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Why we oppose ABA in any form

by Autistics for Autistics Ontario

Autistics for Autistics opposes ABA in any form. Some of our reasons are below, followed by background on ABA and alternatives to ABA. (Please also read the hyperlinks for more information.)

Reason 1: Autistics who have undergone ABA are 81 percent more likely to suffer from PTSD. The risk of suicidality is also significantly higher for ABA participants. Research shows that ABA is overwhelmingly traumatic and has a lifelong effect. One study linked increased exposure to ABA with increasing severity of PTSD, and the roots of PTSD were found in the first session for most study participants. There is also a correlation between ABA and suicidality according to a study by the International Society for Autism Research.

Reason 2: ABA training makes children vulnerable to abuse throughout their lifetime.
A child is not allowed to say “no” in ABA. ABA teaches compliance at any cost: children are told over and over to ignore their gut feelings and abandon their sense of personal space. Saying or expressing “no” is  punished with aversives such as taking away something the child loves. This has long-lasting psychological effects and can impact future judgement and relationships.

Reason 3: Young children who undergo IBI or ABA are denied a normal childhood.
Most centres keep toddlers and preschoolers in 25-40 hours a week of therapy at a time in their lives when they should be connecting with their families, playing outside and getting to know their peers. It is the ultimate segregation and, in effect, makes autistic preschoolers go to work every day rather than exploring their natural development as other children can.

Reason 4: Autistic people do not like or want ABA.
Autistics overwhelmingly report that their experience of ABA is negative. Autistics deserve to feel comfortable, safe and have dignity throughout their lives, including childhood and school. Unfortunately, our province does not recognize disability rights in this regard and still funds programs that force autistic people to receive a century-old “treatment” that they do not want.

Reason 5: There are better ways than ABA — but ABA professional organizations lobby for total dominance.
There is never one approach to anything, and yet ABA organizations will say theirs is the “only evidence-based practice”. It’s not. There are many wonderful accommodations and services that are left out of the funding models in places like Ontario, with tragic results. The elephant in the room is that the ABA industry wants it that way. Read our report on the Ontario situation to learn more.

History and philosophy of ABA
ABA, also know as autistic conversion therapy, is a form of Radical Behaviourism, which has its roots in the thinking of BF Skinner, who studied animal subjects in the 1930s and 1940s, using electric shocks and other aversives to control animal behaviour. ABA’s founder, O. Ivor Lovaas, did not understand autism and the myths he perpetuated still power the ABA movement.

Writing about his autistic patients, Lovaas stated: “You have a person in the physical sense –they have hair, a nose, a mouth, but they are not people in the psychological sense. One way to look at the job [of autism therapy] is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.” Sadly, in ABA literature we still often still see the idea that autism is a deviation to be fixed and a “real” child constructed through the therapy.

Countering this myth, Maxfield Sparrow writes: “Autism is not a shell surrounding a ‘normal’ child. …Autism in your child’s DNA, brain, sensory organs. Autism is so much a part of who your child is that many of us Autistic adults who are able to communicate, and who choose to talk about being Autistic, will tell you that it hurts us to hear or read phrases like ‘fight autism,’ because it feels like people want to fight us.”

Lovaas was also the founder of a brutal gay conversion program, which falsely claimed to stop young people from being gay. Gay conversion therapy is now illegal for children under age 18 in Ontario because it violates human rights. It has also been banned in many jurisdictions for adults because it violates the Charter. Similar to its founder’s gay conversion therapy method, ABA likewise attempts to convert autistics towards the goal of appearing “indistinguishable from peers” –at any cost.

The Practice of ABA
Through ABA’s early interventions, autistic children are exposed to hundreds of repetitive discrete trials, where they are forced to perform simple tasks over and over to earn rewards or –if they don’t perform– they are given aversives, which range from electric shocks and other physical punishment to psychological torture such as being isolated, having beloved objects taken away or providers refusing to address their communicated needs.

One example of physical aversives in ABA at a residential/day centre is the Judge Rotenberg Center in Massachusetts, where autistic and other disabled residents are deprived of food and given electric shocks to correct “behaviour”. While the Center has been condemned for its practices by the United Nations among others, note that none of the major professional organizations of ABA providers have condemned the actions of the Center. (For updates on the campaign to stop the use of shock aversives, visit the ADAPT website).

In Ontario, children as young as two years old are put into programs that consist of 6-8-hours per day of repetitive drills at a therapy centre – segregated from their neurotypical peers (who, unlike them, get to engage in free play and other developmentally appropriate activities.) At the end of the child’s day, ABA drills typically continue in the home because parents are told to continue the program there, essentially playing the role of therapist rather than parent. This can quickly erode trust and compromise the parent-child relationship.

