Awesome Anthony and Autistic Contribution

Filed Under (Acceptance, Contributions to Society) by Estee on 24-08-2012

I think Anthony is awesome.

I think that as autistic people age, it is wonderful that they can have assistants to enable them to participate in employment, college, university and like Anthony, starting a business.

I think that as parents, Anthony can help us understand that being in society is about supporting one another — that it’s more than okay to be autistic and have support if it’s required.

I think Anthony redefines what it means to be “productive.”

I hope you do too. As we begin a new school year, let’s think not only about inclusion, but how we can support autistic people as autistic people. Meet Anthony:

Best of luck in your new business, Anthony!

Barriers to Information and Communication Technology

Filed Under (Ableism, Activism, Autism and Learning, Communication, Discrimination, Inclusion) by Estee on 21-08-2012

Tagged Under : , , , ,

ICT = Information and Communication Technology

School is fast approaching and some autistic children get access to inclusive schools and others do not. One of the barriers to inclusion is access to technology and other supports that can enable and autistic person to participate and become successful. Many camps and schools have boycotted the use of iPads for fear it detracts from a student’s attention. Some schools prefer “traditional” methods, and argue that technology takes away from that experience.

In the case for inclusion and access, these are some of the antiquated attitudinal barriers we must work to deconstruct. Many non verbal autistic individuals, and other autistic individuals who learn better with computers for visual reasons as well as reasons to do with less distractive stimuli that can impede learning, need technology (and other accommodations) not just for school, but for vital communication and everyday functioning.

In an effort to break down barriers to access, “The Council of Canadians with Disabilities (CCD), a national organization working for an accessible and inclusive Canada, recently consulted people with disabilities about ICT use and recommendations on barrier removal and prevention.” Although there is a duty to accommodate, most schools and camps will not do so, especially for the autistic person. Here’s some more examples:

Stumbling Blocks

Although accessible ICT is available in the marketplace, it can take an incredible amount of self-advocacy and persistence for an individual to obtain it. Doreen Demas, who has vision impairment, discovered this when seeking an accessible cellphone from the Manitoba Telephone System (MTS). For customers without a disability, acquiring a cellphone that meets their needs is a relatively straightforward consumer activity. MTS’s original offer to Doreen was an inaccessible BlackBerry. Over a period of several years, it took numerous frustrating sessions with MTS representatives and a complaint to the Canadian Radio-television and Telecommunications Commission (CRTC) for her to obtain a contract, with reasonable terms and conditions, for an accessible iPhone. The CRTC has a policy requiring that Canadian cellphone service providers include an accessible product in their catalogue of devices on offer to the public.

Some post-secondary students with disabilities encounter barriers related to ICT. While a student intern, who requires large print, may be most comfortable using a particular program to enlarge text, the intern’s field placement agency may think it is reasonable to expect that person to use whatever programs are available on the in-house system. Although educational institutions and employers have a duty to accommodate disability-related needs, individuals continue to struggle to have such accommodations provided.

The other barrier is poverty. Most of our disabled population, due to so many barriers to employment and educational institutions, end up living beneath the poverty line. This also make access to essential communication and technologies expensive:

Like everything in the marketplace, ICT comes with a price tag. People with disabilities experience a disproportionate level of poverty. People with disabilities of working age are about twice as likely to live on a low income as their counterparts without disabilities. “There is the assumption that everybody can afford a computer. That’s an assumption. It is not a fact,” says Marie White, Chairperson of CCD’s Social Policy Committee. “Our most challenging issue is poverty.” Some people with disabilities face additional costs because they have to buy ICT, and they also must purchase adaptive technology to make inaccessible technology usable. In some provinces, provincial programs provide people with disabilities access to technology.

While some autism organizations endeavour to provide some grants to autistic people for access to iPads and the government subsidizes other communication devices, there are wait lists and rental fees can still be expensive (you can seek some assistance through the Ontario Ministry of Health and Long Term Care).

