KJIPUKTUK (Halifax) – I have often discussed how the provincial government can do a better job of bringing resources from actually autistic people into the classroom. Today I will explore this in more detail.

Specifically, I want to take a look at the P-12 Education section of Autism Nova Scotia’s Choosing Now report.  Released in April 2017, it identifies various areas where autistic people need more support throughout their lives.

I will review three main ideas: what “autism-specific knowledge and skills” really means; appropriate resources for “autism consultants” to have; and what an “autism centre of excellence” should look like. The main goal of the report’s P-12 education section is inclusion, and inclusion benefits all students, neurodivergent or not.

Autism-specific knowledge and skills

One issue raised by the report is: “Overall knowledge of ASD within School Boards (and individual schools) is well below optimal, even among more highly trained support staff and new teachers entering the system.”

Many autistic people, myself included, would agree 100%. To address this issue, recommendation number 13 reads as follows:

“Ensure that education professionals and support workers have strong autism-specific knowledge and skills that optimize learning for all students with ASD in the school system.”

Sounds good on the face of it, but what exactly does “autism-specific knowledge and skills” mean? The report does not include a working definition of this.  

At this time autism-specific knowledge and skills are typically developed and sourced from non-autistic professionals. Autistic people are significantly impacted by policy and program decisions made for and about them, but they are often under-represented directly in those decision making processes. Autistic people are key stakeholders whose lived experience can have a substantial influence on what constitutes autism-specific knowledge

It’s not just the anecdotal accounts of numerous autistic people, although those are certainly helpful. There are also resources created by autistic people that are rooted in decades of lived experience and inspired by numerous autistic people who have worked to inform non-autistic parents and professionals.

Resources for individuals, families, and autism consultants

Choosing Now points out that all school boards (or Regional Centres of Education) have staff to support autistic children’s learning and development, such as autism consultants or specialists, school psychologists, speech-language pathologists, and special education consultants. But it also acknowledges that they face critical staffing shortages in those same positions.

Since the report’s publication, the government has hired some more inclusive education staff, but much more is needed.

It is important that the resources these people have access to are sourced primarily from actually autistic and other neurodivergent people and informed by the ideas of disability justice, autism acceptance, and the neurodiversity paradigm.

So what would be some good resources to have?

For starters, they could access anything and everything from Foundations for Divergent Minds (FDM), which I have written about before. 

See also: For autistic children government programs aren’t the only option

FDM offers a six-lesson training course for parents, which provides practical guidance on how they can set up their home to meet their neurodivergent children’s needs in terms of sensory integration, executive functioning, communication, social interaction and emotional regulation.  

FDM also has a 12-lesson course for professionals such as teachers, therapists and counselors, which encourages them to think differently about how to support neurodivergent children. The course includes discussions on disability history, the neurodiversity paradigm, autistic traits, and goals toward self-advocacy and self-determination. Both courses include a video for each lesson, a discussion question and required assignments to complete on a weekly schedule. The training courses are not free, but payment plans and scholarship options are available.

In addition, FDM is currently exploring the development of a “Reimagined Home Kit”.  They plan to include with the kit sensory tools, routine cards, basic communication cards, social interaction bracelets and emotion cards, all to support autistic and other neurodivergent children at home, at school and in the community.  

Another excellent resource is United for Communication Choice. This is a grassroots volunteer group organized by disabled people and their families to support the rights of disabled people to choose the methods of communication that work best for them.  Resources available on their website include numerous peer-reviewed research articles, videos of people learning to communicate with alternative methods, and award-winning documentaries.

Foundations for Divergent Minds and United for Communication Choice are two of the best resources that utilize a neurodiversity paradigm-informed approach that honours the uniqueness of the lived experience of autistic and other disabled people.

Autism centres of excellence

Recommendation number 17 of the Choosing Now report reads as follows:

“Develop autism education ‘centres of excellence’ with highly-trained teachers and professional support staff who consider the unique and complex learning needs of students with ASD in each school board. This also represents an opportunity for ongoing training and professional development of education professionals who can then transfer knowledge and skills to all learning environments, further maximizing outcomes for all students with ASD and other special needs. This is also a cost-effective approach to educating and training skilled professionals.”

Each chapter of Autism Nova Scotia has something similar already, in the form of Autism Resource Centres, and it is a good first step. 

There is one model that is regarded by many autistic people and professionals as the most optimal model for an “autism education centre of excellence”.

That model is the neurodiversity library model.

The neurodiversity library model provides books, resources and information on autism from a neurodiversity and disability rights perspective, including the uniqueness of autistic culture. These libraries carry books on a variety of topics, including self-advocacy, identity and diagnosis; poetry and fiction; inclusion, education and classroom support; disability history; children’s books; and many other topics. They also carry films, colouring pages, stim toys, and information sheets and flyers.

What sets these libraries apart from most public libraries is that many of the books they carry are not usually carried by public libraries or bookstores. Importantly, the majority of materials available at a neurodiversity library are either developed by or significantly influenced by actually autistic people. This is an important distinction, as most books about autism available at public libraries are written by non-autistic parents or professionals. Furthermore, many books available at public libraries that are written by autistic people don’t always have a grasp of disability justice or autistic culture.

