By Bryna Siegel, PhD
For families living in urban or suburban areas, most of the testing to determine whether their child might have autism usually takes place in a university or other specialized clinic. Parents often are waitlisted for weeks, even months, following a pediatrician referral. Meanwhile anxiety increases, especially as ‘Dr. Google’ constantly reminds parents that early intervention is going to be critical if their child does have autism.
As appointment day approaches, many parents are asked to fill out numerous questionnaires, or to participate in research in case their child is diagnosed with autism. On the day of the appointment, there can be more questionnaires while children are whisked away to another room for testing. At the end of the appointment, parents are then told whether their child has autism, promised a report, and directed to services such as those provided by ABA programs, schools, or other therapists and developmental service agencies. The only follow-up that is often recommended is to go on for more testing with a geneticist or neurologist.
I call this “Diagnose and Adios.” And it’s a broken system that shortchanges autism families. Initial diagnostic visits should be the beginning — not the end — of help from autism experts.
Silos: Not Just for Grain
Let’s unpack why the system abandons autism families and what we can do to change that. First, autism diagnosis and care is very siloed and fragmented. In academia or policy-making, silos refers to specialists who don’t think much outside their own box. Autism diagnosticians often do little autism treatment. ABA specialists often eschew special educators. Special educators use different criteria to “diagnose” “autistic-like learners” than doctors who use the standards of the American Psychiatric Association. Doctors who treat autism with medicines often know little about behavioral, educational, or other psychotherapeutic treatments for autism.
Second, our autism clinical community lacks resources to provide continuity of care. The concept of a “medical home” for patients with chronic illness like diabetes or cystic fibrosis are well-established. But for autism? This system has not yet developed, even though autism, for almost all diagnosed in childhood, will be a chronic, lifelong condition involving substantial challenges across many areas of functioning.
Start at the Very Beginning
Let’s start with improving the practical relevance of that first diagnostic visit. Parents need a chance to state their main concerns about their child, and for those to form priorities for early intervention. Pragmatic realities should be paramount. Whereas approaches like ABA (after you get off the waitlist) may start with standards like following receptive commands such as “touch your nose,” or identifying colors, numbers and shapes, the biggest concerns are often unaddressed. This may include that the child runs away in big open spaces, doesn’t eat or sleep much, or tantrums so much that parents are afraid of being evicted. These priorities involve the need for early parent training, not just getting on an ABA waitlist. Rather than saying “Adios,” diagnosticians should be equipped to give immediate behavioral guidance or better yet offer 1:1 parent training where an expert interventionist demonstrates and coaches parents on a skill like introducing a new food. Yet, the system is so siloed that families are instead shown the door.
Another significant concern with the diagnostic visit is validity. Children with early global developmental delays, or who are slow to warm, especially anxious, or very language delayed may present in ways that may not be indicative of their capabilities. Also, many diagnostic appointments don’t allow time for parents to voice their concerns, discuss how and why their child’s behavior might not be representative, or even learn what aspects of the child’s behavior clinched the doctor’s determination the child has autism.
Then, after being verbally given the diagnosis of autism, parents are often vectored to genetics for further tests, such as for Fragile-X (exceedingly unlikely), or specific genes described in autism research (also exceedingly unlikely). Parents may also be sent to a neurologist, even when there is no indication of physical disability or seizures. Both genetic and neurology examinations are most always negative, and parents often do not understand that these further tests were virtually never expected to alter treatment planning anyway.
Finally, getting a diagnosis of autism is often a dramatically stressful event, on the scales with getting a diagnosis of cancer or facing any PTSD-causing situation. Reeling from the news that your child has autism, you may not exactly hear what it is you are supposed to do next when the doctor tells you. But even though a follow-up visit to discuss treatment services, and importantly, individualizing treatment priorities, is almost always in order, it is seldom offered.
We Need Continuity of Care for Families Living with Autism
Why are we front-loading autism assessment? As children grow and develop over the years there is seldom clinical re-evaluation to help guide medical, behavioral and educational interventions. Worse, few clinicians are trained in, or feel capable of, treating adults with autism, particularly if they are severely impacted. Without a clinical home for autism, families justifiably feel abandoned by the system, left to fend for themselves.
We should work to create medical homes and continuity of care for autism in all of our communities. Our “Diagnose and Adios” approach to autism is outdated and a sort of systemic negligence. Families need to have places to keep coming back to monitor development, revise treatment plans and find an integrated team approach focused on practical needs, getting from diagnosis through adulthood — together.
Bryna Siegel, PhD, is the author of “The Politics of Autism” (Oxford University Press 2018). She is a former Professor of Child and Adolescent Psychiatry at University of California San Francisco, and currently serves as clinical director at Autism Center of Northern California.