Estée KlarThe Joy of Autism

As I begin to come out of my jet-lagged delirium from my thirty hour flight from Sri Lanka, I can talk more about my trip. I realized that yesterday when I was answering a friend’s questions about it. As I talk, the thoughts crystallize. It is only now that I’m beginning to realize that I was on the other half of the world; only now that I realize how much I miss it and want to see more.

“You can do it again,” said my friend, shifting her briefcase from one hand to the other at the doorway. I am sitting waiting for Adam to finish his O.T. session. She is also an occupational therapist who worked with Adam for several years, but I regard her as a friend since I’ve known her for so long. I suddenly felt a quiver inside my belly, a sick feeling. I realized, as I heard Adam laughing in the next room, that I longed to go back as much as I long to hear that laughter. When I travel, I long to be back with Adam. Later at home, I found myself googling “mother’s guilt over taking vacations.”

I’m pretty good at dealing with mother-guilt, that is, I can put things in perspective. Adam’s father and I discussed Adam going to Disney with him to break up the time I was going to be away. On the one hand, I was a bit sad that I wasn’t able to see Adam’s reactions to his first visit, yet on the other, I did not want to deprive Adam of the opportunity. I have to be honest — it, in part, appeased my guilt and anxiety over leaving him. While I was away, I was so happy to see beaming pictures of Adam there. Apparently Adam had some difficulty adjusting to the hotel room, but he loved the rides. It is but one of the issues arising from moving houses especially since the divorce — Adam’s issues with his environments really started at this time.

While at a place called Ulpotha in Sri Lanka, there were two European children running around. They had arrived after a visit to Israel, where their mother was from. Ulpotha is a yoga retreat in the jungle run by the villagers. The parents were hired to manage the guests for six weeks (Ulpotha is only open to the public for a small part of the year). I watched the children play freely, despite the poisonous snakes and other creatures. They were having a ball and socialized with the guests. I had wished and wondered about whether Adam could make the trip. What would living with monkeys and villagers who take care of this self-sustaining village be able to provide for him, I thought?

I can’t say that I wasn’t having some “the rice patty is greener on the other side” moments. What would getting away from the pressures and superficialities of Western life teach Adam? What would cultivating food and housing and belonging to a community provide for us? I kept thinking of the isolated box we live in back home, and how neighbours rarely talk to each other, and felt dismayed. What kind of community do we really have, I ask myself as an adult who in part continues to perpetuate the kind of city I live in. While we have our conveniences, I believe all of us feel this lack. I kept wondering about my own ability to live in such circumstances and felt in awe of Rupert Isaccson, the author of Horseboy, who traveled all the way to Mongolia with his autistic son, Rowan.

I did have moments of longing for Adam more when I saw the children, as much as I knew that I deserved and needed my time away. When one of the parent’s asked why I didn’t bring Adam, I didn’t want to get into a lengthy explanation about parent schedules or how such a short trip would make it difficult to travel with him as an autistic person. Traveling across the globe with him would require more practice on longer flights, breaking up the journey and longer stays in each location. The diet is different too, so it would take a lot of preparation.

So I guess there a are a couple of issues here: imagining some future travel with Adam in order to expand our experience, and feeling guilty or even guilty for not feeling guilty. Perhaps there are so many lessons for me to learn for myself and the way I live, and in my efforts to create a meaninful life with Adam.

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I have serious jet lag. I returned on Saturday, after supper time. It was a journey of thirty hours. The route home was Colombo-Bankok-Beijing-Toronto. On the last day, I realized I caught my first Sri Lankan cold and I suffered all the way home, making the thirty hours feel like sixty. Seriously, you can’t tell the difference after the first twenty-four.

I returned home to my cherub. Adam was waiting for me and the transition from his father back to my home was a happy one. I was worried the little guy would be pissed with me for being gone twelve days. The opposite was true. I tried to avoid making face-to-face contact with Adam, since I had come down with a serious sniffle, muted by a continuous in-flight feed of Contact C. He would have none of that. Adam grabbed my face, our round fleshy cheeks squished together, and he continued to kiss mine all over. Ah well.

We are happily reunited and I am on the mend. I woke at midnight tonight and forced myself to say in bed until three this morning. There is a wisp of white snow on the ground and I gather today will be another gray one. I am recalling all the sights and sounds of my trip, especially the warm light and emerald colour of rice patty fields.

