4 ms·

I'm not even sure what passes for "autism" these days. Back in the late 90s I helped out at a tiny charity that helped out family's of severely disabled kids. T

I'm not even sure what passes for "autism" these days. Back in the late 90s I helped out at a tiny charity that helped out family's of severely disabled kids. They would be utterly dependent on their parents for everything and needed constant supervision. Almost all were non-verbal. Due to the fact that many of them had genetic conditions, they had a bunch of health problems and also looked different to other kids their age. But I remember one kid, he was about 7, looked "normal" and had no other medical issues, but needed constant supervision and was non-verbal. I asked what was wrong with him. "He's autistic". My understanding of autism is a mix of that kid and Kim Peak (the real person behind the Rain Man movie). Fast forward to this century. I've had full conversations with successful people, who announce that they're autistic. Which austism is this article talking about and how exactly is it diagnosed?

ddmf 3y ago
Kim Peak wasn't even autistic. Have a look at the DSM or ICD diagnosis criteria https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences https://www.autism.org.uk/advice-and-guidance/topics/diagnos...
- InSteady 3y ago
  >Kim Peak wasn't even autistic. That is a weird thing to say. He was misdiagnosed. He has FG syndrome.
  - InSteady 3y ago
    Oops. This was not a weird thing to say, I misunderstood.
Doxin 3y ago
Both autisms are the same autism. They call autism a spectrum disorder, which essentially boils down to quite wide variations in symptoms. For any of the related symptoms in the list any specific autist may have that symptom a lot, a little, or not at all. The reason you see more "normal" for a lack of a better word people with autism these days is because we've gotten better at diagnosing the less visible issues. Someone who's non-verbal is pretty easy to spot. Someone who's verbal but doesn't show facial expressions "correctly", doesn't understand sarcasm, has a strong sense of justice, and overly detail oriented might be a lot harder to spot at a glance. Indeed most people would just mentally file such a person under "bit of an oddball". Take me for a more concrete example. I've got autism, but most people are rather surprised when I tell them, even if I've known them for years. I tend to not tell people before they know me very well, because I find it taints their perception of me. I'm generally fairly successful. I've got a home, a job, and a dog. On the other hand I struggle almost daily with identifying feelings I have. I'll often not even notice if I'm stressed for example, until I start getting random sore muscles because I've been tensing them all day. I'm super nervous in social situations I've not been in before. It feels like being part of a play but having never gotten the script and the audience is ready to laugh at any tiny mistake. I'll often misinterpret open questions, to the point where these days I'll often just refuse to answer without clarification. I'm quite picky with expectations, especially regarding food. I'll often talk over people without noticing. This sometimes upsets people, but if I try not to I just end up never getting a turn in conversation. I never know how long to keep eye contact. Do I look away too much? am I staring? I don't like getting touched unexpectedly. A simple touch on the elbow to get my attention is jarring to me. I'm often unable to ignore repetitive noises, especially if there's no pattern to the noise -- the clanging of the pipes the dishwasher generates is currently the bane of my existence. I try to plan everything into excruciating detail, which generally doesn't work anyways. I need to carefully pace myself to not run out of energy halfway through the day and have all the symptoms get worse for the rest of the day. Rooms with echo or reverb tire me out in a hurry. I'm frequently annoyed by people trying to "interpret" what I say instead of taking it at face value. I could go on and on, but my point is that it's entirely possible to seem perfectly normal outwardly and yet have a lot of hidden problems. I -- and a lot of other autistic people -- have been trying to fit in with "normal" people all my life, it's hardly surprising I've gotten good at seeming normal.
movpasd 3y ago
Autism exists on a multi-dimensional spectrum. Dimensions include restricted interests, anxiety, social awkwardness, difficulty reading faces, sensory processing issues, unusual motor of verbal behaviour, among many others. You can think of these characteristics among all people as being distributed like bell curves, and we use the word autism to describe people who are on the tail ends of these. This can also be described as "having autistic traits". These characteristics tend to be correlated, as well as with neurological differences. But it's important to remember that they are blurry distributions, and also that every autistic person will lie in different points along these characteristics. It's even somewhat conceivable for two people to be autistic and share no autistic traits. Autism is not by itself a pathology. However, if an autistic trait is especially pronounced, it might cause clinically significant impediment to a person's ability to take