Perhaps you’ve heard something about RFK Jr’s comments about autism recently, or you listened to it. Or you saw his follow up comments to Fox News that were posted on his Instagram. Hot off of paying our taxes all by myself as I have for more than 2 decades, deciding whether or not to file a bad faith claim against UMR while working my two jobs, caring for my son who is currently sick and planning to celebrate my 22nd wedding anniversary…I’m asking myself: what came first, the marriage or the dating? I guess since we did technically go out on dates (that according to RFK may have only been a fever dream or imagination given my Asperger’s) it had to have been the dating that came first. So I guess I did that too. Maybe. Best check with an elected official first, right?
For those of you who missed it, I am referencing comments RFK Jr made recently while promising answers as to which environmental factors he believes are causing increases in autism diagnoses by September. He made these comments after the CDC’s announcement recently that autism diagnosis rates are now 1 in 31 kiddos by the age of 8. This is what he said: “These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball [side note, I have, it’s just not my thing]. They’ll never write a poem [side note, I placed and won in poetry contests when I was younger]. They’ll never go out on a date. Many of them will never use a toilet unassisted.”
Ouch. Double Ouch. I mean, I might actually be loosing track of the ouches.
The reason I decided to talk about this was really because I feel like, after listening to his follow up remarks to Fox News, that it was important to me to share my perspective on this to our family and loved ones. In his interview there, he said that awareness couldn’t logically account for the increase in diagnoses, because you don’t see people of his age with severe Autism out in the community, and he indicated that all of these increases were in the severely autistic. Research doesn’t back him up, neither do statistics based on severity of autism.
The answer to what he is seeing is as simple as it is heart breaking for everybody involved: you don’t see people with severe autism from any generation often in the community. As many of you know, I have been doing public work with Tony for more than a decade. I can only recall two other occasions where I have seen another individual who was level 3 autistic outside of a school setting.
According to the Autism Science Foundation, the percentage of individuals with severe autism has remained steady over the years. They state based on peer reviewed research, “much of the increase in autism prevalence over the past decade has been in people with milder symptoms whose medical and service needs are dramatically different than people with intellectual disability or minimal language.” People like me, who would have previously masked well enough to avoid a diagnosis in youth (as I did). Increased awareness and a higher level of public openness with some reduced stigma I think have helped that along, and this is what researchers are consistently saying about this.
He spends some time also discussing individuals with Autism who are nonverbal in his Fox interview, and I would like to point out that being nonverbal doesn’t mean that they can’t communicate. My son is frequently praised by experienced educators and therapists for the ease and independence with which he communicates about his wants and needs on his speech device. Everything from asking the school nurse to use her bathroom or get him his ADHD meds to telling his school speech therapist recently things like “I am all done” and “I don’t like being told what to do.”
Who does, right? I mean, maybe we can all relate to that just a little bit?
I think that committing to finding credible answers on the impact environmental factors may have in the development of autism in five months that hold up to accepted standards of scientific and academic rigor is like that famous fabled tailor of old offering a certain Emperor amazing clothes that only a select few can see (you know, the ones where said ruler went out flashing all the family jewels because he refused to accept that he was conned and those clothes actually didn’t exist).
The truth is that it can take very hard work to help an individual with severe autism gain skills. I know that, I have done that, I continue to do that, and will keep doing everything I can to support our son reaching the highest level of skills possible. No, the end result won’t look like him living the kind of life I have been capable of. But it also shouldn’t be misrepresented or used as a political justification for ablism or ignorance. We live in this community, and we want to see a community where other family members of individuals with severe autism might feel that they could take their loved one out into that community and not be discriminated against or stared at.
I am super grateful each of you has taken the time to read that. I know anything that touches on politics can be a delicate matter these days, but when politics seeks to shape the type of health care each and every one of us receives, I think thoughtful discussions are required. I am going to end this with Tony yesterday clutching one of his birthday presents from this past week. He popped a fever yesterday, hence the less animated expression. He’s recently developed a love of pigeons, lol.
