When I read about Simon Baron-Cohen and ASD, I am strongly reminded of the situation back when my daughter was diagnosed with CFS/ME*. At that time, Sir Simon Wessely was the leading establishment name in the field. His background is psychiatry and his theory was that CFS/ME is a somatic disease, so should be treated accordingly, by GET and CBT as the only treatments, to much outcry from the patient groups, including people who were research scientists and GPs who had contracted CFS/ME and had started researching their own illness. These researchers were finding physical traces and markers of some significant physical issues, which were proven to deteriorate when treated with the particular graded exercise programmes promoted by Wessely's treatment centre.
Now, in the wake of Covid19, there are millions of people with post-Covid syndrome, looking very like CFS/ME with what sounds like very similar pathways. And NICE no longer recommends GET - BMJ article.
CFS/ME - chronic fatigue syndrome/myalgic encephalomyelitis c/f post Covid syndrome - a post viral illness that has symptoms of long lasting fatigue and other problems, including fitting, paralysis, migraine, fainting and inability to maintain standing positions;
GET - graded exercise therapy - a very rigid programme of exercise therapy. One of the most notorious cases that Wessely treated was a 14 year old boy who it was decided was faking his paralysis and he would be able to move if he had enough incentive - so they threw the kid in a swimming pool and had to fish him out half drowned, still unable to move;
CBT - cognitive behaviour therapy - a well-known therapy that is often used to help people deal with life changing diagnoses such as cancer by focussing on what they can do and how they can best help themselves. Unfortunately under the Wessely regime CBT was used to "help people reorganise their disordered thinking".
NICE - national institute of clinical excellence - body in the UK that recommends cost effective treatment regimes.
I sometimes think (when I hear about stuff like this, and psychology's reproducibility crisis) that our understanding of the mind is roughly equivalent to our understanding of chemistry c1800. We're sort of vaguely kinda trying to apply the scientific method without either the skill to collect adequate data or the imagination to construct sensible and testable hypotheses.
I sometimes think (when I hear about stuff like this, and psychology's reproducibility crisis) that our understanding of the mind is roughly equivalent to our understanding of chemistry c1800. We're sort of vaguely kinda trying to apply the scientific method without either the skill to collect adequate data or the imagination to construct sensible and testable hypotheses.
I don't think that's quite fair to, for example, Antoine Lavoisier. Make it 1750, and I might agree.
I sometimes think (when I hear about stuff like this, and psychology's reproducibility crisis) that our understanding of the mind is roughly equivalent to our understanding of chemistry c1800. We're sort of vaguely kinda trying to apply the scientific method without either the skill to collect adequate data or the imagination to construct sensible and testable hypotheses.
I don't think that's quite fair to, for example, Antoine Lavoisier. Make it 1750, and I might agree.
Well, I was initially thinking c1650 but decided to be generous.
Now, in the wake of Covid19, there are millions of people with post-Covid syndrome, looking very like CFS/ME with what sounds like very similar pathways. And NICE no longer recommends GET - BMJ article.
I have had post-covid syndrome for 18 months but mine is due to postural Orthostatic tachycardia syndrome, for which graded exercise can be appropriate treatment. I don’t think it is possible to generalise what post-covid syndrome is as it appears to have different manifestations which may require different treatments.
Totally agreed, graded exercise can be appropriate, but as the BMJ article attached says, working within the envelope of the patient's abilities, not that version originally prescribed. The problem with GET as pushed for CFS/ME was that it did not start from where the patient was, nor did it progress by building on that baseline.
(I got my daughter up and out of CFS/ME by building from a baseline, and when she was stable at that baseline adding 10% more, then waiting until she was stable at the new level before increasing the level of activity. The CFS/ME GET was not like that, it had a rigid exercise programme that people were made to follow, regardless of any relapses or before the strength had been built up at that level.)
I wasn’t discussing whether the exercises were appropriate for ME/CFS, what I was saying is that post-covid syndrome is not necessarily ME/CFS in response to your discussion . Mine isn’t.
A friend of ours, when she got into a L'Arche home, was given treatment for a thyroid condition, part of the Downs effects, which had not been addressed until she was there, in her forties, and it made a tremendous difference to her. So that was a medical intervention reducing the effects of Downs syndrome.
And again, that's not "curing" Downs Syndrome. Medicating symptoms or accommodating needs isn't the same thing as curing the condition.
BullFrog: I don't like getting too hung up on terminology, although I understand that professionals in a related field do have greater autority. But is it so definitely proven that advances in DNA modification could not lead to a cure for some developmental problems?
Is there a cast-iron definition of the difference between a disease and a disability?
