Tag: ABA

Freedom to stim, under attack. What do we do? Act up, write back

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Sometimes people send emails asking us to promote their products/services or give opinions about them. And some of these products and services are clearly problematic or even abusive for autistic people.

We recently got an email from a scientist seeking to create a technology they hoped to license to Apple Watch that would monitor an autistic person’s stims–the rhythmic movements we make when we need to regulate our emotions—and alert about the person’s stims. They then seek to develop ‘a whole set of wearable devices to capture all aspects/features of [stimming] in ASD in near future.”

While the scientist claimed that the product would be “supporting the autistic community with a technology to promote Self-Advocacy,” this technology does not support self-advocacy at all. It supports the absolute friggin’ panopticon of the ABA industry, which seeks to license new and crueler tools to monitor, grade and punish autistic people—especially those who are intellectually disabled—for our natural ways of being.

But here’s the really interesting part: the scientist identified as autistic. So, we wrote back.

“Thank you for your email. Autistics for Autistics does not support ABA in any way, shape or form and cannot endorse your research that enables ABA and its harmful impacts on autistic people.

“Monitoring gadgets like this only enrich the developers and licensers without providing something of value to the end users. They end up being forced on autistic people who are not given the opportunity to say no and that is unethical.

“It is our hope that autistic researchers consider their own quality of life as they go down the research path, think about what services and products or social research could meaningfully improve the quality of life for autistic individuals and focus on that, because that is rewarding work. You are young and still have time to shift your path in that direction.”

As to the scientist’s aspirations that AppleWatch would ever pick up such an application, we’d invite anyone who finds that plausible to look at the autistic apps supported by  Apple, including Proloquo, GoTalk, Keeble and Time Timer. Or travel to Cupertino and watch the developers there, pacing and fidgeting and stimming their way to a new suite of amazing applications and products that legit do improve quality of life.

We have the right to stim, to move in the ways we need to move to regulate our bodies and emotions. Nobody should be monitoring, stigmatizing or shaming us for it. Join us each year on September 17 for our online event, the International Day of the Stim. 😊

 

 

Election 2022: Ontario NDP’s autism disinformation campaign

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Image 1. Source: Chris Bonello, online survey of 11,000+, including 7,491 autistics, published 2022

From a leaked memo by the Ontario NDP leadership to its candidates, May 2022:

“We fully support ABA and IBI therapies for people that choose that. We know there’s a small group that opposes them. We use person-first language and say ‘people with autism,’ we do not use the word ‘autistic.’ We know there are people who disagree with that; the majority of people with autism and their families prefer person-first language.” [emphasis added]

It is election season in Ontario–and according to the above memo and others, Ontario’s New Democratic Party is strong-arming its candidates to spread disinformation about ABA, a controversial autism therapy developed by a creator of a popular gay conversion therapy.

Quick fact checks: Despite the NDP’s claim that only “a small group” opposes ABA, a recent survey of more than 7,000 autistic people found that less than 4 percent of autistic people support ABA. (See Image 1, above.) And although the NDP claims “a majority” prefer the term person with autism, a full 91 percent of autistics polled use the term “autistic” to describe themselves. (See Image 2, below.)

Ontario’s NDP: In the pocket of the ABA lobby

The NDP is misrepresenting our community not because their leadership is ignorant about autistic people. Rather, the NDP’s autism talking points are part of a calculated disinformation campaign that seeks to re-establish ABA dominance in provincial autism funding.

In one of several memos leaked to us by fed-up party members, NDP’s executive team instructed candidates to advocate for the removal of all funding caps on ABA and to claim that such a dangerous policy would be preferred by “people with autism.” Here the NDP is trying (and failing) to discredit autistic groups through rhetoric–criticizing our community’s preferred ways of referring to ourselves to make autistic adults seem like “outsiders” in the policy discussion.

The NDP’s executive team also told candidates to claim that “important developmental windows closed for thousands of children” when the current Government put reasonable funding caps on ABA centres in order to newly allow funding for AAC, speech therapy and occupational therapy–choices that Ontario families overwhelmingly wanted. According to the NDP talking points, the only way to help kids is through a service monopoly by the ABA industry.

