This I do disagree with. In this context, “cure” usually means finding a fetal genetic test to allow selective termination. This makes a lot of autistic people very upset, understandably so. In general, my understanding is that autistics would rather have their condition accepted than fought.
This is not my position. Like I said upthread, I am less concerned about terminology than about what that terminology licenses. If our society were generally ok with disorders, then it would not really matter what we called it. The problem is when this leads, say, to juries sympathetic to parents who murder their autistic children. It’s not the term that devalues people; people devalue people.
It’s not so different, it is just more extreme and perhaps the stakes are higher. I had planned to be a very light touch parent, to be honest. What seems to correlate with the success of a child is the parents’ income, number of books in the house, etc etc. I do pretty well, come from an upper middle class family, and figured all I needed to do was not screw it up and nature would run its course.
This turned out not to be the case. It turned out that direct and constant parental intervention could make all the difference in the world. This is more than the usual “they fucked me up, my mum and da” stuff. At stake is more than us just paying his therapy bills when he gets older. We don’t know if he will ever be independent, but we know that what we do when he is young really matters. We remain very involved and very optimistic.
Now you are starting to piss me off a bit. Who are you to say that it is incredibly fucked up? You might not be able to imagine why anyone might appreciate being deaf, but when so many people clearly do, you use your own failure of imagination as a cudgel to criticize them. This is garden-variety ableism.
You’re completely wrong about this. It suggests what seems like your typical indifference to what disabled people actually think.
It is my job as a parent to force him to take his antibiotics when he has a bacterial infection. He resists, so I hold him down and compel him where necessary against his will. That’s my job. And when he grows up, he will understand the situation I was in and thank me for it. I hold him down for vaccines, which naturally he hates. He will thank me for that, too.
But now there are quite a few autistic adults who say that the therapies they received as children were, however well-intentioned, abominable. They do not thank their parents for them; they blame them for their deeply misguided efforts to “cure” them or to make them “act normal.”
A neurotypical person should ignore these voices at his peril. These are not the only opinions: therapies were received warmly and with great success by others. My son had eighteen months of intensive early intervention therapy. But my wife and I were careful to keep the voices of adult autistics in mind when we helped guide the intensity and modality of his treatments. Not focusing on making him “act normal” helped us to fix our attention on building communication and play skills.
I honestly do not think I am saying anything so radical and crazy here.
And I feel that Ableism is a pretty dumb concept. “A disability is thus, inherently, a “bad” thing that must be overcome. The ableist worldview holds that disability is an error, a mistake, or a failing, rather than a simple consequence of human diversity, akin to race, ethnicity, sexual orientation or gender.” Um… What? By the very definition of the word disability it is something wrong with you! Certainly nobody’s fault, but it’s something you have wrong with you. Comparing it to sexual or racial diversity only works if your race or gender or sexuality inherently has something wrong with it, like if blacks were severely hindered in social environments or if homosexuals couldn’t see. I just can’t wrap my head around this concept - it’s so backwards and bizarre to me. Yeah, people with disabilities need to be treated like human beings. No argument there. But acting as though the disability is “just another part of their character” should only be considered reasonable when there’s no cure, and it should not be considered a hindrance to finding said cure.
And who cares if someone appreciates being deaf, or blind, or a quadruple amputee? Some people appreciate being illiterate. Some people appreciate being stupid. Some slaves appreciated being enslaved. We don’t answer that with, “Yes, that’s your opinion and that’s perfectly okay”, we answer that with, “Wow, you need help”. By all means, appreciate the things you’ve learned through being deaf or autistic, the perspective it’s opened to you, but if you can’t recognize that it is in fact a disability which makes it significantly harder for you to act privately and/or publicly in human society and that if we can fix it we should, then there’s something wrong. Beyond the fact that you have a disability, obviously.
Oh, you mean therapies which didn’t work, and which didn’t have strong evidence behind them, which were often scarring, which were conceived during a time where the understanding of Autism was in its infancy (and still is)? Gee, I wonder why they’re resentful. If I had cancer and my parents gave me coffee enemas, I’d be resentful of them too, assuming I lived. But I wasn’t aware we were keeping it purely to the existing therapy, otherwise I wouldn’t be talking about it. Obviously - nothing we have now works to cure autism. But if we could find a cure - what then? Would it be the same thing? I doubt it. I think we’d come to see Autism much like mental disorders that we have a slightly better handle on - a disorder that a parent has a responsibility to cure when possible.
