More to the point maybe - what if you were? What if you went for a comprehensive evaluation and you were labeled as ASD level 1?
To my way of thinking that could possibly be useful to the degree that it was an accurate shorthand way to describe certain aspects of you, but it is just that and only that: it is a description not an explanation.
I can sort of see your way of thinking but what it comes down to is this. The appropriate intervention for someone with social issues differs wildly depending on the reason for those social issues. You can’t cure autism with exposure therapy any more than you can cure childhood trauma with social skill building. The cause of these things matters from a treatment perspective. And it absolutely matters from a research perspective.
I will add: I hung out in autistic women subreddits for a while, and almost all of them identified as being autistic with “CPTSD.” CPTSD, which is not in the DSM, is a label often applied to people with repeated childhood trauma. When you have such a high number of undiagnosed self-identified autistic people who were diagnosed with PTSD from childhood trauma, it makes you think maybe PTSD is the more appropriate diagnosis there. But there’s also the fact that autistic girls are at higher risk of experiencing childhood trauma, as are ADHD kids. And ADHD and autistic kids often have ADHD and autistic parents. It gets complicated real fast.
I guess I’m fortunate that my son’s autism “superpower” is a passion for Lego, videogames, and geopolitical strategic esoterica. When he was younger there was a period where we were concerned that we were in for a lifetime of counting traffic markings and meltdowns whenever we changed something in the apartment. But over the years he’s chilled out significantly and is more or less like any other kid his age (11). Just with some odd interests and mannerisms from time to time.
I feel like that’s a bit “pot calling the kettle black”.
We have previously discussed the very significant limits of the current nosology as a research, or even as a clinical tool:
You really hit it though in your last post. Yes there are different approaches (albeit evidence is sparse) used if the individual has trauma with autistic characteristics or primary idiopathic autism, and both are present more often than is appreciated. Practically though? If there is a trauma history try the trauma focused therapy at least in conjunction with the autistic focused approach: symptoms caused by trauma may be remedied more often with trauma focused care and a person with autism who has trauma should still have it addressed.
But that is a very specific context with a straightforward answer in my mind: treat trauma history in any case. But the context of someone like @Moriarty ? What if an evaluation surprised him and labeled him as ASD? And?
The “superpower” bit is overstated but the concept of neurodiversity affirmation is powerful Many of the problems you want your son to avoid are not from the autism really: it is from the mismatch of him with the world. Your work has been to wonderfully get him into an environment that fits him better so he doesn’t experience only the negative aspects. His strengths are also part and parcel of his core.
Yeah, I’m not guessing, and this isn’t even based on my experience alone. It’s a huge topic in autism advocacy community, and the vast majority of autistic people say they hate the people first language, because it treats the autism as something separate, something that can be cured.
It’s one of those things that’s in the same category of thinking Speedy Gonzales is racist, when actual Mexican and Latino people love him. Well meaning people sometimes are not in line with what a minority community actually believes.
I’m not really sure why you’d think a WAG and how you’d feel would be relevant, but it isn’t. I just was politely informing people of the accepted language.
The “autism advocacy community” does not necessarily or even probably reflect the majority of people with autism, and is heavily weighted to a very specific self selected slice of people with that label, mostly high functioning and many who have sought out a diagnosis as adults.
They do not represent the young adults with various levels of disabilities I have seen on my practice over the years.
It is really the tension this thread is about - these more recently included in the umbrella thinking they are what autism is for all. And the more significantly impacted, identified in early childhood with significant issues from early on, getting their needs discounted, because those highly functioning autistic individuals swamp their needs ou.
To go beyond my WAG the largest review of preferences, Identity First Language (IFL) or Person First (PFL).
… Across studies, participants were not representative of the entire autism spectrum (e.g., likely few participants with intellectual disability).
Conclusion
Study results vary widely and suggest no consensus as to whether individuals with autism prefer IFL or PFL, neither across nor necessarily even within cultures and languages
The best practice is like pronouns: don’t assume what people want to called by, don’t think you know, ask and respect what they say. In a general use not talking to an individual? I think it is a bit presumptuous for some of the highest functioning group to speak for all.
