All that makes total sense in the context of kids. Who after all are amateur apprentice adults with all the privileges and limitations inherent thereunto. If they need to have a meltdown to get through the day, then that’s just one more accommodation the adults in the family need to get on board with. Sucks some to be a sibling who lacks the same level of coping skills, but that’s the way life is sometimes.
I was mostly thinking of adults treating with adults while I was writing. And yes, the luck of the draw dictates for each of us how much of an extra burden it is (or isn’t) for us to be an amiable companion able to play our emotional instruments with reasonable skill.
Yes, compromise and burden sharing is a big part of that. So long as “from each according to their ability” doesn’t turn into “I give nothing since embracing my handicap as excuse is sooo convenient”. And “to each according to their needs” for sure says the giving and taking will be different from each in both amount and in kind.
IMO there is no saint who can’t be destroyed by a needy enough selfish enough counterparty. Some of whom seem to pick up speed based on how saintly a mate or co-worker they’ve found to suck dry.
I run a weekly roleplaying game with some friends of mine, two of whom are autistic (or is that persons with autism?) one of whom is also ADHD. One of them has a difficult time when the rules for whatever game we’re playing aren’t codified to his satisfaction. When it’s his turn for his character to act, he sometimes gets stuck because he doesn’t know what he can do. He’s getting better as we play more games using those rules though. My other autistic player with ADHD will often go on tangents and take us all down a rabbit hole. We’re a pretty casual group, so it’s not disruptive for the most part. Sometimes she’ll also get distracted and isn’t paying attention to the game. Understand they’re not being rude or obtuse really does help me accommodate their quirks.
The stranger on the street who grabs you from behind to keep you from walking in front of an unnoticed bus is your friend. The used car salesman who pours you a coffee is not.
That your fellow gamers aren’t acting in malice is huge. Even if the behavior is vexing on the surface.
Not sure how well The Atlantic gift link works but giving it a shot as this seems on point for this discussion. Albeit a bit uncritical in its acceptance of the benefit of an accurate mild autism diagnosis …
I hear that. Lately I’ve been trying to cut down on “because I have ADHD” and framing it more generally, like, I struggle with task initiation, or sometimes I easily lose track of time. Trying at least to not make it a foregone conclusion that I’m going to lose the plot. And in that case you can spread your net even wider because there are lots of people who can relate who don’t have the label.
Somehow I have to start thinking about it more positively. The way you have framed it, focusing on the coping method, is really good.
Here I admit, speaking for myself, I’ve never found online communities for any of my Dxes helpful. They usually make me feel worse because they are populated with people in their lowest moments. But I don’t think that’s the experience for everyone.
Now in real life, most of my friends are either autistic or have ADHD. We seem to collect each other. That’s a point where we can really come together in a positive way and support one another.
The hardest thing for me when I was diagnosed was the insight it gave me into my childhood and my mother’s abuse. She had said so many times “something is seriously wrong with your brain” and she took it all personally, and the fact that I was excelling in school didn’t help my case that it wasn’t intentional. I basically went through all the fights and shitfits and crazy severe punishments and threats and realized it all stemmed from her inability to cope with having an ADHD child. (Well, and her mental illness, obviously. There were many factors at play there.)
I have one now and can confirm it’s really stressful! I think someday, on the balance of things, he will be glad that I knew he has ADHD and could seek out support and resources. But it’s still hard!
And if my mother had dragged a quiet, obedient straight-A female student into a psychiatrist’s office, they would have laughed her out of the office.
I can be mad at her for how she handled things, but I can’t be mad that she didn’t know what was going on. I don’t know if it would have changed anything.
A few years ago when I was helping my son get on the school bus, I had the thought that I needed to have experienced all of that in order to be the best possible parent to him. I wouldn’t be able to respond the way I do without the pain of knowing the wrong way to respond. And if that’s the case, if I had to go through that to be the right parent for him, I’ll take it. Worth every grueling minute of my childhood.
I think the real issue, and the one I’m desperately trying to stave off with our older son, is that the wider world doesn’t get autism. If our older son is socially awkward, profane at inappropriate times, and not compassionate at times that society deems that he should be, then people are going to harshly judge him, rather than go “Well, he’s clearly autistic, maybe we should cut him slack.” He’ll be perceived as an asshole and weirdo, rather than a neurodivergent person who is doing their best, and who deep down, isn’t actually an asshole, but someone who doesn’t quite get how to behave.
Maybe part of it is that I’m not entirely sure that I myself don’t have a touch of the autism. My therapist (a PhD in psychology) says that I don’t have any of the obvious signs, but then again I struggled mightily with dealing with the opposite sex as a younger man, and to me, it seemed like there was something about me that was different in some way that was hindering how to go about dating and moving from there to sex.
