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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, March 14, 2007

 

Rebuilding the Autism Foundation


Many readers of my blog will understand that I am committed to finding acceptance for autistic people and a deeper understanding of autism that achieves education and accommodations for children and opportunities for autistic adults. I hope that we can build the bridges that support autistic people everywhere.

While I strongly believe we should celebrate autism in many ways, it is also necessary to discuss why something is inherently wrong. There is such a thing as right and wrong here, and we have to uncover it. By attempting to make something like a treatment “savory” or workable because it seems okay in some ways, may not necessarily make it ethical. Margaret Somerville, ethics and law professor at McGill University and author of The Ethical Imagination, acknowledges a type of situational ethics, where she notes that epigenics – the study of the interaction between genes and the environment, may modify each other. So while it is becoming difficult with that in mind to “draw the line,” she says, “what is or is not natural is not simply the matter of an end result, but involves how that end result came about – in particular, whether there was human intervention that gave rise to it, and whether the intent of that intervention was to achieve a particular result.” In sum - with the negative marketing of autism as a fate worse than cancer, even though autism is a disability not an illness, discussing our children in pejorative terms in public, or for the purposes of obtaining public funding, and with interventions to render the child “indistinguishable” from others – does the end justify the means? Even if one has the best intentions to “accept autism,” as is now the becoming the case in the rhetoric of autism organizations, does the means of “correcting,” “curing” or “remediating” autistics, ethical? Perhaps we need to use Somerville’s ethical analysis as our guide in autism; that by determining our intent in autism, we come to a conclusion of how to regard and treat autistic individuals in science and in society.

In many instances, I like to illustrate the many manifestations of autistic discrimination – from treatment, attitude and access, to marketing by some autism charities. If we don’t begin to understand the many facets of discrimination, we can’t do anything about it. We cannot improve upon the education our children deserve. A commitment to celebrate difference, to call autistic people a joy, is a peaceful means to express how much our autistic members of society, our children, mean to us. In the midst of adversity, we continue to “sing,” as it were. Elie Wiesel, Nobel Laureate, Holocaust survivor, author, human rights activist, and recently knighted, alluded to “singing” and being “joyful” in the midst of adversity in order to maintain one’s sense of self, and community. In short, we celebrate life, all life, because it is so very fragile. He said in a speech in Toronto, “we Jews… we dance.” That has a lot of meaning in the Jewish community which is constantly surrounded by intolerance.

The purpose of calling this blog The Joy of Autism is the same. It is a means to uphold and protect the human spirit, namely, the spirit of autistic individuals as valuable members of society. If, as Hubert Humphrey said, that the measure of a society is how it treats its most vulnerable citizens, can we honestly say that we treat our disabled members with the same honour and dignity we would ourselves? Many find inherent problems in Humphrey’s statement, as it suggests that the handicapped live in the “shadows of life,” but there is some wisdom in the statement itself, aside from the man’s beliefs or convictions. How might we extend our understanding of acting morally and ethically in light of the autistic and other disabled communities who are involved in self-advocacy?

A couple of years ago, my husband and I built a new house. I took over the project until Adam was diagnosed with autism between eighteen and nineteen months of age. By February 2004, while we started “treatments” for autism because that’s what we were told to do when we were first introduced to this community. At the same time, I visited the building site. I noticed honeycombs in the walls and cracks in the foundation everywhere. The air was freezing – an inhospitable environment to building in the first place. At the time I thought this was a bitter irony, like my life, and now my house, were both “falling apart.” I was concerned about the foundation despite my builder assuring me that everything would be okay, so I hired a inspector. Sure enough, the foundation was irreparable and had to be torn down, so I’m glad I trusted what I could SEE rather than what I was TOLD by a building “expert.” We had to start building all over again. In retrospect, it wasn’t so bad, even though it seemed like a catastrophe at the time. It set us back a mere six months. We replaced our builder, and now we have a stable home. I was really glad I caught the problems so we could build properly and live in a structure that isn’t wrought with problems that require constant fixing. That would be upsetting, exhausting, and costly.

