Lancet Report: Momentum builds toward breaking up of ASD

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carlos55
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08 Dec 2021, 1:34 pm

Quote:
Dear NCSA community,

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD."

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives.

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more



Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.
By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum
Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in


https://www.ncsautism.org/blog//lancet- ... m-spectrum


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autisticelders
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09 Dec 2021, 4:55 am

interesting. thank you


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10 Dec 2021, 11:36 am

carlos55 wrote:
Quote:
In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD."
Making a separate diagnosis available for profound Autism seems to make sense...but I haven't heard of anything answering the question: Do Profound Autism and Mild Autism have different underlying causes, or are they just different levels of symptom severity for symptoms attributable to the same underlying cause?


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10 Dec 2021, 1:19 pm

The problems I see:
1. Between the "young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" and the "college professor with social anxieties and some OCD", there is the whole, continuous, multi-dimentional spectrum of ASD conditions, so any cut-off will be arbitrary.
2. People on the spectrum very often have spiky ability profiles, which makes "severity" of their autism dependent on area/task to do. I can't learn to safely drive but I do quantum physics. Am I disabled or not?
3. Severity of autistic symptoms depends also on overall physical and mental health of a person and other factors not related to the autism itself. I've observed it in my daughter going from "just shy and a bit awkward" to fully disabled and mute and back to "just shy and awkward" depending on who was her main teacher at school (and, of course, how the teacher behaved towards her).

So, while in some contexts it makes sense to distinguish between various "autism severity levels", it does not invalidate the concept of autism spectrum.


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10 Dec 2021, 4:36 pm

Autism has many causes, it should be remembered.

To me, it's more of a "syndrome" than a single condition. A Spectrum. This is autism from 1994 and afterwards.

There are very definite symptoms within "classic autism." Then there are those that are more vague. Probably, the more "higher functioning" a person is, the more vague and subtle the symptoms will be. Though this is by no means absolute, by many means. There can be a "high-functioning" person who has very blatant "classic autism" symptoms.

Within what is called "low-functioning" autism, the symptom base is very definite and not subtle at all.

It was much easier to diagnose autism in the 1960s because it really was only "one condition" then---the one Kanner proposed in 1942. People who were diagnosed with Aspergers in the 1990s and 2000s would probably have been diagnosed with "minimal brain dysfunction," or would have just been considered "nerdy" during the 1980s or before.



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10 Dec 2021, 6:19 pm

Thanks for posting that. I agree with all the responses. People with "profound autism" are marginalised in funding and care services because of vague, umbrella terminology. It's become politically incorrect to identify their consistent challenges, their limited adaptive function, or their significant, ongoing needs.

The same could be said of so-called "high functioning" people, who are often ignored or expected to cope with their autism unsupported. Advocacy groups have pushed so hard to identify people's individual strengths, and the existence of a politically-friendly "spectrum", that many autistic people are denied Disability benefits, accommodations, or services of any type. There's a misconception that if an autistic person can walk and talk or count to ten, they don't need help. We all know that's not true, so in essence the term "high functioning" does a disservice to our very distinct yet diverse population.

Then there's the problem of consequence. "High functioning" people experience burnout and lose function because of pushing themselves too hard. Where does that place a person? Trauma, depression, and other mental health co-morbids are often a consequence of life on the spectrum, rather than a separate or random occurrence. Burnout and co-morbids need to be assessed concurrently in terms of a person's overall "level", which complicates matters even more because they're cumulative over time.

It's frustrating when people can't speak of their needs, or get the support that they deserve. It's also difficult to classify any autistic person on a static scale, because our stories are all so unique.

My main question about the article is that it equates "profound autism" with a low IQ. IQ isn't in the diagnostic criteria for autism, so I don't understand why a person considered lower functioning will need to have lower intelligence. There are many ways or reasons why a person could be "lower functioning" in terms of the diagnostic criteria for autism, and none of these are related to traditional IQ tests.



carlos55
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12 Dec 2021, 4:20 pm

Since autism itself at the moment is just diagnosed on tickboxes, maybe profound autsim will just be diagnosed in the same way.

Probably not involving intermittent skills either as in magz example of her daughter.