So I’m a bit paranoid about my son as a result. I feel like I “get it” to some degree, even if I can’t effectively communicate to him how to actually behave in a way that he’ll actually understand.
That said, he does make friends with other nerdy kids, and especially with spectrum-ey kids. So much so, that a friend he made at Space Camp in Alabama came several states over to visit this past summer.
I don’t know… I just worry because he’s awkward in ways that I never was, and that I can’t quite understand. But he seems to do ok, in spite of all that.
I worry about that too. My son is really sweet, feels things really deeply, but you don’t necessarily get that unless you get to know him and the unique way he expresses affection. Sometimes because of his bluntness and impatience he comes off really like a spoiled brat. “I said I want this now!” And he’s very argumentative.
Behind closed doors, so-to-speak, you’ve got a kid who is obsessed with his Lightning McQueen Squashmallows. He got a new one when he had his surgery and with so many, he decided to give one away to “every person I love.” He stayed over at his great-grandmother’s and gave her and his Papa each one to sleep with.
My son is starting at a special school for neurodiverse kids in two weeks and I am really hoping he fares better with teachers who get it.
As for me, I get annoyed with his rudeness, but he hasn’t got the message yet, and sometimes I wonder if I should just let it go. He’s already starting to get social pressure not to have screaming fits.
I’m beginning to wonder if people just are who they are and as a parent maybe it’s better not to try to make them care about the same things you do. He has his parents’ empathy, his mother’s impatience and his father’s mental rigidity. I want him to love trying hard things because so much of my life satisfaction comes from that, but that’s my life, you know? Maybe he gets satisfaction from something else.
He may be rude at times, but one of the things I love about him is you always know where you stand with him, and if he says or does something nice, he really means it.
FWIW I personally think of as like dyslexia? A majority of us mostly learn the rules of phonics without needing to explicitly learn them, with some having to have them explicitly laboriously learned while also memorizing more sight words and other work arounds. Many of those with autism need to learn the rules of social interaction the same way. “Stand this far away …” etc. Yes it helps to be in an environment where grace is allowed for not understanding the rules, and where less stress and work has to devoted to the attempt to follow them, so more is available for other work, learning and emotional both. If that makes sense?
First off, your initial argument was bad. I pointed out what people in the community who have a preference have stated. Your argument was “well, I doubt most autistic people care.” Let’s say that’s true: that would logically mean that you should still use the term that the people who do care prefer. The people who don’t care won’t care.
But I can’t even give you that. Because that initial argument was not based on any observations or data. It was just you saying how you think you’d feel if you were autistic. You’re not. It’s shitty of you as an outsider to think you can say that. That’s why I cited advocacy groups, because they were better than your ass pull. (And why I found your post offensive.)
Then, after that lecture where you assumed I didn’t know anything, you finally do bring out a study. But then you don’t seem to have read beyond the conclusion. Because, if you had, you’d see that IFL (Identify First Language, e.g. “autistic people”) actually was preferred in nearly all the studies described. There were some Dutch studies showing no preference, but that was in a different language. There was some support for PFL (People First Language, e.g. “people with autism”) but it was always lower.
What you saw if you looked beyond the conclusion was that there was a marked preference for IDP “autistic people”just like I said. Heck, in some studies, it was considered acceptable in as high as 95% of respondents.
And then you had a mother of an autistic child echo my experience afterwards. But of course, I don’t know what I’m talking about.
The best steel man of your claim I can come up with is that you assume that autism advocacy groups do not have higher support needs autistic people in them, and that, in fact, they all disagree with the lower support needs on this topic. (If you think they simply don’t care, then I refer you to my first full paragraph.)
But you have not shown either of these. And the whole thing was you just lecturing me for giving a friendly heads up for the current terminology that is generally accepted by the wider community. All based on “well, I imagine” and what you yourself call a “WAG.”
You then incompletely read a study, and changed your argument to the platitude “call people what they want to be called.” Yes, in individual cases you can ask. Obviously. You can’t when having wider discussion. You have to go with the widest accepted version, which I was kindly sharing.
I also don’t appreciate you @-ing me to condescendingly say that it’s okay I didn’t know about higher support needs autistic people or the disagreements between those with lower support needs. That’s an assumption based on nothing. (In fact, I mentioned this in my first post in the thread.)
Click to read
People-first language was imposed from the outside after people were already using identity first language, and it just wasn’t as widely accepted as in other groups. And it matters because it acts as a bit of a shibboleth: do you listen to autistic people, or assume you know better?
People knowing better has been what autistic people have faced all their lives.
Disclaimer
And yes, I know the aesthetics. A BigT rant. when y’all are being friendly, even. I do try to minimize them, but this one seemed important, even though y’all had moved on by the time I saw the thread. I apologize if I hijack the friendly convo, but I figure it’s really just generic talk now, so worst case (the thread gets hijacked) y’all have to have it in of the many other threads for autistic people and their parents.
