Telling people about a diagnosis
Some families are very open about talking about their child’s diagnosis, while others tend to tell people only on a “need to know” basis.
Please be mindful that people close to you might react to your child’s diagnosis in different ways — from family members who might not believe the diagnosis to your child’s school friends who totally accept them for who they are.
Especially in the early days following a child’s diagnosis, parents might not be exactly sure how they want to proceed with regards to sharing that information. It is very common to have these doubts and also for feelings to change over time.
However, we do feel that there are some key considerations that are relevant for all families:
Disclosing diagnosis to school and medical professionals
It’s important to let schools and medical/allied care professions know about any diagnosis (ASD and/or others) so that your child can get the support that they deserve and are entitled to receive. You and your child have the right for that information to be treated confidentially.
A cautionary note regarding social media
Being open and honest about having a child with autism can often lead to greater understanding and support. In fact, there are some wonderful examples of parent bloggers in our resource section. However, parents should think carefully about what specifics they share about their child more broadly on social media and the impact that words can have on how a child might see themselves. A parent’s desire to be open and honest doesn’t outweigh a child’s right to keep private intimate details of their struggles or most vulnerable moments.
Telling your child that they are on the autism spectrum
It can be very valuable for children to have a clearer understanding of themselves – why some things might be very difficult for them, why other things come so easily – and to also learn that they are part of a much larger community of people on the autism spectrum. In fact, many autistic adults and professionals who work with autism families will attest to the immense value of having that knowledge.
The “how” and the “when” are the details that parents must work out for themselves. Some might start talking about autism with their child almost immediately after their child’s diagnosis and answer questions as they arise.
Others might choose to have a “disclosure discussion” once their child starts noticing differences. Or another approach altogether.
Getting counsel from the professionals and considering the perspectives of autistic teens and adults might help inform your decision making process. There are some useful resources for your consideration at the bottom of this page.
“What Are You Doing? – a film about autism” – Autism Awareness Australia
Sharing the Diagnosis of ASD – AMAZE
How To Talk To Your Child About ASD – The Arlington (Virginia) Public Schools
Explaining The Diagnosis To A Child With Autism – By Pat Crissey
Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome -Indiana Resource Center for Autism
A Hair Dryer Kid In A Toaster Brained World – MOM- Not Otherwise Specified
Should You Tell Your Child About Their Diagnosis – Stephen Shore