care of themselves or integrate with society (especially modern society — more on that later). We can then speak of ASD, or Autism Spectrum Disorder, which is a clinically recognised diagnosis. Many people with ASD also have a learning disability, but certainly not all. While many difficulties autistic people face are intrinsic to autism, a significant proportion also come from stigma. Modern society is conformist, especially in the working world, and the natural needs, behaviours, and mannerisms of autistic people can conflict with expectations of professionalism or convention. So, high-functioning autistic people have a tendency to consciously or unconsciously learn to imitate neurotypical behaviour, sometimes at great expense in terms of energy and self-identity. This is called "masking". It's a matter of definition whether we use the word "autism" to refer to this cluster of traits or the clinically significant disorder. Indeed, I think the word used to refer exclusively to the disorder, and it remains controversial. Many people, especially carers of people with low-functioning ASD, feel that saying autism is not an illness trivialises the genuine difficulties they experience. I am very sympathetic to this, but ultimately, I think that without this word "autism", many otherwise fully independently functioning people who fall under the umbrella are left with a void to explain their feeling of difference and social exclusion, and it is bad for society as well, as it pushes autistic people to suppress traits that could potentially be extremely valuable. So, I advocate for this autism vs ASD distinction. But reasonable people can disagree. I hope you found this useful as a primer on autism, or at least of this autistic person's understanding of it!
Kiuhrly1 3y ago
> Fast forward to this century. I've had full conversations with successful people, who announce that they're autistic. People often change a lot over the years. I know people who had serious difficulties as a child who now function "normally" within society.
- raffraffraff 3y ago
  Same. In fact I know one girl who was mute for her first 3 years. She won't shut up now. I'm dead serious.
GoblinSlayer 3y ago
The article uses it as a synonym for neurodiverse people.
- hezralig 3y ago
  It does not.
hkt 3y ago
My son is 7 and nonverbal, as in your example, and I share much the same problem with the widening of the definition of autism. My partner - a successful academic - is also autistic, in the manner of your other examples. As with any term that has become too wide to be useful, it needs subdividing. There used to be autism and aspergers, high functioning autism and low functioning autism, etc. Each classification had its problems but the general idea wasn't wrong: there has to be a term for people who need support and can't function without it, to differentiate between them and the high flyers (or even just "getting by OK") and to my mind "high needs autism" is the right term. The definitions of autism as I understand them are.. interesting. The reason a highly successful person can be diagnosed is because the diagnostic criteria - usually the triad of impairments - specify a person must have difficulties but tend not to describe a way of categorising the level of those difficulties. By way of example, I might have difficulty knowing what to say to a person (social interaction) in an unfamiliar setting (social imagination) which could manifest itself as me awkwardly interacting in a way that isn't called for, but which is recognised as social awkwardness. Some autistic people may freeze - sometimes in terror - and simply stop responding while they try to work out what to do. Imagine how it feels to be lost for words, and then some. To my knowledge, both examples above fulfil the criteria because they're both social difficulties. I'd recommend reading more about the diagnostic criteria and interrogating the range of problems people can face. To me, the dividing line is independence. I'd suggest starting there in your thinking, but not forgetting that autism can also be a hidden disability insofar AW support needs might be invisible to the people around.
- raffraffraff 3y ago
  I absolutely agree with you about where the dividing line is. Your experience reminds me of an article my wife read out to me a while back. It was written by a guy who has an autism diagnosis. He brother is also autistic, but low functioning. And likewise he said that it's hurting his brother that there are thousands of people out there claiming to be autistic, whose symptoms are little more debilitating than social anxiety. It causes people to disregard the condition and underestimate the huge effort that families have to put in to care for an autistic child. Similarly, charities that accept donations for autism... Who gets that? The author of the piece that my wife read, said that he needs nothing, but his brother needs constant care.
ahazred8ta 3y ago
Well, they've recently identified several brain structural abnormalities which have slightly different symptom patterns, all of which fit within a generalized 'autism' diagnosis. They're hoping this will lead to individualized treatment. https://news.weill.cornell.edu/news/2023/04/four-different-autism-subtypes-identified-in-brain-study https://news.weill.cornell.edu/news/2023/04/four-different-a...

