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We Must Honor and Acknowledge PROFOUND Autism Too

We Are Here VideoBy Anne Dachel

A commentary in the Pittsburgh Post-Gazette on April 7th immediately got my attention because it is the reality check we all need.

While USA Today is out to convince readers that having a child with autism is normal and just “a part of human diversity,” the mother of an adult son with profound autism describes her incredibly difficult life.

The headline makes clear what autism isn’t.

Rose Baumann: Misunderstanding autism: It’s not just a different way of being

Rebranding autism

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.

Profound autism  

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.

IACC promotes “neurodiversity”

(IACC is the federally funded Interagency Autism Coordinating Committee created by Congress that has spent the past 20 years watching the autism rate explode from one in 166 to one in every 36 children without effectively doing anything about it.)

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. . . .

“There is no such thing as profound or severe autism”

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.

The autism we never hear about

Rose’s story:

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. . . .

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.. . .

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 intervention. . . .

This is where we are at. While thousands of news outlets around the world are promoting autism as something to  be accommodated and celebrated this April, and while the neurodiversity movement disputes those wanting to prevent or cure autism, there is a huge portion of autistic individuals who aren’t getting Autism Acceptance coverage in the press.

They are the 30 percent who will never live independently or earn a living on their own. This population will cost every government unsustainable amounts of funding. Right now we just pretend they don’t exist. Perhaps that’s why we never hear about them.


DenialDenial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future

By Dan Olmsted and Mark Blaxill
Skyhorse Publishing

Even as the autism rate soars and the cost to our nation climbs well into the billions, a dangerous new idea is taking hold: There simply is no autism epidemic.

The question is stark: Is autism ancient, a genetic variation that demands acceptance and celebration? Or is it new and disabling, triggered by something in the environment that is damaging more children every day?




Nonverbal individuals with autism often fall into the category of profound autism. Approximately 25% of individuals with autism have limited or no spoken language. Language delays can significantly impact their ability to express themselves and communicate their needs. My Indigo Card

L land

33% profound
Another 33% that can cannot function independently
15% that can function and are concerned quirky
15% that can function and celebrate their different way of thinking


The denial of the fact that many autistic children and adults have profound behavioral challenges is a lie that will only continue to block efforts for the medical community, autism researchers, the CDC, NIH and society to see the need for RESEARCH into finding a true reason and cure for the severely affected. The neurodiversity people are high functioning and have normal lives with no need for research or help for their mild condition. They can go on with their lives just like everyone else without autism and are doing a huge injustice to the thousands of children and adults who have a more severe form of autism and can not go on and live their lives without tremendous support and services. Many suffer from co-morbid conditions like my adult son who has epilepsy and needs daily medication to control his seizures. Society can not support all these more severely affected people now with staff shortages, high staff turnover rates, low pay that causes support staff to leave for better paying jobs, and closing of programs as a result. April should not be used as acceptance month or celebration month for the thousands of individuals and their families who desperately need the RESEARCH into the causes and cures for our more severely affected individuals NOW!

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