I'm not really sure where to put this thread, seeing as I'm an outsider asking a question, but feel free to move it to where you think it belongs if you're a mod. I was reading some discourse recently and I realised that I have holes in my knowledge relating to some things about autism. I was hesitant about asking here because I worry that my ignorance might result in my causing some significant offense, but I figured that it was more sensible to investigate rather than leave this hanging and maybe inadvertently causing damage in the future by not knowing about this stuff. I guess I should warn in advance at the possibility of me accidentally being awful, but if I am, keep in mind that I'm coming from a genuine position of not really being involved in the issues and that I am actively seeking to potentially be set straight. I considered just doing some general internet research but I feel like many articles I might come across would not be representative of the feelings and experiences of the actual autistic community. Seeing as many people here are autistic, this forum seemed like the best place to ask. My question is not so much about autism itself but rather about how it is viewed in terms of characterizing the demographic, the nature of the label, and how that applies to research in the medical field. Conventionally, autism is seen as a disorder, and of course nominally it is, because part of the definition of the term is that it somebody who is autistic may have difficulties with certain types of mental processes where a neurotypical person would not. However, in the dialogue I was reading, somebody seemed to be asserting that the autistic demographic should be seen more as a different sort of minority group, almost as if, for lack of a better word, autistics should be seen as a "race" of sorts? Arguing that characterizing autism as a disease leads to inevitable harmful attempts to "fix" autistics, which is obviously not what is wanted. Clearly, the autistic people who exist in the world at the moment are as they are, and instead society should change to be more accepting and accommodating of autistics. However, the second point that came up, and the one that I am picking over with more curiosity, was an argument they were making that any attempt to develop a technique to detect signs of autism in the womb, or even in genetic code - and any research in this area - was geared to prevent the birth of future autistic people, and was, therefore, to be considered a form of genocide. I am confused as to how I should feel about this. I feel like, even with a complete overhaul of the attitude of society, autism is always going to be a cause of strife in anyone diagnosed with the condition. Even in a perfect society, which was fully accepting and accommodating, things like sensory overload are surely always going to be an issue. Given this, it might be justified, then, to say that a person born with autism might have a predisposition to have a more negative quality of life than a neurotypical person. Given that, before a birth, any child is only a potential child - would allowing parents to select not to have children with autism simply be a way of reducing the pain that their potential child would have to deal with in life? Or would it be a callous culling of diversity, a form of genocide? My general opinion on similar matters in the past has been, "leave the decision to the parents", but is even the development of that capability harmful? A blessing or a curse? All medical articles I read on this matter seem like they're likely to be biased. I am essentially asking you what my opinion should be on this because I am very unclear about it. Again, I'm really sorry if this was ignorant or offensive or triggering - I don't want to be any of these things, and that's why I'm asking! Thanks. (By the way, is the correct noun for somebody with autism "an autistic" or "an autist"? My brain is telling me it should be the latter but I've never seen it used as far as I can recall!)
Just at a glance, I think one of the pieces you're missing here is that autistic traits aren't solely negative, and the negatives aren't necessarily so overwhelming as to make life less worth living in a genuinely accommodating society. Like your sensory overload example - I get sensory overload pretty badly and have to be careful I don't get overwhelmed, and even with care I often have to spend time recovering from experiences, but that sensory sensitivity also means I experience many things in a deep, full way I wouldn't want to give up. It's a tradeoff, basically.