Terminology is pretty important. Words are the basis of communication.
A disease is the consequence of a foreign agent entering your body. You can eliminate the foreign agent and eliminate the disease.
A developmental disability is a condition you are born into, not something that happens to you.
Sometimes developmental disabilities can be the consequences of accidents, but in that case it's a fundamental change in the hardware of the body, usually the brain. And it's not something you can change just by eliminating an infectious agent and watching the body "heal" itself.
Generally, as noted, you can "cure" a disease, you cannot "cure" a disability.
And of course, a lot of autistic folks aren't exactly thrilled with being treated like they're "disabled" just because they don't always interface perfectly with "neurotypical" folks.
The person with the disability, insofar as they can be trusted to express a clear opinion. If not, probably falls on whoever the legal guardian is.
Which is problematic because some parents of autistic kids are clueless and prone to abuse in search of a "cure".
And sometimes that is intentional abuse and not cluelessness. Let's not pretend that all parents of autistic and other neurodiverse children have their best interests at heart. Neurodiverse children are at huge risk of being injured or killed by their parents and caregivers. Religion, unfortunately, is a huge driver of this.
The person with the disability, insofar as they can be trusted to express a clear opinion.
This is straying into ableist ways of talking see following host post - L Epiphanies Host
This seems to be settled doctrine among advocates. But, to my mind, it is silly. No man is an island. For example, if we are considering a work environment, the ability of the group to accomplish its task is paramount. How that is accomplished within the group may require the majority of the group to adjust or the source of the perturbation to do so. There is no reason to lift the desires of one person above everyone else that I can see.
Specifically wrt autism, there appears to be some real advances in recognizing the value such folks can add in, e.g., software development (my old field.) One way that a proper resolution of tensions can be brought about is by finding the value in our differences. This is not always possible, of course, but insisting that one person is more valuable than others by denying the impositions that they make on those others strikes me as both dishonest and self-defeating.
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.
I think it is important to note that ABA, as originated by Lovaas is a different approach to Positive & Proactive Behavioural Support (PBS) - BILD video intro. The similar names can lead to confusion.
A behaviour is anything you say or do, behaviours of concern are often defined as
culturally abnormal behaviour(s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities” (Emerson, 1995).
A lot of people with an intellectual disability also have autism, and that can lead to confusion in the minds of the general public and law makers as to what the needs of people with autism may actually be.
@tclune making reasonable adjustments in the workplace and educational settings is a legal requirement and applies to many many disabilities and medical conditions. Do you think a wheelchair ramp or an accessible bathroom being installed for one employee who uses a wheelchair is an imposition or suggesting that person is somehow better than others? Adjustments for neurodiversity are equally important and equally *required*.
The person with the disability, insofar as they can be trusted to express a clear opinion.
This is straying into ableist ways of talking see following host post - L Epiphanies Host
This seems to be settled doctrine among advocates. But, to my mind, it is silly. No man is an island. For example, if we are considering a work environment, the ability of the group to accomplish its task is paramount. How that is accomplished within the group may require the majority of the group to adjust or the source of the perturbation to do so. There is no reason to lift the desires of one person above everyone else that I can see.
Specifically wrt autism, there appears to be some real advances in recognizing the value such folks can add in, e.g., software development (my old field.) One way that a proper resolution of tensions can be brought about is by finding the value in our differences. This is not always possible, of course, but insisting that one person is more valuable than others by denying the impositions that they make on those others strikes me as both dishonest and self-defeating.
Indeed. Neurotypical folk frequently make impositions on the neurodiverse.
I am a parent of a child on the Spectrum. As a result of my profession, I come in contact with many parents of children on the Spectrum. Although I am sure they exist, I have yet to meet a parent who is clueless or abusive. The parents I know are all seeking professional assistance for their child. Re. adjustments in school and university, in my jurisdiction "reasonable academic accommodations up to the level of undue hardship" are required through judicial interpretation of human rights legislation.
A reminder that we don't do ableism on this board. Autistic people and other non-neurotypical people are on this thread and posting. Folk can respectfully ask autistic people what they themselves think about the workplace and listen to their views. It's not a case of finding out from 'advocates' or just talking to or about 'advocates'. That is talking over people who are here and on this thread.
It's also necessary for posters speaking of or about non-neurotypical people to carefully avoid language which could be construed as contemptuous, pejorative or dehumanising eg.
I am a parent of a child on the Spectrum. As a result of my profession, I come in contact with many parents of children on the Spectrum. Although I am sure they exist, I have yet to meet a parent who is clueless or abusive. The parents I know are all seeking professional assistance for their child. Re. adjustments in school and university, in my jurisdiction "reasonable academic accommodations up to the level of undue hardship" are required through judicial interpretation of human rights legislation.