“Some children’s developmental potential is slipping away,” the NDP document claims, stating that caps on ABA therapy hours could mean: “opportunity [for children] to develop the ability communicate how they feel, or to stop self-harming behaviour, will be lost forever.” The industry’s persuasive technique goes back to the rhetoric of ABA’s founder, O Ivor Lovaas, a master manipulator who claimed in 1974 that children would have to be chained to beds unless he tortured them with “aversives” that including electroshocking, slapping and denying food and water to them. 

The ABA lobby in Ontario

At first glance, it is surprising that the NDP, a typically progressive party, supports ABA and IBI (the intensive form of ABA). Many centres are operated by private equity firms selling privately-managed “care” at an exorbitant cost. These segregated settings are known for human rights violations against the most vulnerable: developmentally disabled children, many of whom are Black, Indigenous and children of colour. ABA and IBI centres fall within a spectrum of private-equity brokered partnerships that include overcrowded, violent group homes and the disease-and-neglect-ridden long term care facilities that are the shame of our province.

But money talks. In Ontario, the IBI/ABA industry is a powerful interest group that has used its persuasive powers (including a contract with the Bay Street lobbying firm Pathway Group) to sell MPPs on the pork-barrel benefits of supporting IBI/ABA centres–which segregate autistic and intellectually disabled children from their peers–in their districts. The Ontario NDP’s vested interests are reflected in its talking points, which for years have shown stalwart support for cutting funds to occupational therapy, AAC and speech therapy in favour of an ABA monopoly in our province.

The ABA industry claims itself to be the “only evidence-based” way to help autistic children. That claim is patently false and deeply offensive. Autistic children deserve kindness and acceptance–not cruel behaviourist pseudoscience.

Autistic advocates: Fighting for policy reform

In Ontario, autistic and/or developmentally disabled children and their families were the victims of the ABA monopoly for years. In fact, from 2003 until 2018, ABA was the only publicly-funded autism therapy in Ontario, with parents paying out of pocket for speech and occupational therapies, as well as AAC systems for non-speakers and newer approaches like relational development therapy (RDI). Both the Liberals and the NDP supported the continued de-funding of these choices, forcing families to pay tens of thousands of dollars out of pocket for proven supports and therapies.

Autistic individuals and groups have met with Ontario NDP representatives over the years and provided clear documentation supporting AAC, speech and occupational therapies, as well as documentation that ABA is not an evidence-based approach. There is also a party group (Neurodivergent NDP) with autistic members. The NDP’s embattled Disability Coalition also has neurodivergent members.

Some in these groups have faced harassment by the ABA lobby; others have reported being treated unfairly by provincial NDP leadership. Many of our members have expressed that although they support the NDP’s views on other issues, they cannot in good conscience vote for a party that collaborates with the ABA industry and remains so unwelcoming to autistic voices.

When autistic people have shared our concerns about autism policy with NDP representatives, we’ve often had to listen to statements like “most children want ABA,” “you can only speak about adults’ rights.”

As systems thinkers, we know these messages are attempts by the party to regain control of the autism policy narrative. The NDP has chosen to ignore the broader conversations in policy circles on neurodiversity, equity and consultation–but they do so at their own peril. The fact is the neurodiversity movement now has a place in policy–and we’re here to stay.

Change is coming–despite the ABA lobby

In 2018 and 2019, our organization met with every provincial party at Queen’s Park. We were invited by a Liberal MPP, Michael Coteau, to attend the reading of Bill 160, which called for an end to abusive restraints and seclusion in Ontario schools (a crucial bill, currently stalled, that NDP has not supported). We also met with Green Party leader Mike Schreiner, who was supportive and inquisitive about our autism policy ideas. We met with Progressive Conservative MPPs to talk about broadening the scope of autism services to allow more choice. The Government delivered a more equitable autism services program—despite the NDP opposing it.

While other provincial parties are broadening their visions of autism policy, the Ontario NDP has decided to fall back on an old playbook, describing ABA as a saviour to families and portraying the neurodiversity movement (which is worldwide) as if it were a small cadre of local cranks. But the truth will prevail. Party members are never as loyal as their leadership would like—and they grow weary of being ordered to lie. There is neither peace nor unity in the Ontario NDP, nor is there transparency. This does not bode well for the party in the upcoming election.

Image 2

Source: Chris Bonello, online survey of 11,000+, including 7,491 autistics, published 2022

 

Note: Autistics for Autistics is a non-partisan group. We work with individual politicians in the interest of human rights for autistic children and adults. Likewise, we also speak out against any politician or party that opposes disability rights and equitable services for autistic people.

