Today I sat in a feedback session, giving news to a family that their child met the criteria for having an autism spectrum disorder. I took in their mixed sense of grief and relief, because in many ways they had already suspected this diagnosis. I went on to talk about the unique strengths of that particular child and how specific services would address his challenges. I have gone through this process now many times with many different families; however, with each family, I ask myself again “What’s in a diagnosis” for this particular child? For this particular family?

I am a pediatrician who works with children who have an autism spectrum disorder and their families. Our first contact is often one where the family describes the behavioral concerns that led them to seek an evaluation. The simpler part of what I do is to pull together these concerns and my testing results to provide a diagnosis. The more challenging and rewarding part is to walk with families through their journey of recognizing and building upon the unique strengths of their child as they advocate for him through a myriad of systems.

We often express the need to define a diagnosis for the purposes of initiating services. A diagnosis can also help families, educators, and community members appreciate the neuro-developmental basis for seemingly ‘negative’ and difficult behaviors. By explaining why certain behaviors happen, we can start to identify specific areas to work on with the child and family.

I bring up the strengths of that particular child, and emphasize the uniqueness of every child with an autism spectrum disorder. I acknowledge the spectrum, and how even the ‘strengths’ that I defined are through the lens of what should be ‘neuro-typical,’ rather than a true recognition and celebration of uniqueness. It is exactly this spectrum of diversity and the remarkable strengths of individuals with autism spectrum disorders that have brought about the neuro-diversity movement. The neuro-diversity movement, although controversial, celebrates that autism, as well as other developmental disabilities, are less about disorders/illnesses to be cured, than they are about different ways of being. This movement, however, is challenged because in its extreme form, it undermines the value of research and interventions aimed at curing autism and minimizes the problems and struggles that an individual with autism faces.

The neuro-diversity movement is only one aspect of how autism has perhaps catapulted change in policies and practice among several social systems, including education, employment, and healthcare. The broader reaching implications of these changes may then have an impact across all disabilities. Ultimately, the social changes initiated by a better understanding of autism spectrum disorders, may be leading those of us caring for individuals with disabilities down a path of better inclusion, more appropriate accommodations in education and employment, and comprehensive access to healthcare services.