A look at whether the mainstream education system is doing the best it can for children with autism.
To decide if our schools are using the best model for our children, we need to think of the environment, the interventions, and the impact of both on our children.
Most school interventions in the US are based on the model of autism in the American Psychiatric Association diagnostic manual (DSM-V). The traditional medical understanding of autism is that it’s a neurodevelopmental disorder diagnosed by observable behavioral characteristics. This is a challenge-based or pathology-based model.
If autism and its manifestations are pathological, it makes sense to try to “fix” them so the children behave in ways that are generally seen as more acceptable. “Evidence-based” gold standard treatments aim to eliminate autistic behaviors.
What’s particularly important about the pathology model is the criteria describing behaviors are based on outsiders observing them. The conclusion that a behavior or routine of an autistic child is “non-functional” is not based on the experience of the autistic child but rather on the ideational framework of the “neurotypical” observer.
There is an alternate model. Increasingly, researchers are talking about neurodiversity—the idea there is more than one way for brains to develop, that biodiversity itself is not a negative, and each different kind of neurodevelopment comes with strengths and challenges. The neurodiversity model is to recognize autism as a legitimate, neurodivergent way of processing experience with autistic behavior as an authentic expression of autistic experience.
Atypical vs neurotypical
According to DSM-V, autistic behaviors such as having routines, special interests, and “stimming” are seen as non-functional rather than as meeting the needs of someone who processes differently. If you navigate the world differently and at a different pace than the majority, it helps having things be expectable, so you know how to react. Transitions and novelty are difficult, and routines are functional in that they provide a sense of being in control. Stimming is a self-calming behavior for someone who can be overwhelmed by the sensory and social environment. Taking a deep dive into understanding behavior means working to understand the perspective and experience of individuals on the spectrum of all ages.
Is there a reason for the behavior?
Most non-academic school interventions focus on behavior. Behavior is often described as avoidant, attention-seeking, oppositional, manipulative, or a variety of negative attributions. That’s because the behavior gets attention and isn’t what we might want the child to be doing. In trying to eliminate the behavior, we often don’t consider what underlies it—what need or experience is being expressed. Instead of understanding and providing empathic support, we are critical of the behavior. According to autistic adults, autistic children experience this kind of misunderstanding and criticism frequently.
Let me give an example with excerpts from an article written by Lisa Morgan, a certified autism specialist and consultant.
Looking through the eyes of an autistic student
First, think of an elementary school classroom. The room is bright and colorful with pictures, charts, a calendar, and completed assignments on the walls. Some colors bother me but there’s enough of my favorite color to be OK. There are desks arranged in a familiar pattern. There are 18-22 kids, one teacher and an aide.
The desks are arranged in configurations designed by the teacher. They are changed several times during the year—a surprise to the students. Most students walking in on Mornings of Change get excited and the regular noise level is much higher.
For me, those mornings are extremely hard. The change is so abrupt. I see the chairs have been moved all around, and I stand still by the doorway, not sure it’s my classroom. My anxiety rises. I panic—I want to find my calming color.
Still standing by the doorway, I start to tune into the sounds of students talking at different speeds, at different decibels, changing topics, with a squeal or two thrown in along with an argument here and there. It’s so hard to think. There are 22 desk chairs squeaking on the floor, pencils being sharpened, the teacher giving directions, and students finding their new seats. Minutes later, I’m still standing in the same spot. I stand rooted by panic brought on by the change, the noise, and the confusion about where to sit. I wish I could find words to explain. My teacher tells me she wants me to move.
She wants me to get ready for the day. If I don’t soon, she said she will help me move. What? Does that mean she’s going to touch me? I don’t want her to touch me. My feet are even more firmly rooted by the doorway. The teacher has on a perfume that the other students say smells real nice, a sweaty student walks by who forgot to put on deodorant. The strong smells are all around me and I can’t get away from them. Anxiety! Still, I can’t move.
The teacher warns me again to go get ready for the day. Now I might be in trouble too! I want to get ready, but don’t know where to go. I can’t think. I need to move. My teacher’s voice reaches me again out of all the other voices and it’s not comforting. It sounds different—angry, I think. She wants me to say something to her. I have no words. There’s too much to think, feel, and figure out.
What do I do? I still don’t know where to go. My teacher asks if I can see the bright tags on the desk with the students’ names on them. There are tags on the desks?
The teacher’s voice is rising and it’s hard to know why. Is it me? I’m trying so hard! I move towards the desks, high anxiety, heart still pounding, hearing noises all around me, the strong perfume smell. A student bumps me, the sudden touch makes me forget everything I was doing and I stand very still once more.
My panic rises again. My skin crawls. I continue walking slowly around the desks and find a tag with my name on it. I’m there! My head hurts from the smells; I’m overstimulated, overwhelmed, so I sit down and gently rock back and forth to calm myself.
My teacher walks over to me and says, “See how easy that was? Why aren’t you excited like the other students! Now sit up straight and stop rocking in your chair.”
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Education is not linear
Let’s consider a typical school Individualized Education Program (IEP). We can imagine this child has a behavior plan that includes, “With one prompt, the student will follow a teacher’s direction.” Another part of the plan might be “The student will not rock in her seat and will use appropriate coping strategies.”
