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Independence Before the Right to Inclusion is Not Equality

Filed Under (Accessibility, Activism, Aides and Assistants, Discrimination, Diversity, Inclusion, Law) by Estee on 11-11-2014

We at The Autism Acceptance Project will be addressing the following:

We need to discuss problems with autism programs, our communities (including schools) and inclusion. There is continued segregation and fissure within the autism community over the notion of recovery and independence. Our Canadian Charter of Rights and Freedoms, Section 15, states:

Equality Rights

Marginal note:Equality before and under law and equal protection and benefit of law

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
Marginal note:Affirmative action programs

(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability. (84)

It is, therefore, everyone’s duty to accommodate – equal rights means the right to be included. While Section 15 and other instruments exist and rights are stated, they are still not enacted. There are a lot of conditions for the participation in many programs, many of them made for the autistic population, and of course in our community-at-large. A recent court case cited this issue (Moore vs. British Columbia) whereby it was noted that remediation before the right to inclusion is not inclusion; this is in effect, discrimination. In fact, the term is adverse effect discrimination whereby the concept of remediation is a barrier to participation and inclusion. We can point to many autism services that segregate, punish, or attempt to normalize the autistic citizen as such. In Moore, this statement was made although not highlighted enough. The disability community must be involved in shaping the meaning of accommodation, and they are missing from the discourse in cases like Moore v. British Columbia, 2012. In short, remediation is not accommodation; the former can be viewed as a disciplinary term and the latter must be created in accompaniment with disabled people to enable disabled people. The case of Moore can be scrutinized in more depth regarding the ontological constructions in policy and law that continue to exclude people with disabilities in the school system and in other programs.

Problematic is our notion of independence as a criteria for participation and enabled (or supported) participation in the community. As a result, many autism programs, and of course universities and schools, maintain this barrier to participation. It happens when human assistants (appointed and/or approved by the autistic person) are not allowed to accompany autistic citizens; when children are segregated into autism classrooms; and when many folks who have significant challenges are not provided access under the assumption that they are not able because they are in need of support. Such assistance is akin to the deaf requiring an interpreter, however, our notions and associations around independence remain the foundation under which exclusion still occurs; such notions require our demolition. These conditions to participation are neither accommodation nor equality. This is also supported by Rioux and Frazee:

“Equality under s. 15 entails much more than simply ‘accommodating’ persons with disabilities into existing societal norms and structures leaving unscrutinized those norms and structures themselves. Substantive equality challenges the very existence of mainstream structural and institutional barriers, including the socially constructed notions of disability which inform them. For persons with disabilities, equality means the right to participate in an inclusive society. It does not mean the right to participate in mainstream society through the adoption of non-disabled norms.” (Rioux and Frazee, 1999).

If you attended the talks and film screenings in Toronto with the film’s subjects Larry and Tracy (Wretches & Jabberers) – autistic people who type to communicate and require assistance – it becomes clear(er) that most autistic individuals who are given access to assistance and communication devices with support can participate. It also becomes clear the levels of injustice that take place everyday for citizens who struggle with speech and physical differences. However, most of our therapies are built to make the individual as independent or non-autistic as possible. We require a standard (and law) by which service and assistance supports the rights of the autistic agent to be included. We know that many people will never “measure up” (as we like to think that they can be normalized through isolating intensive interventions) to become fully independent, but can enjoy life and participate given opportunity and access. By segregating autistic people and putting these conditions on their participation, we as a Canadian society are devaluing the autistic citizen.

We will be discussing ways and means to address this barrier, and call into question organizations (many of them autism organizations themselves who claim to provide services that are funded by the public purse) who provide a qualified inclusion – to those people whose bodies appear and behave as “normal” as possible. There will be thousands of autistic Canadians who will, as such, never achieve the quality of life that the Charter states, is their entitlement.

For further consideration and discussion, please view this video with Yvonne Peters, Gwen Brodsky, Ravi Malhotra who Discuss Inclusion After the Moore Case. This video provides some legal context for this discussion:

Reference:

Rioux, Marcia H. and Frazee, Catherine. (1999). The Canadian Framework for Disability Equality Rights in Melinda Jones & Lee Ann Basser Marks, et al., eds. Disability, Divers-Ability and Legal Change, Kluwer Law International. p. 89.

A Rights-Base Approach for Autism

Filed Under (Activism, Autism and Intelligence, Communication, Discrimination, Inclusion, Politics, What is Disability?) by Estee on 05-11-2014

Adam is typing a deluge of sentences, feelings, anger at being ignored by certain people; upset by some people in his life that still do not “see his mind,” as he puts it. As Adam’s parent and protector, I know there is good reason to share our journey and good reason to protect Adam’s growth by not sharing too much. I am cognizant of his consent so I will make hints and speak generally.

We all know that there are people who like to doubt and target the autistic child or adult. Adam has a cadre of supporters around him as he is learning to assert his rights and self-advocate now as a more fluent typist. The flood gates are opening and hopefully the people in his life will pay attention. Despite his prolific writing, there are many who don’t.

I was disappointed to read that an autism school, after having seen the movie Wretches & Jabberers, ream off reasons why it is so necessary for autistic people to become independent. We have a huge problem as we still cite autism as a problem in our society (mostly because of a lack of independence) and this makes it hard for many to live good lives. A blog post is not enough space to qualify what makes a good life, or how the notion of freedom and individualism is also a part of the disability rights movement itself. I will just go on briefly about the state we are in without those qualifications.

Instead of talking about rights to access, inclusion and support, our communities continue to discuss ways to make people independent before the right to inclusion and participation in society. There is a major flaw with this premise in that for most, this will result in permanent exclusion and segregation into special schools and disability centres. One method to reverse this may be to make it mandatory for acceptance and support to enable the right to be included, but of course we need a value system to buttress this. Until we understand how autistic people can be enabled, and how they wish to be supported, we usually set the stage for an inequitable and unjust relationships whereby the people who “teach” autistic people put themselves in a superior role of remediator (therapist, teacher, etc). This means that we believe that the normal body and behaviour is considered the “right” way to be in society.

We have to understand the necessity of support before we go further, and seek counsel from autistic people in how they wish to be supported.This happens in our everyday interactions, as every behaviour is a mode of communication. Good support that is grounded in understanding rights, the theory behind that, and more pointedly, the movement differences of many folks with disabilities helps us to understand the need for support (there are more points to be made but I just wrote these to be a starting point for discussion). However, we also have to remember that the supports are not universal because there is no monolithic autism. It is this tension about competing needs in the service industry that makes this complicated. Not every autistic person requires the same support, but everyone does require the same access and rights. Rights requires a more detailed discussion too, but again, I am writing from a basic premise that our rights in society are established even though they not always acknowledged or enacted.

Sometimes support can enable people to become independent. Other times, it can enable that much more independence than before, but not absolute independence. Of course, this is a fractured notion since none of us are independent. We can think of a myriad of examples of how we are all connected despite our heralded idea of individualism and the notion of freedom associated with this. By way of philosopher Charles Taylor, I quite agree that our modern notions individualism and freedom are tied in with instrumental reason, that is, a means to an end. In ordinary terms that relate to autism and independence, this means that the heralded modern ideal makes it incumbent to be independent to be included and to work (the means, to be independent, becomes the end, a person who costs less and is efficient to producing goods in a market economy as it is today). As such, the ideal is exclusive and does not work for the majority of autistic people. What we will have left after the misguided premise will be more need for adult services which continue to segregate and have done nothing to enable communication, choice, and participation.