ddmf 3y ago

Kim Peak wasn't even autistic. Have a look at the DSM or ICD diagnosis criteria https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences https://www.autism.org.uk/advice-and-guidance/topics/diagnos...

InSteady 3y ago
>Kim Peak wasn't even autistic. That is a weird thing to say. He was misdiagnosed. He has FG syndrome.
- InSteady 3y ago
  Oops. This was not a weird thing to say, I misunderstood.

Doxin 3y ago

Both autisms are the same autism. They call autism a spectrum disorder, which essentially boils down to quite wide variations in symptoms. For any of the related symptoms in the list any specific autist may have that symptom a lot, a little, or not at all. The reason you see more "normal" for a lack of a better word people with autism these days is because we've gotten better at diagnosing the less visible issues. Someone who's non-verbal is pretty easy to spot. Someone who's verbal but doesn't show facial expressions "correctly", doesn't understand sarcasm, has a strong sense of justice, and overly detail oriented might be a lot harder to spot at a glance. Indeed most people would just mentally file such a person under "bit of an oddball". Take me for a more concrete example. I've got autism, but most people are rather surprised when I tell them, even if I've known them for years. I tend to not tell people before they know me very well, because I find it taints their perception of me. I'm generally fairly successful. I've got a home, a job, and a dog. On the other hand I struggle almost daily with identifying feelings I have. I'll often not even notice if I'm stressed for example, until I start getting random sore muscles because I've been tensing them all day. I'm super nervous in social situations I've not been in before. It feels like being part of a play but having never gotten the script and the audience is ready to laugh at any tiny mistake. I'll often misinterpret open questions, to the point where these days I'll often just refuse to answer without clarification. I'm quite picky with expectations, especially regarding food. I'll often talk over people without noticing. This sometimes upsets people, but if I try not to I just end up never getting a turn in conversation. I never know how long to keep eye contact. Do I look away too much? am I staring? I don't like getting touched unexpectedly. A simple touch on the elbow to get my attention is jarring to me. I'm often unable to ignore repetitive noises, especially if there's no pattern to the noise -- the clanging of the pipes the dishwasher generates is currently the bane of my existence. I try to plan everything into excruciating detail, which generally doesn't work anyways. I need to carefully pace myself to not run out of energy halfway through the day and have all the symptoms get worse for the rest of the day. Rooms with echo or reverb tire me out in a hurry. I'm frequently annoyed by people trying to "interpret" what I say instead of taking it at face value. I could go on and on, but my point is that it's entirely possible to seem perfectly normal outwardly and yet have a lot of hidden problems. I -- and a lot of other autistic people -- have been trying to fit in with "normal" people all my life, it's hardly surprising I've gotten good at seeming normal.