What’s really fun is when they think they know what’s best for your kid better than you do, without ever having met you or your kid.
I avoid engaging in online autism spaces re: this subject, most especially reddit and YouTube. I used to worry what people would think of my parenting but it’s not even that anymore. It’s just that it’s so transparently stupid to think you understand someone you’ve never even talked to because you share a diagnosis.
I tend to use “autistic” instead of “person with autism” because that’s what the autistic people in my life use. It’s hardly a settled matter. And where I’ve really seen pushback on it is r/spicy autism which is mainly Level 2 and 3 autistics who left r/autism because of level 1s dominating the narrative and trying to define their experience for them. I think you will find a lot more variation in preferred terminology within that population (and a lot more acceptance of parents who are doing their best.)
We are good friends with an autistic autism activist. The level of infighting within the autistic community is difficult to overstate. She’s had to leave spaces because she refused to say that Level 1s deserved more support and resources than Level 3s. We’ve also seen parents of higher support needs kids kicked out of parent support groups because they refused to tow the party line that autism isn’t a disability. “Autistic person” and “person with autism” may seem like a trivial difference to some, but it’s really about what identities these terms represent, and there are deep personal convictions behind either.
Ultimately I think the authority on my son’s autism and what language he prefers and whether or not he’s disabled will be him. He is the authority. Until he gains full agency I have to guess what’s best, but he’s pretty good at providing feedback. We like to call him a terrific self-advocate!
Of course ADHD doesn’t have a cool alternative to “people with ADHD.” I’ve heard “ADHDers” but that’s so clunky.
I once heard a guy jokingly refer to himself as a “person of ADHD.” That’s the best one I’ve heard so far.
(I do wonder what the dialogue looked like prior to changing the DSM to broaden the diagnosis. Would we have this infighting if it were still Asperger’s and autism?)
This is me, though I wasn’t diagnosed, but also I can say that my diagnosed teen could not care less whether she were called an autistic person or a person with autism, and thinks the whole issue is silly. Though she thinks of it (and we’ve encouraged this and always spoken to her about it this way) as a label that, as you also say above, is shorthand for how her brain works, and she doesn’t identify with it any more than she identifies with having a certain color of hair, or being relatively tall – both of which, especially the latter, are important parts of her self-conception, but she doesn’t identify as either of them.
(she identifies most strongly as a Math Person or a Person Who Likes Math, which has its own problems as an identity but at least doesn’t care what it’s called.)
Then he would know.
I think knowledge for knowledge’s sake is a perfectly okay reason to want to know about yourself. I am going to spend the rest of my life with myself. I want to know everything there is to know. I need to know what I’m working with to be effective.
And then there’s the community aspect.
But for me personally, I manage well enough socially that it’s rather a moot point. My biggest social problem is social anxiety. Something interesting happened this morning where my PTSD was triggered and I had to drive to a conference and traffic was awful and I was running behind. A triple whammy of anxiety. By the time I arrived to the conference, my anxiety was about a 9/10. It seriously sucked.
I said to myself aloud, “I can handle anxiety” and I went in and did the thing. It was hard for me to get started, but I ended up talking to a couple people, including one who worked with refugees in shelter, and I asked her (very relevant to the conference) questions about how the rate of chronic homelessness was so low at her agency, since ours is currently so high, and we really hit it off.
I’m socially awkward sometimes, it’s hard for me to introduce myself to new people, I often get completely drowned out in group settings, but not everybody has to be the life of the party and I get on well enough.
The reason I went to get evaluated for autism is that my husband was learning more about a phenomenon called autistic burnout and it exactly described my experience at the time and I was really suffering. The features described were increased sensory sensitivities, sudden loss of function and something else. I’d been struggling for seven months and I told my husband, “It’s like I am acting severely depressed, but I’m not depressed at all.”
