Defending RFK? Sort of.....

 Recently, RFK has been on the war path to find a reason to what is causing autism.  "Kennedy said many autistic children were “fully functional” and “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.”
He also said, “Most cases now are severe. Twenty-five percent of the kids who are diagnosed with autism are nonverbal, non-toilet-trained, and have other stereotypical features." (PBS News, Apr. 23, 2025)

I immediately recognised my son in these statements. 27% of individuals with autism have what is now termed Level 3 autism, or profound autism. He was not referring to the autistic people who require lower levels of support. Of course, they need help as well, but not to the extend level 3 individuals do. In an earlier post, I called it "intense" autism. The spectrumisation (I know, not a real world) of autism, combined with the ability to diagnose what was once ignored, is what has caused the rates to rise so dramatically. This is completely missed in the RFK speech. He points to environmental triggers, and most of us know where that is going as he rushes to find the cause by September, 2025. 

So while I am skeptical of RFK and his unhinged thoughts and remarks that ignore most of the autism world, I am grateful that he seems to have opened up a discussion and even a venue for caregivers and parents of level 3 autistic people to share with each other. The social media in this area has blown up. It is embarrassing and difficult to share hard experiences, and people don't want to hear or see them. But we, in the level 3, intense, profound world, find it helpful that people are now talking about it!

So what are levels in autism? According to Autism Canada, these are the levels. Full disclosure, I have not heard the levels described clinically until very recently. 

From Autism Canada, these are the levels. RFK was referring to level 3. 

TABLE 2  SEVERITY LEVELS FOR AUTISM SPECTRUM DISORDER

Level 3: “Requiring very substantial support”

Social Communication:

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.

​Restricted, Repetitive Behaviours:

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

​Level 2: “Requiring substantial support”

Social Communication:

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and who has markedly odd nonverbal communication.

​Restricted, Repetitive Behaviours:

Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.

​Level 1: “Requiring support”

 Social Communication:

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

​Restricted, Repetitive Behaviours:

Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.