Column in The Hill against the use of "disorder"

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28 Jan 2020, 6:34 am

Let's change the words we use around autism
Sam Farmer wears many hats, among them father, husband, musician, computer consultant and autism spectrum community contributor. Diagnosed later in life with Asperger’s syndrome, he writes blogs, records coaching videos and presents at conferences and support groups for the Asperger/Autism Network.

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New year. New decade. A good time for society to embrace a new attitude about autism, which considers the wellbeing of those who walk in these shoes. There are many on the autism spectrum who live with a compromised sense of self, who deserve to be able to work on building self-esteem without society thinking less of them by viewing autism as a disorder. Autism is also frequently described as a “disability” or as a “condition,” both of which carry the same potential consequences. Public discourse about autism that refers to it in these ways can stymie progress on self-esteem building by adversely affecting one’s emotional state. I should know. I have been living on the autism spectrum for 50 plus years and had to fight for the better portion of these years to learn how to love myself.

There is arguably no greater gift than the gift of self-love, without which true happiness essentially becomes an impossibility. Too many on the autism spectrum have been denied this gift, largely because they have a difficult time coming to terms with their view of themselves as being different from everybody else, because of the unique challenges they confront on a regular basis and because of their knowledge, or belief, that they are perceived as having a disorder or as being disabled. However, it is never too late for these folks to work towards self-love and attain it. I am proof that it can happen, and I am not the only one. Every well-intentioned person is entitled to a strong sense of self. Let nothing undermine one’s pursuit of it. When more of us feel good about ourselves, the world becomes a better place.

In some respects, autism’s listing in the DSM as a disorder is a good thing. As a result, clinicians are able to provide beneficial treatments and interventions, at least some of which would not be available had it not been for ASD’s inclusion in the DSM. Furthermore, the DSM leads to ASD diagnoses, which entitle some on the spectrum to much-needed government assistance. For those whose autism profile carries challenges that are particularly acute, “disorder” may be relevant. However, for others on the spectrum working on building self-esteem and who feel that their autism profile is core to who they are, the autism/disorder association is toxic.

Perhaps I am trying to have my cake and eat it, too, when I say that the work that clinicians perform in helping folks on the autism spectrum achieve better outcomes is essential, and yet, autism should not be thought of as a disorder. But then again, maybe not. Is there a rule that states that you need to have a disorder in order to be helped? All of us could use some guidance of one form or another, simply because we are human, and to be human is to be imperfect. This is nothing to be ashamed of. Clinical intervention has been instrumental for me and others, not for trying to fix or cure a disorder but for helping us find greater happiness and live more meaningful, connected lives as autistic people in a predominantly nonautistic society. I don’t feel as though I have a disorder. Instead, I have accepted the fact that I am different. The help I have received eventually led me to an understanding that acceptance of the diagnosis as well as self-acceptance are required if I was to build self-esteem to the point of finally learning how to love myself.

Wondrous stories can be told of autistic folks. In Greta Thunberg, we have Time’s 2019 Person of the Year. 10 percent of the workforce at Walgreens now consists of “disabled” employees, many of whom are autistic, and perfectly capable, if not exceptional, at their jobs. The dance group Autism With Attitude (AWA) recently appeared on the British television series The Greatest Dancer to a standing ovation. Temple Grandin, Ph.D., author, professor and revered autism community advocate, is a National Women’s Hall of Fame inductee. Organizations like the College Internship Program (CIP) are successfully preparing their autistic students and others with learning differences to thrive in positions of leadership, at the workplace and in college. And the list could go on and on. In my view, these people are not disabled. Rather, they are exceptional and use their spectrum profiles as assets. Hopefully all of them feel this way about themselves. They certainly deserve to.