Forbes science writer Emily Wilmingham points out: “With ABA, the burden is on the child to somehow understand and modify behavior in situations that they often aren’t even old enough to intellectualize.” With other approaches, “the onus is on the [parents and teachers] to understand and communicate with their child, rather than to try to ‘fix’ them.”

Why ABA doesn’t work
ABA’s impossible expectation (for the child to act the same as neurotypical peers) is a setup for failure –and failure is too often blamed on the child. Parents who start out with a standard ABA program may then be encouraged to increase the intensity of aversives; an example would be a parent who, when faced with a child in meltdown or shutdown (a response to the therapy), escalates the situation by locking their child in his room for hours on end.

Children who react naturally to the (highly unnatural) expectations and protocols of ABA are seen as “non-compliant”, resistant and burdensome to practitioners and even to some families. And then the situation escalates. As a former ABA provider writes: “The overall concept of compliance training is an integral part of many ABA programs. The rule is, once you give a command as an ABA Therapist, you must follow through with it no matter what. If a child tries to cry or escape or engage in any other ‘behaviors,'” the therapist can’t intervene to help or comfort the child.

Even if the ends could justify the means, ABA doesn’t appear to actually work. Research reviews show that ABA studies have been historically plagued by poor methodology. As neuroscientist Laurent Mottron of the University of Montreal writes in his study, ABA research’s “efficacy has been called into question in the last decade due to poor-quality data, small effects, low cost-efficiency, and the evolution of ethical and societal standards.” Newer research in the neuroscience field is incompatible with the Behaviourist approach.

The Politics of ABA
There are positive alternatives to ABA; in fact, many jurisdictions outside of Ontario (such as the UK) have stopped funding ABA in favour of other approaches. Others provide a range of service options, not just ABA.

Yet, after the Ontario Association for Behaviour Analysis hired lobbyists targeting eight Ministries at Queen’s Park, in 2017 the Liberal government unveiled a new $500 million government autism plan (Ontario Autism Program) where only ABA is funded, only ABA is allowed in schools –and therapists who receive public funding (including SLPs and OTs) now must become ABA-certified. Ontario’s entire autism programming budget has thus been earmarked for ABA. Today, not one dollar goes towards programs or services related to autism that are non-ABA.

Some parent-led organizations also have professional relationships with the ABA industry. Autism Speaks Canada, for example, collaborates on an online documentary series which features children (too young to consent to having their supposed “social deficits” exploited onscreen) to promote the work of a Canadian ABA therapist. (Please Contact us if you would like to be involve in our campaign around this).

It is disturbing that some Ontario parents support ABA, since it is neither wanted by autistics (the group supposedly being served) nor does it appear to be humane or effective. Why the disconnect? It may be that some parents have been frightened into thinking ABA is the only way to help their child. Indeed, parents report having engaged in therapies that don’t feel good to them or their child, because they have been told it is the only way to help their child. Since ABA is the only provincially-funded therapy, some parents and teachers may also believe that it is better than nothing.

ABA versus Acceptance
Some parents also support ABA for a more disturbing reason: the idea that their autistic child is not the child they wanted, and the desire to transform their autistic child into one that mimics a neurotypical child. An extreme example of this is the mommy-blogger who recently admitted to forcing her autistic child to attend a Sesame Street performance by dragging him through hallways and sitting on him, even as he screamed to leave.

Whether the child is autistic or neurotypical, every parent has to eventually accept that they are not getting the mini-me they may have dreamed of. The later this knowledge comes, the more damage is done. Many of us have felt this rejection from our parents and it doesn’t get any easier. No matter the therapies, we cannot change who we are. So when our parents perceive us as perpetually not good enough, not NT enough, it has a profound effect.

As Aaden Friday writes in their essay When You’re Autistic, Abuse is Considered Love: “I was told that I was loved every day, and yet I sincerely believed there were parts of me that I needed to destroy in order to be worthy of that love — and so I tried, and failed, and grew up traumatized, without ever understanding what healthy love looks like.”

Autistic acceptance is crucial to ensuring a child gets the supports they need. ABA’s focus on “behaviour” often makes it confusing for parents to recognize and accept their child’s needs, because much of the child’s communication efforts are mislabeled as “negative behaviours” to be punished rather than communication to be responded to. In addition to being cruel, this approach also stymies the problem-solving process and prevents positive accommodations and solutions from being implemented.

There is no “good ABA”
Some of us have been asked if we support “the good ABA”. But from the perspective of neurodiversity, there is no good ABA, because ABA fundamentally seeks to invalidate the authentic selfhood of autistic children. ABA approaches autistic children as a series of behaviours and deficits to fix and retrain, rather than as, well… people.