 

 

 

Autistics advocates unite to stop 11 Alive TV’s unethical use of “meltdown videos”

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December 10, 2021. Autistics for Autistics and other disability advocacy groups and individuals were shocked to see that 11Alive, a news station in Atlanta, broadcast intimate footage of disabled children at their most vulnerable and emotional–crying and in agony–without their consent.

11 Alive’s broadcasting of these moments (meltdown videos) goes against established journalistic ethics. Other news stations, as well as YouTube, have committed to stopping “meltdown videos” based on minors’ privacy concerns and the dehumanizing nature of the videos. Yet 11 Alive did not respond when advocates reached out to the station on social media—nor to a petition, which garnered hundreds of signatures within hours.

“For some reason, 11Alive has not responded to the concerns of disabled viewers,” says Anne Borden King, a co-founder of Autistics for Autistics. “Instead of learning from a marginalized community, they have ignored the community. It is shocking.”

It is not too late for 11Alive to do the right thing. 11Alive News Director Jennifer Rigby (on Twitter @jorigby) has the power to take the footage down right now—and to reach out to the autistic community to learn about why it was wrong to broadcast it. Reporter Rebecca Lindstrom (on Twitter @LindstromNews) has a responsibility to the community to respond to our concerns as well.

Below is a letter to Ms. Lindstrom from Ira Eidle. Ira is a Georgia-based archivist and founder of Autistic Archive. Ira participated in ASAN’s Autism Campus Inclusion program in 2020 and formed a neurodiversity student organization before launching the Autistic Archive.

—

To: Rebecca Lindstrom, RLindstrom@11alive.com

Greetings,

I am writing to you as an autistic person who lives in Metro Atlanta. I watched the story about autism insurance laws, particularly Ava’s Law, and have some concerns. I am concerned by the portrayal of autistic people as emotionally disturbed people in need of fixing with Applied Behavior Analysis, which is a method many autistic people are opposed to for its focus on compliance and fixing outward behaviors when autism is not a behavioral issue.

My main concern, however, is the decision to include footage of autistic people having meltdowns as a way of justifying insurance mandates for ABA. Publicly broadcasting autistic people in some of their most vulnerable moments is not only dehumanizing, but is a violation of our privacy. I ask that you do whatever you can to remove the footage from the report. Hundreds of people are asking you to do so [Link to the petition here].

I understand that you were doing your job and perhaps were not expecting this kind of reaction. However, that is what happens when you fail to meaningfully include autistic people in the development of stories about autistic people. We are asking you to do better. You are journalists for a reputable news station for the city of Atlanta, and with that comes the responsibility of journalistic integrity. When you fail to uphold what you are tasked with, you should expect to be held accountable for it.

Even though I am being critical of you and your station for a story you produced, I am also willing to collaborate on a new story that is more accurate and one that involves the input of autistic people about appropriate services that receive less funding from insurance than ABA. I hope you enjoy your holidays and am willing to discuss this further.

Take care,

Ira Eidle

We support the NDP’s Kemal Ahmed: Harassment against Mr. Ahmed and his campaign team is racist, ableist and anti-democratic

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August 25, 2021. When New Democratic Party candidate Kemal Ahmed posted on social media about Applied Behaviour Analysis (ABA), he could not have expected the onslaught of harassing responses from members of ABA-based interest groups—nor that they would be demanding he be removed as a candidate from speaking engagements on his roster.

Ahmed, a member of Neurodivergent NDP, expressed a concern that is shared by nearly all autistic people in Canada: that families and individuals deserve other options rather than the current ABA-dominated funding model for autism services.

He tweeted: “As someone who is a neurodiverse candidate, I’m used to people speaking on my behalf, but I put my foot down when I see the $multi-billion dollar ABA lobby in action advocating to traumatize children.”