The film Wretches & Jabberers certainly promotes the idea of the independent mind – but that mind is enabled by support. It refutes the assumption that a cogent mind and a fluent body must co-exist. We learn that the body will often not do what the mind is thinking, and that the body also has its own unique ways of knowing through movements we call “inappropriate” (the term “inappropriate behaviour” should be reserved for people who inflict ill will to another). Without support, many autistic people who have movement difficulties, inability to speak, and other difficulties, would never gain access to any communication whatsoever. In turn, it is equally unjust to take an autistic person’s voice away when a therapist or a support worker wishes to be successful in helping the autistic person to the point that it enables the therapist’s own career. For example, in many therapeutic settings, a therapist will do certain things to over prompt the autistic person to gain a positive outcome or may falsify data results. This happens with supported communication just has much as it happens in ABA and with other methods. A “best practice” seems to me to take all of the above into account to ensure that the checks and balances are there to test the support worker more than the autistic person – which requires a rights-based approach.

Supported communication’s time has come as more and more autistic children gain access with support and later do become independent. Maybe this is more so than in the 1990′s because many have matured from childhood to become regular and mostly independent (through typing) communicators.(For the time being I am not going into the problems of a positivist to this). It is this burden of proof, incumbent on the autistic body, that has sadly been necessary as a result of a doubting public on the intelligence of individuals who cannot speak, or who make “inarticulate” sounds and effusive bodily movements. However, let us not withdraw support for those who require the assistant or aide worker to contribute, work and communicate. For many, this interdependency will be vital to life. In this sense, plenty of proofs (as quoted from the film) are not enough. We need a proof of commitment from every person in society; we need the proof that autistic rights/disability rights mean something in Canada. We need to be able to enforce those rights.

So this obviously, I hope, points to something I think we all need to discuss: ourselves. What is it about society that keeps autistic people from participating as autistic people? What assumptions do we make about disability and belonging and why is most of it lip service and not action? What is a rights based approach to helping autistic people? Why are we avoiding helping people to use devices?

One thing I have learned is that we learn to include by including. Adam is severely autistic and intelligent and has so much he wants to offer. He has friends. He complains about being ignored by some people who likely assume that he doesn’t understand. These complaints suggest something very wrong with our assumptions that despite the work of autistic people for us to hear and see them, continue to be ignored. Why? What more proof do we need?

Now I come to the who benefits question. I’ve written about this before, as have many writers and theorists. Perhaps we have to take a look at the industry we have created from the vulnerabilities of others. Who is getting paid? Who is getting attention or even celebrity in the autism world and why? I’m fed up with an expert culture feeding upon parent’s imaginations and pocket books. As I see and do in our own autism lives here in Toronto, education and access can work. We are living and breathing examples of it. But ours is a hard-work story. It’s not a cure story, and not one that feeds into celebrity culture.

Every day I work to figure out why and who this can be made accessible to the many families who are in need of support, but either are drained financially or must be subservient to a program that they must take or get nothing else. You may think at this point that it costs too much. Indeed, that’s the economic cost to society argument that comes at a great cost to many. It is inhumane. The great cost is continue to promote a method of therapy fueled by an attitude that continues to segregate. We tend to concur with an argument that abuse perpetrated by aide workers happens because of economic reasons – that the worker is being paid too little. I realize this could be a topic of its own, but I can’t resist inserting it here. How can we accept this low standard for disabled people? We would not accept this for children, but over and over again we hear it happens to disabled people and write off the story instead of talking about our collective ethical responsibility to improve our attitudes and values towards the disabled in our society. And this needs to happen among people who are not touched by disability as much as within disabled families. The only way we can make it happen is together. The only way we can improve our lives is to change the way we discuss autism and society.

I would love to have a voice loud enough to make a call to all schools and autism organizations, parents and autistic people, to include these discussions in the autism agenda; perhaps I can only hope some people will take what they need from this and many other posts written by autistic people. We need to come together to create this collective voice! Very often these policy documents are centred around therapy and services. Ethics, value, inclusion are sidelined by discussions about how to make the autistic person independent through therapy. I believe that a person-centred approach could be focussed more on these autistic rights and ethics discussions. The question is, why hasn’t it?

Rights is not necessarily (and most definitely not exclusively) about the right to therapy but the right to be autistic and included. In the meantime, since these rights are established (although not acknowledged for autistic people in Canada as we can see by our public institutions) we must do everything to provide access to communication tools beyond a PECS system. Autistic people are intelligent and the spectrum notion is highly misguided in terms of our understanding of people, yet it satisfies the need for a quick summary of autistic people for non-autistic people. We must also urge people to rid the notion that the autistic person will miraculously one day type clear thoughts or speak – it is unfair for the autistic people and supporters who toil to communicate. This is not to say that an autistic person will not come to speech later in life. Indeed Adam can talk the more he types but talking is different than typing. You can read up on that yourself. Not all autistic people will ever be able to talk even though they will be able to type (notice my assertion).

As many will attest who have learned to type, it’s a long and arduous process for both the typist and the supporter. Adam is now 12 and is just beginning to really express complicated things. We’ve been at it since he was 4, and we still have a ways to go. This is the kind of patience, perseverance and belief that all of us require to support the autistic person into adulthood. I know that Adam will go on in his education, so long as we can fight for the right for him to be classroom at either college or university. As Adam grows and learns now that he is out of autism classrooms, I can say safely that it’s not a matter of if, it’s a matter of when. This is also the case for his speaking up to the people in his life and about his own experiences as a person who has had to live with this autism label and all that it comes with. I am not underestimating the ongoing challenges that he will have to contend with, and how I will have to support him in this. I am often enraged by our culture that perpetuates despair for families instead of supporting them in making all of our “autistic lives” good and contented ones.

It takes a fight to avoid the pull of “experts” who will insist that your child has the “intelligence of a 5 year old,” or from the doctor who, after an 18 second observation will tell you that your child’s tics require psychotropic medication (the list goes on). For certain, every person’s situation is different and will require different supports, but the point is that too often we let the medical profession and the medicalized therapeutic professions do this to us and we all need more empowerment and support to critically think about what it is that prevents our children from being in a classroom to being out in the community with all kinds of people – not just fellow autistic ones. It is better to find someone who will spend time and listen with us, start with conservative approaches, and of course, put the rights of the child first. We must find each other for support along the way.

While I get fed up with the barrage of public opinion (indeed another flaw of modern culture that insists that individualism is associated with this free opinion) that suggest that independence is of utmost importance and the underlying prejudice (and thus barrier) that exists within that statement, I think that we have a lot more work to do. Sometimes we have to be brave in this and say it like it is.

The Hunt for Humanity? Some words for Ivan Semeniuk, Dr. Stephen Scherer and Dr. Mohammed Uddin

Filed Under (Discrimination, Eugenics) by Estee on 29-06-2014

I came by your article in Canada’s The Globe and Mail, The Hunt for Humanity, printed on June 21st, 2014, a little late. To recap for readers, you suggest that your project, Brainspan Atlas research at Toronto’s Sick Kids Hospital (Dr. Sherer works in Toronto and Brainspan Atlas is located in Seattle) explores the exons – the series of “segments” (including intons) that make up the human genome, are involved in human evolution. In this exploration, Dr. Uddin, a computational biologist and geneticist, sits to author the computer code comparing the relationship between “sequenced exons from thousands of apparently healthy individuals” (Semeniuk, Globe Article) and those with “mutations.” Dr. Uddin looked to Brainspan Atlas data on exons “that were rarely mutated but highly expressed during brain development” and “filtered out” to distill the genes suspected of having a connection to ASD candidates – finding some speculated connection between exons and these genes which both Uddin and Scherer now study.