The first neurodiversity library, the Ed Wiley Autism Acceptance Lending Library, was started in Stanwood & Camano Island, Washington in 2014.  Since then, several other similar libraries have formed across the United States, using the Ed Wiley Library’s model.

A few similar libraries have formed in Canada, as well. These include the What About Us Neurodiversity Library in London, Ontario, run by London Autistics Standing Together; a Neurodiversity Library in Vancouver run by the local chapter of Autistics United Canada, and a new library in Toronto run by A4A Ontario.

What all these libraries have in common is, they are run entirely by actually autistic people. In addition to the materials available at these libraries, the autistic people who run them are valuable resources in their own right. These elements are what makes these libraries true “autism education centres of excellence”, even if they don’t call themselves that.

So what could Nova Scotia do?

As a starting point, the various Regional Centres of Education could acquire some materials that the neurodiversity libraries carry. They could also avail themselves of educational resources such as Foundations for Divergent Minds and United for Communication Choice.

In addition, the Regional Centres of Education are encouraged to contact the existing neurodiversity libraries to learn how they’re set up to support autistic and other neurodivergent people. Most importantly, autistic-run organizations would gladly welcome the opportunity to be engaged and provide feedback, as autistic people are the number-one stakeholder when it comes to autism-related issues.

Everybody wants an inclusive environment for all children to be supported and successful in school. By meaningfully engaging those who are under-represented and marginalized, it will be much easier to achieve full inclusion.

Alex Kronstein is the founder of Autistics United Nova Scotia, the local chapter of Autistics United Canada, a grassroots organization committed to raising the voices of Autistic people.   He is also the host of the podcast The NeurodiveCast, and is a documentary filmmaker with several films currently in development.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

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UPDATE – March 26, 2020: Ice Breakers is now available for viewing on the National Film Board of Canada’s YouTube channel and official website

KJIPUKTUK (Halifax) – At this summer’s 2019 FIN Atlantic International Film Festival, three new shorts were screened that were part of the National Film Board of Canada’s Re-Imagining Nova Scotia series.

Filmmaker Alex Kronstein went to see all three of them, and here is his review of Ice breakers, directed by Sandi Rankaduwa, about a rising teen hockey star from Cole Harbour who is Black and dreams of playing in the NHL.

Ice Breakers is about Josh Crooks, a rising teen hockey star from Cole Harbour who dreams of playing in the NHL.  It is no secret that there are very few Black hockey players in the professional leagues, and as Josh himself mentions in the film, he is the only Black kid he’s aware of who plays hockey.  Yet he is an elite player who can play at high levels.

Through hockey coach Lee Francis, Josh – and the audience – learn about the history of the Coloured Hockey League of the Maritimes, which lasted from 1895 until 1930.  This league pioneered many aspects of hockey that the white leagues did not, such as goalies being allowed to make saves, and inventing the slapshot (the slapshot was not invented in the NHL!).

In a particularly powerful moment, Josh and his father John visit the Nova Scotia Sport Hall of Fame, where they soon discover that there appears to be absolutely nothing there on the Coloured Hockey League.  That is, until they notice a single picture of one of the league’s teams hidden among the other displays, to the point where it would be easy to miss.

Josh also discovers that his great-great-great-uncle was an all-star player in the Coloured Hockey League.  He later plays in the annual Black Ice Society commemorative game.Ultimately, Ice Breakers shows us that many of hockey’s foundational pillars are not white, and shows that athletes of colour are a major part of hockey’s legacy.

See also: Alex Kronstein reviews I am Skylar

Alex Kronstein is the founder of Autistics United Nova Scotia, the local chapter of Autistics United Canada, a grassroots organization committed to raising the voices of Autistic people.   He is also the host of the podcast The NeurodiveCast, and is a documentary filmmaker with several films currently in development.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

Subscribe to the Nova Scotia Advocate weekly digest and never miss an article again. It’s free!

The post Alex Kronstein reviews Ice breakers, a short documentary about Black hockey players then and now appeared first on Nova Scotia Advocate.

KJIPUKTUK (Halifax) – At the 2019 FIN Atlantic International Film Festival, three new shorts were screened that were part of the National Film Board of Canada’s Re-Imagining Nova Scotia series.

Alex Kronstein went to see all three of them, and here is his review of Gunkillers, written and directed by Jason Young, about the secret work that blacksmiths John and Nancy are sometimes called upon to undertake for the RCMP.

By far the most stylized of the three Re-Imagining Nova Scotia shorts, Gun Killers takes us to the East Dover home of retired blacksmiths John and Nancy Little.

We first see John and Nancy working in their vegetable garden, as well as some interesting art creations they have produced using their blacksmithing skills.

But as night falls, they receive a secret delivery from the RCMP: a trunk full of confiscated handguns.

With stunning slow-motion cinematography and accompanied by an avant-garde soundscape of sonoristic music and voiceover re-creations of 911 calls, we watch as John and Nancy destroy the guns using their blacksmithing tools and forge.

