Why it’s hard to get services for children who have autism
April is Autism Acceptance Month, a time to learn, reflect and (I hope) act with and on behalf of the many people who have autism. Despite the increased number of people known to be living with autism, less wellknown is just how difficult it can be for them to access beneficial care.
Given the somewhat recent changes in the definition of what constitutes autism, an accepted description (from the American Academy of Child and Adolescent Psychiatry) states that autism is a condition that results from differences in the way that a brain develops. The manifestations of that difference can impact how a person interacts socially and how they behave. Some people with autism can have delays in speech development and some can have a degree of intellectual disability. Because of an increased focus on screening, many people/children with autism are diagnosed before they are 3 years old.
We have recognized that autism is a spectrum with some exhibiting readily identifiable features and others less so. Even though I have been practicing pediatrics for nearly 14 years, I’ve been surprised by my inability to recognize some of autism’s more subtle presentations. This is why screening is important and I make it a point (as is recommended by the American Academy of Pediatrics) to screen all children for autism.
It is also why I routinely send more children to a specialist (developmental pediatrician) than I would have had I not used a standardized screening tool. It should also be mentioned that it can be more difficult for certain children (those who have families of modest financial means, those who live in rural areas and/or those who
are Black or Latinx) to get diagnosed and evaluated by such specialists.
At the same time that the number of children diagnosed with autism has increased (as I have anecdotally witnessed in my own practice), there has also been an increase in the difficulty of obtaining beneficial care for patients with autism.
Given the increased prevalence of autism, much time and research has gone into determining how best to treat it. One of the most tested and used interventions is Applied Behavior Analysis (ABA) therapy in which therapists work (often individually) with patients to promote more socially normative behaviors. It has helped many (but not all) patients with autism reach more of their social potential.
A cornerstone of child development is that the earlier a deficit is identified and treatment is begun, the easier it is to intervene, improving the likelihood that the child reaches their full potential. Despite this knowledge, it has unfortunately been more difficult
to get ABA therapy now than in years past, leading some families and patients to wait months before receiving the care they need. In the past, a simple request/referral from a health care provider was all that was needed for a patient to get therapy. However, providers now often need to complete a multi-step process that sometimes requires prior authorization — something often required for rarely used, expensive or new interventions not covered by insurance. The associated paperwork can lead to delays, lapses in therapy and stress for families who are often already dealing with elevated stress levels at baseline. Additionally, children with autism often need speech, occupational and physical therapy. Each intervention has its special hoops through which providers and families must jump. The challenges facing patients with autism even exist when insurance coverage status and/ or the ability to pay has been eliminated (as in the case among military families whose health insurance
and therapies are all covered).
All states now have laws mandating insurance coverage of ABA therapy. However, laws are only as good as those who implement them. We must urge our lawmakers to pressure insurance companies to reduce barriers to needed treatment. Additionally, we should apply pressure directly on insurance companies to the same end. As noted above, delays in receiving care reduce the effectiveness of that very care.
So, as we commemorate and work to fully accept people who have autism, let us also make sure that we are increasing our ability to treat those who have it.