Lancet Report: Momentum builds toward breaking up of ASD

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CarlM
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22 Dec 2021, 10:58 pm

I agree the Mona that it would be preferable to keep the word autism out of the name for the new condition. I realize that is a self-serving opinion but there are reasons for professionals to agree with that goal. I think there is still a need destigmatize the word "autism". Is it really clear whether ID or ASD is the dominant disability for this condition? How about "profound developmental disability" and they could reuse the PDD acronym w/o the NOS, if that's not too confusing.


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23 Dec 2021, 3:17 am

Part of me agrees but the other part thinks it’s a pointless exercise.

They would be better identifying the causes of the multiple autism(s) including profound autism


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28 Dec 2021, 6:16 am

Looks like its officially happened and will apply to 18% to 48% of those with ASD.

https://www.autismparentingmagazine.com ... tism-term/


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01 Jan 2022, 12:59 pm

Double Retired wrote:
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?


It is the same underlying condition, involving the Microglia cells (immune cells) in the brain, that started expressing a disordered pattern of synaptic pruning during the early childhood brain development phase, of new, learning based neurons & synapses (starts around the age of 2).

Those with mild autism, suffered a mild atypical immune provocation & Microglia injury. Those who are severe, suffered a more profound Microglia injury.



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01 Jan 2022, 2:02 pm

magz wrote:
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.


Good reply. I'm one of those for whom adaptive functioning <IQ applies hence I can get on things like the World genius directory but need quite a lot of help with day to day practical tasks.


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08 Jan 2022, 7:51 am

Functioning Labels Harm Autistic People - ASAN

Quote:
On December 6th, a group of autism researchers commissioned by The Lancet released a report on the future of autism services and research. This report primarily deals with the need for better services and research for autistic people, including the need for individualized services, and research that prioritizes quality of life. Unfortunately, media coverage of this report has focused on a brief recommendation to create an administrative classification called “profound autism.” Articles about the report have focused on this recommendation, and some have used it to argue that “profound autism” should be a separate autism diagnosis, in spite of the fact that the report specifically says it is not being proposed as a diagnostic term. Autistic people are failed by this coverage. It is a shame that a report focused on the need to improve and research services and support for autistic people is being overshadowed by a sidebar recommendation to apply functioning labels to autistic people with the highest support needs — a recommendation which will fail to improve services or quality of life for these individuals.

Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism, as have parents of autistic people with the most significant support needs. “Profound autism” is just an attempt to rebrand the same harmful notion. 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. The Lancet Commission conflates needing 24/7 support with having a measured IQ of 50 or below or being nonspeaking, but this is a harmful oversimplification — for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently. We also know that IQ tests are notoriously unreliable for autistic people, particularly nonspeaking autistics. Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label, when co-occurring disabilities are common in autistic people and already accounted for by the DSM.

Autistic people need and deserve better services, especially those of us with the highest needs — but the “profound autism” label doesn’t help. “Profound autism” doesn’t give us any actionable information about why a person needs support or what support they need. It doesn’t tell us if a person has speech apraxia or complex medical needs, or if the person needs access to AAC or specific mental health supports. It also doesn’t reflect what we know about people with significant developmental disabilities generally, which is that high expectations and inclusive services benefit everyone and we can’t predict what someone can achieve with the right support.

Instead of rehashing old, harmful arguments about functioning labels, we should focus on improving the services available to all autistic people — which is what the majority of the Lancet Commission report is actually about. Many autistic people with a wide range of needs go without any services, and even those of us with services too often lack the kind of robust, high-quality, individualized, and respectful supports that would truly enable us to live our best lives. To begin to address this, researchers and policymakers must focus on services that can improve quality of life. When a report directing researchers to do just that is derailed to promote functioning labels, this harms autistic people. We need media outlets — and autism organizations — to focus on recommendations that will truly make a difference in the lives of autistic people. Our community’s unmet needs are critical, and must not be pushed under the rug in favor of resurrecting harmful functioning labels once more. ASAN will continue to advocate for research and services that meet the needs, and promote the dignity, of all autistic people.

As I said earlier in this thread “support needs” is a functioning label. How you do or do not function in society determines support needs.


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08 Jan 2022, 9:24 am

ASPartOfMe wrote:
Functioning Labels Harm Autistic People - ASAN
Quote:
On December 6th, a group of autism researchers commissioned by The Lancet released a report on the future of autism services and research. This report primarily deals with the need for better services and research for autistic people, including the need for individualized services, and research that prioritizes quality of life. Unfortunately, media coverage of this report has focused on a brief recommendation to create an administrative classification called “profound autism.” Articles about the report have focused on this recommendation, and some have used it to argue that “profound autism” should be a separate autism diagnosis, in spite of the fact that the report specifically says it is not being proposed as a diagnostic term. Autistic people are failed by this coverage. It is a shame that a report focused on the need to improve and research services and support for autistic people is being overshadowed by a sidebar recommendation to apply functioning labels to autistic people with the highest support needs — a recommendation which will fail to improve services or quality of life for these individuals.

Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism, as have parents of autistic people with the most significant support needs. “Profound autism” is just an attempt to rebrand the same harmful notion. 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. The Lancet Commission conflates needing 24/7 support with having a measured IQ of 50 or below or being nonspeaking, but this is a harmful oversimplification — for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently. We also know that IQ tests are notoriously unreliable for autistic people, particularly nonspeaking autistics. Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label, when co-occurring disabilities are common in autistic people and already accounted for by the DSM.

Autistic people need and deserve better services, especially those of us with the highest needs — but the “profound autism” label doesn’t help. “Profound autism” doesn’t give us any actionable information about why a person needs support or what support they need. It doesn’t tell us if a person has speech apraxia or complex medical needs, or if the person needs access to AAC or specific mental health supports. It also doesn’t reflect what we know about people with significant developmental disabilities generally, which is that high expectations and inclusive services benefit everyone and we can’t predict what someone can achieve with the right support.

Instead of rehashing old, harmful arguments about functioning labels, we should focus on improving the services available to all autistic people — which is what the majority of the Lancet Commission report is actually about. Many autistic people with a wide range of needs go without any services, and even those of us with services too often lack the kind of robust, high-quality, individualized, and respectful supports that would truly enable us to live our best lives. To begin to address this, researchers and policymakers must focus on services that can improve quality of life. When a report directing researchers to do just that is derailed to promote functioning labels, this harms autistic people. We need media outlets — and autism organizations — to focus on recommendations that will truly make a difference in the lives of autistic people. Our community’s unmet needs are critical, and must not be pushed under the rug in favor of resurrecting harmful functioning labels once more. ASAN will continue to advocate for research and services that meet the needs, and promote the dignity, of all autistic people.

As I said earlier in this thread “support needs” is a functioning label. How you do or do not function in society determines support needs.


Its little surprise that the half a dozen or so people that sit in that small room that make up ASAN pretending they speak for 75 million people, would demand political correctness before meeting people`s needs and ensuring their safety.

What they neglect to mention is that there already is and have always been official & unofficial functioning labels for autism otherwise known as ASD 1,2 & 3 that 99% of NTs and society outside the autism world have no idea about.

In a perfect world many would simply say educate people! presuming those unaffected by autism both care, are listening and will remember that ASD 3 is severe autism under another name which is unlikely.

Everyone knew what the old label retarded meant but it was deemed offensive & replaced with the current one.

It obviously never occurred to ASAN, the cop on the way to a domestic disturbance not having time to google ASD 3 on his phone, not knowing if he may have to draw his gun, being told the person doing the disturbance has profound autism is extremely useful to know & could avoid a tragedy.

Or semi-skilled health workers, emergency services crew, welfare assessors, detectives, teachers and plenty more to describe.

Maybe even the air steward being told a child who has autism has to still wear a mask because autism isn’t a disability as she probably heard on tv somewhere.

What they also fail to acknowledge is while there is a lot of fluctuation within the middle bands of ASD on a daily basis, there are large areas of static functioning levels.

Anthony Hopkins will not have profound autism on his worst day & the ID autistic teen with the intellect of a 3-year-old is not going to reach aspie level either.


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08 Jan 2022, 6:52 pm

carlos55 wrote:
Everyone knew what the old label retarded meant but it was deemed offensive & replaced with the current one.


When you boil down all the debates that have raged over labelling it always boils down to this. Most higher functioning aspies do feel some level of stigma over NT public perception that the label ASD/autism is associated with ID which NTs still refer to as retardation.

In popular culture intellectual disability (even visibly mild) is associated with being slow, spastic or weird. You could have an IQ of 160 but if you behave weirdly in public, are unable to hold a coherent conversation or have weird obsessions then at school you immediately get hit with the r-word.

I know this is an unpopular view but from what I see many high functioning folk start from a position of not wanting to be labelled and then scan looking for evidence to break up ASD to justify their initial position.



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31 Jan 2022, 9:03 am

Dividing Up the Autism Spectrum Will Not End the Way You Think - The Nation

Julia Bascom serves as executive director at the Autistic Self Advocacy Network, the largest national disability rights organization run by and for autistic people themselves.

