This is an exclusive BHB+ story

U.S. Health and Human Services Secretary Robert F. Kennedy Jr. said multiple times earlier in the week that autism is an “epidemic” and a “disease.” Industry insiders and advocates en masse have since pushed back.

These assertions are incredibly stigmatizing. You don’t have to be a journalist or some other professional communicator to see quite clearly how both the words and actual positions RFK Jr. espouses can cause harm in the short and long term. Further, they could have considerable ramifications for the autism therapy industry.

The collective American community has made great strides in how we talk about and engage with autism as a concept and a diagnosis. The rise in the neurodiversity acceptance movement is proof of just how far we’ve come. Additionally, the industry has made advancements in treatment over the last decade, particularly in applied behavioral analysis (ABA).

However, as the nation’s top health official, Kennedy’s recent rhetoric — coupled with his repeatedly debunked claims linking vaccines to autism — could jeopardize the progress made on so many fronts

In this BHB+ Update, I’m going to do four things as I assess the impact of Kennedy’s comments and the autism prevalence data that precipitated them:

— Assess the harm of Kennedy’s assertions

— Go beyond the topline data

— Evaluate the short-term impacts and opportunity it creates

— Lay out the worst-case scenario of the long-term impacts

The harm

Every two years, the Autism and Developmental Disabilities Monitoring (ADDM) Network releases its findings on the prevalence of autism. The topline finding of the report released earlier this week is that about 3.22% of American eight-year-olds, or 1 in 31, were diagnosed with autism in 2022, a 17% increase compared to 2020.

The fact that the rate of diagnosis has increased is not surprising. What is surprising is how it’s presenting in specific populations and locations.

“We all expected to see the rates increase, but the rate of 1 in 12.5 for California boys is shocking, even to me,” Kate Sheldon Princi, CEO of Van Nuys, California-based autism therapy provider 360 Behavioral Health, told me. “The data indicates that access to diagnostics and sensitivity of diagnostics are improving, particularly amongst minority groups who historically have seen a disparity in their access to diagnostics and care.”

Sheldon Princi’s assessment aligns with decades of research and a massive shift in the definition of autism with the Diagnostic and Statistical Manual of Mental Disorders (DSM), the public’s awareness of the condition, and the health care industry’s ability to detect and report it.

The world of autism research is vibrant but so very young, so young that we are just a few years away from the death of the very first documented diagnosis of autism. There is a lot we don’t know. But we know more than enough — that autism is not a disease.

“That language is not supported by science,” Timothy Yeager, chief clinical officer with Centria Autism, said on LinkedIn. “It stigmatizes autistic individuals. And it distracts from what matters most—investing in support, inclusion, and evidence-based care.”

While there is some connection to environmental exposure, it’s wildly irresponsible and self-contradictory for RFK Jr. to say, as he did at a press conference earlier this week, that “[Autism] is coming from an environmental toxin, and somebody made a profit by putting that environmental toxin into our air, our water, our medicines, our food,” and that [HHS is] going to look at all of [the potential causes of autism] agnostically … and we’re going to see if there’s a link to this injury.”

One common point across years of RFK Jr.’s advocacy is that federal regulators have failed to protect Americans from the harms of big business due to regulatory capture by private industry, especially Big Pharma. But the way he has approached communicating about autism gives up the game about how he views autism and the autistic: He wants to use autism as a political football to advance his worldview on this and other matters like vaccination and agriculture, regardless of the harm it causes. Challenging big business on safety is a good thing. But severe harm on other fronts ought not to be the price for such a reformer in a place of power.

Stigma is a universal struggle among families with children with autism. According to one international literature review, Western cultures often place blame on parents for their children’s autism. Some Eastern and African cultures connect cosmic punishment to autism for wrongdoing or attribute it to demonic possession. Saying that autism is “a preventable disease,” as he did at the press conference, lays the blame on those ultimately responsible for disease prevention in children, i.e., parents.

What’s more, thinking about autism as a disease with a high burden on society that needs to be cured echoes eugenicist thought.

“There is no cure for autism, and we do not support research searching for a cure,” the advocacy group Autism Speaks says on its website. “As the understanding of autism has greatly evolved over the last 20 years, we removed the term from our vocabulary many years ago.”

Diving into data

Specific ethnic subgroups show wide disparities in the rate of diagnosis. But even with or across demographics, there are notable differences based on location. See some of the data for yourself below. Find the full report, which contains much more data than I present in this article, here.

At the national level, there is a huge disparity between male and female children. For every 1 female diagnosed with autism, there are 3.4 male children.

“ASD prevalence was higher among [Asian or Pacific Islander], Black, and Hispanic children aged 8 years than White children aged 8 years, continuing a pattern first observed in 2020,” the report states. “[Asian or Pacific Islander], Black, and Hispanic children aged 8 years with ASD were also more likely than White or multiracial children with ASD to have a co-occurring intellectual disability.”