For these and other reasons above, we don’t see that ABA can be redeemed or re-branded: it should just be relegated to the dustbin of failed psychiatric approaches. And the sooner the better. It is heartbreaking to think of the many useful services and accommodations that have been neglected due to our province’s over-focus on ABA.

But it’s not too late to change!

Alternatives to ABA
What are the positive alternatives to the negative ABA cycle we’ve been experiencing in our province? Here is a brief look.

Universal Design. As with other conditions or disability, accommodations should be central to any home, workplace, school or public space. The concept of universal design is that accessibility is “a fundamental condition of good design.”

We have a long way to go in Ontario on universal design. Accessibility is too often left to the discretion of individual teachers, employers or others. For example, some Ontario public school teachers implement classroom design changes that help autistic students and transform lives, but these projects are currently all ad hoc. The Province should consult with autistics and teachers and undertake a Universal Design study for making classrooms across the province accessible and friendly for autistic learners.

The principles of universal design can also be applied in the workplace and in public spaces. We are seeing promising changes from the IT sector in making job interviews and work spaces and arrangements accessible for autistic employees. Government should consult with autistics and employers about their best practices to learn and implement them in a range of areas.

At present, autistics are not consulted by the Ontario Government when developing the programs that impact us. Autistic youth and adults should be consulted when policy is made. The Province can follow the disability rights approach, where the clients are consulted on the accommodations and services needed. This approach can be used to  look at best practices across the board.

Autistics as Experts. Currently, the Province’s approach to autism services has been determined by lobbying groups often led by parents. This is unfortunate, because most parents are not autistic, they are not experts and they may know very little about what truly works for autistics. And as hard as this may be to hear, their goals do not automatically align with the goals of their children.

Policymakers: learn what your autistic constituents need –from us, not our parents. Also, look to other jurisdictions that take a progressive approach to disability and/or autism. Our province’s services need to transform into a fair, helpful system and away from the wrong-headed and bloated service model we currently suffer under.

Moving Forward
Autonomy in communication, work, housing independence, comfort, freedom and dignity are important to us all – yet none of these appear on any Individualized List of Goals and Objectives for ABA Services. In fact, Ontario’s current Autism Plan does not even mention AAC, employment, housing, services for adults or a host of other community priorities. Only ABA is funded.

If Ontario is to become a province that embraces equality, policymakers need to move sharply away from the approach of making parents and ABA providers the sole stakeholders and instead focus on the experiences and input of autistics and other disabled Ontarians.

ABA tried to teach us never to say no. But we are going to remain noncompliant, stand with our allies and say NO to ABA in this province. Because when you say no to ABA, you discover what you can say yes to. It’s time for our province to find out, too.

 

 

Counter-Protesting Autism $peaks Canada: Experience and Lessons from the Field

Members of A4A Ontario counter-demonstrated at the Autism $peaks Walk-a-thon in Toronto on June 3, 2018.

Why we were there
Autism $peaks doesn’t have the support of most autistics. A$ uses hate speech to describe autism, using lies like “epidemic” and portraying autistic children as burdens. A$ does not have autistic people as decisionmakers in their organization. Almost none of their budget goes into useful services, mostly towards salaries and “research” (see below). In fact, 51 percent of A$ Canada’s budget is consumed by overhead costs, well beyond the reasonable range according to charity watchdogs.

Autism $peaks Canada also gives more than $500,000 per year to MSSNG, the world’s largest Whole Genome Autism Study. Through it, researchers are attempting to identify autism-linked genes which, if found, would become part of prenatal testing, abortion and eugenics.

Our action
We had a big banner which read: “Autism Speaks Doesn’t Speak for Us” and several signs that we held. We stood at the periphery of the permitted event space and along the public sidewalk during the actual march. Every marcher saw us, due to our proximity to the start of the route.

We handed out information about Autism $peaks as well as alternatives to it that are neurodiversity-friendly, so that walkers could learn about and start to support organizations that truly help autistic people.

We also handed out hand-made stimmy toys to kids attending the Walk, because the event –with its blaring music and crowded, chaotic space — was not at all sensory-friendly. To me, it felt good doing something that could have an immediate effect to help autistics and I’m so glad someone in our group suggested it!

How walkers reacted
“Get the f—k out of here. You’re ruining a wonderful day.” How… wonderful. This dad, who was about 6 foot 5, was attempting to intimidate two of us. I steered clear of him but the other demonstrator felt bold and later walked up behind the guy to say “I’m still here…” So awesome. We did have some fliers crumpled and handed back to us, but a lot of people also took them and we got some thank-yous for sharing the information. We also gave a lot of fliers to  downtown passers-by to let people know that what they see with A$ doesn’t represent our community.

