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National Autistic Society says media reports on an autism cure study are ‘deeply insulting’
- Thread starter Jaybee00
- Start date
Aren't there people with severe autism who can barely function? Who are immensely suffering? Would they not want their autism to be "cured" or "reversed"?
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Controversies in Autism on Wikipedia:
"There are two major conceptualizations of autism within autism advocacy. Those who favour the pathology paradigm, which aligns with the medical model of disability, see autism as a disorder to be treated or cured. Those who favor the pathology paradigm argue that atypical behaviors of autistic individuals are detrimental and should therefore be reduced or eliminated through behavior modification therapies. Their advocacy efforts focus primarily on medical research to identify genetic and environmental risk factors in autism. Those who favour the neurodiversity paradigm, which aligns with the social model of disability, see autism as a naturally-occurring variation in the brain. Neurodiversity advocates argue that efforts to eliminate autism should not be compared, for example, to curing cancer, but instead to the antiquated notion of curing left-handedness. Their advocacy efforts focus primarily on acceptance, accommodation, and support for autistic people as "neuro-minorities" in society.[34] These two paradigms are not fully exclusive, and many people hold a combination of these viewpoints.[citation needed]"
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Hoopoe
Senior Member (Voting Rights)
@forestglip the objection the autism advocates are making is similar to the one we make with regards to the lightning process. It's like claiming to have cured ME/CFS after subjecting patients to a treatment that teaches them to act like a normal healthy person. Are they really cured or just faking wellness to please others?
I'm not sure that is quite the case. They are saying that autism can be part of someone's identify and is not necessarily a bad thing that society should try to solve/prevent. While I understand this sentiment, I think the primary reason this point is made is because there is currently no cure and so no choice but to accept it as part of your identity. At the very least, I don't see why we shouldn't try to find a cure so these people have the option.
This is a bit different to ME/CFS as I think we all agree that this condition is something that we would be better off without. If a cure were available tomorrow, I would certainly take it and would be happy not to identify with the ME/CFS label anymore.
Hoopoe
Senior Member (Voting Rights)
The treatment (ABA) is known to increase distress and suicidality in autism.
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Andy
Retired committee member
The case report and review that the news reports are based on,
Reversal of Autism Symptoms among Dizygotic Twins through a Personalized Lifestyle and Environmental Modification Approach: A Case Report and Review of the Literature
Abstract
The prevalence of autism has been increasing at an alarming rate. Even accounting for the expansion of autism spectrum disorder diagnostic (ASD) criteria throughout the 1990’s, there has been an over 300% increase in ASD prevalence since the year 2000. The often debilitating personal, familial, and societal sequelae of autism are generally believed to be lifelong. However, there have been several encouraging case reports demonstrating the reversal of autism diagnoses, with a therapeutic focus on addressing the environmental and modifiable lifestyle factors believed to be largely underlying the condition.
This case report describes the reversal of autism symptoms among dizygotic, female twin toddlers and provides a review of related literature describing associations between modifiable lifestyle factors, environmental exposures, and various clinical approaches to treating autism. The twins were diagnosed with Level 3 severity ASD “requiring very substantial support” at approximately 20 months of age following concerns of limited verbal and non-verbal communication, repetitive behaviors, rigidity around transitions, and extensive gastrointestinal symptoms, among other common symptoms. A parent-driven, multidisciplinary, therapeutic intervention involving a variety of licensed clinicians focusing primarily on addressing environmental and modifiable lifestyle factors was personalized to each of the twin’s symptoms, labs, and other outcome measures. Dramatic improvements were noted within several months in most domains of the twins’ symptoms, which manifested in reductions of Autism Treatment Evaluation Checklist (ATEC) scores from 76 to 32 in one of the twins and from 43 to 4 in the other twin. The improvement in symptoms and ATEC scores has remained relatively stable for six months at last assessment. While prospective studies are required, this case offers further encouraging evidence of ASD reversal through a personalized, multidisciplinary approach focusing predominantly on addressing modifiable environmental and lifestyle risk factors.
