CDC Study of Profound Autism
ASPartOfMe
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10 May 2023, 9:45 am
Quote:
The percentage of 8-year-old children with profound autism among those with autism was 26.7%. Compared with children with non–profound autism, children with profound autism were more likely to be female, from racial and ethnic minority groups, of low socioeconomic status, born preterm or with low birth weight; have self-injurious behaviors; have seizure disorders; and have lower adaptive scores. In 2016, the prevalence of profound autism was 4.6 per 1000 8-year-olds. The prevalence ratio (PR) of profound autism was higher among non-Hispanic Asian/Native Hawaiian/Other Pacific Islander (PR = 1.55; 95 CI, 1.38-1.73), non-Hispanic Black (PR = 1.76; 95% CI, 1.67-1.86), and Hispanic (PR = 1.50; 95% CI, 0.88-1.26) children than among non-Hispanic White children.
As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.
As the population of children with autism continues to change, describing and quantifying the population with profound autism is important for planning. Policies and programs could consider the needs of people with profound autism across the life span to ensure their needs are met.
Most of the study is behind a paywall.
I wish we had data beyond 2016.
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10 May 2023, 10:35 am
An article on the study in spectrumnews
https://www.spectrumnews.org/news/u-s-s ... nd-autism/
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10 May 2023, 12:25 pm
I posted this NCSA article before it seems while the term "Profound Autism" is a welcome addition (i suppose it replaces severe autism?) it still assumes the other 75 % is ok.
Its debatable if profound autism should be extended to at least 45-50% of autistics those with an IQ of below 85, serious impairment and no ability to live independently
https://www.ncsautism.org/blog//the-pro ... und-autism
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ASPartOfMe
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10 May 2023, 3:06 pm
The problem goes back to old colloquial "high and low functioning" labels. There was never a moderate functioning label. Even though the DSM 5 tried to address this issue with three "support needs" levels the functioning label duality evidently is too baked in.
"Support needs" is a politically correct functioning label. The less you can function in society the more support you are going to need. The correct criticisms of functioning labels such as the ability to function are highly affected by societal values and vary greatly day by day and skill by skill applies to support needs.
The old Aspergers diagnosis with all its faults was never meant to be only about "mild" but that is what it too often ended up being. When Aspergers became a colloquial term any constraints on defining the label disappeared. Now it means Aspie savant or genius. So it seems most people who are not profound get a Level One diagnosis which is still conflated with Aspergers and all the stereotypes that go along with it.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
11 May 2023, 3:27 pm
ASPartOfMe wrote:
The problem goes back to old colloquial "high and low functioning" labels. There was never a moderate functioning label. Even though the DSM 5 tried to address this issue with three "support needs" levels the functioning label duality evidently is too baked in.
"Support needs" is a politically correct functioning label. The less you can function in society the more support you are going to need. The correct criticisms of functioning labels such as the ability to function are highly affected by societal values and vary greatly day by day and skill by skill applies to support needs.
The old Aspergers diagnosis with all its faults was never meant to be only about "mild" but that is what it too often ended up being. When Aspergers became a colloquial term any constraints on defining the label disappeared. Now it means Aspie savant or genius. So it seems most people who are not profound get a Level One diagnosis which is still conflated with Aspergers and all the stereotypes that go along with it.
"Support needs" is a politically correct functioning label. The less you can function in society the more support you are going to need. The correct criticisms of functioning labels such as the ability to function are highly affected by societal values and vary greatly day by day and skill by skill applies to support needs.
The old Aspergers diagnosis with all its faults was never meant to be only about "mild" but that is what it too often ended up being. When Aspergers became a colloquial term any constraints on defining the label disappeared. Now it means Aspie savant or genius. So it seems most people who are not profound get a Level One diagnosis which is still conflated with Aspergers and all the stereotypes that go along with it.
ASD 1,2 & 3 never worked as no one outside the autism world understood what it meant.
That's why profound autism was invented, a replacement to severe autism that used to be classic autism that used to be originally the R word.
The public just need a word to easily understand someone`s needs like an ER nurse, fireman running into a burning building, maybe just some ordinary joe six pack who is trying to work out if someone acting odd is a threat or not.
A quick word not a list of subjective medical or internet ND whitewashing psychobabble.