Generally abusers don't appear that way to people who aren't their victims. Respectfully, you have no idea what those other parents are doing behind closed doors.
And abuse can be many things. For example, as mentioned above, I gather that many in the autistic community consider ABA abuse. Well, I know of a woman in my neighborhood who says she is doing ABA* with her child. She particularly said she didn't want to hear anyone's opinions on that when it came up, so I know she is aware that her choice is problematic. Is she an abuser in my area? I can't be sure, but I worry so.
*And of course some less problematic things are called ABA too.
Yes, I'm not super experienced with ABA since people in my cohort tend to be officially diagnosed later if at all - but afaik ABA exists on a spectrum and some non-abusive practices get included.
It's not just the methods that can be abusive, it's the goals. All too often it's about pushing autistic kids into masking more, making them stick out less, but in doing so suppress their self-soothing mechanisms.
@Doublethink I follow a number of people with autism on Twitter, and there is a lot of ABA research happening now and being called out now. And as @Arethosemyfeet says, one of the big concerns is a frequent insistence on losing stimm behaviours, self-soothing mechanisms, which, from the descriptions I've read are often not harmful.
I am aware that some self-soothing behaviours can be harmful - banging a head against a wall can do damage - and I've seen that in a child I worked with, but the one that is regularly called out is the prevention of chewing soothing mechanisms rather than providing with a stimm pendant to chew on - see this example from Etsy (link)
I am aware that there is poor practice around, and that punishment techniques and shock batons are still being used in some countries. I was merely pointing out that there are a lot of sets of very similar names and initials out there that can describe very different interventions.
Re @Arethosemyfeet 's point about goals, PBS is meant to avoid that - though obviously that is not a guarantee against poor practice.
The person with the disability, insofar as they can be trusted to express a clear opinion. If not, probably falls on whoever the legal guardian is.
Which is problematic because some parents of autistic kids are clueless and prone to abuse in search of a "cure".
Agreed, though it's very hard to find non-problematic rules for people who can't self advocate. I suppose, in that case, there'd be robust state guidelines for the care and handling of such a person.
Also, I hope it's obvious, I think great pains must be taken for any person to achieve communication. As noted, there are many tools.
I do think there are people for whom it is very difficult to achieve communication, but that is not saying they're of less value, or that efforts shouldn't be taken. And of course these are not representative of the entire spectrum of the autistic experience in humanity.
Self advocacy is always best when possible. Tread with extreme care otherwise, and I think that's one reason I'm really leery of the "Let's cure them!" approach with people for whom it may be difficult to get a clear sense of their desires vis a vis "curing." And the folks who are able to self advocate often seem to resist the idea that they have such a need, for quite sensible reasons.
A recent BBC documentary highlights the variability of autism, and I should issue a SPOILER ALERT since there is a sort of twist. It features the families of the comedian (I'm a fan) Paddy and Christine McGuiness and the footballer Paul Scholes and his wife Claire (not featured in the film). Scholes son was severely affected. He had no speech and was not expected to attain it. His other two children were not autistic. All the three McGuiness children were diagnosed autistic (two were non-identical twins). We didn't see a lot of any of the children, which is fair enough, but the impression was left that Paddy and Christine's son was the most affected.
Simon Baron Cohen featured in the film although he was not dominant. He gave the view, more or less as a fact, that autism is caused 100% by genes, and this led the McGuiness couple to take a test. The twist is that Christine McGuiness ended up with a diagnosis of autism. Loads of issues follow for me, the main ones being the variability of symptoms and the issue of masking which was very prominent in the program.
The issue of variability arises when you think that the couple have been together ten+ years without Paddy realising that his wife was autistic. It is true that Christine herself was not surprised and confessed to always having known there was 'something not quite right' and that she needed to more or less confect here life to fit in. Which is what masking is all about, and she obviously did it remarkably well.
The program stated that girls mask much better than boys, and although it did not say this, it could be that this is why autism was/is thought to be more common is males. Maybe it's just less concealable. But this seems to blow the idea that autism is a failure of empathy out of the water. To me, it is part of the essence of empathy to be sensitive to how others see you and to have the desire to adapt so as to establish good relationships.
But it also made me fear that autism is being over-diagnosed, and it is true that some have wandered if I could be on the spectrum. I have had to mask all my life, in the sense that I know aspects of my personality don't help social relations, so I need to make an effort to fit in.