movpasd 3y ago

Autism exists on a multi-dimensional spectrum. Dimensions include restricted interests, anxiety, social awkwardness, difficulty reading faces, sensory processing issues, unusual motor of verbal behaviour, among many others. You can think of these characteristics among all people as being distributed like bell curves, and we use the word autism to describe people who are on the tail ends of these. This can also be described as "having autistic traits". These characteristics tend to be correlated, as well as with neurological differences. But it's important to remember that they are blurry distributions, and also that every autistic person will lie in different points along these characteristics. It's even somewhat conceivable for two people to be autistic and share no autistic traits. Autism is not by itself a pathology. However, if an autistic trait is especially pronounced, it might cause clinically significant impediment to a person's ability to take care of themselves or integrate with society (especially modern society — more on that later). We can then speak of ASD, or Autism Spectrum Disorder, which is a clinically recognised diagnosis. Many people with ASD also have a learning disability, but certainly not all. While many difficulties autistic people face are intrinsic to autism, a significant proportion also come from stigma. Modern society is conformist, especially in the working world, and the natural needs, behaviours, and mannerisms of autistic people can conflict with expectations of professionalism or convention. So, high-functioning autistic people have a tendency to consciously or unconsciously learn to imitate neurotypical behaviour, sometimes at great expense in terms of energy and self-identity. This is called "masking". It's a matter of definition whether we use the word "autism" to refer to this cluster of traits or the clinically significant disorder. Indeed, I think the word used to refer exclusively to the disorder, and it remains controversial. Many people, especially carers of people with low-functioning ASD, feel that saying autism is not an illness trivialises the genuine difficulties they experience. I am very sympathetic to this, but ultimately, I think that without this word "autism", many otherwise fully independently functioning people who fall under the umbrella are left with a void to explain their feeling of difference and social exclusion, and it is bad for society as well, as it pushes autistic people to suppress traits that could potentially be extremely valuable. So, I advocate for this autism vs ASD distinction. But reasonable people can disagree. I hope you found this useful as a primer on autism, or at least of this autistic person's understanding of it!

Kiuhrly1 3y ago

> Fast forward to this century. I've had full conversations with successful people, who announce that they're autistic. People often change a lot over the years. I know people who had serious difficulties as a child who now function "normally" within society.

raffraffraff 3y ago
Same. In fact I know one girl who was mute for her first 3 years. She won't shut up now. I'm dead serious.

GoblinSlayer 3y ago

The article uses it as a synonym for neurodiverse people.

hezralig 3y ago
It does not.

hkt 3y ago

My son is 7 and nonverbal, as in your example, and I share much the same problem with the widening of the definition of autism. My partner - a successful academic - is also autistic, in the manner of your other examples. As with any term that has become too wide to be useful, it needs subdividing. There used to be autism and aspergers, high functioning autism and low functioning autism, etc. Each classification had its problems but the general idea wasn't wrong: there has to be a term for people who need support and can't function without it, to differentiate between them and the high flyers (or even just "getting by OK") and to my mind "high needs autism" is the right term. The definitions of autism as I understand them are.. interesting. The reason a highly successful person can be diagnosed is because the diagnostic criteria - usually the triad of impairments - specify a person must have difficulties but tend not to describe a way of categorising the level of those difficulties. By way of example, I might have difficulty knowing what to say to a person (social interaction) in an unfamiliar setting (social imagination) which could manifest itself as me awkwardly interacting in a way that isn't called for, but which is recognised as social awkwardness. Some autistic people may freeze - sometimes in terror - and simply stop responding while they try to work out what to do. Imagine how it feels to be lost for words, and then some. To my knowledge, both examples above fulfil the criteria because they're both social difficulties. I'd recommend reading more about the diagnostic criteria and interrogating the range of problems people can face. To me, the dividing line is independence. I'd suggest starting there in your thinking, but not forgetting that autism can also be a hidden disability insofar AW support needs might be invisible to the people around.

raffraffraff 3y ago
I absolutely agree with you about where the dividing line is. Your experience reminds me of an article my wife read out to me a while back. It was written by a guy who has an autism diagnosis. He brother is also autistic, but low functioning. And likewise he said that it's hurting his brother that there are thousands of people out there claiming to be autistic, whose symptoms are little more debilitating than social anxiety. It causes people to disregard the condition and underestimate the huge effort that families have to put in to care for an autistic child. Similarly, charities that accept donations for autism... Who gets that? The author of the piece that my wife read, said that he needs nothing, but his brother needs constant care.

ahazred8ta 3y ago

Well, they've recently identified several brain structural abnormalities which have slightly different symptom patterns, all of which fit within a generalized 'autism' diagnosis. They're hoping this will lead to individualized treatment. https://news.weill.cornell.edu/news/2023/04/four-different-autism-subtypes-identified-in-brain-study https://news.weill.cornell.edu/news/2023/04/four-different-a...