An event organizer approached us early on and tried to tell us we couldn’t be in the space. We held our ground and politely asked her to send over City Hall security, who could provide the zoning rights and regulations for our action. About an hour later, security came by and told us we could stand with signs anywhere on premises but could only hand out fliers in designated areas (public sidewalk). We assured them we didn’t want to make trouble, which they accepted, and we never heard from them again.

The kids liked the stim toys, which we got at the fabric store or made from craft materials. We saw a lot of children under pressure due to the sensory overload of the space, where Marvel characters, giant Elmos and a pack of cheerleaders (complete with A$-blue pom-poms) were cramming in their space and a PA system the size of a North York bungalow was blaring pop music, live singing and screeches … er, I mean speeches.

It’s not easy to counter-protest an event like this. You don’t know what you will encounter from attendees. In addition to some hostility, there was defensiveness. “Autism $peaks helped my child!” yelled one parent.” “So do we,” replied one of group. “Why are you here?” a lot of people asked, upset but sometimes also curious. We tried our best to educate in an honest and forthright way. Meanwhile most of us had our own sensory issues with the event itself, as well as past negative experiences with institutions and with A$. Being there required spoons.

What I learned
I learned the usefulness of waiting for security to come and determine our rights a counter-demonstrators, rather than trusting someone like the event organizer (who simply wanted us to evaporate). Asking to wait for security defused a potential situation, bought us some time and gave us the clarity we needed about our rights in the space.

An important tidbit from the security guard: “Next year if you want to leaflet on the grounds, you just need to apply in advance for the permit to do so.” Duly noted!

I also learned that having a two-sided flier – one positive, about neurodiversity and one with some hard truths (about A$) was useful. We could hand them positive-side up and people would be feeling good when they flipped the page.

There was no media at the event. In a city this size, there isn’t time for it to be covered. A good option for getting media would be to attend a walk in a smaller city or town.

It had me thinking about the sunk-cost fallacy as well. Many families have invested a lot of time and money into the events and culture of A$. How does one crawl out of that world? How often would that even happen? The measurable benefit of the action was to reach out to autistics who were brought to the event, to speak the truth about A$ in a public way – and to represent our own community. They have excluded us in their autism worldview, but we will make ourselves a presence anyway.

Looking ahead
I’m so grateful for everyone who supported and/or attended this demo; each played a crucial role in planning, reacting and maintaining our rights as a counter-demo amidst the commotion of the Walk event. Every day I am thankful for the fellow autistics who drive our group with their creativity, strength, camaraderie and strategic skills. #Actuallyautistics are now a presence in Ontario, invisible no more thanks to all those who support, plan and/or attend our actions. As we enter a Doug Ford era, our presence will continue to be essential. Nothing about us without us.

 

Ontario Election: Candidate answers to our questions from Joel Hardin, NDP

Polls show that it is a two-way race for leadership between the NDP and Doug Ford’s PC Party in the Ontario election. NDP is consistently polling close to PC: meaning that the Liberals do not have a chance at leading the next government. For those who want to defeat the PC Party, the only strategic voting choice on Thursday is the NDP.

There is nothing that helps autistics in either the Liberal or the PC platforms. By contrast, the NDP have committed to consulting with autistic people in the development of programs and services, which no other party has promised or done. This is in line with their general principles about governance.

Answers to our candidate questions: Joel Hardin
NDP candidate Joel Hardin (Ottawa Centre) responded to our candidate questions, helping to outline the NDP position on the issues we asked about.

Sheltered workshops
Background: The government recently banned the long-standing practice of sheltered workshops, where developmentally disabled workers earned pennies for their work instead of a fair wage. Both the PCs and the Greens leadership have hinted they want to re-open sheltered workshops and the Liberals would not commit to a position.

Our question: Would the NDP work to maintain our provincial ban on sheltered workshops?

Hardin’s answer: “In a word, yes. Sheltered workshops, which segregated and often underpaid their workers, began to be transitioned out in 2016, and will be fully phased out by January 2019. The NDP supports the provincial ban on sheltered workshops and will not restore them.

“Sheltered workshops are, and must continue to be, a thing of the past. So-called ‘training’ under these (and other) circumstances has been too often a euphemism for exploitation. In addition, integration into the wider community, rather than hiding people away in this fashion, is clearly a preferred option—this is, after all, 2018.”

Representation: Nothing About Us Without Us
Background: Ontario is behind the times in terms of engaging autistic people in advising on our needs and the services that work for us. For the $500 million Ontario Autism Program, not one autistic person was surveyed or consulted with.

Our question: Would the NDP directly and meaningfully engage autistic people as you develop policies that affect our lives?

