I pit the belief system that says that autism isn't bad

The BBQ Pit
21

I feel like this one is a continuum, like so many others. At one end – the evil end – is stigma, degradation, intolerance, insensitivity, judgment, and derision.

At the other end may very well be “celebrating” that which … maybe shouldn’t be celebrated.

The pendulum so often swings from extreme to extreme, hopefully eventually finding a ‘proper’ balance. Meanwhile, the swings can be oh-so consequential.

@velomont I’m sorry for all that you’ve endured, for your struggle to find answers, and for the grieving that – inevitably and totally understandably – has resulted.

None of this is easy, and – whether or not we wish it weren’t so – how society, those around us, Medicine, and the world around us responds … is in the mix.

22

It’s “If you meet one person with autism, you’ve met one person with autism.”

23

One major issue is the nosology. “Autism” is a label; a set of shared phenotypic characteristics, not a single condition; beyond its being a spectrum. We are, for lack of a better approach, lumping diverse groups in terms of specifics, both qualitatively and and quantitatively, under one umbrella. The levels of support needed doesn’t even scratch the surface of the variety lumped inside.

The basic concept of neurodiversity is wonderful, but I suspect the truly neurotypical individual is the mythological creature. Yes some who meet the criteria for the label of level one autism can have the features that qualify them be of benefit. And of difficulty. At the same time. To different degrees in different circumstances.

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For the record, most autistic people don’t tend to like the “people first” language, and actually prefer “autistic person,” for reasons similar to what I articulated above. Being autistic is to some degree part of their identity, and not something that could be somehow completely removed.

26

My son is Level 2 support needs autistic.

He is six. He asked his father the other day if he will have a disability for the rest of his life.

We told him that he will be autistic for the rest of his life, but that whether he has a disability or not will be for him to judge, and that it could feel different at different times. We also told him that some people view it as a disability and others as a difference, and that his father and I see it as somewhere in the middle.

He has some pretty significant issues, difficulty regulating emotions that leads to screaming and hitting, to the extent that we’re taking him out of public school. He will be attending a school specifically for neurodiverse children where all staff have extensive training. We recently learned that he has a sleep disorder that probably contributes to the behavioral issues. We are addressing that this month with tonsillectomy/adenoidectomy (which comes with its own challenges - due to his feeding disorder I expect him to eat nothing after the surgery, so now I have to worry about whether I’m going to have to take my kid into the ER at some point after surgery because he won’t eat popsicles or ice cream or smoothies or anything you’re supposed to eat.)

My son feels everything very deeply and is a real sweetheart, but he often lacks the ability to communicate his empathy (at least in the neurotypical way) so not everyone gets how deeply he loves. He might totally ignore his cousins by all appearances during a birthday party, but then later ask why So-and-so wasn’t there.

He also frequently comes off as rude because he doesn’t understand how his words and tone of voice impact people. He’s so smart that he thinks he has a right to understand everything, right now, without delay. He can’t stand to wait for anything. He can’t stand when things don’t go exactly his way. And since everything usually comes easy to him, he often gives up at the slightest bit of resistance.

His capacity to understand mathematics boggles my mind. He easily grasped square numbers, square roots and negative numbers at age three. I taught him binary numbers when he was four. It took him just three examples to learn pretty much immediately. He constantly plays around with numbers and calculations to identify patterns. If he were not autistic, I’m pretty sure he would love math, but the autistic level of obsession means he is always advancing his understanding.

He also has severe ADHD and additional executive function issues due to the sleep disorder.

He’s having a rough time and I don’t know if he’s always going to have a rough time, but we’re trying to teach him all the skills and tools we can to make it easier to get by in a neurotypical world.

I’m firmly of the view that my son has a disability. I’m trying not to make it a self-fulfilling prophecy that he will always have a disability. But right now there’s no other way I can look at it.

I do think he’s extraordinary and the best thing that ever happened to me, and I wouldn’t want him to be a different person. I want him to have fewer difficulties but I also know it comes with the territory of who he is.

I have diagnosed ADHD and have questioned whether I am also autistic. I even went for an evaluation once but had to stop in the middle of the evaluation when the therapist was clearly incompetent. She didn’t know how to properly use the diagnostic tools and she kept bringing up my trauma, as psychodynamic therapists tend to do, which inevitably made me feel worse. So I quit.

And maybe I never get the answer.

