A review of: Golnik, A., Ireland, M., & Borowsky, I. (2009). Medical Homes for Children With Autism: A Physician Survey PEDIATRICS, 123 (3), 966-971 DOI: 10.1542/peds.2008-1321

I’m usually extremely political when talking about other disciplines (pediatricians, speech therapists, neurologists, etc) since I think all of these clinicians have an important role in the care of children with autism. But I wouldn’t be totally honest if I say that I’d never been frustrated with some pediatricians, specifically in regards to diagnostic issues. Too often I have seen pediatricians who had minimal understanding of developmental disorders keep parents from seeking much needed specialized assessments with the argument that “your child is fine; boys will be boys, etc” even in the face of blatant symptoms of ASD or other conditions.

In this very influential study, the authors conducted a survey of a national sample of pediatricians and family physicians regarding their self-perceived competency in autism and other developmental disorders. The study included 539 physicians (449 or 90% pediatricians).

Overall, the physicians felt significantly less competent to provide primary care services for children with autism, than for children with other neurodevelopmental or medical conditions. The physicians also reported significantly more desire for primary care training in autism than in other neurodevelopmental or medical condition.

Yet, when asked what barriers prevent better care for patients with autism, only 30% of the responders endorsed ‘lack of provider education about the disorder’. This compares to 60% endorsing “lack of coordination” and “lack of reimbursement.”

Therefore, it seems that there is a disconnect between a perceived limited competency, a perceived need for more primary care training in autism, but a limited acknowledgment of their own limited training as one of the obstacles to provide better care for children with autism.

The study also found that parents of children with autism had more limited trust and satisfaction with the primary care than did parents of children with other neurodevelopmental disorders. It is possible that parents can sense the perceived limited knowledge about autism and the realization than maybe the pediatrician may not be the most appropriate provider/coordinator of non-medical services for these children (specially in regards to diagnosis). I think that good pediatricians understand the need for a multidisciplinary approach to the assessment and treatment of children with autism, and understand that other specialists are much better prepared to conduct the comprehensive evaluations that are needed to reach the most accurate diagnosis.

However, in their defense, there is a lack of are limited clinical guidelines on how to approach the issue of diagnostic evaluations for autism among pediatricians. I hope that when these guidelines are fully developed, they instruct pediatricians to refer all children who had early signs of autism for a comprehensive diagnostic evaluation at specialized settings.

UPDATE: Please read the comments for discussion on clinical guidelines for pediatricians.

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5 Responses to How much does your pediatrician actually know about Autism?

  1. Cecilia says:

    Excellent article!!! Your review of this study is very timely in the context of new Autism Insurance Bills beeing discussed and approved in several states. One big concern that parents have is that several approved bills limit tratment prescription to psysicians or pediatricians, living psychologists out of the diagnosis-treatment process. Beeing a physician myself I have to admit that I have seen much more expertise in the field of autism among professionals of other disciplines, including psychologists. The American Academy of Pediatricians (AAP) did publish a document with guidelines for pediatricians on the early diagnosis and managemnt of autism in 2007. Unfortunately the guidelines were very limited, showing the limited expertise in autism among the pediatric community. Several prestige doctors, including Drs. Stanley Greenspan, Berry Brazelton, Margaret Bauman, Jose Cordero, Ricky Robinson, Rick Solomon and myself published a commentary to the AAP guidelines in the Pediatrics in 2008. This commentary emphasized a strong recommendation of using an interdisciplinary approach and developing treatment guidelines based on children’s individual differences instead of endorsing one intervention “fits all” approach for children with autism. Unfortunately I am not sure how aware are general pediatricians of this commentary article or if they will just follow the limited guidelines published in 2007. If the AAP decides to expand those guidelines hopefully they will invite the most prestige experts in the nation, with years of experience working with children with autism, to contribute to the new guidelines.

  2. Thank you Cecilia for your comment. The idea that diagnoses must come from a pediatrician for insurance purposes is utterly ridiculous. If this becomes the norm, I hope that pediatricians only provide the diagnosis after referring the child to obtain the correct evaluation. Something similar to what occurs in Neurology, in that good neurologists only provide a differential dementia diagnosis (Alzheimer’s vs. CVA vs. Tumor, vs, etc) after obtaining the results of a complete neuropsychological battery, etc.

    Thanks again for the comment.

  3. mamacate says:

    Thank you for posting this. We were dissuaded (“boys will be boys!”) for years from seeking help by our (former) pediatrician. Our current pediatrician doesn’t have any idea what do do with our son with AS. My concern about the clinical guidelines is that they seem to be designed to screen for language delays as the key sign of ASD. That’s true for most forms of Autism, but NOT for Asperger’s. In the way that a little knowledge is a dangerous thing, we have encountered may health care providers (including those in the psych world) who think that any kid with strong verbal skills cannot possibly be autistic. I hope that screening guidelines will encompass the whole spectrum of autism, and also go beyond toddler and preschool screening, since AS is frequently not really diagnosable until early school age.

  4. Anonymous says:

    At my son’s two-year-old well visit, I expressed concerns to the pediatrician about my son’s oddly sophisticated language skills (perfect articulation and huge vocabulary), and about the fact that he was switching his pronouns (calling himself you and calling others I). I had done some research, and discovered that this kind of stuff could be a red flag for autism. But the doctor, making the assumption that I was some kind of pushy mother expecting a perfect child, shamed me, saying, “Most two-year-olds don’t even use pronouns.” Meanwhile, my son was having a meltdown in the office. He screamed when the nurse tried to weigh and measure him, and he wouldn’t acknowledge the doctor’s presence. The doctor told me the behavior was “age appropriate.”

    The doctor was wrong. A year later my son was diagnosed with Asperger’s Syndrome. We missed out on twelve months of Early Intervention services, all because a pediatrician couldn’t be bothered to simply say, “If you have concerns about your child’s development, you might want to set up an evaluation with your county school district.” That’s all she needed to say. I don’t expect every pediatrician to be an autism expert, but I do expect every pediatrician to be up to speed on services available to families of children suspected of having a disability.

  5. Anonymous says:

    Cecilia is there any way to find your commentary to the guidelines in 2008? I would be intrigued to read them.

    ~JulieL

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