Hardin’s answer: “This should go without saying, but too often it must be said—those affected by government policies, such as people with autism, must have a direct role in the shaping of those policies and in how they are to be implemented. The NDP will overhaul the way Ontario delivers support services for people on the autism spectrum. We will ensure the full involvement of people with autism in every government decision that impacts people with autism – in line with the principle of ‘nothing about us without us.'”

Developmental Services Ontario and other programs
Background: Autistic adults without an intellectual disability can no longer access Developmental Services Ontario. In fact, there is no section of policy in Ontario that makes specific mention of autistics (other than the OAP, which only funds ABA for children). This  makes it difficult for us to navigate services.

Our question: Would your party work towards extending the DSO to meet the needs of autistics?

Hardin’s answer: “Yes. An NDP government will invest $67 million annually in increasing support for agencies, including the DSO. An NDP government will base care on a person’s need rather than their age so that care can follow them as they grow older.”

Budget and priorities going forward
Background: In 2017, the Ontario Association for Behaviour Analysis (ABA) hired Pathway Group to lobby eight Ministries at Queen’s Park. Today, under the Liberals’ $500 million government autism plan, only ABA therapy is allowed in schools –and all aides and therapists who receive public funding must now become ABA-certified. The Liberal Party has placed the autism services portfolio with the Ministry of Children and Youth and there is no policy or service model at all for autistic adults.

Our question: Would the NDP work to revise the OAP to reflect consultation with autistics, (which didn’t happen when it was developed)? Would you critically review how the OAP was developed and establish best practices building on lessons learned?

Hardin’s answer: “Andrea Horwath and the NDP will launch a comprehensive autism-support strategy, including on the Ontario Autism Program, built in full collaboration with families, caregivers, experts, and people with autism. Best practices are established, as you note, by critical examination of existing programs, remedying the flaws and making improvements. The NDP is committed to full consultation with A4A in this process going forward.”

Conclusion
In addition to the above info, the NDP platform lays out meaningful policy on a range of intersectional issues. The NDP has committed to provide drug and dental coverage for all Ontarians, making this care accessible to low-income Ontarians for the first time. The NDP also commits to “ensure LGBTQIA2S+ communities have access to affirmative and inclusive health care” with a number of inclusive policies and initiatives. The NDP also supports increased funding for mass-transit as well as green/sustainability plans and other programs that will serve all Ontarians.

For these and other reasons, we wanted to write this post on the eve of our provincial election. We hope that you can get out to vote and that the results of this election will be good for our communities as well as all of Ontario. Thanks for reading.

Statement: Ontario’s Sheltered Workshop Should Remain Closed

The Government of Ontario has wisely decided to close all “sheltered workshops,” effective January 2019. This decision reflects 21st century thinking about disability, human rights and workplace dignity. Unfortunately, this legislation is now under attack by regressive forces in our province.

Under the sheltered workshop model, workers with intellectual or other disabilities were placed in factories and other workplaces to do jobs for pennies on the dollar. To add insult to injury, the low wages were often accompanied by the myth that it was “training” for future employment at a living wage. But, as it turned out, sheltered workers weren’t being trained. They were trapped.

We understand that some corporations or parents may not agree with the statement that sheltered workshops were unfair to workers. But the Government of Ontario does. As Ministry of Community and Social Services spokesman Daniel Schultz writes:

“There is simply no justification in the 21st century to segregate any group of people and pay them less than minimum wage for the work they have done.”

Following the Ministry of Community and Social Services’ decision to close sheltered workshops, Ontario Bill 148 guaranteed that the term training cannot be used by companies as an excuse for unpaid labour. Provincial policymakers heard the personal stories of workers – stories we are also familiar with. They knew that when someone is working without wages for months or years on end, they’re not “training”: they’re being exploited. So the Province took action.

Today, both the sheltered workshop ban and Bill 148 are being protested by corporations and parent groups who oppose equity and fairness in the workplace. To them we say unequivocally: sheltered workshops should remain shut down. We will not go back in our province. Parents, we urge you to find your way forward instead.

We also encourage the Government of Ontario to stand strong. Know that disability rights activists and self-advocates stand with you. Continue to reach out to us as you shape the policies that affect our lives. Don’t waver in your commitment to fairness in the workplace. And be wary of people who claim to be their child’s voice. Remember that everyone has a voice.

Nothing about us without us.

Signed by:
Organizations
Autistics for Autistics Ontario
Canadian Autistics United
Community Living Ontario
London Autistics Standing Together (L.A.S.T.)

