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.

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.

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?

Disability Organizations Launch Formal Complaint Against Bias, Damaging Media Coverage

Filed Under (Activism, Autism and The Media) by Estee on 30-03-2012

This press release was released today. I think this is also a call to all autism parents and providers to watch the bias language that is so often used in regards to autistic people:

Canadian Association for Community Living

Volume 10 Issue 5 March 2012

Contents
Disability Rights Organizations Launch Formal Complaint
CACL President – Laurie Larson Addresses Global Television

For Immediate Release
March 30, 2012

Disability Rights Organizations Launch Formal Complaint for Biased, Damaging Media Coverage

Toronto, ON – The Canadian Association for Community Living (CACL) joins other disability rights groups in calling on Global News to account for the exclusion of the voices of persons with disabilities and their families in recent programming and is launching a formal complaint in an attempt to address this issue.

On Friday March 16th, Global Television aired an episode of the program 16×9 accompanied by a live blog discussion featuring advocates who wish to change Canadian law in order to allow them to end the lives of their sons and daughters with disabilities. It featured a panel of convicted murderer, Robert Latimer; commentator Arthur Schafer, who has argued that Robert Latimer’s sentence was ‘unjust’ and Annette Corriveau a mother from Ontario who wants the law changed to allow her to end the life of her two children who have disabilities.

Laurie Larson, CACL President, stated: “There was an extreme bias represented by the program that needs to be explained. We were alarmed by Global’s uncritical promotion of these views and by the blatant disregard of the voices of the movement of people with disabilities and families who would tell “a different story.” This programming provided a mere platform for these views—not a discussion.”

CACL has been contacted by many in the disability community who were deeply disturbed by Global’s portrayal of life with a disability as a tragic life without value. The program repeatedly suggested that parents are being unreasonably prevented by law from acting on a wish to end the life of their child. The program incorrectly stated that Canada’s laws permit the removal of nutrition and hydration as a means for ending the life of a person with a disability. The uncritical presentation of such views is inflammatory and dangerous.

Canada’s laws are in place to protect the equal rights to life, safety and security shared by all citizens. These laws are especially critical as we enter times where people with disabilities, along with other groups such as the elderly or people with additional health care needs, are facing numerous threats to their well-being. In such times, CACL stands firmly on our vision of inclusion and principles of equality, diversity and community and will defend the equality rights of people with intellectual and other disabilities. We will continue to challenge positions that border on hate but parade in a cloak of ‘ethics’ and demand that media be held accountable for the broadcast of material that crosses the line from “controversial” to hurtful, damaging and inflammatory.

We are asking Canadians to join us in holding media to a high standard for public conversation of these difficult issues—not sensationalism and one-sided platforms that undermine both the moral and legal status of targeted groups, as was clearly the case here. CACL has registered a formal complaint with Global News and the Canadian Broadcast Standards Council and is asking other concerned Canadians to do the same.

– 30 –

For more information contact Michael Bach, CACL Executive Vice President, 416-209-7942; mbach@cacl.ca.

CACL President – Laurie Larson Addresses Global Television

March 30, 2012

To: Global Television
Attn: Jennifer Tryon (jennifer.tryon@globalnational.com)
CC: Canadian Broadcast Standards Council (complaints@cbsc.ca)

The Canadian Association for Community Living (CACL) is profoundly and deeply offended by recent biased and inflammatory programming aired on Global Television which broadcast views about the lives of people with disabilities that are hurtful, damaging and dangerous.

On Friday March 16th, Global Television aired an episode of the program 16×9 accompanied by a live blog discussion featuring advocates who wish to change Canadian law in order to allow them to end the lives of their sons and daughters with disabilities. It featured a panel of convicted murderer, Robert Latimer; commentator Arthur Schafer, who has argued that Robert Latimer’s sentence was ‘unjust’ and Annette Corriveau a mother from Ontario who wants the law changed to allow her to end the life of her two children who have disabilities.

CACL was shocked by the extreme bias of the panel assembled for the televised program and accompanying live blog discussion. The one-sidedness of the panel provided a platform for these views—not a discussion. We are alarmed by the uncritical acceptance and promotion of these views and by the blatant disregard of the voices of the movement of people with disabilities and families who would tell “a different story.”

There are deeply concerning shifts taking place in society whereby a ‘perfect storm’ of threats are increasingly making it a dangerous time to be a person with a disability. Resource constraints, exploding demands on the health care system, the ‘perfect baby’ myth, proliferation of pre-natal screening technologies and routine termination of pregnancies involving Downs Syndrome and other disability traits are all contributing to a bigger picture conflict whereby certain groups are being singled out and targeted. Global’s programming uncritically provided a platform for perpetuating profoundly devaluing and damaging views without regard for this bigger picture or providing opportunity for people with disabilities and their families to provide a different perspective.

In this context, we are deeply disturbed by Global’s portrayal of life with a disability as a tragic life without value. We reject the repeated and dangerous suggestion by the Global Television program that parents are being unreasonably prevented by law from acting on a wish to end the life of their child. We reject the inflammatory suggestion made in introducing the program that “the law of nature would not see their survival—but here, the law of a nation keeps them alive.” Further, we correct the inaccurate statement that Canada’s laws permit the removal of nutrition and hydration—food and water—as a means for ending the life of a person with a disability.

Canada’s laws are in place to protect the equal rights to life, safety and security shared by all citizens. These laws are especially critical as we enter times where people with disabilities, along with other groups such as the elderly or people with additional health care needs, are being singled out and targeted. In such times, we stand firmly on our vision of inclusion and guiding principles of equality, diversity and community and will defend the equality rights of people with intellectual and other disabilities. In order to do so, it is critical that we address outrageous instances where these notions are provided a platform and demand that media be held accountable for the broadcast of material that crosses the line from “controversial” to hurtful, damaging and inflammatory.