The reason why I have to talk about ABA and certain remediations or “treatments,” is because they are built on a premise that we have come to recognize as discriminatory. Perhaps we did not recognize it at the time, when we weren’t as publicly aware of autism, but the issues have persisted for a long time in the area of all disabilities – this idea of “treating” as opposed to “accommodating.” Since we have become very aware of autism since the early 1990’s, we have come to learn that autism was built upon a foundation of wabbly assumptions and we have erected the walls and supports that were based on them. Now that the “house” is nearly complete, while in the meantime we have come to learn about autistic dignity, intelligence and Personhood. We can now discuss the ethics of “treating” people and how that reflects in the way we regard autism and autistic individuals. Autism “rights”is built upon another strong disability rights movement gaining momentum in universities around the world: disability studies departments are viewing disability and autism from various cultural and ethical frameworks. Based on what we continue to learn from autistic self-advocates and other disabled individuals who speak out against the behavioural and medical “treatments” they were once subjected to, should we stop construction?

Some insist on building upon these existing shaky foundations. We want to decorate nicely and put in the windows and an expensive roof, despite the fact that we have crooked walls. We keep hearing about some new “trend” in autism treatment, some new operationalized method. As such, we keep failing – there is a falling wall here, a leaky ceiling there. In order to stop the patchwork at the cost of continually having to repair, we have to consider the foundations that we’ve built our assumptions about autism, and the ways we have come to “treat” it. We may have to consider tearing down the house and rebuilding. It may seem exhausting, but it’s necessary. Is this merely another painstaking step in our evolution of understanding disability? Is it an evolutionary progression to viewing and assisting the disAbled, and autism as part of the larger disability community, with their assistance?

Re-reading many of the early books on autism, I am able to recognize bias in science and the diagnostic manual itself. This might be considered the primary basis for the manifestation of discrimination in autism – a foundation where individuals with a certain difference were then generalized and classified in terms of deficits by Hans Asperger and Leo Kanner in 1943.

Ralph Savarese, author of Reasonable People: A Memoir of Autism and Adoption captures the problem in the introduction to his book. He notes that "in the 1970’s Beate Hermeline and Neil O’Connor, both cognitive psychologists, focused on the mental structure of autism in a systematic way. Along with Lorna Wing, they note the “core problem” being the triad of “impairments”: the impairment of social interaction, impairment of verbal and non verbal communication, and impairment of play and imaginative activities." (Savarese)

Savarese, in the following paragraph, proceeds with introducing the American Psychiatric Association’s current definition of autism in the DSM IV, which follows and expands on the lists of “impairments.” He says, “it isn’t difficult to see how this definition derives from the portrait that Wing and others have sketched – over and over, I might add, as if themselves autistic. In short, the reigning view posts a devastating global disorder that robs people with autism of their very humanity. Moreover, it offers little hope of treatment but for modest behaviour modification. No wonder parents of autistic children panic when receiving a diagnosis.” (Savarese)

No wonder. Yet it need not be so. It is possible to view autism more fairly, taking the view from autistic and other disabled individuals into account. It is possible to value disabled individuals and protect their right to accomdoations, and to protect their dignity.

An Autism Apartheid

What makes autism “advocacy” so problematic is that we have inversions of truth. These inversions are pernicious as they stake claim for “equal rights” for autistics in these “treatments’ based on impairments and deviance from the “norm.” We have organizations that “fight for autism” but under further investigation and in the context of the larger autism community – in other words, autistic individuals and parents who represent their children’s right to be autistic– we can see that “equal rights” for one group does not automatically equal an ethical response to the treatment of autistic individuals they are “advocating” for. President Ahmadinejad of Iran is calling for the destruction of Israel under the same rhetorical premise. Does this make Iran ethical or right? We witness such inversions of truth or of rhetoric all the time for nefarious causes.

When one specific treatment is promoted for autism, which continues to segregate and identify children in terms of their deficits, when we do this to the non autistic population, we are witnessing an apartheid. In fact, we are witnessing it more in autism today than many other diabilities. When it is suggested that special needs children be screened before being allowed into schools because they are viewed as potentially dangerous, as stated in The Boston Globe last month in the article: A Clash of Rights in Education, we are witnessing an apartheid. No other society which represents its “people” advocate for the fundamental change to personhood or autistic-hood. Conversely, the Downs Syndrome Society of Canada celebrates and promotes the dignity of the Downs community. They advocate for their rights, in employment and acceptance of them in society overall. Sadly, despite such advocacy, we have a ways to go as over 80% of Downs Syndrome fetus’ are aborted in Canada. It reflects that society still understands very little about living with disability. The current understanding is still overwhelmingly negative.

