There is a strong push from the “severe autism” lobby to distance what they consider “low functioning” autistics from “mild” autistics. The autistic community challenges that narrative because autism is not a continuum of mild to severe as it’s not a disease like Ehlers Danlos, asthma, or cancer. Autism is a word to describe how a person is atypically wired.
Some people have wiring differences that cause profound and visibly noticeable disability. If someone is severely apraxic or has severe inhibitory impairments (inability to stop movements, impulses, or vocalizations), then others will notice. If someone has severe visual or auditory processing deficits, people don’t notice. If someone can’t sequence or has severe executive functioning deficits, that usually is treated like willful laziness or intellectual disability.
Autistic people are people with neurodevelopmental differences, and some of those are more apparent than others.
The stereotypes associated with being “profoundly autistic” are usually related to behaviors that are explained by severe motor planning deficits (difficulty executing purposeful movements) and disinhibition.
Disinhibition can be seen in Tourette’s, tic disorders, OCD, ADHD, addiction, mood disorders, and mood disorders. It means that a person has difficulty with, or an inability to, stop intrusive thoughts, regulate emotions, or prevent movements– which can include speech or sounds.
Therapies for autism are often aimed at managing the “challenging” behaviors of people who may have no way to demonstrate their abilities and capacity due to motor planning deficits. They may not even be able to control the direction of their eyes or turn of their heads.
In mild form, this may look like clumsiness, hyperactivity, poor handwriting, difficulty with tying shoes, slow or stuttering speech, or delayed reading. In severe form, it may look like a person screaming or making sounds, flailing, grabbing food off people’s plates, randomly hitting themselves or others, repeating phrases without context, throwing things, smearing feces, or spitting.
In OCD, which many autistics experience, intrusive, repetitive thoughts become compulsive behaviors. People with severe motor planning deficits can be unable to stop their bodies from engaging in actions similar to intrusive thoughts. This can look like teeth grinding, overeating to the point of misery, or nail biting at the mild end. More severe cases may include highly disruptive behaviors– digging out teeth, peeling off the skin, hitting self or others, grabbing own genitals, screaming, or eloping– even into traffic or bodies of water.
Many autistic people with co-occurring genetic or health conditions— which do fall on severity scales— get labeled as ”severely autistic” when a more accurate description may be that co-occurring conditions are severely impacting them.
Many autistic people have immune modulated or autoimmune conditions that cause swelling of the meninges around the brain or a spike in cerebrospinal fluid, resulting in behavioral changes that get dismissed as “severe autism.” The danger of this is that a person with inflammation around the brain is vulnerable to traumatic brain injury, life-threatening behaviors, or even death.
To recap, “Severe” 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.
If we don’t know what dyspraxia, sensory processing disorder, dyscalculia, photophobia, misophonia, visual processing, auditory processing, hyperacusis, hypermobility, dysautonomia, alexithymia, PANS/PANDAS/autoimmune encephalitis, IBS, candidiasis, chronic variable immune deficiency, rejection sensitive dysphoria, seizure disorders, or other co-occurring conditions or phenomena are, parents and professionals are left with no way to address the specific needs of others.
Kids and adults are rarely informed about how their autistic brains and bodies may perform differently. We cannot meet specific needs if we have no motivation to understand them beyond an oversimplified ”mild-to-severe” scale.
Autistic people have their true needs misunderstood and dismissed because the non-autistic world has neglected to learn with any kind of nuance what exactly autism means.
We condition autistic kids to seek and accept guidance from anyone not autistic, then they internalize that they don’t understand anything, and others must— setting them up to be vulnerable to exploitation and abuse because they have learned that everyone else is an authority.
As adults, it is our responsibility to understand autism beyond the black and white, oversimplified mild and severe false binary and to explore all the complex ways neurology and biology impact observable behaviors.
Those who wish to impose these oversimplified categories are not trying to support autistic people. They are vying for ownership of the narrative surrounding autism so that they have more leverage to secure funding and influence legislation.
These lobbyists seek to maintain the ignorance of the general population by weaponizing parents’ fear and lack of knowledge to keep their financial and professional interests in power. They market themselves as the champions of parents without ever empowering them with any nuanced understanding.
Autistic people who are labeled as severe are immediately dehumanized and their potential is misunderstood or overlooked. Complex medical conditions causing pain, seizures, OCD, or widespread inflammation are treated as behavioral. Motor planning and disinhibition are treated like intellectual disability.
Conversely, those who have fluent speech have their support needs ignored— a truth that leads to unemployment, arrests, homelessness, addiction, PTSD, and astronomically high suicide rates. If they are ”mild,” they must not have real needs.
This false binary means that any autistic person with the access to communicate with words gets painted as not understanding “severe autism” or being “mild.” Those without access or not doing public-facing advocacy are painted as having “severe” or ”profound” autism and “needing [lobbyists] to be their voice.”
This argument is harmful to all autistic people and erases their complexity and nuance. It benefits no one but lobbyists trying to serve their own interests that depend on public and lawmaker ignorance.
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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.
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.
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.
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.
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.
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.
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.
Thank you for reading 🙂
It’s me again! I wanted to let you know that your post has been mentioned here: https://quantumlivingpsychology.wpcomstaging.com/2021/02/09/talk-respectfully-autism/
I’m so glad you had a breakthrough and are in a good enough place that you can write articles like this one. People need to hear voices like yours.