I just think this is important, both personally for not being treated condescendingly and as an advocate and ally.
Oh, and since I probably won’t be back for a while: suggesting some people see autism as a club to want to join is generally offensive as well. I’ve seen rant after rant after rant on that. It suggests that some portion of the “club” are faking. It’s part of the high animosity between parents of HSN autistic people who claim “those people with the blue hair” aren’t really autistic. Honestly, I blame the divide more on those types of parents, as they make the LSN autistic people less willing to listen. Throw in those who used barbaric therapies on their kids that they as adults point out how cruel and hurtful they are, and you have a huge mess.
And that relates back to the OP and the whole “autism isn’t bad” idea. It comes from LSN autistic people who feel like they are being put upon by allistics.
It’s not some one sided “LSN autistics not listening to those with higher support needs” as is represented in this thread.
This is a real and significant issue. Though I’m Level 1 ASD and quite high functioning, despite what all the warm fuzzy people say about how we should just accept all neurodiverse behaviour, I’ve had to mask - no is no practical way I can not mask in certain situations. For example, in my last job before retirement, I would often be in meetings with our clients, such as Lockheed Martin or Airbus, or the Royal Canadian Air Force, for example. I can’t just sit in a meeting and react inappropriately or passive-aggressively to legitimate comments about my work, or festoon the meeting with a cavalcade of weird jokes and bad puns, which is an ongoing tendency in my brain; without me making the effort, my brain is constantly and automatically hearing words and phrases and constructing puns or even stupid little poems. There’s no way in hell I can just let that crap fall out of my mouth whenever it happens.
So all these positive thoughts are not necessarily helpful or unrealistic. My wife and I are financially and materially quite comfortable. If I didn’t mask, then I could be potentially unemployable and job-hopping through a series of of broom-pushing jobs and now living in some crappy crash-pad in one of Ottawa’s shittier parts of town.
Yes, for the lower-functioning folks, there has to be a better way, but blithely hand-waving away the reality and saying that everybody should just accommodate is not realistic.
Yes, and he has a hard time generalizing and understanding context. It’s like his brain is a series of if-then statements. He hates ambiguity.
So he has learned please and thank you and uses it with some regularity, but he doesn’t understand why it’s rude to tell someone who gives you a gift “I don’t want it,” and if he doesn’t understand something like that, he tends to get really angry about not understanding it. And he spots apparent contradictions in these rules really easily, and it’s difficult to explain the different contexts. So I really think a lot of time he thinks we’re full of shit.
There are times we’ve told him some social rule that he interpreted so narrowly that he missed the point, or, in the gift-giving example, we accidentally omitted something that was self-evident to us and we assumed he’d understand. My husband told him secretly, “Great-grandma has something for you. If you don’t like it, just say thank you and I’ll get you something cool later.” When my son received the thing, he said to her, “Thank you. I don’t want it. When am I going to get the cool thing?” My husband neglected to explain the part about graciously accepting gifts. Fortunately she took it really well.
He can learn and absorb these individual rules but it’s harder for him to get the big picture.
It’s the difference, too, between top-down and bottom-up thinking. In my approach to things I’m super conceptual. My husband, in contrast, must start with the smallest details and work his way up to the concept. I think my son inherited that from him. Incidentally, I’ve been reading Sherlock Holmes, and he is a fine example of a bottom-up thinker. He examines the minute details before he reaches a theory of the crime. I think each method is useful for different things.
Reading this thread reminded me of when my daughter argued strenuously that autism isn’t a disability and that the autism speaks group is evil and doesn’t speak for autistic people.
My daughter has had mixed diagnoses, but probably has some level of what’s called autism these days, along with a much more hard-to-copy with anxiety disorder and a tendency towards depression.
I replied that i think the group is more a support group for parents of severely autistic children, and that autism can be a serious disability. And i pointed to my friend whose entire life has revolved around caring for her severely autistic son since he was diagnosed. Work? No way has she had time or energy. All infants and toddlers are incredible time sinks for their parents, and you shouldn’t have kids unless you are okay with that. But most 16 year olds aren’t, and their parents can do still like go out in the evening, and work, and pursue interests that don’t include the kid. Whether or not the kid likes being that way, that’s a disability.
I’m not defending “autism speaks”. It may be terrible and support terrible things. But I’m also not willing to say, “autism is a good thing and autistic people should embrace it with enthusiasm.”
I do think a lot of strife is caused by lumping together people who are quirky and maybe have some social and sensory issues that they can work around with people who need intensive specialist support to learn to speak, or who never learn to speak.
And I’m dubious that the same underlying causes manifest either way. I think different (more) categories would be a really big improvement in the public discourse, and probably also lead to improvements in treatment.
Reading this thread reminded me of when my daughter argued strenuously that autism isn’t a disability and that the autism speaks group is evil and doesn’t speak for autistic people.