David M. Perry is a journalist and historian. He is a coauthor of The Bright Ages: A New History of Medieval Europe.

Quote:
In 1998, a British doctor named Andrew Wakefield published a paper in the medical journal The Lancet claiming to have found a link between autism and the vaccine for mumps, measles, and rubella.

During the coronavirus pandemic, we’re seeing the consequences of that initial anti-vaccination scheme as it’s moved beyond autism discussions and become part of the scaremongering around the Covid-19 vaccine. And, inside the autism community, autistic people are being pitted against one another, in a scenario in which the only outcome is that everyone loses.

The antivax movement emerged out of the idea that autism was an enemy to be defeated, which lies in direct contrast to the neurodiversity movement and its focus on accepting and supporting autistic people (as well as those with many other disabilities). Today, that means that too many parents are getting the message that fighting for their kids, especially if their kids have high support needs, is in conflict with the neurodiversity movement led by many adult autistic self-advocates.

To make the situation worse, in December 2021, The Lancet—yes, the same journal that published Wakefield—set off a media firestorm when its report on the state of autism services included a proposal for a new label of “profound autism.” It created the label with the intention of establishing a category of autistic people that can be segregated, at least by definition, from the rest. But this is a false dichotomy.

The effort to divide up the autism spectrum has emerged mostly because some parents whose kids need a lot of support want to differentiate their child from autistic adults, whom they see as “not like their child.” Such parents believe that they are fighting a different battle than that of autistic adults who can, at times, pass as neurotypical; they see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts. First, the fight for rights and supports for all autistic peoples is one fight—and indeed, a difficult one, given the many barriers to inclusion layered throughout our ableist society. Second, autistic people who seem very different from the outside may be more similar than we realize.

If there were really a need to divide the autism community between the parents and their kids who need high support and the autistic adults out in the professional world, we guess we’d be on opposite sides. Julia is the executive director of the Autistic Self Advocacy Network, while David is the father of an autistic boy with Down syndrome. Nico, David’s son, and Julia, have the kind of superficial differences that lead some to see a conflict where none exists—Julia gives speeches, and Nico is learning to use an Assistive Communication Device. Nico has an intellectual disability, and Julia does not. But in fact, in our years working on disability rights, we have seen that every policy goal and cultural shift around autism acceptance has been a rising tide that lifts all boats.

When self-advocates call for inclusive schools, ending restraint and seclusion, and alternatives to guardianship, they are taking on issues that are critical for people with the most significant disabilities in the United States.

Despite the work of so many self-advocates, parent advocates, and allies, the dominant message in our society is still that autism is horrible, and that autism, intellectual disability, and other significant cognitive disabilities mean that you aren’t really a person. People don’t have to believe these things consciously; they can just absorb the messages they hear all around them without realizing it.

When parents have absorbed these messages, maybe without even realizing it, that moment of diagnosis can lead to a very dark place.

If you believe that autistic people can’t be happy, or live good lives, or grow up and learn new skills—as the dominant message tells you—then when you, the parent of a child with high support needs, see an autistic person who can do things as an adult that an autistic child can’t, or who seems happy, or who has a good life, it can seem easy to think that they must not have “real” autism. After all, in this false message, “real” autism means suffering in our society.

Believing that autism equals suffering, so people who aren’t visibly suffering don’t have real autism, is a classic logical fallacy that becomes difficult to refute.

When parents like David say that their nonspeaking autistic child with an intellectual disability brings them joy, other parents have responded that we just don’t understand “real” autism. Meanwhile, the structural failures—the kinds of false scarcity that David wrote about in The Nation last year and that the Autistic Self Advocacy Network lobbies to change—that actually undermine quality of life for so many autistic people and our families, such as inadequate communication supports and lack of community services, go unaddressed.

Julia, for example, gave a speech in 2018 at the UN. People have used this to argue that she must have a fundamentally different, and much “milder” kind of autism. What those people don’t know is that on the day of the speech, the organizers had to rearrange the entire event schedule because she had a meltdown and couldn’t speak. They don’t know about the emergency measures she took to be able to read her speech after that; the support person behind her; how sick it made her after; or even that she wore glasses to read her speech because she damaged her eyes banging her head as a teenager.

David’s son, Nico, has the opposite problem. Because he doesn’t speak with his mouth, because he’s unlikely to be the executive director of a major nonprofit, because his needs are so overt, people easily overlook his layers of understanding and competence.

And sometimes, sadly, even adult self-advocates are too prone to distancing themselves from people with intellectual disabilities.

So what do we do now? First, we have to tell different stories, and lift up examples of people with significant disabilities who are happy, included, well-supported, and doing lots of different things.

