This is a post for parents and caregivers whose child recently received an Autism diagnosis and are navigating the question of how to explain to their child what it means. 

For parents who are not Autistic, it may feel like an especially daunting task to explain a diagnosis for an experience you have not had and may not fully understand. 

This post is all about navigating that initial conversation so that your child understands what a diagnosis means and understands that you are there to support them first and foremost. So let’s dive right in!

We alluded above to the potential challenges of an Allistic person trying to explain an experience they have not had. This concern is a great example of why it is so important to consider the framing of this discussion before jumping right in. 

The bottom line is that our job is not to explain what being Autistic is like, but rather to explain how a diagnosis helps people better understand their needs and what is likely to happen as a result of receiving an official diagnosis. 

The framing of the conversation can reflect that. An example of what such a framing might look like: “We spoke with the doctor you saw a few days ago and she let us know that you are Autistic. Autistic is a word we use to describe the way some people’s brains work. Lots of people are Autistic! You already know who you are, this word just helps us understand better.” 

Some examples of discussing potential changes can include:

• We can do a better job getting you what you need to be happy and healthy.

• We learned we need to do a better job of listening when you say the lights are bothering you.

• We are going to work with your school to make sure you are in a class that feels right for you.

• We are going to talk to Grandpa about telling you to make eye contact.

When you received news of your child’s diagnosis, it may have hit like a ton of bricks. Not only do you have to consider a wide variety of potential changes to your own life and resource needs, you have learned something new about your child that may come as a total surprise. 

It may then come as another surprise that your child’s reaction is somewhat muted or totally unconcerned. What gives? Shouldn’t this be a big deal to them too? Don’t they understand?

The answer is that they do understand and it’s probably not a big deal, and it may help to try to think about it from their perspective. It’s like we said above: Autism is just a word we use to describe a wide umbrella of neurotypes. Your child already knows who they are, and they are just receiving that word as a potentially helpful descriptor or identity. 

They are not thinking that this changes everything that they knew about themselves. They are not thinking about all the resources they might need 10 years down the line. So don’t stress too much about the initial reaction, the important work is just getting started.

While merely receiving news of a diagnosis might not be a shocking moment for your child, one unfortunate reality of Autism is that sometimes Autistic people are mistreated solely on the basis of who they are. 

Some of the worst challenges Autistic people must face are due to the way they are treated by individuals or from an inability to access the same resources due to a lack of accommodation. 

For those of us who find ourselves in a role of supporting an Autistic person, it is especially important that we reinforce how fundamentally wrong such mistreatment is, and that the Autistic person or people we support deserve equal access and support when they need it. That they are not responsible for their own mistreatment. 

We start by expressing our ongoing support on day 1, and then we can make sure to repeat that message whenever it is needed.

Telling your child about their diagnosis can be one of many challenging moments early in the diagnosis process, but it can also be one of the most important steps you can take to show your child that you will always be there for them and see them as who they are. 

If you would like use to go more in depth on this topic or you have other burning questions related to the early days of a diagnosis then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and let us know what’s on your mind.