For Adam’s sake and like many other parent advocates, I’ve had to learn a lot about AAC (Assistive Augmentative Communication) and how to use it by myself through courses and “old-fashioned” book-learnng. In turn, I train many of Adam’s teachers and support workers in his use of the iPad and with typing. Finding SLP’s trained well in the field is difficult but necessary, and there are a precious few who do it exceptionally well. While SLP’s are typically trained in “speech” functioning, there is tremendous value in their teaching to the ways and means of autistic communication, literacy and the use of devices for advancing skills. The device is often referred to as the individual’s own “voice” or “talk box,” and should be treated with the same care and respect.

It’s tough to still get people on board at the school level, to see devices as a necessity for many autistic people, and to include them with the same value and respect as we would the voice of any other child.

I hope you have some success in using this information when you approach the school boards and other support workers.

References:

Integrated Access: The Right to Universally Designed Information and Communication Technology Evolution of Access—Building in Access to Information and Communication Technology, Abilities Magazine.

Source: “Personally Speaking: Poverty and Disability in Canada,” Council of Canadians With Disabilities.

Video on The National Action Plan from the CDC:

How Can Our Autistic Children Participate?

Filed Under (Acceptance, Autism and Learning, Books, Inclusion, school, Travel, Uncategorized) by Estee on 20-08-2012

“Our job isn’t to figure out if a student should be participapting. Our job is to figure out how a student should be participating.”

This is a line from Paula Kluth’s DVD, author of You’re Going to Love This Kidon inclusion in the schools.
We are on the brink of another school year. Many parents struggle with finding not only a placement for their autistic child, but the right placement. In Canada, as is for many places in the world where children are more likely than ever to be included, children and parents with autism are still some of the most excluded in our society. I often find it shocking the lack of support in my country where we seem to have otherwise great social supports. Despite there being many great and willing teachers, the school system is still one of the most unjust insitutions for autistic students.

While many of us work to change attitudes and policy in Canada and the US, I want to reiterate what an important step integration and inclusion is for all of us. Watching Adam at camp and even younger people with disabilities, the younger generation already has much more exposure to kids with disabilities than my generation ever did. Many a parent I’ve met will register their child into an integrated school in order for their children to respect and value everyone. After kindergarten, however, the segregation typically begins. While we may have seen more effort towards inclusion, we are still teetering between the two extremes.

Watching Adam with other children and their patience and acceptance shouldn’t just happen once in a while or at summer camp. Adam has developed so much this summer, as he does every year, and his peers do too. They are much more tolerant and accepting than I can remember of my generation. It is an indication of how important it is to start inclusion young and from the get go. I believe it is the older generations like mine who simply let old habits get in the way. Watching how easy it is for children to accept human difference is proof to me that inclusion is good for everyone.

This post is dedicated a couple of submissions I received this summer for review: Paula Kluth’s website, DVD and book I’ve mentioned before, You’re Going to Love This Kid; Eileen Riley Hall’s Parenting Girls on the Autism Spectrum.

The key for teachers is to learn how to include. This involved adaptations in the presentation of lessons, to how a child can respond to lessons. Adam, for example, responds to multiple modalities, but the main way of teaching him and transferring his learning is through the visual — computers, iPads, manipulatives and actual experience in the field. Accommodations also include sensory breaks, exercise, and other adaptations to a classroom. For instance, Adam can focus better on a ball chair. Otherwise, he needs to move his entire body so this provides the feedback he needs right now in order to attend to his lessons.

While the pressure to “be normal” in its elusive forms and definitions was more difficult when Adam was younger, we have grown into another comfort level with our lives and ourselves. Adaptation is simply a wonderful way to make learning accessible to Adam and it’s a joy to watch him grow and learn. Paula has many tips on adapting lessons and changing attitudes so that teachers and schools can adopt full inclusion. She makes it sensible and inspiring. I suggest you check out Paula’s YouTube channel for more information.

