Goldilocks and the Three Moms of Children with Autism

I had an interesting morning last month in my developmental pediatrics practice. I saw three 5-year-old boys back to back—each with a history of early diagnosis of autism—along with their mothers.

Each child had received intensive and appropriate early intervention services and was now transitioning from special preschool to kindergarten. Each child had had a good outcome, but continued to contend with some social and/or cognitive difficulties that could affect academic success. On paper, the three boys “looked” quite similar, with mild residual autistic features and relative cognitive and learning strengths. Yet in person, each was an individual.

But perhaps not as much of an individual as each of the moms. Each mother reacted quite differently to the exact same services prescribed for her son’s kindergarten transition: a self-contained special education class of 12 children with one teacher and one aide. That combination is what each of the boys’ school districts considered appropriate academic placement and services for children with autism and cognitive strengths (or their current learning and behavioral profiles).

The first mom came in with her son, requesting my help in obtaining a placement in a smaller class. She was mindful that in less lean economic times, many children with autism diagnoses had typically been assigned to classes of six children. She wanted her son to benefit from the more individualized attention a much smaller class could offer.

The second mom informed me that she had already met with a lawyer, knew her rights and wanted her son educated in the least restrictive environment. She reported that the lawyer wanted me to draft a letter recommending that the boy be moved from the class of 12 to a mainstreamed class. Was that what the lawyer wanted, or what she wanted? I asked.

Only the third parent was happy with the plan. She was nervous about the big transition, but overall pleased that the school district had not felt that her young son needed the smaller class. That meant to her that he was doing better than the segment of kids with autism who required such a small class. She was also relieved because her son would receive more attention than a mainstream class could offer.

That morning got me thinking hard about the role parental choice plays in educational planning for children with developmental disabilities. Different parents of children with similar educational needs, who have received similar therapeutic programs previously (and been pleased with them) and have similar educational options presently, can have strikingly different opinions about which educational settings are best for their children.

A flood of questions crossed my mind. What influences parental choice in such situations? Is it related to the parents’ perception of their children’s current or future needs? A sense of a particular child’s learning style? Parental optimism, pessimism or realism? Is it dependent on the impact of a lawyer’s point of view, or that of another parent they met at a parent support group or online?

I don’t know the answers to these questions. But I do know that significant latitude exists for parental choice (provided that the parent’s opinion is not inappropriate). What role does a doctor play in such decision making? The most important goal for a doctor is to provide objective information to help parents make informed choices. We make sure parents understand what the existing body of data says about their children’s current areas of delay and need, provide clarity about which educational strategies and interventions have proven useful in similar clinical scenarios and offer guidance on which settings and services are likely beneficial given the children’s learning styles at the time.

Even when parents have enough information to make informed choices, we still end up with a variety of viewpoints: a class size that’s too big for one family may be too small for another.

But by advocating for what it feels is right, each family will, we hope, find the right fit for the child, allowing him or her to thrive.

Unlike Goldilocks, I had an experience (with the three concerned moms) that did not cause me to run away into the forest and never return. Instead, my respect for parental choice has grown even more.

 

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Lisa Shulman, M.D.

Lisa Shulman, M.D.

Lisa Shulman, M.D., is a neurodevelopmental pediatrician, associate professor of Pediatrics, Einstein Director of Infant and Toddler Services and the RELATE program, Children's Evaluation and Rehabilitation Center.

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  • Lisa Jo Rudy October 5, 2012, 11:56 AM

    Nice piece. These differences in perspective are, of course, magnified hugely when the topic comes to therapies and educational settings for kids with more severe or complex forms of autism. Should a child be in an autism-only school? an ABA classroom? an inclusive setting? should they be receiving floortime, RDI, SonRise, pivotal, language based, occupational, physical, or some kind(s) of biomedical treatment? Is it ok to medicate?

    Every question becomes a potential battlefield.

  • The Doctor's Tablet Editors

    The Doctor's Tablet Editors October 5, 2012, 6:51 PM

    Lisa, Thanks for your thoughtful comment.