I agree with this. The evidence must be considered, and in many cases, especially with behavioral therapy, the input of adults with autism is valuable. But the question I find more interesting, because it’s rather disturbing, is what happens when we do have such a hypothetical therapy that can be shown to work. What then? That’s what I figured the broader discussion here is about. If autism is not a disorder, then there’s no need to keep searching for such a cure, and indeed such a cure would not be well-received, nor should it be. But I cannot rationally believe that autism is not a disorder. And I especially cannot believe that it’s somehow “ableist” to imply that disorders should be fixed when possible.
I dunno man, the ideas behind ableism (beyond the broad ideas that we shouldn’t discriminate against people with disabilities, with which I agree whole-heartedly) are disturbing. We should accept these harmful disabilities within people, rather than trying to fix them. We should treat them as though they were just normal permutations of the human condition, rather than normal permutations of the human condition that also lead to severe problems when interacting with others and getting by in life and that therefore should be fixed if possible. I cannot get past that. Please, tell me I’m reading too much into this? Because this is the impression I get from this.
A couple of years ago a doctor looked at my chart, consulted with others who’d been working with me for awhile, and then told me he suspected I was on the “spectrum”. It threw me for a loop and disoriented me for awhile. Since then I have become completely agnostic about it. If I must describe myself, I much prefer to call out my symptoms (dyspraxia, Tourette’s, obsessions, etc.) rather than use for an “umbrella” that doesn’t feel right on me.
However, the process has made me aware of the greater conversation regarding autism and identity. Frankly, I just don’t get it. In one ear I hear, “Accept us for who we are” and “Different, not disabled” and “Autism doesn’t need to be cured. Leave us alone!” And then in another ear I hear “Help us get jobs and housing and educational services. And when those things aren’t enough, give us disability payments and special accomodation at Disney World!” In other words, I hear different messages. If it’s confusing to me, I know it’s got to be confusing to someone who can’t relate at all to the “neuroatypical” experience.
Just because someone with autism thinks it’s “who they are” doesn’t mean that all autistics feel this way. There are many folks on WrongPlanet who are unhappy that they have a hard time socializing, dealing with emotions, obsessions, anxiety, sensory issues, attention problems, clumsiness, seizures, psychosis, catatonia, tics, and depression. I think it would be a shame to tell someone who is unhappy with these things that they should embrace them as a part of their identity.
I don’t think people should be ashamed of who they are. I spent a lot of my adulthood living in shame, and now I’m finally starting to shed that. And what has helped tremenduously is the avoidance of the personal pigeonhole. I think attaching oneself too strongly to a diagnostic label promotes personal pigeonholing, and unfortunately I saw it when I frequented Wrong Planet. People afraid that if they do X,Y, and Z, they aren’t “neuroatypical” enough…which would be a bad thing because then they wouldn’t be in the special club anymore. It’s the same mentality that holds back members of other minority groups. I find it sad and kind of messed-up.
A blind child is very likely to grow up to be a very different person than if he or she had been sighted. But to wish vision on them is no to wish them unborn, or that they were a completely different person.
You can’t apply post-hoc logic to people you love. I know people resulting from pregnancies that were unwanted. The babies were cherished despite this. Regardless, isn’t it better to be able to avoid unwanted pregnancies? Do mothers of unexpected pregnancies encourage young women to be careless about reproduction, or careful?
When a parent wishes their child wasn’t autistic, what they’re really saying is that they wish they didn’t have the burden that the disorder imposes on them. They’re not saying that they love their child any less, or cherish its personality any less.
Long ago I had friends who had a very severely retarded child, who couldn’t even sit up without assistance, never learned to speak, and was a huge burden on his parents. But he had a delightful attitude, usually smiling and laughing, and they loved him dearly. The same argument would apply: if his parents wish he’d been a normal healthy child, are they essentially abandoning him? If they contribute to charities to prevent his particular etiology, does that lessen their love?
Hell no. The point is valid that when you say you wish someone wasn’t autistic, you’re saying you wish they were a completely different person. But that’s not an argument not to call it a disorder, because the same argument applies to any disorder, especially mental ones.