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Eileen Riley-Hall is the mother of two autistic teenage girls and the author of Parenting Girls on the Autistic Spectrum: Overcoming Challenges and Celebrating Gifts (Jessica Kingsley Publishers). As the mother of a boy, I was wondering what I’d learn from Eileen, but knowing so many parents with young autistic girls, I had to recommend her book. Sometimes we just want to refer to another book by another parent for that down-to-earth advice. I would also recommend along with a how-to book such as this, all the books by autistic women including Donna Williams, Lucy Blackman, Dawn Prince, Temple Grandin, Jasmin O’Neill (among others) — some of the first autistic women to write from their own unique perspectives. I like to pair my parent-memoirs with those also written by other autistic people.

What I found most refreshing in Riley-Hall’s book was Chapter 8 on “The World Wide Web.” Most books written by moms of autistic children usually contain lists of therapies and websites that can seem overly-diplomatic, noting down every therapy out there for the parent to sift through without any critical analysis of the therapy, the way it came to be in the vast array of (and history) autism “treatments,” and the controversies and potential dangers surrounding them. In contrast, Riley-Hall offers some warnings and states the pros and cons of the many websites that parents must navigate when entering the autism community. “There are very distinct divisions within the autism community. So you have to know that whatever you read is fueled by an underlying position or philosophy about autism: what it is, what causes it, and how best to treat it..unfortunately there is very little middle ground in between.” (p.131). When I first started reading books about autism by parents ten years ago, I wish someone had provided me with that caveat.

In reviewing her list, it is apparent that Riley-Hall is recommending sites that support and accommodate the autistic as “complete,” an encourages society to value the autistic person. This book is part “how to” book and part memoir that makes Riley-Hall’s book accessible for the parent of an autistic girl. Best of all, it’s all about acceptance.

Best of luck everyone in prepping for another school year!

A Mother’s Notes From The Ghetto

Filed Under (Ableism, Abuse, Acceptance, Activism, Advocacy, Book Reviews, Critical Disability Studies, Disability History, Discrimination, Inclusion, Media, Parenting, Politics) by Estee on 13-08-2012

Like many of you, I watched the closing of the Olympic ceremonies. Today’s notes from the ghetto weave some thoughts about the Olympics, a book, a documentary, and the Canadian Charter of Rights and Freedoms.

In a waiting room this past week, Sports Illustrated lay limp and wrinkled on the table in front of me. An title about how the games were more inclusive this year caught my eye and I read it with disappointment. There was no mention of people with mental disabilities. I didn’t take the copy of the article because it wasn’t mine, and now I can’t find it to cite. You’ll just have to take my word for it unless you can find it for me.

I wanted to write a post remarking again how people with cognitive disabilities weren’t visible or participating in the games. As much as I watch the Olympics, I can’t help but see it as a symbol of our admiration of the able-bodied. Including some disabled people in the opening ceremonies and a Para-Olympian is supposed to change that view. The “main” Olympics gets the bulk of the media attention. In talking about the Olympics, then, the media coverage is a reflection of what the consumer wants to see. I’m not blaming the athletes for being able-bodied and I congratulate everyone for their remarkable achievements. I am, however, spotlighting the acceptance of exclusion.

Today I also finished Melanie Panitch’s Disability, Mothers and Organization : Accidental Activists and read about the three mothers who worked tediously to get their children out of insitutions in Canada and close them all down: Jo Dicky, Audrey Cole and Paulette Berthiaume. I read how these women lived in a time of not only gender inequality — “busy men” on boards versus women knocking door-to-door as volunteers — but also in a trail of institutions born from the eugenics movement. The first institution in Canada was the Huronia Regional Centre in Orillia, pictured above, which opened in 1876.

Ironically, as I finished reading the final chapter this morning, I tuned into the CBC documentary The Gristle in The Stew and listened to the stories of horrific abuse of the people who were labeled mentally “retarded” by professionals. These professionals told parents to just “forget about [their] children and move on.” The government film “One On Every Street” told parents that 1 in 33 children had mental retardation and described insitutions as happy places where children would be educated and rehabilitated in the name of getting them back into their communities. Not so for Paulette’s son and others like him. Her son Louis lived in an institution for thirty years before she could get him out.

Audrey, Paulette and Jo were made to feel guilty for not only having disabled children, but were also pressured to put their children into institutions and be “good mothers” for doing so. Many families lived in fear of not placing their children in institutions because they did not have access to other services so they turned a blind eye to the abuse. There was no “unity” in their struggle, for these fearful parents criticized activists against the campaign to close institutions in Canada.