My daughter has had mixed diagnoses, but probably has some level of what’s called autism these days, along with a much more hard-to-copy with anxiety disorder and a tendency towards depression.
I replied that i think the group is more a support group for parents of severely autistic children, and that autism can be a serious disability. And i pointed to my friend whose entire life has revolved around caring for her severely autistic son since he was diagnosed. Work? No way has she had time or energy. All infants and toddlers are incredible time sinks for their parents, and you shouldn’t have kids unless you are okay with that. But most 16 year olds aren’t, and their parents can do still like go out in the evening, and work, and pursue interests that don’t include the kid. Whether or not the kid likes being that way, that’s a disability.
I’m not defending “autism speaks”. It may be terrible and support terrible things. But I’m also not willing to say, “autism is a good thing and autistic people should embrace it with enthusiasm.”
I do think a lot of strife is caused by lumping together people who are quirky and maybe have some social and sensory issues that they can work around with people who need intensive specialist support to learn to speak, or who never learn to speak.
And I’m dubious that the same underlying causes manifest either way. I think different (more) categories would be a really big improvement in the public discourse, and probably also lead to improvements in treatment.
I hear that this is important to you and I respect that, even as I stand by my points.
My not being so sure that your confident assertion of what most want is accurate was definitely not based on how I’d think I’d feel if I was autistic; it is based on nearly four decades of experience with the population, screening and providing early referrals for services, and providing care for those who have the diagnosis as their pediatrician.
I am in fact sure that among those many real life kids, young adults, and families, your confident statement is false.
That said most of the years of those nearly four decades were before 2013, the year the definition of the diagnosis changed. There are significant numbers in a group who are now accurately labeled under current (after 2013) broadened autistic spectrum disorder diagnostic label, labeled as adults, and they are a smaller subset of who I see - non zero though, there are some high functioning teens who have been diagnosed in high school, and as I am sure you are aware there is some overlap there with trans and fluid gender identities. The patients I see diagnosed as adolescents have not referred to themselves as “autistic teens”; they are usually sharing that their neuropsychological evaluation has given them the label of having ASD (and whatever else it says) and we then usually have a conversation about what they think and feel about that, and how they (and their loved ones) will use that diagnosis to help them moving forward. I hear teens less often expressing that sense validation adults describe? More they see it as a tool to use, a shorthand description of some but incomplete utility, not a declaration of who they are. But then they got the testing for reasons. The results were rarely revelatory to them, their parents, or me. The kids who are both trans and level one ASD DO care about how they are referred to in gender matters, and I usually verify that their preferences have not changed each time, but not any care about “autistic person” vs that they have autism. These latter groups aside most of my, I dare say extensive, experience, is with what we can call OG autistic kids
But I have little experience in on line support communities for those who have discovered they are autistic as adults. Even though can be very vocal. I defer to you as expert on what “most” that segment of the vast sphere now covered under the Autistic Spectrum Disorder want to called.
A few things not worth taking up space or hijacking’s over:
Summary
I think you really should try to reread the studies.
@ ing someone in my book is not condescension - it is manners. Others it is gossiping about them behind their back.
I’ve personally never met an individual or a loved one who is looking for a cure. I’m sure they exist. Most energy is spent caring for the child and trying to help them be the best person they can be. What every parent wants but there is a bit more work involved! Unless you think @Spice_Weasel is trying to “cure” her son by teaching him explicitly rules of “neurotypical” social engagement? Do you?
You call yourself an advocate and and an ally but let’s be very clear: you are no advocate or ally of any of the (I respect your sensitivities) autistic child I have and continue to care for over the years: you are at possible most an ally for the specific group of people who are diagnosed with ASD after the 2013 revision and previously would not have been included in the definition. When you make a statement about what “most” want based on speaking only with them you demonstrate that those who I care for are to you invisible. Oh you know they exist, you mention them in your first post! But they aren’t “autistic people” of concern to you. Have you ever spoken to any of them and their caregivers?
I like to think I gained more empathy as I aged, but in my youth I used to think of those things this way (not completely seriously, but also not completely in jest) :
“Most people are idiots, they care more about appearances than truth, so it doesn’t matter what I really think I must say complimentary things about what they say and do or they’ll get angry”
(This applied too to things like personal grooming and the like, “if I go extremely well dressed and groomed to this, my first, job interview it would impress them more than anything I know or can do, because: see above re: appearances, truth”)
Perhaps that could be an useful way for your son to base an strategy on?
when y’all are being friendly, even. I do try to minimize them, but this one seemed important, even though y’all had moved on by the time I saw the thread. I apologize if I hijack the friendly convo, but I figure it’s really just generic talk now, so worst case (the thread gets hijacked) y’all have to have it in of the many other threads for autistic people and their parents.