Should You Share Your Child's Asperger Syndrome or Autism Diagnosis?
Proceed with Caution
Dr. Fran Walfish, child and family psychotherapist author of The Self-Aware Parent, says that although they consider the idea, most of her patients still choose not to share a child's diagnosis. She explains, "There still is negative stigma associated with the label. Equally powerful is ... the fact that the parent often has not yet come to terms with accepting the child's diagnosis. So, there is shame, there is embarrassment, there is hope the child will outgrow it."
Although Dr. Walfish does not advise keeping the diagnosis a secret, she advises caution in sharing this information with the parents in your school community. "Evaluate who you want to let in to your circle of trusted friends...let trusted new people trickle in. Create a safe harbor for the child--a community of non-judgmental and supportive people who will relate to the child as equal. This can only be done slowly and methodically, with personal care."
Miriah and John White, founders of Mighty Oak Family Consultants, took a similar approach with their 5 1/2 year old son, Aiden*, who has been diagnosed as on the Autism spectrum.
Although they shared the diagnosis with Aiden's preschool teacher when he entered the school at age 3, they did not discuss the diagnosis with other parents until over a year later. Once they did, Miriah White says, "Telling others about our Aiden's diagnosis has been overwhelmingly positive. Most people are pretty empathetic, and it opens up dialogue about the autism spectrum disorder and the importance of early intervention in treating it."
Still, White urges caution "Weigh your options carefully and go with your gut instincts. If you feel that you shouldn't tell acquaintances about your child's diagnosis, then don't do it. You can always change your mind later. Of course, once you've told someone about a diagnosis, you can't take the information back!"
If you and your child are considering sharing a diagnosis with classmates and other parents, consider:
- What is the child's awareness of and relationship with the diagnosis?
- What are the teacher's classroom management abilities and is she willing and able to provide support?
- How are the students monitored during lunch, recess, and other times they are not in the classroom?
- What is your advocacy temperament? Will you be able to follow through and ensure that the disclosure is a positive experience for your child?
- If you have shared information with other members of the community outside of the education professionals, how have they reacted?
* A psuedonym