The reason I asked the weather/cancer conversation question was because I’ve had that discussion before and it seems like a lot of my friends would rather have serious emotional conversations with strangers than small talk. For me, I think this is because a conversation about an intense topic with a stranger is a place where you can engage with other people’s feelings and say how you feel directly. It seems like an actual engagement with another person rather than a maze that you have to navigate to avoid creating problems.
It’s something that I think it’s hard for a lot of people to grasp. If you say, “Imagine how uncomfortable you’d feel if a stranger on transit started talking to you about their cancer diagnosis, or their divorce, or another intense emotional contact. Now realize that I feel considerably more uncomfortable than that negotiating small talk.” Because it’s not that I find conversations about intense bad things to be enjoyable, it’s just that they are considerably more tolerable than a conversation where I feel like all I’m there to do is play someone else’s game without knowing the rules.
I saw a standup comedian once say that if you have depression, people really don’t understand, they just feel weird about it, but if you have diarrhea people are sympathetic. Depression is a lot worse than diarrhea. People don’t kill themselves to avoid further diarrhea.
It would be nice if people could understand how difficult things they take for granted can be. Sometimes analogies can help, but most of the time anyone who is really receptive to analogies is already listening. It’s the mass of people who are in the comfortable privilege-means-not-knowing-what-privilege-is zone that are important to reach and can’t be reached.
Since I’m hearing a lot about not wanting to be cured, I have another question.
What if an autistic or Aspie sees this condition only as a source of pain, really wishes he or she were neurotypical, and would go to the ends of the earth, or crawl through sewers, to obtain a cure that really worked, with side effects that were, at most, a small price to pay?
Is such a desire immoral - a betrayal of one’s fellow autistics or Aspies? What about searching for a cure or offering one that really works, if one is ever discovered - is that immoral?
I can easily foresee that the answer to both questions will soon be yes, by analogy with homosexuality.
As for pride, I like the color of my eyes, but to be proud of my eye color would be ridiculous.
I don’t think it’s immoral at all, and in many cases it’s understandable. For some of those on the higher functioning end, it’s possible to see it as a difference and not necessarily an impediment (or at least, any impediments are fairly minor and can often have advantages too). On the other hand, some people do suffer from it significantly and are not able to live normal lives. If you’re always having sensory overload in normal situations with embarrassing and possibly dangerous results, it would be natural to want relief from that. It’s also not surprising that some people hate feeling cut off from others because they can’t understand body language or facial expressions. There can be a lot of internalised ableism. There is a very high incidence of depression and suicidal ideation among people with Aspergers, so not liking being autistic (or certain elements of it) is presumably pretty common.
I think some Aspies can push the pride and focus on difference rather than disability excessively when they have found ways to live independently - at my level, it isn’t very noticeable and it doesn’t stop me from enjoying my life. Emphasising this can be unhelpful for people who don’t have that level of functioning though - autism is very diverse and has many symptoms or traits that present to different degrees in different people, or not at all in others. It’s important for HFAs to remember that they don’t speak for everyone’s experience.
On the other hand… a cure for autism is impossible, and it isn’t a disease. One of the reasons that many autists object strongly to the very idea is the history of the attempts to find a cure. Autism Speaks is widely hated by autistic people and only ever had an actual autistic person in senior leadership for a short time. Very little of the money raised goes to actually supporting autistic people, and there’s a strong sense in which the cure has been seen as abortion. They often present autistic people as an undue burden on their families, and not well placed to represent themselves. They supported the centre that gave this “therapy” as recently as 2014:
This is an extreme case, but there is a long history of attempts to cure autism that quite understandably caused trauma. Apparently it’s better than it was, but ABA and other treatments are often aimed at making autistic people look normal, rather than meeting their needs.
Another reason that people object to this is related to the fact that autism is lifelong - a lot of things are possible for many autistic people to learn or do, but self-hatred is toxic and holds you back from progress. Accepting yourself with the parts that you can’t change is a valuable way to move on with your life, and it often turns out that some obstacles aren’t as insurmountable as they seemed (obsessing and catastrophising is fairly common). Before I knew it was autism, I just called it “Generalised Uselessness Disorder”, hated it and tried to get rid of it. It’s pointless though, and working with it is much more productive.
