The political effort to separate autism from “severe autism” is misguided at best

How autistic people experience the world is incredibly vast, with each person displaying distinct traits and no two people being exactly alike. It can be hard to put any group of autistics in a box. Someone autistic may not be able to bathe or button a shirt but can remember every fact about the solar system, or they may be the CEO of a company but not be able to tie a shoe or tell left from right.

Recently, a handful of organizations like the National Council on Severe Autism and the Autism Science Foundation have started a website that spotlights those with “severe autism,” stating their presence is a “growing public health crisis in America.”

Now, what is “severe autism,” anyway?

According to Act Now for Severe Autism:

Severe Autism (sometimes referred to as Profound Autism) is usually associated with the following characteristics:

-Very likely to require 24/7 levels of care/supervision

-may include self-injurious or other aggressive behaviors

-language/ functional communication can be limited

-IQ < 50 (verbal, nonverbal, full scale) indicating an inability to reason for themselves AND/OR minimally verbal speaking in single words

As someone who has worked as a helping professional with people fitting this description, what they say is partially accurate. However, the autistic community finds the term “high-support needs” less dehumanizing and more accurate. For someone with severe apraxia, a motor planning disability, it is impossible to accurately measure their cognitive abilities, especially if they lack the right communication supports.

Focusing on a person’s support needs that must be met, rather than how a person’s neurotype affects those around them or characterizing a human by their struggles, is more respectful. Providing those supports requires patience, financial resources, and sometimes creative ways to perfectly accommodate an individual, but that can be done in a way that presumes competence and demonstrates dignity and respect.

The Act Now for Severe Autism Website

The ActNowForSevereAutism.com website is austere and ominous, with a black background, white text, and headings in alarm red, it presents like a hurricane warning more than an information source. Most jarring, though, is a 7-minute long video featuring disturbing clips of autistic people self injuring during meltdowns. Some are banging their heads against the walls or toilets, others are biting themselves, and some punch themselves in the face.

The clips are difficult to watch for a number of reasons, chiefly because of the pain the featured individuals are experiencing in those moments. It’s also upsetting that they are being recorded during an incredibly vulnerable time, robbing them of privacy and dignity. If a non-autistic person were having a bad day, it’s doubtful they would want their emotional response in the public eye for all to see. If we believe non-autistic people deserve privacy, dignity, and access to consent, the same standards must be exercised for autistic people, too.

“This extreme aggression and self-injury can be dangerous to both the autistic person and those around them,” the narrator says, while showing a father who was scratched. “Caregivers are often physically, emotionally, and financially drained.”

The video remarked on on the autistic person’s behaviors, explaining in a clinical manner the impact of those behaviors with no explanation as to why they happen. The narrator notes that some individuals have self-harmed to the extent they have experienced detached retinas or traumatic brain injuries.

Working with Individuals in an Institutional Setting

I’ve seen meltdowns from people with high support needs, and I can tell you that each one had a reason.

One client, whom we’ll call Alex, had a meltdown on my first day. He wanted to get his toothbrushing done and over with, as he dislikes the way the brush feels. The house had about five staff and two other clients, so there was a lot of noise and commotion, which overstimulated him. He dropped to the floor, hitting himself. Staff then escorted him to his room, while holding blockpads to protect themselves and Alex. He calmed down after ten minutes, with staff being quiet so as not to continue to overstimulate him.

From my observations, the meltdowns can also occur from not having enough control over their lives. Another client whom I’ll call Carlos, would get angry frequently when other clients would get to go into the community before him, since the other client planned it first and the group home only had one car.

Having better access to transportation so that Carlos could spend more time in the community would’ve been a great remedy for his isolation and the dysregulation it caused, but the company could not afford to support Carlos to get the stimulation and community engagement he needed. That is why more state funding for community-based programs is crucial.

Lastly, poor therapeutic interventions and inadequate communication supports frequently trigger meltdowns. ABA therapists would often dysregulate clients by demanding they communicate in a way the therapist deemed acceptable rather than letting the autistic person communicate in the way that was best for them.

For example, one day Carlos was angry because the therapist was forcing him to complete a task he didn’t want to do, so he went up to his room and slammed the door. The therapist said, “Do you need space?”

I replied to her, “I think that’s a good indication he wants space.”

She said, “I just need the confirmation.”

Placing more demands on a dysregulated autistic person will only contribute to heightened anxiety. Carlos was communicating quite clearly through his actions. No matter how many times Carlos would protest and say how much he hates ABA, the agency and his guardian did not end it.

Misery and lack of agency can cause a lot of anger. Instead of being controlled like children, autistic people need a greater degree of autonomy to do the things they want to do and to have their agency respected. This does not mean that care should be abandoned, but that more focus on trauma-informed, low arousal approaches to supporting individuals to live with more autonomy should be the goal.

