actnowforsevereautism new campaign & controversial video

Page 1 of 1 [ 16 posts ] 

carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 940

07 Oct 2021, 8:35 am

Looks like Severe Autism advocates are making a new pitch at being heard under "actnowforsevereautism" with some more proactive public & political campaigning in response to Neurodiversity and what critics would call the sugarcoating of the reality of autism for many.

Many in ND who don’t like to be associated with severe autism or approve of identities of sufferers revealed will find their new video controversial, however not sure how else they could make an educational video to show symptoms without this, maybe blurring part of the face but would it be as effective don`t know?

http://actnowforsevereautism.com/


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


Ettina
Veteran
Veteran

User avatar

Joined: 13 Jan 2011
Age: 32
Gender: Female
Posts: 3,796

07 Oct 2021, 10:27 am

Sounds like yet another anti-ND group pretending that ND is only about high functioning autistic people while completely ignoring AAC users who support ND. It's nothing unique, just rehashing the same myths about neurodiversity.



carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 940

07 Oct 2021, 11:45 am

Ettina wrote:
Sounds like yet another anti-ND group pretending that ND is only about high functioning autistic people while completely ignoring AAC users who support ND. It's nothing unique, just rehashing the same myths about neurodiversity.


Well obviously ND dont do enough which is why these groups were formed. Also to show that natural difference, celebrating autism and non pathology as stated in the ND paradigm dont apply.


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 64
Gender: Male
Posts: 26,551
Location: Long Island, New York

07 Oct 2021, 6:49 pm

I an very much against parents showing to the world their kids doing humiliating things specifically, and am against using their kids to score political points.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“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


Velorum
Veteran
Veteran

User avatar

Joined: 11 Mar 2020
Age: 62
Gender: Male
Posts: 1,219
Location: UK

07 Oct 2021, 9:32 pm

More functioning label bullsh*t.

Once again, autism is being conflated with intellectual disability.

I think some parents feel more comfortable with a label that is not a descriptor of intellectual functioning, even when the child's issues and challenges relate more to this.

Just because I am a graduate at masters level and articulate why is it assumed by these folk that my autism is 'mild' or not as impactive on how I relate to and understand the world?


_________________
Autistic member of the neurodivergent community


ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 64
Gender: Male
Posts: 26,551
Location: Long Island, New York

08 Oct 2021, 1:56 pm

Velorum wrote:
Just because I am a graduate at masters level and articulate why is it assumed by these folk that my autism is 'mild' or not as impactive on how I relate to and understand the world?

Because people see how you present not what goes inside your mind and not what you do when nobody is around.

If your autism causes you to feel like you are being shocked every time somebody touches you, can not take the texture of most clothing or foods, the slightest break in routine is unbearable etc no amount of intellectual ability will get you to a masters degree. That is severe autism.

None of the above should be misconstrued. I do think functioning levels are misleading. I think the amount of impairment caused by Autism is often overestimated and often impairments caused by other factors or a combination of autism and other factors such as intellectual disability and autism unfriendly environments is underestimated. Another factor making functioning labels problematic is we can be very skilled in one area and clueless not only in a different areas but in somethings seemingly closely related.

There are degrees in most any human experience, be it left handedness, depression, sexuality, gender identity, cancer etc. I see no reason why autism should be any different. Acknowledging that is not being a traitor to the neurodiversity cause.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“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


carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 940

08 Oct 2021, 2:23 pm

Velorum wrote:
More functioning label bullsh*t.

Once again, autism is being conflated with intellectual disability.

I think some parents feel more comfortable with a label that is not a descriptor of intellectual functioning, even when the child's issues and challenges relate more to this.

Just because I am a graduate at masters level and articulate why is it assumed by these folk that my autism is 'mild' or not as impactive on how I relate to and understand the world?


It’s related to Level 3 autism, these people are still autistic but their symptoms are so severe they cannot live independent lives & they usually live to around 40, many constantly self-harm in a repetitive public way such as head banging or eye pulling.

Many are Intellectually Disabled but not all, I watched a documentary where a mother claimed her daughter was quite intelligent but unfortunately her symptoms were so severe, she ended up in a care home where she was abused as an adult.

Sadly, their condition is largely ignored by society or suppressed by many in the ND movement who seem to prefer to talk about those at the opposite end of the spectrum and get angry when more disabled autistics are shown. Also, the language of ND, like celebrating differences or autism is a gift doesn’t seem to be appropriate to an adult with the living skills of a 3-year-old, nonverbal severely disabled who bites & constantly punches their self in the face all the time

I understand they want to change the public perception of autism as they believe it may assist with job opportunities and may not want to be associated with those like on the video.

Sadly, they have autism too so their families feel the need to be included in the conversation.


