Epiphanies 2021: When is a difference a problem to be cured? And who decides? [Autism]
I'm prompted by the recent protests against Simon Bar Cohen plans for research into Autistic Spectrum Disorders (ASD), clearly with a goal to find a cure.
To avoid further misunderstanding I'm hidden texting the parts of posts which introduced an additional very sensitive subject into the mix which needs its own thread - thanks Louise Epiphanies Host
It also harks back to when I was working in the USA and first came across this type of issue due to campaigning about research to cure deafness. Then as now, I couldn't really get my head around that one.
In both cases, protests were from people who had the condition (which even itself is a loaded word), and who felt that the idea that it required a cure was nothing more than a form of eugenics, designed to exclude human variations which "society as a whole" considered should be eliminated. And it was simply demeaning by labelling people in the group as defective.
So it raises a lot of issues in my mind, some being:
There will often by a lack of unanimity within the group of people identified.
Very wide ranging diagnostic categories do not help, and this is definitely true with ASD.
The extreme reaction of some people to any suggestion that "there is something wrong with you" often strike me as irrational but understandable, and I'm not really sure how to view this.
What do you think?
To avoid further misunderstanding I'm hidden texting the parts of posts which introduced an additional very sensitive subject into the mix which needs its own thread - thanks Louise Epiphanies Host
It also harks back to when I was working in the USA and first came across this type of issue due to campaigning about research to cure deafness. Then as now, I couldn't really get my head around that one.
In both cases, protests were from people who had the condition (which even itself is a loaded word), and who felt that the idea that it required a cure was nothing more than a form of eugenics, designed to exclude human variations which "society as a whole" considered should be eliminated. And it was simply demeaning by labelling people in the group as defective.
So it raises a lot of issues in my mind, some being:
There will often by a lack of unanimity within the group of people identified.
Very wide ranging diagnostic categories do not help, and this is definitely true with ASD.
The extreme reaction of some people to any suggestion that "there is something wrong with you" often strike me as irrational but understandable, and I'm not really sure how to view this.
What do you think?
Comments
I had occasion to put my priest-in-charge right on this subject a while back, when he wanted to put in his weekly newsletter *Pray for X, suffering from autism*.
I explained to him that autism was not an illness, but a way of being. He took the admonition in good part, because he realised that he was wrong...and, in fairness to him, he had been asked to pray by X's parents, who may well have been finding X and their autism hard to comprehend, or to deal with.
Education, education, education...
I wouldn't like to say whether deaf people have a similar experience, but I suspect it is complicated by the fact that one can become deaf in a way one cannot become autistic.
Edited to add that it's better to talk about 'autistic people' than 'ASD' as many autistic people don't see it as a disorder. That's the whole point behind protesting the idea of a cure. It's not an illness or disorder in the first place. Simon Baron Cohen (not Simon Bar Cohen) also perpetuates an extremely misogynistic (and often transphobic) stereotype of autism being the 'extreme male brain' which harms autistic women and girls and leads to a huge lack of support for them.
Which is presumably why it's in Epiphanies
Argh - apologies. My brain still sees Epiphanies' spot on the front page as being where Purgatory is.
Yes - I think the wording ended up simply as *pray for X and their family*, which I thought was fair enough, and fulfilled the priest's promise to pray for them all.
Hi everyone, we do ask people when discussing one important issue to try not to import other important and sensitive issues as analogies/discussion points which can derail the thread, if they do not belong to the group whose experience they are bringing in, so I would like people not to discuss the Deaf community as an analogy/contrast on a thread about Autism please. If people want to discuss the Deaf Community and Deaf culture, that's an important subject and I'd rather it had its own thread. ( If you are Deaf and want to bring in how it intersects with Autism that's fine, but not for hearing people as a talking point please)
Thanks!
Louise
Epiphanies Host
hosting off
Now of course, a lot depends on how effective this is, and whether it entails any colateral disadvantages, so I am not saying that any solution no matter how partial should be applied. But to oppose research so as to enable a fully effective solution does not strike me as fair.
Allow me to suppose . . . that I have a new child with no hearing, and further suppose that hearing can be fully restored by some technology and/or procedure and that I choose this for my child.
I do not see that my child was borne with any absolute right to learn sign-language, that is being denied by the (supposedly inferior?) use of hearing. To call that cruel just strikes me as unfairly judgemental.
