Calling Level 3 Support Needs “Severe Autism” Blocks Self-Advocacy

In order to really move forward with how we think and talk about autistic people, we have to address what people know as “severe” autism. I am diagnosed as ASD level 3, which would also be known as “low functioning” or “severe.”

I was diagnosed into adulthood. I lived the entire first quarter of my life being called “smart” and “stupid” simultaneously, copying others out of sheer terror.

How is this possible?

Because we are wrong about what those terms mean.

The stereotypes society attaches to the “profoundly autistic”

I think the stereotypes associated with being “profoundly autistic” are a major contributing factor to why ABA is so harmful. ABA therapy is touted as the solution for managing the “challenging” autistics– those ones who don’t speak; therefore, the ones most vulnerable to abuse.

When most people see a child screaming and flailing, looking all around, unresponsive to people’s communication, not toilet trained, making grunts and gestures, they can’t also see competence at the same time. They see something they must fix.

What I See

I don’t see someone who needs to be fixed. I can look right at a kid displaying all of these behaviors and see myself. And I don’t see myself as broken. You know, by now, autistic people understand each other. And I, too, had low expectations based on my level of life skills.

Support needs have nothing to do with if you can talk or type articulately. We need to address what high support needs can still look like. You can talk. You can walk. You can type your thoughts clearly and be “all there.”

“Severe” autism is not a “type” of autism. Co-occurring conditions which are complicated by autism and vice versa may impact what people see on the outside as “severity” levels.

Self-Advocacy Begins with Self-Knowledge

Even knowing what’s going on inside of us, we don’t have words to express it even if we can talk. Having language that is unique to autistic health and body awareness is a privilege we are denied. Instead, it is treated like a moral failing or bad behavior when we have different needs and experience things differently.

Because I didn’t know what dyspraxia or sensory processing disorder or dyscalculia or photophobia or misophonia or visual processing or auditory processing was, or really, even autism, I have been denied the language I needed to talk about how I was experiencing the world differently from people around me.

No one did.

And all of those things combined rendered me, as a child with a colorful and rich inner world, “non-functional” based on my environment. But we didn’t know that.

When everyone around a child is so ill-informed, it will cause so much pain for that child because we understand enough to know that we don’t understand the world around us.

So we seek guidance from anyone not autistic because we have internalized that we don’t understand anything, and they must.

Despite the hell I’ve been through, I would say I had a better chance of breaking my conditioning than a child who had a diagnosis and was held down by low expectations.

I had just enough outside voices telling me I could do anything– not the same way, but in my own way, in my own time, usually a direct correlation to how comfortable I felt around other people.

Learned Helplessness

It was hard. I had emerged into the world completely reliant on outside opinion, looking for a caregiver in every person I came across, and here people were yelling at me to do things for myself. They didn’t understand why I was so dependent.

I believe every autism “success” story is a person who had just enough of the right support to break through. Even just one person that presumed competence made all the difference.

This doesn’t mean forcing us into overwhelming sensory situations. It means not pathologizing our emotions, infantilizing us, and trying to change our behavior instead of learning how we work.

I had to learn myself how it is that I work.

I had my breakthrough in a psychiatric ward, because although I had learned to push myself, I had a limit. Masking has a limit. Had it been the wrong kind of place? That sought to change me and not give me tools to advocate for myself?

Had my psychiatrist there not recognized in me what I refused to rely on recognizing in myself, I don’t know where I would have ended up. Perhaps with some other diagnosis or a whole list of diagnoses, a note of “aggressive” pacing, falling further and further through the cracks, lost in the system.

What if she had not been someone equipped to view my rocking in the stationary chair with my feet up, complaining of intense sights, sounds, and feelings as autism and acute emotional intelligence? What if I had been given an IQ test instead of recognized as autistic with sensory processing disorder?

The Power of Language

Now, I have the language to articulate my needs and why I am distressed or not regulated. Now, it’s not just “behavior,” but I can learn about my neurology and how sensory input affects me. I can learn to make changes and set boundaries with that language.

It is lazy to write off a whole person as “severe,” and it keeps us and that person from having the specific language we need to describe our experiences. It robs autistic people of their access to self-advocacy.

I don’t know what I would be doing today if I hadn’t been diagnosed. If this difference that I had always been aware of hadn’t finally been given a name, and language to give it meaning. If I hadn’t taken time to figure out what “Level 3 Autism” meant to me… what would I be doing?

It certainly wouldn’t be this.

unmasked24

8 Comments

  1. It’s interesting to see how younger people claim benefit from diagnosis and older people don’t. There are reasons for this. Primarily, older people have had to figure out all the things for themselves that proper diagnosis and support give more readily. Unfortunately, business is still catching up to the concept of understanding the strengths and thinking-style differences of autistics. The mythology and ignorance of autism are dreadfully damaging, of which the terms in the article are a part. As far as we have to go still, it has been worse in the past.

  2. Never heard the term “Level 3” until now, and you have to know a term to use it. When old terms become unfavourable, do you stand gagged from speaking/writing at all for the lack of a term? You are stuck using the old terms + can’t fairly be screamed at, until you read the likes of this + actually discover the new term.
    The cycle will continue. Eventually, as disparagers realise what terms Level 3 has replaced, they will start using it disparagingly, it will get connotations, + we will need another new term. But right now, we can’t know what the next new term will be. The future can’t fairly scream at us for using now the most up to date term available now.

    1. That’s fair enough. Language, like much of humanity, is fated to evolve, and sadly the disparagers you refer to are apart of that. I believe her use of “Level 3” is her setting up ethos needed for the argument, as that’s her current diagnostic description. Considering that the verbiage and criteria surrounding Autism evolve constantly, I don’t think she will be gagged or lack any kind of term in that respect. I certainly wasn’t when my diagnosis changed from Asperger’s to PDD-NOS. What matters to people like myself and the writer, is that we’re not given labels based on our individual “severity” or “function” in favor of just stating our specific support needs, whether high or low.

  3. I’m glad to see that so far nobody has pulled a No True Scotsman on you yet and claimed you don’t understand the “real struggles” of “severe cases” because you know how to type grammatical paragraphs.

    My sister with Down syndrome can’t type paragraphs as beautiful as yours, and yet people never say that she doesn’t deserve a voice in her own story. Nor could I imagine someone using her as a prop to tell other, more capable people with Down syndrome that they shouldn’t be allowed to participate in advocacy.

    I hate that the autism discourse is this way. It shouldn’t be.

    1. Author

      That’s why I emphasize the language we use. If the “real struggle” is someone who can’t speak or type, than that IS something I don’t experience. But it’s not a “type” of autism.

      There are people who don’t do those things who understand things about the world I don’t. What I type is what comes directly out of my mind.

      There are even neurotypical people who struggle to express things the way I do through writting. And I didn’t find my inner thoughts all that beautiful until people told me they were.

      People who don’t speak, who can’t express themselves, are the ones I’m fighting the hardest for.

      1. Yes. Thank you for sharing. We can talk about our life stories, and those are real, just like the stories of those who aren’t yet able to share them in words.

        I’m glad you’re helping advocate for people who don’t have words. I hope that our community can work together to help those people find a way to access words (spoken or otherwise) so they can advocate for themselves.

  4. I’m happy that I took my time out of my day to read this. I was diagnosed as a child in the late 90s (24 now). The terms “severe” and “high/low functioning” have been constants throughout my life. I was considered the autism “success” story in my school, and I agree that it has more to do with the support one receives rather than them as an individual. Which is why I prefer using terms related to “high and low support needs” I hope you and your loved ones are well. Take care.

    1. Author

      Thank you for reading 🙂

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