Individual activists
Dawn Arrowsmith
Dayna Baszczynski
Anne Borden
Jeff Chislett
Liam DeLais
Kyle Echakowitz
Jacky Ellis
Marni Goldstein
Talia C. Johnson
Kristin C. Jones
Mandy Klein
Alex Kronstein
Sandra Marcroft
Sarah McFadyen
Raya Shields
Christine Hughes-Wiklund
Cathy Wright
Jigme Datse Yli-Rasku

If you would like to add your name to this statement, please email us: a4aontario@gmail.com

 

Employment for Autistics in Ontario: The Need for Private and Public Sector Collaboration

by Anne Borden

A4A recently had an info table at Toronto’s annual SpectrumWorks job fair. The job fair brings hundreds of autistics together with companies to interview for jobs such as banking, service, IT, admin and others. Neil and Xavier, the organizers, are committed to creating a better environment for autistics to find, enjoy and retain work in our province. It was really cool of them to reach out to #actuallyautistics such as our organization!

We met lots of autistics and talked about the job search process, workplace rights and other issues. We also did some education to the broader community. We were glad that the event organizers asked us for input to make next year’s interview processes and event space more autistic-friendly. It feels like we are on the cusp of an important breakthrough on the issue of unemployment in our community. The fact we were invited is a big step in self-representation and it is encouraging to see the private sector recognizing the strengths of autistic workers and actively recruiting.

But….

Efforts to train, educate and recruit employees in Ontario seem to be coming almost entirely from the private sector. Where is the Ontario government? Our rights in the workplace are protected by Ontario law (under the umbrella of disability), but how can we even exercise these rights if we’re not able to find employment? The Province is shutting down all sheltered workshops by 2019 –an essential step in human rights–but where are the proactive programs for autistic and/or disabled who are seeking employment?

There is great work being done by the private sector and some not-for-profits, but that’s not enough. Our provincial government needs to partner up on these initiatives, identify the scope of the challenges and come up with solutions. Most importantly, it needs to shelve its terribly misguided Ontario Autism Program.

Over the next few months, we will be doing an employment study of autistics in Ontario, both to assess needs and to get feedback and ideas from autistics across the province. This has never been done before and it is needed.

We will also be looking into sharing resources on autistic mentorship and networking activities around employment and workplace issues.

If you would like to be involved in this project, please Contact us. We will be updating our social media and blog as the project develops further.

Autism Awareness Flag Raising 2018, by Talia C. Johnson

We are sharing blogs from our members throughout the month. Here is an insightful piece about A4A’s April 3rd Raise Our Own Flag rally–and the Autism Ontario flag-raising that we were responding to–by A4A collective member Talia C. Johnson. It can also be read on Talia’s blog.

Autism Awareness Flag Raising 2018

Yet another day and month with a focus on a marginalized people. March 31st was Transgender Day of Visibility. April is a month that focuses on autism and April 2nd was Autism Awareness day. Notice anything about the differences between these names? One is about being visible, noticed, affirmed, included, and providing education. The other calls for awareness, a word that does not imply visibility, that still seems to push people into not being visible with their autism and identity as an autistic person. In Toronto to mark Autism Awareness there was a flag raising for Autism Ontario at Nathan Phillips Square. This was not an event that was organized or run by actually autistic people. In response to this, Autistics for Autistics Ontario (A4A) planned a counter-rally to ensure that diverse autistic people were not only present, but visible. The counter-rally was not against Autism Ontario, but for showing diversity and ensuring inclusion of autistic people in discussions. I attended the counter-rally as part of A4A and stayed for the flag raising by Autism Ontario and the unveiling of the A4A created flag.

A4A members and supporters gathered where the flag raising was taking place. Autism Ontario had booked and planned the event on the upper level of Nathan Phillips Square. As people gathered for the flag raising there were a number of discussions and people took flyers that A4A had prepared. Some of us had discussions with people from Autism Ontario that were cordial and it appeared that they were willing to at least hear us out. As part of the counter-rally four people spoke about autism from their own perspectives, research, and experiences. People who had arrived for the flag raising were interested and paid attention to what was said.

The Autism Ontario event was rather disappointing. They had a number of speakers before the flag was raised. Mayor John Tory spoke as did provincial cabinet minister Michael Coteau who was responsible for the Ontario Autism program. Other speakers included the Ontario Ombudsman, a representative of BMO (corporate sponsor), and the Executive Director of Autism Ontario, Margaret Spoelstra. There were also two autistic people who spoke about their perspectives. Both autistic people appeared to be male. The only woman who spoke was Margaret Spoelstra. Congratulations, they had an almost all-male list of speakers. This is part of why the A4A presence was necessary.

Autistic people are not all males. Autistic people are cis, trans, non-binary, binary, genderfluid, and everything in between. The lack of diversity in speakers was noticeable. It showed that awareness is not about visibility, but about the opportunity for publicity for Autism Ontario and not the wider autistic community.

