Should You Share Your Child's Asperger Syndrome or Autism Diagnosis?
When I was a classroom teacher, several of my students had diagnoses of Asperger Syndrome. They were all bright and talented students and it was easy to make reasonable accommodations to play to their individual strengths. Less clear was how to help them navigate the complex social world of high school peer relationships--a difficult task even for neurotypical teens.
What if sharing an Asperger's Syndrome or Autism diagnosis could stop much of the teasing and help a child find allies?
Barbara Luborsky, a pediatric occupational therapist and founder of Way to Grow, collaborated on a presentation to help families do just that.
"Because kids with Asperger are often perceived as odd, peers usually are at a loss to know how to interact with them," Luborsky explains, "So sharing clear and age appropriate information about the diagnosis, what is means and how specifically it is affecting the child, will “open the door” for classmates to feel comfortable interacting."
Embracing the Identity
Jason Shrand is one young man with Asperger Syndrome who chose to share information about his diagnosis. Currently, Jason is "enjoying the full college experience" at Northeastern University. Like other undergraduates, his social life, including friends, a girlfriend, and his own apartment over the summer, is a big part of that experience. Jason says that life could not be better and he attribute his happiness to disclosing his Asperger Syndrome in high school
"That's what allowed me to embrace it as a part of my identity. Disclosure to my peers was the final step in changing my thought process from 'This is something I should be ashamed of,' to 'Hey, this is something I should be proud of!' Once I accepted my diagnosis, I was able really able to put effort into self-improvement."
During elementary school, Jason's mother, Carol shared the diagnosis with teachers and, on a case by case basis, with other parents. Jason was "not yet fully aware of being different from other kids. And [disclosure] wasn't essential because he was in a supportive environment in which teachers went out their way to help highlight his strengths so that his peers could see beyond the tics and quirks and appreciate his intelligence, piano playing, origami making talents! "
As Jason and his peers became more aware of these differences, Carol shared the book, "Look Me in the Eyes," with Jason. Then, without telling his parents, Jason made a video to share with his classmates. Jason Shrand describes the decision as "more of a slow realization than a sudden change of heart."
Dr. Shrand, Jason's father, an Instructor of Psychiatry at Harvard Medical School, and the Medical Director of CASTLE (Clean and Sober Teens Living Empowered), fully supported his son's decision. He points to a study that suggests that the stigma comes more from the behaviors typical with Asperger Sundrome, rather than from sharing the diagnosis itself. "De-stigmatizing, de-mystifying, and de-pathologizing things like Asperger Syndrome requires being open and honest," explains Dr. Shrand. "Carol [his wife] and I model this for our kids, as it reinforces their sense of self-worth and decreases any sense of shame: there is nothing to hide!"
Tara Kennedy-Kline, mother of Alex, a 5th grade boy who is diagnosed with Asperger Syndrome, also found that her son's behaviors presented more of a social challenge for him than his actual diagnosis. After Alex had a "meltdown" in the classroom, his teacher suggested sharing the diagnosis with the class. Although Alex and his family were skeptical, they agreed. After the teacher spoke with the class, several other students were brave enough to share their own diagnoses with Alex.
Alex says, "The thing is, at first they changed the way they treated me. Some kids treated me better and others made it a reason to make fun of me. But most kids stuck up for me. Now the kids are used to the things I say and do and most kids treat me like a normal kid."
Kennedy-Kline recommends "All Cats have Asperger Syndrome," a book which gave Alex "a pretty cool perspective on why he does some of the 'aspergy' things he does..."
As awareness of Autism and Asperger Syndrome increases, more families are grappling with the decision of whether or not to share a diagnosis with classmates and other families.