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Autism Spectrum Disorders (ASD): Compendium Thread

Frideswide said:
Not quite :)

It's a pervasive developmental disorder, but there are at least three er... "prongs" to the way NTs discern it :) For example a talent for systemising, less need for time-consuming social ritual that allistics enjoy so much, and a positive enjoyment of repetition and routine. All of these things to a degree where there is friction between the outside world's expectations and the inner world's delight and creativity.

Which means that autistics have a very poor life expectancy compared to those allistics, especially the NTs. https://www.nhs.uk/news/neurology/people-with-autism-are-dying-younger-warns-study/

The combination of autism and the common co-morbids can make life very difficult - learning differences/disabilities, epilepsy, neurofibromatosis, connective tissue disorders and so on.

Edited becuase I missed out half a sentence! :)
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I'm happy to be corrected. I have no direct experience here.
 
This thread is being established to contain discussions relating to ASD, which includes autism, Asperger's, and Pervasive Developmental Disorder, not otherwise specified (PDD-NOS).
 
that 2011 article announces a pilot study, if it went ahead what were the results
 
Dropship said:
The label "autistic" seems to be a new thing, as I don't think we'd ever heard the word back in the 1960's/70's, but it seems much more common nowadays, so maybe mass immunisation programs can cause it like some people have suggested?
But regarding autism generally, if a kid's a bit slow or eccentric, so what?
A woman in a chat room a couple of years ago said- "I'm fed up with my young autistic son, he's going through a 'Bob the Builder' phase and keeps wanting me to buy him Bob the Builder books and toys and things".
So I said- "Well just buy them for him then, and stop your nagging".
She never replied, so maybe I'd made her see sense, I dunno.
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I know several people who have various degrees of autism.

One particularly close friend had his entire school career blighted by his inability to cope with certain situations. He was finally diagnosed when it was too late to get back on track with his education. He is one of the nicest and most decent people I know: kind, intelligent, articulate (within the limits of his level of education) and with a great, if basic, sense of humour. He has learned how to recognise and control his worst reactions, usually by withdrawing himself from the situation, but life is a battle for him and, now in his 30s, he still needs support.

Another friend with Asperger's did well at school and university and is working in finance in the city of London. At first meeting, you would probably not know he was autistic. However, he struggles more than most people with certain kinds of social situation, and it has led to severe anxiety, depression and also to physical health problems.

Another is still a child, and although she can be intelligent and cheeky like most kids, she is non verbal (never speaks) and has to wear a nappy (US = diaper) at school. She is generally quiet and well behaved, but when she has a melt down, it is of cataclysmic proportions and it is impossible to communicate with her or console her for a very long time.

My first point, therefore, is that "autism" is such a wide spectrum that the term is of limited utility. If I tell you that Peter is autistic, or that Jenny has Asperger's syndrome, you will know very little about what you will find when you meet Peter or Jenny.

At one time, there was a list of 11 diagnostic criteria for Asperger's syndrome, and the diagnosis was "confirmed" if the subject exhibited 5 of them. That meant in theory that 2 people could each have a diagnosis of Asperger's and yet have no shared symptoms. This sounds ridiculous. However, it is less so when you factor in that some symptoms are "core" to the syndrome, and that others are peripheral. There would always be an overlap of core symptoms.

Autism is not just a kid being "a bit slow or eccentric." Indeed, I could have found this comment offensive, had I not accepted that you did not intend to cause offence.

Many autistic kids are exceptionally quick and bright in some areas. My friend (first on the list above) could do mental arithmetic far faster than I could, although he struggled with simple spelling. Similarly, many eccentric people have no syndrome.

You are certainly right that we didn't hear much about autism and Asperger's until the 1970s. That has a lot to do with the mores of the times.

In 1978, I had a school friend who was officially labelled (and had been told) that he was "ESN" which stood for "Educationally Sub Normal."

Looking back from 2019, this is horrifying. We may sometimes be irritated by "political correctness" but surely anyone can see that telling a kid they have "special needs" or "learning difficulties" is less damaging than telling them they are "subnormal".

In 1978, although none of us would have beaten up a black kid for racist reasons, and we mixed freely with black and Asian kids on a perfectly equal basis, racist language was common and widely accepted. Similarly, we all used quite offensive terms for physically and mentally disabled people, although this would not have been reflected in our behaviour towards such people. They were very different times. I look back and cringe.

The pendulum has swung a long way since then. It is great that there is now a wider public understanding of conditions like autism, Asperger's, ADHD, and a range of physical and mental disabilities and disorders.

However, there is also a tenable argument that we have reached a stage of "over diagnosis" where almost anything that is in the bottom 5% of the bell curve of "normal" is likely to be given a label, and even medicalised.

