Earlier this week, the present HHS Secretary, Robert F. Kennedy Jr., took intention towards autistic individuals with excessive assist wants—individuals like my grownup son, claiming with unapologetic eugenic fervor that “Autism destroys households, however extra importantly it destroys our best useful resource which is our kids. And these are children who won’t ever pay taxes, they’ll by no means maintain a job, they’ll by no means play baseball, they’ll by no means write a poem. They’ll by no means exit on a date.”
I used to be infuriated, not least of all as a result of this assertion got here on the heels of his disturbingly pseudoscientific declare that he would discover the reason for autism in 5 months, but additionally as a result of a lot of the work we do right here at TPGA is to assist individuals perceive that every one autistic individuals have inherent price and worth purely by present, that they’re beloved, that they deserve any helps they might want, and that so most of the roadblocks to autistic individuals and their households residing their finest lives are on account of lack of understanding and acceptance, not due to autism itself:
I see RFK Jr. has gone full “ineffective eaters” about autistic individuals. This odious idea, that everybody has to contribute to society and never be a burden to others, is drawn straight from the Nazi eugenics playbook.
My autistic son won’t ever work. He issues. We love him. He deserves a very good life.
— Shannon Rosa (@shannonrosa.bsky.social) April 16, 2025 at 5:40 PM
RFK Jr.’s statements had been so essentially mistaken and hateful that they succeeded in doing what many in our neighborhood would have deemed unattainable: Catalyzing the Autistic Self Advocacy Community and Autism Speaks (and lots of different orgs) to situation a Joint Assertion on Upholding Scientific Integrity and Supporting the Autism Group:
“We’re deeply involved by rising public rhetoric and coverage choices that problem these shared ideas. Claims that Autism is “preventable” isn’t supported by scientific consensus and perpetuate stigma. Language framing Autism as a “persistent illness,” a “childhood illness” or “epidemic” distorts public understanding and undermines respect for Autistic individuals.”
However in fact, one phase of the autism neighborhood was overjoyed by RFK Jr.’s feedback: The Profound Autism Mother and father, or, as I name them, the Autism Grievance Mother and father. These dad and mom are notable for his or her poisonous mixture of resentment over having disabled youngsters and fury at anybody who dares to query the vile methods they publicly discuss these disabled youngsters (particularly if these critics are themselves autistic or disabled). They assume RFK Jr. has their again, which implies that each he and they’re united in making autistic individuals’s lives even more durable and extra stigmatized than they already are.
So let’s discuss these dad and mom, their self-defeating tackle what autism means to them, and why they’re so woefully misguided. This text was initially written in 2021, however as with lots of our traditional articles, I’ve needed to replace it due to this period of mega-platformed resurgent hateful ignorance.
It’s not shocking that sure dad and mom of high-support autistic persons are searching for to segregate their very own youngsters through the label “profound autism.” Mother and father of high-support autistics—dad and mom like me—usually aren’t given good info on how you can assist our autistic youngsters who’ve speech or mental disabilities together with their autism.
Mother and father like me may additionally really feel remoted when autistic children of all assist wants get lumped along with our high-support offspring, as when your youngster’s disabilities are actually apparent, it may be laborious to acknowledge that they share autistic traits like a necessity for consistency and sensory sensitivities with youngsters whose assist wants are much less apparent.
We dad and mom could then discover ourselves getting annoyed by the normal autism neighborhood as a result of it contains and is led by individuals we understand* as having decrease assist wants than our personal youngsters. We would falsely imagine that inclusive autism areas can’t probably serve our households. We would imagine {that a} label like “profound autism” will assist our kids, and our households. However this strategy is misguided, and it is advisable to perceive why.
When dad and mom like me imagine “profound” autism is a separate situation from “excessive functioning autism,” our personal youngsters’s diseases, or widespread co-occurring situations like migraines or Tourettes or anxiousness can get neglected, unaddressed, or written off as “habits” or simply “extreme autism.” Such dad and mom could get annoyed when approaches like Utilized Behavioral Evaluation, which ignores autistic wants in favor of conditioning “regular” behaviors, backfires.
And due to the relentless negativity, fearmongering, and pseudoscience that seeps into media protection of autism, “profound” autism communities are additionally usually magnets for fogeys whose aim is to treatment or deal with autism, as an alternative of understanding how you can assist an autistic youngster—particularly if that youngster has different disabilities. After which when “nothing labored” as a result of all of these dad and mom’ children are “nonetheless autistic,” and everyone seems to be offended and feeling hopeless, the dad and mom are left claiming that “nobody” is addressing their “profoundly autistic” youngsters’s assist wants, so they should create a separate class.
