People with autism are four times as likely to experience depression in their life than typically-developing peers. Despite the increased risk, people with autism or other neurodiversities often face significant obstacles when seeking mental health care.
Barriers like clinicians’ lack of specialty training, staffing shortages and pitfalls with payers often prevent neurodiverse people from accessing care for mental disorders like depression, anxiety and mood disorders, despite increased risks.
Even getting a diagnosis for a mental disorder can be difficult because of a phenomenon called diagnostic overshadowing.
Diagnostic overshadowing occurs when a neurodiverse person presents new symptoms, but clinicians write the new behavior off as part of their neurodiversity.
“They may begin banging their head on the wall, crying, isolating, not wanting to go to school or to work,” Jen Riha, vice president of programs at I Am Boundless Inc. said. “There’s a tendency to just say, ‘Well, it’s because of their autism. It’s because of their intellectual disability.’ Rather than to say, ‘Well, maybe they have depression or anxiety and they would really benefit from mental health treatment.”
Ohio-based I Am Boundless Inc. is among the few providers offering a continuum of care for neurodiverse people, including counseling and psychiatric services.
Once mental health problems are recognized, commonly used treatments can be effective.
Providers can treat patients using standard therapies, including cognitive and dialectical behavioral therapy, with sometimes minor modifications.
“Sometimes we look at folks who are neurodiverse or [have] an IDD diagnosis as having a different ability to feel than the general population and that’s not true,” Stacy DiStefano, CEO of Consulting for Human Services, told Behavioral Health Business. “They just need a different kind of provider that understands the nuances that go with that diagnosis.”
Finding a mental health professional willing and able to treat a neurodiverse person is not always possible.
“There is very limited capacity, and in some places no capacity, for people with intellectual and developmental disabilities to get mental health treatment,” Riha said.
Many specialty mental health clinics do not even accept neurodiverse patients, according to Jonathan Cantor, researcher at The RAND Corporation.
A study published in Health Affairs, carried out by Cantor and co-authors, determined that about 66% of specialty mental health clinics provided behavioral health care for any child but only 43% provided care for children with autism.
Even fewer had physicians trained in providing care for children with autism or a specialized treatment program for children with autism.
“There’s just not enough providers with the training necessary to provide care for this population,” Cantor told Behavioral Health Business. “There’s a shortage of providers for both autism spectrum disorder and for mental health care in general. It’s really hard to actually be able to find a provider who’s going to be able to have the necessary training to be able to provide the care that’s needed.”
Other reasons for the lack of mental health providers prepared to treat people with neurodiversities include insufficient education on treating neurodiverse people, according to Riha.
“I myself am a clinical counselor by training and I can tell you from my own experience that we get maybe one lecture, a couple of lectures if we’re lucky, on working with people with IDD and autism in the context of delivering mental health treatment,” Riha said.
One provider taking steps to correct the shortage of clinicians trained to treat mental disorders in people with neurodiversities is Catalight. The nonprofit organization provides evidence-based treatment for people with intellectual and developmental disabilities.
The training program, set to launch in 2024, will be available to both clinicians within and without the Catalight system.
The training, which will include certification for the clinician, will offer clinicians ideas on how to modify their current approach to treating anxiety and depression. Hence, it is suitable for patients with autism or IDD.
Until the program launches, Catalight will continue coordinating care with clinicians outside its program.
“We just felt like that wasn’t enough,” Doreen Samelson, Chief Clinical Officer of Catalight, told Behavioral Health Business. “We’ve got to do more. We realized that there are a lot of clinicians outside of Catalight who need to be trained too. So that’s why we are going in this direction with our training program.”
Even after finding a provider who offers mental health care to neurodivergent people, the question of payment remains.
For neurodiverse people with commercial insurance, getting mental health treatment is no different than it is for neurotypical people. Accessing mental health care can be complicated for people with Medicaid or an IDD waiver.
“I think the real question is not would they benefit from the services, the real question is, how are we going to more seamlessly pay for those services and support them in a way that’s meaningful for [patients],” DiStefano said.
Payers are less likely to make deals with hundreds of smaller providers who offer similar or adjacent services, DiStefano said. Consolidating care through mergers and acquisitions may be one way to deal with the problem.
“We’re already seeing that in our firm,” she said. “We have a pipeline of at least a dozen different partners that would potentially come together to form more integrated agencies or organizations.”
DiStefano encourages IDD providers to offer comprehensive care, including mental health care, to their patients. Diversifying not only provides more complete care for patients but also prevents providers from having all their “revenue eggs in one basket.”
“I think the path forward for success is really about braiding those different funding sources, intentionally pursuing them and making sure you’re clinically and operationally ready to deliver them,” DiStefano said.