I turned the piece of glazed ceramic around in my hands a few times, noting the mosaic of colors of the DIY adornment and its distinctive tennis-shoe-print texture. The roughly four centimeter diameter circular piece of painted hardened clay was attached to the end of a piece of string which had been threaded through a half dozen or so multi-colored plastic beads and then tied at the ends into a necklace.
What I was holding in my hand was a 1st grade art project, created well-over ten years ago. Our class had rolled clay into a ball and then stepped on it to flatten it. We poked a whole near the top of the clay disk and then painted and glazed it before the art teacher fired them in a kiln. A little bit of thread and decorative beads and voila, we had made necklaces. While I had made one at the time and I even still know where it is at home, the necklace and clay adornment I was holding was not made by me, but rather a friend who was in my first grade class. I was over visiting and noticed this particular elementary school art project hanging near his desk, which had brought a flood of memories of the time back into my head.
I turned to my friend and asked if he remembered making these in art class in 1st grade. He replied that he did not, and had very few memories from elementary school. This is reasonable, after all a lot of people have trouble recalling their childhoods. But what continues to haunt me to this day is the reasoning he gave next for why he thinks he can’t remember much of it: trauma.
My friend had experienced so much trauma, so much pain, and so many bad memories that his brain had pushed them so far out of his consciousness that he couldn’t recall them. Though honestly, I’m unfortunately not surprised. This friend is autistic as well, and I know first hand the sort of trauma that autistic students go through at school because I lived it too. In fact, I don’t think I’ve ever met an autistic person who went to in-person school and doesn’t have some sort of lingering trauma from the experience.
The fact is that our schools are failing their autistic students. Though some places are better than others, this isn’t a problem that’s restricted to just one country or region. It’s occurring the world over, and the worst part is that it almost seems like society is just sort of OK with this. Autistic students are being traumatized by their experience at school, and facing a higher rate of both dropping out and, even worse, suicide as a result. If this were occurring within the general population of students it would be called a crisis and immediate action would be taken, and yet with autistic students it’s almost looked at as if it’s just the expected norm, or at least there aren’t enough people saying or doing anything about it to suggest otherwise.
I was almost a victim of the school system, but I managed to escape thanks to the efforts of a small private high school. Unfortunately, many people are not as lucky and privileged as I was in this regard. But having gone through a lot of school trauma myself, in addition to the insights I’ve gained speaking with other autistic students, I think that there are many factors that are causing the trauma that autistic students are facing. However, if there is one thing that needs to change, one factor that I think is having the greatest negative impact on autistic students is rampant behaviorism.
The biggest blunder that educational systems across the world have made in regards to their autistic students is to treat autism as if it were a behavioral disorder. “Behavior” is one of the big autism buzz words in education; you’ll hear people talk about “managing behavior” and “challenging behaviors.” Autism is often times summed up as just a list of “behaviors.” Teachers post in forums about stopping this or that “behavior” from an autistic student. Autistic students are described as being “noncompliant,” and when an autistic student is having trouble with an activity they are sometimes said to be “refusing” to do X or Y or Z. When I was in elementary and middle school every autistic student had a “behavior plan,” and IEP plans for autistic students generally focus on extinguishing certain “behaviors,” with this being framed as providing “support” for the student in question. Some people consider the highest success an autistic person could reach is to become totally indistinguishable from a non-autistic person.
The problem with this line of thinking is that autism is not a behavioral disorder. Autism is a neurodevelopmental disability, it is characterized on a biological level by differences in how individual neurons connect to and interact with other neurons. To way oversimplify things, the autistic brain processes incoming information very differently than a non-autistic brain because our wiring is literally different. On a more practical level, for autistic people this results primarily in differences in sensory processing and motor apraxia. Almost everything that we associate autism can be reduced down to one of those two differences. Autism is not a jumble of disconnected “behaviors.” Autism also really isn’t a “social skills deficit” when you get down to the heart of it, even though we’ve been defining it that way for decades. It is the result of a physical difference in the way that neural connections develop in the brain. When an autistic person cannot do something it is not because we are choosing not to, it is because the neural pathways in our brain necessary to perform those actions simply do not exist. We don’t say that a blind person “refuses” to see or call a wheelchair user “noncompliant” when they can’t go up a flight of stairs, and yet for some reason this sort of language is commonplace when it comes to autism.
