It is my strong belief that Autistic children need to be involved in and have a say* regarding when, how, and who gets told that they’re Autistic. For more information about my parenting philosophy, which has heavily influenced my perspective on this issue, please see this post.
Now, I understand that there are some situations where disclosure is necessary and an early-diagnosed child might not be able to be consulted fully about the issue. I’m not here to judge anyone for disclosures they felt were extremely necessary.
However, I also believe that children should be asked for input about their Autistic disclosures whenever possible.
In order to facilitate their participation in disclosure situations, discussions with a child about being Autistic should ideally start early, be age-appropriate, positive, and occur often – ongoing in the same way I believe sex education chats should be.
I believe children have the right to know how they’re different (they almost certainly already know they are different).
The Autistic disclosure issue can’t even be discussed with children if they don’t first understand the basics of Neurodiversity along with a bit about their own brain and its label or categorization and what that might mean for them.
For even very young children, toddlers on up, this can be as simple as explaining that everyone is different and that includes brains and how they work. Moving forward from that, when the child is familiar with that concept, it’s easy to explain how some differences have names in order to categorize and better understand other people who are different than we are.
Then, it flows naturally to talk about whatever labels/categories your child’s brain has been determined to most likely** be:
“Dr. [name] believes that your brain fits in the category of [Autistic, ADHD, dyslexic, etc].”
Simple. The information can continue to flow from there by answering the child’s questions and addressing issues through the lens of Neurodiversity.
Once a child knows that all brains are different and how their own brain has been categorized, it’s an easy hop over to the discussion about telling others how their brain differs from the majority.
I might say something like this, tailored for the child’s age:
“People tend to believe that most other people think in the same way they do. Because your brain works differently than most other people’s, you will be misunderstood more frequently. Sometimes it will be helpful to let people know how your brain works so that they’ll be more likely to correctly understand your words and actions.”
There’s a fine line moving on from here though. Being Autistic is not shameful or something that needs to be hidden, but it is very personal information about a person. It’s also a marginalized status in our society that has often-harmful biases, stigmas, misconceptions, and myths surrounding it.
I believe that Autistic children should be helped to understand that this is their information to share, or not, as they feel comfortable. Autistic children, like all children, need to learn to trust their instincts about people and situations, which includes not giving people all the information they’re asked for if they don’t feel comfortable doing so.
“Even when you’re being misunderstood, you don’t owe anyone information about your neurology/how your brain works – that’s personal information that you can choose to share, if you’re comfortable sharing, or not share if you aren’t comfortable sharing.”
Much like with sexual orientation, I don’t believe that Autistic people, including children, should be “outed” by others as Autistic without their explicit permission. Neither state of being is wrong or shameful, but having marginalized statuses in our society and being “outed” can sometimes place people in danger. Sometimes our minority status can put our lives in danger, and it certainly carries the risk of being bullied, harassed, or abused. (CW for those 4 links)
I recognize that there are times when disclosure needs to happen ASAP and there’s no time to talk about it ahead of time. I’m thinking of situations where someone is being threatened by an authority figure (especially one with a gun) for non-compliance and the information about the person being Autistic could potentially de-escalate the situation. Also, if someone will be caring for a young child, they might need access to that information, but very few people outside of carers and family members should need that kind of intimate information about a young child.
In most cases there should be time to talk about the situation and get feedback or permission before disclosing. Especially once the child is around 5-7 years old.
“[Name] and you had a bit of a misunderstanding/difficult time on/at specific day/event/etc. I think it would help them better understand what you were upset about/trying to communicate/etc if they knew you were Autistic. Do you think that would be a good idea?”
If your Autistic child thinks it would be a good idea, discuss further about whether they want to disclose or if they want you to. Do they want to be there when you disclose or not? Do they want you to be there when they disclose or not? When would they like to disclose?
If your child feels strongly about not disclosing to this person and you feel strongly about disclosing then please still respect their wishes. You can talk about the pros and cons, why you think it’s a good idea, etc; but this is their life and their private information that they should be able to choose whether to share or not.
It’s also helpful to talk about how to handle these types of situations in the future even if there isn’t a current disclosure you think would be beneficial. One of my children wants to be told before we disclose, but doesn’t really want to do it themself. They might change their mind someday and we’ll know because we’ll ask about it first, in private, every time.
Another discussion I’ve had with mine went a bit like this:
“I’m signing you up for [chosen activity] now. On the form there’s a place to put any neurodivergences, allergies, or learning difficulties. Would you like me to put on the form that you’re Autistic/ADHD/etc? Letting them know ahead of time could potentially help prevent mis-communications with the instructor.”
The response I got was affirmative and, having gotten permission, I listed my child’s neurodivergence(s) and sent in the form.
If you are an allistic (non-Autistic) parent who read this and now feels the need to justify to me why you didn’t involve your child in a disclosure, please don’t. I welcome your story if you truly want to hear my thoughts about it or if you want to otherwise engage in respectful dialogue.
If you feel upset or guilty about a previous disclosure decision after reading what I’ve written (which represents, as far as I know, just a few Autistic people’s perspective on this issue), then I invite you to deeply examine your feelings so that you can make decisions in the future that are more congruent with your children’s needs as well as with your own values and beliefs. This post itself sprung from a disclosure I should’ve waited and talked to my child about before making. Even though my hasty disclosure turned out fine in the end, it got me thinking more deeply about the issue.
Hopefully all of the disclosure decisions you’ve made in the past have been decisions that that you felt comfortable and confident making and that also respected your child as the valuable and self-aware person they are.
If not, then it’s never too late to re-examine things and move forward with a slightly different perspective in mind!
*My child(ren) who are vaguely mentioned in this post have read through it and given their approval, as with all my other posts that mention any of my children in passing.
**I have issues with diagnoses being based primarily on outward behavior in general, which I suspect is partially why some folks who are labeled “Autistic” as children end up “recovering from autism” as they get older.
Possibly Helpful Resources – teaching about Neurodiversity and Autism:
Neurodiversity Terms and Definitions by Nick Walker
What is Autism?, in Plain Language by Dani Alexis – An introduction to Autism written with a 7 year old in mind.
Talking to Your Autistic Child About Autism by Lei at Parenting Autistic Children With Love & Respect, has more informative links at the bottom.