What I’m trying to tease out is the morality of a cure, or whatever it might be called, a change from autistic to neurotypical - just assuming for the sake of argument that one were possible.
Just as I’d like to tease out the morality of either offering or seeking a change in sexual orientation, assuming for the sake of argument that one were possible.
Yeah, I was told to be myself when I was a kid. I found the advice worse than useless, because “myself” was precisely what other people didn’t like.
Another bit of worse than useless advice is “the way to have a friend is to be a friend.” That always sounded to me like “the way to have a husband is to be a wife” (tell that to a single woman looking to get married) “Be a friend” is good advice for keeping friends, but not for making them.
“being diagnosed (even self-diagnosed) is a lot better than not knowing”
Amen. When Susan Boyle got her diagnosis, she was relieved because that explained what she’d gone through all her life. I knew exactly what she was talking about, because that was how I felt when I received my diagnosis.
The Judge Rotenberg facility is still being advertised on the local Clear Channel station! And now it’s being advertised to parents of autistics, not just those of “troubled teens.”
With all my heart I thank him/her who is to be thanked that my parents never sent me to one of those places. We don’t drug your children, we torture 'em.
Nevertheless, I don’t think they ever claimed to “cure autism,” just to turn your problem child into a non-problem child.
I have in my personal library two exposés of the troubled-teen industry. I bought them during their brief window of availability, before they became o.p. and very hard to get. At least one of them was favorably reviewed in the New York Times Book Review; I don’t remember how I found out about the other one.
Yeah, I have friends who were sent to “rehab” repeatedly. Every time they came back twitchier and making less sense. A lot of these places are person-killing mills in that they destroy people’s personality and being.
Now, don’t get me wrong. If you have a drug problem and don’t have anywhere to go, sometimes, SOMETIMES rehab is a good option.
But what I’m talking about are the “juvenile rehab” programs that seem to have sprouted up everywhere in the late 90s and early noughties. the ones that are either jesus camp disguised as medical care, or behavioral uniformity mills that switch pot smokers over to thorazine and worse so that they’ll all end up nice and zonked out and compliant for 4 weeks, and then hand the drugged up kids back to their parents to do the real detoxing on their own.
Another issue is how these labels affect us. They can give an idea of unchanging finality to people who actually change quite a bit, or give the idea that you’re either fully one thing or the other. Some people cling to these labels as important defining elements of who they are, while others resist them. I like a more descriptivist approach where a label can help you to understand yourself better and help others to see that you exist and have particular differences that need to be accounted for, but you have no moral obligation to follow a particular path based on it.
I think it’s interesting to look at how other HFAs have lived their lives, which gives me a more accurate picture of the consequences that my decisions could have (or why I might be inclined to make certain decisions while more allistic people might not).
Maybe rather than sexual orientation, how about FtM transgender individuals? This seems to ruffle some second wave feminists’ feathers and make things a bit less neat. I think if a cure for autism existed, it should be entirely your own choice whether to take it or not, and people who are proud of the autistic label shouldn’t see this as an attack in any way. Blocking your way for the sake of ideological purity would seem to be the immoral stance.
On the other hand, if there were a cure I can’t imagine the level of judgement on parents who decided not to give it to their children, or people who wanted to remain autistic with some limitations on their own lives and accommodations from others. I find it very hard to believe that the choice would be free.
Yep. For me it was almost a kind of ego death though, as nobody had been able to explain me before and suddenly I had an explanation that fit me almost too well.
I’m pretty sure that if they aren’t in prison, there are plenty of other organisations with similar correctional philosophies who are.
This is the thing that really bothers me about the talk of a cure - it’s often strongly tied to curing the trouble you cause to other people rather than improving personal well-being and functioning. Not that the needs of families of autistic people or those with other issues are not important (it can be a huge strain to have a dependent with developmental or other problems), but I don’t know how much of my personality would be left if the autism were taken away (not because it’s all of my personality, but because all of my personality is affected by it). On the other hand, I can imagine medication or other treatment helping to alleviate certain symptoms, like dulling your senses slightly to allow you to be more comfortable in certain environments.
I don’t know whether this has been mentioned before, but one of the differences that’s been noticed is that autistic children don’t go through the process of “pruning” synapses early on in their lives to the same extent that others do.
