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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Everyone has something to contribute.

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It will take me a while to settle my thoughts as I head down this new path, and to say what it is I want and need to say. This blog keeps me going a lot of the time. It is but one outlet for this autism mom. These days I’ve been using Facebook more because the feedback is plentiful, supportive and the discussion boards can get really interesting.

I’ve also turned to a core group of people. There is the team for your child and the team for ourselves as parents. As a single mother who, with the exception of my supportive parents and friends, must climb mountains for her choices, I continue to learn the value of turning to these people. I’m grateful to those of you, and you know who you are, for being there just to talk as I work out the next climb.

Now, I need another beer as I work out the plan, before I write any more. For the rest of the day, I’m taking off my climbing gear, waiting for Adam’s laugh, and watching bubbles.

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This is a day I always promote. Autistic Pride Day occurs on June 18th and the t-shirt designed above is by Jason Ross. Let me use Jason’s words to describe the importance of the day, since Jason is autistic himself:

Neurodiversity is just as it sounds, it is knowing how we are special, unique, and have a very our very own belief system that should not be imposed on other people. Why do we have Neurodiversity? If we didn’t have different kinds of minds and we were not wired differently, we would be considered the same. Wouldn’t that be boring? What would life really be like? Before people consider every one thinking the same way, we should be considering how others think too. There are many different kinds of minds and different ways of thinking and different ways of living. The only thing we can learn to do the same is having proper social skills to incorporate ourselves to function with each other to form relationships. It does not mean change our way of being and thinking. We need different perspectives in the world to teach each other about life. However, we do have free will to think of our different way of being, but that does not mean you can impose your ideas on others. It just means speaking your mind and telling your stories. The way we all can fix society is by any one in the world communicating their views to share it and evaluate what others say, but not getting angry or upset when we hear what they say. Listen to the suggestions and/or thinking the other person may be telling you, and adjust it to your state of being to become your unique ‘YOU’. Any one can believe whatever they want to, and can be what they want to be to succeed in their life, but they must choose to accept it. Otherwise someone will always be influenced by another and eventually Neurodiversity disappears. How sad would that be? Think about it!

I have been reading lots of blogs and Facebook posts these days. I continue to read the debates between terminologies: “a person with autism” or “autistic person.” The discussions illustrate the importance in how humans define and see themselves. The commentary suggests the tenuous ground where the term Autism still lies. The debate is important to discuss society’s responsibility to understand and accept people no matter what their label or inclincation. We are just human, after all.

It is also true that no person is their label. “Classified” individuals are treated as second class citizens despite the intention that labels are meant to be beneficial. A diagnosis can be a huge relief for parents and autistic individuals because there is no more mystery on why there are differences in learning and communicating. Parents and individuals can, if they are willing, stop berating themselves. Yet, we continue to segregate labeled people. The psychological impact of labeling and marginalization can be debilitating. While labels are invented to serve, they can also limit ability because people with learning disabilities are not believed to be individuals who can contribute to society or succeed. When a young person believes that of themselves, this is the devastation. A label can make it difficult for people to see what they are good at. This is but one more reason why Inclusion is an important goal for all people. We are always more than our labels.

Autism, like any other learning difference or disability is not equitable with intelligence. Thinking exists outside of reading and communicating. Explaining this to the to a person who only hears about autism from some charity ad that espouses that autism must be cured can be demoralizing for the person advocating for themselves or for their child.

When I read the Toronto chapter’s Autism Speaks’ ads in Canada’s Globe and Mail recently, I always want to ask– since they are raising money for genetic testing for autism — how such research will help with “early intervention?” I think the question we should ask is not only how, but what kinds of teaching would help a very young autistic child? Also, what about the autistic adult who gets looked over past the age of twenty one?

What is the end goal in helping the autistic child (I will continue to use “child” because the premise of the research is help infants)? Is it for them to respond like other children? If so, why is it acceptable to expect that of the autistic child and not of the dyslexic or blind one? In any classroom, a blind person has the right to ask a teacher or Professor not to make visual references in order that they can learn better. A visual learner also has a right to ask. Do you think this is hard to accommodate? It’s not. Teachers possess varying abilities and we can appropriate them to different groups of learners. Autistic learners are not offered this choice. They must learn to “behave” like “normal” people through ABA despite my own anechdotal evidence here at home that many tools, and an understanding of Adam, is the most helpful teaching toolbox of all.

