Every negative stereotype of ND advocates in one column

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As we leave behind the capricious days of March for the hope of True Spring in April, members of the autism community prepare to commemorate Autism Awareness/​Acceptance Month. Like many “awareness” months, April has been officially recognized by state and national leaders as a time to acknowledge a disorder and a population that has historically been misunderstood, mistreated, and misrepresented.

Unfortunately, there is a movement afoot within the autism community that might abolish the need for an Autism Awareness/​Acceptance month altogether. The growing population of neurodiversity advocates seem to be mainly autistic self-advocates with low support needs, plus scores of self identified autistics, many of whom get their diagnostic authority from Tik-Tok videos or “You might be autistic if” quizzes online.

If they continue to tell the world that autism is not a disorder, the official keepers of the World Awareness Calendar can reassign the month of April to another cause.

The shift in narrative
For those with profound autism, a group the U.S. Centers for Disease Control estimates at approximately 27% of the entire autism population, this shift in the narrative from autism-as-a-disorder to autism-as-just-another-way-of-being has done considerable harm.

Their needs must be elevated rather than dismissed. Without awareness of the struggles profoundly autistic individuals and their caregivers face, there will continue to be a lack of public policy, research, and support services to adequately address their significant needs.

The notion that autism is not a disorder, and therefore no treatment or cure is needed, lies at the center of the neurodiversity argument. It is an argument which, by the way, is often articulated by well-spoken autistic self-advocates who are living successfully in the community.

Not only is this giving the general public a skewed view of the clinical presentation of autism, but it is influencing government policy at all levels. The Interagency Autism Coordinating Committee, a cross-agency committee that advises the U.S. Secretary of Health and Human Services on matters related to autism, for example, has jumped on the neurodiversity bandwagon.

The IACC has begun sanitizing the language they use in their communications, softening the clinical descriptors that have been the defining characteristics of autism for decades to make them more agreeable to neurodiversity advocates. Descriptors like “self-injurious behavior,” “co-morbidities,” and even seemingly benign phrases such as “at risk” and “prevention and treatment” are being scrubbed from documents and dialog.

Even the very diagnostic labels used to differentiate the levels of severity of autism spectrum disorders are being called into question by some neurodiversity advocates.

Esteemed organizations like the Lancet Commission, which utilized the diagnostic label “profound autism” in a 2022 report, have been called out by the neurodiversity language police who claim that there is no such thing as profound or severe autism. The American Psychiatric Association’s use of levels 1, 2, and 3 in the latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to delineate symptom severity and support levels within the autism spectrum has been rejected by some advocates as unnecessary and discriminatory.

I beg to differ
As a parent of a profoundly autistic young adult son, I beg to differ.

No other descriptor besides “profound” is sufficient to describe the things my son struggles with on a regular basis: self-injurious behavior that is so pervasive he wears a protective helmet 24x7 to prevent brain trauma and facial fractures; spikes in aggression that can come out of nowhere, causing property damage and injury to those in his path; anxiety that can trigger incidents of elopement from the home or, worse, a moving vehicle; and communication difficulties that prevent him from telling anyone when he hurts, what he fears, or who may have harmed him (an occurrence that is far too common amongst individuals with profound autism).

And our family is not alone. Across Pennsylvania, there are hundreds, perhaps thousands, of individuals who struggle with this purportedly “nonexistent” form of autism. Families like my friend Donna’s whose young adult son’s autistic rages have sent school staff to the Emergency Room with concussions and have resulted in transportation companies refusing to drive him to school because of his aggression while in transit.

And families like my friend Kelly’s, who live in one of Pennsylvania’s many rural communities where services for individuals with disabilities are scarce but, for her son, are unobtainable due to his severe behaviors. He is a young man with such intractable OCD that visitors must immediately remove their hats (or he will remove them, and not gently), presumably because heads should not be covered.

His many sensory issues mean that Kelly is unable to cook while he is awake because he can’t tolerate a lit stove. The windows in Kelly’s home are covered with plexiglass to protect the windows, and her son, from his penchant for headbutting.

Unforgettable realities
There is resplendence and joy on this end of the spectrum, to be sure. The youth who knocked the fireplace mantle out of the wall with his shoulder has curated an eclectic iTunes playlist that any avid music lover would envy. The one who requires a dose of ketamine just to get through a routine blood draw is also the young man who will press his cheek to his mother’s in a rare moment of calm and ask her to speak softly into his ear.

We cherish these qualities and moments, but we can never forget the realities of profound autism. It is a disorder, despite what those currently holding the mic claim, and it is one for which families like Kelly’s and Donna’s and mine will never stop seeking treatment and interventions.

Words matter, and when we don’t use them to accurately describe the clinical symptoms of a disorder that is as inherently debilitating and life-limiting as profound autism, we take political correctness to a dangerous and irresponsible level.

Sigh...

