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A Better Autism Awareness Month?

Filed Under (Ableism, Acceptance, Accessibility, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and The Media, Behaviours, Contributions to Society, Critical Disability Studies, Diversity, Inclusion, Institutions, Uncategorized) by Estee on 08-04-2014

I’ve been sitting back and watching. While not all things are perfect, I have to recall what it was like in Ontario 12 years ago when I was first introduced to this social phenomenon called autism. CNN had numerous reports on the “epidemic” of autism; the MMR vaccine was blamed; there were numerous reports of questionable remedies that put autistic children in harms way; there were hate blogs written about autistic people and parents who wanted to love and support their children.  The blogesphere was not yet syndicated and contained burgeoning home-made blogs by people labeled with autism and we learned a lot from autistics who wrote them – about activism, identity, the right to be who we are in every neurological way. Indeed, neurology is a term of the times which has redefined difference (neurodiversity). Although this is critiqued by many of those belonging to the disabled community as the new normalizing term (Lennard Davis, The End of Normal: Identity in a Biocultural Era, 2013) thereby losing its utility,  I suppose I belong to a group who believes that we might not have gotten to this place of questioning, and beyond an institutional disabled identity (i.e. segregated and isolated), without this renaming and reconceptualization. To further highlight Davis’ important question:

“If we are now living in an identity-culture eshatron in which people are asking whether we are ‘beyond identity,’ then could this development be related in some significant way to the demise of the concept of ‘normality? Is it possible that normal, in its largest sense, which has done such heavy lifting in the area of eugenics, scientific racism, ableism, gender bias, homophobia, and so on, is playing itself out and losing its utility as a driving force in culture in general and academic culture in particular? And if normal is being decommissioned as a discursive organizer, what replaces it?’” (Davis, 1).

Davis argues that diversity has become the new normal.He also makes an important point that there are some people who do not have a choice of identity, which, in my words, may dampen the concept of diversity for our community. In particular, disabled identities are not chosen. Perhaps we now have to think beyond identity and challenge the concepts of acceptance and community in a world where these lines are always expanding and contracting.

That said, I remember what my introduction was to autism. Mothers and fathers before me remember institutionalization. Parents advocate for a world where autistic children are accepted, even if in a neoliberal paradigm (in other words, while we can see its shortcomings, we still do many unpleasant things to survive). It seems the “strengths” of autism at least are earning a place at the employment line, which then perhaps allows our children to get an education and better services. Perhaps our kids will be understood for their sensory, communication and social issues and not be reprimanded or judged for them. All these seem like good things. I would like to imagine a world where we never forget – where many of the younger generation of ABA therapists and teachers have no recollection of “different” kids in their neighborhood suddenly disappearing. There is work to be done to educate people working in the field on the history of disability and institutionalization and how close we always seem to be to doing that again. Must we continue to ask why this is happening despite the advocacy for autism acceptance?

And finally, in Davis’ words:

“There is a built-in contradiction to the idea of diversity in neoliberal ideology, which holds first and foremost each person to be a unique individual. Individualism does no meld easily into the idea of group identity. And yet for neoliberalism it is a must. In a diverse world, one must be part of a ‘different’ group – ethnic, gendered, raced, sexual. It is considered boring if not limiting, under the diversity aegis, to be part of the nondiverse (usually dominant) group. So diversity demands difference so it can claim sameness. In effect, the paradoxical logic is: we are all different; therefore we are all the same.

The problem with diversity is that it really needs two things in order to survive as a concept. It needs to imagine a utopia in which difference will disappear, while living in a present that is obsessed with difference. And it needs to suppress everything that confounds that vision. What is suppressed from the imaginary of diversity, a suppression that actually puts neoliberal diversity into play, are various forms of inequality, notably economic inequality, as the question of power. The power and wealth difference is nowhere to be found in this neoliberal view of diversity….Ultimately what I am arguing is that disability is an identity that is unlike all the others in that it resists change and cure…disability is the ultimate modifier of identity, holding identity to its original meaning of being one with oneself. Which after all is the foundation of difference.” (Davis, 13-14).