People with the difference are often born to families without the difference. This can be seen in deaf children born to hearing parents and the complications that arise. View The Sound and The Fury for an example of the virulent debates in this community. It should be stated, however, that with current research in genetics, the familial link to autism is strong. I have autistic members in my own family, although we didn’t know what autism was at the time. Further checking into family members can help in developing a greater empathy towards the newly diagnosed child. Many Aspergers/Autistic parents are especially understanding and supportive of their autistic children, and much more able to understand behaviours and needs. Such observations have lead me to believe that we need many more autistic individuals who are willing, to teach other autistic children in integrative settings.

Many organizations and individuals have recognized the fundamental problems of referring to a people as a deviance from the “norm” as opposed to assisting individuals in society who have a fundamental difference. Such referencing is akin to political apartheid because it begins to single out a group of people and apply a different set of standards to them. Here, the difference between accommodations versus subjecting autistics to treatments is an example of a prejudiced standard, as Professor Emeritus Bernard Lewis of Princeton University noted in the PBS documentary Anti Semitism in the 21st Century.” He was referring to how prejudice is “tolerated.” I argue that prejudice towards our disabled communities is tolerated because we still do not value and understand disability as much as we could. At most levels of government, advocacy, reference groups, and autism societies around the world, this kind of singling out and segregation is rampant. ABA politics has “hijacked the autism agenda,” as stated in an Autism Society of Ontario paper written by Doug Reynolds -- no other voice or opinion contrary to them is allowed to be heard. But is this an ethical way to discuss the issues surrounding autism treatment and autistic people – without opening the table to a diverse group of autistics and other individuals like myself involved in autism? Is there a way to repair the damage to autistic individuals in addition to assisting the parents who currently “struggle” with their very own autistic children because they continue to walk under the umbrella of such devastating rhetoric?

Autism advocacy groups for ABA specifically have unanimously decided that autistics do not have a place at the table of autism advocacy, because it doesn’t further their cause for funding supports. They want ABA to be funded an nothing else. Autistic individuals have indeed complicated the process for obtaining funding for ABA services, but for good reason as it has ethical problems and further does not provide the accommodations necessary for a diverse population of autistic individuals. There are parents like myself who want a better world for our children, want them to be able to go to school with a family-appointed aide if required, receive funding for assistive devices and human support, vocational training, and more. Yet we do not have a place at the autism table because it is not aligned with this one type of approach. When autistic individuals are specifically targeted as “not even aware,” or conversely “not autistic” because they can use a keyboard, or can talk, they are excluded from the autism dialogue. There needs to be funding and provisions for autistic individuals and families based on a foundation of value for autistic persons, a preservation of their dignity, and their inclusion. There are Occupational Therapy and Speech Language services that do more for the dignity of autistic individuals than many other operationalized “treatments” and “strategies” out there. There are assistive devices used all the time, and they are the communication bridge that is so needed by this community. All parents use them, but we hear very little about any government support for such services for autism, and little provision for adaptive and assistive technologies in the schools for all disAbled individuals.

The Operationalization of Autism “Treatment”

Any “blanket” or operationalized method has two faults: First, because it presumes that that autistics “don’t” have this skill that must be manifested "typically" which determines the success outcome of the method. For instance, rather than looking how an autistic individual acquires the skill naturally, it suggested that we need to “intervene” in the natural learning process of autistics and impose our method, or what is called a “typical” way of acquiring and manifesting this “joint attention.” Secondly, I am wary of operationalized methods becuase the autistic population is so diverse that one size does not fit all in autism education. The label of autism has stripped individuals of their uniqueness on the one hand, yet made society much more aware of autism on the other, for better or worse.

When I refer to teaching with Adam, I have come to refer to it like a bridge: I consider Adam can be on one side, I on the other, and we most often meet in the middle. I have learned to come over to his side as society demands so much that he and others like him, join the them on their side.

Such bridges are seen in the way Helen Keller learned about water – the confluence of learning a new language, which was taught to her, against her experience of water at the well. The culmination of learning the language and then having the experience resulted in a light-bulb moment, where she learned to communicate with Ann Sullivan, her teacher. She developed a bridge to come to our side. As a side note, it is interesting to me that the ABA community has staked its claim to Helen Keller’s learning as behaviourism. In fact, the community does this in all aspects of teaching, thus calling into question the entire basis of ABA as a valid method of teaching rather than just calling it teaching. Reversely, might we just take the good aspects of teaching in general and learn to understand autism in order to build bridges rather than transform people. In another example, there was an exhibition titled "Seeing in the Dark." People with sight enter a dark room with all kinds of sounds and sensations. Other blind people are in the room to escort the sighted people through the exhibit. At the end, they come out together and the sighted people begin to engage in a conversation with the blind people. A report I heard is that the exhibit is "life-changing," and indeed it is a fine example of crossing over to the other side.

