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ASPartOfMe
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29 Mar 2022, 8:32 am

Why do we need to retire ‘high functioning autism from our vocabulary’ by Sofia Garcia-Bulle

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The term "high-functioning autism" was coined in the 80s to describe people who have autism but not an intellectual disability. The concept was first used by a highly specialized group within the medical community; it was specific to neurodivergent people. However, it is not a diagnosis, and as it sneaked into the language of everyday use, it began to be mentioned as a kind of medical opinion. The risk is that this generates misinformation regarding the neurodivergent community, which has been protesting its use for years, not only because it is an offensive term but also inaccurate.

Researchers at the Telethon Kids Institute and the University of Western Australia conducted a study about autism. Of 2,225 children, those who would be "highly functional autistic" (and not classified with intellectual disability) had functional skills below the expected average for their IQ. In contrast, those with "low functionality" had skills more in line with what would be expected using the same coefficient. "We demonstrated that those who didn’t have an intellectual disability – what people would have classically called ‘high functioning autism’ – in fact have marked challenges with their everyday skills compared to what we would typically expect from their IQ," commented Dr. Gail Alvares, leader of the team that conducted the study.

Many children and young people with autism who have an age-appropriate IQ have trouble carrying out everyday activities. Such as getting to their schools, using public transportation, communicating at the same level as their peers, and other essential actions, Alvares explained. In this context, using the category of "high functionality" casually to refer to people with autism creates a false image that those in this category do not have problems, do not need help, and make their difficulties invisible.

The more severe problem is that policymakers have casually used this classification to decide who should receive services, support, or funding, rather than conducting an in-depth assessment case-by-case, as Andrew Whitehouse, a professor, and researcher at Telethon Kids, explained to Spectrum News. However, perhaps the most onerous burden for people designated as "high-function" is the mental and emotional tax of socializing and navigating the world as if they were not neurodivergent people.

By referring to them in this way, we are drawing an arbitrary line separating people from different spectra of neurodivergence to the detriment of people with other degrees of intellectual disability that we classify as "low functionality." We are also making invisible the cognitive and cerebral differences that autistic people with sufficient intellectual abilities have as they try to integrate into the neurotypical world. In their attempt, we do not see or recognize the struggle of people whose brains work differently. We assume that imitating neurotypical behaviors to ensure social survival is the same as learning, adapting, and executing them without more effort than we apply.


Translation by Daniel Wetta

Disclaimer: This is an Op-ed article. The viewpoints expressed in this article are the author’s own and do not necessarily reflect the opinions, viewpoints, and official policies of Tecnológico de Monterrey.


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29 Mar 2022, 3:03 pm

The problem is not functionning labels or hf autism, its that the 1940`s label and diagnosis of autism itself has become outdated & useless.

Functioning ability is so broad that its impossible to identify needs. They have to attach multi letter soup add on`s like adhd or ID that is a gift to the psychology industry but makes it harder to everyone else.

We need more investment to break up the spectrum into groups


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30 Mar 2022, 5:26 am

"all of the above" Teaching and training of diagnosing persons and those doing diagnosing today simply can not keep up with all the new information and new understanding of autism which science is gaining these days. No idea how to hurry the process along. I can see we are far ahead of when I began looking for info on adult autism just 6 years ago. So much new information available in studies, books, since then.

I appreciate the article.
Being labeled "high functioning" seems to be the same denial of my struggles that I had all my life when people would say I should know better, was not working hard enough, did not have moral strength or character, I should just shape up and snap out of it. High functioning label means I can be ignored and dismissed. It is just another dismissive categorization of the same type as I lived through all my life (weird, odd, dorky, geeky, annoying, nerdy, one simply replaces another) Your experience may be totally different, I expect it is for each of us.


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auntblabby
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30 Mar 2022, 5:38 am

i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.



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30 Mar 2022, 7:38 am

^^ Your experience is very similar to mine. The damage done is incalculable.


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ASPartOfMe
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30 Mar 2022, 9:39 am

auntblabby wrote:
i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.

That is how it should be, oh well.


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30 Mar 2022, 11:15 am

Darn. I want to disagree even though I have high regard for all of you.

I did not know the label "High Functioning" was an official label.

I never understood it to be targeted on IQ or intellectual disability. I thought it meant good at muddling through life without much external help. I'd believe there was a loose statistical correlation but not an absolute correlation. (And for "external help" I'd include friends and family tolerating your quirks.)