While I acknowledge Davis, I find myself thrust into an acceptance paradigm that allows Adam to be in a classroom and in the community, however imperfect (requiring time, exhaustive and emotional effort, Adam’s emotional effort and his ‘trooper’ ability among it all) – and all of this based on proof of competence and ability as he counts money so fast that the adults in the room have to check to see if he’s right (he is). I think it is great if we can enable others to see autism as a way of being in the world – sensory difference as not behavioral belligerence; non-verbal disability as not an unwillingness to speak or non-intelligence. To go on: not looking at someone when they are speaking doesn’t mean that the autistic person doesn’t understand what is being said; not wanting or able to be social should not be isolating or a reason to segregate nor a reason to push one to be social just like everyone else. (So what I’m saying is that as activists and/or advocates, we are still at this place). There are still so many misunderstandings in a moment with an autistic person, and one hopes that this marketing will help. I mean, we all have to survive, right? Adam’s survival is no different than mine except that he is at a clear disadvantage despite “neurodiversity.”

While recent autism advocacy is far better than I can remember 12 years ago, it remains services and employment based (and I am not at all suggesting we don’t need to do this important work to discuss services and accommodations past the age of 21…but we need to discuss this also in a much larger context). A discussion of the inequalities about which Davis and others speak must also be a topic to discuss the bigger picture of what we mean when we talk about inequality. Another part of this discussion might be to discuss all the the proofs that an autistic person has to demonstrate before earning a place at the school desk and in the boardroom – and a discussion why these suggest human value. These may not acquire the immediate services that people need but they are important to our evolution. We can do this while continuing to mine the various meanings of purpose.

Autistic Freedom

Filed Under (ABA, Ableism, Acceptance, Activism, Advocacy, Anxiety, Art, Autism and Intelligence, Autism and Learning, Behaviours, Communication, Computing/iPad, Contributions to Society, Development, Language, Law, Movement Disturbance, Obsessions, Parenting, Politics, Safety, school, Sensory Differences, Transitions, Wandering) by Estee on 26-06-2013

I’ve been thinking and planning with Adam’s team the next stages of his learning and doing our map project. Every once in a while, I got down the dark whole of blog comments and blogs that consistently regard autism, even its many complications and struggles, as inherently “bad.” The issue we have with thinking in these terms, although safety is an ongoing concern for many parents including myself, is that we think we can shape behaviour without truly understanding it, and that what we are talking about is bad behaviour. Behaviour is something that we can control, impulse and many disabilities are not constituted by the will of a person. So when we talk about shaping behaviour and “positive” behavioural support, we always have to question our subjectivity and how we’ve come to make sense of autism.

Given many of our children are not provided access to alternative communication support, and cannot tell us otherwise, and that it takes time and care for many autistic people to learn how to communicate (if they can), the Antecedent, Behaviour, Consequence (ABC) mode of tracking behaviour will remain problematic, and the very recognition of that can be helpful. There are often too many conflating factors that precede a behaviour so, while we do our best to interpret it, it is always difficult to claim one cause. Here I find that I’m needing to ask many different players in Adam’s life for information so that I can cobble together the best interpretation I can, bearing in mind that this is merely an interpretation.

So with recent events and noticing Adam’s propensity for visual memory, needing to know his environments, I continue to study maps and autistic art and will experiment how this might be useful for Adam. This is another example of the visual map I found by an autistic artist found at Drawing Autism: 50 WAtts. It’s part of my interest in helping Adam draw his own maps as a way of understanding his own environment. This means, I have to be careful how I enable and support him, and be in a continuous reflexive state of mind in terms of enabling versus prompting him which would therefore NOT be his own communication.

Felix: Imaginary City Map, Age 11

Here’s how the artist responded about the work:

What was the inspiration for this piece?

Generally I start drawing one street on different spots on the edge of my paper. I make the streets grow toward one another.

Who are some artists that you like?

None. I study road maps and atlases in detail and generally I scroll the full track of our trips on Google Earth.

I turn now to education in hopes to keep honing in and improving it when I think of Adam’s needs. Under the rubric of the Medicaid system in the US – a system that is already in existence – advocates seek more, or varied, habilitative services for autistic individuals. This is an important beginning within an existing system and we have to keep discussing the medical model and its effects on the way autistics are included and regarded as full citizens, or not, in society. In Canada, we also require more choices that fit with parental values and wishes for their autistic children, and this was addressed by Doug Reynolds in his paper for Autism Ontario: Looking Forward: Has Intensive Early Intervention Hijacked the ASD Agenda? The work of autistic people in this is valuable in how I think about Adam and his education and the extra supports and help he needs. Bear in mind, I write here a blog post, not an essay. Here are some of the ideas that I think about that I have not yet formatted into a paper.