But who hasn't? OK to varying degrees but the idea that we are social animals and that "fitting in" is just a part of learning how to live in community, makes sense to me. There have always been those where I fit in easily and others (more I would say) where I don't, and sometimes I couldn't care less, but sometimes I make the effort. But generally I would admit to being introverted, and as the popular expression goes "living too much in my head".
Of course were I to know Christine she might explain that my experience of masking is nothing like hers, and hardly merits the term. One thing that was really interesting was that Christine deliberately tried to game the questionnaire, but was found out.
For me, I could not come to any conclusion for a condition with such a wide range of variability.
This is why I wish I could divert it away from autism.
Autism is indeed a spectrum. In my professional experience, working with students on the spectrum for about 15 years in 3 distinct phases of my career, females diagnosed with autism usually present differently than do males. Those who are diagnosticians and researchers tell me this is why females are often diagnosed at a later age than males or go undiagnosed or misdiagnosed.
Autism is indeed a spectrum. In my professional experience, working with students on the spectrum for about 15 years in 3 distinct phases of my career, females diagnosed with autism usually present differently than do males. Those who are diagnosticians and researchers tell me this is why females are often diagnosed at a later age than males or go undiagnosed or misdiagnosed.
That and SBC and his "extreme male brain" bullshit.
@Anteater I think discussing too much from wonderings has dangers. I hear some interesting anecdotes and without saying they have no value I am intersted in whether you have evidence for your concern that autism is over-diagnosed? Many conditions including asthma are more diagnosed as we become more aware of them. Are you concerned about all those conditions being overdiagnosed?
You care to elaborate on your cryptic comments, arethosemyfeet?
Simon Baron-Cohen posited that autism was an extreme version of the male brain, moving the association of autism with men and boys from the empirical to the theoretical, thus lending it more credence and discouraging clinicians from diagnosing women.
tl;dr a period of silence from SBC would be most welcome.
If I may intervene, @Caissa, I think @Arethosemyfeet was agreeing with the point you made (females diagnosed with autism usually present differently than do males) and adding that Simon Baron-Cohen’s suggestion that autism is an extreme version of the male brain is another factor which discourages clinicians from diagnosing autism in women.
If I may intervene, @Caissa, I think @Arethosemyfeet was agreeing with the point you made (females diagnosed with autism usually present differently than do males) and adding that Simon Baron-Cohen’s suggestion that autism is an extreme version of the male brain is another factor which discourages clinicians from diagnosing autism in women.
Are you concerned about all those conditions being overdiagnosed?
Yes it concerns me. My son, who like me has some characteristics often associated (rightly or wrongly) with autism, has been questioned but unlike me he finds the idea depressing, or at least he used to. Because he sees it as people saying there is something wrong with him. And I can well accept the idea that it is this impression that is the problem, although to me it is not totally unreasonable to say that diagnosis of a condition by a doctor normally implies there is something wrong, at least in the opinion of the doctor. You don't get diagnosed for being religious, or is that maybe the future? And I'm sure our minds work differently from the materialist.
And when you see, as in the program, people being diagnosed autistic who have to outward appearance had a totally normal life, one suspects people are trying hard to pin the diagnosis. I totally accept that in the program Christine seemed relieved to have the diagnosis and I wish the program had explored whether she felt her life would now change. And particularly whether she would try to negotiate a way to stop masking behaviour.
My suspicion is that Andrew like myself, is not a natural fitter-in, and in both our cases it is to do with the fact that neither of us were what you would call "boyish boys" and so found bonding using the traditional activities of ballgames and rough and tumble difficult.
But also as I have said many times, I can't see the utility of diagnoses covering such a huge range of outcomes.
I suppose I'm colour blind. In the old standard blob test I score 2 out of 50, and could never work with the old resistor colour code and have found some computer applications unusable because they try to visualise using finely gradated shades. But it has had no impact on my life.
I suppose the question I don't know how to answer is what the benefit of a diagnosis is, when it's life-impact gets progressively less serious.
I'm struggling to see what the problem with 'overdiagnosis' (which I don't think is actually a real phenomenon) would even be. It's not like a diagnosis of autism results in the prescription of medication that would cause a non-autistic person harm, since any medication would be for comorbidities rather than autism itself.
For many autistic adults the main benefit to a diagnosis would be reasonable adjustments in the workplace, eg a quieter work area or dimmed lighting/removal of fluorescent lighting. Also, many physical illnesses and conditions have a huge range of outcomes - for example, I'm hypermobile (what used to be called being double jointed) which is on the same spectrum as Ehlers Danlos syndrome, but the issues it causes me are far milder. It's still helpful to be able to understand it in that context. 'You seem normal so you can't be neurodiverse' is also used as a response to many neurodiverse people who would benefit from specific medication (eg for ADHD) or psychiatric support, as well as academic and workplace adjustments. This causes huge problems for women with ADHD in academia for instance.