A further problem is flippant self-diagnosis:
  • "I'm a bit autistic." No, you're not: you just show a lot of attention to detail, and don't like crowds.
  • "It's my OCD again." No it isn't. You just like things tidy. OCD is a serious and debilitating condition that ruins lives.
  • "I think Jimmy has ADHD." No, Jimmy is a lively kid and his parents haven't set him proper boundaries. ADHD is a real thing, but so is "just being a naughty kid."
  • "I've got a touch of dyslexia." No, you just never learned to spell, and you're too lazy to read much. Dyslexia is far more complex, and does not just relate to reading.
This sort of comment can be damaging because it trivialises conditions that can have serious consequences for people who really have them. They can lead to the mindset that "Yeah yeah, everyone's somewhere on the spectrum," which can lead to a damaging degree of scepticism when someone tells you that their child has a syndrome.

One final comment: parents of kids with hidden disabilities (Asperger's, Ehlers Danlos, OCD or OCBD, and so on) are heartily sick of people who have no relevant knowledge or experience trying to "make them see sense."

Parenting is hard, but being a parent of a child with autism is a daily battle: with the kid's symptoms, with the kids other "normal" needs, with your own other duties and commitments, and, sadly, with the ignorance and hostility of some members of the public, work colleagues, and even friends and family.
 
Mikefule said:
One final comment: parents of kids with hidden disabilities (Asperger's, Ehlers Danlos, OCD or OCBD, and so on) are heartily sick of people who have no relevant knowledge or experience trying to "make them see sense."
Click to expand...

hear hear!

You can imagine how the people with those diagnoses feel about it. :chain:

It might help if people could read back in a thread like this one - rather than just launching in.
 
henry said:
what happened to the mmr/autism controversy thread
Click to expand...

The MMR Vaccine and Its Alleged Negative Effects
https://forums.forteana.org/index.php?threads/the-mmr-vaccine-and-its-alleged-negative-effects.2601/

It's now been disengaged from general discussion about ASD / ADHD. This is now the thread for general discussion of ASD, and ADD / ADHD has been given its own thread:

Attention Deficit (ADD; ADHD)
https://forums.forteana.org/index.php?threads/attention-deficit-add-adhd.65358/
 
henry said:
its blocked ?
Click to expand...

It's temporarily closed to prevent latecomers from adding any more ASD posts to it.

Do you have something to post about vaccines?
 
that thread was specifically about MMR/autism controversy resultant from the wakefield report etc
 
henry said:
that thread was specifically about MMR/autism controversy resultant from the wakefield report etc
Click to expand...

... And - given the gnat-scale attention span of posters over the years - became the dumping ground for all general discussion of autism / Asperger's / ASD. Meanwhile, the MMR mania branched out to accuse the vaccine of triggering other maladies and effects besides autism.

We now have one thread for MMR and its purported evils (including autism), and we have a separate thread for discussing ASD per se. In addition, a dedicated thread on ADD / ADHD was started using other tangential bits from the MMR and other threads.
 
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Mikefule said:
I know several people who have various degrees of autism.

One particularly close friend had his entire school career blighted by his inability to cope with certain situations. He was finally diagnosed when it was too late to get back on track with his education. He is one of the nicest and most decent people I know: kind, intelligent, articulate (within the limits of his level of education) and with a great, if basic, sense of humour. He has learned how to recognise and control his worst reactions, usually by withdrawing himself from the situation, but life is a battle for him and, now in his 30s, he still needs support.

Another friend with Asperger's did well at school and university and is working in finance in the city of London. At first meeting, you would probably not know he was autistic. However, he struggles more than most people with certain kinds of social situation, and it has led to severe anxiety, depression and also to physical health problems.

Another is still a child, and although she can be intelligent and cheeky like most kids, she is non verbal (never speaks) and has to wear a nappy (US = diaper) at school. She is generally quiet and well behaved, but when she has a melt down, it is of cataclysmic proportions and it is impossible to communicate with her or console her for a very long time.

My first point, therefore, is that "autism" is such a wide spectrum that the term is of limited utility. If I tell you that Peter is autistic, or that Jenny has Asperger's syndrome, you will know very little about what you will find when you meet Peter or Jenny.

At one time, there was a list of 11 diagnostic criteria for Asperger's syndrome, and the diagnosis was "confirmed" if the subject exhibited 5 of them. That meant in theory that 2 people could each have a diagnosis of Asperger's and yet have no shared symptoms. This sounds ridiculous. However, it is less so when you factor in that some symptoms are "core" to the syndrome, and that others are peripheral. There would always be an overlap of core symptoms.