Open access, https://www.mdpi.com/2075-4426/14/6/641
Reversal of Autism Symptoms among Dizygotic Twins through a Personalized Lifestyle and Environmental Modification Approach: A Case Report and Review of the Literature
Abstract
The prevalence of autism has been increasing at an alarming rate. Even accounting for the expansion of autism spectrum disorder diagnostic (ASD) criteria throughout the 1990’s, there has been an over 300% increase in ASD prevalence since the year 2000. The often debilitating personal, familial, and societal sequelae of autism are generally believed to be lifelong. However, there have been several encouraging case reports demonstrating the reversal of autism diagnoses, with a therapeutic focus on addressing the environmental and modifiable lifestyle factors believed to be largely underlying the condition.
This case report describes the reversal of autism symptoms among dizygotic, female twin toddlers and provides a review of related literature describing associations between modifiable lifestyle factors, environmental exposures, and various clinical approaches to treating autism. The twins were diagnosed with Level 3 severity ASD “requiring very substantial support” at approximately 20 months of age following concerns of limited verbal and non-verbal communication, repetitive behaviors, rigidity around transitions, and extensive gastrointestinal symptoms, among other common symptoms. A parent-driven, multidisciplinary, therapeutic intervention involving a variety of licensed clinicians focusing primarily on addressing environmental and modifiable lifestyle factors was personalized to each of the twin’s symptoms, labs, and other outcome measures. Dramatic improvements were noted within several months in most domains of the twins’ symptoms, which manifested in reductions of Autism Treatment Evaluation Checklist (ATEC) scores from 76 to 32 in one of the twins and from 43 to 4 in the other twin. The improvement in symptoms and ATEC scores has remained relatively stable for six months at last assessment. While prospective studies are required, this case offers further encouraging evidence of ASD reversal through a personalized, multidisciplinary approach focusing predominantly on addressing modifiable environmental and lifestyle risk factors.
Open access, https://www.mdpi.com/2075-4426/14/6/641
My understanding based purely on something I heard somewhere from a researcher who sounded knowledgeable is that the label of 'autism' actually covers a whole lot of conditions. So, the idea of a single 'cure' almost certainly isn't realistic, or even needed for some.
I think it's possible that people who just think a bit differently from the norm can get an autism label, and in those cases, the diversity has a lot to recommend it. Perhaps that range of conditions helps to explain the different views.
But, I don't know, I'm venturing into territory I don't really know about.
Also, I expect that autism research is just as bad as research in general, and there are a lot of claims that don't have much to do with reality.
I think it's possible that people who just think a bit differently from the norm can get an autism label, and in those cases, the diversity has a lot to recommend it. Perhaps that range of conditions helps to explain the different views.
But, I don't know, I'm venturing into territory I don't really know about.
Also, I expect that autism research is just as bad as research in general, and there are a lot of claims that don't have much to do with reality.
I have no idea about specific treatments in autism and obviously would not advocate for any treatments that cause more harm than good. I just took forestglip's quote as pushback against looking for any (even good) cures for autism. I even understand why that pushback might exist for Autism, but I think ME/CFS is a very different situation in regards for wanting a cure.
My perspective on this is that I'm autistic and I have an autistic child who would fit the 'severe' categorisation (at a specialist school, may never live independently, etc) except for being verbally fluent - the concept of 'severe' autism normally includes being non-verbal or just speaking a few words. I don't think either of us needs to be 'cured'.