While these three mothers fought (and won) to get all people out of insitutions in the name of their children, they were excluded and marginalized as “emotional” and “trouble-makers” along the way, often excluded from participating on major boards and committees. But they did not desist. These three women managed to close all institutions down in Canada, and worked arduously for over twenty years to do so. They worked in 1981 to include the disabled who were then omitted from Section 15, which dealt with equality, and secured human rights for the disabled in The Canadian Charter of Rights and Freedoms. They won an unprecedented $1,400,000 in personal dmages for 88 former residents of Saint-Theophile in Quebec in 1990 (pardon the omission of accents that I can’t access on this blog), among many of their accomplishments. They did so as volunteers. One reviewer, Susan DeLaurier says of the book, “Disability is often viewed as a narrow field of social policy, programs and services that leads to a set of parallel social arrangements that have isolated disabled people in segregated systems. By looking at the mothers of children with disabilities and their insights and researching their activism, it is hoped that disability will be viewed as a broad-based inquiry commanding social and political analysis.”

A class action law suit of $3 billion for the plaintiffs incarcerated and abused in Institutions in Canada, simply for having a mental disability, will happen in September 2013. Listening to Patricia Seth and Maria Slark, two of the plaintiffs in the documentary, made me shudder. As a mother, I already know of gender discrimination — domestic and public as a mother of an autistic child and an activist — and there are challenges with this in helping Adam. To imagine how the “accidental activists” had to wait for so long to see their children free again, reminds me why I feel anxious so often. I feel I am always looking over my shoulder and can never rest where Adam is concerned. We have to respond when advocates for any “treatment” or “therapy” which uses the same language and logic that incarcerated innocent people just a short time ago. In the ABA movement which started in Canada in the early 1990’s many of the campaign phrases and threads of logic echo like the halls of institutions. The ABA movement was founded on the premise that autistic children would recover by age six with the treatment (and now the argument extends to older ages) and would therefore no longer require “state” funding. At the time, the estimated costs of funding an individual in an institution was $85,000 a year. In 2012, I relate to the same feelings as these mothers and share their experiences even after feminism has evolved. The challenges and the way to help Adam become increasingly complex, there is resistence and fear of progress, old arguments persist and the “busy men” still exist.

Our situation remains fragile. Despite statutes, we have not achieved Inclusion for people with autism. Society does not see autistic or other mentally handicapped persons as truly valuable to our communities where definitions of “capacity” and “productivity” seem exclusive and informed by implacable economic theory. We see it at the most basic level as in extraordinary red tape in our education system and, after all, I’m “just a mother.” Despite detailed notes and expertise about our children, the public system will hardly pay attention to it. They prefer a report from a professional using standardized tests which is an exclusive and unjust method of testing an autistic person. I talked about some of this in another post about the many ways we experience exclusion. “The briefing notes by the Community Association for Community Living in 1993 noted the same: “despite the protection afforded to people with disabilities in the Charter of Rights and Freedoms, many barriers to participation still exist in employment, immigration, education and the criminal justice system.” (Panitch, p. 145).

There is another group who tell us to “never forget,” and this same standard must be advocated for the disabled who have experienced formidable abuse in their lifetimes. When Pierre Berton reported about the abuses at the Huronia Regional Centre in Orillia (pictured above) in The Toronto Star, Berton noted that after Hitler fell, “many Germans excused themselves because they said they did not know what went on behind those walls. No one had told them. Well, you have been told about Orillia.” Now I, along with others, am telling you about echoes; of the history that could repeat itself.

The Olympics is just one more timely, everyday example of using people as footnotes and keeping them in the ghetto. It is time to include all the Olympic events — special, para and everything else, under one umbrella. I work for the day when I can witness Adam attaining his full citizenship rights. Audrey Cole wrote a Manifesto with her two lawyers called A Manifesto of the Canadian Association for the Mentally Retarded in 1982:

“The Manifesto equated how the renewed constitution established the full autonomy of Canada within the community of nations with how the provisions of the Charter of Rights and Freedoms introduced a new history for people with disabilities as valued, participating members of the community. It concluded cautiously: ‘The Charter of Rights and Freedoms obviously has very important implications for Canadians who live with a mental handicap. It is not possible to determine fully what those implications might be until the provisions of the Charter are considered by the courts in the contest [sic] of real life situations.” (Panitch, p. 133).