For this comment–a view Mr. Ahmed has the right to hold–members of the ABA lobby are demanding the Government stop Mr. Ahmed from speaking at upcoming events such as a panel at the Toronto District School Board and have threatened “a full court press” against the candidate for “connections with a hate group” (which is how they describe the neurodiversity movement). They also called for his removal from the party, harkening the long, racist history of blackballing and intimidating BIPOC candidates in Canadian politics. (1)

ABA: what autistic people think

Ahmed’s statement reflects the views of Neurodiverse NDP as well as both of Canada’s national autistic self-advocacy organizations (Autistics for Autistics and Autistics United Canada), which represent thousands of autistic Canadians. In fact, consistently more than 90 percent of autistic people do not support ABA, which was developed in the 1970s by some of the same people who developed gay conversion therapy, a practice banned on children in Ontario.

The founder of both ABA and “feminine boy” conversion therapy for gay and trans children, Ole Ivar Lovaas referred to autistic children as “not human” and used electroshocks to prod children into compliance according to the whims of the so-called therapists. Some of his patients, whom he “treated” with Dr. George Rekers, committed suicide.

But ABA’s use of electroshock torture is not a thing of the past. A major ABA centre in the US (the Judge Rotenberg Center) forces its autistic and intellectually disabled patients to wear shock devices that electrocute them when they “break rules,” including not smiling, not making eye contact or refusing to take off their jackets.

Despite a ban by the US FDA, the Rotenberg Center continues to use these shock devices—and is fully supported by the international association of ABA providers (ABAI), who even featured the Judge Rotenberg Center and praised its practices at its 2019, 2020 and 2021 conferences. In fact, there is no professional association of ABA providers that has ever spoken out against the use of shock torture. In our view, this endorsement makes it clear what ABA is all about—compliance at any cost.

“We are not anti-supports and neither is Kemal Ahmed, who made his stance on therapies and supports quite clear as well,” says Taryn Hamlyn of Autistics for Autistics. “We are asking for supports that are respectful and have a focus on human rights and dignity of autistic and other developmentally disabled folks.”

Harassment on social media

Although autistic Canadians from a range of regions and groups were quick to support Ahmed’s statements, the ABA lobby and its proxies reacted swiftly on social media with a barrage of inarticulate rage-tweets that, by all accounts, were exhausting to read or respond to.

Amidst the bombast from the lobby: a call to the provincial government to have Mr. Ahmed banned from speaking at an upcoming Toronto District School Board event, calls for party leader Jagmeet Singh to expel him and random exhortations for the Ontario government to censure him in this, a federal election.   [……….]

The Board of Autistics for Autistics are deeply concerned that it is mostly white parents harassing a visible minority running for office and that these bullies are seeking to silence the candidate by strong-arming the government and his party. A4A’s members remember well how ABA lobbyists have harassed our members —especially our BIPOC Board leaders and members— in the past.

“Like with other areas of disability activism, autistic advocates are routinely shut down and attacked for trying to share their views,” says Kohenet Talia Johnson, a co-founder and board member of Autistics for Autistics: “It’s like there is no right for autistics to be heard if they do not follow the orthodoxy of ABA as the end-all and be-all of support for autistic people.”

Policy Consultations

Recently, Autistics for Autistics, together with Autistics United Canada, consulted with the Canadian Academy of Health Sciences on its review of federal autism policy. Among our groups’ policy recommendations: give autistic-led organizations a place at the table when the Government makes decisions about autism policy. Another recommendation: de-fund ABA.

In addition, Autistics for Autistics has met with the Ontario Provincial Government, the United Nations, the Professional Standards Authority (UK) and others about inclusion and best practices for autism policy. Our positions on housing, employment, communication rights for non-speaking autistics, education, health care access and government decision-making can be found on our Policy page, which presents clear and science-based alternatives to ABA.

“Just because a therapy has been used for a long time doesn’t mean it is a good therapy,” added co-founder Anne Borden King. “This is especially true with autism therapies like ABA, which were founded on cruelty and ignorance.”

Party support is crucial

It is now several days after the problem emerged and only two NDP ridings have publicly supported Mr. Ahmed’s right to speak at his campaign stops. Autistic Canadians are wondering: where is the rest of the party?

“The ABA industry says that without ABA, kids will fail. That is a myth that preys on caretakers and politicians to uncritically support ABA,” notes Hamlyn. “People fear being shouted down and demonized for their legitimate critiques of ABA and we can see how this is happening here.”

The federal and provincial NDP need to support the candidate’s right to speak and work without harassment from interest groups seeking to intimidate him from being active in the community. Social justice extends to everyone, including neurodivergent people.

We are waiting for action from the NDP.

(1) Media: Please contact us for citable screenshots; we do not want to platform them by posting here.