The juxtaposition of the fairly ordinary activity of gardening with something as extraordinary as destroying illegal guns is an incredible storytelling feat. It likely was a significant factor in the film’s editor, Andrew MacCormack, winning Best Atlantic Editor at the 2019 FIN AIFF Awards.

The film closes with a powerful shot of John and Nancy posing for the camera together. Told without any interviews or narration, Gun Killers is a poetic portrait of two citizens with special skills to assist in Canada’s gun control efforts.

See also: Alex Kronstein reviews I am Skylar

Alex Kronstein is the founder of Autistics United Nova Scotia, the local chapter of Autistics United Canada, a grassroots organization committed to raising the voices of Autistic people.   He is also the host of the podcast The NeurodiveCast, and is a documentary filmmaker with several films currently in development.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

Subscribe to the Nova Scotia Advocate weekly digest and never miss an article again. It’s free!

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KJIPUKTUK (Halifax) – At the 2019 FIN Atlantic International Film Festival, three new shorts were screened that were part of the National Film Board of Canada’s Re-Imagining Nova Scotia series.

Alex Kronstein went to see all three of them, and here is his review of I Am Skylar, directed by Rachel Bower, about a young transgender woman from Cape Breton.

I Am Skylar is about 14-year-old Skylar Côté, a young transgender woman from Mira Gut, Cape Breton.

Skylar’s parents, Jill and Marcel, talk about how difficult it was at first for them to hear that their son saw himself as a girl, and how they eventually came to accept and support her for who she really is.

Skylar shares that she tries to be open about who she was in the past and to accept and acknowledge who she was without being angry about her past life.

We also meet Skylar’s younger brother Joshua, who has a rare genetic condition called hypohidrotic ectodermal dysplasia, which affects the hair, skin, teeth and nails. Jill and Marcel talk about how when Josh was diagnosed, they didn’t know what would happen next, yet that dealing with the unknown helped prepare them for what Skylar would later deal with.

Easily one of the most poignant moments is when Skylar’s family surprises her with her own float at the Sydney Pride Parade.

Ultimately, I Am Skylar inspires everyone to live authentic lives.  Skylar encourages us to accept everyone for who they truly are.

Little wonder that the film won Best Atlantic Short Documentary at the 2019 FIN AIFF Awards!

Alex Kronstein is the founder of Autistics United Nova Scotia, the local chapter of Autistics United Canada, a grassroots organization committed to raising the voices of Autistic people.   He is also the host of the podcast The NeurodiveCast, and is a documentary filmmaker with several films currently in development.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

Subscribe to the Nova Scotia Advocate weekly digest and never miss an article again. It’s free!

The post Alex Kronstein reviews I am Skylar appeared first on Nova Scotia Advocate.

KJIPUKTUK (Halifax) – In my last article I wrote about about autistics who might wander off, and why tracking devices are problematic.

See also:” Safety for autistic people: “Wandering” and why tracking devices are not the answer

Now I will address the second most commonly discussed safety issue for autistics: police interactions, and ask some questions as to how these affect Black and Indigenous autistics.

Proper training for first responders

In Autism Nova Scotia’s Choosing Now report, under the section “Safety In Communities”, it says:

“It is important that individuals with autism learn to interact with first responders, and that first responders learn about and understand ASD so that they are prepared to identify and respond safely to situations that involve this population”.

The second part of that sentence is 100% accurate.  First responders absolutely need better training for dealing with autistic people.

But to suggest that it’s equally important that autistic people need to learn how to interact with first responders places an unreasonable expectation on them. While there are certainly things that autistic people should know if they have to deal with police, it is far more important that the police understand autistic people.  

In these kinds of situations, there is often a huge power imbalance, as the police are the ones who hold all the power. It’s up to them to understand the nuances and complexities of the situation.

Autism registries

One of the most problematic proposals by far is the Autism Nova Scotia Choosing nowreport’s suggestion to look at the feasibility of implementing an autism registry, similar to the one in Ottawa.

The Ottawa Police Service launched an autism registry in 2010, containing the name, address and a photo of an autistic child, as well as any other information that would be useful for fire, police and medical personnel. The registry also included potential triggers that might set off autistic people.  

Ultimately, about 1200 people were listed with the registry. In January 2019, the registry was handed off to MedicAlert in an effort to make the information more widely available.

We need to seriously look at something that is being ignored in all these discussions

And that is that racism in police departments will likely make racialized people reluctant to participate. And who can blame them?

Autism and race:

Autistic activist Erin Human wrote an excellent piece about autism safety. She’s talking about it from an American perspective, of course, but her points can also apply to Canadian issues. When it comes to the proposed solutions for wandering and police interactions, she says:

“I think anyone who pauses for even one minute to consider how those solutions might work for a black or brown autistic person could see how deeply flawed they are.  How would a black family in America be affected by being in an autism registry or GPS service with their local police department? What is the likelihood they would sign up for this voluntarily, given the downsides? Can you imagine a black autistic parent, or a Latinx immigrant family, being willing to be on such a registry?

And where to even begin with pushing more compliance training on non-white autistics. How well has compliance worked for black Americans historically in this country, when it comes to keeping them safe in police interactions? Eric Garner said it best: I can’t breathe.”

