Autism is not a Diagnosis. Autism is People.
I am going to change up a bit with this blog to respond to the grossly inaccurate and misrepresented commentary offered this week by the HHS Secretary, Robert F Kennedy Jr. I’d suggest a great many folks and about all families/primary caregivers of persons with autism are aware of the uniformed and offensive references Kennedy offered related to those on the autism spectrum.
Kennedy described autism as a “preventable disease,” a statement which is false and without any scientific basis. Of course, Kennedy has no scientific, medical or research training. He has, however, long profited from anti vaccine conspiracy theories and autism pseudoscience. Autism is a complex diagnosis driven by multiple genetic factors which are still being examined. ASD is also a remarkably heterogeneous condition (or set of characteristics) and the rise in prevalence numbers is wholly unrelated to any specific ‘environmental toxin’ OR vaccinations.
Besides the fact Kennedy’s primary comments have no legitimacy in science, scientific research, or reality, it may also be seen as a veiled attack on families in the claim that, somehow, doing one thing differently would have changed everything. Unfortunately, such misassumptions have been long in autism literature. From a range of environmental ‘toxins’ to include electromagnetic fields, heavy metals and vaccinations to social dynamics with a particular emphasis on maternal parenting style, absolutely none are causal for autism.
Leo Kanner and the Fallacy of Parental Causation
Autism was first identified by Leo Kanner in 1943 which he represented as a ‘neurodevelopmental disorder with specific difficulties related to social interaction, communication and repetitive behavior.’ Even though Kanner’s article referred to ‘inborn’ causes, he also shared overly broad assumptions with regards to parenting which included ‘long, negative descriptions of the parents of children’ he’d identified with autism.
The assumption of parental causation has always been flagrantly incorrect but persists. It also became the ongoing theme starting with Kanner extending well into the 1960s and early 1970s. This was highlighted by Bruno Bettelheim’s 1967 dearly mistaken representation of the ‘detached, refrigerator mother’ and ‘aloof and weak father’ as responsible for the occurrence of autism. Bettelheim also incorrectly claimed that any subsequent biological differences came directly from these parental interactions rather than being part of what we now recognize as the autism spectrum.
At Aurora Behavior Services, we know that children with autism are not ‘diseased.’ The reference to autism as an ‘epidemic’ is also way overused though this reference has also been made by many to include autism special interest groups. Autism Speaks! has talked about ‘combatting autism’ which, to me, means combat against people.
We also know parenting styles are not remotely causal to autism and that autism is not a disorder which happens ‘after birth.’ Based on extensive national and international research, we know vaccinations neither cause autism nor have any relevance to increased prevalence rates. If Kennedy did not bring in his own long standing and misaligned agenda, he could have easily looked up this information for himself. That he hasn’t is also telling.
Constant references to autism as a medical and public health crisis (or epidemic) are misleading and counterproductive. Children and adults with autism, along with their families/primary caregivers, would be much better served by a view of autism as a Crisis Of Instruction and Learning where environmental change and increased authentic family and school support combined with the use of best practices in behavior analysis and instruction would be prioritized. Again, autism is not a ‘disease process’ but represents a cluster of behavior, social and learning characteristics that can occur at very different levels of intensity across different people.
Autism Pseudoscience
One of Kennedy’s selected ‘scientists’ to lead his money wasting HHS study is David Geier. Geier was disciplined by the state of Maryland’s Board of Physicians in 2011 for practicing medicine without a license. Geier, who has an undergraduate degree in biology, along with his father Mark, an MD who lost his medical license in multiple states, have also pushed hard on the false vaccine/autism connection
Together, the Geier’s ‘treated’ children with autism using dangerous and unproven therapies which included Lupron injections, a drug for late-stage prostate cancer also used for chemical castration of sex offenders. David Geier’s selection by RFK Jr to head HHS’ autism study shouldn’t be a surprise since Geier will move towards and already agrees with the results Kennedy expects.
Though most if not all such outcomes will be dismissed by professionals, it will further contribute to the dangerous big money cottage industry of autism biomedical pseudoscience – the exact world in which Kennedy and Geier reside and from which both have profited. Dangerous biomedical and related interventions are not relevant to autism in the same way insulin is ordered for Type I Diabetes or bronchodilators are prescribed to those with asthma.
The reality is that far too many biomedical interventions are rooted in long invalidated conspiracy and connected theories which fit the criteria for pseudoscience. Pseudoscience is defined as the:
Demonstration of benefit based on anecdotal evidence and unsubstantiated testimonials.
Indifference to true individualized abilities and the potential for improvement based on maturity, legitimate instruction, and environmental impact.
Denial of authentic scientific procedures, research and practice.
Claims that the lack of success is because the family (and other caregivers/providers) are doing something wrong; and
Refusal to put their claimed methods and protocols through a clinical peer review process to demonstrate that the results are replicable to others who do not, themselves, share a primary investment in the outcomes
Go down the list and check off each one which applies to the supposed research and false claims of RFK Jr and his now lead ‘scientist,’ David Geier.
Aurora Behavior Services Prioritizes Strength and Success!
Kennedy’s statement that “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" made it clear he is shilling for his own anti-vax and autism biomedical pseudoscience industry. He would’ve been better served to have thought twice about this statement – then not made it at all.