By this letter, we are registering our complaint regarding the views about people with disabilities broadcast on the program 16×9. We are also registering a formal complaint with the Canadian Broadcast Standards Council as we believe that this programming is in contradiction to a number of principles outlined in the Code of Ethics and Equitable Portrayal Code. We ask that Global take action to address and prevent such one sided portrayal of issues and we remain anxious to discuss how this might be achieved.

Sincerely,
Laurie Larson, President
Canadian Association for Community Living

Address postal inquiries to:

Canadian Association for Community Living Foundation
Kinsmen Building, York University 4700 Keele Street
Toronto, ON M3J 1P3

Michelle Dawson in More Magazine

Filed Under (Advocacy, autism, Autism and The Media) by Estee on 04-04-2011

More Magazine is a Canadian magazine that “celebrates women over 40.” I eagerly sought the April 2011 issue as I knew that Kim Pittaway, who did this article also about Adam and myself, also wrote an article about Michelle. I learned during the interview process that unlike most reporters I had been dealing with the past few years, Kim had been spending a lot of time with autistic people.

I met Michelle in 2006 during the Joy of Autism: Redefining Ability and Quality of Life event I organized. We spoke and I also sought advice from her about the very title of the event, to what autism advocacy from might look like in order to be fair to autistic people. It wasn’t all easy for me in those early days in trying to understand what “advocacy” could be. We all want to “help,” and as a parent with a young autistic child, I wanted my son to be accepted and understood. It was easy to get confused with the fundraising models to which I became accustomed; before I bore a child with a disability. I learned from Michelle who helped me at the time, to use the following words when I founded The Autism Acceptance Project whose mission became “to help autistics contribute to society as autistic people.” The words continue to resonate in Canada where we still seek to change the autistic person.

Autism advocacy, for the most part, fails. It has failed because it relies on pity models — poor person with fill in blank. I’m sure they don’t want to be like that. I’m sure they want to be cured; to be normal. So glad I’m not like him/her. I should give money to help that horrible circumstance. Not to be too cynical here, but study the Disability Rights Movement over the years and one will learn why the whole way we look at disability, autism and how we raise awareness must change. Pity models don’t support people to get what they need in order to become active members of our communities. They suggest that people have to be normalized in order to do so.

Bringing Michelle, Laurent Mottron and Morton Ann Gernsbacher, to speak about the short-comings of ABA and the science to support autistic intelligence at the event in Toronto came with a price tag. We received a lot of nasty letters. I learned afterwards that many ABA advocates actively boycotted the event. Yet, I learned, and continue to learn, so much from Michelle and individuals like her. As a fellow woman I admire her intelligence and tenacity in a world where it’s easier to just get along rather than actively push for truth in order to fairly support autistic individuals. As a mother of an autistic son, I am grateful for her work.

A quote from Michelle in More Magazine:

I became involved in [the Auton case — when a group of parents fought the BC government to pay for ABA treatment and Michelle intervened] becuase the false and unethical claims and practices by both sides had a drastic effect on the well-being of autistics in Canada,” says Dawson. “I intervened as one such autistic, who had lived the consequences and would continue to live the consequences.

I was an early autism parent, that is, Adam was not even two years old when I began reading Michelle’s work at No Autistics Allowed, when my emotions ran high and every parent of an autistic child at the time urged me to enrol Adam in ABA (early intervention behavioural therapy) as soon as possible — before it was “too late.” Or else, they said, he would be doomed to a life with autism.

Well here we are and Adam is about to turn nine. I don’t feel we are doomed, even if we have special needs.

Michelle’s work along with Dr. Mottron’s continues to be a part of my journey as Adam’s mother. If you are interested in doing the same, here are some websites to follow:

No Autistics Allowed
The Autism Crisis
Michelle Dawson’s QT Board

Autistic Kids Not Prone to Contagious Yawning???

Filed Under (Activism, Autism and The Media, Autism Theories) by Estee on 17-09-2010

“The news
Just came in
From the County of Keck
That a very small bug
By the name of Van Vleck
Is yawning so wide
You can look down his neck.

This may not seem
Very important, I know.
But it is. So I’m bothering
Telling you so.

A yawn is quite catching, you see. Like a cough.
It just takes one yawn to start other yawns off.
NOW the news has come in that some friends of Van Vleck’s
Are yawning so wide you can look down their necks.”

How ironic that Adam and are reading Dr. Seuss’ Sleep Book nightly, these days, and I open The Globe and Mail to find a reiteration that autistic kids are not prone to contagious yawning.

I have to yawn. While I haven’t look at the actual study itself, it seems that “The diminished tendency to engage in a contagious yawn suggests autistic kids’ may miss subtle cues that tie them emotionally to others,’ the researchers write in the Journal of Child Development.” (The Globe and Mail, p. L5, September 17, 2010).

I’ll just say this: While autistic kids may have some difficulty with their imitation skills, yawning seems spawned by something more physiological. Adam yawns when I yawn… a LOT. Perhaps he’s part of that 11 % of autistic children who do yawn according to Geraldine Dawson. Adam will not yawn, however, “on command.” Sometimes I wonder if my little autie just doesn’t see the sense of it. I mean, some things we ask our children to imitate can be kind of silly. Therefore, I would not compare contagious yawning skills to pure imitation skills.  I’m not certain if the comparison should be used in determining if autistic children can figure out those “subtle cues.” As I said, natural contagious yawning for Adam comes, well, naturally.

Science has not at all discovered the nature of yawning. I feel compelled to qualify this just in case our autistic children may be prematurely described by yet another, interesting, but perhaps not quite precise theory. Yet, that’s what we get in the autism community, don’t we? A helluva a lot of theories, and autistic kids are the prime target.