This problem gave rise to profound autism or just word shuffling.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
09 Jul 2023, 8:09 pm
carlos55 wrote:
Its debatable if profound autism should be extended to at least 45-50% of autistics those with an IQ of below 85, serious impairment and no ability to live independently
That would kind of dilute the direness of the "profound" term. It's a slippery slope to creating a bunch of terms to pigeonhole kids who's potential may not yet be known and they will not be given the same opportunities they have now.
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09 Jul 2023, 10:21 pm
carlos55 wrote:
ASPartOfMe wrote:
The problem goes back to old colloquial "high and low functioning" labels. There was never a moderate functioning label. Even though the DSM 5 tried to address this issue with three "support needs" levels the functioning label duality evidently is too baked in.
"Support needs" is a politically correct functioning label. The less you can function in society the more support you are going to need. The correct criticisms of functioning labels such as the ability to function are highly affected by societal values and vary greatly day by day and skill by skill applies to support needs.
The old Aspergers diagnosis with all its faults was never meant to be only about "mild" but that is what it too often ended up being. When Aspergers became a colloquial term any constraints on defining the label disappeared. Now it means Aspie savant or genius. So it seems most people who are not profound get a Level One diagnosis which is still conflated with Aspergers and all the stereotypes that go along with it.
"Support needs" is a politically correct functioning label. The less you can function in society the more support you are going to need. The correct criticisms of functioning labels such as the ability to function are highly affected by societal values and vary greatly day by day and skill by skill applies to support needs.
The old Aspergers diagnosis with all its faults was never meant to be only about "mild" but that is what it too often ended up being. When Aspergers became a colloquial term any constraints on defining the label disappeared. Now it means Aspie savant or genius. So it seems most people who are not profound get a Level One diagnosis which is still conflated with Aspergers and all the stereotypes that go along with it.
ASD 1,2 & 3 never worked as no one outside the autism world understood what it meant.
That's why profound autism was invented, a replacement to severe autism that used to be classic autism that used to be originally the R word.
The public just need a word to easily understand someone`s needs like an ER nurse, fireman running into a burning building, maybe just some ordinary joe six pack who is trying to work out if someone acting odd is a threat or not.
A quick word not a list of subjective medical or internet ND whitewashing psychobabble.
This problem gave rise to profound autism or just word shuffling.
Which is a large part of why the previous terms were scrapped. The condition has a lot of different ways that it can present, and even for the same person it can look very different at different points in their life for one reason or another. You're just not going to get one term that communicates clearly what the problem is to the public any better than the current situation does.
As long as too people can have a profound level of autism and have significantly differing needs, the label is going to be a little benefit beyond what the current ASD Level 3 indicates.
I do agree that they went a bit too far in terms of clumping everybody together, but it's not like it's an easy fix or like there was an easy place to draw the line when they were redefining things.
Ultimately, it's going to be our responsibility to explain what the terms mean in ways that the public understands. And yes, I do realize that it's not fair and that it's particularly hard for our community, but ultimately, there really aren't any good alternatives.
CarlM wrote:
carlos55 wrote:
Its debatable if profound autism should be extended to at least 45-50% of autistics those with an IQ of below 85, serious impairment and no ability to live independently
That would kind of dilute the direness of the "profound" term. It's a slippery slope to creating a bunch of terms to pigeonhole kids who's potential may not yet be known and they will not be given the same opportunities they have now.
Absolutely, we don't even have intelligence tests that accurately capture the breadth of what people commonly do. Trying to find one that tells you whether or not somebody is profound is going to be even harder when you have people who might be generally OK except for being nonverbal or whatever the criteria are.
10 Jul 2023, 2:17 am
wouldn't profound autism have commorbids, genetic commorbids, probably near on the dna- string i guess,
fwiw https://molecularautism.biomedcentral.c ... 20-00333-6
10 Jul 2023, 7:08 am
CarlM wrote:
carlos55 wrote:
Its debatable if profound autism should be extended to at least 45-50% of autistics those with an IQ of below 85, serious impairment and no ability to live independently
That would kind of dilute the direness of the "profound" term. It's a slippery slope to creating a bunch of terms to pigeonhole kids who's potential may not yet be known and they will not be given the same opportunities they have now.
As mentioned in the linked NCSA article I provided although PA is a welcome development it assumes everyone else is ok, which they are not.
There is a large borderline group that fall outside of profound autism but have a sub normal level of intelligence and understanding of their environment.