Without delving into the “science” of their work, let us consider the premise, for few science writers will begin any article with a discussion of ethics and disability. Interesting because when we read articles in the Globe and other news sources, one can’t write an article about autism or disability and ethics, without getting some remark from a neuroscientist or geneticist (I am leaving the rest of this sentence for the reader to fill). No…Dr. Scherer believes in natural selection. He says, “natural selection has sculpted these genes by tweaking their expression in the brain” (Globe). Darwin’s theory, adopted by Sir Francis Galton in 1883 laid the groundwork for an entire movement that institutionalized and segregated many from society and was the basis for the eugenics movement which separated people by their supposed “genetic soundness.” This was also the premise by which the Nazi’s killed the sick, mentally handicapped, and the elderly (before the Jewish population). One need only a lesson in history, picking up original text from the period to compare the language used by Semeniuk, Scherer and Uddin to see that the people involved in this project may be treading too close to a history we must not repeat. Terms used throughout the article such as comparing autism as a mutation – using the binary of health versus mutation or worse not human (this was implied throughout) – are dangerous in that they sway, with their power of position, the general public to believe that autistic people are less than human. The entire article does more than insinuate that autistic people are not human.

Says another doctor cited in the article, Dr. Varki, “…the children of a mating between humans and Neanderthals may have been physically healthy but ‘cognitively sterile.’ The disadvantage of losing the uniquely human genetic package, even to a small degree, would have conveyed a tremendous cost in terms of social interaction and reduced their chances of reproductive success” (Globe article).

The language throughout the entire article (if you can get your hands on it as The Globe and Mail now has a subscription service online), it is rife with dangerous language. Autistic people are compared to “non human” species. But worse, as I find with many neurologists and “autism experts,” there is a gross lack of knowledge about autism from autistic people and the people who live every day with the label, and the challenges of being different than what is supposed to be “normal.” This was very apparent throughout and also at the end of the article when Semeniuk writes:

“For Dr. Uddin, who has grown increasingly aware of the burden carried by those with ASD since coming to Sick Kids, the payoff comes from watching his ideas and his number-crunching materialize into something that may improve lives…’These kids often don’t talk to anyone, or have any way to express their concerns,’ he says. ‘As a researcher, I want to help if I can. It’s us, as a society that has to come up with our own understanding of how to approach this.’

Along the way, the bonus prize may be the ability to see what it is that compels us to connect – to get inside each other’s heads – in a way that no other creatures seem to do” (Globe article).

I’ll assume, Ivan Semeniuk, you are meaning that only humans communicate, and those who do not are not human? Have you met autistic people? Have you talked with them? Have you connected with any of them or have you avoided contact (or insisted that it only happen on your own terms)?

I’m asking questions here that must be asked of everyone involved in this field. I’m often surprised at how experts haven’t met many autistic adults, or read their work. This seems to me to be a prerequisite if you state you are going to work in a field, that you get to everyone who has a stake in the outcomes of your work.

Can you see how my son is very social and just this past week, despite his struggle in forming words, has gone with his friends to the Science Centre, the farm, out to restaurants and has been happy in being with his mates? Have you seen an autistic person, Dr. Uddin, not be able to forms words well, but can express themselves with alternate communication? Have you seen an autistic person type cogent sentences at the same time making supposed inarticulate utterances? Have you investigated the actual fact that the two occur simultaneously? How important is rhythm and support to the ability to communicate and what must we all do to appreciate the many ways of being human (certainly not a natural selection theory). Mr. Semeniuk, I’d love to talk with you about research and critical theory on linguistic theory and what I call the language prejudice. This prejudice assumes that if you can’t speak, you don’t think or don’t understand, which of course is not true. It might provide a more well-rounded article on autism, ethics and the prejudice in society about autism that we all must avoid.

This, by the way, is a first draft, unedited. I am writing from my mind and most importantly, my heart as both a scholar in the field of critical disability studies and a mother. I look forward to dissecting genetic science (and your work) and the premise of discrimination.

If you want to read the article, The Globe now makes you pay for it.

The NRA, Mental Health Stigma, Blame, Services and the State

Filed Under (Activism, Disability Finances/Benefits, Discrimination, Government Services) by Estee on 19-01-2013

Do you need autism services? Here’s a thought on the NRA and their blaming (and stigmatizing) of people with “mental illness” (the term in and of itself is problematic). I strongly urge you (and applaud) Paul Applebaum’s response (he is from Columbia U). A psychiartrist himself, he notes that statistically, people with mental health issues are not inclined to violence. Yet, society seeks someone or something to blame and the NRA is leading the way.

On with my thought. If you have registered your child in autism services (think Adam Lanzer as I continue to write and that violence just a few weeks ago was blamed on autism) your child is on the state roster. If groups like the NRA succeed in having outside “experts,” who are never experts really, report to the state who is at risk of enacting violence, lots of bad things can happen to your child or adult family member with autism, as well as you as a parent. This is the complex situation with needing support for enablement versus how government support can turn against us.

Now on to more stigma and Margaret Wente of the Globe & Mail. First, why does she still have a job? On the cover of Globe T.O today is Chris Spence, the director of the Toronto District Board of Education who plagarized his speech. He was fired. Margaret Wente, also found out for plagarism, still has her opinion column job at The Globe. How do other hard-working journalists feel about her cheating? I for one have had enough of her naivete. She has written one too many comments on autism today in her foolish column on The Awful Truth About Being Single, mentioning that the only people who don’t mind being alone are autistic and asexual people. Another Wente blunder, not to mention a discriminatory remark that can further isolate people with autism who want to be social but find doing so with typical individuals often difficult. I think it’s time Ms. Wente get an education on disability rights and meets a lot of autistic people before she continues to write about things she doesn’t know anything about.

To end my little post today is a quote from the Court in the Granovsky decision:

“Exclusion and margainalization are generally not created by the invidiual with disabilities but are created by the economic and social environment and unfortunately, by the state itself.” (From Ena Chadha’s “The Social Phenomena of Handicapping” in Elizabeth Sheey’s Adding Feminism to the Law: The Contributions to Justice, Claire L’Heureux Dube, Toronto: Irwin Law, 2004)

Autism: The Target

Filed Under (Activism, Autism and The Media, Discrimination, Ethics, Media) by Estee on 17-12-2012

I have to tell you that I predicted the autism label would be used to describe the perpetrator Adam Lanza and the horrific shootings at Sandy Hook Elementary School. Before I proceed, let me please contribute my heart-felt condolences to everyone who has suffered by this, and who have lost their dear loved ones.

As I read through my Facebook page this evening, autistic people are frightened for themselves. When I hear of a crime like this, I hold my breath just waiting for someone to spill out the A-word. When I go to the doctor now, he says that when my son will become an adolescent he will become violent. A doctor?! This, my dear readers, is the level of ignorance most families experience. When we conflate violence with a type of person (race or gender) or disability is not only unethical – it’s dangerous to the welfare of autistic people.