Finally, dear fundraisers and researchers, if we were to genetically screen for autism, what percentage of new parents do you think, under the current bioethical climate (can I call it that?) will be the beneficiaries of “early interventions” for their babies? Is this marketing supposed to suggest that if we know the genes that cause autism we will understand everything there is to know about the autistic person, including how to teach them?

No matter what you think about “autistic person” or “person with autism,” let’s think about the bigger picture. Our children and the way they view themselves (hopefully as whole, entitled and able to give back), are the reason I celebrate Autistic Pride Day…every day. Please support and buy Jason’s t-shirt.

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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

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“You can’t say your child is great,” I was told when looking into services for Adam. As part of our growing process, we have to know what is available to us. I was discussing how Adam has many challenges and is also:

-affable
-affectionate
-likes to be social but has difficulty at times…

“He sounds great,” interrupted the woman I was speaking to on the telephone who had asked me what Adam was like. “Just so you know, I have a child with Down’s syndrome. It’s a drag to have to paint the worst scenario, but in order to get services, you just have to.”

Why subjugate our wonderful children, young and old, to terminal fates? You remember — the ones “worse than cancer.” Why must we have to paint a dimsal picture, or view people with disabilities as something horrible and devastating to us and society? This is the very reason why we’ve had such misrepresentation that hurts autistic people, and why parents are literally forced to represent ourselves as desperate, our children as hopeless without certain types of services. People with challenges have a right to support. At the same time, we have a right to love and cherish our children and believe in them. We have a right to think our children our terrific, great, a joy, even. It’s not sugar coating anything (back in the day, I was accused of this). My child needs lots of support. I do not wish to embellish anything. I simply want to tell people what he needs as his inherent right. As it is, the services and supports for autistic people here in Ontario are neither diverse nor robust.

If there is a thing called fate, I think it’s terminal for all of us, isn’t it? I sure wouldn’t call autism a fate worse than cancer and to be honest, I find it really hard to speak about my son in a way that I find demeaning to him. There are facts, and there are exaggerations. We all want to make the best of the lives we have, and so we should — with the support we need, and the love in our hearts that we just need to express.

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I’ve written a lot about Adam over the years, carefully finding the right vignettes to maintain some semblance of privacy and dignity. Sometimes I simply gush. While there are some struggles, as a one-time-mom, I cannot help but relish in everything Adam does. He is, and I’ve heard this someplace else, my heart literally walking about the earth. Although autism is important — we’ve had many valuable discussions through our blogs — it also doesn’t matter in the way I love my child. Adam is Adam, and he has brought me great joy.

Forgive me for the slow-coming blog posts these days. I have been thinking a lot about Adam and this explosion of language, his talking, communication — his expression of feeling and will.

I’ve also written occasionally on how to write about our children and of course I am thinking a lot about this now. I acknowledge that Adam is not a willing participant in this, although I’ve tried to get his “permission” to write about certain things. It seemed tenuous in that his communication was difficult to come by. I would ask Adam to type a yes or no to certain things I wanted to make public. It was sometimes difficult to tell if his yes was intentional as he would either quickly point, type or even say a “yes,” in an effort to fulfill my need for an answer. This has changed in the last while. Adam’s intention is much clearer now.

In my last post, I wrote about watching Adam express his will in “early intensive” therapy. Although I was emotionally attuned to him, I see his intention even more now watching videos in retrospect. Therapists talked too loud. They didn’t sit and listen. They didn’t join in with him, early on, in his version of games and communication. Amidst a mish-mash of discrete trials and play therapy, I heard a faint “don’t” in the video when a therapist tickled him. I am certain, as much as I like to think I am listening to Adam, that I spoke too much and didn’t give him a chance. I’m certain there are moments I also didn’t hear him. Children are often not listened to. Non-verbal autistic children are, for the most part, ignored.