But when the dad and mom of “profound” autistic children would join with all of the communities that embrace their children, like the incapacity and communication communities along with inclusive autism communities, they’d be so significantly better off. The non-autism incapacity communities, particularly, are usually extra oriented in the direction of problem-solving for his or her children’ rights and lodging and medical wants. They get equally offended concerning the lack of assist sources as a result of there IS a scarcity of assist sources. However additionally they are inclined to view adults who share their youngsters’s disabilities, and the worth of their shared, lived experiences as the precious sources they’re, as an alternative of rejecting essential allies and helps.
Why is it so laborious for fogeys of autistic youngsters to grasp which sources they want? One roadblock is a society that tends to view autism and incapacity as scary unhealthy issues, and see disabled individuals like our kids as burdens. As well as, most mainstream autism sources had been developed by professionals who haven’t gotten over the concept incapacity is unhealthy, or who aren’t a part of the autistic or incapacity neighborhood, and who didn’t seek the advice of autistic individuals—so these sources are inclined to middle on how you can make autistic individuals simpler for non-autistic individuals to dwell with, as an alternative of specializing in autistic individuals’s happiness and well-being. And since a household is often solely as completely happy as its least completely happy member, and since most households are usually not given details about serving to autistic individuals be completely happy, this implies too many households with autistic members are usually not completely happy ones.
Mother and father who aren’t themselves autistic or disabled and who depend on these mainstream autism sources could due to this fact don’t have any steering for viewing their youngsters positively. They might not see their children as who they’re, however somewhat as what they aren’t. They gained’t have the lived context to show their youngsters self-acceptance or self-advocacy, which suggests their children could not be taught that they deserve and have the precise to no matter lodging they want. Once more, these won’t be completely happy households.
But when dad and mom get their details about parenting autistic children from the autistic neighborhood, they are going to discover individuals who assume that their children are superior, and should be completely happy, and wish their dad and mom to really feel the identical manner. The dad and mom will find out about autism from individuals who had autistic childhoods. They’ll discover out that the best way their autistic youngster socializes is completely regular—for an autistic individual—and that many social communication difficulties go each methods. They discover out that the kid’s robust pursuits can deliver them deep pleasure, their repetitive actions can deliver them peace, and their insistence on sameness can assist them deal with an unpredictable world. They discover out that issues that non-autistic individuals take into account “no huge deal” are literally a really huge deal for autistic individuals, like noises and flickering lights and consistency and processing delays and surprises. They be taught to respect and work with the autistic youngster’s communication model, particularly if the kid makes use of echolalia, scripting, or various communication strategies like typing or iPad apps. They’ll discover out that autistic individuals take into account ABA remedy a type of torture, and that on the similar time some kinds of speech remedy and occupational remedy might be essential.
When dad and mom get details about their children’ disabilities from the incapacity neighborhood, they are going to discover individuals who assume that their children are superior, and wish their dad and mom to really feel the identical manner. They’ll additionally assist dad and mom perceive that significant inclusion in class issues greater than token mainstreaming with out helps, that interdependence and with the ability to make selections matter greater than changing into utterly unbiased, and that being a part of a neighborhood means elevated private security whereas segregated residing means elevated private peril.
If dad and mom rely purely on the “profound” autism neighborhood, they’re unlikely to seek out the sources their youngsters want. So we have to unfold the phrase that folks can get further steering from disability-centric organizations that additionally welcome autistic individuals, like Little Lobbyists, which focuses on youngsters with complicated medical disabilities; The ARC, which focuses on individuals with mental and developmental disabilities, or CommunicationFirst, which focuses on individuals with communication disabilities—along with autistic-led orgs like The Autistic Self-Advocacy Community, which advocates for autistic individuals of all talents, and your autistic and non-autistic associates right here at TPGA—all dad and mom of high-support autistic youngsters who are actually taller than their moms.
When dad and mom discover truly helpful sources, the households and their youngsters might be a lot happier. This doesn’t assure that the whole lot will likely be fastened! However that’s as a result of our society doesn’t but present the advantages and sources to assist autistic youngsters and households correctly, and likewise as a result of parenting is difficult, and since all youngsters have the potential to require extra helps than their dad and mom had ever imagined—no matter whether or not they’re disabled.
*Each autistic individual qualifies as disabled, so each autistic individual wants some form of assist and lodging—and that is true even when an individual is ready to speak, go to a mainstream college, or work in a daily job.