Autism is not just a kid being "a bit slow or eccentric." Indeed, I could have found this comment offensive, had I not accepted that you did not intend to cause offence.

Many autistic kids are exceptionally quick and bright in some areas. My friend (first on the list above) could do mental arithmetic far faster than I could, although he struggled with simple spelling. Similarly, many eccentric people have no syndrome.

You are certainly right that we didn't hear much about autism and Asperger's until the 1970s. That has a lot to do with the mores of the times.

In 1978, I had a school friend who was officially labelled (and had been told) that he was "ESN" which stood for "Educationally Sub Normal."

Looking back from 2019, this is horrifying. We may sometimes be irritated by "political correctness" but surely anyone can see that telling a kid they have "special needs" or "learning difficulties" is less damaging than telling them they are "subnormal".

In 1978, although none of us would have beaten up a black kid for racist reasons, and we mixed freely with black and Asian kids on a perfectly equal basis, racist language was common and widely accepted. Similarly, we all used quite offensive terms for physically and mentally disabled people, although this would not have been reflected in our behaviour towards such people. They were very different times. I look back and cringe.

The pendulum has swung a long way since then. It is great that there is now a wider public understanding of conditions like autism, Asperger's, ADHD, and a range of physical and mental disabilities and disorders.

However, there is also a tenable argument that we have reached a stage of "over diagnosis" where almost anything that is in the bottom 5% of the bell curve of "normal" is likely to be given a label, and even medicalised.

A further problem is flippant self-diagnosis:
  • "I'm a bit autistic." No, you're not: you just show a lot of attention to detail, and don't like crowds.
  • "It's my OCD again." No it isn't. You just like things tidy. OCD is a serious and debilitating condition that ruins lives.
  • "I think Jimmy has ADHD." No, Jimmy is a lively kid and his parents haven't set him proper boundaries. ADHD is a real thing, but so is "just being a naughty kid."
  • "I've got a touch of dyslexia." No, you just never learned to spell, and you're too lazy to read much. Dyslexia is far more complex, and does not just relate to reading.
This sort of comment can be damaging because it trivialises conditions that can have serious consequences for people who really have them. They can lead to the mindset that "Yeah yeah, everyone's somewhere on the spectrum," which can lead to a damaging degree of scepticism when someone tells you that their child has a syndrome.

One final comment: parents of kids with hidden disabilities (Asperger's, Ehlers Danlos, OCD or OCBD, and so on) are heartily sick of people who have no relevant knowledge or experience trying to "make them see sense."

Parenting is hard, but being a parent of a child with autism is a daily battle: with the kid's symptoms, with the kids other "normal" needs, with your own other duties and commitments, and, sadly, with the ignorance and hostility of some members of the public, work colleagues, and even friends and family.
Click to expand...
Nice post.
P.S.
Mikefule said:
"I'm a bit autistic." No, you're not: you just show a lot of attention to detail, and don't like crowds.
Click to expand...
That's just introverted, like 50% of the population (more or less).
 
As people have said, autism can be difficult to diagnose in many cases; for example my late father probably thought I was autistic because as a kid I once overheard him saying to my mother- "He's nutty! No don't laugh, I really do mean it, he sits up in his room all the time making silly plastic model aeroplane kits!"
Perhaps he'd have preferred me to join a gang instead and run the streets getting in trouble with the law?
PS- Naturally I ignored him and carried on modelling because I knew he was full of sh*t, in fact I've got my eye on a Nam Skyraider down the model shop right now..:)
 
Mikefule said:
... Parenting is hard, but being a parent of a child with autism is a daily battle: with the kid's symptoms, with the kids other "normal" needs, with your own other duties and commitments, and, sadly, with the ignorance and hostility of some members of the public, work colleagues, and even friends and family.
Click to expand...

I'll admit I decided it wasn't going to be a battle. Just everyday reality. It was hardest when he lost all his words, at around 14 months, and then screamed all day for 3 or 4 years. Although 'all day' was only a few hours because he spent most of his time asleep... Slowly, as he got help - much of it via his special school who were fecking amazing - the screaming stopped and the speaking started again. We never could have guessed he'd get a degree and live a pretty ordinary life - looking at the child he was, compared to the adult he is. Although we still feel a sense of loss that he isn't the person he might have been (he started out 'typical' in every way). And that we'll never know that person. But the person he is, is fantastic. Sometimes he is hard to 'handle' in that even now we are usually on eggshells, careful what we say and do so as not to trigger anything - but again, we decided early on that was our normality.