Still, while I must lay down some rules for his safety, Adam also needs a safe place where he can express himself, to me. For Adam who may read this when he gets older, I hope he will understand (and perhaps forgive…or maybe he will cherish me for this, I cannot predict) his mother’s need to express herself. I began blogging in 2005 (fomerly joyofautism.blogspot.com) during a time period that was highly volatile and polemic in autism, and in an atmosphere where everyone wanted to change Adam, simply because he is autistic. I’m not saying this atmosphere has changed. I have, however, changed. As Adam’s mother, I value the learning of discipline, rules, and being educated equally as much as finding one’s own way, creativity and uniqueness. We all must learn it and so, Adam was born perfect.

Although I still wish to feel his feather-like hair brush against my face, and although I still want to hold him like my baby, he is no longer. He is expressing his sincere need for independence and his need to be heard. I search his face for that baby I birthed and I see an older boy take his place.

I want to say farewell, not to blogging or writing about autism necessarily, but perhaps to a type of blogging where I made certain assumptions, and a type of writing that talks about one’s child as a cherished baby. Adam and I, in addition to all the changes we have experienced that have formed us today, have entered an entirely new phase. I’m watching how both my outlook and writing will too.

So, I will continue to choose my words carefully. Here, I mark a new era.

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There are two therapists in that video, in front of him talking fast and loud. He is sitting in a chair and they insist that he stay there — he small enough that every time he tries to escape they physically replace him onto the chair. The video begins with Adam crying, squirming and trying to get away. He is so small, such a baby. He is saying many things, although they are hard to hear because the therapists are talking so loudly compared to his forming, warbled articulation. As one of the therapists replaces his tiny body in the chair, she tickles his stomach.

“Don’t,” I hear him say in a super tiny voice. I hear him say it now re-watching these, but I may not have heard it back then. I may have not heard it in the frantic effort to get Adam to do and say what the therapists wanted him to say. I would have not heard it over their loud voices.

I am watching these videos six years later, as Adam has developed and changed so much. I feel we have very much entered a new phase of life together, a new phase of understanding our lives as an autistic family.

Adam then went to his Vanguard device after telling me to shut off the TV. “I am uncomfortable,” he pressed. I suppose I can say, said. We call it his talk box. The Vanguard device, which is a series of pictures and words can be programmed to make sentences. Things like verbs, feelings, activities are all categorized on it so Adam can tell us many things. Sometimes Adam can type sentences on his computer, sometimes he uses the Vanguard and sometimes, especially this past weekend, Adam can talk. Adam talked more this past weekend than I can remember in his lifetime.

I have set out to watch those videos on my own without Adam present. As I watch them now, I am highly disturbed. We made him sit so young, and forced him to watch the therapists. Although this was NOT a strict ABA program, we did attempt to “programme” Adam in an ABA format. The therapists talked, they wanted him to answer, they dangled coloured circles over his head so he would repeat the colours, blew in his face, repositioned him on the chair — all at a roaring rate. I cannot imagine how completely overwhelming that experience was for Adam.

All I had in the beginning was ABA therapy. Then came along RDI (Relationship Development Intervention). I thought I kept helping Adam better each time I learned about something new because no one offered us any other solution. While I tried to follow my instinct, what was available to us wasn’t keeping pace with the values I was forming about Adam as an autistic person. Still, Adam was forced to “conform” no matter how much we said it was to “engage” him. Later, we became more adept at involving ourselves in his games. Later, we became quieter with him.

As Adam’s mother, I sometimes want to cry when I watch these videos. He was bombarded. In no way was he respected as an autistic person from the get-go. A couple years after that I definitely learned more and tried harder. Yet I wonder, since we are still talking about finding genes in autism and intervening earlier, what kind of life experience our autistic children will have and remember, when they are programmed to be typical.

I find it so ironic that Adam talked the most he had in his lifetime this weekend, and he told me to turn off one of those “early intervention” videos. I suspect he does not feel good about it at all. What makes me feel so guilty, because I love Adam so much, is that even though I searched for ways of assisting him while trying to respect him, he may have not been in those earlier years when he was so vulnerable. He couldn’t really communicate in words then. He has severe difficulties, even now, to do so consistently. As Adam becomes his own self-advocate, I just found it so striking to have this juxtaposition between the old videos against the Adam of today. Even back then, just because he wasn’t talking, he was still a person. I suppose I could say he was ignored like the moment when he said in a voice so quiet, “don’t.”