Is the best answer to this situation for this child to stop rocking? Or do we need to understand her shock, confusion, and sensory experience? Does the child feel increasingly anxious and threatened when she perceives the teacher’s voice to be irritated? Does she feel supported when the teacher says how easy it is to find her seat? Most of all, does the child experience school as a safe, empathic environment?
The body has a physiological stress response called the “fight or flight” response that activates the sympathetic nervous system and makes it difficult to focus and listen. Repeated stress can result in a pathological stress response, in which the body’s level of arousal and stress hormones don’t return to a relaxed baseline. With frequent stress, would we expect the child to be able to focus on learning? How can we expect a child to be resilient? Having a deep and accurate understanding of triggers is extremely important.
Returning to Lisa Morgan’s story, we could anticipate an autistic child would have difficulty with the sudden change in the classroom; it would trigger stress. If it’s predictable the class is typically excited and noisy on these mornings and we know this child has acute auditory hypersensitivity, we’ve identified another trigger. If we know odors can also be problematic and the child needs to get away from strong ones, we have a third trigger. Add confusion, the perceived need to find words to explain, and anxiety about the teacher’s response, the child’s panic is understandable.
What might we do differently? We might ease the transition by alerting the children to the change in seating and handing out a seating chart ahead of time. It’s easy to put tennis balls on chair legs to quiet sound and require “inside voices” even when everyone is excited. A teacher with an autistic child in her class might not use perfume. Critically, we would understand any child rooted in one spot is probably struggling—not avoidant, attention-seeking, or manipulative. Occupational Therapists (OTs) are often experts in sensory calming tools; the question is whether a tool preferred by the child is available where and when it’s needed.
My point isn’t to criticize school staff. They intend to be helpful. They address aberrant autistic behaviors according to their understanding of autism and framework for intervention. Since our focus is on the behavior, the legitimacy of the child’s experience isn’t considered.
Let’s be mindful
Taking into account the importance of the experience of the child and the legitimacy of behaviors in terms of experience would constitute a huge paradigm shift in understanding these children and therefore in responding to their behavior. There would need to be acceptance of their autism and thoughtful consideration of the environment they face.
Children often use “stimming” to self-calm. “Stimming” is a movement such as rocking or flapping hands. If a stim isn’t harmful, why do we need to eliminate it? I know a teacher who works with some students who stim. If the student prefers to use a self-calming stimming behavior that might be distracting, he might decide to sit in the back of the classroom, so the behavior isn’t disruptive.
If our concern is that a stim is destructive to the child or property, an OT could help the child find a workable variation. AutismLevelUp.com is a wonderful website that goes into depth about understanding sensory experiences and strategies for handling arousal. It provides free downloadable tools that can be used at home or school.
An IEP plan might encourage an autistic child to use some kind of communication strategy (verbal, using a signal, or pointing to a picture) to indicate sensory problems, to request sensory materials, or to ask for a break. Speech and language therapists ideally can both help script responses and come up with alternate modalities of communication. We would not expect a child panicking or melting down to use language to explain himself/herself or to stop being overwhelmed; that’s basically asking the child to stop being autistic.
The Americans with Disabilities Act (ADA) requires accommodations for students with disabilities. We take having wheelchair ramps as normal. They benefit non-disabled students as well—someone with a rolling book bag or on crutches temporarily can also use the ramp. The ADA covers “invisible” disabilities as well; this could include accommodations for the extreme sensory sensitivities of an autistic student. An autistic student can go to a ”lunch bunch” in a counselor’s office instead of a noisy cafeteria, but one could say this is stigmatizing. Why does someone who needs quiet need a counselor? Why can’t there simply be a quiet lunch space like there’s a quiet car on a train, where anyone who wants a respite at lunch might sit?
Re-modelling education—a teacher’s account
If this seems like a lot to do, consider this Facebook post by Karen Hope Blacher. It went viral and she was on Good Morning America to discuss it.
“All of my students are neurotypical, but my classroom looks very much like a special education classroom. I teach mindfulness and emotional literacy. I provide fidgets and sensory toys. I have a calm corner and use it to teach self-regulation.
“My students are thriving. And that made me realize something. When we treat autistic children the way the world tells us to treat neurotypical children, they suffer.
“But I have never encountered a single human being, of any age or neurotype, who doesn’t thrive when treated like an autistic person. And that got me thinking that maybe neurodiverse people aren’t the only ones who’ve been misunderstood and mistreated all this time.
“Are we worried about how other students might react? We could do a much better job modeling and teaching acceptance of those with differences, whatever the differences might be. Students shouldn’t be acceptable only to the degree that they can fit in by being someone they’re not.”
The school environment and behavior plans can reflect this neurodiversity paradigm of understanding autistic experience. As Karen Hope Blacher says, all students could benefit from having sensory tools, recognition of their emotional states and, I would add, help with transitions, executive function, and clear directions. Most schools have goals of enhancing self-acceptance and resiliency. We can make our schools more difference-friendly for all students to enhance learning and everyone’s ability to develop positive self-esteem and resilience.
This article was featured in Issue 118 – Reframing Education in the New Normal