*Please note: We use the word autistic at All Star, as this is the term preferred by the majority of the autistic community. The community feels that being autistic is part of their identity, and not something they can be separated from.
As a neurodivergent OT working in paediatric disability and early intervention, I get asked the questions of "Should we tell them?" and "When should we tell them?" all the time! Parents worry about their child feeling different, labelling them, or having them feel isolated - but I'm here to tell you that knowing you're autistic can actually alleviate (or at least mostly) all of those problems.
Another concern that parents often have is "what if my child uses their autism as an excuse?". This is a genuine concern, regardless of how icky you might feel for suggesting it! I won't go into this one though, Autistic Not Weird has a really in-depth answer which you can read here.
Wondering about ADHD? Much of this discussion will also give you answers to sharing an ADHD diagnosis with your child too!
Not wanting them to "feel different"
Surveys of the autistic community show that nearly 90% of autistic people knew they were different from an early age. At around the age of 8 or 9, the social interactions tend to become more complex with neurotypical peers, and often this is a time where children start to become more aware that things are more challenging for them.
If 90% of these children are feeling different from others already, my argument is that knowing they're autistic, and that they belong to a community of other autistic people, is more likely to make them feel connected and give them a sense of belonging. That was definitely my experience, and the experience of many other autistic advocates.
Avoiding the "label"
A lot of people tell me that they don't want their child to know they're autistic, because they don't want to give them a "label". Unfortunately, the world is going to give them a label regardless, and those labels are often even less helpful. Many autistic children are mislabeled as being naughty, antisocial, weird, disruptive, violent, oversensitive and so many other negative things. This negative mislabelling can also often contribute to a negative self-identity for the child (especially given they likely already feel different, and are looking for a reason behind their difference, these labels can become this "reason").
By giving them the label of their neurotype, you give them an accurate label, and one that allows for help and support instead. Giving them an accurate label is also more likely to give them a positive self-identity which can be informed by autistic culture.
Tell your child when you're both ready
Autism is a really big concept to talk about with a child, so it's important that you are both ready. As the adult, it's important that you've educated yourself enough to be able to answer their questions.
It's also important that you're emotionally ready to talk about it. Many families experience grief at some point during their diagnosis journey, so it's important that you are ready to speak positively about your child's brain, and the impact this will have on them.
Older children will also likely experience a stage of grief after a diagnosis, so it's important that caregivers have finished their own grieving. Only then can they hold a safe space for their child to express their feelings, without adding their own negative emotions to the situation. This grief likely comes from having heard the word "autistic" in a negative context (for example, as an insult on the playground), so they already have a socially-conditioned negative view of autism.
As a parent, having accurate and helpful knowledge of autistic brains and what a diagnosis means can help your child to process their grief more effectively, and therefore start moving towards a positive self-view that embraces or includes their autistic identity.
Tell your child before someone else does
You'd be surprised how many people are happy to talk about a child, in front of the child. Parents, teachers, education assistants, GPs, Paediatricians, and even allied health professionals can all be guilty of this (on behalf of allied health professionals I do apologise!). The last thing you want is for your child to hear such important information from someone else, particularly if that means you can't facilitate the conversation positively.
Ok, so now I'm assuming (and hoping!), that you'll tell your child. But how?!
Most families have two options - either they have to "break the news" because the word 'autistic' has never been used positively in their house, or it's something that is talked about all the time, so now it's about making it specific to them.
Regardless of whether you have to "break the news" or just need to specifically discuss it with your child, there's some steps I'd like you to consider before you have The Chat, and maybe even before you get the diagnosis.
Celebrate differences
First, celebrate and explore differences from an early age, as the norm in your household. Different brains, different bodies, skin tones, likes and dislikes, strengths and interests. These are all ways to celebrate differences, and to foster positivity in differences for your children.
Books like 'Bodies Are Cool' and 'The Brain Forest' are great for this. Emily Hammond/NeuroWild also has some great resources on Teachers Pay Teachers (including many illustrated resources), in particular one on 'Helping Your Kids Develop a Positive ND Identity' and another on 'Getting a Diagnosis'.
Know more!
Secondly, educate yourself so that you feel ready and empowered. Connect with autistic advocates, and do some research. I would suggest starting with some of these resources and books:
Start Here: a guide for parents of autistic kids by the Autistic Self Advocacy Network
What Every Autistic Girl Wishes Her Parents Knew by Autism Women's Network
Understanding the Autistic Mind by NeuroClastic (free to download here!)
The Onwards and Upwards Psychology and Reframing Autism websites have heaps of other resources, podcast recommendations and workshops!
Arming yourself with information from lived experience experts will help you to answer questions and talk positively with your child.
The Chat
When it comes to sharing the news of a diagnosis with your child, books like 'The Rainbow Brain' by Sandhya Menon (for autistic ADHDers) or illustrated resources like My Brain is Autistic from NeuroClastic, and NeuroWild's many resources can be helpful in giving you simpler words and phrases to use with your child.
Explaining your child's autistic identity in a way that is personalised to them is also an important factor. By educating yourself, you'll be able to see some of your child's strengths and interests and how they connect with the autistic identity. Use these examples to help them to understand themselves.
Show them autistic identity
Find positive role models that your child can relate to. This might be a celebrity, sportsperson, gamer, historical figure, TV character, humanitarian etc that is linked to their interests. Alternatively, find a positive role model in your community who can talk to your child and your family about being autistic, so your child can see that this diagnosis and experience exists for other people.
Build their self-advocacy
As your child absorbs all of this important information, and depending on how old they are, it might be time to start helping them to advocate for themselves too. Help them to figure out how they best learn, what environments and sensory inputs feel good for their body, their communication needs/preferences and how they best regulate.
Allied health professionals may be a good source for this, but you can also access lots of ideas and resources from autistic-led companies like NeuroWild, Yellow Ladybugs and Reframing Autism.
Overall, knowing about our identity, having the resources to advocate for our needs, and finding community in our neurokin is what actually makes being autistic in a neurotypical world easier*, in my opinion at least!
*that and having less disabling environments...but that's a whole other thing!
About the Author
Rachel is a late identified autistic ADHDer, the Director and lead Occupational Therapist at All Star Therapies. She is passionate about early intervention, and helping children to understand and know themselves, so they can find their community.
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