I think if someone had shown me this when we received the diagnosis, if autistic people could recount their stories and be available to all “new” autism parents, my life may have been calmer and Adam may have had better supports that accepted him as autistic. I write this with forboding, wondering what kinds of early interventions are being concocted for infant autistics. Certainly, I changed the approaches after those first two years, and he became happier for it. He has had many challenges, but he is also now talking. As he does so, while it is nice to know what our children are thinking, I can tell you it is not a solution. It is not the Holy Grail. We will have many years ahead of dealing with Adam’s unique way of functioning in the world, and I don’t always expect it to be easy. Communication is important. Acceptance is vital.

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I was very excited when Pascal Cheng told me that Larry Bissonnette and he, both of whom I brought to Toronto several years ago, and Tracy Thresher were traveling the world to change views about autism. They travel to Finland, Japan and Sri Lanka to change minds, attitudes and debunk myths which was documented in the film Wretches and Jabberers. We have learned from anthropologists like Roy Grinker in Unstrange Minds, among others, that the views about autism around the world can be less forgiving because of cultural differences.

 Adam was diagnosed at 19 months of age as a hyperlexic, “high-functioning” autistic boy. Over the years, however, he shows ability, is very bright and intelligent, but Adam has real communication difficulties and more “classic” aspects of autism…so dx is always precarious in the early years. I think of the very different experiences between Adam and Larry — how the world has changed so for autistic people and I am grateful for the generousity of autistic adults. 

As a parent in this for just over six years now, I have to say thank you to everyone who put forth this effort. I often dream of Adam traveling the world, talking to other people, helping other people. That’s my dream, I suppose, and not necessarily his, but that’s what parents tend to do. So even if Adam chooses another path,  I am thrilled that Larry and Tracy are forging a path for all the “Adams” who will grow up very soon.

“We are more like you than not,” says Larry in the following trailer.

That’s for certain.

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In response, I got a comment stating that I should attend Autreat. Well, I had in 2007. Back in my earlier days, because the climate among parent communities was so negative, I sought out autistic individuals who shaped my view of autism and assisted Adam and I on our journey. I thought instead of having people sort through 800 pages of archived Joy of Autism blog (on the right margin), I’d dig this up. It’s a copy and paste job, so  I apologize in advance if the formatting appears off. No matter how I tried to fix it, it just kept reverting into a mess.

I called this post:

Are We Listening?

The audience waved their hands in the air – the deaf sign for waving. There were others who

rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in

the front and squealed in acknowledgment when the speaker said, “just because you

don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to

process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other

setting, this highly intelligent, non verbal autistic eleven-year-old may have been

asked to leave, or others might have stared, thinking that he didn’t

think of anything at all. Yet Drake kept doing this. He sat longer

than any other eleven-year-old I’ve ever met and made his noises

in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter, a keyboard with a small

screen that speaks for him after he types his sentence.

I sat in the room and wished Adam was with me, his soft fiveyear-

old hair brushing my jaw, snuggling up to me as he always

does, and then taking breaks to jump up and down. Yet, I felt

comforted in knowing that he would be there next year, and the

year after that. I felt comforted that all of these people are him

years from now, and how privileged I felt that they were paving

the way, for it is a tough way, like swimming up a rapid flowing

stream.

It is rare to sit in a room with so many other autistic people, some

walking back and forth in the lunch room humming to themselves

in a heightened perhaps even ecstatic state, where I can only

imagine in other less accepting settings, would be frowned upon.

When I came to squeeze into the small space where this young

man hummed to deposit my lunch tray, he politely moved away to

make room for me, extremely aware despite the fact that some people

might believe otherwise.

When I saw him next time in the leisure area, he was asking others

to play a board game with him. Other autistic kids were hanging

out together, and sprawled themselves out on couches in front of

the TV, not unlike other teenagers. Around the grounds, people

wore badges that indicated if they wanted to talk, if they would

only talk to people they knew, or if they did not wish to talk at all.