Words matter. As such, let’s adopt a view of autism that does not compromise the sense of self of those who have been diagnosed and who are emotionally vulnerable. Furthermore, let’s communicate about autism in terms that are all-inclusive and which respect the diversity that is intrinsic to the autism spectrum. For example, “autism spectrum” without “disorder” immediately following. “Profile” instead of “disorder,” “condition” or “disability.” “Challenge” instead of “symptom” or “deficit.” The proposed wording is valid regardless of where on the spectrum an autistic individual may fall. Words matter. Choose them wisely.

"For those whose autism profile carries challenges that are particularly acute, “disorder” may be relevant. However, for others on the spectrum working on building self-esteem and who feel that their autism profile is core to who they are, the autism/disorder association is toxic."

"The proposed wording is valid regardless of where on the spectrum an autistic individual may fall. "
In the first paragraph I quoted the author validates critics who say this whole ND thing is just a bunch of Aspies separating themselves from those other autistics. The second paragraph I quoted does not undo this.

The rest of is post is me trying to think through things
On to the major point of the article while words matter I wonder if the use of politically correct wording is less effective for autistics due to logical mindset, black and white thinking and pattern thinking. For autistics who believe they are broken people who are doomed to never have a job, a girlfriend or sexual experiences based on their lives so far politically correct language has seemed to further the feelings they are an isolated losers.

The article is about as much about society as individuals. There is a strong argument to be made that if society sees autistics in a more positive light they will treat autistics better, the pattern thinkers will see a less negative pattern and draw a better conclusions about themselves. It is also true that others judge you by how you present, and if autistics present as hating themselves NT's are going to treat them like garbage. So in addition to changing language the ND movement needs to find a way to use Autistic traits to boost autistic self esteem. If this does not happen the ND movement can't go any farther because they will have permanently isolated a large part of the population they want to help and a opportunities lost.

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vermontsavant
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28 Jan 2020, 7:52 am

Oh god,the endless squabling over technical language,like what does it matter.Thats why I prefere "idiot savant" as terminology.In the end the latest politicaly correct term will be an insult in ten years anyway,why bother changing language.

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Mountain Goat
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28 Jan 2020, 8:46 am

Is autism a dissability? Varies considerably from person to person who is on thw spectrum, as some it effects in a physical way... Some it effects in a way where mentally they can't function doing certain taske. Some it effects both. Yet one or two can be on the spectrum and be blessed in being able to funcion without too many hinderences.

On the other side of the coin, put someone who is on thw spectrum and able to do it into a job where their special interest or key tallent lies and allistic people have no hope to catch up! So in that enviroment are allistic people dissabled because they don't have the concentration or depth that the autistic person has?

The problem is that there are many variables, and also the freedom of speech comes into the question. I defend the freedom of speech because when we say we are not allowed to use certain words, we have dissabled the principles of democracy, as by limiting what people can say, democracy becomes a group dictatorship. Many governing systems have democratic elections, but this does not make them a democracy. Communism often has democratic elections (Depending on the country). Even a dictatorship (To be honest, a dictator is a king... Here is the west we call them dictators as a devalued term because we assume democracy is better... Is it better? It depends on the ones in charge and the kind of people being governed as every countries people are different so democracy would easily be corrupted if one tries to introduce it in certain countries).

But here in the west, we have to defend the freedom of speech at all costs. BUT, this does not mean we can't be sensible and look for ways to make things easier for everyone. Now this requires comunication.
I don't like to use the term education as it implies brainwashing.
But if we come together and explain some of the issues that those on the spectrum have, and the more we explain things, the more people will start to understand... Then the easier it will be for those on the spectrum because their positive abilities and qualities will be more recognizable.
For example, if I was an employer and I wanted to find an employee to do a certain task and donit well, and I just so happen to find this task happens to be an autistic persons special interest.... And I can learn to adapt my workplace to make it a safe comfortable enviroment for my new key worker to thrive, I will be blessed as an employer and I will be happy to bless my employee. (Yes, I know this is theory, but why can't it work in practice?)

