I remember how my son’s autism diagnosis was delivered. He was three years old. It wasn’t a surprise really, merely a confirmation of something that I expected and feared. He was already enrolled in speech and occupational therapy making very little progress. He saw a developmental specialist at age two and two and half who initially believed that he was not autistic but merely delayed with sensory issues. After we requested a more formal evaluation for autism, she referred us to the “autism specialist” in her division.
The diagnosis was “officially” given after four appointments with various “specialists” at a Children’s Hospital. Initially my husband and I met with a psychologist who took a detailed history. A week later we returned with our son, so the psychologist could directly observe and assess him. He mostly screamed. At our third appointment a trained speech therapist administered the Autism Diagnostic Observation Schedule (ADOS), one of the few standardized tools that help physicians and psychologists diagnose autism. Finally the fourth appointment we met with an “autism specialist” who summarized the results and confirmed his autism. We were offered follow up in a year with either the autism specialist or her nurse practitioner. We already had a firm plan for future therapy and education. All we needed was a physician to sign off on the state autism scholarship form so that we could receive funding for him to attend a specialized school. Fortunately, our health insurance paid for most of this diagnostic process, this bureaucratic, non-transparent, not especially helpful process.
By the time a child is three years old, he has had about 10 visits with his primary care doctor. The doctor likely knows the family and the child very well. If developmental screening revealed a delay or concern for autism (pediatricians generally screen for autism with the MCHAT at 18 and 24 months), the child has already been referred to early intervention and might be receiving additional private therapies. The primary care provider has received the results of at least some of these evaluations and visits. Depending on the state where the doctor practices, the early intervention team may have performed an ADOS and sent the result to the physician.
The American Academy of Pediatrics 2007 policy statement Identification and Evaluation of Children with Autism Spectrum Disorders states “pediatricians must be aware of local resources that can assist in making a definitive diagnosis of, and in managing, autism spectrum disorders,” but it stops short of saying that pediatricians are the doctors that can and should make that diagnosis. The waiting list to see a specialist can be over year depending on where the child lives.
Furthermore, many specialists do not make a diagnosis at the initial visit forcing the family to wait even longer. Even if a diagnosis is made, the specialist does not assume the care for the child the way an oncologist would for leukemia, a gastroenterologist would for Crohn’s disease, a psychiatrist would for bipolar disorder, a pulmonologist would for cystic fibrosis, an endocrinologist would for a new onset diabetes, you get the idea. The situation differs from that of almost every other chronic disorder, yet we know that the care of autistic children is just as complex and crucial as the other disorders mentioned. When no doctor steps up, mothers become frustrated warriors some advocating tirelessly for evidence based therapies, others work to green vaccines and cleanse diets while most do the daily mundane heroic acts of mothering a special needs child.
Primary care providers by default end up heading the autism team. Shouldn’t they make the diagnosis? Do they have the time? If we can make time for depression and complicated ADHD, we can fit an autism diagnosis into our day. Do primary care providers have the knowledge to make a diagnosis? Autism centers have become the “experts” in diagnosis which creates a catch 22 because these centers cannot meet demand. Despite this, they are not reaching out to empower primary care doctors to make the diagnosis nor do they accept the diagnosis given by a different ivory tower.
A recent study conducted by Vanderbilt University with the help of the Tennessee AAP Chapter demonstrated that after a two day training, local pediatricians felt comfortable making the diagnosis of autism and agreed with specialist diagnosis 90% of the time. Similar trainings are underway in Ohio. I completed this training and found it helpful. Ohio has such a back log of children who need a doctor to evaluate children with possible autism, they are trying to recruit general pediatricians to see children outside their own patient practice. This training should be online, standardized and offered by the national AAP as an Maintenance Of Certification activity and specialists should embrace it.
Denise A. Somsak is a pediatrician.