To go on, if a parent wants an education for their autistic child, they should be able to work with a school to attain it using some key principles:

1) Respect for autistic identity and personhood;
2) Understanding learning at one’s own pace and an acceptance of it (as opposed to a linear model for learning and development);
3) Understanding and completion of complicated sensory profiles and the time it takes for accommodations to be put in place and,
4) recognition that accommodations frequently change and must remain flexible;
5) Recognition and acceptance of family-hired (which could fall under a direct-funding model from government support) support workers as reasonable accommodation in classroom – for transitions, programs, to help with accommodations and if needed, supported communication and whatever accommodation an individual and family might need to enable success;
6) Transparency by schools – to allow parents in for observation, to review class binders, etc. Considering many of our children are non-verbal, it would be good to not only communicate in binders, but to allow drop-in visits (even if a bit of arrangement is needed to respect others). This enables open-hearted communication and better accommodations.
7) Communication aides and technology and access to supported communication and devices as legal right to communicate as autistic people. As an example, an ABA therapist will often say “use your words,” thereby implying that an autistic child is stubbornly with-holding them. Considering the levels of frustration an autistic person has when they cannot communicate, do we not think they would use their words if they could?);
8) Recognition that most autistic people we name as “inconsistent” and “discontinuous” or “having regressed” is often a result of sensory issues and transitions, and that learning happens at unexpected rates. Sometimes, the teaching agenda must be put aside when an autistic person may seem “disregulated” and build back tolerance. An autistic person can often jump several grade levels in reading, for instance, and then appear to have regressed. This is not necessarily indicative of a regression so much as a need for a body to regroup. Therefore,
9) testing autistic people academically so they can advance grades must happen with re-presented formats, over many sessions, and then, the best result should be taken as an achievement of grade or pass so that the autistic person is not held back until they “recover” from autism to normalcy and thus never allowed to advance, or potentially restrict their pace and ability. To understand the seriousness of withholding education as a right, see Moore vs. British Columbia and the note that remediation may result in adverse effect discrimination because it assumes a person has to reach a certain level of normal performance before granted the right to be educated. Of course we want children to generalize skills and be as independent as possible or to achieve an 80% mastery, but often this concept of discontinuity is missed or misunderstood and education is held-back.

These have been my considerations of late and, and I support a variety of methods that befit a child and the combination of many may suit for different people and different situations, so long as they do not harm or torture an autistic person.

ABA is pretty much the only method which is used in Canada to remediate autistic people before granted access to education (particularly people labeled with Low Functioning Autism, who are non-verbal, or who have complex sensory systems). It can be a useful strategy also within a curriculum but it needs to keep examining itself from within and by studying autistic autobiography and potential effects of behaviourism on self-identity. I am suggesting that autism schools also need trained teachers in regular and special education and need to:

1) Be inspected by the Ministry of Education for meeting curriculum requirements (the adapatation and accommodation piece is an extended discussion);
2) Adopt other methods that we know help an autistic person learn through re-presentation of materials (see Judy Endow);
3) Be reflexive about the psychological effects of shaping behaviour and compliance may have on autistic individuals self-esteem and identity;
4) Learn creative methods and enable an autistic person to go on outings to educate not only life-skills, but other interests by using other methods and creative strategies. I remember one professor of an autistic child stating that when her son was interested (or people tend to label “obsessed” with asphalt), she took him to an asphalt factory.

Do schools undergo this kind of creative exercise for autistic children who, for instance, may bolt and may be so enamoured with routes and maps so as to learn something as opposed to controlling behaviour? Sure, we have to attend to immediate safety concerns, sensory regulation and building tolerance – these are important steps to an autistic person’s success. Yet my question persists – what can we do that teaches an autistic child to creatively channel their passions and proclivities? What are we telling an autistic child day-in and day-out about them when we ask them to “comply” to our agenda without enabling some of theirs? What is freedom if not mobility? Is an autistic person a slave to the performance of normalcy if they are not allowed to freely move their bodies in order to feel safe and secure? (See Judy Endow and Tito Mukhopadyhay). For instance, there is so much autistic autobiography about how autistic people need to protect themselves from over-stimulation – reverting to their iPad in order to be part of a group, squinting their eyes, or if they do not feel their bodies, they feel frightened and must flap their hands or lie on the ground in order to feel safe! If we are talking about “safety” how are we helping? To what extent to researchers and teachers use and take autistic autobiography seriously?