“The yawn of that one little bug is still spreading!
According to latest reports, it is heading
Across the wide fields, through the sleeping night air,
Across the whole country toward every which where.
And people are gradually starting to say,
‘I feel rather drowsy. I’ve had quite a day.”

Miraculous or Naive?

Filed Under (Acceptance, Activism, Advocacy, Art, Autism and Intelligence, Autism and Learning, Autism and The Media, Communication, Development, Joy, Parenting, Politics, Writing) by Estee on 24-05-2010

It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

The Long News

Filed Under (Autism and The Media) by Estee on 01-04-2010

We are bombarded by news stories. If you are like me, you might remember CNN in its earlier days, when it was significant to watch the fall of Soviet occupation in Wenceslas Square or the Berlin Wall coming down (I was in Berlin the year before and in Wenceslas Square just last year — side note…doesn’t really matter). The only two other times in my life that were highly memorable in terms of news-watching was the first man on the moon in 1968. I was only three but I remember it well. Of course, we all remember that atrocious day of 9-11.

Today, I hardly watch the news. CNN is a plethora of pundits commenting on the news events. There is hardly a representation of real news anymore; by that I mean interviewing the people who are part of the story as opposed to onlookers who comment on the story. Thank you very much, but I think we should be reading such opinions from The New York Times or other older styles of news media that we held in our hands and contemplated. I for one still buy The Atlantic, Harpers, Utne Reader among others which I find intelligent and thoughtful. The demand for creating news 24/7 has not only overloaded us, but in my opinion, forces us to live on the periperhy of life, contrary to what we thought it would enable us to do. A lot of news doesn’t make us more engaged in the world. We might hear a lot of what is happening on our planet, but we are neither partaking in it, nor absorbing it well.

I don’t think I need to explain that this is happening in autism too because it is such a hot topic in the news. It’s a very fine line because all this new media (it’s sheer quantity), can also be an opportunity. Yet, in my experience in dealing with the media, there are journalists and programs few and far between that will devote the time, energy and funds to researching a topic for a great length of time. That documentary “Positively Autistic” (see one of the videos on the sidebar of this blog) took eight months to produce! Lani Sellick its producer, spent months calling and visiting people trying hard to understand the rick complexities that embody autism. The piece was approximately fifteen minutes long and now CBC’s The National — a program that had been defined by the late Barbara Frum — has now cut such pieces from it’s news program because the format has changed and those pieces were “too long.” No one wants to spend the time or the money really getting to the heart of an important story. It’s all fast and furious and well, empty.

I have been a member of The Long Now Foundation for just over a year.This excerpt, from the TED conference is about The Long News. Not only does the Long Now Foundation raise questions about why short term thinking about our world is a problem, the immediate point that comes to mind is how this short-term “autism-is-a-problem-that-must-be-cured-asap” can be especially dangerous. Many ethical questions begin to come into play.

It’s Always Darkest Before The Dawn

Filed Under (Acceptance, Activism, Advocacy, Autism and The Media, Discrimination, Inclusion, Single Parenthood) by Estee on 01-03-2010

Now I know first hand what it’s like to feel dark inside — when my child is disorganized and appears to be in pain and cannot tell me. These are the toughest moments when a parent feels helpless. Also frustrating are schools that claim they are there to support autistic children but will not take “non verbal” autistic children. Believe me, the conditions out there in order to participate in society are just plain ridiculous and prohibitive, so I’m going to make a strong plea to everyone — INCLUSION IS NECESSARY. Stop pretending to be inclusive to autistic children if they have to “talk and walk” at the same time. It’s not autism-friendly! Argh.

Yet when I am feeling depleted, I fight it and I will urge every single one of you to do it too. For each one of us has that power, if we can be aware and monitor what’s happening to us inside. It’s important to remain honest with ourselves and then be able to step back from those feelings that can suck us down.

I reach out for help. I call people. I call Adam’s aides and therapists for help when I’m feeling overwhelmed. This is a good place to start. Always call for help and bring in only those who support you and your child in the manner that you need. Do not bring people in who will put you down, make you feel lower or try to fix your child. The most important thing you and your child need are love and respect.

One thing I know FOR SURE, is that there comes a time in life when we really do have to muster every bit of strength we have and resist the calls of the demons. The echoes of The Autism Everyday video and “wanting to drive over the George Washington bridge is like a siren call and this is why this kind of marketing — the kind that exploits and capitalizes on people’s pain — should be illegal in my opinion. It’s not that I disrespect Allison Tepper Singer for her genuine feelings that might be expressed cautiously in a book or another venue. It’s about how those feelings were exploited for capital gain: make autism desperate enough and we can raise money to cure it. Well, I’ve said it before and I’ll say it again: I believe this kind of marketing (consider type of presentation, method of delivery etc.,) is more harmful to parents than ever.

People shouldn’t have to stifle their feelings — that doesn’t help and can an adverse effect. I’ve read Sylvia Plath’s The Bell Jar and it’s all about wanting to die. Beautiful work exists because of honesty and by sharing honest feelings we do not feel alone. There are expressions of hopelessness everywhere — and some quite well-written in fact. Yet these can be used to empower and can also be used as cautionary tales. It’s the latter cautionary tale I wish to dwell upon. People must reach out in a world where literature on loneliness prevails. In this past weekend alone, I’ve found one book on Lonely by Emily White (it destigmatizes loneliness and it is an interesting read) and two articles on loneliness and depression (The New Yorker and a review of White’s book in Saturday’s Globe & Mail). It feels as if we live in a technologically hooked-up world that seems, in fact, to be coming socially undone.

