I’ve been pondering this all day, and how to put my response. I have some gut feelings, but they’re hard to put into words.
First: there does seem to be an element of heritability (with autism at least), so it’s not inconceivable that families would have traditions of coping skills. Whether those traditions are effective is another question.
On the one hand, they may have evolved over many years to address evident difficulties, and to have winnowed out the best ways to deal with things.
On the other hand, they will necessarily have done so in ignorance of what’s actually going on, or possibly even that there is something specific going on, just a general sense that “that’s just how we do that in our family.”
It also doesn’t allow for increased understanding of the underlying issues to inform where coping strategies could be improved, or even where coping strategies could be eliminated as redundant. (Especially if those coping strategies are based around masking and hiding difficulties, which seems likely in many families: even where a family might revel in a reputation for eccentricity, that would likely be as a way of normalising and minimising what couldn’t be hidden.)
But to actively refuse diagnosis in favour of such things?
More complications arise from that. To start the discussion: I can see why parents might want to avoid a diagnosis. It does come with discrimination, and can be a source of bullying in the schoolyard. I can see where parents might want to see if they can bypass all that.
The downside there is that none of that is bypassed. The discrimination still happens. The bullying still happens. It’s just that there’s no explanation for it, and no official respite or recourse. Which is worse? I don’t know that there’s any good answer for that. Most of the autists I’ve seen speak on the topic wouldn’t go back to not knowing, if it were possible. Knowing what’s going on means being able to do something about it, even if all you can do is remind yourself that it’s not your fault.
Because, remember, late diagnosis means many years where there was definitely something wrong, and usually some degree of awareness that something was wrong, and no explanation for what’s wrong except that you are a fundamentally broken and morally bad excuse for a human being. That really, really fucks you up for life, that grinding sense that everything bad that happens to you is because you deserve it, that all your successes were stolen somehow.
So on balance, the consensus in the autistic community would appear to be “it’s better to know than not to”.
But it’s hard to make that leap for your own child. “I think you’re autistic, and this nice person is going to test you and find out” is hard. Especially so when teachers over the years have been telling you things like “oh no, she’s just quiet”, and “she’s lovely in class, so quiet, but quite smart, I think she’s going to do really well in her year 12 scores.” [Narrator: she did not do well in her final year 12 result, and the first warning was the final notification of results from the board of education.]. Every parent wants their child to have the best chance at a successful and happy life. Which, if you’ve grown up neurodivergent, probably means something along the lines of “please let them not be like me”. And it sucks that it’s like that, but please believe me that it really is like that.
So I get not wanting to get a diagnosis. It’s like, even if you strongly suspect it, getting the diagnosis makes it real.
It’s just…
If you’re actively preventing a diagnosis, but you’re consciously doing things to mitigate the effects, then you must already basically know the child is neurodivergent. Are you telling them that’s what’s going on? Are you telling them that’s even a possibility, a probability? Do they know what neurodivergence even is? And if you’re applying “family lore”, is it updated with current understanding of the science? Does the child have the possibility of getting official supports and accommodations, or are they just being left with “our family just deals with it like this”, and made to figure out the rest by themselves?
How much of this is “that’s how I was raised, and it made me the person I am today”? Is “the person I am today” the person I want to force my child to be? Or do I want to help them be better? Happier? More self-aware?
There are a lot of contradictory feels going on here, and it’s all still new and murky and unexplored territory. But I think I’m coming down on the side of
A: The way this is phrased implies that the parent knows what is going on, and is refusing to allow modern understanding to interfere with family tradition. I think this is bad, but tradition is by its nature hard to break.
There is no control sample. I mean, the way I was raised “worked”, for certain values of “worked”. I have a successful relationship, a well-paying stable job, I suppose I’m “reasonably happy”. (Alexithymia and depression and anxiety and a vanishing small self-esteem means I don’t really know what “happy” actually means, but I am amazingly lucky, and aware of and grateful for that.) But would it have been better if I had known as a child why nobody wanted to hang out with me? Why other children were bewildering chaos goblins, and I only felt comfortable around adults? Why I kept getting in trouble for breaking rules and social norms I had no idea even existed, and nobody would ever explain to me? I do know that I sometimes daydream of timetravelling back to my primary school, and taking taking the teachers aside and pointing the younger me out and saying “you see him? You’re about to punish him for something he doesn’t understand. You are about to lay a memory of pain and confused humiliation that will follow him the rest of his life, for something which isn’t his fault.” I want to go back and tell myself what’s going on. I want to go back and be the defender I never had. But I can’t. I can only daydream of what might have been. What does “reasonably happy life” even mean? You mean, despite all that?
Of course the end results matter. Is it the only thing that matters? No. Indeed, the means to the result is part of the result. History bakes itself into a person. There is no such thing as a person emerged from a vacuum, free of the burden of their own life history. Because there is no person who emerged fully formed from a vacuum.
How do I decide “what measurements of parenting/nurturing results are valid?”
I don’t. I don’t know that you can “measure” that. All any person can do, as a parent, is the best they can in the circumstances for their children. Nobody can ask more of a person, and no child should have to expect less.
I don’t think the question makes sense; it’s a category error. Any direct answer to that question misses the point that the question itself is wrong. IMHO, anyway.
What would I know?
