grades), this will be forever a barrier to our healing through self-awareness.
And we will continue to struggle. My husband has PTSD, which is not an uncommon thing for Autistics to get diagnosed with even if they have had an otherwise peaceful life. The prevailing theory is being continually forced to “mask” our Autism and not being able to be “socially acceptable” and not knowing why we are simply incapable of fitting in can cause our daily experiences to be like being in a constant warzone. The PTSD is why, we think, he needs the mood stabilizers.
So, it’s not the Autism that causes him to need extra medical help to get by. It’s the lack of knowing that he was Autistic during his formative years.
Let that sink in: not knowing he was Autistic caused him to feel like he was in a war zone every day of his life. He now has a lifelong struggle not because of his Autism, but because he didn’t know that he was Autistic and therefore no one was able to meet his needs.
This is why I implore you, if you are a parent to think very seriously about Autism from the perspective of actual Autistics.
Parents, if you suspect your child is Autistic, I pray you find a teacher, social worker, or other human services type person who is Autistic and aware he or she is Autistic to help you understand what you’re looking at. Even if your child can’t get “services,” we might be able to help by just talking to you and your child about what it is to be Autistic. By knowing who we are and our culture and helping your child learn to listen to himself and his needs, we can help.
Re-learning Who You Are and What You Need
I have heard that we have, in our bodies, the ability to know when we are full by just eating until our brains know we are full.
Over time, if we ignore that signal, we will lose the ability to have our bodies tell us when to stop eating.
I think that we Autistics who have had to mask for most, if not all, of our lives, struggle with knowing what it is we need because we shut down that little voice that told us we needed something.
We multi-task because we think we’re good at it, not realizing that it causes us a whole lot more trouble than we realize. We put up with crowds because we are told going to a live performance is objectively better than seeing it on video.
But unlike the little voice that tells us when we’re full (at least, I assume…I haven’t gotten my little “you’re full” voice back even though I’ve tried), we can get better at figuring out what we need and then asking for it.
My husband and I went to a comedian we love about a month ago.
We LOVE him.
We went to see him a few years ago, shortly after my husband knew he was Autistic, but I didn’t yet know.
We loved it…or so we told ourselves.
This time, because we listened to ourselves, we realized that, while it was way neat to see this comedian in person and yes, we did love that aspect and it WAS a lovely theatre (etc.). WE HATED THE PEOPLE SO MUCH.
It was not, we decided, objectively better than watching him on television. In fact, it was much worse. It cost more in terms of finances and stress. So much more.
We will not be doing that again.
We learned, and we grew.
Knowing yourself is essential to beginning to heal and grow and to help you to recognize the little voices in your body that tell you what is or is not good for you even though the world might tell you these things are “fine” or “great” when they are not, in fact, fine or great for you.
You know what helped us to learn more about those voices? Listening to other Autistics, especially the great online Twitter and blogging communities. We are good at asking questions such as, “Do any of you not see any images in your heads at all?” and finding out that you are not alone. Then, we crowdsource ideas such as how to deal with a mess (Cynthia Kim’s advice to break it into smaller chunks has helped me loads!). As we did that, we got better at brainstorming our own solutions to our own issues and to recognizing troubles we were having that we might not have recognized as being problematic.
We got “better” not because we got healed of our Autism, but because we started listening to our bodies again and were getting healed of the damage done to us by allistic society.
This is why it is much more important to listen to Autistics.
Don’t let the medical community serve as your gatekeeper, and don’t let people scare you away from listening to the lived experiences of actual Autistics.