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Autism Functioning Labels Do Harm, Here's Why

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High functioning? Let’s make the decision to ditch the functioning labels and just give everyone on the autism spectrum what they need.

Here’s why:

Too often, influential adults, like teachers and (some) parents believe some autistic children are so “high-functioning” that they don’t need the best-practice supports. In other words, they make the incorrect assumption that intelligence and verbal ability have nothing to do with the neurological differences that have resulted in an autism identification.

When the autistic child can speak and possesses average to superior intelligence, these influential adults misunderstand and consequently ignore the impact of the things that make us autistic in the first place: social challenges, non-verbal communication challenges, and sensory and motor challenges.

Is the implication that the smart, verbal child can “decide” to stop being so awkward by choosing to listen when we tell them something? If they don’t take our sage advice (which often is ridiculous and goes something like, “Stop being so dramatic! It’s not itchy!” or “If you don’t act nicer, no one will want to be your friend!”) then they are “choosing” to be difficult?

We have a very long way to go before society truly accepts that autism is simply a different way of processing information in the brain, and that if we could be allowed our experience instead of being ridiculed for it, we could head off a whole heap of misery in the form of mental illness and damage to the family dynamic.

Let’s make this simple: every autistic child should get what they need — not what the uninformed think they need.

I work hard to rebrand autism — to shift from awareness of autism toward true understanding and acceptance — I’ve got to ask: where is our government in this? We know what autistic children need and yet we give them none of it. Literally. None.

Let me explain:

Autism is a social communication disorder. This means that by the diagnosis, the student with that identification is going to have challenges communicating in typical ways. They may communicate, but be so out of sync, awkward or inappropriate in their social approach that they are not successful in establishing friendships. They may not be able to find the right words to say when overwhelmed with emotion, and so they are misjudged as rude, unfeeling, immature, inattentive. They don’t know what they are communicating with their body language and tone of voice and may be unaware of what you are communicating with yours. They may be oblivious to context or to the hidden curriculum or expectations in various environments.

Successful communication involves a communication partner — a child who monologues and doesn’t let you get a word in edge-wise has a problem communicating, as does the child who takes a long time to say anything at all due to slower processing speed or anxiety.

What do schools do with these children?

Well, right now, the practice seems to be to reprimand and correct rather than teach. We point out all the times a student is autistic, shame them for it, and tell them we expect better. Sometimes this is done kindly; very often it is not.

Autistic children need three things from our schools:

1. Individualized curriculums that teach social understanding.

This is essential: social success is a greater indicator of success in life than academic ability. Effective curriculums for autistic students will embed social skills instruction into the school day. They will be taught in the way that is often most successful with autistic learners — with reasoning, with logic, with role modeling and with relevant situations to increase engagement.

Nothing will be taken for granted. Children who experience a social faux pas will not be chastised because after all, their lack of knowledge represents a gap in the teaching or the way the lesson was received. Teachers will redouble their efforts to help the child to understand.

2. Individualized curriculum that focus on the specific communication differences of the verbal autistic child.

This means we will need educators that have a comprehensive understanding of what it means to be a verbal person and have a communication disorder. Since the words we use are only 7 percent of our meaning, these teachers will focus on teaching these children the non-verbal skills necessary to ensure they are sending the message they intend — and that they are reading the messages of others correctly as well. These curriculums will prevent students from misunderstanding the intent of a question, a project, an assignment, and will help students find ways to ask for help when they need it.

3. Individualized curriculums will understand and respond to the child’s sensory and motor profile.

We now know that up to 90 percent of people on the autism spectrum have sensory and motor differences that impact their emotional and behavioral responses.

This means that children who cannot focus on learning with 25 noisy, unpredictable peers in a busy classroom will be placed in smaller, calmer settings. Those made uncomfortable by the constant din of fluorescent lighting, who are accused of being aggressive because they don’t understand their own strength or personal space boundaries, who meltdown when confronted with lengthy instructions, who are highly anxious in anticipation of or during gym class, who freeze when presented with writing assignments –will get exactly what they need to move forward with self-esteem intact.

Occupational therapists with expertise in this area will be a central part of any successful team creating environments and experiences that mesh with the child’s experience of the physical world.

I’m not asking for much. I’m just asking that kids diagnosed with a social communication disorder get the support they need starting now. The way our systems of support do it now — pointing out what is considered wrong or bad or weird — is having disastrous results. The stats show 80 percent unemployment rate for people on the spectrum, the lowest workplace participation of all disabilities, rates of anxiety and depression that range from 40 percent to 80 percent as a direct result of not being understood and accommodated, and suicidal thoughts and attempts that are 28 times higher than for a typical child. So-called “high-functioning” autistic people die by suicide at nine times the average rate. This is some real s#!*.

So, ya. Ditch the high-functioning label. Let’s give each child what they need, and let’s start now. What’s really “high,” are the stakes.

 A version of this story originally appeared on Autism Goggles.

Getty image by DGLimages

Originally published: October 28, 2018
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