Reiterating my previous host post to take discussion on Deaf Community and Deaf culture to a separate thread please, and if you are not yourself Deaf please think twice before opining on this and go look at what Deaf people have to say about it and please centre their voices.
Thanks
hosting off
Hi Pomona I think this is coming on a bit too strong to someone else's personal life, please see following host post - Louise Epiphanies host
Isn't that, at a more trivial level, true of any change? If you could put me to sleep and teach me Chinese overnight, then at some level, old-me would be dead, and a different, Chinese-speaking person would wake up. By virtue of having a different language to think in, I wouldn't be "the same person". I'm not sure you can draw bright lines between things that are part of someone's "intrinsic nature" and things that aren't.
And if, instead of taking the magic Chinese language pill, I spent several years learning Chinese, living in China, and learning to think in Chinese, would I be the same different person? Would I still be the ship of Theseus?
What does it mean to "cure" Autism?
Are we talking about some sort of screening process that encourages the selective termination of autistic people? The only sense that that is a "cure" is in a societal eugenics sense.
Are we talking about ways of teaching autistic children that better equip them for life? That sounds like a perfectly sensible thing (rather like there are ways of teaching reading that are effective for many people with dyslexia, and there are ways of teaching reading that aren't.)
Or are we talking about some sort of medical intervention, that identifies the neurological differences between autistic people and neurotypical people, and alters the brain chemistry or whatever in an autistic person to "make them neurotypical"?
Just a reminder that terminology differs around the world - and that we're a global board. Terminology unacceptable in one neck of the woods may not be elsewhere and might be normal or preferred elsewhere. And people may have preferences which differ from the norms in their communities. If you're taking issue with the terminology of someone in another country please don't make flat statements about what's ''acceptable' and what isn't. It's Ok though to say 'I wouldn't find that acceptable in [place where I live] and to link to something illustrating that, that helps people to navigate international sensitivities.
Autism isn't an illness but questioning why people's family members are taking medication is getting too personal - so please don't do that.
Thanks!
Louise
Epiphanies Host
hosting off
Humans are thinking animals. Our cognition is one of the ways we define ourselves as a species and is therefore going to be very intimately connected to our sense of identity in ways that other things will not. Altering the way someone thinks and processes information touches on who a person is much more strongly than other biological processes. For example, very few diabetics would regard their inability to metabolize sugar as so inherent to who they are as a person that they'd refuse to have the condition magically corrected because it would make them a completely different person.
(Talking as someone who has worked in special needs for years, including as a special needs co-ordinator.)
Returning to the Op: https://www.nature.com/articles/d41586-021-02602-7 has summary of the Boycott Spectrum 10K issues.
It does appear that big worry is the potential to try to develop prenatal screening, as has happened to people with Down’s syndrome.
Clearly one would want those with the condition to be central to this but this is far from straightforward.
An issue is raised about the participation of carers (typically parents) to be part of this process. This would be a factor for autistic people where virtually nobody would contradict that fact that their condition is hugely debilitating, and also a huge problem to their parents. This is true of all the autistic people I know.
Some would say that carers have no right to a say in this, but the problem then is that the most severely affected may have no way to raise their opinion. This of course could be helped if we could arrive at more specific diagnoses.
I'm not always certain about what it means when people say something is "intrinsic", but I question the assumption that because something is intrinsic, changing it must always be for the worse. There are things about me which could be considered intrinsic, which I would change if I could. I just don't equate "intrinsic" with "shouldn't try to change".
To clarify, I do know what this word means, but it covers a whole big ole spectrum.
We don't know what autism is. We have diagnostic criteria, and if you check enough boxes, then you may be diagnosed as on the autism spectrum, but we don't know what causes it. We don't know if it's caused by one thing, and the various different ways that autism presents are different manifestations of the same underlying cause, or if there's a whole bunch of different things that can cause what we label as "autism".
The phrasing of "a cure for autism" rather presupposes that autism is one single thing that admits a cure.
Madame and I have great problems with the description "rightly their native language". What is any more native about the language they are taught than there is in English, French, German, Bahasa or any other? All are taught. Moving from there, the use of cochlear implants will facilitate the general way of life for many children who would otherwise be excluded from many of the day-to-day activities of other children. Finally, is it possible that for many parents, even those with the best will and intentions, learning another language will be extremely difficult?
Louise, I hope this does not transgress your ruling. It arises directly from a post you allowed.