Now, let’s consider a proposed autism registry for Nova Scotia police forces in the context of the Wortley report on police street checks. The report concluded that Black men are 9.2 times more likely to be stopped than other people.  Furthermore, as this CBC investigative piece shows Black and Indigenous people are more likely to be killed by the police in Canada.

In addition, studies show that in the United States at least 50% of people killed in police interactions were disabled, and this does not count those with mental health issues.  And Black people are nearly three times more likely than white people to be killed by the police.

The Halifax Regional Police do not contest the statistics that show how racist bias manifests in the practice of street checks, yet in spite of a recent moratorium on the practice, they don’t plan on stopping it completely any time soon. Neither HRM RCMP nor the Halifax Regional Police are planning to issue an apology.

See also: No apologies from Halifax Regional Police and RCMP for damage done by racist street checks

Why would racialized autistics want to join a registry under these circumstances?

What safety issues should we really be talking about?

There are many other safety issues autistic people face, and we urgently need more Canadian data on these issues. Autistic people have very high rates of depression, anxiety, and suicide attempts, and many autistic children are frequently bullied at school. We are also much more likely to be victims of serious crime, and are at a high risk for abuse and neglect by caregivers.

Furthermore, as A4A Ontario’s recent human rights report shows, the use of restraints and isolation rooms at schools remains a major problem, with no serious regulation of the practice or willingness to outlaw it entirely. There is also the issue of practitioners of pseudoscience, such as chelation, stem-cell treatment, bleach enemas (Miracle Mineral Solution), hyperbaric oxygen therapy, and other so-called “biomedical interventions”.

I’ll leave the last word to Erin Human:

“Many of these risks to autistic children are much more prevalent and dangerous than the risk of elopement, and many continue to affect autistic people throughout our lives – as our high rates of depression and anxiety show. And yet, these are the dangers that are rarely discussed by parents and autism organizations. These risks do not seem to inspire as many panel discussions, safety curricula, training sessions, and special safety programs. Perhaps because, by and large, they require change on the parts of everyone else but the autistic child.

Even more crucially, the parent/expert safety programs that are most popular – the GPS trackers, registries, and compliance training – actually put autistic people at greater risk to our real threats: abuse, victimization, discrimination, isolation, and psychological trauma. Trackers, registries, and compliance make us less safe. Worst of all, they will have the strongest negative effects on the segment of the autistic population that is already the most vulnerable – you know, the ones we never talk about? – those of us who are not white.”

Alex Kronstein is the founder of Autistics United Nova Scotia, the local chapter of Autistics United Canada, a grassroots organization committed to raising the voices of Autistic people.   He is also the host of the podcast The NeurodiveCast, and is a documentary filmmaker with several films currently in development.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

Subscribe to the Nova Scotia Advocate weekly digest and never miss an article again. It’s free!

The post Alex Kronstein: Autistics, police interactions, and race appeared first on Nova Scotia Advocate.

In April 2017, Autism Nova Scotia released the report “Choosing Now: Investing in Nova Scotians Living with Autism”, which identifies various areas where autistic people need more supports throughout their lives.

Some of their proposed recommendations are good, others not so much. For now I just want to look at the section which is by far the most problematic: the section on “Safety in Communities.”

Safety in Communities

The section begins as follows:

“Safe communities are accommodating and supportive communities. For families of people with ASD, a common concern may be how their loved ones will be treated as they venture into the community, and, particularly for those caring for people with more significant support needs, if authorities and first responders will know how to react to them.”

The section then focuses on what always seem to be the two most commonly discussed “safety issues” when it comes to autistic people: wandering, and police interactions.

For this piece, I want to focus on the issue of wandering, or “elopement.” I will have more to say about police interactions soon.

Wandering

As the Choosing Now report says,

“For families caring for persons with ASD who also have an intellectual disability, and/or who are non-verbal, a common concern is that their loved one may wander into the community and become lost or find themselves in dangerous situations.”

Autism NS has been collaborating with Project Lifesaver, a nonprofit that provides equipment and training for law enforcement and search & rescue organizations to help them locate neurodivergent people who have wandered off.  (They don’t use the word “neurodivergent” in any of their public information.)

Each person enrolled in this program wears a water-resistant directional radio transmitter on their wrist or ankle that emits a unique frequency. The program is funded by the Nova Scotia Emergency Management Office, part of the Department of Justice, to the tune of $278,000 per year.  Furthermore, according to the report,

“Since the inception of Project Lifesaver in this province, there have been several calls for service from families supporting people with ASD, all resulting in successful rescues.  In one case, a young girl with autism was found 2 kms from her home and close to water – a situation that could have become much more dangerous if she had not been located quickly. Project Lifesaver sees its service to the ASD community as an integral part of its work.”

On the surface, this may seem like a good idea. And if they have in fact helped locate autistic or other neurodivergent people who have wandered off, that’s a good thing. No one denies that safety is paramount.

Here’s the thing…..nobody seems to be asking why autistic children (it’s almost always children who are the focus of this discussion) wander off. Is it because of sensory overload?  Is it because they’re being abused or mistreated in some way? Or is there another reason?