We must work to differentiate “mental illness” with Aspergers or autism. Even that term is riddled with blame and stigma. I guess I have to say here that any person is capable of violence. You can be neurotypical and be violent. You can be anything or anyone and be violent. Violence is not a blanket trait of autism.

Our human history is laden with the criminalization and demonization of people with disabilities. When society fears something – be it environmental changes, our fears of what a fast-paced technological society is doing to humanity or now this (the increase of violence as characterizing the perpetrator as “isolated”) – we point the finger at autistic people. Autism is a human construction. It is a label made by people and its definitions keep changing over time. I will soon put a couple of essays here on this blog to show how autism as a construction has evolved in the twentieth century, and how we have had autistic people in our history (other authors have also written much more about this).

From the blog Left Brain/Right Brain, I copied this comment from the CBS story illustrating the prejudice that abounds. I urge you to read this blog post for more information on how autistic people are being stereotyped and targeted:

most people with Asperger’s can function normally in society”, this is a false statement! They cannot function normally! That is why they give the condition a name, as to differentiate them from the “normal” and accepted social behavioral. We have a large and growing population of people with these behavioral conditions that will hinder our public and social progress. I am afraid that we will continue to see these types of violent episodes, these conditions prevent the individual from using “reflective thought”, actions are sudden and instinctual, almost animal like. If you would like know more, go read a BOOK! don’t look it up on the internet, think for your self!

Again, please go to that blog and help to stand up against unethical reporting and mischaracterization of autistic people as violent people (CNN had been reporting that Lanza had Aspergers and then retracted it). I have many autistic friends and a loving child with the autism label. There are many more issues to discuss regarding gun control, the role of the media. Autistic people seem to be the moving target for everything. Please, let’s stop the shooting.

The Culture of Abuse?

Filed Under (Abuse, Discrimination) by Estee on 28-09-2012

This video from CNN, sadly, is just part of the abundance of abuse that autistic people face every day. While we watch the acts disclosed to us here, it is important to note this perverse normalcy of our culture of abuse and ask ourselves the question, to what extent are attitudes about autism contributing to systemic “sickness.” In other words, to what extent has neo-liberal society, the one that values independence under a capitalist system, promoted maltreatment and abuse? To that end, in what ways has “normal” society become sick? A few more reflections after you watch this:


In my critical disability studies, I discuss these issues alongside disabled people who have also experienced abuse. I also sit in classrooms where people who work within the systems, including Applied Behavioural Therapy (ABA) have listened to the accounts of inside operations. I’m so glad members of the ABA community, btw, are looking at autism education from a critical disability studies perspective.

By way of these first-person accounts, and by case studies such as Paul Cambridge’s The First Hit: a case study of the psychical abuse of people with learning disabilities and challenging behaviours (1999), it is clearly evident that caregiver service providers do not have a proper system for the protection of whistle-blowers; that the caregiving industry is vastly undertrained and underpaid. The service delivery system requires a major audit. Here a quote from a service provider:

“I was told to do the first hit and then it would be OK…X never expressed any feelings of liking for the people and had complete control over them. [this meaning the intimidation practice of the more seniored staff to the newer staff]. You weren’t allowed to show openly that you cared.” (Cambridge, 1999)….

“Newly-appointed staff were placed in difficult situations, where the risk of failure was high. They also often lacked the necessary competence or experience to perform essential care tasks well. Their abilities were then challenged and they were emotionally underminded by the principal alleged abuser, a practice that was sustained by other staff in the core group who had moved from the old institution.” (Cambridge, 1999).

In Toronto, we’ve heard of lots of abuse situations in residential living facilities. The scope of one blog post/reflection cannot encompass all the issues that are endemic/sick in our society that has laid the foundations for the way in which we employ, provide serivce and regard employment for clients with disabilities. If we do not value people with disabilities, we will not value the people who work within the service system which is an essential accommodation for the participation of many severely disabled people in our society. It is important to say here that I’m not at all excusing the individual acts of the abusers by stating it’s just a systemic problem!

We still sequester the severely disabled. We don’t want to see them. They provoke anxiety within us, and we rather turn away. Or, we’ll throw charitable money at “the problem” to temporarily make ourselves feel better. This is one side of the coin. What we need is a service system we can trust, and that values the disabled (among many other points I could make here).

The way we value (or don’t value) all members of our society is the linchpin of the future (bright or dismal) for pretty much all of us, not just the severely disabled. Consider that ability-disability is a continuum and that most of us will become disabled in our lifetime in one way or another (even ageing is in many ways a disabling condition), how are we supporting or even not supporting ourselves? Do we only think in terms of the individual — each one for himself? Or are are bodies not only part of this continnum but also permeable bodies, that is bodies that effect each other; responsible for and to each other?

Today, I broke down in tears, which happens often when I meet prejudice face-to-face. Adam’s regular doctor was not around to see him today. Adam was complaining that his ear hurt. Yet, he is terrified (and sensory defensive) of his ears being checked. Some doctors have more empathy and are better at getting Adam to agree to have his ears checked. Adam doesn’t love this doctor — his memory is vivid and we’ve seen this one before, and he seems a little more nervous around him than I’ve seen him around others. It’s important to note that he’s not a “bad man,” or anything of the sort that is so simplistic. This is to highlight the subtle nature of the prejudice and attitudes that paint “all” people with autism as one in the same. When I was there, I also wanted to discuss puberty and adolescence as I would if I had any other son. I received this response:

“Do you have any autsitic doctors?”

“I’ve seen everybody. I sort of know of everyone here in the field,” I responded a little disturbed, wondering where he was heading with the term “autistic doctors,” as if they proliferate the field as answers to everything autistic.

“Well, what we know about autistics when they go into adolescence is that they become violent and agressive. Like today. We had to hold Adam down today [to get his ears checked]. I can’t do that again. He could hurt me.”

I walked out, Adam in hand. When I got to the car, tears streamed. First, the doctor doesn’t even know Adam save for the petite bundle of nerves when Adam sees him. All he saw was Adam’s fear and resistance. Adam has never hurt anyone. Adam is kind-hearted, loving and happy, save for his anxiety and all that he must deal with in a world where normal is the top of the hierarchy. Adam will go through puberty like everyone else. I can’t predict what will happen, except that I know who he is. I know how I was and that I was as moody as shit. Somehow, I even seem to know in my heart that everything, up and down as it will go, will be okay.

I cried for the parents who don’t have the time to enter a disability studies program, or have the time to study philosophy or read about things or get in touch with other disabled people and their complex stories, although there are more access people and resources than there ever were, so I’m grateful for that. Autistic people are available, their books are also on the shelves, their blogs accessible to all of us. Some of them will empower, many of them caution. I thought, if I didn’t have my armour, what would I have made of that comment from a “medical expert” who actually knows less about autism than I do? I say that with confidence even though I stop at the point when I am fully aware I am not autistic and cannot appropriate the experience of being autistic in a highly prejudiced world.

To what end do bias and ignorance (lack of understanding and knowledged about people with autism that is dangerously over-generalized and misunderstood) espoused by some members of the medical community (and it is also important to note that not all of the medical community would say something so stupid), create a culture of abuse? After all, Mr. Doc gave me fair warning and can’t check Adam’s ears again…don’t get me started on how the disabled don’t get proper health care…

Reference (and I encourage you to find this one):

Cambridge, Paul (1999) The First Hit: a case study of the physical abuse of people with learning disabilities and challenging behaviours in a residential service, Disability & Society, 14:3 285-308.