For me, despite living a normal life and holding down a job (something that a lot of autistic people find very difficult), a diagnosis was valuable because it enabled me to stop blaming myself for various things.
Throughout my life, especially when I was younger, I felt like I had a sign above my head saying "weirdo. Don't interact unless you want to rip the piss". When enough people (like most of your year group at school) are telling you you're a stupid weirdo twat, you start believing it. When a majority of people regularly rip the piss out of the things you do or say, you come to believe that you really are a laughable loser who is fit only for ridicule.
I've always found that there are a proportion of people who dislike me almost immediately, before I really do or say anything. I think, now, I make them nervous because I don't react to things exactly as they expect. They perhaps misinterpret my inability to do small talk as a desire not to interact with them.
A diagnosis shed a light on that that said "it's OK; some people are different."
For me, despite living a normal life and holding down a job (something that a lot of autistic people find very difficult), a diagnosis was valuable because it enabled me to stop blaming myself for various things.
Throughout my life, especially when I was younger, I felt like I had a sign above my head saying "weirdo. Don't interact unless you want to rip the piss". When enough people (like most of your year group at school) are telling you you're a stupid weirdo twat, you start believing it. When a majority of people regularly rip the piss out of the things you do or say, you come to believe that you really are a laughable loser who is fit only for ridicule.
I've always found that there are a proportion of people who dislike me almost immediately, before I really do or say anything. I think, now, I make them nervous because I don't react to things exactly as they expect. They perhaps misinterpret my inability to do small talk as a desire not to interact with them.
A diagnosis shed a light on that that said "it's OK; some people are different."
I came at it from a slightly different route. I got told fairly young by my teacher that other kids were shitty to me (not exactly the words she used) because I was cleverer than them and I believed it, morphing slightly into the view that a fairly large number of people are just arseholes. Diagnosis allowed me to consider that while some people are indeed arseholes, others are just really rubbish at dealing with people outside their normal frame of reference.
For me, despite living a normal life and holding down a job (something that a lot of autistic people find very difficult), a diagnosis was valuable because it enabled me to stop blaming myself for various things.
Throughout my life, especially when I was younger, I felt like I had a sign above my head saying "weirdo. Don't interact unless you want to rip the piss". When enough people (like most of your year group at school) are telling you you're a stupid weirdo twat, you start believing it. When a majority of people regularly rip the piss out of the things you do or say, you come to believe that you really are a laughable loser who is fit only for ridicule.
I've always found that there are a proportion of people who dislike me almost immediately, before I really do or say anything. I think, now, I make them nervous because I don't react to things exactly as they expect. They perhaps misinterpret my inability to do small talk as a desire not to interact with them.
A diagnosis shed a light on that that said "it's OK; some people are different."
I came at it from a slightly different route. I got told fairly young by my teacher that other kids were shitty to me (not exactly the words she used) because I was cleverer than them and I believed it, morphing slightly into the view that a fairly large number of people are just arseholes. Diagnosis allowed me to consider that while some people are indeed arseholes, others are just really rubbish at dealing with people outside their normal frame of reference.
Oh that as well, but I got told that by my parents.
@Anteater, Christina McGuinness has been talking about her diagnosis and there is a book out about her experiences, it came out on 25 November, just before the TV programme was aired on 1st December. In this article from Good To Know, sorry, very gossipy for the Epiphanies board, it isn't just a regurgitation of the documentary, but includes other material, including stuff from Instagram and Loose Women, she says things like:
Christine details her diagnosis in her upcoming book A Beautiful Nightmare and spoke of how her childhood showed autism signs.
She told the panel “School was really, really difficult. I didn’t have friends, I didn’t really fit in. I wasn’t with the sporty group or with the drama group. I always felt older and felt happy talking to the teachers.”
Christine, who previously spoke of her anxiety over her children going back to school, left school aged 14 without any GSCEs, had bad attendance.
“That’s because I was struggling. I didn’t like eating in the canteen, I didn’t like the food.”
and
I didn’t do the exams I was capable of doing so then I left with no GCSEs.
“If I had been given a quiet room on my own that’s something that my children would get support with now.”
And the diagnosis is bittersweet for Christine who admits it’s helped her understand herself better but she said she was “absolutely devastated for the little girl,” she could have become.
