Neurodiversity - when do I tell my child about their diagnosis?

By Madeline Sibbing, Educational & Developmental Psychologist

When a child receives a diagnosis of neurodiversity such as Autism or ADHD families are left with a multitude of questions. Questions about their child, their family, the present and their future. As psychologists we are privileged to support families in sorting through these questions and finding answers, and one of the most common and pervasive questions I am asked is still:

“When is the right time to tell my child about their diagnosis?”

And you know that we psychologists love to give vague answers don’t you?! It’s always “well it depends on the individual”…….yada yada yada!

Why is this question so important now?

I have worked with countless families over the years who have gone through the process of obtaining a diagnosis. It’s a huge journey that brings up varied and often conflicting emotions. In amongst all that, parents just want the best for their child. So after processing their own emotional reactions the time comes to consider their child’s response and what this will mean for them.

In the past, this may have meant “holding off” on sharing the diagnosis with their child. People feared the stigma associated with a diagnosis, being treated poorly by others and the negative feelings their child might experience. A sense of feeling “less than” or “challenged”.

However the tides have turned – thanks to increased awareness of neurodiversity, of how common it is, and how neurodiversity is not just range of ‘problem’ behaviours but can provide many strengths and talents, attitudes are shifting.

So what does the research tell us?

As psychologists we’re trained to be scientist-practitioners, so before I get to my opinion, let me tell you what research shows.

Numerous studies of autistic people tell us that learning about their diagnosis earlier in life leads to greater ratings of wellbeing and quality of life.

Pretty important right?

For example, a study of teenagers whose parents voluntarily shared their autism diagnosis with them described both autism and themselves more positively than adolescents whose parents did not do so (Riccio, Kapp & Gillespie-Lynch, 2020).

Another study revealed that autistic university students who found out at a younger age felt more empowered and able to access supports than those who found out when older (Oredipe, Kofner, Riccio, Cage, Vincent, Kapp, Dwyer & Gillespie-Lunch, 2023). Autistic students surveyed indicated people should be told about their autism as soon as possible and that children should not have to wait until they are adults to learn about their neurodiversity.

Plus, research is abundantly clear that early intervention for neurodiversity leads to greater improvements and skill development (Corsello, 2005).

And although there is some evidence that people have more positive emotions about diagnosis when finding out if they’re older, the research is pretty clear: the younger a person is the better quality of life, wellbeing and more empowered and open to support they can be.

Now to my opinion……………drumroll………………

My personal and professional opinion is that clients cope better with their diagnosis when they find out early in life.

When is this, you ask?

WHEN IT IS RIGHT FOR THE CHILD. (Typical psychologist answer, right?!)

This will depend on a number of factors, such as how old the child was when diagnosed and how many questions they are developing about themselves.

Some families may choose to share the diagnosis as soon as it is established. This is often in response to children who are curious about the assessment process and want to know the outcome.

On the other hand, some families prefer to wait until a child begins to notice differences.

For example, a child in Year One may begin to notice that they attend therapy each week and their friends don’t. They may notice that they use the sensory toolbox and headphones more than others in the class. They might start to recognise that the noise of PE class is intolerable for them, but the rest of their peers cope fine.

A child in Year Four may notice that they continue experiencing friendship conflicts because of miscommunications. They may have been told by their friends that they talk “way too much” about space and their friends are tired of it.

When either of those children start to notice and express these concerns, it might be a good time to share their diagnosis.

Basically - if your child seems cognitively ready to understand themselves better, it is probably a good time to have the discussion with them. Often this is not until primary school age, but of course every child is different! Parents will need to gauge when they feel it is right for their child.

What next?

The next step of initiating this frank, open discussion with your child can indeed be daunting!

So stay tuned for our next blog article that will provide tips on how to bring up this topic and share it with your child in a sensitive, supportive and positive way.

In the meantime, observe your child and talk with any professionals or other caregivers in their life if you think this might be the right time to share their diagnosis. You don’t have to do this alone!

References (boring but important!)

Corsello, Christina M. PhD. Early Intervention in Autism. Infants & Young Children 18(2):p 74-85, April 2005.

Oredipe, T., Kofner, B., Riccio, A., Cage, E., Vincent, J., Kapp, S. K., Dwyer, P., & Gillespie-Lynch, K. (2023). Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students. Autism, 27(1), 200–212. https://doi.org/10.1177/13623613221086700

Riccio, A., Kapp, S. K., Jordan, A., Dorelien, A. M., & Gillespie-Lynch, K. (2021). How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism? Autism, 25(2), 374-388. https://doi.org/10.1177/1362361320958214