Autism Speaks played a huuuge part in making that the dominant narrative about autism for the past 20 years or so.
In the 00s (maybe early 10s?) one of the videos they made for parents of newly diagnosed children had a parent talking about how she was considering driving off a bridge to kill herself and her autistic child, but didn’t because her non-autistic child was also in the car. This was presented as totally normal and just a way to prepare for how an autistic child will ruin your life.
I get what you’re saying, and caretakers certainly deserve support, even (especially!) when they’re talking about wanting to kill their own child, even if for no other reason than the child’s safety.
IMO Autism Speaks’ biggest issue is that their money comes from marketing autism as a horrible disease that affects only or primarily children, which only increases stigma against autistic people of all ages. They also have the problem of having no autistic members involved in a meaningful capacity in the organization, and AFAIK the only autistic member of their board of directors left because they were essentially ignored. That absolutely flies in the face of decades of disability advocacy, where a common refrain is “nothing about us without us.”
TL;DR: caretakers deserve support but Autism Speaks is super awful.
When that kind of parents how their autistic child is very difficult and that it keeps getting worse I am always feeling like : Karen, only 10 % of your kid issues are caused by his autism, the 90% are 100% because you treat him like shit and he is turbo-traumatized
Suicide is one of the top three causes of death for autistic people. The other two are heart disease and epilepsy complications, and on average we die under 50 years of age.
What they don’t understand though is that the suicide part isn’t caused by autism. It’s caused by people being horrible to each other. Or in other words: people with autism die because people without it make living hell for them.
My daughter has it, and I’d say about 5-10 years ago it changed. The amount of acceptance is so much higher than it used to be. Obviously we need work, but hell in my city there are special times at both grocery stores and movie theatres for neuro-diverse people. The difference to a decade ago is extreme.
actually everyone treat others like shit. But what NT have is a much stronger upport circle and fewer difference.
By fewer difference I mean that you cant pick on someone that everyone around him does : A boss can’t really bully a NT for using implicite dicourse when all of their collegues does the exact same, they would immediately realise something is wrong. The average NT knowing jackshit about autism, it can be easy to trick them into thinking that ND should “just make an effort” to understand implicite discourse.
That’s sad part, we are technically all targeted with the same amount of flak so if you are slightly out of cover, you get blasted away
i think that the mistreatment of folks with autism is not enough to explain to have this high of a suicide rate, and that autism does just make life harder to deal with, regardless of discrimination
So there’s a lot more suffering in general for anyone basically not white, straight, (and depending on circumstances, male). Autism isn’t a death sentence. While people with severe autism struggle a lot more than most, they can have very good fulfilling lives. Source: My daughter (23) has (moderate) autism and her best friend (23) has severe.
can add the healthy for white and straight if you’re in the USA.
Also just methodologically poc are faced with very different risk with racially motivated crimes and the fact that ethnic getthoisation create strong social support structures will help curb suicidal tendencies.
Even if the struggles can be similar, the supplementary problem with LGBTQ+, is loneliness. There are actually very few of them, so finding people like you that understand your struggles is very difficult. That really hit me when I talked for the first time with people leading association supporting LGBTQ, most of the work is reaching out to people to tell them they are not alone
It’s a mix of the ABA industry, early researchers and socio-environmental issues.
Early researchers cultivate the myth of the normative human. Autists were an altered version of human that has to be corrected. If a human wasn’t corrected to match the norm, it could not be happy in life and will suffer it’s entire life.
So autists have to be corrected (we know it’s false) to be happy whatever the means. It ended with electric shock and others stuffs seen during WW2. This is how ABA was created. It relies on the fears of autists not being happy until they are corrected.
ABA, PBT and all the others acronyms has built an industry worth a lot of money. They finance more research on the field with huge standard, COI and consent issues among others. They need to keep the fear in the population to keep the business up.
The third is the new way to see autism. The struggles of autists are mostly socio-environmental. It means that issues aren’t the person and autism. It’s a lack of acceptance of the diversity by the neurological majority. It implies discrimination, patronizing, and violence against autists.
Early researchers cultivate the myth of the normative human.
We are still there with mental illness. People have this idea that there are “normal” people and those who require therapy, as if there is a single person on earth that didn’t come out of their childhood with some level of trauma.
Well actually not that much.
Two things.
First, some trauma can be dealt with thanks to your support circle.
Second, the thing is our experience of others is never representative of the overall society. You could look at my social circle and claim it as an argument. But that is not taking in account that my circle is small and not made of average people.
Lastly. Everyone suffered a cold once, they were not damned, not everyone is constantly sick. Though you wouldn’t say there is no difference between sick and healthy people. Still everyone will go to the doctor once. In my country that is this approach much closer to physiological medicine that mental health professional promote.
Why do they think autism is some sort of horror story where kids suffer in agony or something?
Autism Speaks played a huuuge part in making that the dominant narrative about autism for the past 20 years or so.
In the 00s (maybe early 10s?) one of the videos they made for parents of newly diagnosed children had a parent talking about how she was considering driving off a bridge to kill herself and her autistic child, but didn’t because her non-autistic child was also in the car. This was presented as totally normal and just a way to prepare for how an autistic child will ruin your life.
Autism Speaks is disgusting. What an awful organization. I wish more people knew that.
I didn’t know until I saw it getting trashed on the autism subreddit and asked why… So keep getting the word out!
