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Help Needed: Finding Health Care Providers for Patients with Autism

The parents thought they had hit the jackpot. They found a mental health clinic that was in their town and was covered by their insurance plan. More than that, the clinic was associated with a psychiatric medical center in a nearby city. Now their child could get much-needed help in controlling behavior problems.

But when the parents showed up at the clinic, they found out that the center is severely understaffed, and they can’t treat their child. The best they could do was put the kid on a waiting list and hope that a health care provider would become available anytime soon.

It would take almost two years for the parents to find a nurse and a psychologist that could treat their kid.

This story might sound like an Oscar-winning movie, but it is, in fact, a grim reality. Most parents of children with autism have to wait for therapy because there’s a shortage of specialists. Here’s the paradox: medical centers have the funding and space to treat patients with autism, but they can’t find the staff to work with them.

Barriers to Healthcare in Autism

According to the Centers for Disease Control and Prevention, autism now affects one in 68 children, leading many to declare autism, a public health crisis.

Back in 2014, shortly after the CDC report was released, the government responded by announcing that Medicaid and EPSDT should cover the treatments necessary for children and young adults with autism. That was a great victory for families with autistic children and autism advocates alike. But, the struggle is not over yet.

Although more and more families and individuals now have access to treatment, finding health care providers trained in caring for children with autism is still extremely difficult. Here’s an example. According to, there are around 7,000 young people that have been diagnosed with autism in Nevada, but only 277 certified specialists to provide one-on-one therapy. The numbers are even more discouraging in Utah, where one in 54 children is diagnosed with Autism Spectrum Disorder. There are only 18 certified health care specialists in Utah County, but more than 4,000 children with autism qualified for Medicaid services.

Lack of Staff Means That Patients Have to Wait for Treatment

Caring for a child with autism requires a lot of dedication and special training. So, just because the government mandated private insurance companies to cover autism treatment, it doesn’t mean that these services are readily available for patients. Even after children receive a diagnosis, parents have to struggle for a long time before being able to access treatment. As a result, many families end up on waiting lists for years.

One of the main reasons patients have to wait so long to get access to treatment is the lack of qualified health care providers. According to a Brandeis study, cited by the Interactive Autism Network, about 14% of autism parents claimed that a health care provider didn’t know how to treat their children. A survey of 992 health care providers cited in the Kaiser Permanente Northern California found that more than 600 providers are frustrated with the lack of training programs in clinics or hospitals.

One explanation for the lack of qualified providers could be the rising popularity rates of autism spectrum disorder (ASD) over a short period. According to the CDC, autism rates increased from one to 150 in 2002 to one in 68 in 2014. It was almost impossible for health care providers to keep up with the demand.

Even though many states have tried to create more programs for training and licensing health care providers, such as nurses, psychologists, and psychiatrists, these programs take a lot of time to implement. And, the reality is that, in most states, the health care agenda has yet to catch up with the demand for autism services.

Equal Access to Treatment Should Become a Priority

While there are still numerous barriers to accessing autism treatments, things are getting better. Numerous states are investing in training programs for providers interested in offering autism treatment services. Additionally, waitlists for services aren’t that long anymore as more and more qualified staff enter the field.

But, in spite of all these victories, there’s still a long way to go before we can ensure everybody gets the treatment they need.