The other issue I need to bring up today is one of freedom of choice. What I find concerning about models of teaching for autistic people specifically is the judgement of some parents against other parents for choosing what they feel is right for their families and their children. It is not right to state that an autistic person has to undergo a certain drug or therapy or blame a parent or an autistic person. The freedom of families as well as autistic people is at stake, and while I wish to trouble this, I realize this has many angles and complexities within such a discussion. Some autistic people feel a parent agenda, if it is one of just becoming normal without critical regard, can result in problems when autism is seen as a disease that requires potentially harmful remedies. So by no means is this discussion an easy one, but there is no freedom if Canada only presents and makes available one kind of service. In short, Canada, with an autism agenda led mostly by parents, needs to consider what it’s building and its long-term effects. There needs to be choice for families, a respect for values and an invocation of substantive equality in our systems.

Here I wish to close with an opening – with the words of Melanie Yergeau, autistic, from her essay, Socializing Through Silence:

“My silence is in fact a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words – your words, the out-of-the-mouth and off-the-cuff kind – I often do so out of fear. Fear that my rhetorical commonplaces – the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds – will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all…This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer communication. I understand that speaking is how you best learn and interact…

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that – when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or ‘scripting’ lessons – when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.”

— From: Loud Hands: autistic people speaking, pp. 303-4, The Autistic Press.

Now, how can we respond?

Mapping Things Out

Filed Under (Acceptance, Adam, Anxiety, Behaviours, Contributions to Society, Movement Disturbance, Obsessions, Safety, Sensory Differences, Transitions, Wandering) by Estee on 19-06-2013

london-globe_1839825i Image by: Stephen Wiltshire.

I must admit time heals anxiety. After the darkness comes the light, or is it the other way around? Well, the globe rotates. As Adam seeks knowledge by going through doors, I have always needed to calm my own anxiety through books. As I think more again about Adam’s need for doors, his curiosity for bushes, dark places, paths, and in particular, the doors within buildings, I’ve been thinking about maps and a book I bought for this purpose in considering Adam’s interests – Denis Wood’s, The Power of Maps. As many autistic individuals proclaim a need to map, to visualize, and with an exceptional ability at visual memory (routes, maps), I feel that this is the next frontier for us: to learn how to make maps of our environments, to build a 3-D version of our house, and go from there.

“We are always mapping the invisible or the unattainable or the erasable, the future or the past, the whatever-is-not-here-present-to-our-senses-now and, though the gift that the map gives us, transmuting it into everything it is not, into the real. This month’s Life leaps at me from the checkout counter: ‘Behold the Earth,’ it says. ‘Startling new pictures show our planet as we’ve never seen it before.’ Inside, below the heading ‘This Precious Planet,’ the copy promises ‘Striking new views from near space show us more than we could have guessed about our fragile home…I am overwhelmed by the solidity and apparent indestructibility of everything I see around me. Only the pictures – let us think about them as maps for the moment – convince me of the reality the captions evoke…’New picture’; ‘never seen it before’; ‘new views’; ‘show us more’; each phrase insists on the fact that indeed I never have seen the planet in quite this way” (p. 5).

It reminds me of Dawn Prince when she wrote in Songs of a Gorilla Nation of how she ran to greet every room of the house over and over again. Many other autistic people have superb visual memory (Stephen Wiltshire, Temple Grandin…). Adam once drew pictures that were so “correct” in their perspective despite the fact that he otherwise has weak motor control. This leads to the conditions in which a person with various sensory disabilities can and cannot perform the same task or function. Soma Mukhopadhyay speaks of this in her books on Rapid Method Prompting and I find them true to Adam – the way a keyboard is positioned, his orientation, the differences he experiences with his vision other body movements.Things have to be set up the right way for him, and I need to always pay greater attention because it is easy to fall back on my laurels and adopt my take-it-for-granted view of the world.

Sometimes it seems that I’ve always known that mapping could be Adam’s hobby which might lead to map-making or building. He needs to know what’s behind everything for what we call “obsession” or “stuckness,” automatisms and the like. Lennard Davis discusses how we come to value obsessions, particularly the actions of artists as “obsessive acts,” like Vincent Van Gogh. Instead of invoking a moral value (a trait or characteristic as inherently good or bad, positive or negative), we can come to accept these proclivities as inherent (even if it scared the living day lights out of me). Adam needs to explore and to know as I do by finding information in books. How might I make this something that works for Adam? This is my next frontier.

“The sphericity of the globe is not something that comes to us as seeing-hearing-sniffing-tasting-feeling animals, is not something that comes to us… naturally. It is a residue of cultural activities, of watching ships come to us up out of the sea for eons, of thinking about what that might mean, of observing shadows at different locations, of sailing great distances, of contemplating all this and more at one time. It is hard won knowledge. It is map knowledge. As such it is something that little kids have to learn, not something they can figure out for themselves. ‘Educators are living in a dream world if they assume young children understand that the earth is round’” (p.6).

