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Adults with autism often face a dearth of service options despite billions of dollars of public and private investment into behavioral health care.
This lack of adult-specific, neuroaffirming therapy reveals blind spots on the part of both the autism therapy and outpatient mental health space.
“The education programming is not very robust at all in autism or ADHD, so there are a lot of providers who just simply — quote, unquote — don’t get it,” Dani Rodwell, co-founder, and client relations and communications director for Neurospark Health, told Autism Business News. “[Therapists] continue to utilize conceptualizations of autism and ADHD that are very much outdated, stereotypical and historically meant for children.
“So, the lived experience part, with all of our providers being neurodivergent, positions us in a unique place to make sure that we understand our clients.”
Co-founded with Julie Landry in March 2023, Neurospark Health offers fully virtual diagnostics, therapy, coaching and assistance with Americans with Disabilities Act accommodations. Its largest business source is diagnostic services, which reach 45 states. Rodwell and Landry are clinicians and neurodivergent.
Rodwell said it’s challenging to find providers with the right expertise and lived experience to serve its growing client base. The company presently employs about 15 people.
The challenge that Rodwell describes is well known within the industry.
One survey study found that 70% of therapists self-report not knowing enough about autism as the top reason they would not treat such a person. About 55% reported they would refer a person with autism to a specialist or another therapist with more training. The same study finds that many therapists hold incorrect perceptions of autism: 73% of therapists quizzed in the survey incorrectly identified autism as an emotional disorder; 66% wrongly identified prevalence rates in “industrialized countries” as having higher rates than others; 57% mistakenly said most autistic people are affected by intellectual disabilities.
The study concludes, in part, that autism in adults without other disabilities “seem to be a blind spot in psychotherapists’ education.”
A separate survey of adults with autism finds that many view mental health services — broadly defined to include psychological, counseling and medication assistance — as the most valuable they’ve received in the two years before their response.
The survey found that 37.5% rated mental health services as the most helpful, with employment services (20%) as No. 2. However, 17.5%, the third largest response, reported they didn’t use any services. It also cited other research that notes large cohorts of autistic adults do not use any services.
While not a focus of the survey, the report notes the number of adults identified as having autism is increasing.
“The demand for adult services by a growing autistic adult population is projected to overwhelm the current adult service delivery system,” the survey-report states.
Today, some population estimates place the share of autistic adults in the U.S. about 2.21%, up to age 84. Other data show that diagnoses are growing at an eye-popping rate for adults. One study of electronic medical record data found that the age cohort that has seen the largest increase in the rate of autism diagnosis from 2011 to 2022 was in those aged 26 to 34 years, an increase of 452%. The third highest was among those aged 35 to 44 at 338%.
(It’s key to note the No. 2 fastest-growing group is among those aged 0 to 4 years old, reflecting increased awareness and sophistication of autism diagnoses at young ages.)
Meeting people where they are
Given the relative nascency of therapies that support autistic adults, it’s vital to ensure services align with what the population actually thinks of itself. While no group is a monolith, research finds key differences between how neurotypical people conceptualize autism compared to those who are autistic. One study finds that there is a statistically meaningful difference between beliefs about addressing autism via therapy of those with and without autism.
That often means services that are both offered in places where those with autism are comfortable and with specific service types that enable, rather than treat, those with autism or other neurodivergent diagnoses.
Hero Journey Club, a digital non-clinical mental support startup, offers 80-minute, professionally moderated group sessions that focus on practicing coping and resilience techniques — all while playing a video game.
“These members often share that gaming-based group sessions feel more natural and less intimidating than traditional talk therapy settings,” Sandra Rodriguez, director of growth for Hero Journey Club, told ABN. “Members often tell us that participating in gaming-based group sessions feels more natural and less intimidating than traditional therapy settings.
“The format helps them connect, open up, and engage without the pressure to mask or perform.”
The startup generates revenue via a $160 monthly subscription. Because its services are non-clinical, Hero Journey Club cannot be covered by insurance, Rodriguez said.
Similarly, Neurospark Health operates on a cash-pay basis. For the time being, that is a key strategic consideration.
“There are some benefits to not taking insurance, for example, protecting the confidentiality of clients’ diagnoses and allowing us to not have a waitlist,” Rodwell said. “It allows us to be this specialty practice. Some places take insurance, and I’ve heard their volume increases to the point where their quality suffers.”
Considerations for the future
To some degree, awareness of the need and opportunity to fill the void exists, as reflected by investment in the space.
San Francisco-based Hero Journey Club, co-founded in 2021 by Brian Chhor and Marc Simon, secured $14.6 million in funding in late 2023. Earlier this year, Prosper Health, a Weston, Florida-based therapy provider specializing in providing services exclusively to autistic and neurodivergent adults, raised $16.2 million.
Prosper Health also focuses on virtual diagnostics and therapy. Its services help “autistic individuals develop communication and social skills while addressing emotional challenges and co-occurring conditions like anxiety or depression.”
However, its services are offered on an in-network basis — with contracts with many large payers, including Aetna, UnitedHealthcare, Cigna — as well as via cash pay. Prosper Health did not respond to a request for comment.
The variance in approach reflects an oft-debated tactic among young digital behavioral health companies. It’s typical for smaller or newer organizations to seek to build a case for their business to investors and payers alike by first generating a book of business that is focused on cash-paying clients.
However, building organizations that seek to support autistic adults may be something of a stretch for either autism therapy or outpatient mental health incumbents or for entrepreneurs.
On top of the reasons articulated above when it comes to therapist skill and familiarity with autism, the industry has a tendency to gravitate to serving what are coined the “worried well,” a population of consumers that may or may not be best served by therapy. Some research shows that, of the increased engagement among Americans in therapy, “individuals who had a higher income, were employed, and were college educated had significantly higher teletherapy use than their counterparts.” That same research found that those with mild to moderate “distress” have engaged in therapy more than those with serious distress.
On the autism therapy side, nearly all of the industry is focused on pediatric behavior interventions, especially early intervention, to set up greater independence and more potent life skills later in life. The bellwether statistic that has driven much of the general cultural conversation about autism is the prevalence rate among 8-year-olds as measured by the U.S. Centers for Disease Control and Prevention.
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