Sorry for the misunderstanding but this isn't what was intended - please see following host post. I have now hidden texted the earlier posts - Louise Epiphanies Host
Sorry Gee D that post is prior to my host post ruling this subject off bounds for this thread but the host post was meant to stop all discussion of that topic on this thread. I've hidden texted those earlier posts to avoid misunderstanding.
Please start a new thread if you want to discuss this subject and if you do, please see my previous post asking posters to listen to what Deaf people themselves have to say about this and to reflect it.
Thanks
Louise
[Hosting off]
While this is no doubt true for many, it is not universal. I have a neurological condition that affects how I think and process information, and were I to be offered a way to go to sleep and wake up without it I would take that option in a heartbeat. Sure, the person who woke up would be different to the person who went to sleep, but it would still be me - just a better version of me that is actually able to navigate the waters of social interaction without running aground on every other reef.
I don't care that it's something that's been a part of me since birth (albeit undiagnosed until a few years ago), or that it's something that is an intrinsic part of the person I now am. It's still something that's wrong with me and that I'd love to be without.
Just to make it abundantly clear, I'm speaking for nobody other than myself here. I just wanted to put my perspective across as a counterpoint.
Well, that's the whole question of the thread isn't it. To what extent are such things problematic because of something wrong with society versus something wrong with the person? If God had made a perfect world, which conditions would be part of it and which wouldn't? What is a normal part of expected human variety and what is a disorder that needs to be fixed (this does not imply that all conditions in the latter category can be fixed, of course - but then there are also plenty of physical conditions and diseases that have no known cure)?
I'm not suggesting that there are easy answers to these questions. But that doesn't mean they shouldn't be asked.
Don't get me wrong, I do think society could do a much better job of helping people with neurological conditions - as indeed it should for those with physical conditions. I just don't agree with those who would say there's nothing wrong with me, I'm exactly how I'm supposed to be, and all my problems are due to society not adapting to fit my needs. Because it's not society's fault that my brain doesn't work properly. And if my brain not working properly means it sucks to be me then that's not society's fault either.
I have ADHD. I was diagnosed aged 50 but my coping strategies have lasted a lifetime. The coping strategies all involve me adapting to a largely neurotypical world.
(I tried various medications, which are stimulants and cause the neurotransmitters which are ‘defective’ to fire where they should. They very much help focus and concentration. I hated it, I was so used to bing in this brain that I couldn’t adjust. It’s much easier for children.)
My neurological difference really does make me me. I love it that I’m creative in a quirky way. I make connections which nobody round me does. I’m a really quick thinker and can have the whole room laughing with my quick wit.
But, if I don’t use my coping strategies to check my behaviour, I’m a disruptive influence in many ways. So I do.
I love being with other ADDers. We can simply enjoy being ourselves, no self checking - and totally understand and enjoy the crazy, random, - everyone butting in - conversations which invariably happen.
One of the other well-known neurodiversities is dyslexia*, which, again, like autism, if severe, can be disabling, with an inability to organise or read, and is particularly frustrating in younger children. But many people with specific learning difficulties see in three-dimensions and maybe in four†, so are sought after in engineering and architecture. Many of the more severely affected boys I've worked with have ended up in car maintenance or construction roles (carpentry, electrician), or drivers who can visualise maps.
Should we be diagnosing and removing dyslexia from the population? Mostly recommended school support is some simple accommodations like helping the student with accessible timetables, allowing extra time in exams or use of computers to complete work and teaching coping and management techniques.
Why is this acceptable for people with dyslexia, but not for those with autism?
Subscript removed as it causes accessibility problems for visually impaired people - please stick to normal sized text thanks L Epiphanies Host
* dyslexia means difficulty in reading. This is another neurodiversity where language and terminology varies. Working in English schools, I have read Educational Psychology reports that referred to children with significant Global Learning Difficulties (GLD) with dyslexia. Those children had general learning difficulties that included very low reading ages. What the general public thinks of as dyslexia in the same terminology is technically Specific Learning Difficulties (SpLD) - a spiky profile that usually shows a specific difficulty in accessing spelling and/or reading, but are otherwise verbally and socially/emotionally at age appropriate or higher levels;
† four dimensions - a diagram moving in time.
We're told, as teachers, that with both dyslexia and dyscalculia we should be looking out for students whose abilities in those areas fall significantly below their general attainment, so many of our lowest attaining students won't have a dyscalculia diagnosis as a result.
