Although I’m relatively new to neurodiversity activism, having only started a few months ago, one thing is clear in my research: high-support needs (mostly nonspeaking) autistic individuals are typically underrepresented, marginalized, and dehumanized in the media, whether that be the news or on social media.
Although autistic people are perceived poorly by society in general, it’s clear that high-support needs individuals have gotten the worst end of it. When I search YouTube for “nonverbal autistic,” all I see are somber news stories of kids or adults lashing out and their families struggling to make sense of their behavior.
It’s hard to watch, not because of the autistic person’s behavior, but because their families were never given the proper tools or education to understand why their child behaves the way they do.
To me, this situation is in great need of change.
As autistic people, our brains are wired differently; but most family members of autistics seem to have trouble understanding that notion. I’m not here to make a call to action like the infamous Suzanne Wright made before she died wherein she implied that the “autism crisis” was urgent enough to warrant military intervention.
I’m here to hopefully at least get you all to think about the fact that the high-support needs autistic members need our attention and our platforms and our support– drastically.
For the low-support needs people like myself, I feel it is imperative that we don’t take our privileges for granted. It also means that we should not overlook the potential of those with high support needs.
When parents use the classic “not like my child” argument against us and we don’t know what to say, then that should let us know that we have learning to do.
We need to be prepared for such occasions, and that starts with thinking about high-support needs individuals and researching about them as much as possible, especially from their own perspectives.
Right before I started my self-advocacy journey, what really ignited my passion was an argument I had with my parents over dinner. A few days prior, my stepmother had compared being autistic to having cancer (anybody thinking of a certain video here?).
A few days later, over dinner when there was time for a lengthier conversation, I asked my stepmother why she had compared autism to cancer. She told me that autism is a debilitating disease and that it should be cured, which enraged me immediately.
My reply was, “That is the most evil thing you’ve ever said. How dare you.”
In response, she said, “Have you met my little cousin? She’s a teenager and still in diapers. She can’t talk. Why would anyone want to suffer like that? You’re very fortunate that you can talk, hold down a job, have friends and relationships, and live independently.”
So I told her, “The main thing that makes us suffer is people like you who can’t accept us for who we are.”
Unsurprisingly, her comeback to that was, “Black people wanted the same thing. Look how that turned out.” Justifying bigotry with more bigotry.
As you’d imagine, she never had to struggle in the way people of color in the United States have for centuries, given that she grew up and lived in middle-class suburbia her entire life. The argument kept going back and forth from there; but ultimately, I just walked away, because there was no reasoning with her.
Despite how difficult it was to sit through without fully lashing out, it was the kind of argument I needed. At that time, I had no idea what difficulties many other autistics experienced, like gastrointestinal (GI) issues, epilepsy, and self-injury.
I used the rage my stepmother inspired to light the fire needed to truly take my activism seriously. As I’ve researched nonstop, what I came to realize was that these people were not broken or defective like the narrator’s said… they just need care and unconditional love.
I put unconditional in bold because that kind of love can be a daunting task for some, almost like trying to reach nirvana while practicing as a Buddhist.
With the recent banning of the GED shock devices at the Judge Rotenberg Center, there is still much to be done to give those with high-support needs the attention and love they deserve.
As I’ve discovered, Jessica Frieder, who works as an advisor at Autism Speaks in Western Michigan University, is also one of the board members for the Judge Rotenberg Center. It’s a good thing to know, especially given Autism Speaks’ ableist reputation that they don’t take responsibility for to this day.
It doesn’t surprise me either, since Autism Speaks has represented the school at their walk events in the past.
After seeing the infamous video of Andre McCollins’ torture (warning: extremely disturbing footage), I realized just how difficult many of the lives of those who don’t have the executive function skills many of us have can be.
Watching that video made me realize that while all autistic people are incredibly vulnerable, people like Andre with high support needs are the most vulnerable, and taking action will hopefully improve their lives as well as the rest of us in the long run.
To understand how to identify and prevent self-injurious behaviors without having to shock a human being, this article by Clarissa Kripke, MD, will guide many in the right direction for anyone who’s curious. Just remember this, no autistic person hurts themselves for no reason. But when they do hurt themselves, it’s for reasons that cannot be expressed in the way that neurotypicals expect.
If we have the time to educate others, teaching them such ideas would be a great start, so that way our people are less likely to be shipped off to institutions where they are treated as less than human.
One must consider eloping as well, which can be common among some high-support individuals. An occupational therapist can help advise about ways to safely equip a home to prevent eloping.
Some autistic people experience extreme sleeplessness. Parents sometimes report aggressive behaviors in their children. Meltdowns can also be difficult for the autistic person and their family members. Severe food allergies and even difficulty controlling motor movements can impact quality of life for a lot of us.
Where to Go
For the parents reading, I know that raising a child is not easy, whether they are neurotypical or neurodivergent. It’s never been easy, nor will it ever be easy. However, if you ask an autistic adult for advice on your child, they will give you something you’ll not find from doctors or representatives from the organizations mentioned above: wisdom from first-hand experience.
Believe it or not, numerous autistic individuals, no matter how eloquently they speak, have endured many of the challenges you see in your child. Even as a low-support needs individual, I myself have experienced echolalia and other traits you find across the spectrum.
But that’s the beauty of autism being a spectrum. We’re all so different, yet we can accomplish amazing feats for many years to come if we all band together along with the parents of the children we wish to help.
As for the activists, I hope you learned something of value and that this can help you in your own advocacy endeavors, as it has helped mine.
- The Problem with ABA - March 7, 2021
- Nickelodeon: It’s Time to Listen - April 19, 2020
- Not Like Those Children: What that really means to an autistic person - March 22, 2020
They dread it, they run from it, truth arrives all the same.
They dread it, they run from it, but truth arrives all the same.
I think that many people who talk about “those” children are talking about people who likely also have severe co-occurring conditions.
Epilepsy is not autism. GI tract issues are not autism. Anxiety disorders are not autism. Illnesses should be cured. And if we funneled money into curing those terrible things instead of preventing autistics from existing, it could help so many autistic people (myself included).
And I wish more non-autistics realized that just because someone can talk or type doesn’t mean they aren’t seriously disabled.
Hello John. Thanks so much for putting this piece together. I am an ADD dad of a sweet currently nonverbal autistic boy and helping him anyway I can is what I want to do.
He has been uttering more words sporadically so it seems as though he wants to talk more but maybe his hearing or something else is going on?
Though not totally neurotypical myself, I don’t always understand his mannerisms but I know that stimming, running, swinging and humming gives him comfort.
My greatest wish for him is that he reaches his full potential, knows that he is loved wholeheartedly by his baby sister, Mom and I and that he becomes his own best advocate.
The fear that I have is that he is soon to turn 5 and in my state of MD, public school is the path. However, I disagree as ABA is on the menu there.
This little fella is not a bunch of behaviors to be extinguished….in fact, he does not have any behaviors that need be extinguished. Do I want him to eventually care for himself?
Ofcourse. Do I feel that ABA’s method of teaching him activities of daily living are the best way? Absolutely not. Sorry for the long-windedness……ultimately I am taking more of a developmental-relational track and DIR Floortime is what I have chosen. Do you know if anyone has had success with this?
Again, thanks so much!