I’ve seen ADHD proclaimed as a superpower where I can see my own ADHD as nothing else than an obvious cognitive deficit. It does probably make me more creative, which is nice, and I can spend hours and hours hyperfixated on a task, which is also nice, but I feel like an idiot at least five times a day, which is not nice (today, for example, I dropped my son off at camp and realized I was still wearing my slippers, so I had to go home and put on real shoes before work.) I feel overwhelmed every day of my life. I manage to accomplish tasks mainly through constant hypervigilance. I always excelled in school and I always felt stupid around my high-achieving peers even when I was out-performing them. I always felt like they had some secret that allowed them to just live the lives they wanted to live. And when I was 36 I learned why I felt this way, and huge parts of my life made a lot more sense.

27

I’m probably neurodivergent. Most likely ADHD, maybe some autism. I was never diagnosed and I’m old enough that my life is pretty set (I’m almost 50), so if I ever got tested it would just be for the sake of curiosity. I was different enough that a lot of my teachers had concerns about me; my second grade teacher was sure I had epilepsy (apparently because her son did). I mostly remember being bored in school all the time and never fitting in with other kids, though my grades were always very good.

When I went into 7th grade, it was a new school and I saw it as a new chance to be different socially. I made a deliberate effort to be “normal” and it worked. I related with people well and that has carried over through the rest of my life. I pretty much just observed how people acted and imitated them. I’ve always been pretty good at imitations (including the ability to do impressions and mimic voices) so it wasn’t hard for me. Over the years, I think I “faked it” enough that it became real, and if people meet me in-person, I tend to get along with everyone easily and smoothly. I do sometimes (unconsciously) mimic people, in subtle ways, and I recognize it, but I think it’s subtle enough that nobody has called me on it.

I can say for sure that it hasn’t always been easy, and it especially was hard for the earlier years of my life. But I learned to cope with it, and I clearly don’t have it anywhere near as bad as most people. I’m sure my diagnosis of whatever would be the “Level 1” since it hasn’t had too much of an impact on my adult life at least, and I have been on my own having to take care of myself with little support from anyone (including parents) since a relatively young age (19) and turned out okay.

My daughter was diagnosed with ADHD and she has her struggles, though unlike me they affect her grades quite a bit. She has medicine to help her out, and it does help. It doesn’t affect her ability to be social though; she is the most social person I’ve ever seen, and people tend to flock around her in and out of school. She is also the only person I’ve ever known who has zero stage fright, though it probably helps that she has been performing on stage as a dancer since she was 3 years old.

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Sometimes I do think it’s weird how someone can be “quirky” and carry the same diagnosis as someone who can’t speak or live independently. This has created a lot of friction in the community among persons of different support levels, as people at all different levels are fighting for the same resources. Clearly Level 3 individuals and their parents should have the most priority. But some Level 1 autistics have actually downplayed the needs of Level 3s. And frankly, in the public dialogue, Level 2s are treated like they don’t exist. I’ve only once seen a Level 2-ish autistic character reflected in the media, and that was the flawed, maudlin The Good Doctor which caused Level 1 autistics (on Reddit, anyway) to have a collective meltdown because it didn’t reflect their lived experience.

But for me it was the closest thing I’ve seen to my son. You’ve got someone who is of a cheerful affect, highly verbal, with high intelligence, who has significant difficulties with sensory stimulation, social reciprocity and emotional regulation who can only reach his full potential with accommodations. The show even addressed the sort of coming of age process where the caregiver has to let go of the kid while the kid is simultaneously rejecting the idea that they need any help at all, while they clearly do.

But because it was a depiction of a real disability rather than a neat little quirk people can feel good about, a lot of people rejected it.

Also because it’s corny.

But we take what we can get.

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My view of autism is very much shaped by my experience with people who have mental disorders like anxiety or depression. Perhaps that makes me automatically view autism as a disorder instead of a superpower.

The bottom line is people I’ve known who go in and out of severe depression or anxiety episodes and into remission are still the same people regardless of where they are on the range of “normal” to disordered. They still have the same personality, they just aren’t freaking out about a bunch of stupid shit[1] when the disorder is managed. Or to put it another way, it’s not your depression that gives you a snarky and cynical attitude, it’s your depression that keeps you from going out where your friends can appreciate your snarky comments.

I view autism in a similar way. If my kid was not on the spectrum, I suspect they would still be smart, artistic, and funny (and aggravating, and stupid, and self destructive). To bring up a current example, my non-autism hypothetical kid might still be a big fan of Voltron, but would be able to hold conversations about other things. My non-hypothetical autism kid behaves as if they are always in the Voltron room at a con, and that everyone around them is there to talk about Voltron. The deeper cuts the better. (Previously it’s been LoTR, Star Trek, Cookie Run Kingdom, Transformers, Wings of Fire, and I’m sure more.)

