Don’t say your kid is autistic
Detail of The Rehearsal of the Ballet Onstage (1874) by Edgar Degas
Researchers studying autistic kids give secret autism tests to parents because it’s so easy to see that parents are autistic, but it’s such a huge pain to try to get the parents to understand. Think about it: no one benefits enough from telling you that you’re autistic that they are willing to try to convince you. But research becomes much more useful when we can label parents as autistic for studies even though parents would say it’s only their kid.
Having the label of autistic is not stigmatizing; pretending it’s just the kid is what’s stigmatizing. Because then the kid carries the label alone, while the parents pretend to be neurotypical. The hardest part of being autistic isn’t school. Or other kids. It’s having parents who don’t see their own autism, so they can’t adjust their empathy or their ability to self-regulate.
Think about your own parents. If you’ve gotten this far, you probably had a difficult childhood. You had parents who either enmeshed themselves with you and made you think it’s your job to take care of them. Of you had parents who made everything about themselves, and you had to be a high achiever to get any attention from your parents – as if your achievement shined on them.
If your parents had understood their own autism — what made them parent in extreme ways— then you would have felt more loved and supported during your childhood. And your adult life would have begun with fundamentally different footing.
You might think: that’s not nice to blame parents! But what’s really not nice is to act like it’s not the parents, because then there are all kinds of people talking about helping your kid when all your kid needs is you: You parenting in a routine and connected way.
You are not going to hear this from anyone else because they want you to like them. They want you to listen instead of shutting down. Lucky for you, I don’t care. I have more interest in just saying what’s true.
What I’m talking about is seeing clearly. Like this Degas painting. Did you know the Paris Opera was bankrupt so the ballerinas had to give sexual favors to attract donors? Now things make sense: those men in the corner for example. What I’m telling you is that everything is more interesting and more meaningful if you can really see. Including your own family.
So I’m talking about this topic live, on Tuesday, October 21 at 8pm Eastern*. If you want to argue with me, this will be a great time to do it. If you want to tell me there is no data for xxx, this will be a good time. We’ll also talk about what we can do to make childhood great for kids with autism. And what we need to do now, when autistic parents did not make childhood great for us.
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How do I deal with the fact that I secretly want my kid to be diagnosed as autistic so I can be too without having to seek an adult diagnosis? Adult diagnosis has endless waiting lists, no support attached, and I don’t think would bring any benefits. I already look to autistic blogs for advice and manage my life as if I am autistic. But I think it would be nice for someone to agree with me and for me to be able to excuse my parenting oddities to my kids so they realise I’m the problem, not them.
I love this question.
The short answer is that you don’t need a doctor to diagnose you because women who self-diagnose are just as accurate as doctors diagnosing women. But seriously, there is not an onslaught of women thinking they have autism when they don’t have it. That’s just not a thing.
For a longer answer, you should come to the discussion on Oct. 21. I can help you self-diagnose for your particular situation in a way that you feel confident about what you’re observing in yourself.
Penelope
Dear Penelope,
Thank you for replying to my comment.
I can’t afford your course – we’re a single income family with four kids. (I listened to your research (links) on staying home with kids and actioned it. See? I value your advice.)
But I guess, on reflection, I don’t need to understand myself better. I get my best advice from autistic blogs already. I read about happiness research and take action on it. (That’s why we have lots of kids. People seem surprised by my reasoning there. I am surprised that they are surprised. Maybe I need to have more confidence in my self-diagnosis.)
I need other people to understand me.
Not my husband. He’s met my mother, so had no trouble agreeing with my autism musings. He appreciates that I try to care about the things he cares about because I care about him even if I don’t care about them and often action the caring in the wrong way.
My friends? If you’re friends with me at this stage in life, either you have young kids too and are so desperate for friends you don’t care what I’m like, or you actually like me and don’t care what I’m like.
So it’s probably my kids. I don’t want to repeat the generational trauma of growing up with an undiagnosed autistic mother who didn’t realise she was the weird one. But I know I’m the weird one. So maybe they’ll be OK?