Speaking as an autistic that is severely affected by being autistic - it is a disorder that has benefits. I am severely disabled - I cannot be trusted alone at any time because I may do things that could hurt me. Some of the time the reasons are that I will be thinking of how to solve a problem to the point of not being aware that I am about to walk off a cliff. Other times it is because I saw a butterfly and forgot I was walking along a cliff when I went to follow it because it was pretty. I'm also a highly paid software engineer because I can look at code and see the flaws in it. I can turn a requirements document into code in about 1/5 the time a not-autistic can, and the code will be safe to run and will do what the specification says (not always what was wanted, but that's a different matter). The companies that hire me pay a high price, since they have to make sure I have complete supervision every minute of my presence in their offices. I get more out of life than most of the coworkers I know because to me the feeling of grass under my feet is always exciting even though I live in a forest and feel it every day. There is no day when I do not have hours of joy just from touching things with my toes. I suffer a lot because people think bright, flashy light is a good thing. My brain can't handle it. I suffer a lot more because people think that mouth-to-ear is the only form of communication and actively try to prevent my speech-to-text/text-to-speech tools from working while also refusing to learn any form of sign language. As for eugenics - think about that from your own moral standpoint. Consider that somewhere around 90% of the fetuses determined to be at risk of Down Syndrome are aborted, many without consultation with the parents, but fewer than 10% of those who were allowed to live regret being born. If the only argument is "productive" - I am in the upper 5% income bracket this year. How many not-autistic babies should be aborted to compensate? EDIT: http://lysikan.tumblr.com/tagged/lysik'an-babbles for my babbles about what it is to be "severely autistic". :)
Well, I don't know about Down's syndrome (are there upsides to Down's syndrome? I've certainly never heard of any but could just not be informed edit: but, hmm, are there any real downsides outside of intolerance from society? I need to learn more about what Down's really involves), but that makes a lot of sense. I hadn't really considered that autism also has upsides, and potentially significant ones, I guess, which in retrospect feels like sort of an obvious thing to have missed.
I don't know if there "upsides" to Down Syndrome, but since Madeleine Kahn is a successful model and not unhappy with her life, I'd say it's not always a bad thing. It depends a lot on what you consider "upsides" - a happy life? Then yeah, there are upsides to being Down Syndrome - you can have a happy life, as the majority of Down Syndrome people who were allowed to live will tell you. "Productivity" - that's a rather shallow value to put on human life. I can program a robot to replace you in anything other than the arts that will do a better job than you do, cheaper. I don't know if there are any Down Syndrome artists - they don't generally add that diagnosis to their poetry or paintings or stories. I write a lot - some of it has been said to be really fun porn, some has been complimented on its imagery and world building. I make CGI pictures (I don't have enough control of my hands to paint/draw) that people like - such as my icon. The problem I have with this whole thing I think is it is trying to place "value" on "people" and that just doesn't work. How would you fare if you were compared against me? When I was your age I was taking care of three children for a mother who had uncontrolled clonic-tonic (grand mal in old speak) seizures while their father was having his leg bones replaced with titanium even though I could not talk to them and they could not talk to me since we didn't have text-to-speech/speech-to-text then and I hadn't learned sign and neither had they. I wrote on a chalkboard to talk to 6&7 year old kids to make them do what they should. Does that make me worth more than you? Does it make my life more valuable? There are no "upsides" and "downsides" - there is just life. There is a person who is not currently active on this site who is really intelligent but cannot control their reactions to some triggers and hurts people. At times they are certain they have no upsides - and this "valuing" reinforces that bad feeling. See this: http://lysikan.tumblr.com/post/134518939500/always-a-kid and this http://lysikan.tumblr.com/post/89421849775/a-non-verbals-thoughts It is about life. Yeah - life can suck for some people with issues like Down Syndrome or Autism. Their lives can also be good. And their "value" is that they are people. Would I be happier if I didn't need 24/7 care? I don't know - Donald Trump is a bitter, angry old man and doesn't seem to be autistic. I'm not bitter and my angries last only short times, not as many years as his.
The whole quality of life for autistics thing tends to be... hm, how to put. The people who fret about it most don't seem to be autistic and don't seem to have worked to understand the point of view of autistics; they seem to be conceiving of it as, "if I suddenly had to deal with those things it would be awful and I wouldn't be able to stand it, I much prefer the way I am now." It strikes me as (kind of hilariously given how non-autistics like to harp on autistic empathy or lack thereof) a failure of empathy on their part. Never mind that one of the biggest quality of life issues for autistics is hostility from society.