I’m self aware enough to know I’m blaming autism for the bad things (missed social queues, obsessive topic focus, poor emotional regulation, low perseverance, short temper, egocentric bias, etc.), and not giving it credit for any good things it may bring. There are lots of smart and artistic people who do not have autism. Why should I give autism any credit for bringing those traits to my kid?

I think my kid is a fan of the “autism is my superpower” idea, though.

  1. to completely belittle the experience of anxiety ↩︎

30

I have a lot of mixed feelings about… so many things.

First, the thing I don’t have mixed feelings about, and which I’ve said before: I really, really dislike what the powers that be did by giving the same diagnosis of “autism” to people who present very differently. My kid and @China_Guy 's kid have/had very different support levels, very different presentations, and I would go so far as to say that I believe different underlying issues as well. But there’s not much I can do about that.

Mixed feelings time: I suspect I am mildly ND, though in my case probably autism and not ADHD. Never diagnosed, especially as I grew up in an era where girls just weren’t. I had fairly big issues with socialization as a kid. But eventually, like @Atamasama , I got to the point where I studied how other people acted and mimicked them. (I still do this.) While I don’t consider my intellect an autism superpower, I do consider the ability to figure out that I needed to study other people and then doing so something of a superpower, and one that arose out of being ND (I don’t think NT people really do this). On the other hand, of course, if I hadn’t been ND I wouldn’t have had to do it in the first place, so in that sense can it really be?

My kid, who is diagnosed, is extremely logical and hates being wrong or illogical, and I actually think the root of both her logician superpowers (which really do seem to be superpowers) and her emotional/social disabilities (which really do seem like disabilities) is similar: she haaaates being wrong. But she’s sort of a weird special case. Certainly not everyone has those superpowers. The other diagnosed kids we know around here are mostly not particularly good at logic/math.

So yeah, I think that for some people, especially those who need less support and who might have already been operating at a reasonably high intellectual level, it can process as a superpower, but for others (maybe most?) it isn’t particularly.

For the same reason I kind of side-eye the tendency these days to do “strength-based” vs “deficit-based” ND thinking. I mean, yeah, sure, I agree that it’s good to keep in mind everyone’s strengths, and certainly we have tried to nurture our kid’s strengths. But deficits really are deficits! You can rail all you like about living in a NT world but we do, actually, live in world that is mostly NT by definition, even non-NT people absorb some of the NT cues, and those of us who aren’t NT have to learn how to live in it! I feel it’s like learning a musical instrument or a sport: you should celebrate and lean into the stuff you’re doing right, but you should also practice the stuff you’re doing wrong!

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One thing that I have to stress is that, as a level 1 who has, for the most part led a normal life, I know that I have had it really good. My wife and I live in a fairly high-end apartment building behind which is a bunch of public housing. If I was lower functioning/higher level, I could be living in that public housing and collecting empty beer cans to supplement my income (as a few of the folks behind us actually do). So, to many of the parents of autistic children, and to autistic posters upthread, you genuinely have my sympathies. I also recognize that, as a reasonably well-off first-worlder, I am in a privileged position to be able to moan and drip about my emotional life.

Having said that, however, I still resent the efforts of TPTB to “happy-fy” and “magicify” autism. I’ve seen articles and commentaries about how autistic folk should not have to mask which, in my opinion is a bunch of crap. In my last job, in which I was in meetings with clients like Lockheed Martin, Airbus, or the Royal Canadian Air Force, I’m sorry - I masked to the greatest extent possible so that I would keep my job. Otherwise I wouldn’t be living in my current apartment. And if I don’t mask, and I often didn’t, then the rest of the world has to put up with my annoying, inappropriate remarks and bad jokes, and that’s certainly not right.

For the most part, I’m fairly happy, though I’m going through a weird and powerful subconscious and emotional episode right now that is resurrecting all sorts of nostalgic regrets.

32

I thought that was kleptomania.

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Is that a stolen joke?

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My immediately previous GF, and still close platonic friend, is going through this now with her level 2 and intellectually disabled 24yo. She’s been his de facto mother since the kid’s birth by a now-estranged relative.

The kid’s a legal adult. Doesn’t quite qualify for a guardianship. But he’s a 10yo in some parts of his mind and a 24 yo in others. Sweet, trusting, impulsive, and oblivious to the complicated risks inherent in being an adult. Totally safe to cross the street and get a simple undemanding job. Not really safe to handle money or relationships. Imagine a terminally horny 8yo and you have some idea of the problems.

He’s decided he’s ready to leave the nest and has jumped out and is flapping like mad. We’ll see what happens, but it’s the kind of thing you have to watch between your fingers while covering your eyes.