This is the 25% of 8 year olds that feature in the CDC stats alongside the 33% with ID.
It stays like this until 18 then this 25% splits in two, normal / ID.
So people think only 33% of autistic people have ID when in reality it’s closer to 45%.
Then you have those with IQ 70-85 on top of this that are still negatively effected by intellectual impairment.
The article gives a good picture of the 30 year old who thinks Santa’s coming down the chimney for him etc..
These people should really be included in profound autism or at least have their own sub category.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
10 Jul 2023, 7:24 am
carlos55 wrote:
ASD 1,2 & 3 never worked as no one outside the autism world understood what it meant.
The DSM 5 system includes not just the 3 levels but also:
Quote:
Specify if:
With or without accompanying intellectual impairment / With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
[...]
Associated with another neurodevelopmental, mental, or behavioral disorder.
[...]
With catatonia (refer to the criteria for catatonia associated with another mental disorder)
With or without accompanying intellectual impairment / With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
[...]
Associated with another neurodevelopmental, mental, or behavioral disorder.
[...]
With catatonia (refer to the criteria for catatonia associated with another mental disorder)
That's MUCH more specific -- and much clearer -- than "profound autism."
carlos55 wrote:
That's why profound autism was invented,
No, that's pretty obviously NOT the reason.
The most likely reason for the "profound autism" label was an effort by NCSA to capture more of the autism research budget for research into the more severely disabling conditions.
Due to the relative novelty of the very idea of "autism" (relative to the idea of intellectual impairment or the idea of an inability to speak) -- and due to the ensuing panic, about 20 to 30 years ago, over a perceived autism "epidemic" -- a lot more money got poured into autism research than into research on intellectual impairment or language impairment.
If things were the other way around -- if more money were being poured into research on intellectual impairment than into research on autism -- then the National Council on Severe Autism would probably have called itself the "National Council on Severe Intellectual Impairment," with "severe intellectual impairment" being defined as intellectual impairment accompanied by autism or an inability to speak.
As I see it, the "profound autism" label is an attempt to attract more funding via linguistic sleight-of-hand rather than just via the simple (and valid) social-justice argument that people with greater needs should get more attention.
carlos55 wrote:
The public just need a word to easily understand someone`s needs like an ER nurse, fireman running into a burning building, maybe just some ordinary joe six pack who is trying to work out if someone acting odd is a threat or not.
The label "profound autism" doesn't actually help anyone understand anyone's needs better.
Quote:
A quick word not a list of subjective medical or internet ND whitewashing psychobabble.
Do you really mean to dismiss the DSM 5 specifiers as mere "ND whitewashing psychobabble"???
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10 Jul 2023, 10:20 am
Mona Pereth wrote:
carlos55 wrote:
ASD 1,2 & 3 never worked as no one outside the autism world understood what it meant.
The DSM 5 system includes not just the 3 levels but also:
Quote:
Specify if:
With or without accompanying intellectual impairment / With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
[...]
Associated with another neurodevelopmental, mental, or behavioral disorder.
[...]
With catatonia (refer to the criteria for catatonia associated with another mental disorder)
With or without accompanying intellectual impairment / With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
[...]
Associated with another neurodevelopmental, mental, or behavioral disorder.
[...]
With catatonia (refer to the criteria for catatonia associated with another mental disorder)
That's MUCH more specific -- and much clearer -- than "profound autism."
carlos55 wrote:
That's why profound autism was invented,
No, that's pretty obviously NOT the reason.
The most likely reason for the "profound autism" label was an effort by NCSA to capture more of the autism research budget for research into the more severely disabling conditions.
Due to the relative novelty of the very idea of "autism" (relative to the idea of intellectual impairment or the idea of an inability to speak) -- and due to the ensuing panic, about 20 to 30 years ago, over a perceived autism "epidemic" -- a lot more money got poured into autism research than into research on intellectual impairment or language impairment.
If things were the other way around -- if more money were being poured into research on intellectual impairment than into research on autism -- then the National Council on Severe Autism would probably have called itself the "National Council on Severe Intellectual Impairment," with "severe intellectual impairment" being defined as intellectual impairment accompanied by autism or an inability to speak.
As I see it, the "profound autism" label is an attempt to attract more funding via linguistic sleight-of-hand rather than just via the simple (and valid) social-justice argument that people with greater needs should get more attention.
carlos55 wrote:
The public just need a word to easily understand someone`s needs like an ER nurse, fireman running into a burning building, maybe just some ordinary joe six pack who is trying to work out if someone acting odd is a threat or not.
