Should I tell my child about their ASD diagnosis?

By Psychologist Emily Coen

Here in the clinic, we come across this question all the time. Should I tell my child about their diagnosis? When is the right time to tell my child? What resources should I have ready for them? 

Many parents feel anxious around informing their child of their ASD (Autism Spectrum Disorder) diagnosis, for fear that it will give them a label that might make the child feel different from others. Parents often go through a range of emotions when their child is given a diagnosis – grief, relief, acceptance, and many more. And of course each parent’s emotional experience is unique. You may fear that your child will not understand, that your child may become angry that they have a diagnosis, or you may fear that the child will view themselves differently overall. Our hope is that after your child receives their diagnosis, you as the parents are provided with the necessary support to be able to understand the diagnosis and to advocate for and assist your child, in the best way possible. 

Are there any benefits to sharing the ASD diagnosis with my child?

We think so! First and foremost, children need to be able to have an understanding of themselves and their needs so that over time, they can learn to advocate for themselves. 

Children with an autism spectrum diagnosis should also have the chance to understand, accept and appreciate their uniqueness, which can occur once they learn of their diagnosis. Quite often, we find that understanding the label also leads to a sense of belonging, and knowing that there are other children out there who are similar to them and really “get” them.

Particularly for older children who have better insight, knowledge of their ASD diagnosis can also build a stronger sense of self-esteem. This is because some young people are often already aware that they experience some areas of difficulty compared to many of their peers, such as socialising or tolerating change. Knowing about their diagnosis often provides them with an explanation of WHY they have these challenges. It can provide relief for them to know that it is the ASD and not simply a lack of effort that cause these challenges.

So when do I tell my child?

Unfortunately, there is no magic age when it is best to tell a child about their diagnosis. This will be completely dependent on the child.

As with all children, their personality, abilities and social awareness are important factors to consider when determining when a child is ready to learn about their diagnosis. In the clinic, I often hear questions such as “why do I come to see you?”, “why is it so hard for me to make friends?” and “why can’t I be like everyone else?” These questions are a good indication that your child is ready to learn about their diagnosis. 

For info about HOW to tell your child, read Part Two of Emily’s article in the next blog post!