Yikes!

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It’s also like, my kid will probably never be able to mask. That’s not a choice he even gets.

I’m pretty privileged myself, on multiple levels. We’ve had access to a tremendous number of resources to help my son that most people don’t get.

As for me, I mask ADHD pretty damned well. Most people would not guess I have it. It takes a lot of effort.

I don’t know what caused my social thing, but my thing is that I understand perfectly well how people interact but I’ve never been able to do it. I mean sure if you sit me next to an extravert I can follow along and be a good companion. But the fancy social stuff, it’s just not a skill I have. I’m particularly challenged in groups.

When I am in a position where I’m not sure how to do the thing, like meeting a stranger, I come across as aloof, or, as one friend put it, “hard to read.” I’ve had people tell me they thought I hated them and the reality is just that I wasn’t sure how to enter into that relationship.

Once I’m comfortable with someone, though, I’m almost like a different person. The best way I’ve found to meet new people is to approach them when they’re in a group of people I already know. That way I am more likely to be myself without so much pressure.

I also can’t hide how I feel about things, which sucks because diplomacy matters in many cases. I often have to choose between saying nothing and saying how I feel, because what I feel is so intense I cannot find the ability to soften it. I’ve seen so many examples of tactful workplace conflict resolution and I still don’t know how to do it.

But it’s very difficult to tease apart the effects of early childhood trauma (including the missed social development of moving to a new school every year), ADHD (which includes its own social challenges), social anxiety, and autism (which is notoriously difficult to diagnose accurately in women, especially women with social anxiety.) So it might actually be impossible for me to know for sure.

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First off I am not so sure about that confident “most” even if it is most in your circles and your experience.

My WAG is that it is “most” in a specific set of individuals who are both higher functioning and getting labeled as young adults or later, a population that never would have been labeled as having any form of autism twenty years ago. These are, in my experience, the folk eager to define their identity as that label. For various reasons.

The people who would have been labeled as having the diagnosis of autism before the broad expansion of the spectrum are not especially caring if they are referred to as a person with autism or an autistic individual, no more than I care if someone references me as a short person, or a person who is short, or an asthmatic person or a person with asthma.

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When I read about autism, I often identify with the symptoms.

I was in the “gifted” classes in school, but I had a lifelong struggle with depression; I’ll become physically unable to perform tasks when I go through a depressive episode. I’m sure I never performed at my potential.

I’ll value solitude, and have always gotten along better with animals than people.

I struggle with insecurity and intrusive thoughts, and I’m very observant of other people’s actions in search of clues about their thinking.

I love, and need, order and structure (it’s why I enjoy the extreme regimentation of bodybuilding, such as eating the same thing every day). I prefer an OCD level of organization (right now my office and my apartment are clean and organized and I’m loving it), but I struggle with episodes of slovenliness.

But then I learned that childhood PTSD can also cause symptoms that can look like autism. I was sexually battered around age 4 (by a neighbor) around the same time my parents split up and my dad cut off contact. It had an indelible effect on my life, and I didn’t even begin to make the connections until I was an adult.

So I can certainly empathize with those feeling out of sort, embarrassed, or panicked because of a malfunctioning brain. And I’m not entirely neurotypical. But I can read social clues, I don’t have sensory issues, and I’m not autistic.

But my weird brain presents enough of a challenge that I wouldn’t wish autism on anybody if it’s even remotely similar. I frequently think that another person, given the same opportunities as me, would have done much more than I have done. I’m my own worst enemy.

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You’re an optimist. The evil end is extermination. People who say autistic people have no souls, and are worthless consumers of resources (and there are people in high office who claim that) are working toward that end, whether they know it or not.

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RFK Jr said so explicitly. (Maybe not the no souls part, but the rest of it.)

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I think that a lot too. I have ADHD (etc.) I think that a lot of people probably feel that way.

My son has asked us repeatedly if we are autistic. I don’t know how much it bothers him that we don’t know. He also asked for confirmation that I have ADHD. I can at least give him that. He was diagnosed as innatentive type like me. He exhibits hyperactive behavior sometimes but the neuropsych interpreted this as a symptom of his other executive function challenges rather than true hyperactivity.

My ADHD used to be a lot easier to mask but this is something that tends to get a lot worse with perimenopausal and menopausal women, so I think it’s become more obvious.

It’s interesting that he has sleep apnea like me too, because the only significant thing I noticed when I got a CPAP is my executive function improved considerably.

And I’ve heard level 1 autistic people describe level 3 autistic people in this way!