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 940

08 Oct 2021, 2:29 pm

ASPartOfMe wrote:
Velorum wrote:
Just because I am a graduate at masters level and articulate why is it assumed by these folk that my autism is 'mild' or not as impactive on how I relate to and understand the world?

Because people see how you present not what goes inside your mind and not what you do when nobody is around.

If your autism causes you to feel like you are being shocked every time somebody touches you, can not take the texture of most clothing or foods, the slightest break in routine is unbearable etc no amount of intellectual ability will get you to a masters degree. That is severe autism.

None of the above should be misconstrued. I do think functioning levels are misleading. I think the amount of impairment caused by Autism is often overestimated and often impairments caused by other factors or a combination of autism and other factors such as intellectual disability and autism unfriendly environments is underestimated. Another factor making functioning labels problematic is we can be very skilled in one area and clueless not only in a different areas but in somethings seemingly closely related.

There are degrees in most any human experience, be it left handedness, depression, sexuality, gender identity, cancer etc. I see no reason why autism should be any different. Acknowledging that is not being a traitor to the neurodiversity cause.


Functioning labels can fluctuate so not always a great description, but i suppose autism is so heterogeneous its the only way medical community can make sense of it all.

At the end of the day there needs to be a way of describing a persons level of care needs that people can understand.


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


blazingstar
Veteran
Veteran

User avatar

Joined: 19 Nov 2017
Age: 67
Gender: Female
Posts: 5,020

08 Oct 2021, 4:33 pm

I work with children and adults with severe autism. Like the ones in the video. And ones who are much, much worse than what you saw there. I find it difficult on WP to listen to these threads. Anyone who can participate in this forum is as different from my clients as night from day.

I can tell you my heart breaks when I observe these profoundly affected individuals and the damage it also does to the families. People on this forum don't believe it, or resent it if parents feel stressed by dealing with a child with autism. It's because you have not seen it. You have not been in these homes and seen the destruction wrought by children so disturbed they can smash out windows, break furniture, injure siblings, injure parents, injure caregivers. What I see is a terribly lonely person, in terrible pain, with no way to express what is going on in his or her brain.

What is so awful in their brains that they must bang their heads against a wall up to 40 times per minute, constantly, to block it?

Some of them are smart, and they set fire to the family home, tie a noose around a siblings neck and try to strangle her, take a knife with the intention of stabbing a sleeping parent. And these are not intellectually challenged autists.

I don't like labels either. I don't like all the politics surrounding autism. I do understand that what is inside many of us, is not observable on the outside, and so the observers believe we are more capable than we are. Or maybe it is the cost to appear normal is not apparent.

But these kids and adults are real, they are in terrible pain, their families are broken, and services are inadequate.

Sorry for the rant. This is something that strikes close to home.


_________________
paralysis by over-analysis


Ettina
Veteran
Veteran

User avatar

Joined: 13 Jan 2011
Age: 32
Gender: Female
Posts: 3,796

08 Oct 2021, 6:03 pm

carlos55 wrote:
Ettina wrote:
Sounds like yet another anti-ND group pretending that ND is only about high functioning autistic people while completely ignoring AAC users who support ND. It's nothing unique, just rehashing the same myths about neurodiversity.


Well obviously ND dont do enough which is why these groups were formed. Also to show that natural difference, celebrating autism and non pathology as stated in the ND paradigm dont apply.


What more could we do? Nothing short of agreeing "yeah, only high functioning people deserve human rights" would satisfy those people.

What causes this misunderstanding is people not being able to conceive of actually seeing a genuine disability as anything other than a horrible tragedy. It's ableism so deep that people can't even conceive of a non-ableist viewpoint that acknowledges the existence of severely impaired people.

Neurodiversity is about saying that quality of life and your value as a person, neither of those actually have anything to do with what you can or can't do. And that all minds are valuable, not just the ones with the shiny noses that can light Santa's way. Neurodiversity is about looking at a nonverbal person with significant cognitive disability and seeing a valuable human being who doesn't need to become more normal to be a worthwhile person.

Recognizing that someone is severely disabled doesn't have to mean pitying them, seeing them as inferior, or wishing that they weren't disabled.



carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 940

09 Oct 2021, 9:42 am

Quote:
. Recognizing that someone is severely disabled doesn't have to mean pitying them, seeing them as inferior, or wishing that they weren't disabled.


My aunt wished her severely disabled autistic son wasn’t disabled when she had to bury him.

From memory nobody mistreated him while he was alive or thought he wasn’t a human being.

I suspect many parents wish their kid wasn’t severely autistic when they have to put them in residential care usually when their too old to look after them.


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


firemonkey
Veteran
Veteran

User avatar

Joined: 23 Mar 2015
Gender: Male
Posts: 4,909
Location: Calne,England

09 Oct 2021, 11:08 am

ASPartOfMe wrote:
Another factor making functioning labels problematic is we can be very skilled in one area and clueless not only in a different areas but in somethings seemingly closely related.