If those are the reasons, then a GPS tracking device will provide little, if any, lasting solutions.

There is always a reason why autistic children wander or “elope”

If an autistic child wanders off because of sensory overload, then they should be provided with sensory integration assistance. If they are wandering off to escape mistreatment, then the best way to prevent that is obviously to deal with the person mistreating them rather than return them into to the charge of the abusive parent or caregiver.

There’s another issue at play here, regarding communication. If an autistic person has a tracking device on them at all times, the message it sends to people with inadequate knowledge of autism that they are incompetent and unreliable regarding claims of abuse.

Many neurotypicals, especially parents, tend to use issues of wandering as a scaremongering tactic, trying to separate the issues and concerns of adult autistic activists from those of so-called “severely” autistic children. This message runs counter to autism acceptance.

If not GPS tracking, then what?

As stated above, sensory integration techniques would be a good start, mainly for those who are running from sensory-unfriendly environments. ID bracelets with the autistic person’s contact info on them would also be helpful. Providing a smartphone and teaching safety and GPS map reading skills are other mechanisms.

Most of all, the neurotypical parents, professionals, law enforcement and search and rescue officials need to understand that behaviour is communication.

When we hear stories of autistic people (mostly children) wandering or eloping, neurotypical parents nearly always jump on this and talk about their own kids who are apparently a “flight risk” and try to make a case for GPS tracking.  But however helpful they may seem, it is extremely important to prevent wandering in the first place by figuring out what’s causing it to happen.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

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KJIPUKTUK (Halifax) – Have you ever been shocked with a police taser? If so, you know how painful it is. Now imagine receiving an electric shock ten times stronger than a police taser.

Well, if you have an intellectual or developmental disability or learning disability you can receive exactly this at the Judge Rotenberg Center, in Canton, Massachusetts.

The shocking history of the Judge Rotenburg Center

The Judge Rotenberg Center (JRC) is a residential institution for children and adults with intellectual and developmental disabilities (I/DD), mental health disabilities, and learning disabilities, including several autistic people. Most residents at the JRC are people of colour.

The JRC is the only place in the United States that uses electric shocks to punish disabled people.  The exact device used is called the Graduated Electronic Decelerator (GED), which children and adults are forced to wear on their bodies.  The GED can be triggered via remote control to give an electric shock to the person wearing it, and it is done as an “aversive”. This means the pain of the electric shock is used to punish people for doing certain things.

See also: Treating autism as a problem: The connection between Gay Conversion Therapy and ABA

There are two shock aversive devices used at the JRC.  The main GED delivers a 15.5-milliamp shock of up to two seconds, and the GED-4 gives shocks of 45.5 milliamps.  By comparison, most police tasers deliver shocks of 2.1 or 3.6 milliamps.

The JRC says the GED devices are needed because the residents of the center have a lot of aggressive and self-injurious behaviours.  In truth, however, residents of the JRC are often shocked for the most trivial matters. These include, but are not limited to:

• flapping their hands;
• standing up without permission;
• swearing;
• not taking off a jacket;
• making involuntary noises or movements because of their disability;
• putting their fingers in their ears;
• not answering staff quickly enough;
• asking to use the bathroom;
• raising their hands;
• saying “no”
• whispering;
• slouching;

and even

• screaming in pain while being shocked;
• attempting to remove the shock electrodes; and
• reacting in fear to others being shocked.

The electric shocks often cause blistering red spots and other burns on the skin, or make someone unable to move.  It also puts the victim at a high risk of PTSD, depression, anxiety disorders, and other mental health issues.

In 2013, the United Nations Special Rapporteur on Torture put out a report rightfully calling the use of the GED “torture.” Then, after a hearing on April 24, 2014, the US Food and Drug Administration (FDA) put out a report asking that the GED be banned completely.  The FDA found that the devices are unsafe, cause serious harm, and do not help the people they’re used on in any way. In 2016, the FDA completed a rule to have the GED banned for good, but it was never enacted.

It must be noted that many disability rights activists in the States have been fighting for years to not only get the GED banned, but to have the JRC shut down.  Noted autistic activist Lydia Brown has a massive dossier of information on the JRC that can be viewed here.  Other groups that have been fighting include ADAPT, the Autistic Women & Nonbinary Network, and the Autistic Self-Advocacy Network, to name only a few.

So what’s the Nova Scotia connection?

A questionable textbook at NSCC

At the Nova Scotia Community College, there is a program called Behavioural Interventions. It is essentially an ABA diploma program. While more than a few autistic people would probably like to see this program disappear completely, that may or may not happen for a while.

One of the textbooks used in the program is “Effective Programs for Treating Autism Spectrum Disorder: Applied Behavioral Analysis Models”. Among other things, the book profiles eight ABA models across the United States. The list of programs profiled is rather curious, and not surprisingly, none of them are popular amongst autistic activists.

But chapter 13 is a profile of….you guessed it, the Judge Rotenberg Center. And it glosses over the many abuses that have taken place at the JRC for many years. It also ignores the efforts of the many, many disability rights activists who have been fighting to get the place shut down.

