Diagnose and Adios? Autism Families Deserve Better
A family’s need for help starts, not ends, on the day of an autism diagnosis.
For families who live 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, after their pediatrician has suggested an autism evaluation. 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 the day of the appointment 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 for parents while children are whisked away to another room for testing. At the end of the appointment, parents are then told whether or not 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.’ Let’s unpack what’s happened and why. What has really been learned, what can be learned? How best can families benefit from an autism diagnostic visit? It shouldn’t be ‘diagnose and adios’, instead, the diagnostic visits should be the beginning not the end of help from autism experts.
Silos: Not Just for Grain
One thing not apparent to parents is that the world of autism diagnosis and care is very silo-ed. In academia or policy-making, ‘silos’ referred 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—be it homeopathy or FDA-approved drugs often know little about behavioral, educational, or other psychotherapeutic treatments for autism.
How can we create better-integrated on-going care for families living with autism? The first step is to acknowledge that autism, for almost all diagnosed with it in childhood, it will be a chronic condition. Treatments continue for almost all into young adulthood—whether it still involves improving communication and daily living skills—or it involves picking a college with a learning assistance program that can address the social and time management problems so many bright young people with autism continue to face. Nevertheless, our autism community lacks resources for continuity of care: The concept of a ‘medical home’ for children with chronic illness like diabetes or cystic fibrosis are well-established. Children who are deaf or blind can become part of a community of others who are similarly affected, and/or access a range of services well-specified by the Americans with Disabilities Act.
We Need Continuity of Care for Families Living with Autism
What should a ‘medical home’ or continuity of care for autism look like? Let’s start with that first diagnostic visit. First, parents need a chance to state their main concerns about their child—and for those to form the priorities for that child’s early intervention: The biggest concerns may be that the child doesn’t talk and doesn’t make eye contact, but also could be that he doesn’t respond to his name, runs away in big open spaces, doesn’t eat or sleep much, or tantrums so much parents are afraid of being evicted. These priorities all involve the need for early parent training, not just shunted to another waitlist, like for ABA—which may well start with ‘standards’ like following commands such as ‘touch your nose,’ or identifying colors, numbers and shapes. Such drills will not directly address those key parental concerns. In addition to a diagnosis, diagnosing doctors also should be able to give behavioral strategies on eating and sleeping—if those are chief concerns; and at best, provide additional 1:1 parent training where an expert interventionist demonstrates and coaches parents in skills like introducing a new food, or any other key parent concern.
‘Diagnoses and Adios’: Enough Time to Really See What’s Wrong?
Another significant concern with the ‘Diagnose and Adios’ model is that what the diagnostician has seen may not be indicative of the child’s best or even typical capabilities: Children with early global developmental delays, children who are slow-to-warm, especially anxious children, or very language delayed children may look quite autistic when whisked away for a assessment by an unfamiliar adult (or two or three or four) into an unfamiliar room. Most ‘gold standard’ methods for behaviorally diagnosing autism like the ADOS (Autism Diagnostic Observation Schedule) do not have scores to indicate whether a child’s lack of social engagement, or lack of response when given verbal directions might not be due to one of these other conditions instead. Many diagnostic appointments, run with an ‘evidence-based’ protocol, don’t allow time for parents to either voice their concerns, discuss how and why their child’s behavior during activities like the ADOS might not be representative, or even learn what aspects of the child’s behavior clinched the doctor’s determination that their child has autism.
After being given the diagnosis of autism, parents are often vectored to genetics for further tests like for Fragile-X syndrome (exceedingly unlikely), or to search for specific genes described in autism research papers. Parents may also be sent to a neurologist, even when there is no indication of physical disability or seizures. Both genetics and neurology examinations, are most always negative, and parents often do not understand that these further tests were virtually never expected to have changed any treatment planning, anyway.
Doctors Need to Be Mindful of the Pain that Comes from the Diagnosis
Finally, getting a diagnosis of autism is a negative and very impactful life event—up there on stress scales with getting a diagnosis of cancer, divorce, or facing any PTSD-causing situation. Reeling from the news that your child does have autism, you may not exactly ‘hear’ what it is you are supposed to do next when the doctor then tells you. So, a follow-up visit to discuss treatment services, and importantly, individualizing treatment priorities is almost always in order—and is seldom offered. At the time of diagnosis, most parents ask or want to ask the ‘crystal ball’ question: What will she be like when she grows up? The answer should be—keep coming back as she gets treatment and has a chance to respond—so we can monitor development, change up treatment, and start drawing a line from here to there—together.
Siegel, Bryna (2018). The Politics of Autism, New York: Oxford University Press.