@Anteater, Christina McGuinness has been talking about her diagnosis and there is a book out about her experiences, it came out on 25 November, just before the TV programme was aired on 1st December. In this article from Good To Know, sorry, very gossipy for the Epiphanies board, it isn't just a regurgitation of the documentary, but includes other material, including stuff from Instagram and Loose Women, she says things like:
Christine details her diagnosis in her upcoming book A Beautiful Nightmare and spoke of how her childhood showed autism signs.
She told the panel “School was really, really difficult. I didn’t have friends, I didn’t really fit in. I wasn’t with the sporty group or with the drama group. I always felt older and felt happy talking to the teachers.”
Christine, who previously spoke of her anxiety over her children going back to school, left school aged 14 without any GSCEs, had bad attendance.
“That’s because I was struggling. I didn’t like eating in the canteen, I didn’t like the food.”
and
I didn’t do the exams I was capable of doing so then I left with no GCSEs.
“If I had been given a quiet room on my own that’s something that my children would get support with now.”
And the diagnosis is bittersweet for Christine who admits it’s helped her understand herself better but she said she was “absolutely devastated for the little girl,” she could have become.
That sounds familiar. I didn't quite do so bad academically, but there's a bit of a disconnect between the 9 year old put into the top form of the year above, and the 15 year old six years later getting a motley collection of O Level grades, not to mention the ones I completely failed. And yes, that disconnect was a school environment that could neither understand nor provide for my needs.
Understanding years later why that happened was very valuable.
I don't know about over-diagnosis, but as one of the sort of people who might be thought of as over-diagnosed (married, children, good employment history) I can tell you I knew I was "not normal" by the time I was 6. So did everyone around me. If you want autism diagnosed on the cheap, finding out who are the main victims of bullying in any secondary school would be around 90% accurate. Other kids were really good at diagnosing it...
I don't know about over-diagnosis, but as one of the sort of people who might be thought of as over-diagnosed (married, children, good employment history) I can tell you I knew I was "not normal" by the time I was 6. So did everyone around me. If you want autism diagnosed on the cheap, finding out who are the main victims of bullying in any secondary school would be around 90% accurate. Other kids were really good at diagnosing it...
This. So much this. I'm in intermittent contact with one other boy, now man, from my school who had an even worse time than I did and he too now has a diagnosis.
Secondary school I worked at as a SENCo had a safe supervised lunchtime club. The boys playing Yu-Gi-Oh together tended to be those on the ASD spectrum. To the point if there were concerns about a kid and they'd found themselves there, they'd get booted up the list. (That secondary was known as being supportive for ASD and there were a lot already diagnosed.)
This is sounding a lot like my childhood, bullied at primary school - odd one out in secondary, in chess club (but very bad at it), wearing out my blazer pockets with books. Adult spare time spent on video games, magic the gathering and D&D. I have a statistically improbable number of autistic friends and acquaintances.
I am not diagnosed though, and I don’t think I’d meet criteria. I am not sure what to make of it really. I had an autistic lodger who tried to convince me I may be on the spectrum, and I did seriously discuss with someone I know who works in a diagnostic clinic - I come nowhere near cutoff on standard screening questionnaires.
Comments
Now, in the wake of Covid19, there are millions of people with post-Covid syndrome, looking very like CFS/ME with what sounds like very similar pathways. And NICE no longer recommends GET - BMJ article.
I don't think that's quite fair to, for example, Antoine Lavoisier. Make it 1750, and I might agree.
Well, I was initially thinking c1650 but decided to be generous.
(I got my daughter up and out of CFS/ME by building from a baseline, and when she was stable at that baseline adding 10% more, then waiting until she was stable at the new level before increasing the level of activity. The CFS/ME GET was not like that, it had a rigid exercise programme that people were made to follow, regardless of any relapses or before the strength had been built up at that level.)
And again, that's not "curing" Downs Syndrome. Medicating symptoms or accommodating needs isn't the same thing as curing the condition.
Terminology is pretty important. Words are the basis of communication.
A disease is the consequence of a foreign agent entering your body. You can eliminate the foreign agent and eliminate the disease.
A developmental disability is a condition you are born into, not something that happens to you.
Sometimes developmental disabilities can be the consequences of accidents, but in that case it's a fundamental change in the hardware of the body, usually the brain. And it's not something you can change just by eliminating an infectious agent and watching the body "heal" itself.
Generally, as noted, you can "cure" a disease, you cannot "cure" a disability.
And of course, a lot of autistic folks aren't exactly thrilled with being treated like they're "disabled" just because they don't always interface perfectly with "neurotypical" folks.
Here's an article if you're into that sort of thing.
The person with the disability, insofar as they can be trusted to express a clear opinion. If not, probably falls on whoever the legal guardian is.