In my limited external experience, medication for autism doesn’t benefit the taker at all. It works for behavior, but doesn’t offer anything of value.
That’s where using ADHD as a guide falls down. For a kid with ADHD, in a lot of cases if you crush their personality for a little while it rebounds back, and they also get to be an excellent student and very good at learning and focus especially.
People I’ve known who’ve been treated with medication for autism never seem to be happy with it, and seem to me to be zonked out and sedated to the point where they can’t process sensory data just because their brains have been slowed down and that’s how hypersensitivity is treated.
Seems really unpleasant to me. Seems kind of like being on a lot of detromethorphan. Where you can “see”, but can’t make sense of the information coming in at all. Like super blur vision. Have I mentioned that detromethorphan is a wretched drug?
One of the odd things is that ADHD is a common comorbidity with autism, and it seems to be common to discover the autism after being treated for ADHD. I guess there are some traits that are common to both (e.g. hyperfocus and problems with working memory), while others compensate for each other to some extent. I suppose removing some of the ADHD traits makes it clearer that you aren’t nuerotypical in other ways too.
Speaking of drugs, this is what one guy with Aspergers looked like on 700ug of acid (TL;DW: surprisingly normal, externally at least):
I don’t know whether it’s typical, but whenever I’ve had any experience like this (alcohol, marijuana, medication etc.), I don’t seem to fully enter into the experience like others do. It’s almost like there’s a stable part of my brain watching the rest being affected by a situation or a substance (maybe others get it too, but they seemed to be out of it more than I was - I just go into hyper analytical mode and want to explore all of the effects that it’s having on me). This article resonates with me as a difference between my own experience and that of my brother, who probably has some kind of bipolar disorder.
I did my dissertation on “Managing Situational and Social Aggression in Low- and Moderate- Functioning Autistics.” (Yes, instant soporific.) About all medication does is control the symptoms at the expense of the patient. And there’s a tendency, especially when under the care of a PCP or family doctor, to over-medicate the patient into compliance. On the flip side, there’s a need to do that-- you can’t work on adjusting behaviors or teach methodology to a patient who’s uncontrollable, having spasms, or acting out.
And the medications are horrifying. I personally took one moderate dose of Risperdal (an anti-psychotic that’s one of the best drugs for the purpose) and it was awful. It turned me into a marshmallow. I couldn’t think, I couldn’t make decisions, I couldn’t remember anything-- and we’re doing this to autistics as a primary treatment! Worse yet, we’re adding things like Abilify that intentionally amplify those effects.
I think, assuming an actual cure (one that renders a fully-functioning neurodiverse person as a fully-functioning neurotypical person), that there should be no reason why someone shouldn’t take the cure, if it’s what they truly want and they give full (and fully informed) consent.
I think of my body as about equivalent to a fully-paid off house. I live there, I own the place fully; I should be able to remodel it however I see fit to make myself more comfortable within it (assuming that I don’t do something that will damage my neighbours’ houses, lower their property values, or render the place unfit to be lived in). There’s nothing immoral about tearing down a non-load-bearing wall to make an open-concept main floor, or putting up a wall as part of finishing your basement.
Similarly, I don’t think it can be immoral to change yourself to be closer to the person you want to be (unless the person you want to be is someone who is less moral than you are now). Just as no one should ever force you to change against your wishes, no one should ever force you not to change.
That said, a lot of the concepts I’ve mentioned, about informed consent, and willingness, and a “perfect” cure… It doesn’t sound like these are the things that are happening today when they try to “cure” neurodiversity, which is awful. But assuming a treatment which met those standards, I don’t think that anyone should be forced to live in a body (or a brain) which doesn’t suit them.
I ran into the same thing with my executive dysfunction when I had to temporarily move back in with my parents in my mid-20s (short version: mixed episode).
Their house has three floors + basement, which means four floors on which to misplace things. Once I reached a (somewhat) steady-state with my meds, I found I still rarely brushed my teeth. At first I thought I was still depressed, but after a while I realized it was environmental. So I proposed having a toothbrush and toothpaste stationed at every sink in the house. (In my experience, redundancy is a great strategy for the executive-challenged.)
That didn’t go over so well and we ended up having an argument in which they all but explicitly said why couldn’t I just be a normal person. The concept of ‘outcome-based measures’ just seemed to whoosh over their heads.