This morning I find the following story on the murder of an autistic child (see below) which is why Autism Acceptance is so vitally, URGENTLY important — not just for parents but for society at large. Society must begin to realize the incredible challenges that families with autistic kids have when they are NOT included and accepted. If we are a community, then EVERYONE IS RESPONSIBLE. I take the story of Gigi (excerpted below…almost there) very seriously. It shows that no amount of money can fix anything. Better spent, is money accommodating autistic children and making sure every child gets a fair shot at being included and educated. If I have one dream, it would for The Autism Acceptance Project to raise more money to advocate more strongly that acceptance is a social responsibility, and to make a place where autistic kids can be fully accepted and receive an amazing education.

My former neighbour Mike Lipkin is motivational speaker extraordinaire and author of several books, one called Strong Mind, Strong Heart, co-written with Dr. Bernard Levinson. I’m very good friends with his exceptional wife and herself an inspiration, Hilary. Re-reading some of his chapters after a very challenging couple of weeks with Adam reminded me how certain thoughts are defeating. Mike reminds us:

“Are you worried about your children’s future? Are you unsure whether you’re on the high road or the low road? Have you noticed that everyone you talk to has a different idea of where you should be going? Are you slightly confused? Are you a little exhausted by having to make so many decisions all of the time? Are you being bombarded by massive change? Is your brain frying?” (p.88)

I think that many parents can say yes to all of these questions. We worry what will become of our children and where they’ll end up.

We want our kids to go to school, to have places to be social and be accepted there too. With so much negative information getting into our brains from the media or from individuals who believe that an autistic person is only better once they are cured, there are real dangers that lie ahead. By reading Gigi’s story (still coming, I promise) it was clear that she was overwhelmed with trying “fix the problem.” When one discovers that autism cannot be fixed or changed, but perhaps begins to appreciate that while there are challenges, there are many advantages, life begins to look a little less desperate. I urge everyone to consider the list of what an autistic child contributes to the family instead of what s/he takes away. While the rhythm of life certainly changes, it is only those who can adapt and learn to walk to the beat of the new drum who will find joy in life. An autistic child demands that we learn to go with the flow.

Mike Lipkin talks about this a bit, albeit not about autism specifically. He talks about how life “will hit you hard like hail from the sky.” (p. 79) He says that people need to learn how to be resilient. “Resilience is the ability to heal after a hurt. It’s the knowledge that bad things happen in this world, but just because bad things happen, it doesn’t mean you’re bad. People who lack resilience are people who invest too much negative meaning in what has happened to them. They obsess on the dark side of their psyche. They focus on why the knocks happened to them. They ask the fatal question:

Why does this have to happen to me?” (p 80)

We all have dark days. Autistic people also have dark days and learning to be resilient is hardest for them. The world is tough and it hits you hard. And you have to fight it with everything you’ve got. Gigi Jordan could not:

A few weeks ago a terrible story unfolded in a posh midtown Manhattan hotel where a 49-year-old mother, Gigi Jordan, was found “babbling and incoherent” beside the body of her eight-year-old son Jude, dead from an apparent overdose of ground up prescription pills, including Ambien and Xanax. Later it was revealed Jude was autistic.

In his press conference, the stunned and shattered father, estranged from his ex-wife and son for the last two years, said he had no idea what provoked his ex-wife to kill their child. “To be honest, she was the most wonderful mother I’ve ever seen. She left her business, left everything, just to take care of Jude.” Her oldest friend, Dr. Marcus Conant said, “She went to clinics all over the country looking for new treatments, grasping at straws, trying to fix the problem.”

The kind of hopelessness that Gigi faced might have been averted. Also new as a single mother, I know those nights when I feel I have no one to call upon. In those moments, I know I have to pull myself together again and remember that it’s always darkest before the dawn. It doesn’t have to be Adam that can make me feel this way. It could be a separation, a loss of a loved one.

Mike Lipkin would agree:

“One of the greatest sources of stress afflicting the people who come to us is the discontinuity that prevails everywhere. Just when our clients thought they had finally figured out a pattern, the pattern splintered into pieces again.” (p. 88) That pattern in the autism world is expectation. If we expect our children to change, to be fixed, to adapt easily, we cannot be resilient parents.

Mike suggests that we “sketch out many different paths” in our minds to “create an array of different possibilities.” He reminds us that not only is life unstable but that “as human beings, we have deep-rooted desire for certainty and stability, ” and quotes Francis Bacon who nearly 400 years ago said, “If a man begins with certainties, he shall end in doubts. But if he will be content to begin with doubts, he shall end in certainties.”

In autism too, there are no certainties. The article that talks about Gigi, talks about how the autistic brain “hardens” at the age of eight, and it would make any parent want to cry if you’ll believe it. Again, the article is somewhat misleading. It’s only through misleading expectations that a child must be fixed before the age of eight or all is lost that sends many parents into a tailspin like Gigi. Not only is this inaccurate about autistic people, but it’s this type of limited thinking that can stifle us and make us feel hopeless.

I for one know that autistic people continue to learn and the possibilities are endless as they are for any human being. Instead, as Adam also turns eight this April, I will ask myself how Adam and I can make a difference in the lives of others who are also on this path. For helping others and having this self-ascribed mission helps us. We have opportunities to learn. Every hard-knock and experience is another opportunity to learn. We get our hard-knocks every single day every time a school or a program doesn’t appreciate the special contributions Adam can make to the world. It’s enough to make me want to start my own school — and I know many other parents feel the same way (can we harness this energy??).

Do not listen to the media, but trust that your child is a human being filled with potential. The media will always be there, and sometimes it’s just a good idea to turn it off or give it a hearty guffaw because you will be tempted to feel sorry for yourself and this will deplete your capabilities as a parent. Become the kind of warrior that fends off the demons of the mind and the media. Remember that every child has difficult times and when our autistic children have them, we have to take deeper breaths, ask for help and figure out where this journey is supposed to take us alongside our children. While times seem a little easier for those with special needs, there’s a whole lot of discrimination still going on in our communities. WE have to change this together and support each other in our efforts.