At Aurora Behavior Services, we prioritize what children with autism can do and know that ALL children can learn and contribute. We prioritize strength and focus on the ‘Relevance of Behavior Rule;’ that is, targeting goals and learning outcomes that will matter for the child and their family into the future rather than just making pretty graphs. Kennedy’s mischaracterization is not only an insult to families and their loved ones with autism, both children and adults, but makes clear his distinct lack of knowledge about or understanding of the autism spectrum.
Kennedy’s Regressive Agenda is Rooted in an Earlier Autism Service Model
Kennedy pushes a preconceived and incredibly regressive agenda in the same way did Bettelheim, Kanner and Ivar Lovaas before. Lovaas, of course, created the intrusive, punitive, and often dehumanizing Discrete Trial Training methodology which originally looked to shape almost unconditional ‘obedience’ or compliance by treating a diagnosis while ignoring the child. Though many autism agencies continue to provide services which are rooted in this same DTT model, Aurora Behavior Services does not use DTT or the often related and routine use of edible (and electronic) reinforcers. Never.
Lovaas’ DTT assumed that child development occurred in a largely straight line and predetermined direction and that variations in development risks potential ‘disorder.’ DTT also uses long since discredited ‘developmental therapy’ which intended to fill in the supposed holes in the development of children with autism regardless of how the children responded. This, in part, strongly contributed to the more intrusive and punitive nature of DTT based on the intent to push kids to ‘recover’ these gaps in development.
Authentic Research and a Real Future Direction
Based on authentic research, both quantitative and qualitative, we know that child and adolescent development does not move in a straight line for a great many children and gaps or delays in supposed developmental milestones are most often not at all malignant but rather common across ALL children. We also know that child development is influenced by cultural and environmental priorities, often based on that which is most valued by specific groups.
With this, I can share a personal example. My mother told me that I didn’t start using full sentences of any sort until after the age of 3. Even at the time, her friends shared numerous concerns for me and my future. But I did start talking soon after and have more than made up for the initial delay by continuing to talk ever since!
As Kennedy rattles on, it becomes ever clearer how little he understands about the full autism spectrum, families and the people on the spectrum. RFK Jr uses conspiracy theories and pseudoscience as his start and end points.
I have long specialized in persons – children and adults – on the ‘profound’ end of the autism spectrum. Though many of these folks need more intensive support and instruction, Kennedy’s characterization of what they can’t do is sadly misinformed, offensive and self-serving since his goal is to ‘prove’ long since invalidated autism conspiracy theories and pseudoscientific ‘treatments’ while helping to feed more money into the anti-vax and biomedical autism industry.
Instead of sinking a huge amount of HHS resources to ‘prove’ Kennedy’s flawed and dangerous long-standing agenda, that money would be far better spent towards providing the resources and support needed by the range of children and adults on the autism spectrum to very much include those considered ‘profoundly’ affected and their families.
Increasing Resources that Matter
Instead of continuing to push flawed and long disproven conspiracy theories, money should be dedicated to better training providers ranging from the medical community to schools and community services. Money should be spent towards therapeutic day care, respite services and preschools.
Enhanced resources for children and adults with ‘profound autism’ are long overdue with children and parents often caught in a socially constructed loop of daily frustration and significant challenges. For many of these families, even trying to find legitimate, capable and compassionate services can be a struggle. And as children with autism become adults, more money is needed for safe, therapeutic residential and community services which include vocational training, resources, and individual opportunities.
Aurora Behavior Services
Aurora Behavior Services welcomes all children with autism. We use natural learning models rather than DTT and have extensive expertise and experience serving those on the profound end of the spectrum. We take the time to listen to every family and get to know and understand every child. We prioritize independence, autonomy, functional communication and social competencies along with behavioral and learning readiness driven by best practices in behavior analysis and instruction.
We know that autism is not a diagnosis – but people – and we are devoted to maximizing the Success! of every child and every family every time.
References
AMA Journal of Ethics (April 2015); Mothers and Autism: The Evolution of a Discourse of Blame https://journalofethics.ama-assn.org/article/mothers-and-autism-evolution-discourse-blame/2015-04
Bettelheim, Bruno. The Empty Fortress: Infantile Autism and the Birth of the Self. New York: Free Press, 1967.
Jacobson, J. W., Mulick, J. A., & Schwartz, A. A. (1995). A history of facilitated communication: Science, pseudoscience, and antiscience. American Psychologist, 50(9).
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
People Magazine (17 April 2025), RFK Jr. Says People with Autism 'Will Never Pay Taxes, Hold a Job, Go on a Date,' Sparking Fierce Backlash; https://people.com/rfk-jr-claims-people-with-autism-will-never-work-find-love-or-pay-taxes-11717083
Sandler, Lou. (2009). “Is Autism Really a ‘Public Health Crisis? Looking Through the California Blue Ribbon Commission’s Report on Autism.” California Journal of Health Promotion 7 (1): 76–85. https://doi.org/10.32398/cjhp.v7i1.1322
STAT (26 March 2025), Vaccine critic’s apparent selection to head HHS autism study shocks experts; https://www.statnews.com/2025/03/26/rfk-jr-vaccine-study-of-autism-links-led-by-vaccine-critic-scientists-shocked/