Now I am well aware that most post-secondary programs do not teach everything in a textbook, so maybe they don’t use that particular chapter at all in the program. Even so, the fact that it uses a textbook that includes a chapter on a place that has been condemned by the United Nations is beyond all reason. (Though it should be noted that the UN ruling came in 2013, and this book was published in 2010.)

Given everything that NSCC does to make neurodivergent and other disabled students feel welcome and to support their success, the fact that a program purportedly meant to “help” disabled people has a textbook with a profile of a treatment approach condemned as torture by the United Nations is beyond the pale.

I would strongly encourage the faculty in the Behavioural Interventions program to review the textbooks currently used, and find a more appropriate replacement.  Alternatively, if there’s no other textbook that meets their curriculum requirements, they could find a way to address this issue with their students to have a robust discussion and reflection.

Postscript

On April 24, 2019, the autistic community will hold a wait-in to urge the FDA to finalize its ban on the GED electric shock devices currently used on residents of the Judge Rotenberg Center. To find out what you can do, please contact the Autistic Self-Advocacy Network.

With a special thanks to our generous donors who make publication of the Nova Scotia Advocate possible.

Subscribe to the Nova Scotia Advocate weekly digest and never miss an article again. It’s free!

The post About electroshocks at a US institution for people with learning disabilities, and a bit of a Nova Scotia angle appeared first on Nova Scotia Advocate.

KJIPUKTUK (Halifax) – Last year, in my review of the board games Co-Opoly and Rise Up: The Game of People & Power, I opened with a description of the Antigonish Movement in Nova Scotia.  Here it is again:

In the 1920s, after several decades of hardship in the fishing, mining and agricultural sectors of eastern Nova Scotia, St. F.X. University established the Extension Department, led by Father Moses Coady.  The Extension Department would later sponsor the social and economic movement known as the Antigonish Movement.

The Antigonish Movement’s goal was to address the extreme poverty caused by the way certain coal mining and fishing companies exploited their workers.

The movement focused first of all on adult education in order to teach people in rural communities how to become self-reliant so they wouldn’t have to keep relying on big corporate money.  Well over 1000 study clubs with some 10,000 participants altogether were formed, where members would learn about the factors that kept them in poverty and how to build their own self-sufficient local institutions.

The movement organized cooperative fish plants and lobster canneries, cooperative grocery stores, housing cooperatives, and the most common cooperative institution, credit unions.  Today, Nova Scotia has over 350 cooperatives and credit unions, with combined assets of over $2.5 billion.

I strongly believe that the goals of self-reliance as outlined by the Antigonish Movement can be applied to all marginalized communities.  For the purposes of this article, I’ll discuss how they can be applied to the autistic and other disability communities, especially when they are ignored by mainstream disability organizations.

Another example: the Black Panther social programs

In the late 1960s, the Black Panther Party organized community social programs in various American cities.  These included free health clinics, youth education programs, a safety program for senior citizens, a free ambulance service, a food distribution program, clothing distribution services, and their most well-known initiative, the Free Breakfast for School Children program.

The idea here was to help Black people organize themselves together so they wouldn’t have to rely upon government systems, which were not serving the Black community well.  Many minority communities across America over the years had built similar programs to help new immigrants.

The community social programs created by the Black Panthers and the Antigonish Movement in Nova Scotia were obviously not identical.  However, they were both about communities helping each other and building resilience in the face of adversity. There are lessons to be learned from both movements.

What could autistic people do?

As anyone who has spent any time in the autistic activism community can attest, autistic people provide most of the day-to-day support for other autistics.  We work to put autistic people back together when they’ve been broken by ABA and abusive martyr parents.

We also put together care packages for our fellow autistics when they’re in the hospital for serious chronic illnesses.  Even if we live far away from each other, we purchase items to include in the package, and send it to one person who will assemble the package and then send it along.

And of course, we help fund each other’s creative projects, be they books, films, neurodiversity libraries, or other things.

But we need to do more.  So what are some ideas for building communities of mutual support for autistic and other disabled people?

One thing would be to organize a free meal program for autistic folks, with careful attention paid to any sensory issues they have with certain foods.  Ideally, it would be modeled on the community food centre concept, such as with The Stop in Toronto.  More than just a food bank, The Stop is a place where people get together to grow and cook their own food, learn how to challenge income and food insecurity, and much more.

If autistic people had a similar place to go, where they could enjoy a hot sensory-friendly meal, in a quiet sensory-friendly atmosphere, and learn how to grow and cook their own food, all in an environment where autistic people were in charge, it would be a major help to a lot of them.

Or we could organize our own clothing distribution program.  Many autistic and other disabled people have sensory issues with certain types of clothing, so having a place to go where they know they can get clothes they can tolerate would be helpful.  It can sometimes be overwhelming to root through the choices at a place like a thrift store.

One very useful idea would be a “caregiver violence shelter”.  Similar to domestic violence shelters, this would be for disabled people fleeing abusive caregiver situations, whether in their own homes or small options homes or larger facilities.  Victims of abuse could receive counselling and talk with other disabled folks who have gone through similar situations, and get information on potential legal assistance and help in finding another place to live.