So why do we prohibit Adam from being free to explore, to know what and how he needs to know? How can we keep him safe while doing so? How can we fuel his interests in ways that are productive for him, and perhaps for many others?

The Curiosity of School

Filed Under (autism, Books, Contributions to Society, Inclusion, school) by Estee on 04-09-2012

It is the first day of school for just about everyone. Most discussions about autism has to do with learning and inclusion — keeping our children integrated, or keeping them home-schooled when appropriate, or even better for their needs, developing social skills, academics, life and communication skills. No matter what methodology — or school — we may consider, this question lingers–what we are trying to accomplish and how is equality reflected (or not) in our school systems?

I still struggle to fit it all in — a list of goals for Adam measured against the hours of the day and his own abilities, pace and interests. “Following Adam’s lead” seems like an easier solution, and the ideas of “pushing” him, or any child for that matter to reach their “potential” and “following his interests,” are ideas in constant tension in the autism community. Add to that the idea of “normalizing”or becoming a “productive member of society” against our ideas of what productivity means for a variety of different people, and we come up with more important questions about how we should help autistic people. Some might contend that our current notion of productivity has more to do with amassing material goods than about contributing to society.

Autistic education is located within our ideas, and conflicts about the idea of what we feel a school should be in this economics-as-material-consumption sense. Zander Sherman explores this and looks at the development of schools in Prussia which prepared students to become part of a strong army. He looks at testing, private schools, the military.

His new book is called The Curiosity of School: Education and the Dark Side of Enlightenment. The Globe and Mail reviewer, Ben Levin says that Sherman’s thesis seems to be a quote from Einstein that he uses at the beginning of his book, “It is a miracle that curiosity survives formal education.” Sherman was home-schooled himself until the age of 13 and thinks “that mass education is excessively focussed on the wrong things — compliance, a narrow curriculum, preparation to fit into a society and economy — and thereby does not give sufficient attention to real education, the pursuit of curiosity and personal challenge.” (Saturday’s Globe, page R15). It would be interested to review the book against others like Elusive Justice by Abu El-Haj and others that deal with education, equality and social justice. I have to ask, how do we nurture and promote Adam’s own curiosity? Do we recognize and value it if it appears different to us? Isn’t this value we attribute part of his right to be equal and different?

Adam is back at school as am I. We have always used the modes of learning that we have at our disposal, that seem to suit him best, but we have to admit our limitations in understanding our children. We try, they try, and as his mom in thinking about his whole life and the “quality” of it, and even how we define that, I feel it’s my duty to him to ask myself the harder questions.

Awesome Anthony and Autistic Contribution

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

I think Anthony is awesome.

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

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

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

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

Best of luck in your new business, Anthony!

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.

Part of the Network of Give and Take

Filed Under (Contributions to Society, Inclusion) by Estee on 18-12-2011

It has occured to me that Adam gives back. He’s not the only one in need of assistance. He and I, and all of us, are part of a network of give and take.

For many reasons this Hannukah and Christmas (or Fesitivus for the rest of us), Adam and I will be volunteering to assist families in need of food in Toronto.

Adam is affable, people love him, he puts smiles on people’s faces. More than this, he’s systematic and likes to contribute. Giving out food will be a constructive work for a nine-year-old who will be taking on his first “job.” I believe that we have to let our children learn and meet others who are part of the G&T network I referred to above. It equalizes us.

One mom the other day, of a younger autistic child, said she was self-conscious of going out with her child. I said that we as autistic families cannot ever stop going out and being part of the world. If we do, no one will understand us and there will be nothing available for autistic people. I thought this is a way for Adam to begin learning that he is valued and needed, as an autistic person.

Not only do we go out all the time and are part of our community, but Adam is not just on the receiving end of services. He is able to give back in so many ways.

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.

About Control

Filed Under (Activism, Behaviours, Contributions to Society) by Estee on 26-01-2011

Yesterday, The Globe and Mail published, For A Child, It’s All About Control. The premise of the study, conducted by researchers in New Zealand followed 1,000 children for more than thirty years. The findings, published in the Proceedings of The National Academy of Sciences stated that “those children who demonstrated strong self control skills as early as age three were less likely to abuse drugs, and develop health problems, experience financial difficulties or be convicted of a crime.” The ability to control one’s own behaviour is an indication, therefore, of future success. I guess that makes most of us the doomed portion of the population.