The report also looked at children who were four years old in 2022. The rate of identification by that age was higher than the eight-year-old cohort by about 70% across all locations. This further suggests that much of the increase, at least for this report, can be tied to diagnostic sensitivity.

The data also flags an increase in a co-occurring classification of an intellectual disability. In the 2022 data, that rate was 39.6%. That figure was 37.9% for those aged 8 in 2020, according to a previous report.

Doreen Samelson, chief clinical officer for Catalight, told me that the ADDM network is missing information about intellectual disability. This is vital context because “cognitive ability is one of the major predictors of support needs.”

“I’m happy to see we are capturing more of this information, but there’s still a tendency to ignore this important factor in a person’s life while only focusing on autism in a broad sense. While it’s easy to just look at numbers when these reports come out, we need to realize that this isn’t just about numbers—it’s ultimately about people and families,” Samelson added.

The impact of and the invitation in these data

There is no clear or obvious impact from what happened this week. It’s just another news cycle that continues to elevate the already elevated awareness of autism in society. Here’s what ought to be considered:

1. There is and will be more demand for services than the industry can presently provide
2. The autism therapy industry must evolve or fail to thrive
3. The industry must be relentless advocates for itself and for those it serves

Data provides insights. Insights beg for reflection. Thus, now is the time for every organization to consider its next evolution seriously. Would-be luminaries in this space must throw themselves into leading industry-wide change. Why? Because something has to give in this industry

When you take in the challenges of the industry all at once —reimbursement rates, the turnover crisis, waitlists, anti-ABA sentiment and innovations in ABA delivery — you see that the status quo is not working well for anyone. Left unchanged, these corrosive powers will tarnish, weaken and eventually cause the industry to diminish.

At the very least, every organization needs to establish how they can meet more clinical needs, deliver appropriate levels of progress as quickly as possible, and be ready to go to the mattresses with anyone with obvious and provable safety and quality outcomes.

There is another key thing to keep an eye on.

The anti-ABA movement is increasingly prominent and unflappably vocal. Similarly, awareness and acceptance of autism have never been more prominent. For millions of Americans, it is a cornerstone of their identity. A separate study found that diagnoses for those aged 26 to 34 increased by 450% and those aged 35 to 44 increased 338% from 2011 to 2022.

There is a significant overlap between that uber-aggressive movement and the more mainstream autism acceptance and awareness movement. Consider two possibilities: 1. a cultural coalition of the two will activate a much wider movement of awareness and acceptance, or 2. this coalition will open up a renewed social and political campaign against the industry. Thinking about it more, I don’t suppose the two ideas are mutually exclusive.

The autism therapy industry needs to be extremely adroit when considering its place in American society. Part of that is being excellent, the ultimate antidote for many of the industry’s ailments, and having the clinical and moral clarity to know that it’s not the end-all of treatment or even the autistic experience. And where it is right, the industry must be the loudest and proudest defenders of the people it serves.

“I think it’s important for the general public to understand how broad the autism spectrum is,” Sheldon Princi said. “There are many individuals who greatly benefit from intensive care and support in order to maximize their potential and live their most fulfilling lives; however, there are many diagnosed who are perfectly happy without any type of support in their day-to-day lives.”

Mixed long-term outcomes

Nonetheless, considering worst-case scenarios is a must.

If, on the off chance that Kennedy’s language takes hold, it may push parents of children with autism and adults with autism away from seriously considering seeking diagnoses and therapies that could improve their lives. Especially on the pediatric front, that would reduce the total addressable market the industry can serve.

Several people have told me that they also fear that Kennedy’s stigmatizing language will further advance childhood vaccine skepticism. Reintroducing the plagues that the present vaccine schedule has eliminated will severely decrease the likelihood a child will live to the point they would need these kinds of services. God forbid! That opens a whole new Pandora’s box of health care needs that would threaten society at large.

It’s also reasonable to suppose that investors will continue to pour money into the space. Say what you will about the downsides of increased private sector investment, but acknowledge this. Autism therapy and related supports have never been more accessible, in large part due to the investment of the private sector that came after the success of grassroots activists in the establishment of state-level insurance mandates for coverage. These kinds of data are often included in evaluations or prospective investments and will likely confirm the theses of incumbent investors.

Despite Kennedy’s framing of the report and its contents, the experts who created the report don’t share the same conclusions as he does.

“Increased identification of autism, particularly among very young children and previously underidentified groups, underscores the increased demand and ongoing need for enhanced planning to provide equitable diagnostic, treatment, and support services for all children with ASD,” the report states. “The substantial variability in ASD identification across sites suggests opportunities to identify and implement successful strategies and practices in communities to ensure all children with ASD reach their potential.”