The speeches were not easy to hear unless one was in the thick of the people sitting in chairs or standing. This is a problem for those of us who are not comfortable in tighter, more crowded spaces. Because I was not up to being in the midst of the crowd, and the poor quality of amplification I did not hear everything each speaker said. The content of the speeches seemed to be mostly boilerplate type materials that repeated a lot of the points we hear all the time. The BMO person sounded like a stereotypical corporate manager who was doing a lot of patting themselves on the back because they have a practice of hiring a few autistic people. We do not know what working conditions are actually like for autistics working at BMO, nor if they are paid adequately.

For those of us who were part of the counter-rally, Minister Coteau’s presence was particularly problematic. The Ontario Autism Program is not a program we can support. It limits what resources are funded and allowed in schools, there was no autistic representation in schools, and it promotes ABA (A4A Position Statement). ABA is practice that has been shown to increase the prevalence of PTSD in autistic children and youth. Further, it is based on and was developed with the same principles as reparative/conversion therapy for those who are LGBT. Reparative therapy is a practice that is illegal to practice on children in Ontario.

What stood out most for me was that all of the speakers used person-first language when talking about autistic people. At this point identity first language is what the majority of autistic activists and self-advocates are using, and want to see used. The post “Identity First Language” by Lydia Brown is a good discussion as to why we prefer identity-first language. I like to use an analogy comparing it to how we use identity first language among trans people. We do not say “someone with transgender”. Those who do use it, usually referring to transgenderism or transsexualism, are the ones who would deny our existence as trans and put as many barriers in our way as possible. To constantly hear the person-first language coming out of the mouths of the speakers was tiring, exhausting, and was a message to autistic people that our voices are not being listened to. We can be tokens for publicity sake, but when we raise actual concerns we will not be listened to, a topic I explored in my post, “A Cat Named Autism”.

After the speeches and flag raising there was a reception in the area outside the City Hall Wedding Chapel. This was a confined space that was crowded and loud. What a great way to send a message of inclusion to autistic people! We just love being in spaces that cause sensory overload within about thirty seconds of being in the space! The idea that spaces can be overstimulating for autistic people is not a new one. Listen to us when we say this is a problem. We’ve only been saying it for decades. Or, maybe we need a white, neurotypical/allistic, straight, upper-middle class professional man to say it in order to be listened to.

A question I have for organizations that are promoting autism awareness this week and this month: What are you doing to be truly supportive of autistic people?

Call to Action
We can and must do more as a society. Some concrete steps include, but are not limited to:

  • Do not claim ABA is the end-all and be-all for working with autistic people.
  • Ensure that #ActuallyAutistic people are not only present, but given a voice and listened to.
  • Stop using person-first language when talking about autistic people.
  • When having public events, include a diversity of autistic speakers.
  • Do not dismiss autistic people who speak for themselves.
  • Avoid use of labels that focus on how “functional” a person is.
  • When hosting events, ensure that they are not sensory nightmares and ensure there is a quiet space where people dealing with overload can go for respite.

 

 

 

 

Autistic April Survival Guide, by Rishav Banerjee

Throughout the month we will be re-printing some of our members’ blogs about April, autism “awareness” and autistic pride. This post is by Rishav Banerjee from his blog, Autistinquisitor:

Autistic April Survival Guide

This is a message directed to all members of the Autistic Community. Note how I use the term “Autistic”, and not “Autism”. When I refer to the Autistic Community, there is a simple criterion one must fit to be a part of it: you must be Autistic.

This is meant to be a survival guide, a call to action, a sandbox of ideas, and more. It is meant to bring comfort, but also amusement and joy, in a month where we are often overwhelmed with stress, negativity, and fear.

Another year, another April. I think we’re all used to it by now, but we really shouldn’t be. At first glance, you may think the puzzle pieces and blue lights that signify “awareness” are somehow great. As the Autistic community continues to push toward acceptance and the neurodiversity paradigm, those who oppose it adjust their tactics accordingly, sometimes attempting to hide their true colours. They mask their ableism, and their desire for a world where we no longer exist.

Yet past the headlines and clickbait, what we really see is a horror show. This horror is not Autism, but peoples’ reactions to it. Tragedy. Epidemic. Disaster. Crisis. Before April 2018 even started, articles are already pouring, of people referring to their Autistic children as burdens, and alarmist rhetoric about how the number of us are supposedly increasing. The past 12 months have been filled with ableism and anti-autistic sentiment, from “To Siri With Love” to “Autism Uncensored”.

There is much more that can be said about the rhetoric in April, but other blogs have covered that adequately. My question is: how do we deal with it?

It’s heartbreaking that in a month where we are theoretically supposed to be accepted and loved, we are instead feared and further ostracized. It is appalling and deplorable that Autistics are sometimes so traumatized or afraid,  we dread the thought of leaving our homes, with some of us going into hiding, even online.