Dyslexia in Ed Psych speak meant difficulty in reading full stop. That the child had difficulty speaking, walking and everything else didn't make any difference. They were coded as having Global Learning Difficulties or Severe Learning Difficulties or Moderate Learning Difficulties, depending on level of need and dyslexia.
Hi Curiosity, putting things in subscript has been a problem for visually impaired posters, so please stick to normal sized text - thanks! Louise, Epiphanies Host
* CAT scores - cognitive ability tests administered to all students on entry in year 7 (age 11) - which tested verbal, non-verbal and quantitative reasoning, used for setting learning groups, identifying low ability students and general predictions of achievements. Results came back as normalised numbers of 65, 2SD below average and as low as the test went, 85-115 average - 130 2SD above average. Anyone who had a difference of more than 10 on their verbal or quantitative reasoning compared to their other tests was checked for dyslexia or dyscalculia. Interestingly, I wandered down with the list of students whose non-verbal score was 10 or more below their other scores and asked the deputy head if he recognised the names, and I'd found all his behaviour issues and a few more who had learned some other coping mechanisms and were quietly getting along with things.
Taking this back to ASD, there was nothing obviously spiky in the profiles that I saw, and I checked all the pupils on the SEN register to see how their results matched up.
One self referred at 6th form the other was a parental referral in primary. Both profoundly dyslexic.
At that time, one would have liked whatever-it-was to be removed please, yesterday .
The other just knew it was part of who they are.
A third was treated As If They Were dyslexic. I think that one would prefer folk to see them for who they are not what they can’t do.
This is interesting. And helpful. Maybe I need to catch up and see how they view this now?
I foresee some interesting family conversations ahead.
Well, yes, but.
A person who cannot use their legs is not just "disabled by society" - there's a whole bunch of things that most people find straightforward that they cannot do. You can certainly blame society for unthinkingly scattering steps about the place, and not taking account of this person's need to use a wheelchair to get about, but you can't blame society for the fact that this person can't climb mountains, or run across moorland.
But it's clear that, from an objective viewpoint, having the use of your legs is better than not having the use of your legs.
In the case of autism, it's not so obvious that "normal" is better.
Driving on the left is not objectively better or worse than driving on the right, but being a left-driver in a society full of right-drivers is going to cause you problems.
SENCO please - a Southern England Non-Commissioned Officer?
Special Educational Needs Co-Ordinator.
I experience some aspects of my autism as differences and some as disabilities. For example, my extreme sensitivity to touch, taste, sound, light and smell can be seriously inconvenient and my inability to read some kinds of social interaction does feel like a mental blindness. Having hyper focus on issues and being happy in my own company (and much less so in large groups) are more like differences.
Autism, even in severe cases, is a Developmental Disability.
You don't "cure" a disability, you accommodate it, same as Downs Syndrome, Cerebral Palsy, and any number of other conditions.
And you can treat it.
You can't "cure" someone of Cerebral Palsy, but appropriate treatments can reduce its effects. And it doesn't seem theoretically impossible to imagine some future treatment that, if administered early in childhood, could cause many children with CP to grow in to fully able adults. That starts to look pretty close to a "cure".
Down Syndrome? It's harder for me to imagine how medical interventions to reduce the effects of Down Syndrome might work.
The OP used the word "cure." That was what I was addressing.
Is there a cast-iron definition of the difference between a disease and a disability?
Starting with the theory of mind model of autism this paper (link) from 2019 argues that (quoting the scientific abstract):
A lot of treatment of autism is based on ABA - Applied Behaviour Analysis - which treatment is not without controversy - see this article from Spectrum News. Those who have been through it describe it as trying to make them "normal" and fit a mould they find oppressive and uncomfortable. And it is trying to make those children lose the differences that make them them. When you see or read people who live and work with autism, those differences are profound, but bring skills too. We risk losing those skills when we try to change people.
(Anecdotally, my daughter who is a mechanical engineer was asked at university how many of her cohort had a diagnosis of ASD and how many dyslexia - it was about 33% of both in that year. Some people with autism relish the careful detailed work required in engineering.)
The extreme maleness model of autism has meant girls and women are regularly undiagnosed and treated. Having worked with a young girl with a diagnosis of autism who was the only child I've seen a class cleared around, girls can be badly affected, too, and this is one of the reasons that the extreme maleness model is generally disliked.