The label "profound autism" doesn't actually help anyone understand anyone's needs better.
Quote:
A quick word not a list of subjective medical or internet ND whitewashing psychobabble.
Do you really mean to dismiss the DSM 5 specifiers as mere "ND whitewashing psychobabble"???
I was referring to the general public or near general public like a firefighter for example
carlos55 wrote:
ASD 1,2 & 3 never worked as no one outside the autism world understood what it meant.
That's why profound autism was invented, a replacement to severe autism that used to be classic autism that used to be originally the R word.
The public just need a word to easily understand someone`s needs like an ER nurse, fireman running into a burning building, maybe just some ordinary joe six pack who is trying to work out if someone acting odd is a threat or not.
That's why profound autism was invented, a replacement to severe autism that used to be classic autism that used to be originally the R word.
The public just need a word to easily understand someone`s needs like an ER nurse, fireman running into a burning building, maybe just some ordinary joe six pack who is trying to work out if someone acting odd is a threat or not.
Sure a psychiatrist will know what level 3 autism means, but a firefighter will need to know if someone to be rescued is likely to not be able to follow basic instructions. It goes down from there airline staff, police etc..
They could train everyone on the 3 levels but most unaffected especially the non emergency workers will probably forget the differences and it seems a bit silly someone coming back "did you say he had level 2 or 3?"
Anyway as explained the term profound autism is a welcome development but it assumes a black & white everyone else is ok which is not true for reasons given in the NCSA article.
It seems the term profound autism like ID is too narrow & strict and excludes too many autistic people
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
10 Jul 2023, 10:39 am
carlos55 wrote:
Sure a psychiatrist will know what level 3 autism means, but a firefighter will need to know if someone to be rescued is likely to not be able to follow basic instructions. It goes down from there airline staff, police etc..
I was talking about the specifiers, not the levels. The DSM 5 categorization involves more than just the three levels.
Apparently you replied without first bothering to read what I wrote.
"Autistic with intellectual impairment" or "autistic and nonverbal" is much clearer and more specific than "profound autism."
carlos55 wrote:
Anyway as explained the term profound autism is a welcome development but it assumes a black & white everyone else is ok which is not true for reasons given in the NCSA article.
That's why the DSM 5 has three levels rather than just two, and why it also has specifiers in addition to just the levels.
The "profound autism" label does not really clarify anything. The purposes it serves are primarily political, as far as I can tell.
One of my issues with the "profound autism" label is that, just like "low-functioning autism," it is based on characteristics other than autism per se, i.e. low IQ and/or lack of language. IMO it's better -- and clearer -- just to say "autism with intellectual impairment" or "autism with language impairment."
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- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
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10 Jul 2023, 3:04 pm
Mona Pereth wrote:
carlos55 wrote:
Sure a psychiatrist will know what level 3 autism means, but a firefighter will need to know if someone to be rescued is likely to not be able to follow basic instructions. It goes down from there airline staff, police etc..
I was talking about the specifiers, not the levels. The DSM 5 categorization involves more than just the three levels.
Apparently you replied without first bothering to read what I wrote.
"Autistic with intellectual impairment" or "autistic and nonverbal" is much clearer and more specific than "profound autism."
carlos55 wrote:
Anyway as explained the term profound autism is a welcome development but it assumes a black & white everyone else is ok which is not true for reasons given in the NCSA article.
That's why the DSM 5 has three levels rather than just two, and why it also has specifiers in addition to just the levels.
The "profound autism" label does not really clarify anything. The purposes it serves are primarily political, as far as I can tell.
One of my issues with the "profound autism" label is that, just like "low-functioning autism," it is based on characteristics other than autism per se, i.e. low IQ and/or lack of language. IMO it's better -- and clearer -- just to say "autism with intellectual impairment" or "autism with language impairment."
I`m aware of the alphabet soup diagnosis i.e., ASD, ADHD, SPD, ID, psychosis, epilepsy etc…
This probably suits clinicians as it allows possible treatment paths for the separate issues like ADHD drugs for example.
But it still left a problem with regards to the public and general perception of “autism” becoming too trivialised and a large group close to 45% of adults with autism & ID being forgotten about as a result.
