MISUNDERSTANDING AUTISM

It’s not just a dierent way of being

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 TikTok 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-ofbeing 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 fromdocuments 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; spikesin 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 individualswith 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 intransportation 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 intervention.

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. So, the autism community can label its awareness month however it chooses, but those supporting loved ones with profound autism will always acknowledge the autism they live with as a disabling condition, not just in April but every month of the year.

Rose Baumann is a Washington County parent advocate and fulltime caregiver for her adult son with profound autism. Lynn Johnson, who has twice been a Pulitzer Prize finalist, has worked for LIFE, Sports Illustrated, and National Geographic Magaine, in which she has published 40 feature stories. Her website is: www.lynnjohnsonphoto.com.

Lynn Johnson photos Nick, who has profound autism, with a bandage from an injury he suffered while experiencing sensory overload.

Nick, who is profoundly autistic, experiencing sensory overload.

Lynn Johnson Nick’s father Dave never leaves his side. When he threatens to become violent, Dave takes him to the basement, where laying on the cool floor calms his body and mind.