“So once again, here’s one unchanging Life Principle over and over again,” says Mike. “You need a Still Mind to think through the confusion and noise. The only way you can master the cacophony on the outside is to have harmony on the inside. Without inner harmony and quiet, you cannot have a Strong Heart. And without a Strong Heart, where are you going to find the resources to not only brave the darkness, but lead others as well?” (p. 90).

It looks like all of us have to lead. It is also important to stop listening to others and begin believing in ourselves and our children.  We are forging ahead with a new demand in this world and that demand is that our children be integrated into our communities. For this, we need to be brave.

Adam and I had a tough weekend adapting, still, to his new home. So much so that I’ve asked his aide to bring him home early so we can begin implementing fun activities here and teach him some structure. It is my hope that he will swagger on his turf soon and we can both get back on the path of working on our mission which is to help others along in the Inclusion Process.

Yesterday morning, after a very dark night, I stopped my inner fight. I leaned in to Adam (who has difficulty speaking but not always understanding), and modeled language (this means that I say a sentence that he might wish to say himself in order to show him that I understand) while he was trying to soothe himself by playing on the computer. “I’m not feeling well, Mommy,” I said in a soft sweet voice. Immediately, Adam stopped what he was doing, came over and leaned his head of feather-hair into my arms for a hug, and we remained like that for a while. As the day wore on, Adam became calmer and things got a little better.

This morning, the sun came out and his happy grin made me shine inside. If we can hold on, the sun will come out again and the possibilities are endless. But you have to believe it. I hope by sharing a bit of our story and adding some inspirational words from my friend Mike, I have helped anyone who is reading this a little too.

For more reading on how to cope with dark days and how to take care of yourself in order to care for your child:

Still Mind, Strong Heart by Dr. Bernard Levinson and Mike Lipkin (not specifically on autism but created for inspiration)
More Than A Mom by Amy Baskin and Heather Fawcett
Autism Acceptance and Survival Guide by Susan Senator

Other Back to Basics Autism Books:

The Autism Answer Book by William Stillman
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
Autism Handbook for Parents: Facts and Strategies for Parenting Success by Janice E. Janzen
Parenting Your Complex Child, by Peggy Lou Morgon

Rethinking Autism…dot com

Filed Under (Acceptance, Activism, autism, Autistic Self Advocacy, Celebrity Advocacy, Websites) by Estee on 21-12-2009

Rethinkingautism.com is a site that has taken The Autism Acceptance Project goals to a new level. “One video at a time,” they seek to use the same tools that media use in shifting and reframing the dialogue about autism:

Oops they did it again… on CNN

Filed Under (Autism and The Media) by Estee on 09-12-2009

Every time I watch a new episode on autism from CNN, I’m ready to turn off all phones. For certain, I’ll get a call about ABA,  and that maybe Adam “should have had more of it,” and then there is all that dark talk about autism and “sieges” and gosh, it’s no wonder I want to write about other things. All we want to do is live our lives in peace! Why can’t autistic people be permitted to do so without constant references that they are not good enough with pithy reports by CNN? Heck, why isn’t inclusion, autism and disability (all in the same sentence) headline news?

Giving the benefit of the doubt to Karen Siff-Ekorn and her family,  I wonder how CNN edited this piece as it so neatly angled to support the recent Geraldine Dawson study on Early Intervention. The CNN piece, with Siff-Ekkorn, described how ABA recovered her son Jake. The implication here is that ABA is the Early Intervention in question by association. Yet, no parent can claim that one particular kind of therapy can “recover” all autistic people. No one parent or clinician can speak for all individuals and all families. In all fairness it might be more accurate to say that every autistic person responds to different teaching methods, well, differently. “Evidence” abounds, but the discussion of study-design is conveniently left out. In every statement or claim,context is everything

When Adam had a rigorous ABA program for the first two years after his diagnosis, his anxiety got in the way of his learning. All of those M&M’s and “look at me’s” sent him through the  roof. One therapist even tried to physically wrestle him into submission (there is one thing that is certain — like his mother, Adam will not be wrestled with). It is definitely not a successful way to teach Adam.  It seems like so long ago now, but remembering actually gives me a lot of pain.

I definitely see that Adam has benefited by early play therapies, occupational therapy, visual supports, keyboards, computers,  and recently we restarted speech language therapy because it didn’t make much sense to do SLP on a child who couldn’t talk well enough and got extremely anxious when he tried. Once ready to “articulate,” he is now responding very well to SLP.  In other words, you can’t fight mother nature, but you can support her. We’ve all got to try and figure out the best approach for our unique children and understand when certain autistic children are ready for certain approaches.

In our case, ABA would have created anxiety in Adam that would likely have been irreparable. And let’s face it, every year, there are better therapists emerging, integrating a variety of methodologies and eager to understand how an autistic person learns well. Adam today is a happy little boy (still with some sensory and anxiety issues that are being managed) who has begun to draw, who speaks more this year than last year, who types now independently, who is learning his life skills well, and who can do more with his body than he could a few years ago. These achievements can never be taken for granted.  It saddens me if people do not acknowledge his marvelous successes (because he remains autistic) for he really does work very hard. But that is not, thankfully, our experience here on the blog. I hate to think that there is an autism archetype he must measure up to — that paradigm of recovery. What if he doesn’t talk fluently or require an assistant in his future to live?  I mean, the boy must continue to learn and feel successful and gratified in his life!  Does being fully independent matter? I know we all want it, if not covet it, but is it that important under the circumstances? If an assistant or a visual aide or a keyboard is what he needs to be in the world, then isn’t that enough? Being a parent of an autistic child in this day and age requires constant internal dialogue and discipline.