Which is problematic because some parents of autistic kids are clueless and prone to abuse in search of a "cure".
And sometimes that is intentional abuse and not cluelessness. Let's not pretend that all parents of autistic and other neurodiverse children have their best interests at heart. Neurodiverse children are at huge risk of being injured or killed by their parents and caregivers. Religion, unfortunately, is a huge driver of this.
This is straying into ableist ways of talking see following host post - L Epiphanies Host
This seems to be settled doctrine among advocates. But, to my mind, it is silly. No man is an island. For example, if we are considering a work environment, the ability of the group to accomplish its task is paramount. How that is accomplished within the group may require the majority of the group to adjust or the source of the perturbation to do so. There is no reason to lift the desires of one person above everyone else that I can see.
Specifically wrt autism, there appears to be some real advances in recognizing the value such folks can add in, e.g., software development (my old field.) One way that a proper resolution of tensions can be brought about is by finding the value in our differences. This is not always possible, of course, but insisting that one person is more valuable than others by denying the impositions that they make on those others strikes me as both dishonest and self-defeating.
I think it is important to note that ABA, as originated by Lovaas is a different approach to Positive & Proactive Behavioural Support (PBS) - BILD video intro. The similar names can lead to confusion.
A behaviour is anything you say or do, behaviours of concern are often defined as
A lot of people with an intellectual disability also have autism, and that can lead to confusion in the minds of the general public and law makers as to what the needs of people with autism may actually be.
Indeed. Neurotypical folk frequently make impositions on the neurodiverse.
A reminder that we don't do ableism on this board. Autistic people and other non-neurotypical people are on this thread and posting. Folk can respectfully ask autistic people what they themselves think about the workplace and listen to their views. It's not a case of finding out from 'advocates' or just talking to or about 'advocates'. That is talking over people who are here and on this thread.
It's also necessary for posters speaking of or about non-neurotypical people to carefully avoid language which could be construed as contemptuous, pejorative or dehumanising eg.
Thanks
Louise
Epiphanies Host
Hosting off
Generally abusers don't appear that way to people who aren't their victims. Respectfully, you have no idea what those other parents are doing behind closed doors.
*And of course some less problematic things are called ABA too.
I am aware that some self-soothing behaviours can be harmful - banging a head against a wall can do damage - and I've seen that in a child I worked with, but the one that is regularly called out is the prevention of chewing soothing mechanisms rather than providing with a stimm pendant to chew on - see this example from Etsy (link)
Re @Arethosemyfeet 's point about goals, PBS is meant to avoid that - though obviously that is not a guarantee against poor practice.
Agreed, though it's very hard to find non-problematic rules for people who can't self advocate. I suppose, in that case, there'd be robust state guidelines for the care and handling of such a person.
I do think there are people for whom it is very difficult to achieve communication, but that is not saying they're of less value, or that efforts shouldn't be taken. And of course these are not representative of the entire spectrum of the autistic experience in humanity.
Self advocacy is always best when possible. Tread with extreme care otherwise, and I think that's one reason I'm really leery of the "Let's cure them!" approach with people for whom it may be difficult to get a clear sense of their desires vis a vis "curing." And the folks who are able to self advocate often seem to resist the idea that they have such a need, for quite sensible reasons.
Simon Baron Cohen featured in the film although he was not dominant. He gave the view, more or less as a fact, that autism is caused 100% by genes, and this led the McGuiness couple to take a test. The twist is that Christine McGuiness ended up with a diagnosis of autism. Loads of issues follow for me, the main ones being the variability of symptoms and the issue of masking which was very prominent in the program.
The issue of variability arises when you think that the couple have been together ten+ years without Paddy realising that his wife was autistic. It is true that Christine herself was not surprised and confessed to always having known there was 'something not quite right' and that she needed to more or less confect here life to fit in. Which is what masking is all about, and she obviously did it remarkably well.
The program stated that girls mask much better than boys, and although it did not say this, it could be that this is why autism was/is thought to be more common is males. Maybe it's just less concealable. But this seems to blow the idea that autism is a failure of empathy out of the water. To me, it is part of the essence of empathy to be sensitive to how others see you and to have the desire to adapt so as to establish good relationships.
But it also made me fear that autism is being over-diagnosed, and it is true that some have wandered if I could be on the spectrum. I have had to mask all my life, in the sense that I know aspects of my personality don't help social relations, so I need to make an effort to fit in.