Stephen Hawking writes about the importance of assistive technologies that enable him to communicate in a way that he can. Providing bridges, rather than remediation, is a large part of this compromise – respecting autism and autistic learning and recognizing a need to communicate with others who are not autistic. We need both education and the bridges to communication. Dr. Morton Ann Gernsbacher’s paper “Towards a Behaviour of Reciprocity” in my view, is one of the most important papers in recognizing the need to learn the autistic language as a valid one. Neither type of “language” is superior of the other here. Is learning the autistic language difficult in a world that largely doesn’t “speak” it? Most definitely. Yet, it is no less important and we might consider just being open to the possibilities of listening. By doing so, we can assist the difficulties of autism in addition to accommodating the implicit abilities.

Adam learned joint attention by having fun. Lots of swinging in the blanket (I bet many of you succeeded with this), and OT made a lot of difference for its movement made Adam very happy and willing to engage. OT seems playful and less invasive than many other therapies. It is respectful to the child’s needs. For many reasons, I am very much in favour of Occupational Therapy and Play therapies with therapists who respect autism. The therapist has to work hard to find the preferences of the child, the games they enjoy and builds from that framework. I will admit that I started Adam’s therapy from this basis of thinking that he had to respond in a typical way. I often wonder about the foundation I built for him back then. Since that time, I have been working painstakingly on rebuilding the foundations that others insisted were stable.

The dangerous premise


In contrast, ABA builds from a framework of making the child “normal.” This is why I have strong feelings about it. It is not that I am against ABA parents per se, and their desire to obtain financial aid. I have no wish to become part of the political debate which seeks to insist that one method is superior over the other. I am against, however, any treatment that is built on a damaging premise. Today, since the court cases which has brought ABA into the public foray, its advocates continue to shape-shift. It claims every successful teaching method as its own. It turns claims from “medically necessary treatment” in autism into “necessary educational tool.” I warn readers, that the nature of it is still the same, and the quality of ABA therapists in Canada, with very limited knowledge of autism, is extremely poor. ABA may be shape-shifting to become more acceptable in the public eye and to parents at large, but as long as autistic individuals are held up to the impossible comparison of “becoming normal,” it is unachievable and as such, we must continously question the ethics of it as the only educational option. Margaret Somerville, whom I quoted earlier states:

“In general, when we are in doubt about whether an intervention or its outcome falls within the definition of the natural, we should apply a precautionary principle: we should assume that they do not do so until the contrary is shown, and therefore undertaking that intervention and its outcome must be justified….in the past when our powers to change the natural were extremely limited, we allowed intervention until it was shown to be harmful. I believe that the new powers science and technology have given us make this no longer acceptable…I argue that we should have a presumption in favour of respecting the natural, which means that unless we can show that we are justified in intervening or altering it, we should refrain from doing so… The burden of proof of justification lies with the person claiming that there should be an exception. Consequently, in situations of equal doubt, the position of the person who is favoured by the basic presumption prevails. This difference in burden of proof can be extremely important in determining what we may do, and what we must no do if serious, or possibly serious but unknown or unknowable, risk is present.” (p107)

Why, with such a recognition, would you keep up a therapy that is intrinsically painful and potentially demoralizing to the child? We know from autistic individuals that the “look at me” program and means to obtain “joint attention” can be downright painful. Autistic children continuously refer to themselves as “bad” children and “freaks,” suggesting that the good children are those who are not autistic. As parents who want to protect the self-worth of our children, and want them to be as independent as possible, or to fulfill their dreams with the assistance and support they may need, should we be looking towards building a new foundation together? Might we consider moving beyond looking for the “cure” the one remedy and begin again by looking at the complexity of not only autism, but of how we value human beings? Can we work to protect the dignity and spirit of our amazing autistic children?

By creating acceptance and diversity as the “enemy” to autism, as if all that exists here are a bunch of granola eating hacks, or “dilettantes” they are creating a divide that is damaging to the future of autistic individuals. In sum, the end does not justify the means.