Perhaps some believe it means no difficulties or issues but that was not my understanding. Rather, just fewer serious ones.

And I did not equate it to effortless social intelligence. I would think a someone could be High Functioning and still be an absolute socially clueless jerk.

And I suspect the innate ability that separates the billionaire high functioning folk from us is the ability to make money. I imagine having a few billion dollars makes life much easier to muddle through (and persuades others to be much more tolerant of your faults).


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1986
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30 Mar 2022, 11:42 pm

auntblabby wrote:
i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.

Attaining professional positions and raising families means little if you aren't happy. I wish you would think better of yourself, Blabby, because you've made a great contribution to WP (just look at that post count, considering you put in thought in your posts and aren't just hanging around the game forums all the time). Your lack of masking, as you put it, actually gives earnestness to the words you speak.



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31 Mar 2022, 1:32 am

1986 wrote:
auntblabby wrote:
i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.

Attaining professional positions and raising families means little if you aren't happy. I wish you would think better of yourself, Blabby, because you've made a great contribution to WP (just look at that post count, considering you put in thought in your posts and aren't just hanging around the game forums all the time). Your lack of masking, as you put it, actually gives earnestness to the words you speak.

thank you 1986, for caring :heart: btw, 1986 is prolly the best year of my life. it all went downhill from that point. so, do you think i am high-functioning too?



1986
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31 Mar 2022, 2:31 am

auntblabby wrote:
1986 wrote:
auntblabby wrote:
i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.

Attaining professional positions and raising families means little if you aren't happy. I wish you would think better of yourself, Blabby, because you've made a great contribution to WP (just look at that post count, considering you put in thought in your posts and aren't just hanging around the game forums all the time). Your lack of masking, as you put it, actually gives earnestness to the words you speak.

thank you 1986, for caring :heart: btw, 1986 is prolly the best year of my life. it all went downhill from that point. so, do you think i am high-functioning too?

More than many of us in many areas. You have plenty of people here who appreciates your posts and the way you often strike up good coversations with others. Many aspies merely state their own opinion and ask very direct questions related to the subject, but with you it feels like an organic conversation.

Glad 1986 was a good year for you. Disregarding Reagan-era consumerism and capitalist conformity, it was a great time to see Halley's Comet. :)



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31 Mar 2022, 2:53 am

1986 wrote:
auntblabby wrote:
1986 wrote:
auntblabby wrote:
i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.

Attaining professional positions and raising families means little if you aren't happy. I wish you would think better of yourself, Blabby, because you've made a great contribution to WP (just look at that post count, considering you put in thought in your posts and aren't just hanging around the game forums all the time). Your lack of masking, as you put it, actually gives earnestness to the words you speak.

thank you 1986, for caring :heart: btw, 1986 is prolly the best year of my life. it all went downhill from that point. so, do you think i am high-functioning too?

More than many of us in many areas. You have plenty of people here who appreciates your posts and the way you often strike up good conversations with others. Many aspies merely state their own opinion and ask very direct questions related to the subject, but with you it feels like an organic conversation. Glad 1986 was a good year for you. Disregarding Reagan-era consumerism and capitalist conformity, it was a great time to see Halley's Comet. :)

glad i'm not the only one who didn't like the era, but i was at my physical peak in that year, in terms of health and vigor. unfortunately i was also in the army at that time. :|



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31 Mar 2022, 11:09 am

Double Retired wrote:
...I have high regard for all of you.
auntblabby, that definitely includes you.

And, oh, I've been looking through some old files and it looks to me like 1989–1992 were happy years for me. And I think part of the late 1980s. And the late 2010s. And last August I felt good.

Sigh. Advice I often offer on WP is to keep going. I never said it would make you happy.


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31 Mar 2022, 5:41 pm

Double Retired wrote:
Double Retired wrote:
...I have high regard for all of you.
auntblabby, that definitely includes you. And, oh, I've been looking through some old files and it looks to me like 1989–1992 were happy years for me. And I think part of the late 1980s. And the late 2010s. And last August I felt good. Sigh. Advice I often offer on WP is to keep going. I never said it would make you happy.

thank you DR :heart: i don't have much of a choice at present but to keep going. i'm close to the finish line though, i only have to keep it up a little bit longer. one of the benefits of bein' an ol' fart.