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:

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.

Some Thoughts About The Various Ways of Being Excluded

Filed Under (Advocacy, Autism and The Media, Celebrity Advocacy, Communication, Contributions to Society, Critical Disability Studies, Discrimination, Inclusion, Parenting, Politics, Research) by Estee on 10-07-2012

I have a comment on comments, either in comment boxes or full blog posts about other writers and bloggers. Usually I won’t write about it, but I decided to write in my own defence. In so doing, I’ve had other thoughts about the various ways of being excluded, as either autistic people, or as autistic allies.

Recently, I did a self-search on Google. I am sad to say that I get used to disrespetful commenters who seem to create a narrative about me that is unfamiliar to me. I am also delighted, however, by comments that build upon a constructive dialogue about autism and disabiltiy and how we can remove the barriers for autistic individuals. I happen-stanced upon a post from 2008 about my blog — that mostly I “get it right,” but advocate for doing “nothing” for the autistic person.

If you’ve been reading my blog since 2005 I’ve done nothing but critically evaluate everything that Adam and I have come across in terms of therapy, education, autistic/social value, and opportunities, and the lack thereof. While the nature of blogs has changed since 2005, many of which have become syndicated journalism, I’ve kept mine in journal-mode, writing about my own growth and development as an autism parent to my beloved Adam.

Adam has been in “therapy” since he’s been 20 months of age and I have reams of notes and binders I have taken to create his programs, track his progress, develop his plans. I have created his programs along with other professionals that use ABA, RDI, Floortime and other methods. I have a decade of experience of autism education and various therapies, many of them dubious. I’ve witnessed improvements in the field where I continue to have a watchful eye. I predicted that we would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful not to be in a system that completely disregards him, but is set up more for him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.

ABA is something that we’ve had to contribute to improve upon because it’s really hard to change the system. To me it is in part a method and in part a label for a type of education that in some schools, uses other methods in addition to it. Adam and I have to “fit” into a mold and make it the best for him — those are our barriers and limitations for now. We work to fill in the gaps ourselves. I learned and taught Adam how to type…by myself — by reading, studying and consulting others who have other expertise to add. Now his school builds upon what I started. Recently, I was asked to write a book about it, and may do so after this year of finishing my M.A. in Critical Disability Studies. I have now five years of typed dialogues between Adam and myself, methods and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope it will become more mainstream. I am not alone in this among many autism parents. We make our own roads and other parents will share the work they’ve done.

We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all effected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.

It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which are so exclusive and politically limiting to us, we can understand the method, but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity. Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families — by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.

If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case,” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me).”Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] — for example, by not being as depressed as predicted — run the risk of being regarded as in a state of denial and in need of further psychological guidance and counselling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.

It has been challenging to write this blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publically lament in the same fashion as everyone else. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.

The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have to-date, been oppressive and exclusive agianst the disabled. Paul Hunt first challenged what we call today ‘abelism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).

The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)

- impairment: lacking part of all of a limb, or having a defective limb, organisim or mechanism of the body;

- disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).

This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability.(p. 30).

Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing other’s need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.

The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone — even someone who has no movement, no sensory function and who is going to die tomorrow — has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)

Reference:

Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.

Towards a New Autism Research

Filed Under (Ableism, Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism and The Media, Autistic Self Advocacy, Book Reviews, Communication, Computing/iPad, Critical Disability Studies, Development, Discrimination, Family, Movement Disturbance, Research, school, Sensory Differences, Transitions) by Estee on 06-07-2012

It doesn’t matter who you are, or how high you rise. One day you will get the call. The question is, how will you respond?” – African American U, Senior Administrator

Adam left for camp this morning. Last week, he did well at his piano recital. His lessons have been adapted for him — colour coding left and right hands, bass and treble clef lines, to give a sense of the many adaptations we’ve learned. Not only have we adapted lessons for him so that he may learn in “typical” ways, but I also asked the teacher to let him explore the piano on his own, as well as have her play for him. I became a musician when I was very young, and a neighbour let me bang away at the keys doing whatever I wanted.

I was proud that Adam was able to attend and play well at his recital. I asked that he make his little bow, and sure, everyone thought that was sweet. Afterwards, as there was another special needs person as part of the concert, I was noticing faces as he sang — his articulation was challenged. I didn’t see gleaming “ain’t that sweet” smiles. I saw strained faces. Not until the children who were fluent with well-pitched voices were singing did the “ain’t that adorable” look beam as high as the church rafters. That effected me a lot, and I pay attention to these subtleties every day. I don’t think people realize the subversive effects of a mere countenance. I, at least, read faces well. Adam seems to pick up on vibes, but that’s my assumption after knowing him for so long.

Last week, Adam was more verbal — asking me “what are you doing?” when I was at work at my desk and he wanted to play. In addition to a successful recital and these questions, we had a “good” week. Having Adam ask me a rare question is exciting. I am happy when he gets more verbal, types on his iPad, and now, starts to ask me questions. When the camp bus came for a visit last week and Adam got upset afterwards, he typed (independently), “why is bus going?” It shows that his world is expanding by his growing ability to communicate. I find myself relieved because I think it will make his life more fulfilling, if not easier in a world that favours the able-bodied and the fluently verbal.

Two days after his verbal “spike,” however, something that comes and goes but improves steadily all the time (akin to a graph with a steady climb overall, but with monthly plateaus and slight dips), and also possibly correlating to the end of school, the transition to camp, a possible cold or allergies (get the picture?), Adam began to twitch more and he lost his ability to talk for a couple of days. He is better at being able to type a few words when he is under stress. He couldn’t do that at all before.

While I still worry, mostly if I see him uncomfortable when it happens, I’m getting better at waiting him out. Whatever is effecting him needs to be processed by him in his own way. Within a couple of days, although the twitching slowly abated. He started to smile and become more verbal after a couple of days of the most intense part of it. I really do not understand what is happening to him neurologically and neither does anyone else. Only some autistic people can give me a sense of it. There is no guru or expert or scientist who has truly “discovered” what causes Adam to tic and twitch the way he does. We know of similarities in other disabilities. Adam was tested for seizures and at least on the day he was tested, it showed negative. These are but some of the things we don’t fully understand about Adam and what we refer to as his autism.

As his mother, I’m well aware of my bias, in spite of my enduring “acceptance” of him. Bias and ideas are so deep-rooted in us that acceptance is something we have to work on every day. (Boy, would I love to read that caveat in someone’s research paper on autism). As Adam’s mother, I realize that although I love him dearly and accept him as he is, it is still difficult to resist the temptation to praise Adam’s “normal” feats and accomplishments only, and not recognize his autistic ones. Like all of us, we are under such a strong ableist or “normalist” influence that we don’t praise, cite, recognize autistic-ness as often as we need to.

We need so much more of a new kind of autism research — one that captures autistic accomplishment without sensationalizing autism. Too often any achievement by an autistic individual gets refered to as “genius.” While in some cases in may be extraordinary, we do this because we are still not looking at autism as a whole in the way we should look at all of humanity. We fracture autism into little bits and pieces as much as we end up doing people.