The way we should be supporting autistic students is through accommodation: changing the environment to make it more accessible for people whose neural inputs and outputs are different. We already do this for most disabilities. Accessible parking spaces, wheelchair ramps, braille signage, and sign language interpreters are all examples of how we have made our environments more accommodating for people with various disabilities. But the way that most schools currently handle “support” for autistic students would be as if they placed a person with a mobility disability into hundreds of hours of excruciatingly painful physical “therapy” so that the person might be able to slowly drag themselves across the ground unaided instead of simply allowing them to use a wheelchair.
Open AAC access, sensory supports, modified instruction, and just a little bit of respect, acceptance, and understanding for the different ways that we move, think, and feel can go a long way in supporting autistic students, and yet so often these supports are discouraged or even flat out denied. Or worse, used as bribes in a Pavlovian behavior modification scheme (“You can have your chewy necklace after you finish this worksheet.” “You can stand up from your desk in ten minutes if you stay focused the whole time.” “You can have your communication device back after you speak the word “apple” clearly and with the ‘correct’ tone of voice.”). If an autistic person is having specific troubles in an area, they can be addressed with speech therapy for communication needs, occupational therapy for executive functioning and related needs, and physical therapy for motor needs (and by the way if your “therapy” is causing stress and trauma then you’re doing it wrong). But of course, this is rarely the approach that schools take. Nope, usually what happens (especially in the United States) is that the student is stuck in Applied Behavior Analysis and put on some sort of “behavior plan,” despite the fact that autism is not a freaking behavioral disorder! Meet the need, stop focusing on the “behavior.” And might I add that if you actually work on supporting an autistic person in a way that works for them a lot of those “problem behaviors” will go away. “Challenging behaviors” in autistic students, such as meltdowns, are generally simply autistic responses to extreme stress and trauma. So stop traumatizing autistic students with your attempts at “support” through a behavior-focused view of autism. Not to mention the fact that I guarantee you that the student in question isn’t learning much when their brains are in a constant state of fight-or-flight and panic due to an inaccessible environment.
When I was in middle school many of the “supports” I received did absolutely nothing to help me. I had one on one “social skills” sessions where I was supposed to name the emotion on a cartoonish face and we sang songs about how it was important to have empathy. They told me that the reason nobody liked me was because I was a bad friend and that more people would be friends with me if I didn’t talk about insects too much. I was constantly told to stop “overreacting” and was locked in an isolation room in the office for hours on in when I would involuntarily do things like run out of the classroom when I was overwhelmed or was being “disruptive.” In first grade I had to sit out for most of our field trip to the Denver Botanical Gardens when I got distracted by something in the distance and ran towards it. In the fourth grade I was sent home from a field trip to the Rocky Mountain Arsenal Wildlife Refuge because I stood too close to someone while talking too loud by accident, which the teacher interpreted as me being “aggressive.” That same year both my teacher and the school counselors tried to prevent me from going on our next field trip to the Phoenix Mine on the off chance that I might “misbehave” but was luckily bailed out by another fourth grade teacher (and I did perfectly fine on that trip, by the way).
None of this was “supportive” in any way. All it did was cause me additional stress and trauma. I wanted so bad to be “good” but it felt like everyday I was spinning a slot machine and at any time I could land on a spot where I’d get in trouble for something I didn’t even know I did or for something my body did which I had no control over. What I really needed help with was the fact that I was drowning in emotional soup every day. I was in a constant state of angst because my sensory inputs were never regulated. I was never able to turn in homework because I simply forgot about it most of the time and I lost the planner the school provided us within the first few weeks. I couldn’t finish math tests or writing assignments on time because I had trouble getting the right grip on my pencil, then I was called lazy because my handwriting looked like a kindergarteners. I remember in elementary school never getting past the “add one” pop quizzes not because I didn’t know how to add 1 to another single digit number, but because I physically couldn’t write out all the numbers in sixty seconds.