I will. I don’t have ASD but several of my loved ones do and I’m glad Autism Speaks hasn’t gotten to them and made them ashamed of who they are.
I had no idea that existed. Wtf
But, there must be ways to manage the ill effects of Autism. Parents can talk to experts, instead dealing with it on their own.
I get what you’re saying, and caretakers certainly deserve support, even (especially!) when they’re talking about wanting to kill their own child, even if for no other reason than the child’s safety.
IMO Autism Speaks’ biggest issue is that their money comes from marketing autism as a horrible disease that affects only or primarily children, which only increases stigma against autistic people of all ages. They also have the problem of having no autistic members involved in a meaningful capacity in the organization, and AFAIK the only autistic member of their board of directors left because they were essentially ignored. That absolutely flies in the face of decades of disability advocacy, where a common refrain is “nothing about us without us.”
TL;DR: caretakers deserve support but Autism Speaks is super awful.
Malicious misinformation is nothing new I guess.
very sane behaviour regarding your child.
When that kind of parents how their autistic child is very difficult and that it keeps getting worse I am always feeling like : Karen, only 10 % of your kid issues are caused by his autism, the 90% are 100% because you treat him like shit and he is turbo-traumatized
Suicide is one of the top three causes of death for autistic people. The other two are heart disease and epilepsy complications, and on average we die under 50 years of age.
What they don’t understand though is that the suicide part isn’t caused by autism. It’s caused by people being horrible to each other. Or in other words: people with autism die because people without it make living hell for them.
Yes, but that’s not due to autism, that’s due to the way society treats autistic people.
So when is that going to change
I’d love to know.
My daughter has it, and I’d say about 5-10 years ago it changed. The amount of acceptance is so much higher than it used to be. Obviously we need work, but hell in my city there are special times at both grocery stores and movie theatres for neuro-diverse people. The difference to a decade ago is extreme.
It’s beginning to change in the academic world. The deficit model is falling for the difference/diversity paradigm.
no
actually everyone treat others like shit. But what NT have is a much stronger upport circle and fewer difference.
By fewer difference I mean that you cant pick on someone that everyone around him does : A boss can’t really bully a NT for using implicite dicourse when all of their collegues does the exact same, they would immediately realise something is wrong. The average NT knowing jackshit about autism, it can be easy to trick them into thinking that ND should “just make an effort” to understand implicite discourse.
That’s sad part, we are technically all targeted with the same amount of flak so if you are slightly out of cover, you get blasted away
That’s simply not true.
that might be an exageration but that is surprisingly common
supposedly
Do tell us your theory.
no thanks, but if youve got some proof id be happy to read it
So you don’t have any idea why so many people on the spectrum commit suicide but you don’t think it’s the way they’re regularly mistreated?
i think that the mistreatment of folks with autism is not enough to explain to have this high of a suicide rate, and that autism does just make life harder to deal with, regardless of discrimination
And yet you have no other answers. So until you have them, that seems to be a good working theory.
It’s also the 2nd leading cause of death for 2SLGBTQ+ youth:
So there’s a lot more suffering in general for anyone basically not white, straight, (and depending on circumstances, male). Autism isn’t a death sentence. While people with severe autism struggle a lot more than most, they can have very good fulfilling lives. Source: My daughter (23) has (moderate) autism and her best friend (23) has severe.
can add the healthy for white and straight if you’re in the USA. Also just methodologically poc are faced with very different risk with racially motivated crimes and the fact that ethnic getthoisation create strong social support structures will help curb suicidal tendencies.
Even if the struggles can be similar, the supplementary problem with LGBTQ+, is loneliness. There are actually very few of them, so finding people like you that understand your struggles is very difficult. That really hit me when I talked for the first time with people leading association supporting LGBTQ, most of the work is reaching out to people to tell them they are not alone
It’s a mix of the ABA industry, early researchers and socio-environmental issues.
Early researchers cultivate the myth of the normative human. Autists were an altered version of human that has to be corrected. If a human wasn’t corrected to match the norm, it could not be happy in life and will suffer it’s entire life.
So autists have to be corrected (we know it’s false) to be happy whatever the means. It ended with electric shock and others stuffs seen during WW2. This is how ABA was created. It relies on the fears of autists not being happy until they are corrected.
ABA, PBT and all the others acronyms has built an industry worth a lot of money. They finance more research on the field with huge standard, COI and consent issues among others. They need to keep the fear in the population to keep the business up.
The third is the new way to see autism. The struggles of autists are mostly socio-environmental. It means that issues aren’t the person and autism. It’s a lack of acceptance of the diversity by the neurological majority. It implies discrimination, patronizing, and violence against autists.
We are still there with mental illness. People have this idea that there are “normal” people and those who require therapy, as if there is a single person on earth that didn’t come out of their childhood with some level of trauma.
Well actually not that much. Two things. First, some trauma can be dealt with thanks to your support circle. Second, the thing is our experience of others is never representative of the overall society. You could look at my social circle and claim it as an argument. But that is not taking in account that my circle is small and not made of average people.
Lastly. Everyone suffered a cold once, they were not damned, not everyone is constantly sick. Though you wouldn’t say there is no difference between sick and healthy people. Still everyone will go to the doctor once. In my country that is this approach much closer to physiological medicine that mental health professional promote.
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