Community Partnerships: We Can’t ‘Agree to Disagree’ about ABA

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Trigger warning: One hyperlink (when clicked) includes photos of abuse of autistic people. It is flagged with a TW.

_____
As an autistic-led organization, we share space and conversation with many groups and individuals who have different perspectives than us. Often, there is much that we can learn from each other.

However, we will not share space with organizations whose belief systems are fundamentally based on dehumanizing autistic and developmentally disabled people. One of those systems is Applied Behaviour Analysis or ABA.

So when we were asked to be a community partner at the  2021 Reel Abilities Film Fest, we were at first honoured—then shocked and upset to see that an organization that supports ABA, Autism Ontario, was added as a co-sponsor. Autistics for Autistics has withdrawn its sponsorship and the two autistic speakers have withdrawn from the panel.

Reel Abilities is an important festival with quality films and they had good intentions in contacting our organizations. But like many groups, they don’t understand the degree that ABA and the medical model of autism have caused trauma, pain and death to autistic/intellectually disabled people. We would like to take this moment to educate the broader disability community about how ABA abuses and dehumanizes autistic children and adults.

ABA: Then and Now
ABA was invented by a man who also founded a form of gay conversion therapy (gay conversion therapy is illegal in Canada). O. Ivor Lovaas, the founder of ABA, was also the founder of The Feminine Boy Project, on which many current gay conversion therapies are still based. Lovaas, who is still celebrated in the ABA industry, had this to say about us: “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense.” [TW on following hyperlink: photos of abuse] Lovaas abused his patients, advocating harsh aversive techniques such as hitting, withholding physical touch and attention, isolation, and giving electric shock therapy in a shock room, where the floor was inlaid with metallic strips.

While it might be tempting to think of Lovaas’ treatments as a “thing of the past,” they are not. An ABA school in Massachusetts, the Judge Rotenberg Center, has been under fire from the US FDA—as well as Amnesty International—for shocking children repeatedly. At least six residents have died at the centre.  After one boy was shocked 18 times for not taking his coat off “on time”, the FDA stepped in and banned the practice in 2020 after years of issuing warning letters. However, that has not stopped the ABA industry from promoting the Judge Rotenberg Center’s shock torture “aversives”.

In fact, at the 2019, 2020 and 2021 annual conferences of the American Institute of Behaviour Analysis, the Judge Rotenberg Center was a featured presenter, including presentations on their legal battles in favour of continuing shock torture. No ABA professional association has ever spoken against the practice.

ABA in Ontario
In Ontario, autistic children are held in prone restraint, locked in closets and denied food and beloved objects as part of ABA programs. They are treated as broken versions of “normal” to be fixed rather than as human beings deserving of respect and care. Autism Ontario has never spoken against ABA; in fact, it leads ABA workshops, hosts ABA seminars and even lobbies the government for increased funding for ABA. With all of the problems with ABA–including the rather significant fact that it was debunked by the field of psychology 40 years ago–one would think that “autism” charities and societies such as Autism Ontario and Autism Canada would distance themselves from the practice of ABA. Yet both continue to endorse it.

Why? Because their organizations make money from partnerships with the ABA industry. It seems like making money is more important to them than doing what they know is right and cutting ties with the ABA industry.

There is no gray area—no “agreeing to disagree” when it comes to ABA. Its many abuses have been well-documented (see the hyperlinks here and here, for example). For this reason, more than 90 percent of autistic people polled do not support ABA.

Disability organizations and other community groups: Please learn about ABA. Ask when you seek sponsor groups whether they support ABA. Consider how triggering it is for autistic people to be asked to partner with groups that believe we are sub-human. Support autistic people by boycotting ABA organizations.

For too long, autistic people have been asked to share space with oppressive organizations to “tell our story” or act as tokens, suppressing our own pain and PTSD to do so. We’re not doing that anymore. We have our own organizations, working for human rights. It is time for the old “autism” groups to step down and make way for groups that centre human rights and autistic acceptance.

Looking Ahead
If you are a festival-goer and you have tickets to Reel Abilities, we hope you can attend and enjoy the screenings of these great films! We also hope this experience can be a learning moment for Reel Abilities and other programmers.

–The Executive Board of Autistics for Autistics, Ontario (A4A)
and Taryn Jaye, A4A member