For 44 years as a psych patient I was seen as contrary/passive aggressive/lazy etc for not living up to expectations. The one I remember most was during my last inpatient stay. I was and sent to the OT dept to to do a cookery course. All went fairly well until I was given the job of peeling and cutting the spuds with a kitchen knife. I struggled. It was taking me ages. The OT intervened and took over. I was then kicked off the course for being uncooperative.

Most interactions mental health wise are highly verbal. That's my area of strength. However when it comes to manual and practical tasks I struggle. That creates a situation where I'm listed on the 'World genius directory' but need practical help and support , without which I'd struggle to maintain an acceptable level of independence.

My (s) daughter cottoned on to things in a way no mental health professional had ever done. It was the driving force behind many attempts to get me to move near her after her mum died. Due to high anxiety I refused time and time again to do so. That is until the block of flats I was living was earmarked to be demolished.

She did all the work necessary to get me here including liaising with mental health and social services. It helped she'd had a 20 year plus career working with the elderly,those who are autistic,those with mental illness, those with physical disability, SEN/intellectual disability. She's currently branch manager of a home care company.


_________________
Support mental health research
Please support mental health research
http://www.mentalhealthresearchuk.org.uk/
http://mcpin.org/
https://www.mqmentalhealth.org/


Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


Joe90
Veteran
Veteran

User avatar

Joined: 23 Feb 2010
Gender: Female
Posts: 21,309
Location: UK

10 Oct 2021, 6:02 am

Quote:
Functioning labels can fluctuate so not always a great description, but i suppose autism is so heterogeneous its the only way medical community can make sense of it all.

At the end of the day there needs to be a way of describing a persons level of care needs that people can understand.


This.
I wish Aspies wouldn't get so worked up about functioning labels. Sometimes functioning labels are helpful. I'm not saying everyone on the spectrum must be labelled by function abilities, but some of us are more "mild" than others.

I'm a textbook example of a person on the high-functioning end of the spectrum, and nobody can argue otherwise.


_________________
Female
Aged 31
On antidepressants
Have ASD, ADHD and anxiety disorder
Empathy score: 61 out of a possible 80. (High)


Ettina
Veteran
Veteran

User avatar

Joined: 13 Jan 2011
Age: 32
Gender: Female
Posts: 3,796

11 Oct 2021, 3:10 pm

carlos55 wrote:
Quote:
. Recognizing that someone is severely disabled doesn't have to mean pitying them, seeing them as inferior, or wishing that they weren't disabled.


My aunt wished her severely disabled autistic son wasn’t disabled when she had to bury him.


Autism doesn't affect life expectancy. What actually caused his death?



carlos55
Veteran
Veteran

Joined: 5 Mar 2018
Gender: Male
Posts: 940

11 Oct 2021, 4:28 pm

Ettina wrote:
carlos55 wrote:
Quote:
. Recognizing that someone is severely disabled doesn't have to mean pitying them, seeing them as inferior, or wishing that they weren't disabled.


My aunt wished her severely disabled autistic son wasn’t disabled when she had to bury him.


Autism doesn't affect life expectancy. What actually caused his death?


A quick google search on autism and life expectancy will show you that isn’t true.

I don’t know the exact cause of death since conditions lead to other conditions obesity for example being leads to heart disease but it’s the being obese that kills.

His health deteriorated after early 40s and he died of kidney failure.

Which is above average for severe autism which is 36.

In fact since reading your comment I googled autism and kidney disease for the first time and found a link apparently there’s a gene bizarrely named “teashirt” responsible in some cases.

Amazing the scientific facts about autism on google if you look.

https://en.m.wikipedia.org/wiki/Conditi ... _disorders


_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

- George Bernie Shaw


Ettina
Veteran
Veteran

User avatar

Joined: 13 Jan 2011
Age: 32
Gender: Female
Posts: 3,796

25 Oct 2021, 3:08 pm

carlos55 wrote:
Ettina wrote:
carlos55 wrote:
Quote:
. Recognizing that someone is severely disabled doesn't have to mean pitying them, seeing them as inferior, or wishing that they weren't disabled.


My aunt wished her severely disabled autistic son wasn’t disabled when she had to bury him.


Autism doesn't affect life expectancy. What actually caused his death?


His health deteriorated after early 40s and he died of kidney failure


Autism =|= kidney failure

I fully support a cure for kidney failure. Regardless of whether the person with kidney failure happens to also be autistic.

Down Syndrome increases the risk of a variety of health issues. That doesn't mean that changing the brain of someone with Down Syndrome to be neurotypical wouldn't be horrific. Curing associated health issues is totally different from curing a different way of thinking and learning.