He’s the one who pointed out what this looked like. That was after I had to take three days off work because my body felt like it was shutting down. It was like I had to reboot myself. It was utterly bizarre to experience and I don’t know how to describe it, but it’s happened twice in the last few years, over a series of months.
The reason this matters is because autistic burnout is not depression. You don’t get better by doing things, you get better by not doing things. You have to structure your life very carefully to gradually work up to full functionality. White-knuckling it makes it worse.
Who knows, maybe I had ADHD burnout, though that description did not comport with my experience.
I wanted to know, though.
I think knowing can be an end in itself.
Holy shit, the entitlement!
They were working on it but then got distracted.
(I know I’m awful.)
I would think the “person” part should be assumed. You don’t need a clarifier to make it clear that you don’t mean a squirrel with autism or a pilot whale with autism.
In general, I find the policing of language really tiresome. I understand why these words are important to people but it’s also exhausting, especially when different people are stridently telling you different things, so you feel like an asshole no matter what you choose.
I agree with DSeid it makes the most sense to just ask people what they prefer.
I’m a writer for God’s sake. The fewer words the better.
(Does not apply to my Straight Dope posts, obviously.)
Yeah, but I’ve still got my own opinions.
I agree there are limitations and that it gets messy, but it doesn’t make sense to throw these distinctions out entirely IF we can show persuasive evidence that population X is helped most by intervention A and then population Y is helped most by intervention B. It would stand to reason, wouldn’t it, that the populations are characteristically different?
I’m going to start a thread soon on Bullshit Therapies starting with a current sacred cow in trauma therapy: Bessel Van Der Kolk. It’s easy to say “well the research isn’t all that useful” (apologies if that’s not what you’re trying to say) but Van Der Kolk is an example of what happens when pseudoscientists dominate the mental health narrative. It’s either this - we define it as best we can and try to study it - or it’s made up bullshit by Van Der Kolk et al. that is often actively harmful. I’ve never seen a middle ground. Maybe there is a middle ground.
Some of this speaks to the backlash against pathologizing any mental health disorder at all (or neurodevelopmental disorder in the case of autism/ADHD.) I get that we want people to be accepted and not treated like total freaks but I do think pathology is a valid paradigm for a lot of mental health issues. Somebody recently called Internal Family Systems Therapy “the only therapy that doesn’t pathologize Dissociative Identity Disorder” and my God, if you can’t pathologize habitual dissociation (or whatever DID is) what on earth can you pathologize?
That said I don’t think pathology is a good framework for either autism or ADHD. It is a brain difference. One that can be a disability.
I meant to respond to this earlier. I find it heartbreaking and I’m really sorry you’re feeling this way.
I don’t want my son to feel this way but I don’t want to sugar coat the reality either. He knows he’s different, he’s trying to understand it. We celebrate Autistic Pride Day every year with him, nothing crazy, we just give him a gift related to his special interest. I didn’t want his first experience with this label to be something negative. And I didn’t want him to think we were ever anything but proud of him.
Because autism is a part of him, not like something that can be cured or extracted, it’s impossible for me to think that it’s fundamentally something bad. Something that brings challenges, for sure, but if it’s necessary for him to exist then it can’t be bad.
But I’m not going to dictate to another person how they feel about their disorder. I am going to ask you to consider that some things about you are great, actually, and that it had to be this way in order for those great things to exist.
It’s a bit of an existential conundrum because we don’t actually know how much of ourselves is the disorder. Any time I wish I didn’t have ADHD I have to temper that with “But what would I be giving up?”
As a fellow functional-masker, your description is me exactly. I’ll add that in my case, I’ve “lost the mask” a few times when I get held socially “hostage”, such as being a passenger to a party and being dependent on the means to escape, I’ve slipped into being a belligerent asshole to anyone near me as a defense mechanism to create isolation space for myself. I mostly cope by planning any social engagement with multiple personal escape routes (own car, train schedule, committment excuses) as if I’m planning a diamond heist. Fortunately my wife is supportive, so if I insist on arriving late and bringing my own car, she generally supports.
My husband belongs to a very large family. Like, if you swing by the house of anyone he’s related to the odds are good there are ten other people there. A last minute get together is 20 people. And actual planned events at least 100 people.