And maybe they’re autistic too, so will grok me anyway? We homeschool, so I don’t know. How would I tell what’s normal when I’m the weird one? But I’ve recently caught up on multiple years of your blog posts and have been trying to connect with them emotionally by sharing ideas and we all seem to find that more satisfactory than me trying to play “families” and making people cry because I somehow got it wrong.
So I guess I don’t need a diagnosis after all. I can just enjoy the life I have carefully curated for myself. Except I want to explain myself to people because I like explaining things and it’s easier than asking about people’s day. And I don’t feel like I can say I’m autistic without a diagnosis because it’s Against The Rules.
And there’s my diagnosis right there.
Susu
It costs $8 to join the discussion. If you sign up and cancel after the meeting the charge won’t repeat: https://penelopetrunk.substack.com/subscribe
If that is too expensive, and you want to join the discussion, email me and you can join for no charge.
Penelope
Mistake #1 I made: I confused this discussion with another course you talked about on another post. That’s the problem with catching up on five years of posts in five days :)
P.S. Your covid posts read really strangely five years later.
I don’t know if I can make the discussion because I live in England and Google tells me it will be at 1am. Is this right? I don’t understand time zones so I don’t have a good sense of whether this is in the right ballpark or not.
Wait, I thought of another question, which I hope you will also think is a good one. I know you like answering good questions.
Happiness research (I.e. the research on what changes people can make to be happier – I know all about happiness baselines etc): does it have the same findings for autistic people/women? Autonomy, community, stuff like that. And if the findings seem different, is it really the same thing but expressed in a different way? (E.g. the need for community looking like the sharing of intellectual pursuits)
I feel sure you must have a link for this.
Everyone has a happiness baseline. Autistic people are likely to have a baseline that is less happy.
Mistake #2: I was trying to be concise. I thought if I were concise, you would be more likely to reply, so I edited my comment down. But when I said,
“Happiness research (I.e. the research on what changes people can make to be happier – I know all about happiness baselines etc): does it have the same findings for autistic people/women?”
I meant,
“I know about happiness baselines, so don’t tell me about that. I mean the portion of things that we can take action to change about our happiness level, like finding community. Do autistic people/women need to take different actions to get as happy as they can be, or does their happiness depend on the same stuff (like friendships) but it’s just what that stuff looks like that looks different (like friendships being based around a shared interest not just “hanging out”)?”
Sorry for the confusion.
My daughter (age 21) diagnosed herself with autism after taking a psych class in college. I told her I don’t think she is. She said it’s because it’s harder to diagnose in girls. I said, no, you are just more like me than dad. Then she told me I was autistic. After my dad died, my sister and I were talking about my dad and we had both come up with the thought that he was on the spectrum. I always attributed the fact that I’m an INFJ to the reason I’m so often misread, but who knows?
A good way to decide for yourself if you are autistic is to ask if you value interestingness over connection.
I know that you have spent a large amount of time writing your ideas online, because I’ve read them. That’s interestingness. It does not help you make real-world connections with family.
Neurotypical humans do not value interestingness more than family connection. It’s actually why autistic people make a huge difference in the world: we have empathy for social justice and big ideas the way neurotypicals have empathy for their own families.
Writing ideas online is not a normal thing for an adult female to do because it detract from so much that is normal for an adult female to care about. Women with higher testosterone (which is what autism is) can’t stop themselves from caring more deeply about intellectual engagement.
What makes people uncomfortable is they don’t like this definition of autism. People want to be interesting and intellectually engaged and neurotypical. That’s not how life works. As adults we prioritize — and caring for family and intellectual engagement are not symbiotic.
I’m taking the time to lay all this out because when you tell your daughter she is not autistic and you’re not autistic it’s such a missed opportunity. You could be learning alongside her, and learning about yourself. Instead you are isolating her in order to protect your own version of yourself.