An autistic person should be respected as a person, just as should a blind person, or a person who prefers green to blue. The former often require that we make adjustments when we deal with them; the latter rarely does. That’s the main difference, in my view, regardless of how it’s labeled in DSM. We all know that things have to be labeled as disorders to qualify for treatment or therapy or special training. We shouldn’t allow the word to color our perception of a condition. But in general, it does generally imply that the person with the condition and those around them need to make adjustments.
I don’t think it devalues Stephen Hawkins to point out that he suffers from a debilitating disease. I don’t think it an affront to him to want to cure that disease. Though, I haven’t asked him his thoughts on the matter.
Oh my God. That’s me. Only it wasn’t later in life, that was me as a three year old and all through school. Wow. I need to talk to someone about this, I think.
I have worked with both children and adults with developmental disabilities (incl. autism). Possibly because that was always in an institutional setting, the children rarely expressed to me that they wanted to be neurotypical, but the adults/teens/young adults did all the time. I heard it in very many different ways, but among the people with mild developmental disabilities (who are obviously more likely to express themselves on the subject) it came up frequently. That’s perhaps one of the difficulties specific to people with mild developmental disabilities: a heightened awareness of their “difference” and the ways that hampers their lives in our society. Many long for the things they see around them.
Of course we worked to tell them we thought they were wonderful the way they were, while giving them all the tools to be successful to their own fullest capacity. But if I could’ve waved a wand to make them neurotypical then I’m pretty sure most would’ve asked me to.
I absolutely understand that is not the case for everyone, and I do not doubt there are individuals and vocal activists who are happy the way they are don’t want the world to be so dissatisfied with them. From my experience I am not convinced they would make up a majority, though of course I worked with a specific segment. I’m also quite sure that particular group are those who are most likely to be exceedingly aware of their situation and also unhappy about it.
Even one of my best friends, an econometrist and programmer, is an aspie who would rather be neurotypical than deal with the particular cards he has been dealt. To me he is perfect the way he is, but I don’t have to deal with what he deals with so that’s easy for me to say. Meanwhile he gets the heebie-jeebies from patterns and he realises his life would be easier if he didn’t. Me, I’d like better knees, so we all have our things.
Gracer, your post reminded me of Pearl S. Buck’s wonderful book, “The Child Who Never Grew”, inspired by her daughter who was mentally retarded and discovered late in life, after anything could be done for her, to have PKU. She discusses higher-functioning people who to me sound more like they were on the autistic spectrum who said things like “I know I will never get married, because I’m queer.” Do keep in mind that when the book was written ca. 1950, “queer” did not mean the same thing it does now.
A very insightful thread. I have learned a great deal. Thank you for sharing the information.
A friend of mine has an autistic son. He is now a teenager. I have had a lot of contact
with them from the time the son was a toddler. I guess he could be described as the aloof type. In all these years of knowing them, the son never made eye contact with me.
On one occasion he did. He gazed into my eyes for maybe 30 seconds. I was so thrilled. On that occasion, I was high on weed. And I have always wondered, if me being high changed something? A coincidence, or was it just my turn to have eye contact? Any thoughts?
It is a disorder, because it presents problems with interacting with the world, and although various adaptations can mitigate those problems, some will never go away.
It is also a disorder that does affect the whole person. My daughter is high-functioning and I’m not sure she would choose to be free of her condition because she would cease to be her. I’m the same; yes, it would be nice not to have to still remind her how to use the toilet, but at the expense of her whole personality? I’m not so sure.
I have a relative who’s autistic. She appears to have an IQ in the normal range (she attends a regular school with an aide) but as she gets older, it’s becoming more and more apparent that she will never be able to live independently. She’s about 10 years old, and the latest thing is that if they go out in public and see other kids her age, those kids will almost always make fun of her even if they have never seen her before and do not know who she is. :mad: I wondered if it was because she’s overweight, and that’s part of it but not the whole thing.
She’s the type where it’s really obvious immediately upon meeting her that something is definitely wrong with her.
Be aware that Wing’s system of classifying autism according to those social dysfunction typologies never really took off although it was her 1981 paper “Asperger syndrome: a clinical account”, which included that sort of social dysfunction, that introduced the modern use and popularity of the Asperger concept and of a spectrum of autistic disorders that blends into normal variants.
I am curious though - why do you think you need to talk to someone about this? Let us imagine that you could be appropriately labelled as Asperger Syndrome. What does it change for you? And does your answer inform at all on the op?
I wondered if it was because she’s overweight, and that’s part of it but not the whole thing.