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Severe Autism

“When you meet one person with Autism, you’ve met one person with Autism.” – Dr. Stephen Shore, autistic professor of special education at Adelphi University.

In response to my last column, in which I discussed if public events should be censored according to the varying levels of autism, a Rockaway Times reader emailed the following question—What is severe autism? Admittedly, I oftentimes bristle at this question. When I meet “high-functioning” individuals on the spectrum, I become star struck at their abilities. For example, if they are attending college, is an amazing artist or can read a book. Then, I can’t help but wonder about my daughter. Soanirina is 13 years old, nonverbal, needs assistance with daily living skills, and I’m truly unsure if she could spell the shortened three-letter abbreviation of her name—S-O-A. Hence, when words pop up like, “low-functioning,” or “severely autistic,” I simultaneously tear up and become defensive. Media stereotypes of autistics as savants in movies such as “Rain Man,” or the television series, “The Good Doctor” make me wonder—what about my Soa? Not all autistics are savants. According to the SSM Health Treffert Center, in fact only one in 10 autistic persons have any savant abilities, let alone the prodigious skills of Dustin Hoffman’s Raymond Babbitt.

According to the National Council on Severe Autism (NCSA): “As with many issues in autism, there is no scientifically precise definition for what constitutes ‘severe.’ We consider this term to encompass those who satisfy the diagnostic criteria of the DSM-5 (American Psychiatric Association’s Diagnostic and Statistical latest Manual of Mental Disorders), and who, by virtue of any combination of cognitive and functional impairments, require continuous or near-continuous lifelong services, supports, and supervision. Individuals in this category are often nonverbal or have limited use of language, have intellectual impairment, and, in a subset, exhibit challenging behaviors such as elopement, aggression, self-injury, and/or property destruction that interfere with safety and well-being.” Organizations such as NCSA believe severely autistic individuals with greater needs and lesser functioning abilities are not getting the level of help they truly need due to a lack of resources, as well as underrepresentation in research, and many other problems. They are calling for the recognition of severe autism in the DSM.

I agree that autistics with more challenges should get more support. Soa definitely needs all the help that she can get to live a functionally fulfilling life. However, as my granny oftentimes says, “We see today, but we don’t see tomorrow.” Today, my daughter may not speak, but she can ice skate, rollerblade, skateboard and snowboard, so maybe she too is a savant like Raymond Babbitt, except in her case—with boardsports. And maybe tomorrow, (as I dream every night), that I will wake up to her cursing me out like a sailor with an explicitly rich vocabulary. Soa, forgive me for comparing you to others. You are beautiful. You are smart. You are amazing as God designed you to be. I’m blessed to be your mummy.

Rockaway Beach Autism Families’ next family support group meeting is Thursday, September 22, 7 p.m. to 9 p.m. at Knights of Columbus (333 Beach 90th Street). All are welcome to share and learn from each other, plus a guest speaker will address the OPWDD program, Self-Direction. For more info, email: kami@rockawaybeachautismfamilies.org or visit Rockaway Beach Autism Families on Facebook/Instagram.

Join RBAF in “Turning the tide for the autism community, one wave at a time.”

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