While I do see certain aspects as a dissability... Things I see in myself and I am not assessed yet so I don't even know if I am on the spectrum... But joining this site has opened my eyes to certain aspects of my character in which I had learned to live with (Uhmm. What choice do I have? )... So as I learnt to live with the areas I may struggle with I never realized how much I had been struggling until eventually things esculated and came to a point where I could not ignore them... (After hitting burnout after burnout over the last decade and a bit)... When I look back and see the things I used to be able to do which usually came through masking... And the things I can do now. How was I able to do those things for so long? :scratch:

Anyway... Going back on track. Words... How we describe things. I think these will naturally change as time goes on. I believe a better understanding about the autism spectrum and all the good and bad points to it, and more communicating to the general public out there so they understand more is the best way to overcome the difficulties.

And I sometimes read people saying when they try to describe their condition that they hate it when someone says "But everyone gets that?" If one hears that, have you considered that the person saying that may be on the spectrum themselves and not even know it? I say this, because it was one of the clues I had when I was dating a lady who has aspergers and she became a bit agitated when I said that because she assumed I was not on the spectrum. (I still don't know if I am or not but you may understand where I am coming from).
So don't be surprized if the odd person says something like that. Also realize that some who are not classed as being on the spectrum can share traits, so it is natural to say something like "But doesn't everyone get that?" and to their point of view they can identify the trait and have assumed in their life that it is something everyone shares.... (As they may not have realized that it is not so common to share it). Now I only mention this because many who later find they are on the spectrum or classed as a BAP will share the same traits to a varing degree. Some may be more effected. Some less. As if one has not even considered one may be on the spectrum, and ones struggles have been hidden where the persons concept of autism is a severe dissability (Was my concept because we are always shown the worst cases on the TV news) then one may not have realized that one may be on the spectrum. And so one would naturally puzzle when someone who has been assessed tries to describe their condition and struggles, and the one listening may puzzle because the one listening faces the same and had never considered that their strughles were autism related.

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28 Jan 2020, 8:57 am

They can change the name to ASG "Autism Special Gift".

Then we can all go around telling everyone how our lives are wonderful and we really do have a gift despite a chunck of us dying early as virgins having never worked or lived on our own with hideous other issues such as epilepsy and gross motor problems.

Then NTs and social security will cut off all help because we dont need any help, we dont have a disorder we can manage fine on our own or so there're told by self serving advocates, (many who actually rely on help themselves.

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28 Jan 2020, 9:55 am

carlos55 wrote:

Another reason why my favorite term "idiot savant" does work even today because it acknowledges disability and gift at the same time and you don't have to worry about these validating people gifts vs. understanding serious disability,the term encompasses both aspects of autism.

This old fashioned term works for the neurodiverse type people and works for the curebees as well,it should make everyone happy.Otherwise the PC term of today is just the insult of tommorow,remember when everyone thought "physically challenged or mentally challenged was the hip term 20,30 years ago but now such language is archaic an maybe even insulting.

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28 Jan 2020, 11:35 am

vermontsavant wrote:

The problem is the word "idiot" if people find "disorder" offensive there certainly not going to like the word "idiot"

Personaly i believe there's an element of self denial and immaturity on the part of some advocates to denny something a disorder when it so obviously is.

If your that high functioning and happy why bother going round claiming you have autism in the first place?

Why piggyback on a serious disability to excuse your life failures?

I wear specticles but dont go round claiming to be partially sighted ( even if technically i am in a small functional way)

You dont see wearers of specticals piggyback on blindness disorders claiming they like their fashion glasses so blindness shouldnt be cured?

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28 Jan 2020, 1:13 pm

Whether people like it or not to get a diagnosis of ASD/autism/Asperger's there has to be a degree of impairment .

Thinking your superhuman/ homo sapiens 2.0 is more likely to point to delusional mania than anything else .