I would also like to refer readers to Kristina’s Chew’s blog and others who do not on any account suggest that their children have “fully recovered because of ABA,” but who discuss ABA and autism thoughtfully.  Few  parents of autistic children will dispute that engaging an autistic child is important, and all of us do this in one way or another and for lack of proof (mainly in our very own living rooms) have tried a variety of approaches.  Also very important living with autism is idiosyncratic rest and play,  (I say this because autistic play is deemed abnormal by our society and many, not all, ABA proponents, while autistic adults have discussed how vital and important that play can be to their development and understanding of their environment), and being with family and friends, even if “being with” looks a little different. So is living within one’s community as a respected human being. So is acceptance and support of children past those ABA years into adulthood. If autistic people have to recover, then what of those adult years?

I cannot crystal ball gaze, but I am grateful for what Adam has been given in life so far, and as all parents, I fret about middle school and high school lest someone tries to attempt to beat him once again into submission, or turn him away.  I guess mom is still wrestling with the issues that CNN creates when it presents one-sided recovery reports — lack of acceptance, lack of supports, lack of employment opportunities and the like.

The “full recovery” tales are dangerous without balance and without discussing what can happen by suggesting that normalcy, the way we have come to understand it in our society,  is the Holy Grail of being, or in this case “becoming” human. CNN once again only tells half a story.  They also stigmatize families like my own where we are accused, by insinuation, of not doing enough for our children when we are doing absolutely everything humanly possible to create the best future for our kids. Actually, in autism politics, we are living in a Catch-22 nightmare where we can hardly speak a word about a success or a word about a challenge. No matter which way we all turn as autistic families, we are criticized, which is why I want to give Karen the benefit of the doubt and congratulate Jake on his wonderful achievements — not because he “lost his autism diagnosis.” I congratulate all the autistic families and all of their achievements too, not that I matter so much in all of this except for in Adam’s life, but isn’t this what we should all be doing?

CNN does not like seem to cover stories often enough about autistic people living in adulthood who require supports, assistants, and who, living as autistic people, or “people with autism,” live “successfully,” (or perhaps they may feel they do not, which also warrants fair discussion). It is once again the hero-story or story of some triumph and autism must be the enemy. Naturally, I disagree with that kind of manipulation.  CNN especially doesn’t like to pick autistic people who would take issue with the angle of that recovery report in order that the complex issues really get covered.  CNN does not report stories  like ours often enough, where families work so hard to provide the love and supports our children require to communicate, learn and, if physically possible, talk more, while leaving out “the siege” angle and uncovering more complex notes that joy does exist with intense struggle as simple as is the metaphor of life. I would like Adam to talk more, and he is every year. But if he does not talk consistently in his future, I will not judge him nor myself. I made that deal with myself a couple of years ago every time I gasp for air in some fleeting moment of panic.  I will not say our trials at “recovery “were unsuccessful for that word is not in my vocabulary in the way that we typically refer to it.  Let’s face it, our definitions of “success” need some serious rethinking.

So like the Brittany Spears song goes, CNN, “oops [you] did it again.” You told the world (again) that recovery is possible and thereby suggested that this is what all autistic people and their families must do at all costs, and yet our families remain unsupported in all stages of life.  You run the risk of sending millions of parents and families into despair if their children do not “recover” in the manner you show and suggest. You endanger about eighty million disabled people in North America with the suggestion that disability is not an acceptable state of being human (not that all disabled people understand autism, this is true, or that all disabled people are in agreement about disability issues). You tell half a story, and it is not the story of so many families. There are many stories of great happiness in families out there living with autism as there are stories of “sieges,” and much of life’s success comes from how we regard and deal with things. Stories like this one do not help with the need to be positive when there are many pressures beating upon us.

And believe me, even with all of this, the joy does exist with autism too.

Top 50 Autism Blogs

Filed Under (Websites) by Estee on 18-08-2009

Tagged Under :

We’ve been rated again. Only this time I rather enjoyed reading the thoughtful summaries of all the blogs they rated. No particular perspective is favoured here on this site as the spectrum of political viewpoints are all represented.

Visit this website for the latest top fifty autism blogs: http://nursepractitionerschools.org/top-50-autism-support-and-research-blogs/

CBC’s “Positively Autistic” Wins Its First Award

Filed Under (Autism and The Media) by Estee on 11-08-2009

Last year, I participated in this CBC documentary “Positively Autistic,” which first aired in October 2008. The documentary has received exceptional positive feedback and has won it’s first (note how I write first) award:

http://www.newswire.ca/en/releases/archive/June2009/27/c2007.html

RTNDA announces 2008 National & Network Award Recipients

    TORONTO, June 27 /CNW/ - Some of the best news stories and programs in
the country were honoured tonight by RTNDA Canada, The Association of
Electronic Journalists. RTNDA Canada presented its coveted Network RTNDA
Awards at an event in Toronto.
    National awards were also presented to winning stations in Central
Canada. Similar awards dinners have been held in Moncton, Edmonton and
Vancouver over the past several weeks to honour winners from other regions of
the country.
    The awards program was the culmination of a conference focusing on the
future of local news. "Congratulations to all the winners" said RTNDA
President Cal Johnstone. "These awards underline the value of local news
coverage to Canadian communities."

You can watch the CBC documentary located on the right-hand margin of this blog.

The Benefits and Consequences of Telling True Stories

Filed Under (Activism, Adam, Art, Autism and The Media, Critical Disability Studies, Discrimination, Ethics, Family, Writing) by Estee on 06-07-2009

This post is part of a series of posts I am writing on Writing About Disabled Children.