A great article by Clarissa Kripke helps explain possible reasons for meltdowns and how to identify and prevent them.

It would mean the world to so many families for the state to provide more community-supported resources like respite care and home-based care with direct support professionals to work on increasing autonomy, to support them with activities of daily living, and to provide communication support.

“Well Meaning Advocates”

The video references “well-meaning advocates and policymakers” pushing for a one-size-fits-all approach to treatment and services based only on inclusive settings and integration; however, this is not reflective of the actual messaging of autistic advocacy. Autistic self-advocates and their allies do push for community-based supported living (as opposed to institutions) and against toxic conservatorships that strip individuals of their rights.

The organizers behind this video appear to oppose community based supported living, considering it unsafe and harmful. They imply that inclusive settings are unsafe.

They never outright state that, but it’s hard to think of where else autistic people could go, if not for community settings.

The group home I worked for required, according to state law, that clients be given the opportunity to spend time in the community at least five days per week, which is excellent. In what way is that kind of service counter to the mission of NCSA?

A point of truth

One point the video makes that I can agree with is that autistic people with high support needs are underrepresented and misunderstood (although the narrator calls them “those with severe autism” in the video).

However, showing people in their most vulnerable moments, which the makers of this video have done, is one of the worst ways to do that. Not once does the video say anything positive about autistic children and adults. They are portrayed as the sum of their struggles, as if their lives are little more than the pain they cause themselves or others.

A montage of disabled people suffering is not showing the antecedent to that suffering, either— except in a few clips. One clip shows a young person, maybe a teen or older adult, lying across the back seat of a car. He is distressed and covering his face as he sits up, but a man (presumably his father) shoves him violently and speaks harshly, barking, “You don’t bite your teacher.” The autistic person appears startled and afraid.

A young woman in the video is seated at a table. She’s visibly distraught. A different woman, presumably a service provider, is touching the autistic woman and rubbing her shoulders and speaking to her. The young woman jumps up screaming and flailing her arms towards the service provider.

Autistic advocates often tell parents and providers to not speak to or crowd an autistic person in distress or during a meltdown. Regardless of their ability to speak in regulated moments, most autistic people can relate to the suffering, confusing, panic, and extreme emotions during a meltdown. They provide guidance on how to support autistic people through meltdowns.

Autistic advocates with reliable communication can often relate to the footage in these videos, and we know that meltdowns are uncontrollable and humiliating. We advocate against showing them because they’re dehumanizing and not an indication of what it means to be autistic but an expression of suffering.

We know how to abate that suffering and how to reduce the likelihood of meltdowns because many of us, too, can and do become that dysregulated. We focus on advocating for how to make autistic people happier and whatever it may take to prevent triggering such moments.

If you’ve spent time with autistic people who have high-support needs, you’ll know that they have many positive traits just like any other human being. Autistic people need access to autonomy and supports, and they need to be understood as individuals with passion about the things they love, whether it be Handy Manny, puzzles, astronomy, or art.

Not all autistic people have a marketable talent or savant skill, but regardless, all people have humanity, desires, thoughts, and interests.

The video closes out with a text statement. Part of it reads, “Families of individuals with Severe Autism need a seat at the policymaking table on both the state and federal levels. The voice of individuals with autism who can reason and speak for themselves is not our voice.”

Regardless of how high or low an autistic person’s support needs are, parents could benefit greatly from working with self-advocates. Even if our needs are not exactly the same as their children’s needs, we can give insight into what it feels like to be autistic, what is triggering, what works for us, and how to creatively troubleshoot to understand what causes such severe suffering and distress.

Many autistic people are professional OTs, teachers, social workers, psychologists, counselors, SLPs, and physicians who work with autistic clients. Others are neuroscientists, researchers, professors, or published authors specialized in autism. All of those people are among NeuroClastic’s contributors, along with nonspeaking teens, people in supported living, adults who live on the street, and people with intellectual disability.

There are many nonspeaking and speaking advocates who have experienced traumatic brain injuries, detached retinas, or are covered in self-harm scars. Most of the time, the impetus for those meltdowns was a breakdown of communication or feeling extremely pressured to comply with demands when extremely overwhelmed and dysregulated.

There are many autistic advocates who use AAC to communicate. There are many who wear disposable underwear or incontinence pads as adults. There are nonspeakers and (now) speaking autistics who were believed to be severely intellectually disabled because they didn’t have speech or couldn’t control their bodies to use electronic AAC.

Yet, with all that diversity of experience, the autistic community still has a relatively unanimous consensus about what we need in order to do better than survive.

We want a world all autistic people can equally access and enjoy, regardless of how much support they need to get there.

Who wouldn’t want that?

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One Response

  1. Heartbreaking but so very true. Having a voice is not the only problem here, being listened to and taken seriously is paramount in getting funded and supported for the very real needs autistics have and the truth is neither has been forthcoming.

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