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02 Apr 2022, 5:32 am

carlos55 wrote:
The problem is not functionning labels or hf autism, its that the 1940`s label and diagnosis of autism itself has become outdated & useless.

Functioning ability is so broad that its impossible to identify needs. They have to attach multi letter soup add on`s like adhd or ID that is a gift to the psychology industry but makes it harder to everyone else.

We need more investment to break up the spectrum into groups

Yes! If it's anything [worth keeping as a category], it's multifaceted, and different people don't have the same level of difficulty in the same area. Someone who struggles with hyperfixation on routines is not going to be helped by a something intended to help those who have difficulty with social communication. And it's not even clear that ADHD/ADD is a separate thing from Autism, if Autism is even a thing (brain scans haven't detected any difference between the two according to a study I read a couple of days ago, but they are both different from typical brains). Lumping hurts people and stops them from getting help with their specific difficulties; a multi axis model will be far more useful.



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04 Apr 2022, 1:15 pm

Double Retired wrote:
I did not know the label "High Functioning" was an official label.

I never understood it to be targeted on IQ or intellectual disability. I thought it meant good at muddling through life without much external help.

Yep the "high functioning" label -- which never was an official term, but was commonly used by psychotherapists, special educators, etc. -- originally referred just to IQ. See the Wikipedia article on high-functioning autism.

Later, some people interpreted "high-functioning" as meaning "able to live independently" or "good at masking." But it didn't originally mean those things.


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20 Jun 2022, 1:10 pm

auntblabby wrote:
i would refer only to those with effortless social intelligence as "high functioning." being able to mask/emulate without being wiped out in short order qualifies IMHO. people like steve jobs and bill gates and elon musk are probably good examples of those types, in addition to the people here on WP who managed to attain professional positions and raise families and have circles of friends.


I am ASD-1 and "high functioning" even compared to many people who would be considered "high functioning" - I have the appearance of effortless social intelligence and *make it look easy to other people* - because I'm middle aged and have studied psychology, cultures, human behavior, social psychology, etc, for a majority of my life. A lot of my "function" is smoke and mirrors. When some neurodiversity-critical severely disabled autistics comment about ND activists speaking on their behalf, who are borderline normal in function, who are capable of masking, or who don't even need to mask that much (acknowledging that masking isn't the only high-effort social strategy), they are talking about autistics like myself. That said, I have some interaction every single day that reminds me that I'm autistic, and am well aware of specific glass ceilings I've hit in my life that I can't get around because I am actually experiencing a neurological impairment in my social interactions that I am having to compensate for. No amount of learning can change the fact that I can't process two people talking to me at the same time, for example, and that's only one example. But I am still able to use the learning I have done over the years because I am not as impaired as some other autistics innately are.

I have worked with severely disabled people in a previous career, lived with someone who was probably ASD-2 and identified as probable classic autism, and do not feel that my day to day life looks like the day to day life of someone with higher support needs autism, even people within the category of ASD-1 who have more support needs with day to day stuff such as transportation/shopping/etc. and or are much more socially impaired on a day-to-day casual contact type of level. I feel like that is fair to say. In fact I'll go so far as to say that I as an individual have more in common with people I know who have severe ADHD (some of whom may actually be undiagnosed and on the spectrum) or other neurodivergences than with people who are much more functionally impaired than I am as autists, and we have lost a lot of the discourse around this.

I am far more disabled by executive function, processing, and sensory issues on a day-to-day basis than I am by just social stuff (I haven't even really experienced that much bullying as an adult, and I'm well liked, but pulling it off depends upon some exhausting curation and management of my life that has been perfected over decades). However, I will never be as successful as the allistics I know who are doing my same work - nor as successful as the autistics who have had more of the invisible supports I've lacked. I've never been able to get past an AA degree in school because of the lack of supports, for example.

The problem with using Jobs, Gates, and Musk as any kind of metric is that your best chance of becoming like either of those three is to be born with the right parents, and thus having access to invisible supports. Most of the neurodiversity advocates out there with Ph.D.'s had access to far more invisible supports than I or many ASD-1 people have.

And past a certain point of success (built upon by access to supports and various structures to begin with), people were and are managing these men's lives for them.


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Last edited by orbweaver on 20 Jun 2022, 1:42 pm, edited 1 time in total.