Guess who just sent that to her daughter with ADD/Dyslexia/Anxiety/slight OCD?
Thanks!
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Don’t forget to add in being treated like a drug-seeking reprobate by every pharmacist and way too many doctors just for wanting to get a refill on a prescription they know has a big downside if you go off it cold turkey.
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There was a part in there that was heart-wrenching. Let me go find it…
The report also reflects improvements in identifying and addressing racial disparities in diagnosis. For the first year since the start of the ADDM study, people of color were identified with greater frequency than white people. This likely reflects long-term efforts to reach communities of color and improve access to early identification and services. However, some diagnostic disparities remain and continue to be an issue for autistic people of marginalized races, ethnicities, and genders. As in prior years, the report showed that Black children were more likely also to be diagnosed with an intellectual disability compared to white or Hispanic children, reflecting a longstanding history of racism in how Black children with disabilities are labeled.
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As we enter this month, I want to focus on one of the major obstacles to autism acceptance. Many people and professionals tend to reject and invalidate adults diagnosed with autism later in life rather than in childhood.
I specialize in treating and testing people for autism. I use the same psychological testing procedures other professionals in the field use. The tests I use are reliable and valid. If necessary, I send people to other practitioners for second opinions. Yet almost every client I have has to face the same thing when they are done with testing. Almost all of them must deal with friends, family members, and other professionals that say, “I just don’t see that,” “You don’t have autism,” or “You don’t seem autistic to me.”
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What would y’all think of a parent who refused to allow schools and doctors to diagnose a child or children with any kind of neurodivergency, and instead taught coping skills to the children based on family lore (this lore having no scientific or theoretical basis, just tradition)?
Would your thoughts about such a situation take into account whether it worked (in the sense of the child or children having a reasonably happy life, successful love life and career, etc. etc.) or does the end result not matter? If results do matter, how would you decide what measurements of parenting/nurturing results are valid?
I would wonder why the parent couldn’t teach family lore and get a diagnosis. Why would the two be exclusive?
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Speaking from experience, it’s much more useful for a neurotypical member of the younger generation to teach coping skills to the neurodivergent older generation.
You can’t know until it’s too late whether or not the informal family training made it possible for the neurodivergent child to live up to their potential as an adult.
At best, it’s probably a pseudo form of Applied Behavioral Analysis (ABA) except not even that scientific, and ABA is known to not actually serve the neurodivergent person, but rather make their behavior easier to deal with for the neurotypicals in their life.
Besides, without the official diagnosis, the child does not get access to the educational and social support they need. What kind of parent chooses to hobble their child like that?
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If such “training” comes from a relatively rigid or dated system of beliefs, particularly highly social, conservative religious groups, then I think you’re setting things up for deeply internalized stress and eventually a fairly sharply negative outcome, if not for all, then at least for many involved.
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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?
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I’m sure it is very different depending on where a family lives, but in my child’s school, that diagnosis opens a lot of doors, gets accommodations, gets the child some wiggle room on discipline, and means more adults are looking out for that child. Allowances are made, support offered, and more adults watching for bullying.
I can see a family who lives somewhere that a neurodivergent diagnosis means discrimination choosing not to inform the school. But not getting one at all? How does the family even know they are correct? What if the child isn’t neurodivergent in the same way as the other neurodivergent family members or has some added situation? As a parent, I would want to know as much as possible so I could find ways to help my kid live and grow.
This premise- it seems like a family that is unwilling to accept neurodivergence, who thinks it must be hidden away and shameful. That is damaging to a child.
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Oh my God, you have no idea how much truth there is in this. My youngest was “defiant,” “disrespectful,” “in need of a good ass-whipping,” until we were able to get an ASD diagnosis. It didn’t change them any, but it gave us an answer when they said stupid shit. It made a big difference.
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This, for sure. I don’t have an official ADHD diagnosis but I do have an informal one, and am medicated for that which helps immensely. And when it doesn’t, or I forget to take my meds (sadly all too common), it gives me an explanation other than the ones that were drilled into me as a kid - namely that I’m lazy, unmotivated, a problem, and a failure - and I can then get to addressing whatever the issue is without an unhealthy helping of guilt and shame weighing me down for the rest of the day.
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Thank you for that lengthy but very thoughtful answer. For whatever it’s worth, I was thinking along the same lines, but you very much helped me clarify some things in my mind.
I’m slowly coming to the conclusion that if refusing to allow your child to be labeled as neurodivergent is a good idea, that necessarily means something is deeply broken in the pedagogical, social and/or medical environment(s) in the community.
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Yes. In some schools, getting any sort of diagnosis means being put in the back of the class, and being deprived of the level of personal attention that the other students receive. But one of my sisters says that in the school where she teaches, it’s the exact opposite, those that need more attention will get it, so parents ask for a diagnosis even though their kids aren’t displaying any neurodivergent traits. Personally I think the unhealthy student/teacher ratio in American schools is probably what drives both these processes.
Me too. My father’s family has a heritable knee condition; I have it, my son has it, my father, grandfather and great-grandfather all had it. I was taught what to do and it’s been relatively manageable for me, but my older sister has been relatively unlucky. When my son’s pediatrician identified and named the problem, we suddenly gained access to a lot of information. Things we didn’t know we didn’t know, as it were.
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