“Awareness” turns into “beware-ness”: we exist, and that is scary and tragic. People are aware of Autism, but that doesn’t mean they understand it. Often, it is quite the opposite, especially in a culture dominated by neurotypicals and the pathology paradigm. Many of us get overwhelmed by the hate and fall apart or become reclusive. Sometimes it’s necessary. We need to take care of ourselves first, long before we can protest the anti-autistic vitriol flowing through April. But the two do not have to be mutually exclusive at all.

On self-care:
There are many “self-care” guides for Autistic and non-autistic individuals. However, many are either generic or unhelpful. In some cases, counterproductive. My view on self-care(for anyone), on the other hand, is much simpler: do what you love, and find what makes you happy. For Autistics, this can mean focusing on things that interest you; your passions. Or what non-autistics refer to as our “special interests”.

Our special interests are frequently referred to as “weird”, “unhealthy”, “obsessive”, or other derogatory terms meant to pathologize our existence. And I say, to hell with that. Those are words meant to oppress us, to prevent us from enjoying things as well as we do. Our interests bring us joy, and oftentimes end up highlighting our skills. They bring out the best in us, as they do with most people. And we must use that.

Self-care is not one concrete thing and making yourself feel better and happier is also not a concrete thing. It varies from individual to individual, and it is important to find whatever it is that makes you happy and do it.

When it comes to immersing yourself in your interests and passions, it leads into the other part of this survival guide: how you can turn self-care into a weapon of protest. Particularly during this month, I will openly speak about my interests and passions, no matter how unusual. We are often discouraged from doing so, lest we come off as “odd”. We are taught to be ashamed of having intense passions and interests.

“Awareness” has contributed to this. But it doesn’t have to stop us. On the contrary, focusing on our passions and special interests is, in my eyes, a double-score: we get to make ourselves happier by thinking about and doing what we love. And it in and of itself is a form of protest.

“Respect existence or expect resistance.”

This quote sums up my survival guide for “awareness” rhetoric throughout April. For all the hordes of people proudly displaying their desire for a world where we don’t exist, the best way to protest that is to be ourselves wholly and without compromise. It is hard, but it is worth doing. Simply being openly Autistic is in and of itself an act of resistance. We have been oppressed for long enough, and it is time to take a stand. We were never broken, and we will not go away for the convenience of others.

We are often forced to try to be more like allistics, to be someone we are not. That must end. As some would say, “living well is the best revenge”. If we can show people that despite all the hardships and struggles we face, we are capable of being happy and thriving, we can be the living defiance of the narrative that being Autistic is an all-out tragedy. We can display parts of us that we do like. In the process, we can wind up frustrating those who express anti-autistic sentiment.

There is another way we can protest simply by being ourselves: stimming… openly.

I have written about this before. Stimming is a universal trait within multiple species. Autistics may need to stim more due to a complex sensory perception, and the need to direct our focus. Stimming is something that is supposed to be both helpful, and a way to express ourselves through movement. And yet, it is vilified by non-autistic people.

We are made to suppress it through ABA, and taught to avoid it in most other situations, lest it come off as “weird”. But who cares about “weird”? If it brings you comfort and doesn’t harm anyone, it’s acceptable, and as far as I’m concerned, “weird” isn’t a bad thing at all.

Stimming brings us comfort and it brings us joy. It helps us deal with our pain. It helps us connect with the world and the universe around us in a unique, and special way. Most importantly, it is a form of self-expression. An Autistic person’s stims are as unique as them, and they deserve to be respected as such.

Stimming also happens to be one of the ways Autistic people are easily identified in public. If people have a hard time believing you are Autistic, flourishing your stims openly may persuade them before they have the chance to voice that.

Stimming openly is also a measure of defiance, in a society where Autistic expression is frowned upon. Stimming openly and without hesitation is one way we can enjoy ourselves, express ourselves, and defy cure-rhetoric.

In summation, two of the best ways to survive April as an Autistic person are to openly stim, and to express your passions and interests. Turn to the things you love for joy, even if they are forbidden. It has long been said that the best way to defy the anti-autistic narrative, and to spite your oppressors, is to be openly Autistic in front of them. To flaunt it, and to wear it with pride. Living as an Autistic person is one of the most defiant things you can do and is also the most gratifying.

That being said, it is important to take safety precautions. When it comes to openly stimming, apply your judgement and be careful doing so around law enforcement, or anyone with the power to do you serious harm. Remember to protect yourself first and foremost: know your limits, and apply your judgment to the best of your ability. You know how to take care of yourself best.

These ideas are not to be seen as solid instructions, but concepts to be molded, customized, and personalized to suit you. Withstanding April is hard for many Autistics, and I hope that these ideas bring comfort, hope, and amusement to some of you. Best of luck surviving, and fighting April.