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ASPartOfMe
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21 Feb 2024, 9:54 am

A Personal Perspective: Why including all autistic people's voices is important.
Clair Jack, Ph.D. was diagnosed as Autistic in her 40s

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But this doesn't mean I reject the fact that there are vastly differing experiences of autism and that people, including parents of autistic children, should be allowed to choose language that makes sense to them and fits with their values without risking being silenced for doing so.

Levels of Autism
From a personal perspective, when I was going through the research and diagnostic process a few years ago, the levels of autism made, and continue to make, complete sense to me. My experience of being autistic contrasts significantly with someone with level 2 or 3 autism. My experience of parenting a child who will, one day, be able to leave home and be financially independent and have a range of options available to him is also completely different from someone who is parenting a child who will always require a significant level of support.

As an autistic woman and mother of an autistic son, I consider myself a neurodiversity advocate. Much of my time is spent helping people to accept, normalise, and embrace their autistic traits and experiences and encouraging them to ask for accommodations that help them adapt the world around them to their needs or differences.

It doesn't mean my experience is "better"—having level 1 autism comes with a substantial series of challenges—but it means that it is significantly different. Having the vocabulary to express that difference, particularly to people who know very little about autism, is important to me.

It's also important to most of my clients, who are predominantly adult women seeking out a diagnosis later in life. When I explain what autism is, or when they have conducted their own research, they can identify with other autistic people who, like them, have led a life so far which has allowed their autism to go undetected. It also provides them with the vocabulary to talk to employers or access a level of therapeutic support appropriate for their needs.

Medical Model
While the "medical model" of autism is criticised for identifying autism as a disorder characterised by deficits or impairments, it provides a voice for some parents of autistic children who are severely impacted by autism. It also provides a voice for people not in a position to view autism positively.

Some also find that medicalising their condition, through their use of language, helps them acknowledge the devastating impact it has had on their life. Symptoms like severe and potentially violent or self-injurious meltdowns, perseverative thinking, executive function issues, extreme distress around change, sensory processing issues—sometimes to the point of being unable to sit in a classroom or restaurant—consistent anxiety, and a need for sameness affect autistic people daily. Calling for language that "neutralises" their experience—to the point where it is unacceptable for them to talk about autism in terms of severity or disability—reduces their means of expression. If someone finds it more accessible to talk in terms of autistic symptoms that they feel are limiting, disabling, or severe, they should have the right to do so.

Neurodiversity-affirming language represents a generally positive shift for many autistic people. But those who choose to think and talk about their, or their children's, experience in ways which draw more heavily on a medical model, or which stress the negative impacts of autism, should be allowed to do so. If we replace one exclusionary discourse with another, we're simply silencing an entire section of the autistic community.

Words of Wisdom from Claire

In the first year or so after I was diagnosed I had a pretty “Autism Justice Warrior” attitude. Then I realized that attitude is both counterproductive and doing unto others what I hated done to me.

A few points.

We should separate being realistic about the impairments, from the cursed for life attitude.

While I am for letting autistics describe their autism as they please, how parents think and describe their children effects their children. They could try and hide their attitude but their children often will pick up on it.

I am not at all advocating scolding or language policing parents. The minute you do that you have made the problem worse. Maternal protective instinct kicks in and the parents will double down on the attitude you are trying change. Parents with negative attitudes need to be gradually persuaded that just because their kid is “profoundly autistic” is not necessarily a guarantee they will never obtain any degree of independence.

A lot of us are unable to hold back when we see harmful or offensive behavior. In recent years the phrase “Silence = violence” has gained currency. I do not agree with that. Sometimes it is best to stay out of it.


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carlos55
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22 Feb 2024, 4:31 am

Generally agree with this thinking. I think i said a while back we already have had something in place for both groups for 100 years or more, AKA religion & science.

If i get into an accident and need an urgent blood transfusion our NHS will probably give me one. However if i wear a particular religious necklace and/or the doctors are told i belong to a particular religion that forbids blood transfusions they wont give me one.

So in the same way the default is science or the medical model of autism and people have the right to opt out of that thinking if they so wish.

They may just get frustrated when they have to justify why they need help, or get ignored by society if they go round saying there is nothing wrong with them.


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colliegrace
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22 Feb 2024, 4:54 am

I think in general the voices of people with levels 2 and 3 autism tend to be drowned out by levels 1's. The only platform where I've really seen more level 2 and 3 rep is tumblr, actually. I follow several level 2 and 3 people there, including some with intellectual disability.

That said, some of the more severely affected cannot really communicate easily, even online. Some of the accounts I follow need help from their caretakers to interact online, others can only find their words sometimes.


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Mountain Goat
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22 Feb 2024, 6:38 am

What level of autism do I have? How do I know? Don't remember what the levels are.
I have a list of results, but does not mention level 1, 2 or 3 in it.


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22 Feb 2024, 7:16 am

There's medicalization and then there's social acceptance.
Two very distinct phenomenons, two different priorities.

Again -- people typically cannot see separates or harmoniously both in the same person, let alone in a group of individuals.

Mixing the semantics, gone into polarization, lumping everyone or excluding a particular group...

Heh, people overall in the autism community at large have ways to go.



I say, go on -- put it in a discussion. :twisted:
Untangle it all by themselves.