There were many times I wanted to flip my own badge that

indicated the latter – as I am a person who likes to absorb and

observe, yet have been taught to socialize and be diplomatic and

suffer from a compulsion to keep that impression going. Although

it’s a skill I’ve acquired, I still find it exhausting. I wished that

those badges existed at the many functions I have attended,

where most people pretend to be something that they’re not, or

interested in things that others say that they actually have no

interest in at all. I consider all the wasted time I’ve had to spend

doing “small talk.” and all the time I spend in explaining life as we

know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by

trees. My hair unkempt and my skin moist from the humidity, I

unraveled. I could do what I needed to, to think. We were free to

lie down during lectures, or roll up and be comfortable on the

otherwise uncomfortable frayed wool couches — remnants from

the 1970’s. No lights were on in the summer heat, the hardworking

garbled hum of old air conditioners tilting precariously in

the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried

to figure out how to manage all the issues confronting autistic

people today, how to give another message to parents that there

are more options than they are aware of – because they don’t hear

it when all they hear about is ABA (in Canada specifically). The

atmosphere was welcoming, where fear and confrontation were

strangely absent. Strange because it is a sad reality of autism

politics these days – where some non autistic people never get

exposed to disabled people to hear the real views and issues. It

was strange as it was relieving. This was autism, and it was

comfortable. I didn’t have to be appropriate, I could say when I

had to leave without a guilty fuss. No one will judge me here. And

no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced

before, and I will want Adam to come again so he too can be

fortified. Adam’s fortification is what’s tantamount here, as I try to

raise him so that he knows who he is with autism, amidst a world

that doesn’t understand it or explains it inappropriately. It is

important that he understand himself as not a defect, but as a

person. It is why we as parents cannot accept misery rhetoric,

because no matter what level of “functioning” (that term means

nothing as it has no bearing on either intelligence or awareness), no

autistic child should have to grow up in an inhospitable

environment that threatens their self-worth. Inhospitable and

unsafe environments are those in which we seek to normalize and

reward normal responses to tasks where the autistic response is

never acknowledged, rewarded or accepted, thus valued. By never

rewarding an autistic person for being autistic, we threaten their

self-esteem and identity. Most will grow up being confused

because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand

autism – because most of them currently do not. They do not yet

understand how an autistic person learns. They turn to

operationalized methods that all seek at this time to make the child

not autistic, without valuing the autism. DRI and RDI are also

designed to “create a mind,” or have a child “play normally” to

which the autistic audience gasped in disgust. What are those

“gurus” implying? That the autistic people who could sit and listen,

and contribute, either verbally or in writing need to re-create their

minds in a fashion that suits the rest of the so-called “normal”

population?

I surmised that many parents are and are reluctant to give up

ABA becasue they may not understand that there ARE so many

options and so many opportunities to educate and for a great

quality of life. The latter is what hopefully unites us. What

disunites us is the definition of what that quality of life entails – a

life with or without autism. I seek the former because I have seen

that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car,

but rather, what you make of your life, and your attitude. Autistic

people are capable, and how can we express to parents who only

see — particularly those whose children who are more profoundly

affected by the disabling aspects of autism – sensory issues,

anxiety, no spoken communication – that their children are there

and aware.

How can we express that the most important thing – our

children’s right – is to be who they are, but to provide AC

(augmentative communication) in the absence of speech, instead of

trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must

learn how an autistic person learns, and not expect a typical

response that can render an autistic person a robot. (All an autistic

person ends up learning is to respond the way the instructor wants

so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a

way that is not natural – for our benefit so WE can feel satisfied

that the child has responded – that the child may in the future as a

result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept

your autistic child for who they are because this will allow

them to know themselves. Pave the way for acceptance and yes,

teach. But learn first. Learn how an autistic person learns and keep

trying to adapt until you find the method that clicks with your

child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project,

but rather, treat them and raise them as a child. Model actions so

that a child can learn. Do not expect typical answers to “what is

this?” and other typical questions. Find out ways to pull out what

the autistic child does know. Do they know and answer better on

the computer? Then use that. Accept all forms of communication,

for they are valid and real. We are all obligated as parents to find

the AC that works best for our children. That is their right to have

over and above all those other therapies and monies wasted on

“behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to

understand their sensory needs. Do not offer artificial

reinforcements, like “good talking!.” They are fake and the child

will know it. Accept echolalia as sometimes the only language a

child can retrieve, particularly in moments when they are

overwhelmed, and then listen to what their body language and

faces are telling you.