We can presume competence—an important concept in the intellectual disability world that starts all interactions with the presumption that the other party is able to do things, able to communicate, able to be included. We can provide supports and accommodations for self-advocates, and we can normalize the idea of needing help—a lot of help—without sacrificing agency. We can be unwavering about the fact that autistic people and people with intellectual disabilities are full persons.

Ultimately, dividing up the autistic spectrum doesn’t help autistic people–but it does distract us from the urgent work necessary to ensure that all autistic people, especially autistic people with the highest needs, have everything they need to thrive. The people who benefit from this division seek to maintain the status quo, where resources are scarce and where higher needs justify segregation and coercive control. We think autistic people–[/i]all[/i] autistic people–deserve better than that.

bolding=mine

This is a much needed article as it debunks the widely held notion that the ND movement is made up of a bunch of “high functioning” autistic people who are clueless about the needs of most autistics especially “profound” autistics. The background information about Julia Bascom’s difficulties should but won’t disabuse people of that notion. The mentioning of all autistics and the lobbying against discriminatory working arrangements which does not usually effect the type of autistics the ND movement is said to be made up of is further evidence.

The line I bolded is a long overdue acknowledgement of ableism in the autistic community.

“Profound Autism”, “Low Functioning Autism”, “Severe Autism”, “High Support Needs” are imperfect descriptive terms. What makes them divisive is solely a matter of peoples interpretations.

I do take issue with the description of differences among autistics as “superficial”. We recognize diversity as differences to be celebrated not dismissed as superficial. Acknowledging this should not imply certain people are not real autistics or undeserving.

I think this is an overcorrection of years of parent centered organizations saying autistics who can write in a place like this as not having “real autism” or not autistic at all. While that sort of sentiment exists among parents that is not mainstream sentiment today.

The National Council of Severe Autism has emerged as a major advocacy organization for the type of autistics we are discussing. There is a lot with the ND advocacy for to oppose. Amy Lutz the organizations secretary said “ We fully support self-advocates pursuing the support that they need, but this is completely separate.” Indeed the notion of “completely separate” is what the article was written specifically to oppose. But that self advocates need support and although some will disagree an implied acknowledgement that the self advocates are indeed autistic.


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Last edited by ASPartOfMe on 31 Jan 2022, 11:13 am, edited 8 times in total.

carlos55
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31 Jan 2022, 10:33 am

It’s hardly surprising that ASAN are now in decline.

Trying to claim that millionaire actor Anthony Hopkins, or married celebs who live independently have the same needs as someone who is severely disabled and needs 24 /7 care.

Really taken leave of all logic in favor of political correctness.

No doubt ASAN influence will further end up marginalized and shrink further into obscurity.


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31 Jan 2022, 4:20 pm

ASPartOfMe wrote:
This is a much needed article as it debunks the widely held notion that the ND movement is made up of a bunch of “high functioning” autistic people who are clueless about the needs of most autistics especially “profound” autistics. .


You do realise AS, that most of the autism-led groups are populated precisely by "high functioning autistic people who are literally clueless about the needs of most autistics" right.

I am not saying they don't care, but I don't think the ND movement are ever thinking of lower functioning folk when they talk about "autism rights", Plenty on this forum have already said this on WP so it's no secret.

I know this is an unpopular sentiment (and nobody on this forum wants to hear it) but for the 40% of autistic people who are unable to communicate for themselves to the outside world their only advocates are their parents.

The ND movement are currently (and will remain) a high functioning aspie organisation who'se members puport to speak for all autistics but they don't do they.

I have said this now for a decade that maybe the best thing is for Aspergers to remain usable label so that those who self-identify as apsies can lobby for their own and not try and speak for everyone on the spectrum.

40% is a lot of autistic people



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31 Jan 2022, 9:03 pm

cyberdad wrote:
ASPartOfMe wrote:
This is a much needed article as it debunks the widely held notion that the ND movement is made up of a bunch of “high functioning” autistic people who are clueless about the needs of most autistics especially “profound” autistics. .


You do realise AS, that most of the autism-led groups are populated precisely by "high functioning autistic people who are literally clueless about the needs of most autistics" right.

I am not saying they don't care, but I don't think the ND movement are ever thinking of lower functioning folk when they talk about "autism rights", Plenty on this forum have already said this on WP so it's no secret.

I know this is an unpopular sentiment (and nobody on this forum wants to hear it) but for the 40% of autistic people who are unable to communicate for themselves to the outside world their only advocates are their parents.

The ND movement are currently (and will remain) a high functioning aspie organisation who'se members puport to speak for all autistics but they don't do they.