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We are all storytellers. The only difference is that some of us write things down. The other difference is that some writers are also artists — able to craft a work in order that bigger ideas are suggested, open-ended, and not written as if to strike a blow to the head. In other words, it’s much more effective to create the sublime message in a work of art in order to convey an impactful message, oftentimes, than simply stating the message itself. Art is the bridge to understanding humanity.

In my last post Why Do We, As Parents, Write? (see several posts down), I mentioned that I was trying to respond to a series of self-inflicted questions. Several of the questions all have generally to do with the consequences and benefits of writing about children with the additional peril of writing about disabled children — usually children who cannot speak for themselves.

As I’ve noted, I have numerous reasons for raising these questions at this point in my four-year blogging history. Firstly, I am going through a divorce. I hesitate because the story I would tell would still be influenced by my being too close to be self-deprecating, no matter what the circumstance. I tend to think that all great memoir writing about difficult life circumstances has this element in it: the ability to see oneself and one’s on imperfections even if the action towards you was unjustified, as well as the ability to be compassionate to characters who have done unjustifiable acts. In what I believe to be interesting narrative, everyone has their reasons which leaves out judgment. To understand others and their motivations is the foundation of all good writing and formulation of interesting characters. Of course, I am, as they say, still “too close” to write about my personal life, if ever I do at all. I will likely have more interesting things to write about.  In order to tell really good stories of truth or fiction, we need to understand our perspectives and assumptions at a particular point in time. Without dissecting them, our writing and characters remain flat.

One concern I have is for my son to read what I write about him. I want him to feel that I was real and wrote about him with truth, compassion and dignity. Compassion is the key to telling true stories, I believe. I want him to think that I was a good artist who didn’t have to expose every detail, but got the bigger point across. So, I have made a commitment to him and to myself to write when I feel I can truly step away from things that are still emotionally charged. It’s not that I want to be emotionally distant – indeed my emotions are a full part of my experience and they need to be written.  It’s the manner in which I’m able to write about them that matters. It is the art and the craft of writing that can elevate a trite piece of writing to a piece that lives long after we’ve moved on.

The next issue I am having is one of revealing details about my son at this point in his development, perhaps influenced also by a divorce process (and thankfully both mom and dad are doing an excellent job as parents, still) as the vulnerable need not be made more so. This is my paranoia as his mother and I realize I am supposed to think about such things. It is my job and obligation. Even if he is resilient and strong (as we parents generally come to realize about our growing children), we are on our guard nonetheless. Writing about the vulnerable – be it children, disabled children who can’t speak for themselves, disabled adults, the aged and so forth, requires us to think much more deeply about how we write.

As I see Adam develop, my attitude has changed and softened significantly than at the time of his diagnosis. I think there is a huge urge of many parents to write about the diagnosis because there is narrative tension that is still interesting to the outsider. This is when most writing about autistic children really gets done. We read perhaps too much now (just think that a few years ago there was very little), on that D-Day or “diagnosis day.” There is a lot of interest from new parents of disabled children to relate to the pain and conflict of early diagnosis. Little is written about learning how to live with a disability in the sense that the worry dissipates. Mostly, what we read are memoirs about how parents seek to cure their children instead of learning about themselves as parents in a world that is filled with different kinds of people. Donna Williams remains the top of my list of autistic writers who not only write beautifully and artistically, but tell a story that goes beyond childhood. The tension is still there, but the story isn’t sensationalized for the sake of selling books.

Let’s face it: our lives are not like everyone else’s, which is why so many of us need to write.  “Suffering has always animated life-writing,” says Arthur Frank who has written about his own illness. Indeed that familiar theme of finding peace, a spiritual awakening, an appreciation for life itself, is a kind-of triumph-over-struggle theme that appeals to most of us in a challenging world. I think of Audre Lorde and her cancer diaries and poems that I devoured after my two cancer surgeries last year. Her honesty and artistry helped me see myself as fully human even with my stage of dwindling self-image and pain.

Yet what is especially disturbing to me is when that theme is diluted into a sugar-coated story, only telling of the good stuff — you know, how all our children are “angels” kind of rhetoric.  To my chagrin, I’m afraid that much of the “acceptance movement” has turned saccharine and in it a fear to acknowledge the challenges and the pain as well as the joys.

Conversely, when all a parent does is complain about how horrifying their disabled child is and disruptive to their lives, without qualification or deep circumspection, is equally if not even more disturbing, for we get a sense that we are not being told the whole story, or perhaps a story with a particular agenda and worse, we are being told that disabled children are a blight and burden on society thus threatening their right to exist. So in order to write a good memoir, and how we define what is good if not ethical life writing is what’s at stake here.

Frank says, with regards in how to respond to illness and disability, “what is done within the body, what happens in relationships and how existential and spiritual attitudes change – is presented as a sequence of choices. The writer’s identity becomes crucially implicated in how she or he makes these choices: a person’s responses are a measure of his or her character.” (p. 174 The Ethics of Life Writing).The stories we choose to tell and how we tell them in the case of writing about our children, is therefore an indication of our character.

Somewhere along the road to raising children, either at the time of birth or later on, our expectations were thwarted. That in and of itself has been enough to warrant many people to approach us and say, “you should write a book!” But how good of a book? To what end? What are we trying to achieve?  My soon-to-be ex husband even came to me regarding the circumstances of our divorce stated “if I were you, I would write a book about this.” What an invitation!! Not that I will necessarily take advantage of it for my own personal gain, for that is not the point here.