I’m not just writing this because I felt like I was reading a paper in 1900, not 2011. I’m writing because I have an autistic child, where the controversy in his way of being is primarily described as behavioural — difficulties with attention, focus and impulse control. Children diagnosed with ADHD, ADD share similar impulse control “issues.”

It’s an odd time we live in. We diagnose every possible human way of being under the sun, while also being able to appreciate, paradoxcally, the creative contributions and potential of people with, as we say, “different kinds of minds.” Despite all our best efforts to use medications to control behavioural issues, the individuals we medicate are often incredibly able, talented, and have been, in fact, insanely successful. An official ADHD website proudly lists successful people with the disorder, the list including Albert Einstein. And this list. In keeping with funny little lists, here’s one that cites some successful autistic people. And another one.

Most of us have heard and read about Donald Treffert’s work in giftedness and autism, although not every autistic person possesses exeptional gifts (even though everyone is exceptional). The real issue seems not to be that the ability to exercise self-control makes us more successful, but in how we learn to work within the frameworks we’ve got. The most heralded people of our culture are the ones who are able to think out of the box; in other words, differently.

Another issue is one of pedagogy. The study insinuates, for me anyway, that all children should be alike: focussed, sitting at their desks and compliant with their teacher. A child like Adam is a sure candidate then, to be banned from schools that use these criteria as a series of prerequisites. Sure, we all have to learn the rules, but the rules also have to bend for the accommodation of individuals so that they can learn. One example is having children move throughout their day in order to think. As physical programming gets slashed and Canadians, in a recent CBC report, are getting fatter, it might be no wonder how children have difficulty concentrating. There are many different ways to learn. Most autistic chidlren need sensory stimulation throughout their day, similarly, to be able to focus.

“Self-control is a vital skill for scanning the horizon to be prepared for what might happen to you, for envisaging your own future possibilities, for planning ahead to get where you want to go, for controlling your temper when life frustrates you,” says Terrie Moffitt from Duke University, quoted in the article. Really? Can we truly plan ahead? I mean, a few years under my belt and I’ve been stimied over and over at the universal joke: that life never ends up the way we plan. Nevertheless, we’re all supposed to have a good one. While it’s not the entire point of my post here, some of the reasons cited as necessary for being in control of oneself in the study seem a little silly.

How many of us have had behavioural issues in our lifetime, or a real diagnosis effecting our ability to control our impulses? Have the researchers considered the contributions made to our society by individuals who have severe difficulties with it? How many of us might have to use many accommodations throughout our day in order to be “successful” — the very word raising many other questions on what success really means?

“You’re training people to think about long-term consequences of their behaviour,” Professor Piquero was quoted.

Indeed.

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Put The Autism Hub Back Online

Filed Under (Advocacy, autism, Autistic Self Advocacy, Contributions to Society) by Estee on 12-05-2010

I am really disappointed that the Autism Hub is on “hiatus.” A lot of people were referred to the Hub around the world and it is an extremely important gathering of blogs in support of autistic people. I remember when the Hub was started in and around 2005 by Kevin Leitch and what an undertaking that was. The Hub, since, has been explored at universities world-wide and on television.

My vote is to get it back online as quickly as possible. How can we help to do that?

It’s Just That Simple

Filed Under (Acceptance, Advocacy, Autism and Intelligence, Autism and Learning, Contributions to Society) by Estee on 02-03-2010

I love this video. It’s just that simple. “You get rid of the autism gene and you get rid of Mozart, Einstein, Silicon Valley…” I love how Temple advocates and it’s this kind of advocacy that assists us in putting ourselves, as neurotypical parents and teachers and therapists, with outrageous expectations, under a much needed spotlight. Beyond listening to her story about “gifts” is an opportunity to consider the disconnect we create when we try to “fix the problem.”

Lorraine Kerwood: “I didn’t perceive myself intelligent in any way”

Filed Under (Autism and Intelligence, Contributions to Society, Obsessions) by Estee on 24-11-2009

Lorraine came to me by way of my own website, which attests to the power of the Internet in making connections these days. Reviewing her own work with recycling computers, and how she came to regard herself by way of other people’s view of her, I of course cannot help but think about autistic people and what a “contribution to society” can look like:

For people who view obsessions as negative, this video is another story of how our “obsessions” are pathways to creativity and invention. Visit the Next Step Recycling website.

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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.