I'm not sure why we're talking about productivity - I never mentioned that! I don't believe that people have value defined by productivity - all people have value regardless, and diversity itself has its own value. My concern was regarding pain and strife caused by disorders, and whether not it would be a bad thing if parents could opt their child out of that. What you've pointed out, however, is that some disorders have upsides and aren't necessarily characterised by more strife/pain, at least not inherently.
@Mercury brought up a part I think is missed a lot. My life doesn't suck because I "miss being able to do X" - because I never was able to do X. I am not missing anything. I don't "miss out" on the things I can't do - I never could do them. The experience is foreign to me, not a loss. Most of the pain in my life has come from people being intentionally in my way - people who pretend they can't read to make fun of the fact that I can't speak, people who pretend they can't understand my computer's voice, etc The pain of being disabled (at least for autism) is mostly social. People are bullies. Everyone I have dealt with in the near 30 years of going to a clinic for autistics (I didn't go as a small child - girls can't be autistic!) have not suffered from being autistic, they have suffered from either a) not-autistics abusing them or b) not suffered at all but not-autistics assume they suffered because they "weren't normal". Which correlates well with my lived experience. The "pain" of being autistic is imposed from the outside, not an intrinsic condition.
Excellently put. I entirely agree. Edit: I suppose even with things like sensory overload, the issue is society forcing autistics to deal with situations that cause it?
Not always - lightning happens :D But even not-autistics have issues with some things. And they don't get the erotic joy of walking from concrete to grass to rough wood deck to smooth hardwood floor and ... erm, anyway ... the sensory thing is often balanced :)
For me it's more like, other people acting like autistics don't/shouldn't need recovery time once we are overloaded is the problem. When people around me understand I can do various things so long as I can leave or zone out when I start feeling overloaded, and have time and space to recover afterward, it's not any more a big deal than any other non-autism related issue I might have is.
Ah, see, that's what I meant initially with regards to upsides and downsides. Sorry I was unclear! But yes, I think I definitely understand with issue a lot more clearly now. Also, with relation to the first point the guy I was reading made... I suppose characterising something as a disorder is different to calling it a disease. And one does not necessarily mean the other applies.
I don't have that because of being so obviously nuts. The worst I have is people doing things like ignoring the "no talking" signs around my office area ("I wasn't talking, I was having a conversation on my phone!") and other stupid "ignore the rules and then wonder why the little girl is trying to smash her head through a wall". Once it happens they suddenly remember and vacate the area.
Chiming in to bring up executive functioning issues, because for me at least those are one of the downsides of being autistic. But even then, i think they can made into a bigger deal by lack of support, or by comparing ourselves to the vast majority of people who have no problem with exec. functioning. Trying to measure up to NT standards can take something inconvenient like having issues taking showers, and make you feel ashamed because that's not supposed to be difficult. And then that probably makes it harder to ask for supports because you don't want to need help, you're supposed to be able to just do it. So, like, yeah I can get tied in knots thinking i'm too slow to get hired at anything, but that's not necessarily directly caused by being autistic. But yeah thanks for making this thread to ask these questions!
I'm not even allowed in a bathroom alone - too many hard surfaces and prior evidence of my tendency to hit my head on such :)
@Ery Thrismal I think I always expect support - family does that - in spite of knowing sometimes family doesn't. They always did for me and even seeing an example of where they don't it just never clicks in my head that it happens.
Seconding this! @BlackholeKG it's cool you decided to get information from the source, as it were - so many people just. Won't.
Thirded. I am not a nice person when I feel someone is asking me to validate my existence (which is how I took the opener) but you showed you were willing to handle that and turn it into a conversation. Kudos.
@BlackholeKG fwiw I had a lot of the same questions and a lot of posts I saw on the subject jumped straight to genocide and "you want us all dead" which was pretty confusing to me! @Lissa Lysik'an and seebs were the first people who explained it in a way that made sense to me. Thank you for that!