Mentoring programs

But the one thing that I think would be the best idea of all…..

…..is one for the next generation of autistic people.

A mentoring program for autistic youth, as well as other disabled youth.

I am a firm believer that autistic children need autistic adults to mentor them.  And not just any autistic adults, but ones who are active participants in the autistic culture, community and resistance.

The same goes for young people with other disabilities.

Think of it as Big Brothers Big Sisters especially for autistic and disabled people.

It could be so much more than going on social outings together.  The adult mentors could teach their young mentees about neurodiversity, autistic culture, autistic and disability pride, and the shared history of the autistic and disability communities.

Because these are things that the mainstream autism organizations rarely, if ever, talk about.

But autistic and other disabled adults talk about these things all the time.

And these are things that the next generation of autistic and disabled children cannot afford to not know about.

So as you see, it is extremely important that autistic and other disabled adults continue to support each other through solidarity and mutual aid.

And it’s critical that we are able to mentor our next generation.

I’ve only listed a few ideas here.  If you have any other ideas for how autistic and other disabled people can build their own communities of mutual support, feel free to let me know.

Feedback? Leave a comment here, or email Alex Kronstein at alexkron@live.ca

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KJIPUKTUK (Halifax) – “If you’ve met one person with autism, then you’ve met one person with autism.”

Yes. That is true.

But it’s also a phrase coined by autistic people that has frequently been used against us by allistic (non-autistic) parents. That happens a lot. Let me explain.

How it got co-opted

The phrase was originally coined by autistic professor Stephen Shore to emphasize the fact that autistic people should not be lumped into one category, as so often happens.  And it’s true…..no two autistic people are the same. We all have our own personalities, strengths, weaknesses and abilities, just like every other human being on Earth!

Autistic people have said this to parents and professionals who try to shoehorn us into various therapeutic or educational boxes, which of course doesn’t work, because we’re all different.

Unfortunately, like many things autistic people say to assert themselves, the expression eventually got co-opted by the very people we were trying to educate.

Very often allistic parents talk about things like their autistic children engaging in “aggressive” behaviour, or the fact that they may not be toilet-trained yet, or, most commonly, that they are “non-verbal” and therefore unable to communicate. (Many autistic people prefer the term “non-speaking” but for the purposes of this article, that’s neither here nor there.)

When allistic parents do this, autistic people, if they feel up for it, will sometimes try to tell the parents why these things are happening. Very often, the parents will ignore and dismiss this advice with comments to the effect of “You aren’t like my child!” or “You don’t speak for my child! I am his/her voice!” or even “You must be high-functioning if you can have this conversation!”

And they also may pull the “if you’ve met one autistic….” line to try to further prove their point that the autistic person trying to explain something doesn’t know what they’re talking about.

But the truth is, autistic people are the real experts on autism. They have the lived experience of being autistic that the allistic parents simply don’t have. They have so much more in common with autistic children than their non-autistic parents ever will.  And no amount of talking to other “autism parents” will ever change that.

Autistic people – children and adults – have a lot of shared experiences and history. But allistic parents and professionals have a real tendency to think that actually autistic people should only talk about their own personal, individual experiences, and never about bigger issues that affect the wider autistic community.

Which brings me to another word that can sometimes be turned against us:

Self-advocate.

Why some autistics don’t like the term “self-advocate”

The term “self-advocate” was first coined by people with intellectual disabilities, many of whom were survivors of institutionalization. The self-advocacy movement began in Sweden in the 1960s, when people with intellectual disabilities were encouraged to form and lead their own leisure clubs. In 1968 and 1970, national conferences for the clubs’ members were held, where they prepared statements about how they wanted to be treated.

In 1972, the idea spread to the United Kingdom, Canada and the United States, and people labeled with intellectual disabilities formed self-advocacy groups in response to the control that proponents of institutionalization imposed upon them. In Oregon, a group called “People First” was formed, because they felt their disabilities were secondary to them being a person above all else.  

From there, the term spread to the autistic community and the broader disability communities. However, this term has also become weaponized against us in the last several years.

Non-autistic people, especially parents, have used this term as an excuse to demean and dismiss the work of autistic activists. It implies that we must only advocate for ourselves and nobody else. By this, I mean if someone calls me a “self-advocate”, it sounds as if I should only be advocating for my own personal needs and not those of my fellow autistics. To be clear, this is not what movements such as People First are propagating.

Of course it’s true that we cannot speak for all autistics. But when people try to minimize and silence us in this way, they are trying to stop us from standing up for the wider autistic community.

The thing is, autistic activists stand up and fight for each other all the time.  This is true for practically all marginalized groups throughout history. Very often, we do this at great personal risk. In fact, people have nearly died for this thing that we do.

As mentioned above, autistic people have a great deal of shared experiences and history.  But this is constantly being erased by allistic parents and professionals, the mainstream media, politicians, and the mainstream autism organizations.

For this reason, there are a lot of autistic folks who don’t really care for the term “self-advocate.” And it’s extremely important to understand how the term has been co-opted by people who hold more power than autistic activists do.