Again and again and again; what makes the autism profound? Do they actually know?


Is their autism truly profound, that they are indeed trapped in an overwhelmed and unreliable body? THEY need treatments to make lives easier and accessible.

Or, their autism is not truly profound; that whoever is piloting the body has intellectual disabilities and cannot handle the autism that is not necessarily profound?
One can only make this person's life easier and more comfortable, but it will go nowhere but quality of life; avoiding meltdowns for one.


Research of profound autism? Fine.

Research to distinguish what does 'profound autism' means other than "nonverbal", "had to be hand fed and being in diapers", "aggressive" and whatever constitutes as 'tested as low IQ'.

Are those with profound autism are autistics with profound autism or intellectually disabled autistics that do not necessarily have profound autism?

I could care less if their support needs are the same.
I'd rather have that question asked. Preferably answered.

There are non-autistic people with intellectual disabilities that have a high need of support and that behave in a dangerous way to themselves and others. So why is it so hard to understand that autistic people with intellectual disabilities will have more severe problems than highly intelligent ones that are equally autistic? Of course an intellectually disabled person with (or without) autism deserve a lot of support. But just because somebody is autistic you can't blame every problem they have on autism!

So in a contest of who got here first to lay claim to autism those with severe autism win by many decades.

When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIE

Anyone claiming this person didn’t have a disorder would have to be high on LSD or have a level of ignorance beyond help.

So why should this mother be told she has to “accept” her son’s condition as normal why would she celebrate her son’s condition?

Autism is a spectrum of severity get over it

In the absence of proper diagnostic mapping and sub categories acceptance is an inappropriate word for a disorder that destroys many people’s lives.

By all means accept autistic people but not accept the disorder itself two different things.

ND advocates should be concentrating their efforts for more research to sub categorisation of autism then they can then go ahead and campaign on a re think of the type of autism they think should be a natural difference rather than alienating many autistic people and gas lighting the public by claiming the sky is green

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When they use the term profound autism they are referring to these types of people

https://m.youtube.com/watch?v=j4PTf7LgsIEn

I got around today to watch this. What this mother has to deal with is really difficult for her. She needs support and help. She seems to be very stressed out but her son deserves to be treated and supported in an other more calm way than she exhibits here. That said, there is no excuse to expose her son like this in a you tube clip. Is that even legal?

LOL course its legal he`s an adult and his legal guardian (mother consented) Its a tv clip news report for the purpose of raising awareness and information.

Adults with severe mental disabilities like severe autism & dementia are regularly on TV doc & news reports, even louis theroux did one

Of course many in the ND movement would like such people hidden away out of sight like the old days, wouldn't want it ruining their narrative i guess

Here`s another adult with severe autism- 6.20( BBC news report )

https://www.youtube.com/watch?v=puhlYl9W1Dw

That's exposing people in a vulnerable situation for no benefit at all. People that need to know already know. I have worked with people like these in the videos in different settings like group homes or special needs schools for over 20 years. I don't se how anything showned in these videos supports your arguments about autism or how it could be threath to the neurodiversity movement. I think these videos are hurtful. People with no knowledge about autism will not get a better understanding of these individuals with a high support need but will probably see them as monsters or freaks.

Multiple autisms or not even that, multiple conditions that have autism as a symptom

On this I agree. At this point the diagnosis autism is a symtom - like "chest pain". A neurological and developmental disorder where some affected have an 150 IQ and win the Nobel Prize while others is intellectually disabled and have to live in an institution with 24 h support exhibits an extremely broad spectrum. It's hard to believe that it is the same underlying condition that has such different outcomes.
But my point is that as long as you have the symtoms and qualify for a diagnosis you have the same right to claim your autism as anyone else. You don't get a diagnosis without having problems. People that are described as "high functioning" have real problems, maybe not for being disabled in a traditional way, but for being different and acting weird or being labeled as rude. Autistics without a learning disability have a 9 times higher suicid rate than the rest of the population. So it's not all champagne and sunshine on that side of the spectrum. I don't think people are celebrating getting a diagnosis like they won a prize or like it's a badge of honour. I think they are happy for getting an explaination for their problems and a validation that they are not a failed or lazy person that could have done better if they only had tried a little bit harder.

Yes agree 100% , although don’t think it’s the newly diagnosed behind all the crazy stuff that gets pushed out there.

Personally I was the most “militant” in the months after diagnoses. Looking back overcompensation for low self esteem. As I became aware of and opposed to cancel culture/wokeness I came to realize that in some ways I was thinking the same way as those I was criticizing.

If not the newly diagnosed who is behind the crazy stuff?

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Personally I was the most “militant” in the months after diagnoses. Looking back overcompensation for low self esteem. As I became aware of and opposed to cancel culture/wokeness I came to realize that in some ways I was thinking the same way as those I was criticizing.

If not the newly diagnosed who is behind the crazy stuff?