Most parents want the best their our children. The difference is in

how we regard autism – a medical disease, which it is not, or a

disability with social implications, in other words, we have to deal

with the societal barriers that obstruct the opportunities for our

children. We cannot accept the latter. We must accept autism and

move on with the real barriers – the attitudes that will continue to

proliferate segregation.

We need to be advocating for inclusion in the school system and for

the accommodations that need to be made to acquire that. We

need to educate others as to the value of doing this – for all

children, not just the disabled ones – in cultivating sensitivity and

understanding. We need to teach our children how to advocate for

themselves – yes, even the non verbal ones. And for those who are

more profoundly affected by the more disabling aspects of autism,

we can seek the help of other autistic individuals to be mentors

and to advocate for the services that do not degrade and oppress

others.

The one thing we must do is to make other parents aware that

there are so many options about which they hear little or are

belittled by an ABA movement that continues to espouse

inaccurate facts about ABA under the guise of false scientific

“proof.”

We need to stop participating in genetic research studies which

determines only “prenatal risk” and threatens the existence of

autistic people. This research is done under the guise of providing

“better and earlier interventions,” which are non existent. What

babies need is love, support and engagement like any other baby.

The only purpose of this research is to determine genetic risk

factors. We do not hear about research that seeks to help autistic

people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more

disabling aspects of autism) with respect (respecting the autistic

person’s right to exist) and realize that there is life beyond an

over-simplified “cure.” Further, helping the more disabling aspects

of autism (anxiety, sensory issues) can exist outside of a “cure” for

autism.

I urge every parent (but for those who visit this blog, I bet I’m

preaching to the choir), to actively seek out the alternatives and

become proactive in not accepting strategies that change your

child to “appear normal” because they will ultimately be very

damaging to their self-image as teenagers and adults, and we will

have greater problems to contend with later. There are options

outside of ABA which takes time from you to actively watch and

listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least

dangerous assumptions” about your child. Or as Douglas Biklen

said, “presume competence.”

“The least dangerous assumption states that in the

absence of absolute evidence, it is essential to make the s

assumption that , if proven to be false, would be the least

dangerous to the individual.” (Zach Rosetti and Carol Tashie

from the Communicator, Autism National Committee Newsletter,

Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not

look you in the eye are “not there” or “not aware,” or “cannot

speak for themselves” is an extremely dangerous assumption. All

people can speak for themselves in many different ways.

Are we listening?

PERM ALINK POSTED BY ESTEE KLAR-WOLFOND AT 6/29/2007 09:20:00 AM

23 COM M ENTS LINKS TO THIS POST

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“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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I do not want to suggest that people with more “profound” handicaps are not equally valued as other people. When I read the version this morning, I wanted to ensure at least here I could make that clarification. Also, I had suggested that there is no scientific evidence to prove that early behavioural interventions (as early as infancy!) remedies autism –that part was cut. That very idea that we should diagnose and detect earlier in order to “fix the problem,” was a very important point that did not make printing.

I had noted that with our views overall towards autism as a series of “fouled up genes” and “hiccups” in the human DNA, we are already basing the science on a premise of prejudice. At least, we all know that this is the very real possibility in terms of how that science will be used.

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Today Carolyn Abraham reports on the front page of The Globe and Mail the recent publicity surrounding the findings of an international group of scientists trying to uncover the genes that comprise autism. Throughout the article, Ms. Abraham describes autism and it’s “genes” as a hiccup — “genes fouled up by long stretches of missing or duplicated pieces of DNA.”

Doomsday is coming, or it could come. I know that there are parents who dread having a child with any disability. I understand that no two families are alike in the way they approach the subject. Yet there are families who do cope well; those of us who value the children we have and balk at the concept that humanity can be distilled into DNA. Of course, it can in a sense, but the complexities of being human cannot. I could tear this article apart. I am utterly offended by it, if I am to admit my leanings. I cringe at the thought of my son reading that he is a “hiccup” or a series of “fouled up genes.”

Just as important is the idea, the very scary idea I might add, that we can terminate an autistic pregnancy. The study co-author Peter Szatmari admits that the prospect of the commercial test that will prematurely reach the market “makes me nervous. I don’t think we have the science yet to nail it down. This isn’t one gene but a profile of genes, a pattern of susceptibility, not cause.” As reporter Abraham writes, “in the direct market age, the market rarely waits for more research.” In other words, in a world that hardly understands disability, how disabled people live and feel, disabled pride, autistic pride, and rarely hears or listens to the voices of autistic people, parents may rush to pick up a screening test. Without this knowledge, what do you think is going to happen?

