The autism spectrum is incredibly vast, with each person displaying a distinct number of traits where no two are alike. It can be hard to put any group of autistics in a box, as there are some who can’t bathe themselves but can remember every fact about the solar system, or someone who is the CEO of a company but who needs help in social situations. Recently, a handful of organizations like the National Council on Severe Autism and the Autism Science Foundation have started a website emphasizing 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, they are people who are very likely to require 24/7 levels of care/supervision, may include self-injurious or other aggressive behaviors, and language/functional communication can be limited. Lastly, the site labels them as having an IQ of less than 50, indicating an inability to reason for themselves. As someone who has worked with people fitting this description as their caregiver, what they say is accurate. However, the autistic community finds the term “high-support needs” more fitting, as it is more accurate in focusing on their needs that must be met, rather than how their condition affects those around them. Taking care of such individuals can require patience and sometimes creative ways to perfectly accommodate them, but it is certainly worth it in the end, seeing them smiling and happily stimming.
What stands out most on this ominous website with a black background is a seven-minute long video displaying high-support needs autistics during meltdowns. Some are banging their heads against the walls or toilets, others are biting themselves, and more punch themselves in the face. The clips are difficult to watch, not because of the actions themselves, but because of the pain they’re going through in those moments. Not only that, but they are also being recorded during an incredibly vulnerable time, robbing them of privacy and dignity. If a non-autistic person was having a bad day, it’s doubtful they would want it published in the public eye for all to see. 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 whole video focuses on the autistic person’s actions, explaining it in a detached and cold manner, rather than expressing empathy and explaining why they are behaving the way they are.
I’ve seen meltdowns from high-support needs people up-close, and I can tell you that each one had a reason. One client, who 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 then 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 Alex wouldn’t be overstimulated.
From my observations, the meltdowns can also occur from not having control over their lives. Another client, named Carl, would get angry frequently when another client would get to go in the community before him, since the other client planned it first and the group home only had one car. Having an extra car so Carl could go out any time he wanted would’ve been a great remedy for him, but the company could only afford one. That is why more state funding for community-based programs is crucial. Also, ABA therapists would often set them off, making them 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, Carl was angry because the therapist telling 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.”
Why do you need confirmation when they’re communicating quite clearly to you through their actions? Pressing the person will only upset them more. No matter how many times Carl would protest and say how much he hates ABA, the agency and his guardian did not end it. Misery and lack of control 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. But for those who elope or may hurt themselves, then supervision is certainly needed in those cases. 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 direct support professionals to come into the home and assist the high-support needs person, especially if they need help cooking or bathing. It creates less work for the parents and creates jobs for others. That can also remedy the issue the video addresses, where it states the caregivers are physically, emotionally, and financially drained. By removing ABA (and providing insurance for more humane therapies like speech and occupational therapy, the SCERTS model, and low arousal), the parents would be more financially stable as well.
Another questionable section in the video is where they talk about “well-meaning advocates and policymakers” pushing for a one-size-fits-all approach to treatment and services based only on inclusive settings and integration. The people in the video appear to oppose this idea, considering it unsafe and harmful. However, they never explain why integration and inclusive settings are not safe. Would they prefer their children in institutions or isolated from the community? They never outright state that, but it’s hard to think of where else they could go, if not for community settings.
The group home I worked for required clients to go out at least five days a week by law, which is excellent. That law should be applied to all settings beyond the autistic person’s family home, as they deserve to have freedom of seeing the sun and being amongst other human beings, regardless of how they behave.
One point the video makes that I can agree with is that high-support needs autistic people are underrepresented and misunderstood (although the narrator calls them “those with severe autism” in the video). However, showing them 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 these children. A better alternative may be telling people about things that could potentially happen such as meltdowns without showing it, but emphasizing how to make them happier and whatever it may take to prevent triggering such moments.
If you’ve spent time with people like them, high-support needs people have many positives just like any other human being. Seeing them happily stimming away can brighten up your day. Observing them being passionate in the things they love, whether it be Handy Manny, puzzles, astronomy, or drawing, can really entice you to join them or watch from afar while they casually show off their unique talents. Not all autistic people have a special talent, but regardless, making them happy can go a long way. Sometimes they may want something right away, so giving them what they want immediately can certainly make them feel regulated. As someone who can get impatient himself, I empathize with them, as well as for many other reasons.
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, we want a world all autistic people can equally benefit. Who wouldn’t want that?