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12 Dec 2021, 4:42 pm

What do you mean about tick boxes? I don't know anyone who was diagnosed in such a simple way.

Yes our skills and challenges can fluctuate, but were you joking about tick boxes?



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13 Dec 2021, 12:13 am

This largely conforms to my own experiences, I'm not sure where you'd draw the cutoff, for me it's always been a bit of a "know it when I see it" kind of thing.


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carlos55
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13 Dec 2021, 7:44 am

IsabellaLinton wrote:
What do you mean about tick boxes? I don't know anyone who was diagnosed in such a simple way.

Yes our skills and challenges can fluctuate, but were you joking about tick boxes?


There’s no biological test for autism or the subtypes so it can only be diagnosed from questioning and observing and a judgment is then made by the assessor.

Maybe poor executive function and minimum independent living skills should be included as both have serious consequences.


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13 Dec 2021, 8:03 am

I think there needs to be some distinction. The obvious one is IQ. Executive functions aside, IQ is the ultimate deciding factor.

Where this imaginary line is placed is anyone's guess.

I think autism support is far to heavily aimed at children too and perhaps autism can even be divided by age group.



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13 Dec 2021, 8:54 am

carlos55 wrote:
IsabellaLinton wrote:
What do you mean about tick boxes? I don't know anyone who was diagnosed in such a simple way.

Yes our skills and challenges can fluctuate, but were you joking about tick boxes?


There’s no biological test for autism or the subtypes so it can only be diagnosed from questioning and observing and a judgment is then made by the assessor.

Maybe
poor executive function and minimum independent living skills should be included as both have serious consequences.


Thanks for explaining. I'm very literal so I thought you meant actual tick boxes:

✅ ✅ ❌ ✅ ✅ ❌ 8)



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14 Dec 2021, 4:37 am

carlos55 wrote:
Quote:
Dear NCSA community,

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD."

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives.

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more



Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.
By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum
Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in


https://www.ncsautism.org/blog//lancet- ... m-spectrum


Back to the future?

Nothing changes for profoundly autistic people whether they get their own label or not,



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15 Dec 2021, 10:30 am

carlos55 wrote:
Quote:
Dear NCSA community,

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD."

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives.

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more



Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.
By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum
Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in


https://www.ncsautism.org/blog//lancet- ... m-spectrum


Podcast featuring Alison Singer


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17 Dec 2021, 9:37 am

Push To Add ‘Profound Autism’ Label Gains Steam

Quote:
Support for recognizing profound autism as a separate psychiatric diagnosis has gained momentum recently with several high-profile endorsements.

Since a 2013 change to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, or DSM, autism spectrum disorder has been an umbrella diagnosis encompassing everyone from mildly affected individuals who used to be diagnosed with Asperger’s syndrome to those who are nonverbal and require 24-hour care.

That’s far too broad, said Amy Lutz, vice president of the National Council on Severe Autism.

It’s not useful to think of everybody having the same disorder, including a range of presentations from people who are law school graduates to those who are still in diapers and nonverbal,” Lutz said. “It’s not helpful for research or therapeutics. It’s become a meaningless category.”

The umbrella ASD diagnosis has marginalized a growing population of individuals whose neurobehavioral pathologies are among the most alarming and disabling in the entire field of psychiatry,” reads the statement.

Whether you had an IQ of 50 or 150 you were diagnosed the same,” Singer said. “This turned out to be a huge problem. A group of very high-functioning people were called upon to represent autism at policy tables and in the media.”

The term “profound autism” was coined by Dr. Catherine Lord, a professor at UCLA’s Center for Autism Research & Treatment and the co-chair of The Lancet commission.

The term may apply to 18% to 48% of people with autism, according to the researchers.

There is opposition to splitting up the spectrum from neurodiversity advocates who eschew labels like high- or low-functioning and among some parents whose children might be considered to have “profound autism,” said Julia Bascom, executive director of the Autistic Self Advocacy Network.

“The reality is that autistic people, just like people with Down syndrome or cerebral palsy, have a wide range of abilities and support needs, for lots of different reasons,” Bascom said. “Autistic people need and deserve better services, especially those of us with the highest needs — but the ‘profound autism’ label doesn’t help.”