Then it occurred to me: Adam’s parents, that’s right — his father and myself and his entire family — would likely have many of those genes — those “fouled up” ones in one way shape or form. Maybe this would mean I would not be here, his dad, his grandparents, his Bubby or his Zaida. “In all,” says the Globe article, “the study spearheaded by post-doctoral fellow Dalila Pinto at Sick Kids, identified more than 100 genes affected in the people with autism, many of them forming a part of a network that governs how brain cells grow and talk to each other.” Perhaps this comprehensive network is part of all of us that make up autism. Autism is an accentuation of our very human traits.

As far as I’m concerned, this is doomsday approaching fast IF the dialogue about how we use science — how we implement knowledge — better be linked with a dialogue about not only what it means to be human, but the very right to be disabled, autistic and yes, what can be wonderful about that in our world that has been taught to fear disability. There is a social aspect here that is running the show and we are a highly biased society against those with neurological differences and further, we write about autism as if it’s the worst thing on the planet.

In our family, and in many others that I know of, it is not. Premature reporting of scientific findings without a balanced argument (or even acknowledgment that there are people who prefer to be autistic) of this kind runs a very high risk.

Another discussion that may help our own:

The article referred to in Nature here.

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What is justice, Sandel asks his audience? Like Aristotle, Sandel agrees that justice cannot be determined without an understanding of the following:

1) What abilities we recognize as worthy of honour and recognition and,
2) the purpose of our social institutions.

It seems to me that these are, in fact, the essential questions that we can ask ourselves as we discuss and debate the bigger questions like “what is autism?” and “what kinds of help do autistics need to contribute to society?” The question pertinent here, of course, is how and if we regard autistic individuals as worthy and how we prove that we believe it.

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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.

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I’m not an expert in “how to argue,” but I’m learning. It’s never to late to learn and improve, particularly when it comes to an advancement of how we discuss the plethora of views concerning autism. What is largely missing is a critical analysis and an understanding by most of us how to engage in ethical debates. The following consists only of a couple of sources found on the Internet:

The Ethical Argument:

Thinking Straight

Critical Analysis:

Deakin University
University of Sussex
Learn Out Loud (podcast)
The Open University Learning Space

Books to Consider Regarding the Art of Argument, Critical Analysis and Methodology:

A Miniature Guide to Critical Thinking: Concepts and Tools (this is a nice small guide that one can use everyday) by Dr. Richard Paul and Dr. Linda Elder

How To Read A Paragraph: The Art of Close Reading, by Dr. Richard Paul and Dr. Linda Elder

A consideration on Setting Guidelines:

I also thought this was a good comment on setting ground rules from a site on multiculturalism and why we might have to constantly reconsider their construction:

” Recent critical analysis of common ground rules have resulted in a collective reconsideration of their role. This is because, too often, ground rules that are put in place, whether by an educator/facilitator or by participants, privilege the already-privileged groups in a dialogical experience. For example, in a dialogue about race, white participants will often support ground rules meant to keep anger out of the discussion–ground rules focused keeping them comfortable. When we consider who is protected by ground rules like “do not express anger,” it becomes apparent that, intentionally or not, they protect the participants representing privileged groups.

While I do not advocate dropping ground rules altogether; I do support the idea of seriously studying these issues and the possible ramifications of ground rules that might ultimately support the status quo by providing safety and comfort for those who, for the sake of their own learning, most desperately need to be made to feel uncomfortable. Consider opening this conversation within your class or workshop or among colleagues and challenge yourself to make sure that the discussions and dialogues you are setting up do not further oppress historically oppressed people. “

And,

From, The Way They Argue Now: “They should resist the temptation in order to cure liberal proceduralism of potentially inhumane tendencies; after all, procedures without persons do not necessarily lead to justice.”

Please feel free to add more references in the comments section so that we can all spend some time re-visiting the method of autism discourse.

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

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When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?

Yada yada.

Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.

It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.

Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.

Isn’t this what we’re aiming for — to live without question?

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