At the same time, there are those who do call themselves “self-advocates.”  And that’s okay….as discussed, the term has a very important and powerful history.

Remember: When autistic people demand change, it is never for ourselves and ourselves alone. It is for all our fellow autistic and disabled people, today, and all autistic and disabled people after us.

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Unfortunately Nova Scotia media do not appear to be particularly careful about how it uses that power to shape the news. When we take a look at news stories on autism we find that they are often reported in a manner that is not at all sensitive to autistic people.   

In the last few years, there have been guidelines developed for the news media on many different issues.  Some of the most prominent include mental health, suicide, and mass shootings.

There are also guidelines for reporting on disability issues from a variety of sources, and specifically, for autism.  However, I am not certain that the mainstream media in the Maritimes are aware that these guidelines exist.  

Today I’m going to focus on a few areas where the media can do a better job of reporting on autism-related matters.

Too much focus on neurotypicals

The first problem is that in practically every news story about an autistic child, reporters only ever speak to the parents, some professionals, and staffers from Autism Nova Scotia.  The examples of this are limitless, but this CBC story, this one from the Cape Breton Post and this CTV story are perfect examples.

I have never seen a single such story where an autistic adult is consulted.

Now I understand why this is so, to a certain extent.  Where young children are concerned, the parents will always have a prominent voice.

But still, autistic adults have a great deal of knowledge to contribute to these conversations that neurotypical parents and professionals can never have.

Because we have the lived experience of what it’s like to be autistic.

To use a particularly egregious example, here’s a CBC story from last January on training for the RCMP on how to deal with autistic people.

The article opens as follows: “RCMP officers on Nova Scotia’s South Shore have been struggling with how to deal with an increase in violent outbursts from people with autism spectrum disorder or ASD.”

As Ontario autistic activist Sarah Kurchak pointed out via Twitter, this may only mean the police are getting more calls about outbursts, and not that autistic people are having more outbursts.  Furthermore, as Kurchak also says, stories like this recklessly paint a picture of autistics being violent very frequently.

And of course, not a single actually autistic person was consulted for the story.

Inspiration porn

Another major issue is that when the media does a story about an actually autistic person, there are only a few types of autistic people who get covered regularly.

One extremely common tactic is when the media resorts to stories commonly known as “inspiration porn”.  Coined by the late Australian disability rights activist Stella Young, inspiration porn is when disabled people are portrayed as “inspirational” simply because of their disability.  Many disabled people say that such portrayals are highly dehumanizing, and that they do not exist simply to be inspirational to abled people.

For me, one of the worst examples of inspiration porn from media in the Maritimes is this CTV story from October 2017, about an autistic teen boy who scored his first touchdown in high school football.

Tom, the autistic boy, is not interviewed at all.  And he can speak, so there’s no excuse for the reporter to not interview him.  (And even if he was non-speaking, he could still be interviewed, if he had access to an AAC device.)

Instead, the focus of the story is on Tom’s coaches and his brother Jeffrey.  In the interviews with Jeffrey, Tom is standing right next to him, not saying anything, and Jeffrey is talking about his brother as if he isn’t even there.

Standing there like he is, he looks like a prop.

We’re certainly happy for Tom that he had this great experience, and we don’t know if any attempt was made to interview him.  Of course, maybe he didn’t want to talk on camera. But if that is so, my belief is: if the actually autistic person is unwilling to speak on camera, don’t do the story at all.

Another example of an inspiration porn-style story is this one from CBC in July 2017, about a 17-year-old autistic girl going to her high school prom.

The mother of Anne, an autistic girl, describes the various accommodations Anne required to be able to attend prom, and this is a good thing.  And everybody would certainly be happy that she had a great time at her prom. But once again, we don’t get to hear from Anne herself. As I just mentioned, maybe she didn’t want to speak on camera.  But as I’ve said, if we can’t hear from the autistic person themselves, either through AAC or oral speech, then the story really should not be done.

I understand that inspiration porn can be a very difficult concept for able-bodied, neurotypical people to grasp, especially if they work in media, but it is a major issue in the neurodiversity and broader disability rights communities.

So how do we address this?

In addition to the ideas mentioned above, the most important thing reporters can do is ask the autistic or other disabled person about any accessibility needs they may have.  If those needs are respected, then the disabled interviewee will likely be much more willing and able to open up.

There aren’t many examples of mainstream media stories on autism done well, but the best one, in my opinion, is this profile of autistic activist Amythest Schaber.  Another good example is this one about a conference in New Brunswick for autistic adults, which was co-organized by Nova Scotia’s Patricia George-Zwicker.  These stories were so much better because the autistic people who were the focus of the stories were allowed to speak, and the non-autistic ones were less prominent.

Reporters should familiarize themselves with the guidelines mentioned above, and most importantly, they need to think about why they want to do the story, and what’s really important about the story.  They must also make every effort to make the autistic person as comfortable as possible so they can participate in the interview to the extent that they are able and willing.

The important thing to remember is that there are autistic people who are more than willing to be interviewed for news stories about issues that affect their lives.  This applies even in cases where they may not be the first ones reporters think to contact when setting up interviews.

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