Ask questions -- and my suggestion around separation will be around the idea and concept of informed consent, performance, basics of functioning and independence; and inclusion will be about individual fluctuations, relative situations/fluidity in levels and personal/cultural standards.

Since team medical is so rigid and team social is so flexible...
I'll wait everyone to "grow up". :roll:


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carlos55
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22 Feb 2024, 1:41 pm

Edna3362 wrote:
There's medicalization and then there's social acceptance.
Two very distinct phenomenons, two different priorities.

Again -- people typically cannot see separates or harmoniously both in the same person, let alone in a group of individuals.

Mixing the semantics, gone into polarization, lumping everyone or excluding a particular group...

Heh, people overall in the autism community at large have ways to go.



I say, go on -- put it in a discussion. :twisted:
Untangle it all by themselves.

Ask questions -- and my suggestion around separation will be around the idea and concept of informed consent, performance, basics of functioning and independence; and inclusion will be about individual fluctuations, relative situations/fluidity in levels and personal/cultural standards.

Since team medical is so rigid and team social is so flexible...
I'll wait everyone to "grow up". :roll:


There is and for a long time always been social acceptance of autism. That is unless where you live you have gangs roaming the streets hunting for autistic people to drive out of town.

I don't wake up to a mob of angry neighbours wanting me dead, in fact nobody cares, nobody even hardly cares about someone with schizophrenia near me and that's a lot more scarier, linked to violent behaviour in the media.

Maybe what your referring to is behaviour or acceptance of odd behaviour, which is something else & a lot more complicated.

Society is told to watch out for odd behaviour, the man acting suspiciously on the subway may be a terrorist or just an autistic with anxiety, the man staring at the woman on the bus may be a harmless autistic & that's part of his behaviour, or he may be planning to follow her home & rape her.

This is made complicated by crimes committed by autistic people. Some odd aspie teenagers went on to become mass shooters after all.

Nobody knows or can know & its unlikely anyone or society is going to change or put themselves or everyone at risk just to suit a small number of people


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Edna3362
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22 Feb 2024, 2:08 pm

carlos55 wrote:
Edna3362 wrote:
There's medicalization and then there's social acceptance.
Two very distinct phenomenons, two different priorities.

Again -- people typically cannot see separates or harmoniously both in the same person, let alone in a group of individuals.

Mixing the semantics, gone into polarization, lumping everyone or excluding a particular group...

Heh, people overall in the autism community at large have ways to go.



I say, go on -- put it in a discussion. :twisted:
Untangle it all by themselves.

Ask questions -- and my suggestion around separation will be around the idea and concept of informed consent, performance, basics of functioning and independence; and inclusion will be about individual fluctuations, relative situations/fluidity in levels and personal/cultural standards.

Since team medical is so rigid and team social is so flexible...
I'll wait everyone to "grow up". :roll:


There is and for a long time always been social acceptance of autism. That is unless where you live you have gangs roaming the streets hunting for autistic people to drive out of town.

I don't wake up to a mob of angry neighbours wanting me dead, in fact nobody cares, nobody even hardly cares about someone with schizophrenia near me and that's a lot more scarier, linked to violent behaviour in the media.

Maybe what your referring to is behaviour or acceptance of odd behaviour, which is something else & a lot more complicated.

Society is told to watch out for odd behaviour, the man acting suspiciously on the subway may be a terrorist or just an autistic with anxiety, the man staring at the woman on the bus may be a harmless autistic & that's part of his behaviour, or he may be planning to follow her home & rape her.

This is made complicated by crimes committed by autistic people. Some odd aspie teenagers went on to become mass shooters after all.

Nobody knows or can know & its unlikely anyone or society is going to change or put themselves or everyone at risk just to suit a small number of people

I'm very aware that 'society' is not going to change for a very small group of people.

Like how 'society' is not going green and all go eco friendly to save the world from climate change, or all should learn sign language so the deaf will not be considered disabled -- and could care less about several hundred other conditions they "should" be "made aware of", and "adjust to".

Autism is not special. You seem to like to make it so. :lol:

Doesn't damn mean people cannot change their own locales or the people who mattered more in an individual's life, cannot change their respective communities and stay away from the majority harmful ones, and cannot change where they are where said hostile behaviors exists.

'Society' is relative, as media is with their 'audience'.
That's where acceptance or non-acceptance is, so do it's bias.

Human nature, social conditioning, and so-called 'normal behaviors' has an even way longer way from keeping up with the knowledge and technology it can attain and possess.

That's an entirely another matter, bigger than the matters of the autism label, bigger than neurodiversity advocacy, bigger than any activism that ever exists so far.

And unlike the autism community becoming more harmonized from polarization -- possible within few decades, I highly doubt I can wait for the very aspects of humanity and the way society forms to 'grow up'... :roll:

Not for another few centuries, not even after the collective knowledge and awareness of generational patterns and human fundamentals that caused said stigmas and behaviors in the first place -- which is barely starting recently.

Most of this post is for everyone who can read.


And -- since you (poster I quoted and replied to) cannot grasp the idea of accepting autism; only intellectual at best it seems...
... :P I'm not going to elaborate anything whatever it meant by 'acceptance'.

Believe what you believe, even includes telling any naive fool that autism is not a difference but a disease to be purged.

There are no winners and losers in this stupid game. It's just a stupid game. That's all I can say.


Could care less whose voice is which -- all I can say about them all is 'growing old news soon'.


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