I truly think that behaviorism is the biggest reason why schools are failing their autistic students. It stems from the fact that most people, even people supposedly educated on the subject, don’t actually know what autism is beyond a bunch of “behaviors.” There are self-described “autism experts” out there who don’t know what autism is.
The behavior-centric view of autism is a root cause for much of, if not most of, the inaccessibility that plagues schools around the world for autistic students. Ableism, seclusion, othering, and discrimination is often what results when schools try to address autistic students as if they were essentially just neurotypical students but with behavior challenges.
You know what would have made the biggest difference for me in school? If I were reached out to with empathy, compassion, and love in order to support my erratic brain and body and help me be the best me I could be. But instead, like most autistic students, I was looked at as a kid with a bunch of “behaviors” that needed to be extinguished or deficits to be “repaired.” And I suffered for it. It’s hard to be put through an emotional and sensory hell every day and expected to just “grin and bear it” while at the same time being expected to learn and remember dozens of mostly arbitrary classroom and social rules. It’s hard to go to school everyday with a seething underlying anxiety that you’ll get in trouble for something your body does without you thinking about it (or often having any control over it). It’s hard to face exclusion and harassment from fellow students and then be blamed for it.
The results are of course a high incidence of school-based trauma for most autistic students who are not lucky enough to have been homeschooled from a young age. This undoubtedly contributes to the significantly higher rate of suicide and unemployment that autistic young adults face. Something has to change. The way that autistic students are understood and supported in school environments has to undergo a major rethink. This cannot be ignored any longer.
Ultimately, what we need is a paradigm shift in the way that we understand autism. This is not something that just happens overnight. However, one person at a time everybody involved in education can start to make a difference in their own classroom or school. Here are some things that I’d like to see:
- Embrace the Neurodiversity paradigm. Stop seeing autistic and other neurodiverse students as being broken neurotypicals. Embrace differences in neurology within your classroom rather than expecting that neurodiverse students change themselves to appear neurotypical. Expecting autistic students to try to “mask” their autism and appear as “normal” as possible is widely accepted as being a contributing factor to low self-esteem and even suicide among young autistic people.
- Recognize that behavior is communication. Stop focusing on “how do I stop the behavior” and start asking yourself what is being communicated and what needs are not being met, if applicable.
- Recognize that generally “challenging behaviors” exhibited by autistic students are simply autistic responses to stress and trauma. If a student is having daily meltdowns this isn’t because they’re being naughty or making poor choices, it means their brain is literally in an emergency shutdown because it can’t handle the input it’s been receiving. This is a problem, and it is a sign that something in the environment or routine needs to be changed ASAP. This is just one example, but I assure you that if you focus on the need rather than on the behavior you will have much happier and less stressed autistic students and many of those “challenging behaviors” will go away on their own.
- Stop punishing autistic students for their neurology. Stop putting students who can’t sit still at their desk in time out. Stop excluding students from field trips because they might be “difficult.” Empathize and work one-on-one with students when they have emotional trouble, don’t throw them in isolation rooms. And please, if you do nothing else, stop calling the police on autistic students (yes, this really happens)!
- Drop the reward charts and behavior plans in favor of accommodation. A student has trouble holding a pencil? Let them type their assignments. A student can’t focus while sitting still? Let them pace in the back, or bounce on a ball at their desk. A student has trouble speaking? AAC to the rescue. A student is overwhelmed by the hallway, lunchroom or classroom? Sensory accommodations such as headphones, sunglasses, chewlery, and comfortable clothes can make a big difference.
Now obviously this is a much more complicated and nuanced problem than I could possibly sum up in a blog post, and the solutions in practice are far from straight forward or even easy. But hopefully I’ve gotten the discussion started. Schools are failing autistic students, and we need to do better. It’s time to start now.