Shannon Rosa, who writes the blog “The Thinking Person’s Guide to Autism,” said using a label like profound autism segregates people from the needs and services of the wider autism community.

“What parents of high-support autistic kids like me need instead is more awareness of and connection with the other communities who understand our kids’ high-support traits, like the disability and non-speaking communities — in addition to the wider autistic community,” Rosa wrote in a recent blog post.

While calls for a revision to the autism diagnosis are mounting, the American Psychiatric Association has not signaled that a change is imminent.

Anyone proposing a change to the DSM must start by submitting a proposal to the association.


A lot to comment on here.

Lets start with terminology. The article credits Cathrine Lord for coining the term “profound autism”. I can not dispute that but I have seen Steve Silberman use the term for a number of years so I find it odd that some now consider it offensive. I have been using “severe autism” ever since it was the term of KingdomOfRats a former member used to describe herself. To me “profound autism” is roughly saying “severe autism” in that it is saying the persons innate autistic traits are very strong.

Functioning labels were used professionally to differentiate between intelligence. Most people use functioning labels to mean literally the ability to function in society. Neurodiversity movement supporters object to this saying a lot of Autistics inability to function in society is the result of not Autism caused impairments but societal value judgements. This is the belief from which the entire ND movement flows. An apparent consensus seems to be building in the ND movement to replace functioning labels with support needs labels like ironically the DSM5 uses. This befuddles me. To me functioning labels and support needs labels are equivalent. How much support you are going to need is directly related to how well you can function in society. While there is something to be said for support needs labels being pro active and functioning labels being passive advocating for support needs labels is advocating for the very thing the ND movement was created to oppose. Labeling by support needs continues the problem of an autistic person being clueless in some areas and very skilled in other. All it does is replace the very broad autism label with a still way too broad support needs label.

It is progress to see advocates for “profound” autistics recognizing the type of autistics that can write here have legitimate needs. Much better then the denial of our autism common in advocates for “real autism” back when I started here on WP. That said of have major problems with what they believe.

They claim to be marginalized. Yet ABA is set up while not completely for them, certainly not for mild autistics. Everyday there are newspaper stories about autistic wondering and found dead and so on. Maybe the fact it is not all about them anymore makes it seem like they are marginalized.

I have a problem with their favoring segregation. With people that are truly a danger to others segregation is necessary. But in order to improve literal functioning in society people have to understand each other and that is much better done by interaction. In other words segregation should only be the last option not the goal. I think the DSM IV making Aspergers a separate diagnosis caused some of the issues these parent advocates are complaining about. When aspergers was a separate diagnosis it became convenient to think of profound autistics as them and thus ignore

I am just really tired of the seemingly unshakable belief that ND advocates are all super high functioning aspies unable to to help profound autistics. Again, there are ND advocates who are anything but elitist shiny aspies. It would be delusional to say there are no significant differences in the experiences and abilities of these two groups of autistics but by what logic are allistics in general more qualified then people who have lived with the condition for decades?

I know I have been repeating this for over 8 years now. If you live in mid town Manhattan your experience is radically different then a person living in a rural area of upstate New York. Yet very few would seriously say the two of you are not Americans. Same idea is accepted for for medical, psychological and so many other categories. But the concept of subcategories for always had fierce fierce resistance.


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“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


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17 Dec 2021, 3:16 pm

It’s rather obvious that the ND paradigm and talking about differences and strengths is unsuitable for those with severe or profound autism, who have the living skills of a 3-year-old & need round the clock care for life.

No doubt many in the ND movement will put identity politics before people`s needs as always and deny there is an issue.

I don’t believe calling it profund autism will change much anymore than the word severe autism since it still has the word & association with autism, but that’s the main issue with autism at the moment because everything is under one label all conditions are considered the same, not only when they are clearly not, but there is not even scientific evidence that the different presentations have anything in common with each other.

Elon Musk has autism, (assuming he was ever diagnosed or publicity stunt) who says he does? the main sitting opposite him across a desk who has no biological evidence to work with, the same person may have diagnosed another person with profound autism, again with nothing to work with but questioning & observation.

The ND movement can take advantage of this vacuum in scientific understanding for now, but they are on borrowed time. Sooner or later the whole spectrum will be sub divided anyway and with it the name single word autism.


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