Explaining Asperger’s Syndrome to Children
My son was diagnosed with Asperger’s shortly after his 6th birthday. He had been diagnosed with PDD-NOS, Sensory Processing Disorder, and Tourette Syndrome previously, so a new label was not shocking. It was the most devastating for me as a mom, however. Whether it was my own ignorance or optimism, I always assumed he would just ‘grow out of’ the issues he had been living with prior to then… the lack of social skills, the sensory-avoiding/sensory-seeking behaviors, the verbal and motor tics that caused people to stare.
I had heard of Asperger’s, and I accepted and embraced this new piece of my son (which, of course, was not new but now had a name). But suddenly the words seemed so… permanent. I spent the next couple of years immersing myself in understanding and sharing information about Asperger’s with family, friends, teachers and counselors. My son continued to see his developmental-behavioral pediatricians, occupational therapists, and psychiatrists, who all helped me understand more and help my son with diet, exercise, and medication. I learned to embrace Asperger’s (and later, Autism Spectrum Disorders) and not just ‘accept’ it.
Soon after he turned 8, my husband and I discussed the idea of explaining some of these labels to our son. He was a bright kid. I know that he was hearing words like “Tourette’s” and “Asperger’s” during our visits to doctors and therapists. While it had never been an issue before, because of his age and apparent awareness, it seemed to me that he was showing more interest during the appointments and was surely beginning to wonder about these words he did not know. Armed with information and prepared for whatever backlash may come, I asked my son if he was curious about anything that was discussed at the day’s appointment. He asked one question… “What is Asperger’s?”
So I explained in the way I thought he would best understand, being a black-and-white thinking, fact-based kid. I left out emotion and platitudes and stuck with the diagnostic criteria and definitions. He asked a few questions (all as scientific and matter-of-factly as I expected), and I answered them the best I thought possible. Then I asked him if he was okay. He gave me an odd look and said, “Yeah. Why wouldn’t I be okay?” And that was it.
Since that day, more than five years ago, “having Asperger’s” or “being an Aspie” is part of his everyday identity. He is proud of who he is, proud of his accomplishments (learning to tie his shoes and ride a bike without training wheels at age 9 are still among the most major, most exciting milestones), and confident about his future. There have been plenty of emotional conversations since then, and he has had to cope with moments where he just wishes he didn’t always feel so differently than other people. There have been plenty of two-steps-forward, one-step-backward phases. But I believe his overall progression is because of, and in spite of, the labels and his acceptance of himself exactly as he is.
I have worked with tweens, teens, and young adults with Asperger’s and have known dozens of kids and adults on the spectrum. A frequent topic of discussion among the kids and parents is discussing diagnosis. Was our family’s experience typical? Not necessarily. Some kids do not remember a time they didn’t know. Others remember, often with frustration and anger, the day they found out they had a label that would follow them. Many recall the relief they felt when they finally had an explanation for why they always felt the way they did, why they felt different from others, why social interaction was so complicated for them. Finding out they were not alone and there were other people like them removed much of the alienation they had been feeling. There is no ‘typical’ reaction.
In my experience, there is a commonality among those who immediately or eventually embrace the label/diagnosis, as children or adults diagnosed later in life. Whether they self-identify as Asperger’s, Aspie, person with Autism Spectrum Disorder (ASD), autistic or otherwise, they seem much more content and confident than those who feel they are ‘less’ or are ashamed of the labels. Many parents also worry that their kids will become depressed or will be treated differently by people who know their child is on the autism spectrum. Unfortunately, there are organizations and people who act in the name of ASD who perpetuate the myth that autism is a terrible disease or something shameful and scary. It is easy to understand how anyone could see this and feel they are somehow inadequate or a burden.
Fortunately, there are many options available for parents wanting to teach their children (and their siblings) about Asperger’s or ASD. Websites and books approach diagnosis from a compassionate, empowering point of view or from a more fact-based, scientific approach. Therapists and pediatricians who are trained in ASD are excellent resources. Local support groups and social groups help families connect with others in the community. Depending on the child’s age, emotional development, and openness to learning more, there are many options for families seeking to understand and embrace Asperger’s and ASD.
About the Author
Tara O’Gorman, MSW, is an independent consultant and advocate for individuals and families living with Autism Spectrum Disorders (ASD) and provides consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is a proud mom to two sons, including an Asperger’s teenager.