When I attended Autreat too long ago now (I am due for a revisit), I purchased fifteen years of workshop notes and presentations. I remember when I attended being giddy that there were workshops for autistic kids on how to make their own stim toys. Autreat, founded by Jim Sinclair, who is also autistic, is run by and for autistic people.

For months now since he started in an autism school especiallly, despite my praise of Adam for his feats, I still wonder how I can nurture his autistic-self. So I went downstairs and dug the old material up. Here’s a clue of what I wish to study more about:

How to Play With Dolls: For Kids and Adults Jim Sinclair, disability educator and consultant, coordinator of Autism Network International

For purposes of this workshop, a “doll” may be any inanimate object that we play with by imagining it to have aspects of personhood. This includes the traditional toy-human type of doll, as well as toy animals, and any other toys or objects that our imaginations transform into living entities. In this intergenerational workshop, we will share and explore different ways that autistic people can use doll play for fun and for learning, and ways that parents, educators, and therapists can use doll play to help autistic people in developing skills and understanding…”

Music: What Is It, What Does It Mean To Us, and How Can We Use It?
Katja Gottschewski, musician and music therapist, Bodo, Norway

In this workshop, we will explore different aspects of music. We will look at differences and similarities in how we as individuals or as AC’s and NT’s [autistics and neurotypicals] define and experience music. It will be discussed how we can communicate through music. How is music different than language? Can music be a bridge between AC’s and NT’s?

Understanding How Plants Can Facilitate Connection in Autistic Children and Adults
George Salamunec, HTR, COTA/L, Certified Master Gardener, Susan Golubock, M.Ed., OTR/L
Autreat 2004

Working with, and understanding about, plants can be an effective tool for developing the senses, reducing stress, and learning to make new connections in autistic children and adults. Matching plants to one’s personality and needs is an important first step. Plants provide opportunities for autistic children to explore life, nurturing, modulation, non aggressive options and choices for dealing with natural adversities, and why learning about other life (and people) outside of ourselves is so important…

Making Employment Fit: Accommodations and Other Dirty Words
Joel Smith, Autreat 2004

Employment is difficult for many autistic people. We are square pegs who dont fit nicely into round holes. Rather than forcing the autistic into a job, would it be possible to change the job to better fit the autistic? In this presentation, ideas and real-life examples are presented of how jobs can be modified to best accommodate autistic sensitivities. We will also discuss how to modify your job without alientating your boss and co-workers.

That was from Autreat 2000 and 2004. Twelve years later, I am concerned (especially after attending IMFAR), how we hardly research autistic ways of being. We usually do it framed in a bias — comparative research against the “normal,” population.

We really don’t value what makes up the true and different, “not less,” accomplishments of the autistic person. I’ve read blogs where “experts” bluntly claim that there is “no value” in lining objects up. I’m not going to target the scientist specifically here, but I wonder how many readers of this may have at one time or another thought the same thing? Other than people like Temple Grandin, how can we all study the value of object-organization and how that is transferable into learning at school and later, in the workplace? I don’t think this is a trivial skill that needs to be solely relegated to the OCD side of the human column.

Just because we don’t see the value doesn’t mean it ain’t there. We don’t understand. We are viewing under a comparative, normal versus abnormal one, and that’s so limiting. While I try to make the “least dangerous assumption,” a term first coined by Dr. Anne Donnellan, I realize that I must work to continue to see Adam for who he is in all contexts. It’s a absolute daily task and obligation of mine as his parent. I wake up every morning thinking about this, more than I pander to alarmism. In fact, next time an autism commercial brings you to tears, please ask what buttons are being pressed and why, and if there’s a better way to achieve a quality of life for us all?

I’m also reading Anne Donnellan and Martha Leary’s newly released book Autism: Sensory-Movement Difference and Diversity and I would highly recommend it. I liked especially this example:

According to Oliver Sack’s book, Seeing Voices, in learning sign in infancy he will develop brain patterns remarkably different from his ‘normal’ peers. And he will continue to develop in different ways, but we can in no way call those differences ‘deficiencies.’ He will develop different social and cultural skills. If given the most standardized IQ tests, even with a signing interpreter, he will perform differently, and possibly less well, than his speaking/hearing peers. On tests that tap the developmental experiences of deaf people he would probably score far higher than his hearing friends. Yet it is no surprise but nonetheless sad to learn that for decades deaf children were routinely diagnosed as mentally retarded. Still today, they are often considered to have diminished capacity relative to their hearing peers, even when we clearly know that they can flourish if given the appropriate education and experiences. (p. 33).

Consider that, for the deaf which we think we’ve come, arguably, to understand and accept, of how far behind we are in autism to apply this level of consideration. Think how far behind! Thankfully, a small pool (and I hope a growing one) of researchers are taking up this call. In Steven Kapp’s (et al) paper Deficit, Difference of Both? Autism and Neurodiversity, there is also a call to discover the state of autism acceptance and “potential areas of common ground in research and practice regarding [how] autism [is] discussed.”

Scientists, working with the community, can help stakeholders with competing agendas make informed choices between rights, responsibilities, and needs at personal, social, and political levels by affirming that diverse societies respect multiple perspectives.

I’d like to see us all work towards the question of how to nurture autistic strengths and learning and balancing the real need to cope in this world as a minority, as well as continuing to value autistic contribution and being in society.

A Whole Better World
Autreat, May 2000,
Clay Adams

I can imagine a whole better world,
Where people don’t laugh at each other’s pain
A world where the sun shines on every one
And one’s well-being is everyone’s gain

Must we, in fact, feed off each other?
Fool the unwary, to sell our wares?

Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

We Are Still a “Burden”

Filed Under (Acceptance, Advocacy, Discrimination, Inclusion, school) by Estee on 25-11-2011

(Photo Inset: Danvers State Mental Hosptial, Danvers Massachusetts. Credit: Ayslum: Inside The Closed World of State Mental Hospitals, MIT Press, 2009.)

“Autism is a growing burden on society in Ontario,” said Steve Hudson, co-chair of the Spectrum of Hope Autism Foundation. Mr. Hudson is promoting the Kae Martin Centre, a place that will house autism research and life-skill teaching under one roof. I kindly ask for an apology from Mr. Hudson for his unfortunate use of language.

As for the Centre, in one respect, it always sounds like it could be a relief — there are very few programs that adequately teach, or even recognize, autistic strength. On the other hand, when I read in our national newspaper, The Globe and Mail, that autistics must have a place to be sequestered to “learn how to cook,” shivers run up and down my spine. My son, and many others like him, can do more than learn how to cook.

There’s nothing wrong with learning to cook, or being a cook, of course. It is wonderful that there are places being created to learn the skills that autistic people need to learn. But in autism we do know that continued, or Life Long Learning is a must in the making of an autistic life and education. There’s nothing wrong with that, either. In my forties, I returned to university for my M.A. and I’ve been taking courses, and will, all of my life.

Autistic people and their families want to be a part of the community. Autistic people wish to receive accommodation and recognition as whole, valuable human beings. As soon as people present with a disability, odd behaviour, we automatically think of them as aberrant.

I can’t believe sometimes that I still have to write posts like this. I keep hoping that “autism advocates” will actually become educated by listening to the autstic population around the world, many of whom are considered “severely autistic,” but have learned to socialize and communicate by typing, for instance. I am so despondent, admittedly, when I hear that the use of terms like “burden” are ways to appeal for money. What about accomplishment? What about the many autistic individuals who contribute right now? Could we be achieving more for our autistic children, young and old?