Steps to Rebuilding

It mightgo without saying that we need to build a new house. Maybe the entire floorplan needs to be changed. Can we save one room? Perhaps one beam from the old framework? Or perhaps just a nail? Or has the entire ABA community claimed some plain old teaching methods as their own to be “acceptable?” Dump the terminology. That would be one step out of the boxes that entrench us as being invested in a "method."

We can’t rebuild unless we acknowledge that the achievement of normalcy isn’t the goal. The achievement of a fulfilled autistic person is. The creation of safe and nurturing environments. Perhaps that may mean that one autistic individual will need supports throughout their lifetime, but can otherwise achieve other pursuits with those supports. It often means that some autistics may not be toilet trained. Do we withhold entry into schools, these children who are often so intelligent, because of something so minor? Does it matter if your child can use a stove, or make a sandwich and use a microwave, if they can later write books or pursue poetry? What does it mean to be a fulfilled individual? Why is it so contingent on being independent? Afterall, we live in a society that is so interdependent.

My concern is finding the assistive technologies that help Adam to communicate now and dealing with anxiety. I recognize his intelligence and observe his innate way of learning. I try very hard to provide him with tools. I want teaching to be a creative, fluid process, because no one has the answers here, the way ABA advocates suggest it has. I want parents to have a choice in the way they can teach their kids. I want them to have a choice in the way they are taught in the schools.

ABA methodology suggests that without certain fundamental skills that need to be learned first, a child cannot move on. It sequences learning in a way that fits a “typical” developmental process, which we know is not typical in autism. Rather, my son might recognize and read words beyond his grade level. He knows how to count by 5’s and 10’s on his own. Because he does not yet communicate with me in a way I can completely understand, I cannot presume to know his learning process and thereby, cannot assume that he needs this sequenced teaching because I need him to respond typically. I appreciate all kinds of ways of teaching Adam to find the way that he responds to. Yet I am horrified at the notion that he may be subject to a government driven program that states autistic people only learn through one method. I am horrified because we have been subjugated to four years of people and the behaviourists never understand Adam fully. They apply strategies and talk about them in front of him and I know he understands what they say about him. They treat him like he’s not even there. I have also met good therapists who come from this background, as I’ve stated many times in this blog. But please, open up the funding to support autistic people and families – consider the accomdoations required with assistive devices, human support, inclusion in schools, lectures to understand autism. Consider the choice that parents want in supporting their children with Occupational Therapy, Speech Therapy, keyboarding skills and other augmentative communication, and more. Consider that I want autistic adults in the schools also a part of teaching my son because in order to understand how to educate autism, we need to figure out who, among the autistic adult community, is willing to pitch in here.

The Autism Acceptance Project is bringing such projects, support groups for parents lead by autistic individuals, lectures and more. We are here to support people, to talk, and to learn. We have people who use ABA, and people who do not. While we do not support its premise and demand more quality and understanding from educators and therapists, we have no wish to exclude anyone from creating a better world for our autistic children. I consider that my son Adam is worth the toil. He is worth my researching, learning, traveling, meeting other autistic adults, and continual learning about autism. He is worth making our mistakes, as long as we learn from them and move on.

Above all, I want to respect my son for who he is and how he learns. It can be difficult and frustrating at times. Yet, I consider myself his guide, his mirror upon which he will self-reflect and derive a part of his identity. I want to support him in every way possible so he can be as self supporting and productive as possible. At the end of the day, parenting an autistic child is not much different than parenting any other child, except that our kids are truly, wonderfully exceptional.

4 Comments:

Blogger Peggy Lou Morgan said...

Wonderfully said Estee, I absolutely agree. "Treatment" that is truly helpful must be geared to the individual. However, systems seem to be so geared to the group. Individuality seems to be forgotten.

I had to come up with a system that helped me observe Billy Ray as an individual not by the labels of his various diagnoses. He is a beautifully unique snowflake as long as we consider his individuality and don't try to push him into trying to be "normal".

Best regards,
Peggy Lou

11:50 AM  
Anonymous Eric said...

It is one of those conditions that there appears to be no common path that works. It's a pay up and see mentatlity.
We have paid up on many things and thankfully most of them have made a difference.
For us ABA/VB worked very well and gave our boy language. Without this and certain biomeds, we would not have been able to have contact with him.

11:08 AM  
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10:51 AM  
Anonymous Axistive said...

You're so very right about how much autism is looked at as being the end of a normal life. Awareness of the problem and early detection are the key towards helping prove to the world that autism can be dealt with. It isn't the end of the world. Hard at times, but not the end.

7:55 PM  

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