I did, in the past, write about many encounters with friends and family regarding discussions about autism and their reactions to Adam to which I was angry (an honest emotion), but used as illustrations of a day-in- the-life of an autistic family. I felt that these examples were especially important to illustrate how our society has been trained to react and respond, no less treat, disabled people. Those encounters in mere blog posts were enough to achieve that tension. In as far as maintaining relationships is concerned, some managed to stick by me and support the purpose of the posts, and others couldn’t handle seeing themselves within the narrative. I once received an email from a friend’s husband referring to my writing as “getting things off my chest,” thereby diminishing my feelings, our significant experiences and my writing. Yet, I write and express to get things off my chest, that’s for certain. It’s just that I hope not to sound pathetic doing it. I hope the writing transcends the individuals to illustrate the more important points —  and the point that we all have much to learn.

But isn’t that what writing, gossiping, telling stories is all about? I am making a general assumption here that all gossip is negative, which isn’t necessarily true. I will also suggest that gossip, for the most part in my view often has the sole intent of denigrating another person. So in telling true stories, intention matters.

Telling stories, it can be argued as parents of disabled children, is still important. It is especially important that we as parents write  well — truthfully and with dignity. I cannot say that I have accomplished to my satisfaction, the “writing well” part. To accomplish this, it takes great deliberation and like anything, practice. To live with disability in the family, as in any other oppressed minority group, is to also live politically whether we like it or not. This adds another sensitive dimension to our writing.

Many parents of typical children will not experience this to the same extent, if at all. For me to tell those stories during those early stages of Adam’s development were exceptionally important in navigating our way through ignorance and understanding it – my insecurity about such statements admittedly came of a place where I was also in their shoes, that is the shoes of the ignorant – completely unaware of the full extent of disability itself — meaning the community, the politics, the meaning and history of disability, the lives. Should I keep these stories to myself or do they benefit not only myself in my growth as Adam’s parent, but also others who are on the same path? Would those people still be my friends if I hadn’t of told those stories?  What is friendship anyway if we cannot be honest? Right…? (I am happy to report that the really great friends still hang around even if rigorous disagreement or debate is involved). Of this I would emphasize that the intention is important with regards to telling our stories. It might just be difficult after all, to be a writer.

In her essay, Friendship, Fiction and Memoir: Trust and Betrayal In Writing From One’s Own Life, Claudia Mills  discusses the risks of writing about one’s family and friends and seeks the meaning of friendship as her guide. Using Aristotle and Kant — “we seek the good for the other for his own sake and not our own,” (Aristotle) and “The strictest friendship requires an understanding friend who considers himself bound not to share without express permission a secret entrusted to him with anyone else,” (Kant)   –Mills painfully deliberates, as if her conscience is eating at her: “What contexts are we primae facie justified in sharing the stories of our most intimate associates with others?”

She suggests that she couldn’t have relationships if she couldn’t talk about them – that we benefit from talking about them and notes how secrecy can be “corrosive and damaging.” Yet there is a difference between talking or writing at someone else’s expense, as I said, in order to hurt them. While telling the truth may be hurtful to others, or be outright embarrassing, it is this shame that is the most costly to our peace of mind. There is nothing more liberating than living your life out in the open. But living mine out in the open does not necessarily mean I have the right to live Adam’s out in the open for him. So we must choose our vignettes and words carefully, without over-editing which also takes away from the authenticity of an interesting story. Mills takes the easier route and chooses to write fiction, even though her family and friends seem to recognize themselves in her stories.

For parents with disabled children, this writing can be a cathartic process and a way of breaking down the reductive view of our disabled children. Arthur Kleinman, in The Illness Narratives, suggests that people who are ill are reduced as people in terms of their pain and debility, or their illness. That proverbial medical view of the disabled person as a mere patient instead of a complex individual remains a part of the demoralization process. Instead, Arthur Frank turns it around. He calls his personal narrative a “remoralization process,” an act of telling a counter-story to the ones that we see all too often in the news and Hollywood and much of literary media where disabled people are used in the background like bridges to the “real” characters. In looking at narratives like Michael Berube’s Life As We Know It, and Thomas Murray’s, The Worth of A Child, and Cranes’ Aiden’s Way, among other parental narratives, Frank points out that we as parents write in order to break down the assumptions – that our writing can be “acts of justification” as we write to justify our children’s right to exist.

As I continue my writing and work to become a better, more artistic writer (I am hopeful with much more work), I am aware that to summarize Adam as a series of impairments, to finalize his character in the narration, is what the medical community already does. So I want to avoid this at all costs. “[Reflexivity] is moral work, since what’s at stake is personhood and its entitlements.” Most of us are all too aware of society’s rush to categorize our kids, to judge them, reduce them instead of viewing them as people with a right to be included in everything.

This is a great risk that we undertake as parent-writers — this act of finalizing our children, defining them  and thus imposing identity that has really not yet been fully formed.  As Frank notes about the writers of the exceptional memoirs cited above, “They resolve this dilemma, and keep a dialogue open, by refusing to say any last word about their children. The child’s future – his or her horizon of possibilities – is kept open, though this requires nothing less than redrawing the horizons of human possibility itself. These writings become teachings in the morality of respect: not principles of respect, as in Kantian respect for persons, but practices of respect, which the writing not only describes but reflexively exemplifies.”

I hope in my next post about writing about children, I will be able to compare the recent writings of Jenny McCarthy and Temple Grandin’s mother’s older book A Thorn in My Side, in order to illustrate what I consider to be problematic in the name of our children’s dignity and telling our true stories.

As for my story, it’s easier to dance around it than tell it at the moment during my set of current circumstances. I am only left with the deliberations of what and how to write next.

References:

Credit for the term “narrative tension” goes to Arthur Frank in his essay, Moral Non-Fiction: Life Writing and Children’s Disability, from The Ethics of Life Writing.
Claudia Mills, Friendship, Fiction, and Memoir: Trust and Betrayal in Writing From One’s Own Life, from The Ethics of Life Writing, edited by Paul John Eakin, New York: Cornell University Press, 2004, pp. 101-120
Ibid, p. 102 & p. 110-111.

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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.