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28 Jan 2020, 1:20 pm

carlos55 wrote:

vermontsavant wrote:

Some people are never going to be happy until you use the language they like,until of coarse the language goes out of fashion and they have a new disability sensitivity fetish.

There is always a disability sensitivity fetish going on then it leaves to make way for another one,people will never learn.

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28 Jan 2020, 4:04 pm

firemonkey wrote:

Absolutly wanting the “D” in ASD removed because you don’t want to feel you have a disorder is self denial and delusional.

vermontsavant wrote:

Yes agree but there comes a point when when things get diabolically silly and self defeating, I mean who`s going to support autistic people when people are going around saying we don’t have anything wrong with us?

On the serious matter of social security & welfare, wouldn’t it be a great get out clause for cash strapped governments to make it harder for autistic people to get the help they need if a vocal minority are publicly putting it out there that we no longer have a “medical disorder”

I mean if somebody is super high functioning and happy why do they feel they need to jump on the autism bandwagon by dictating to the rest less fortunate?

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28 Jan 2020, 4:57 pm

If a person doesn't think ASD impairs them in some way , then why pursue an assessment to see if they're on the spectrum?

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28 Jan 2020, 5:58 pm

firemonkey wrote:

If a person doesn't think ASD impairs them in some way , then why pursue an assessment to see if they're on the spectrum?

Agree

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28 Jan 2020, 7:55 pm

carlos55 wrote:

firemonkey wrote:

Absolutly wanting the “D” in ASD removed because you don’t want to feel you have a disorder is self denial and delusional.

vermontsavant wrote:

Simple -- people mistook, mistaken and misinterpret the Dehumanization for the Disorder.
And in turn, mistook getting rid of Disorder means Delusions and Denial in certain contexts.

What are the odds and how much a Disability or any Difference or Deviance really, equates to any form of Dehumanizing dictated by the norm?
How much Dysympathy? And how much Disregard for every individual and Double standard?

Yeah, people and the world would support those with disorders alright.
It is logical to recent era ethics and it is the right thing to do to the commonly agreed morals.

But think about this; would people and the world support any label that had been dehumanized by the nature of the disorder -- not just simply disorder but any difference really?
Let's have fun with the letter D before someone Derails it. :lol:

Think about it -- sure, a blind person and an autistic are both disabled and both have impairments.
But between the two, which is less humanized?

To unaware people, a blind person can still interact, can still have dreams, can be presumed competence.
But how about autistics? Whether presumed competence or incompetence, how much is dehumanized compared to other disorders or any condition really?

TLDR;
I think people are targeting the wrong ideas.
This isn't really about competence and incompetence, nor potential society's human resource investments.

Would getting rid of 'Disorder' from autism lessen the Dehumanization of autism?

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28 Jan 2020, 8:14 pm

I really hate all this insistence that autism is a difference instead of a disability, disorder, etc. Maybe for some people it is, but then there are people like me who are absolutely disabled by it and don't get benefits in return. I feel belittled and patronized when people insist on calling autism "a difference, not a disorder."

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28 Jan 2020, 8:35 pm

dragonsanddemons wrote:

Why have you not been able to obtain benefits? Wrong Planet user blazingstar might be able to help you in that regard, she does that professionally.

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28 Jan 2020, 9:09 pm

ASPartOfMe wrote:

dragonsanddemons wrote:

Why have you not been able to obtain benefits? Wrong Planet user blazingstar might be able to help you in that regard, she does that professionally.

I do get SSI at least, I meant I don't get anything positive directly from the autism. I don't have any useful special interests, I can't hyperfocus on anything other than the special interests I do have, I used to have the stereotypical Aspie memory but lost it to depression and ECT, stuff like that.

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29 Jan 2020, 3:48 am

I'm 63. I've never worked . I've had very few friends . I need help to maintain a reasonably healthy level of independence , i.e one where I'm not self neglecting .

I have no super powers . Whichever way you slice it and dice it how I am most definitely isn't a gift .

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