Audrey Cole said in her interviews with author Melanie Panitch:

“Our struggle is long-standing. It will not only continue but will gain strength with every denial of a fundamental right to any person of any age with or without disabilities in this country…Outrage, as you know, can be a unifying force for the achievement of social justice.” (ibid, p. 69).

We’re living the relay race and our work is not yet done.

Reference:

Melanie Panitch, Disability, Mothers and Organization: Accidental Activists. New York, Routledge, 2008.

iPads, notepads and a note about teaching methods

Filed Under (Autism and Learning, Communication, Computing/iPad) by Estee on 07-08-2012

Adam’s iPad wasn’t working for a few hours over the weekend. It has been also phasing in and out — photos disappear then reappear. He uses his camera for his Pictello stories.

Meet a non verbal person — autistic or otherwise, and you’ll see an array of devices at their disposal. Some are more convenient to talk with, often one conks out or something happens. It’s technology. We need more than a reliance on the iPad.

I love the iPad. I’ve been teaching Adam to read a clock on and off for a while now. A sole reliance on “verbal behaviour” or output is not reliable. I had asked Adam to tell me the time. Now that I have the iPad, there is a “show me 4:30,” etc, and he can pick from an array of five possibilities. He gets 100%. I do, however, have to tell him to “pick only one.” That instruction works like a charm as he then understands that I’m not asking him to fool around and listen to kurplunks of wrong answers just for the fun of it.

I work between the iPad and the “hard copy.” The iPad and computer programs are very helpful to teach and now to refine Adam’s ability to listen to the instruction. As his part-time teacher, I model the correct response for him, and this makes it easier.

I’ve often noted that multiple choices are the way to go to determine his knowledge, as well as presentation. I believe Adam has taught himself many “subjects” and I get this confirmation every day. Here’s another example:

I used to ask Adam to do word searches with me on paper. You have to read the word and find it in a jumble of letters across, down or diagonally. Adam would seem never to be able to do it. Now on the iPad, he scans and finds the words faster than I can. I didn’t know he knew how to do it and I used to think he didn’t understand when it was just those paper-kind of word-searches. I also consider that having to draw a circle around a word was very challenging for him. He is still working on his fine motor control. I think about all the effort it must take to circle a word, that then that becomes enough. That action in itself distracts from the actual word search game. It’s like asking a non verbal autistic child to “tell time.” It’s just so hard to get out, then when the answer comes out, it may be incorrect.

Another anechdote from the movie The Brain: A Secret History (the title of the episode here reads “The Broken Brain” so I’m going to ignore the ignorance of that title for that is a social judgment of that which we still do not fully understand) A brain injured patient is asked to show, on his fingers, what number is being shown. On his fingers, the individual answers correctly by showing four fingers. Then, he is asked to say the number he says six. It’s to me, exactly the same thing that happens to an autistic individual with verbal communication challenges, well, of Adam anyway. Often he knows the right answer but he just can’t say it, or it comes out as the wrong answer.

I know that teaching has to be fun and interactive. I’m now at a stage where I’m going to have Adam tell me all about a story he has read with me. After that, I’ll be working on some narration of his own. It’s a process of picking up what I’ve read, using what I have at our disposal, some common sense and love at watching him grow and develop. Over the course of this summer, I’ve also noted that when we educate autistic children, we forego the academics for controlling the behaviour. I’m starting to believe again that attention can be accomplished through active engagement, following the interests of the child, no matter how “odd” they may seem, and building the necessary skills this way through visual suppport, parental and teacher support, love and yes, devices. Feel free to add to this list.

The iPad reminded me that to rely on it alone is risky. We need the support, back-ups and a variety of presentations that help with learning and communicating.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.