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ASPartOfMe
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04 Oct 2019, 2:53 am

Autistics United ask to be heard as they protest Richmond march

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Autistics United Vancouver — a self-advocacy group — will march this Sunday in Richmond to protest a walk that claims to speak for them.
The message that Autistics United members want to send is that autistic people should be allowed to speak for themselves, that they don’t want to be labelled a tragedy that needs to be grieved and they don’t want their behaviours suppressed

Sam McCulligh is an autistic person. He says he doesn’t just “have” autism — it’s not something that can be neatly tucked away in his pocket, rather, it’s a core part of his identity.

This is why therapies used to minimize autistic behaviour or “camouflage” autistic people are so distasteful to him.

McCulligh and Vivian Ly are the Vancouver chapter leaders of Autistics United, a self-advocacy organization with five chapters across Canada that work to improve the lives of autistic people.
They will both be protesting on Sunday at the annual Autism Speaks Canada fundraiser, whose goal is to raise $80,000.

Autism Speaks Canada supports research into autism, provides family services and resources. They defend ABA as “evidence based treatment.”
McCulligh and Ly don’t mean to criticize families for coming out to the walk, rather to educate them on the messages and mandate of Autism Speaks.

Greta Thunberg, the 16-year-old Swedish girl who sparked the Global Climate Strike movement, is on the autism spectrum.

Many high-profile politicians made fun of or belittled her because of her autism, including U.S. President Donald Trump who mocked her on Twitter, and People’s Party of Canada leader Maxime Bernier, who called her “mentally unstable,” although he later walked back on his comments.

This is typical of how autistic people are belittled and infantalized, McCulligh said.
“Our ‘disability’ is used against us to discredit us,” Ly said.

Autistics United members don’t think there isn’t enough representation of autistic people in leadership positions at Autism Speaks Canada.

Sarah Ahmed, director of marketing and communications with Autism Speaks, however, said that the voice of autistic people is “heard throughout the organization via employees and volunteer positions.”

Autism Speaks is a sponsor of PAFN, having given $500,000 toward the capital costs of the building.

PAFN board chair and interim CEO Sergio Cocchia said, when the centre was created, they brought together a group of self-advocates who are “intricately involved in every aspect of what we do. We specifically created a group during the construction of our building, called Voices of Autism, to inform our policies and programs moving forward,” Cocchia said. They also draw on parents of autistic people who can’t self-advocate.
However, McCulligh and Ly said they would rather autistic people spoke for themselves, “autistic-led but ally-supported.”

Ahmed said that Autism Speaks understands many people disagree with their mission, but they listen and learn from the autism community; however, she added, some concerns are “outdated.”

“We are proud of our work and we welcome an ongoing conversation to help address these misconceptions head-on,” Ahmed continued. “We are happy to talk to protesters and tell them about our work.”


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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


huescorporation
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04 Oct 2019, 3:03 am

Wow!



Mona Pereth
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07 Oct 2019, 6:50 pm

ASPartOfMe wrote:

First time I've heard of the following organization:

Quote:
McCulligh and Vivian Ly are the Vancouver chapter leaders of Autistics United, a self-advocacy organization with five chapters across Canada that work to improve the lives of autistic people.

Does anyone here know anything more about Autistics United?


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ASPartOfMe
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08 Oct 2019, 1:49 am

Autistic people march for and against walk for autism in Richmond - Vancouver Sun

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Vivian Ly and others in the autistic community don’t need a national autism charity to speak for them. They already have voices and deserve to be listened to.

Those were among the messages Ly and other members of Autistics United had for those who came out for an annual walk hosted in Richmond on Sunday by Autism Speaks Canada, a non-profit that Ly’s group says does not represent their interests.

Scores of families attended the walk to help fundraise for the national organization, which provides resources, programming and services for autistic people and their families, and that supports autism research. The walk raised nearly $50,000, and over the years the organization has raised about $10 million for research and $5 million for family services, according to its website.

But during the walk, members of Autistics United stood on the sidelines, holding signs that read “Acceptance, not cure,” “Disability rights are human rights,” and “Autistics are speaking. Listen.” They handed out pamphlets and shared some of their concerns with some of the people who participated in the walk.

Autism Speaks Canada did not respond to a request for comment Sunday.

Ly rejected what they termed a “deficit model” that assumed “there’s something missing in us,” and said they wanted to see the Autism Speaks logo, a puzzle piece, changed. Puzzle pieces have long been used as a symbol for autism, but there is controversy around its use because of problematic ways it could be interpreted.

They also found fault with Autism Speaks’ support for genetic research. The group has helped identify scores of genetic variations that affect autism risk, according to its website. “While that may help with an understanding about autism, there’s a huge concern about this being a slippery slope to eugenics,” Ly said.

Rather than seeking a cure for or cause of autism, there are people who could use support right now to help them thrive autistically, Ly said. As one sign put it, “Finding a gene won’t find me a job.”

Several members of the group said they did not support Applied Behaviour Analysis, a form of therapy that, as Autism Speaks Canada states on its website, has been “widely recognized as a safe and effective treatment for autism.”

Ly characterized ABA as camouflaging intended to make autistic people indistinguishable from their peers. As Sam McCulligh, another member of the group put it, ABA is “basically gay conversion therapy for autistic children.”

McCulligh said one of his concerns with Autism Speaks Canada is that its leadership positions are not held by openly autistic people. In contrast, all leadership positions at Autistics United are held by people with autism.

Brayden Walterhouse said people often try to get autistic people to match society “rather than respecting our right to be different.

“They need to show love and respect for everybody and not so much of a focus on a cure to change who we are,” Walterhouse, who is deaf, said through a translator.

Breanna Himmelright said she was diagnosed with autism at two.

“I spent 16 years learning how to talk, learning how to take care of myself, learning how to more or less pass, but unfortunately I never really got a chance to figure out who I am. So much of the focus was on making me appear normal. I’m more or less here to speak up and say hey, this isn’t something to be ashamed of. I’m autistic. I’m very proud of who I am. And I hope other people can be too,” she said.

Himmelright said she wanted people to know that Autism Speaks wasn’t the only place to turn to for information. “If they want to understand their autistic kids, just talk to an autistic adult. We’re here, we’re more than happy to talk to you about our experiences. Just listen.”


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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