There are so many of them they get married all the time and that’s 400-500 people.
I like many of his family members but it’s sensory hell. I don’t think he realized until very recently that my issue is not just introversion. It’s physically painful to stand in a noisy room.
The next wedding is in August (I think) and he said to me, “How about you plan to watch Wee Weasel and I can go by myself and say we didn’t find a babysitter?”
Fine by me.
Now we had a birthday party over the weekend that turned out nicely. I sat in the shade with the rest of the introverts outdoors while everyone else was inside. I went in for cake and ice cream but noped right out of there pretty quickly.
Thank you for that. Luckily, and in general, I actually don’t feel that way all the time. But a weird subconscious thing bubbled up out of nowhere a month and a half ago which has triggered a bunch of stuff from the regret pile. It was a completely unexpected thing, the strength and power of which totally blew me away, to the extent that had it happened before the existence of science (especially psychological), I would have attributed it to something supernatural (eg instructions from the gods or Satan or something of that ilk). But it hit bloody hard and I devoted two therapy sessions crying my eyes out describing it. Prior to that, I was getting close to reconciling myself with my “wasted” emotional past. Now it’s back.
Had I been diagnosed forty years earlier, though I wouldn’t have thought of it as a “superpower”, I could have managed it to the extent that I would probably had much more enjoyable personal life.
And also, regarding remarks by others regarding level 1s judging levels 2 and 3 people, I certainly don’t judge; I just consider myself bloody fortunate.
And to be fair I suspect @BigT is completely innocently ignorant of it. Her lived experience of autistic people is likely dominated by the online “autistic advocacy” groups, which in turn has a dramatic underrepresentation of … OG people with autism.
The diagnostic space of the label has been an expanding sphere, and thing about spheres is that a small increase in the radius really increases the volume of those near the fuzzy edge. And this significant volume of people at the farther points of the sphere are the ones most likely to glom onto “autism” as a defining aspect of their identify.
There are by that spherical nature, lots of them. Many of whom are of the “it’s my superpower” mindset. And really these are the people the OP is pitting, and that families of more those significantly impacted butt heads with.
Time is short so I will return when it permits to comment on many of your very important points.
You were diagnosed much later than me, but even after I was diagnosed at age 36 I really had a lot of grieving to do. I think that’s a pretty natural response.
Sometimes I feel like, “oh, what was even the point of diagnosis? I still have ADHD.” I asked my husband, though, what difference he thought it made, and he said, “I go way easier on you now that I know.”
So there’s that.
I feel for him though. And every time he’s had to repeat himself.
People need a place where they don’t have to mask and I think home is the most obvious and natural place to start. So in a professional setting if I’ve missed a point, I’m more likely to bullshit my way through it (it seems like the more important the thing is, the more likely I am to spin away.) At home though, I will straight up admit I wasn’t paying attention. And he doesn’t take it personally.
And for my son, I don’t need him to do all the nicey nicey stuff you inevitably have to do in polite company. If he needs to turn his back and stare at the wall while he eats, fine. I try to police him as little as possible, though I get testy when he doesn’t say please and thank you. Maybe I need to lay off.
What I’m trying to avoid though is scenarios like last weekend, where his great-grandmother presented him with a golden crucifix (they are hella Catholic.) I am certain my son, child of heathens, had no idea what it was. He said to her, very loudly, “I don’t like this. When am I going to get the cool thing?”
Because his Dad had told him secretly that if he didn’t like it that he would buy him something cool later, but neglected to say, “but don’t say how you really feel in front of Grandma.”
One thing about that kid is you never have to guess what he really thinks. That’s a double-edged sword right there.
I ran across a study (I have to dig up) that said genetic markers for autism are now weaker indicators of an autism diagnosis than they were prior to the revision of the diagnosis.
I’m not going so far to say it’s over diagnosed, because I’m not sure on that point. But if genetic factors become a weaker predictor of autism, that’s worth paying attention to, and figuring out what it means.