Talking 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, 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 professionals know about any diagnosis (autism 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. However, parents should think carefully about what specifics they share about their child more broadly on social media and how words can affect how a child sees themselves. A parent’s desire to be open and honest doesn’t outweigh a child’s right to keep intimate details of their struggles or most vulnerable moments private.

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 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.