When people talk about 'curing' autism they generally don't mean eliminating the kind of autistic brains which produce scientific breakthroughs and works of literary genius. They're usually talking about two different issues in combination: 1) developmental delays and learning disabilities which sometimes come along with autism, and 2) socially unacceptable or dangerous behaviours sometimes shown by autistic people under stress, which might include aggression or self-harm. An essential thing to understand is that problem 2 can be massively reduced not by 'curing the autism' but by removing sources of stress (as was done in the above case study) - for parents, this means going against almost all parenting and educational advice, which can be extremely difficult and isolating, just at a time when you particularly need support. The ABA school of treatment, in contrast, focuses on conditioning autistic children to behave in a socially appropriate manner, using rewards and punishments, on the principle that if the distress reaction can't be seen by others then the problem has gone away.
So what are we talking about 'curing'? I'd be in favour of genetic or pharmaceutical interventions that reduced the incidence of developmental delays and learning disabilities; also in favour of social and political interventions that would do the same! Better-funded health services, nutrition, clean air... And dietary/GI conditions are an obvious target for medical treatments that could improve quality of life in lots of ways.
But if there was a drug that autistic people could take to lessen the traits that make social situations difficult for us (not just socialising but school and work), would I take it? Would I give it to my child? Probably at least try it, to see if the reduction in stress made life easier long-term. But what would that drug actually do in the brain, how would it work? It wouldn't be hard to find something that lowered alertness to sensory stimuli and helped prevent getting overwhelmed (and of course some diagnosed and undiagnosed autistic people use alcohol and recreational drugs for exactly that purpose) but at the same time it would have to improve alertness to social cues and increase cognitive processing speed and task-switching capacity. Otherwise, by 'curing' one aspect of the condition you'd exacerbate others. What happens if this notional drug that helps task-switching also makes it harder to focus, or interferes with memory formation? Or if the drug that somehow increases receptivity to social cues ends up making burnout more likely because of all that increased cognitive demand?
I think the 'autism cure' industry isn't looking at those cognitive questions. They're interested in a pharmaceutical equivalent of ABA that will suppress outward differences and maintain a lucrative pool of lifelong users, regardless of whether those users are actually healthier or happier or better accepted in society.
And there would be an ironic consequence if schools become even more hostile environments for atypical children because 'they can just take the pills and act normal': the more inflexible and disciplinary the environment, the more children will struggle in it, and therefore more of them will meet the threshold for autism diagnosis when otherwise they'd have gone under the radar. But that's OK because they can just take the pills...
When people talk about 'curing' autism they generally don't mean eliminating the kind of autistic brains which produce scientific breakthroughs and works of literary genius. They're usually talking about two different issues in combination: 1) developmental delays and learning disabilities which sometimes come along with autism, and 2) socially unacceptable or dangerous behaviours sometimes shown by autistic people under stress, which might include aggression or self-harm. An essential thing to understand is that problem 2 can be massively reduced not by 'curing the autism' but by removing sources of stress (as was done in the above case study) - for parents, this means going against almost all parenting and educational advice, which can be extremely difficult and isolating, just at a time when you particularly need support. The ABA school of treatment, in contrast, focuses on conditioning autistic children to behave in a socially appropriate manner, using rewards and punishments, on the principle that if the distress reaction can't be seen by others then the problem has gone away.
So what are we talking about 'curing'? I'd be in favour of genetic or pharmaceutical interventions that reduced the incidence of developmental delays and learning disabilities; also in favour of social and political interventions that would do the same! Better-funded health services, nutrition, clean air... And dietary/GI conditions are an obvious target for medical treatments that could improve quality of life in lots of ways.
But if there was a drug that autistic people could take to lessen the traits that make social situations difficult for us (not just socialising but school and work), would I take it? Would I give it to my child? Probably at least try it, to see if the reduction in stress made life easier long-term. But what would that drug actually do in the brain, how would it work? It wouldn't be hard to find something that lowered alertness to sensory stimuli and helped prevent getting overwhelmed (and of course some diagnosed and undiagnosed autistic people use alcohol and recreational drugs for exactly that purpose) but at the same time it would have to improve alertness to social cues and increase cognitive processing speed and task-switching capacity. Otherwise, by 'curing' one aspect of the condition you'd exacerbate others. What happens if this notional drug that helps task-switching also makes it harder to focus, or interferes with memory formation? Or if the drug that somehow increases receptivity to social cues ends up making burnout more likely because of all that increased cognitive demand?