I have said this now for a decade that maybe the best thing is for Aspergers to remain usable label so that those who self-identify as apsies can lobby for their own and not try and speak for everyone on the spectrum.

40% is a lot of autistic people

I can not vouch for the ND movement in Australia but most of the leading ND advocates I have read about do not fit the Shiny Apsie stereotype. Many of the such as John Robson who presents as High Functioning as adults did not present that way as children. I believe there are many children who present as profoundly autistic present that way for two reasons. Lack of societal support, and we have not figured out a way to communicate with them.

Of course, at the present time, many autistics can not communicate their needs, and there is a large gap between them and autistics who can post in a place like this. But to me it strains credulity that the "high functioning" are less qualified than neurotypicals to offer advice about treating autistics and thus should be ignored.


Aspergers is a label that has been useful but it is a very imperfect one. Besides the Nazi complicity of the man the label is named for, it describes too broad of a group of autistics. Eventually, it needs to be replaced by labels that more accurately describe autistics, which include but go beyond intellectual ability and functioning in society. When we have that knowledge advocacy organizations for specific "Autisms" would make sense. For now, general autistic advocacy organization(s) are needed.


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31 Jan 2022, 9:37 pm

ASPartOfMe wrote:
But to me it strains credulity that the "high functioning" are less qualified than neurotypicals to offer advice about treating autistics and thus should be ignored.


I think what would work is high functioning folk offering to help NT parents with their children. Parents like myself are always willing to listen.

Aspies do have something to contribute toward helping parents of the 40% of autistic of people who rely on their parents. But ultimately the "shiny" aspies don't get speak for our children,



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01 Feb 2022, 1:45 pm

cyberdad wrote:
ASPartOfMe wrote:
But to me it strains credulity that the "high functioning" are less qualified than neurotypicals to offer advice about treating autistics and thus should be ignored.


I think what would work is high functioning folk offering to help NT parents with their children. Parents like myself are always willing to listen.

Aspies do have something to contribute toward helping parents of the 40% of autistic of people who rely on their parents. But ultimately the "shiny" aspies don't get speak for our children,


While not a completely false dichotomy the Autism Warrior moms vs advocates is considerably less than it was when I became aware in 2013. Antidotally I see a lot less of Autism Justice Warriors harassing and calling Autism parents Nazis. And many parents have moved beyond the "you do not have any right". In fact, there is a problem of overcorrection with parents saying thier kids are "special" or have "superpowers".


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01 Feb 2022, 4:08 pm

ASPartOfMe wrote:
cyberdad wrote:
ASPartOfMe wrote:
But to me it strains credulity that the "high functioning" are less qualified than neurotypicals to offer advice about treating autistics and thus should be ignored.


I think what would work is high functioning folk offering to help NT parents with their children. Parents like myself are always willing to listen.

Aspies do have something to contribute toward helping parents of the 40% of autistic of people who rely on their parents. But ultimately the "shiny" aspies don't get speak for our children,


While not a completely false dichotomy the Autism Warrior moms vs advocates is considerably less than it was when I became aware in 2013. Antidotally I see a lot less of Autism Justice Warriors harassing and calling Autism parents Nazis. And many parents have moved beyond the "you do not have any right". In fact, there is a problem of overcorrection with parents saying thier kids are "special" or have "superpowers".


When I joined WP I got a little riled up by the "shinys" attacking NT parents until I realised most don't have "perfect" lives themselves and are dealing (often quietly and discreetly) with their own issues.

It's not my place to judge here. I'm still a guest.

There does, however, continue to be those who choose to speak for "all" autistic people or they are better placed than NTs to understand our children. I actually seriously doubt it. My observation (and again this is an unpopular sentiment) is that aspies who blend in with NTs are effectively no different to the NTs they mix with when it comes to their attitude toward lower functioning folk, Even middle of the road (moderately functioning auties) probably don't have insight because every kid is different. Sure there are sensitivity issues but even these differ from person to person.

That's why it doesn't bother me whether ASD is split up again or stays the same. It makes no difference in terms of High functioning - Lower functioning relations because whatever happens the relationship will continue to be largely non-existent.



Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 5,640
Location: New York City (Queens)

02 Feb 2022, 9:49 am

carlos55 wrote:
Trying to claim that millionaire actor Anthony Hopkins, or married celebs who live independently have the same needs as someone who is severely disabled and needs 24 /7 care.

No one has claimed this. You are misrepresenting ASAN's position.

More about this later.


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Last edited by Mona Pereth on 02 Feb 2022, 10:19 am, edited 1 time in total.