My Son with Autism and the Ghastly Horrible, No Good Wretched Day at the
Doctor’s Office
When a child with autism spectrum disorder enters a doctor’s office, are they being
treated with the same care and attention as a child not on the spectrum?
In many cases, they experience a ghastly, no good wretched day. It can be frustrating
for families to spend the time and energy to get medical help for an ongoing issue, like
gastrointestinal problems, only to be told “it’s just behavioral and we can’t help.”
Contrary to what some in the medical profession might believe, these issues are real for
families. According to research from the University of California:
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55% of children with autism have a sleep disturbance
45% of children with autism have a gastrointestinal disturbance
10% to 60% of children with autism have epilepsy
70% of children with autism have a co-morbid psychiatric disorder such as an
anxiety disorder
(Statistics from Daniel Geschwind: Program in Neurogenetics, Department of Neurology, Center for Autism Research and
Treatment, Semel Institute, David Geffen School of Medicine, University of California)
Although there’s a statistical concurrence between many secondary conditions and
autism, the dangerous linear thinking in the medical community still exists. When a
doctor’s reflexive response is “it’s autism, therefore it’s behavioral and not a medical
issue,” they do a disservice to the child and his or her family. The family leaves feeling
frustrated and hopeless, and the patient is no better off.
Towards a Behavioral Medicine Approach
In contrast to the medical treatment that many children on the spectrum experience, a
behavioral medicine approach allows medical professionals to uncover the true causes
of disturbances and find solutions that work for families. The goal is to promote health in
order to produce good behavior and learning outcomes and promote behavior change to
produce health changes, not just sweep the possibility of a health diagnosis away simply
because ASD in involved.
By using an integrated knowledge from multiple sciences, we’re able to bring that
knowledge to bear on the health issues of those with autism spectrum disorder. The
techniques bridge behavioral and biomedical sciences in order to reach solutions that
help children and families cope.
The Case of Alex
Alex, a boy on the ASD spectrum, had uncontrolled emesis. His regular vomiting made it
difficult for him to be accepted by his peer group at school, and at home his family
dreaded mealtime and constant clean up. He was non-verbal, so he was unable to
report his discomfort.
After being informed of what was a behavior problem by the medical community, his
mother referred him to my clinical team and we used a “scatter plot” to identify the
commonalities in his emesis incidents. We took a computational behavioral medicine
approach and systematically excluded and included foods to identify what might be
causing the constant emesis.
Through a series of changes, we discovered that Alex wasn’t vomiting on purpose – as
had previously been suggested. He had a reaction to histamine-rich foods which were
then eliminated from his diet. When the offending foods were gone, his emesis
disappeared as well.
The Next Steps for the Medical Community
Alex is not alone – there are hundreds of children just like him. By adopting a
computational behavior medicine approach for children with ASD, the medical
community can start being a true ally to their patients and their families. The prevalence
rate of common issues like gastrointestinal disturbance, emesis, disruptions in
sleep/wake cycles and psychiatric disorders means that primary care physicians are
going to see more and more of this in their patient population. It only makes sense to
shift to an interdisciplinary approach.
Establishing clinical decision protocols for systematically examining the causes of
common presentations is essential. With protocols in place, physicians can be
empowered to assist families and discover the true causes of these disturbances.
Enlisting clinical expertise from providers like Pacific Child and Family Associates helps
families identify the right treatment plan for each individual. Better yet, they accept
insurance plans that help both financially and emotionally for the family, while giving
peace of mind in knowing that individuals and families are receiving the highest quality
protocols and dedicated care that those with ASD need.
Until those protocols are in place, families need to be proactive. Be prepared to hear that
a child’s issues are related to ASD, and not a medical condition. Fuel yourself with
questions about what could be the cause, and continue to be your child’s advocate.
Having a ghastly, horrible no good wretched day at the doctor doesn’t have to be the
reality for families dealing with ASD.