I will send my cherub off to school in a bit. Later, I will hopefully find some words and sentences that do justice to my first trip to Asia. In twelve whril-wind days, major flight time, and time zone changes, I still feel silenced by overwhelming differences. My experience is still blend of flickering images and sensory recollections. As I blend back into my daily life here, I realize it will take me a few more days to articulate what I’ve experienced. I know full well that I’ve only taken a small sip of the land of Serendib.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I am leaving for a trip to Sri Lanka at the end of this week. Travel is something I’ve always done, and now that I’m divorced, Adam goes to his father. I’ve always been a traveler, and Adam has been a traveler because of it. He has been to quite a few places for a little guy. I remember my first trip on an airplane was when I was nine years old. My grandparents took me to Germany for the first time. Adam is going to be ten this year and has been on an airplane every year since he’s been a baby. I always advocate taking an autistic child places, no matter where, with readiness and preparedness. I’ve always packed a special bag for Adam and I talk him through every aspect of our travel. These days I get compliments just about every flight: “I’ve never seen a child so well-behaved.” I want to laugh and announce, “and he’s autsitic too!” People don’t expect autistic children to be well-behaved on flights. Yet I’m working the entire flight by anticipating all of Adam’s needs.

Traveling is mine. It’s an interesting feeling — being excited to go halfway across the globe, being so far away from home in a completely different culture. I also know I’ll miss Adam as much as he will miss me. I will send him pictures of myself as I always do, prepare a calender of days until mom is home, and talk to him once in a while. These feelings do not stop me from persuing my interests now. I know I am a full-on mom with him and doing my best. I know that it is also important to let children go to manage their own feelings. It’s a good lesson to let children know they are not being abandoned — that parents can go out for dinner or on vacation, and will return.

I know I have to calibrate, to have this time to do what I love as much as I try to nurture what Adam loves. For some people it might be a hobby. For me it’s Wanderlust and food for creativity, writing and perspective, and even parenting Adam.

So I’m about to journey. I’ll miss my little guy, but as in a small of resemblance to mom Rahna Reiko Rizzuto, who wrote Hiroshima In The Morning, it is my need to fulfill the other bits of me that need filling. I really appreciated the way Rizzuto was honest. I feel the book is important in redefining what mothers are expected to do as opposed to fathers. She continues to be a good mom to her children — something the press failed to really discuss in the whirl of controversey — except that her arrangement is more like a man’s. She sees her children once a week and every-other weekend. I’m not at all suggesting I do not wish to be a mother by mentioning her book. I wanted Adam so badly and I continue to want to mother him. I think her book is important for women to read, though, in making sure that we don’t lose sight of ourselves.

A man would not feel so guilty leaving his child for work or travel. A mother on the other hand, feels compelled to write a blog post like this one.

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I contributed to this book which is AVAILABLE NOW on Amazon.com.

Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them. — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science –Steve Silberman, senior writer for Wired magazine.

I can’t wait to get my copy and read the other essays!

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

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

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

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

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

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Adam and I went to see Seussical at Young People’s Theatre in Toronto. Adam likes the theatre more than he does movies.

I’ve always refused to stay isolated and Adam doesn’t like to be, either. He likes people and outings and even though we’ve been through ups and downs of anxiety, we tend to overcome our obstacles — our own and the ones that seem outside of us. But as usual, I digress.

Adam was his usual attentive self to the play. There were a series of questions afterwards and the theatre writes them out in the program for parents to work on at home. I also sent the questions to school today. I always wonder why there are not more field trips and plays for autistic children. Thankfully, Adam is going to the library a couple of times a week.

Many people don’t think autistic people understand or “get it,” and that taking them to a play or an outing would be a useless endeavour– one that would require too much effort, or parental fortitude and heartbreak to withstand stares. I’ve never been to Young People’s Theatre when a young person doesn’t make a whoop or two. Adam’s not yet a whooper, he’s more of a giggler. Perhaps because I see some parents of typical children sternly turn their disturbed heads (yes, my perception and interpretation…my bias), I refuse to look around. It’s not that I don’t want to. I’m actually thinking to myself hey, who’s the cool kid having the really great time!

Adam’s eyes were glued. His grin was wide, his eyes beaming. It feels so good to watch him enjoying himself. Since he’s been young, even though he has real challenges with expressive communication, he’s given me fantastic glimpses into his perception and understanding. His very attention to the play was proof- positive. Today he wrote me an email (the school lets him email me). One of his teachers asked him what he did on the weekend, not knowing the play at all. Adam replied by typing “elephant sat egg.” Horton was the guardian of the egg. He would not leave the egg or abandon the Whos on that little speck of dust in this mix of Dr. Seuss stories, no matter how awful and skeptcial the Wickersham brothers and other townspeople are to him. He endures the abuse, the naysayers, the people who call him a chump.