But who hasn't? OK to varying degrees but the idea that we are social animals and that "fitting in" is just a part of learning how to live in community, makes sense to me. There have always been those where I fit in easily and others (more I would say) where I don't, and sometimes I couldn't care less, but sometimes I make the effort. But generally I would admit to being introverted, and as the popular expression goes "living too much in my head".
Of course were I to know Christine she might explain that my experience of masking is nothing like hers, and hardly merits the term. One thing that was really interesting was that Christine deliberately tried to game the questionnaire, but was found out.
For me, I could not come to any conclusion for a condition with such a wide range of variability.
This is why I wish I could divert it away from autism.
But I'm not a Host. Thanks be to God.
That and SBC and his "extreme male brain" bullshit.
Simon Baron-Cohen posited that autism was an extreme version of the male brain, moving the association of autism with men and boys from the empirical to the theoretical, thus lending it more credence and discouraging clinicians from diagnosing women.
tl;dr a period of silence from SBC would be most welcome.
Thank you. That was indeed my point.
And when you see, as in the program, people being diagnosed autistic who have to outward appearance had a totally normal life, one suspects people are trying hard to pin the diagnosis. I totally accept that in the program Christine seemed relieved to have the diagnosis and I wish the program had explored whether she felt her life would now change. And particularly whether she would try to negotiate a way to stop masking behaviour.
My suspicion is that Andrew like myself, is not a natural fitter-in, and in both our cases it is to do with the fact that neither of us were what you would call "boyish boys" and so found bonding using the traditional activities of ballgames and rough and tumble difficult.
But also as I have said many times, I can't see the utility of diagnoses covering such a huge range of outcomes.
I suppose I'm colour blind. In the old standard blob test I score 2 out of 50, and could never work with the old resistor colour code and have found some computer applications unusable because they try to visualise using finely gradated shades. But it has had no impact on my life.
I suppose the question I don't know how to answer is what the benefit of a diagnosis is, when it's life-impact gets progressively less serious.
For many autistic adults the main benefit to a diagnosis would be reasonable adjustments in the workplace, eg a quieter work area or dimmed lighting/removal of fluorescent lighting. Also, many physical illnesses and conditions have a huge range of outcomes - for example, I'm hypermobile (what used to be called being double jointed) which is on the same spectrum as Ehlers Danlos syndrome, but the issues it causes me are far milder. It's still helpful to be able to understand it in that context. 'You seem normal so you can't be neurodiverse' is also used as a response to many neurodiverse people who would benefit from specific medication (eg for ADHD) or psychiatric support, as well as academic and workplace adjustments. This causes huge problems for women with ADHD in academia for instance.
Throughout my life, especially when I was younger, I felt like I had a sign above my head saying "weirdo. Don't interact unless you want to rip the piss". When enough people (like most of your year group at school) are telling you you're a stupid weirdo twat, you start believing it. When a majority of people regularly rip the piss out of the things you do or say, you come to believe that you really are a laughable loser who is fit only for ridicule.
I've always found that there are a proportion of people who dislike me almost immediately, before I really do or say anything. I think, now, I make them nervous because I don't react to things exactly as they expect. They perhaps misinterpret my inability to do small talk as a desire not to interact with them.
A diagnosis shed a light on that that said "it's OK; some people are different."
I came at it from a slightly different route. I got told fairly young by my teacher that other kids were shitty to me (not exactly the words she used) because I was cleverer than them and I believed it, morphing slightly into the view that a fairly large number of people are just arseholes. Diagnosis allowed me to consider that while some people are indeed arseholes, others are just really rubbish at dealing with people outside their normal frame of reference.
Oh that as well, but I got told that by my parents.
and
That sounds familiar. I didn't quite do so bad academically, but there's a bit of a disconnect between the 9 year old put into the top form of the year above, and the 15 year old six years later getting a motley collection of O Level grades, not to mention the ones I completely failed. And yes, that disconnect was a school environment that could neither understand nor provide for my needs.
Understanding years later why that happened was very valuable.
I don't know about over-diagnosis, but as one of the sort of people who might be thought of as over-diagnosed (married, children, good employment history) I can tell you I knew I was "not normal" by the time I was 6. So did everyone around me. If you want autism diagnosed on the cheap, finding out who are the main victims of bullying in any secondary school would be around 90% accurate. Other kids were really good at diagnosing it...
This. So much this. I'm in intermittent contact with one other boy, now man, from my school who had an even worse time than I did and he too now has a diagnosis.
I am not diagnosed though, and I don’t think I’d meet criteria. I am not sure what to make of it really. I had an autistic lodger who tried to convince me I may be on the spectrum, and I did seriously discuss with someone I know who works in a diagnostic clinic - I come nowhere near cutoff on standard screening questionnaires.