It was probably viewed 45% is not just a coincidence to add on as an afterthought rather a solid proportion of the autism community that needed to be properly fairly recognised.
I suppose to some ND advocates Profound Autism is like dropping a turd in a beautiful punch bowl they have been carefully building over the last several years, desperately trying to suppress to the public the savage reality of severe neurological disorder under the autism umbrella as they attempt to change the language around autism via semantics.
It does represent a significant victory for the NSCA and a voice for those with profound autism that are human beings who need to be fairly shown to the world with resources dedicated to them.
I suspect as the article implied their next target will be recognition of those autistics who are just outside of ID but have a disabling low IQ in the 70-85 range.
Of course this is all temporary the NHS in the UK is starting to give WGS to kids with an autism diagnosis i believe in around 25-30% a genetic reason is found like 15q11.2 deletion etc..
This is just a start as the relationship with different genes gets better understood that will rise, in 20 -30 years who knows what will be left as "autism"?
Seems like efforts to categorise autism as a single condition & "identity" is DOA
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
10 Jul 2023, 4:43 pm
carlos55 wrote:
Mona Pereth wrote:
carlos55 wrote:
Sure a psychiatrist will know what level 3 autism means, but a firefighter will need to know if someone to be rescued is likely to not be able to follow basic instructions. It goes down from there airline staff, police etc..
I was talking about the specifiers, not the levels. The DSM 5 categorization involves more than just the three levels.
Apparently you replied without first bothering to read what I wrote.
"Autistic with intellectual impairment" or "autistic and nonverbal" is much clearer and more specific than "profound autism."
carlos55 wrote:
Anyway as explained the term profound autism is a welcome development but it assumes a black & white everyone else is ok which is not true for reasons given in the NCSA article.
That's why the DSM 5 has three levels rather than just two, and why it also has specifiers in addition to just the levels.
The "profound autism" label does not really clarify anything. The purposes it serves are primarily political, as far as I can tell.
One of my issues with the "profound autism" label is that, just like "low-functioning autism," it is based on characteristics other than autism per se, i.e. low IQ and/or lack of language. IMO it's better -- and clearer -- just to say "autism with intellectual impairment" or "autism with language impairment."
I`m aware of the alphabet soup diagnosis i.e., ASD, ADHD, SPD, ID, psychosis, epilepsy etc…
This probably suits clinicians as it allows possible treatment paths for the separate issues like ADHD drugs for example.
But it still left a problem with regards to the public and general perception of “autism” becoming too trivialised and a large group close to 45% of adults with autism & ID being forgotten about as a result.
It was probably viewed 45% is not just a coincidence to add on as an afterthought rather a solid proportion of the autism community that needed to be properly fairly recognised.
I suppose to some ND advocates Profound Autism is like dropping a turd in a beautiful punch bowl they have been carefully building over the last several years, desperately trying to suppress to the public the savage reality of severe neurological disorder under the autism umbrella as they attempt to change the language around autism via semantics.
It does represent a significant victory for the NSCA and a voice for those with profound autism that are human beings who need to be fairly shown to the world with resources dedicated to them.
I suspect as the article implied their next target will be recognition of those autistics who are just outside of ID but have a disabling low IQ in the 70-85 range.
Of course this is all temporary the NHS in the UK is starting to give WGS to kids with an autism diagnosis i believe in around 25-30% a genetic reason is found like 15q11.2 deletion etc..
This is just a start as the relationship with different genes gets better understood that will rise, in 20 -30 years who knows what will be left as "autism"?
Seems like efforts to categorise autism as a single condition & "identity" is DOA
I fail to see how adding a new term to explain solves any of that. I do get why it's a problem, unlike us bisexuals that get left out of pretty much everything, we're talking about the portion of the autistic community with the least amount of resources for engaging with the public to push for accommodations and help.
But, even if a term is accepted to reflect that group, it's still going to require a large amount of time and effort to explain how it's different from non-profound autism and also carries with it the side effect of unnecessarily stigmatizing autism for those that don't have that level of support needs. The current criteria do clearly indicate something that most people are going to get. Level 3 support needs are greater than Level 1 support needs, it doesn't require much explanation and communicates the same basic thing.There is likely always going to need to be work done to ensure that people understand that Level 1 is still a pretty freaking big deal, but people generally do have more of a capacity to compare things that are more similar than those that don't have a clear relationship with each other.
