How do I tell my child he's autistic? Feminist Advice Friday
A reader hates how stigmatized autism is, and doesn't want to pass the stigma onto her child.
A reader asks…
Thank you for your work in educating that neurodiversity should not be used as a scapegoat for abuse. I had bought into that because I needed an explanation for my abusive husband’s behavior, and I didn’t want to face to it being abuse or to it being intentional. It was more comforting to attribute it to “lack of skills.”
Now I have a 10-year-old child I adore with an autism diagnosis, and I struggle with how to tell him that he is autistic. I hate that it is called a “disorder.” I hate that it is framed in terms of “deficits.” I hate that even the most informed sites call it being “different” or thinking “different” from others, making it sound different from being “normal,” instead of simply referring to it as a type of brain, or a way of thinking and perceiving the world.
1) How do I tell my child that he is autistic? What do I say? How do I explain what it is? How do I not present it mostly in terms of challenges? How do I make him feel good about it? 2). How do I put aside the trauma and the irrational (and bigoted) association that I have with his father’s abuse? I want to present autism as a celebration of who he is (because he’s awesome!), but I also have so much baggage, however irrational. I would love a post about this, if possible.
My answer
Before you talk to your son, you need to address your own baggage. Because if you don’t, you are going to inadvertently signal that autism is something bad. I hear a lot of desperation for him to view autism as something positive. But autism just…is. He doesn’t have to have a positive view of autism, or to see it as all good. He can be neutral and that’s fine. He can be negative, and that’s fine, too, because it’s his brain and his life, and he is entitled to his own perceptions.
Autism is nothing more than a variation of normal. In a society that caters to only one sort of person, it can be disabling, but this is a cultural problem rather than an individual one.
So let’s start with your own history with autism:
We live in a patriarchal society that will devise any strategy it can to defend abusive men. It’s no longer socially acceptable to tell women they just have to live with abuse, so instead we turn to other strategies to gaslight them.
Sexist men and their defenders are increasingly weaponizing the language of social justice. So a man will mistreat his partner, and someone will armchair diagnose him as autistic, then accuse the woman of being ableist for demanding better. Suddenly she’s arguing that she’s not oppressing him, which is never a good position to be in.
Or sometimes, it’s an #actuallyautistic man who’s asserting that his autism means he just can’t be held accountable. Autistic men are not immune to sexist conditioning, and autism does not entitle a person to exploit their partner, nor to refuse to give anything in the relationship. What you dealt with was not autism, but abuse. You must decouple autism from abuse in your mind, because the belief that autistic people are abusive is the real ableism.
Autistic people can be abusive. Just as women can be abusive, and people with blonde hair can be abusive. We know that being a woman or a blonde does not cause abuse; you need to fully understand that being autistic does not cause abuse either.
I write more about this topic in these articles:
On to talking to your child about autism. If I could sum up my advice as simply as possible, it would be this: You must talk to him soon, frequently, honestly, neutrally, and with increasing complexity.
It worries me that you’re so anxious about telling him he’s autistic. This is not something that requires a big reveal or a scary conversation. The odds are good he already suspects there’s something different about him, and that he’s gone through some sort of testing and evaluation to confirm this belief. Most importantly, it is his brain and he has a right to information about it.
I can tell you that, overwhelmingly, people who find out they are autistic report relief. Things make more sense to them. They have a new way to understand their identity. It often feels like a gift, like being given a map to better understand their brain.
Importantly, this conversation should be a two-way discussion, not a lecture.
So you might try something like this: “We’ve recently learned that you’re autistic. Have you heard of autism? Do you have any thoughts about it?”
And then build your discussion around what he already knows and thinks. He has almost certainly heard of autism, and might even suspect he is autistic. Kids are smarter than we give them credit for.
Once you have an understanding of his views, you can begin answering questions. Some strategies for doing this include:
Focus on autism as a neurotype. “This means your brain works in this way…”
Talk about his autistic traits in the context of autism. Don’t just rattle off a list of diagnostic criteria. “The way you’re interested in trains is a special interest. Lots of autistic people have them.”
Don’t tell him what to think. Share what you know, and ask what he thinks.
Have many, many conversations about autism. Bring it up in conversation. Let him take the lead, though, and never force him to talk about it.
You mention that you don’t want him to perceive himself as different or abnormal. You don’t need to address this in your first conversation, but you do have to address ableism, because he must be prepared to advocate for himself. He must know that the problem is a societal one, and he is not alone. Some language you might use includes:
“Autistic people have different brains from neurotypical people. Neurotypical people are more common, and have set the world up for themselves. This means a lot of people expect autistic people to act typical, but they don’t have to.” Then give some examples—eye contact, sensory overload, etc.
“Some people treat autistic people differently, and worse. This is called discrimination, and is like other forms of discrimination such as racism and sexism. It is wrong. And like other discrimination, it has nothing to do with you. But you may have to learn to advocate for yourself.”
As his understanding of autism unfolds, here are some things you can do to support him:
Always follow his lead. Do not try to impose your views of autism on him.
Respect his privacy. He, not you, gets to decide when to tell people he is autistic.
Advocate for the accommodations he needs. These are not special privileges, but basic rights. Include him in these discussions, and invite him to share his needs.
Adjust your expectations. Ask whether something you expect him to do is truly necessary (like, for example, taking medication he needs to be healthy) or merely a cultural expectation (such as making eye contact or having the sort of friendships neurotypical people have).
Learn as much as you can, from as many sources as possible.
Expose him to autistic literature and art, and find opportunities for him to socialize with other autistic people.
Encourage him to set treatment and support goals, rather than arbitrarily imposing your own goals.
Make autism a normal part of daily discussion, not a special topic reserved for only serious inquiry.
Manage problems as they arise, rather than assuming autism will necessarily create problems.
Allow him time and space to pursue his special interests, to get the sensory input (or lack of input) he needs, and to wind down. Many autistic people need significant time alone to decompress—and often, screen time.
Be mindful of the importance of routine. Chaos is very dysregulating to autistic people, yet many of us have trouble establishing healthy routines. Help him build a routine that works for his needs, then honor it. Do not needlessly disrupt his routine, or treat him as unreasonable when he needs his routine to be followed.
Perhaps most importantly, remember that this is his brain, and he is entitled to information about it. Please do not withhold his diagnosis from him any longer. It only alienates him. Rest assured, he has already seen the ways in which he is different. Right now he may blame this on personal shortcomings. Autism offers a more positive lens through which to view his differences.
Readers, do you have any tips for her?
I like finding video game analogies like autism is like you're an Xbox and everyone else is a playstation; sometimes y'all can do the same things but that doesn't mean you are running the same way. Or like apple/android etc
I'm so glad you wrote about this -- my son (8) was diagnosed with ADHD, and his pediatrician (who diagnosed him) told me not to tell him his diagnosis, and to refer to his medication as "vitamins". My son is a bright kid, he obviously notices that he gets special "vitamins" in the mornings while his little sister doesn't. I'm glad to read this post and see that the approach I ended up taking with him is validated. I am also ADHD, but unfortunately was not diagnosed until after my son was, at age 36. I can see so many ways that acknowledgement and treatment of my differences would have been helpful to me, instead of beating myself up for literal decades over what I thought were moral failings.