I refuse to define any part of my identity in terms of 'heroic struggle' or 'parent of autistic young man', from day to day, IRL. Although I think some - OK, will be honest - many - parents start to define themselves by their child's disability, and get defensive because the rest of the world can't immediately see it. My son has been lucky in that he's unusually goodlooking and very, very tall. Which means someone meeting him for the first time, who doesn't know about his autism (and they won't because he refuses to tell anyone) will want to be on the right side of him - for those superficial kind of reasons. And it's played in his favour.

He has also grown up not in denial - he sometimes finds his autistic characteristics intensely frustrating and upsetting - but at the same time, there are limitations he refuses to accept. I'll admit though, when he was a young child, rather than buy into the 'struggle' thing, I just had a 'feck you' attitude to people in general, out shopping etc, who didn't understand why this red faced toddler/young kid was screaming. I just faced it out and took my dad's old motto from the paratroopers: 'Never explain, never complain, never volunteer' - well I did the last one, for a related charity for some time. But no explanations to strangers, just brazenly faced them down with a glare. I had friends with autistic kids (via the charity I volunteered for, as we helped and met a lot of parents) who took the opposite tactic - always trying to alert people out and about their kid had a disability. I'll admit I just thought feck it, and probably that has paid off as our son is now doing so well.
 
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Dropship said:
As people have said, autism can be difficult to diagnose in many cases; for example my late father probably thought I was autistic because as a kid I once overheard him saying to my mother- "He's nutty! No don't laugh, I really do mean it, he sits up in his room all the time making silly plastic model aeroplane kits!"
Perhaps he'd have preferred me to join a gang instead and run the streets getting in trouble with the law?
PS- Naturally I ignored him and carried on modelling because I knew he was full of sh*t, in fact I've got my eye on a Nam Skyraider down the model shop right now..:)
Click to expand...

My brother and husband did that as kids and neither are on the spectrum. :D

If you've ever seen Peep Show... I think you only have to worry about model making when you find yourself in the local model shop eyeing up F.D.Roosevelt action figures...
 
A friend who was diagnosed as ASD as an adult and relatively recently pointed out: "on the internet, everyone is autistic", his point is: in text only communication, subtlety and nuance are all but obliterated and people double down on their positions.

See: any political discussion or almost any comments section.
 
Ogdred Weary said:
A friend who was diagnosed as ASD as an adult and relatively recently pointed out: "on the internet, everyone is autistic", his point is: in text only communication, subtlety and nuance are all but obliterated and people double down on their positions.

See: any political discussion or almost any comments section.
Click to expand...
I struggle a bit with that stance (and I can play the same card - my neurodivergence is also a relatively recent revelation), because what it's actually saying is that only autistic people struggle with communication, subtlety and nuance in face-to-face situations. That is a huge over-generalisation. It also doesn't account for the numbers of people I've met who I presume are NT and who struggle with such interactions (present company excepted - you're all clearly high-functioning NTs :cool:), never mind the ones who seem to be gravely lacking in empathy.
 
Krepostnoi said:
I struggle a bit with that stance (and I can play the same card - my neurodivergence is also a relatively recent revelation), because what it's actually saying is that only autistic people struggle with communication, subtlety and nuance in face-to-face situations. That is a huge over-generalisation. It also doesn't account for the numbers of people I've met who I presume are NT and who struggle with such interactions (present company excepted - you're all clearly high-functioning NTs :cool:), never mind the ones who seem to be gravely lacking in empathy.
Click to expand...

He was making it as a glib simplification, in a "this is kinda-sorta of broadly true" jokey way. That's kind of how I intended it too, looking back I didn't really communicate that.
 
Ogdred Weary said:
He was making it as a glib simplification, in a "this is kinda-sorta of broadly true" jokey way. That's kind of how I intended it too, looking back I didn't really communicate that.
Click to expand...
She might not thank me for sharing this, but my wife (who grew up in Russia) has been known to remark that all British people are autistic, given their emotional illiteracy and general inability to convey their opinions straightforwardly, rather than covered to the point of opacity in a blanket of irony, understatement and self-deprecation. She's very much being tongue-in-cheek, and it sounds like your friend is coming from a very similar sort of direction.
 
Krepostnoi said:
She might not thank me for sharing this, but my wife (who grew up in Russia) has been known to remark that all British people are autistic, given their emotional illiteracy and general inability to convey their opinions straightforwardly, rather than covered to the point of opacity in a blanket of irony, understatement and self-deprecation. She's very much being tongue-in-cheek, and it sounds like your friend is coming from a very similar sort of direction.
Click to expand...

His wife is Italian, part of his diagnosis was his wife being interviewed about his behaviour, when she was asked if she had noticed any "unusual" behaviour" she said replied: "I just thought he was being British".

He himself argues that Britishness/Englishness is a form of autism, with tongue firmly placed in cheek of course.
 
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