Honestly, it just seems better for everybody to stop encouraging autism to be stigmatized while pushing for better support and care for the aspects of the condition which are causing problems. Stigmatizing the entire condition doesn't really seem to do anything other than ensure that portions of the community never get diagnosed and as such aren't there to help or receive the help that we need.
11 Jul 2023, 1:13 am
MatchboxVagabond wrote:
carlos55 wrote:
Mona Pereth wrote:
carlos55 wrote:
Sure a psychiatrist will know what level 3 autism means, but a firefighter will need to know if someone to be rescued is likely to not be able to follow basic instructions. It goes down from there airline staff, police etc..
I was talking about the specifiers, not the levels. The DSM 5 categorization involves more than just the three levels.
Apparently you replied without first bothering to read what I wrote.
"Autistic with intellectual impairment" or "autistic and nonverbal" is much clearer and more specific than "profound autism."
carlos55 wrote:
Anyway as explained the term profound autism is a welcome development but it assumes a black & white everyone else is ok which is not true for reasons given in the NCSA article.
That's why the DSM 5 has three levels rather than just two, and why it also has specifiers in addition to just the levels.
The "profound autism" label does not really clarify anything. The purposes it serves are primarily political, as far as I can tell.
One of my issues with the "profound autism" label is that, just like "low-functioning autism," it is based on characteristics other than autism per se, i.e. low IQ and/or lack of language. IMO it's better -- and clearer -- just to say "autism with intellectual impairment" or "autism with language impairment."
I`m aware of the alphabet soup diagnosis i.e., ASD, ADHD, SPD, ID, psychosis, epilepsy etc…
This probably suits clinicians as it allows possible treatment paths for the separate issues like ADHD drugs for example.
But it still left a problem with regards to the public and general perception of “autism” becoming too trivialised and a large group close to 45% of adults with autism & ID being forgotten about as a result.
It was probably viewed 45% is not just a coincidence to add on as an afterthought rather a solid proportion of the autism community that needed to be properly fairly recognised.
I suppose to some ND advocates Profound Autism is like dropping a turd in a beautiful punch bowl they have been carefully building over the last several years, desperately trying to suppress to the public the savage reality of severe neurological disorder under the autism umbrella as they attempt to change the language around autism via semantics.
It does represent a significant victory for the NSCA and a voice for those with profound autism that are human beings who need to be fairly shown to the world with resources dedicated to them.
I suspect as the article implied their next target will be recognition of those autistics who are just outside of ID but have a disabling low IQ in the 70-85 range.
Of course this is all temporary the NHS in the UK is starting to give WGS to kids with an autism diagnosis i believe in around 25-30% a genetic reason is found like 15q11.2 deletion etc..
This is just a start as the relationship with different genes gets better understood that will rise, in 20 -30 years who knows what will be left as "autism"?
Seems like efforts to categorise autism as a single condition & "identity" is DOA
I fail to see how adding a new term to explain solves any of that. I do get why it's a problem, unlike us bisexuals that get left out of pretty much everything, we're talking about the portion of the autistic community with the least amount of resources for engaging with the public to push for accommodations and help.
But, even if a term is accepted to reflect that group, it's still going to require a large amount of time and effort to explain how it's different from non-profound autism and also carries with it the side effect of unnecessarily stigmatizing autism for those that don't have that level of support needs. The current criteria do clearly indicate something that most people are going to get. Level 3 support needs are greater than Level 1 support needs, it doesn't require much explanation and communicates the same basic thing.There is likely always going to need to be work done to ensure that people understand that Level 1 is still a pretty freaking big deal, but people generally do have more of a capacity to compare things that are more similar than those that don't have a clear relationship with each other.
Honestly, it just seems better for everybody to stop encouraging autism to be stigmatized while pushing for better support and care for the aspects of the condition which are causing problems. Stigmatizing the entire condition doesn't really seem to do anything other than ensure that portions of the community never get diagnosed and as such aren't there to help or receive the help that we need.
Stigmatising / trivializing and forgetting is one supposed to be worse than the other?
As they say about snowflakes generation “everyone is offended” .
If that’s the case priority lies with those with the greatest need which is those with profound autism.
Let’s not pretend we have not been here before I was diagnosed Asperger’s but now I’m autistic, a condition very much associated with ID in the past.
I just had to deal with that.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
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