I think the 'autism cure' industry isn't looking at those cognitive questions. They're interested in a pharmaceutical equivalent of ABA that will suppress outward differences and maintain a lucrative pool of lifelong users, regardless of whether those users are actually healthier or happier or better accepted in society.
And there would be an ironic consequence if schools become even more hostile environments for atypical children because 'they can just take the pills and act normal': the more inflexible and disciplinary the environment, the more children will struggle in it, and therefore more of them will meet the threshold for autism diagnosis when otherwise they'd have gone under the radar. But that's OK because they can just take the pills...
rvallee
Senior Member (Voting Rights)
This will keep growing until medicine gets the message that they cannot promote some pseudosciences to the core of medicine without elevating all of them. In the process they are creating a giant credibility debt that they are very poorly equipped to deal with, more likely to rage against the consequences than to find fault in anything they are doing.
They seem completely oblivious to the profound damage they are doing to their own reputations.
As I have said before, trust is the single most important element of the clinical encounter and relationship. Lose that and it is all over.
RedFox
Senior Member (Voting Rights)
The mainstream view is that autism is a pathological condition and should be treated.
The autistic advocate view is that autism is a normal state of existence, but that mental problems that cause serious trouble functioning can co-occur and should be treated.
A very crude analogy might be a Chinese person with a speech impediment. An American doctor will be convinced the solution is forcing their way of life on them and teaching them to speak fluent English. Their family and community will want them to simply be able to speak Chinese well, the language the individual would likely want to grow up to speak.
Ariel
Senior Member (Voting Rights)
There is not enough understanding of the point that there is often a conflation between "autism" and co-occuring conditions. People want to treat the co-occuring conditions that are causing various problems with functionality. But autism itself is not eg epilepsy or developmental delay.
To the extent that autism describes a difference in patterns of thinking it's not surprising that advocates do not want to be "cured". ABA for example is viewed as a harmful and inappropriate form of conversion therapy eg. gay conversion therapy.
It's quite surprising that anyone is talking about "curing" autism given recent controversies in the area and the widespread adoption by various authorities of neurodiversity language etc (although people still do behavioural therapy which can be variously harmful).
Sly Saint
Senior Member (Voting Rights)
Merged thread
Experts lash 'insulting' report that claims autism can be 'reversed'
it was this comment from KCL that made me raise an eyebrow
"'These are not evidence-based interventions,' said Dr Rosa Hoekstra, a leading expert on neuro-developmental disorders at King's College London."
Experts lash 'insulting' report that claims autism can be 'reversed'
Experts lash 'insulting' report that claims autism can be 'reversed' (msn.com)Experts have slammed a study that claimed severe autism in children can be 'dramatically improved and reversed' with a controversial behaviour therapy.
The research focused on a pair of twin girls from the US whose autism was serious enough to require 'very substantial support' at 20 months old.
It was claimed the girls' symptoms were drastically reduced — to an indistinguishable level in one of them — after a two-year programme of interventions.
These included giving them Applied Behaviour Analysis (ABA), which aims to teach autistic children how to behave in 'appropriate' ways.
The criticised study was published in the little-known Journal of Personalized Medicine
They were also placed on a gluten-free, low-sugar diet and given a number of dietary supplements, including omega-3 fatty acids, a multivitamin and vitamin D.
But experts say the study was poorly devised and amounts to no more than an 'anecdote'.
'These are not evidence-based interventions,' said Dr Rosa Hoekstra, a leading expert on neuro-developmental disorders at King's College London.
it was this comment from KCL that made me raise an eyebrow
"'These are not evidence-based interventions,' said Dr Rosa Hoekstra, a leading expert on neuro-developmental disorders at King's College London."
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