We are so behind other disabilities that were once viewed the same way — children were segregated, treated as dumb, assessed as unable to contribute anything to society. Later, such as in the recent HBO Journey Into Dyslexia, these same “children” are now talking about how their disability has advanced society itself. Many of our technologies that we use and take for granted today, were invented for individuals with communication disabilities.

As I read the article, the first thing that came to mind was what kind of research would be housed under one roof? Will it be to understand autistic thinking, processing and ability? How to teach the autistic person? Or are the same founders duped by the ABA is the only scientifcally proven therapy for autism myth? It is not scientifically proven. It simply has the most scientific research behind it. as Jonathan Adler states in his recent book, Challenging the Myths of Autism, “the most evidence does not mean the only evidence.”

I have to be honest. I have mixed feelings of putting Adam in an ABA school. Sure, everyone is nice and so far it’s eclectic, so for us it’s the best out there. Even writing about this, and I feel I put ourselves at risk for displacement where there is really no where else to go. Yet, I have to be honest in hopes for more services for us and every other autistic family out there. I think a civil dialogue about the issues pertaining to autism and their therapies and education is the best way to progress. I do this with Adam’s current school and it’s going very well. I also see that Adam is calmer and happier there. The staff is friendly and organized and have been so helpful to me. I do wonder if there is far too much time be wasted on baseline protocol — testing things Adam has known for years, and I worry about falling more behind. It’s too soon to tell and I’ll report back. From the other point of view, Adam has to get more “fluent,” and I don’t disagree that practice is important for Adam. It is my opinion that Adam’s disability is not fully taken into account by all schools, ABA or not — his catatonic-like movement and inconsitency. This school that I have Adam registered in, however, does teach him what I want them to, like literacy and typing, but of course everything in ABA becomes operationalized. All other methods tend to become ABA methods, even though they didn’t start off that way. What an autism school can do for him right now, where there is such a lack in Ontario, is provide him with better understanding and structure. They also have the ability to help us with some of the more challenging behaviour that arises from time-to-time, and seem to treat Adam with respect for his anxiety. What I am trying to say is that many methods matter and have to be included in the curriculum and in some settings I see this being incorporated more. I am always sending emails about understanding Adam’s behaviour and treating him with respect. I often wonder when people will become sick of me. But I cannot stop. There is a part of me that knows that we all have to work with what’s already out there.

Throwing him into a school with others where there was no such understanding and for Inclusion sake, didn’t work for Adam at this point in time. His current school is willing to deal with what I want for Adam, while making other suggestions and I’m willing to give it a try now that he is older and the method could be more suitable to him. Overall, though, an IEP for an autstic child must include life skills, academics, communication and social skills training, among so many other things. Adam is lucky to have all this and we are always asking questions about priorities and balance. Each autistic child’s needs are very different. What I want is for Adam to be accommodated for these needs in all settings. Adam enjoys his peers, but peers are not taught to accept Adam after a certain age. Adam isn’t viewed in these settings as someone who can contribute. He’s viewed as someone who needs extra help. That someone who needs extra help is viewed as the burden. So I’m worried just about every day. I want Adam to be safe, happy and learning. He wants to be out of the house and with others and he typed a couple of weeks ago “I want friends.” How do I ensure that he is being included in society, programs, and where he also wishes to be? How do I ensure he doesn’t become so bored (because he has a curious mind), because he can’t respond consistently? It tears me apart.

So when I hear of Autism Centres, I get a mixed reactions. I want Adam out and about safely, and he comes out and about when he’s with me every weekend. I get queasy that Centres, and the lack of enforcement of Inclusion Policy in Canada, will continue to force us away from our community, and we become more isolated. I spend hours trying to find activities for Adam where is is happily included with an aide, but it seems to be getting more difficult. My mind is haunted by images of insitutions, even though the last one was closed in Canada in 1972.

We tend to think of mental hospitals as snake pits, hells of chaos and misery, squalor and brutality,” says Oliver Sacks in his introduction to Asylum: Inside the Closed World of State Mental Hospitals. “Most of them, now, are shattered and abandoned — and we think with a shiver of the terror of those who once found themselves confined to such places.”

“Like so many lofty ideals, the asylums failed to live up to their expectations.” Asylums were supposed to be places where disabled and mentally “ill” individuals could learn life skills, do art, create community. We all know what happened to these facilities and the levels of abuse inside of them.

I dream of autism schools somedays, ones that are as well revered as schools for gifted children (as many of our children, once they can start typing can end up there). I dream of Adam being included safely and accommodated in a public school where he is accepted and respected. I dream of people talking of autstic ability seriously as part of autism, not as an anechdote to autism, for that’s just another way of writing autistic people off. On the other hand, I am worried sick about the fate of Adam and where I place him every day. Is he really learning enough, to his abilities? Or are his deficits the only thing that will ever be the target in his IEP? How much time in a day does this single mother have to defend, program and place him?

I want to be happy about a new place where Adam is viewed as someone who can make it, who will contribute, who is intelligent. I have a dream. I know that typical people don’t think they need to care about us or where we will end up. Yet if you really think about it, it is our greatest lesson in the study of humanity. Our growing disabled population challenge our views and the way we treat others. In the words of Michel Berube, of the popular memoir about his son with Down syndrome Life As We Know It: A Father, A Family, An Exceptional Child, writes in his introduction to Simi Linton’s Claiming Disability: Knowledge and Identity about the field of Critical Disability Studies: “I now believe that my resistance to disability studies is a piece with a larger and more insidious cultural form of resistance whereby nondisabled people find it difficult or undesirable to imagine that disability law is central to civil rights legistation…as Simi Linton shows us [Critical Disability Studies] should be central to what we do in the humanities. And perhaps, just perhaps, if disability is understood as central to the humanities, it will evenutally be understood as central to humanity.”

The weight of our morals and ethics about how we treat and regard autistic people may be our real burden. So I guess I’m back at the blog, here, defending our right to be smack dab in the middle of our wonderful city, hoping for Centres and schools that will celebrate the lives of autistic people, their strengths, ability and potential. All I can ask, is to please see us as fully whole, not broken, human beings.

Why Every Minute Is Not Therapy (or a short case for why it shouldn’t be)

Filed Under (Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Contributions to Society, Critical Disability Studies, Discrimination, Inclusion, Research) by Estee on 08-09-2011

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

Autistic Girl Taken By Province

Filed Under (Activism, Discrimination, Wandering) by Estee on 08-07-2011

Please read Kristina’s and help return Ayn, an autistic girl to her father. They live in British Columbia. Ayn has been taken because of wandering.

Like Ayn, Adam is nine years old and has bolted. We work so hard to take care of and nuture our children and Foster Care is a devastating option. Ayn’s father Derek fears that Ayn is being drugged to sedate her. It may take up to a year to get Ayn back, states Derek’s laywer. Let me describe why I believe this is discrimination against autistics and their families.

As a parent of an autistic child who clearly is anxious about the world about him, which lends to wandering and other behaviours as I’ve observed, I can think of no other person on this planet more equipped to protect my son than myself and his immediate family. We live in a world that wants to make Adam “normal.” He must go to school, and when he goes, he has to exert more energy than other children just to cope. Because Adam is barely verbal, but otherwise very bright, he cannot speak out. Instead, he reacts.

