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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