Our schools, while they attempt to accommodate, simply have not been making the grade. As I’ve researched school options and program options in Ontario, our options are few and far between. Every program seeks to normalize Adam. Precious few wish to spend the time it takes to see his abilities and build upon them.

This requires systemic change and a real listening to and understanding of autistic people. May I ask what schools hire autistic adults to work with autistic children in the classroom or consult on school boards for autism programs? Please, write if you know of one here in Ontario. Instead, non autistic educators believe they know better — they believe they know how to teach autistic people. Even we parents sometimes think we know better. It takes us out of our comfort zone to be patient with an autistic nature. Think about the patience and effort that people like Ayn and Adam have to produce in dealing with ours? Sure the toolbox of methods work here and there, but what is happening to our children, to Derek and Ayn, is not an accommodation. This is what we seek. Understanding, accommodation — not separating us from the people we love.

Every single day, Adam and I face these challenges together. We fight for better services, be they ABA or AAC and for all kinds of acccommodations that help autistic people contribute to society as autistic people. I know we are not always listened to. We are not heard. No one believes it’s a good thing, perhaps, to be autistic. Few want to bother because autism is seen as our contemporary problem. If we can’t fix the problem, we have failed. I say we are failing autistic people.

Must we also live in fear, like Derek, of our children being taken away? As parents, we cannot control everything that our children do, or what happens to them. This is true of all children, not just autistic children. Being autistic seems to be a reason to discriminate against us.

As Adam himself goes through many changes in his life (we’ve been checking off the list of “life’s top stressors”), I’ve been re-reading Temple Grandin’s book Emergence: Labeled Autistic. She describes similar behaviours to Adam like fixations with doors, difficulty with communication or inconsistent communication. She describes her twitches (like Adam’s) as “panic attacks” or anxiety.

While I’m processing a lot of this lately because we are in the midst of this ourselves, I see an urgent need for others to understand us. I see a need to reduce some of the expecations, and for calm environments. I see a need to simplify our lives and let things be sometimes. We are so busy dealing with what our kids must or should do, that I truly believe that this only brings on more stress. Every morning when I wake, I wonder how we can simplify our lives, and wonder why it seems to be ever more complicated. This is the commitment many of us parents of autistic children make every day: to stand by our children and fight for their rights to be included in our society, not taken away or segregated.

Every autistic adult who has written a book discusses their panic at this over-stimulated world we live in. Donna Williams, Temple Grandin are really accessible reads.

Let me take some quotes from Temple’s book that may help describe what I call now the “flight response” of Adam, and perhaps children like Ayn. I know there is no scientific evidence to support my theory yet, but I really suspect that wandering and fleeing in many cases has a lot to do with this anxiety:

“The real world became more unpredictable. I longed for relief, but I was trapped in physical distress. Stress showed in my speech, my actions, my relationship with others.”

Adam’s bolting is associated with doors recently. He is fixated on them and has to check what’s behind each. This has calmed a bit since the end of school, but when he’s anxious it can start up again and this is how he can suddenly disappear, even if we hold his hand — he can slip out so fast. Yes, our house has locks from the inside, like Derek’s. I’ve bought I.D. for him, even a harness (which we have not yet used, but it’s here just in case), and we are looking into a GPS. We have programs and social stories and are trying to help Adam in every way we can with his stress. Re-reading Temple’s own accounts, seems to have re-affirmed my suspicions about Adam, and helps me to consider various options for him to grow and develop as a fulfilled autistic individual:

Then, in chapel one Sunday, I sat on the folding chair, imprisoned by the school’s rules of attendance and bored…bored…bored. When the minister began preaching, I escaped into my inner world of non-stimulation. A world pastel and peaceful. Suddenly, a loud knock intruded upon my inner world. Startled, I looked up and saw the minister rap on the lecturn. “Knock,” he said, “and He will answer.”

Who, I wondered. I sat up straighter.

“I am the door: by me if any man enter in, he shalle be saved (John 10:7.9). The minister stepped out from behind the lecturn and stood in front of the congregation. He said, “Before each of you there is a door opening into heaven. Open it and be saved.” He turned and walked back to the lecturn. “Hymn 306, ‘Bless This House.’”

I barely heard the hymn number. Like many autistic children, everything was literal to me. My mind centered on one thing. Door. A door opening to heaven. A door through which I could pass and be saved! The voices sang out and when I heard the words, “Bless this door that it may prove/Ever open to joy and love,” I knew I had to find that door.

For the next few days I viewed each door as a possible opening to love and joy. The closet door, the bathroom door, the front door, the stable door — all were scrutinized and rejected as the door. Then one day walking back to my room from dinner, I noticed that an addition to our dorm was being constructed…I climbed to the fourth floor….And there was the door! It was a little open door that opened out onto the roof….A feeling of relief flooded over me.

Ayn wandered to a yard with a trampoline. Adam returned to the church from where he escaped…through doors and then back inside them again. While wandering is a very serious issue, are our children seeking their escape? Are they seeking relief? Joy? We must keep our children safe, and I can attest that we are doing everything in our power to do so, like Ayn’s father, Derek, who loves his daughter so very much. But because Ayn is autistic, and perhaps because Derek is on social assistance, she has been taken away from him. Is this some sort of sick cost-saving measure instead of providing the services that Derek and Ayn might need? I can imagine the pain he and Ayn must be feeling right now.

Our society must work so much harder to understand what we as parents face and what autistic people face. We must be able to share our challenges in order to survive them, without fear that our children will be taken from us. I want to be proud of the country I live in in how it supports autistic individuals and families. This incident does not make me proud, or rest easy.

Let me share one more quote from Temple Grandin, lest society think that autistics can’t understand what’s happening to them:

As an autistic child, difficulty in speaking was one of my greatest problems. Although I could understand everything people said, my responses were limited. I’d try, but most of the time no spoken words came. It was similar to stuttering; the words just wouldn’t come out…”

and,

Too many therapists and psychologically-trained people believe that if a child is allowed to indulge his fixations, irreparable harm will result. I do not think this is true in all cases. Fixations can be guided into something constructive. Talking the fixation away can be unwise. Just as a bad habit is expunged only to be replaced by another bad habit, so it is with fixation. But making a positive action out of a fixation can be rewarding.

Maybe Ayn needs that trampoline. Maybe a neighbour can give her that access. Social services should give Ayn back to her father as soon as possible. Parents and autistic people need accommodation and better supports. Foster care will not give Ayn many options and will likely create irreparable damage. Ayn is a person-first and a very lovely little autistic girl, I might add. This is the stuff that makes being a parent of an autistic child, challenging. Let me reiterate: we need understanding and support. Not punishment.

Please sign this petition to help bring Ayn home.

Autistic Wandering and the DSM

Filed Under (Activism, autism, Autism Spectrum and Diagnosis, Discrimination) by Estee on 04-04-2011

Recently, the CDC proposed a separate criteria for wandering in autism. You can find the PDF here. I have received permission from the Autism National Committee (AUTCOM) to make this letter available to readers in response to the proposal:

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that CDC’s bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to reconsider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,
Autistic Self Advocacy Network
Council of Parent Attorneys and Advocates (COPAA)
National Association of State Directors of Developmental Disability Services (NASDDDS)
TASH

If you wish to respond, please contact AUTCOM or circulate this letter.

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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.