I know I have to keep working with others to show how to get more typed communication out of Adam and not give up. At the same time, I’m also thrilled that people are trying and doing. I know I need more patience. I worry and wonder how many hours in the day autistic kids are working on labels, mands and putting together Mr. Potato Head. Even though practice is always essential, and the goals are about attention and things other than the label or putting together a head, the work it takes to collect the expressive communication is big and we need to focus more on exposing autistic kids to interesting material, even when we don’t get immediate reward of a child’s recognition. I think our kids should be asked more complicated questions and working on really interesting age appropriate material. Of course, there’s also the fact that the stuff autistic kids are interested in can seem boring or useless to the rest of us. We need to learn how to nurture these interests. Also beware of objects that autistic children become attached to. Clinginess to baby books doesn’t mean an autistic child doesn’t want to read chapter books. I am reading Diary of a Wimpy Kid to Adam (he giggles), and have no idea yet what he’s getting from it. Although I do know, as but one example, that when we get wild weather, he’ll reach and start reading a book for teens on weather systems. The baby books are a form of familiar for Adam. He uses them to comfort himself and to create order in a world that can often be overwhelming. They don’t indicate what he’s also interested in, or what he’s capable of.

Readiness is essential but there can also be many opinions on what makes an autistic person “ready.” Is it the ability to sit still, act normal, attend for long periods of time? If so, an autistic person may never be deemed totally “ready.” If these are some of the prerequisites to “readiness,” how far held back is the autistic person who’s otherwise sopping up so much in the environment? Adam got his musical notation, to his music teacher’s surprise, very quickly. Learning to “attend” is a social “norm” imposed to people who find that really challenging. It’s not that I don’t think Adam shouldn’t learn that, but it’s not the only thing he needs to learn. Adam needs to learn things that interest him, and like other children, we don’t know what interests our children unless they get exposed to things. His movement and activity is likely the way he learns best, and despite my repetition in life and here on the blog, he is often treated like that round peg being squeezed into a square hole, no matter what my beliefs.

Help, hello. Is anyone there? I’m trying to write with the greatest of care. As I convey ideas about Adam over and over, we need to settle him down safe, on a soft bed of clover.

I guess you can say I’m holding on to this egg.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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“Ma…. M. Ma… M. ” That’s what Adam said to me last night before bed, before he woke with a fever this morning, no doubt having caught the summer cold. It also happens to be Toronto’s record-breaking heat wave. As I wandered in his room with my early morning “gotta wake up” voice, Adam seemed woozy. I sat on the side of his bed and felt his forehead and body. He felt like an oven. There is not a day when he’s ill that I don’t want to take away all his aches and pains.

Last June was a difficult month of transitions — heck the last three years have been full of them. I find it difficult to write when we are going through something because I have to process a lot of my own emotions and ways of looking at life. My convictions are tested. I’ve learned that I’m glad I have some.

Losing an aide worker of seven years, another change in school, a new camp…Adam demonstrated his distress with an obsession with looking behind every door which lead to bolting. When Adam is anxious, his body twitches and he started to lightly nibble at his arm, and sometimes mine. If I had to describe it in my own words and perspective, it was like Adam had to explore everything as if it was a flight response. I would say that this was all about fear and uncertainty. He will able to tell be better when he is able. He is getting more able as he types more to me.

At first, I did what any other parent would do and asked him to stop. Drawing attention to it made it worse. When Adam goes through a state of anxiety, it is hard for me not to as well…like his illness, I wish I could take it away — all his pain. I wish it would stop. As a single parent, I take on the brunt of it too. My parents are a wonderful support system for me as are the people closest to me, but I take so much on emotionally where Adam is concerned. It is sometimes so overwhelming, and I find myself strewn across my bed when he is asleep wondering how I can go on. I find myself in that futile trap of worrying about the future.

Then something clicks. I think of Adam as a person, as I think of myself as a child — all of my fears and needs. I needed my parents, my mother especially, when I was scared or sick. My dad embraced me the times I least expected, like the break up from my very first boyfriend. My mother took good care of me while my dad taught me some lessons about brushing myself off again after life would offer its hits over and over again. I’ve learned that happiness is not a given. It is a gift. Life is about the struggle so it might as also be about how we handle it. I need to show Adam that I am as strong as he will be. He needs me to be.

There are times when I think it so unfair to bring children into a harsh world. I wonder, as Adam will have to struggle through life the way we all do, why I did this to him. Yet nature was stronger than this logic. I wanted Adam as much as I needed air. I cannot imagine life without Adam and without having this level of love and responsibility in my life. Sure, I’m not unlike everyone else that I also imagine freedom. Yet, now that Adam is here, it’s not as important. This is what I made, and what came my way, and I want to make the very best of it.

When I woke up that morning and everything clicked together again, I remembered that we’ve gotten through a lot of phases. I remembered Adam’s smile, even though he wasn’t smiling that much in June. I remembered how much he loves and needs me and how I am fit for the calling. I may have to lie exhausted, strewn across my bed some days, but I know as long as I’m alive, I’ll get right back up again.

Since his new camp began in early July, the twitching abated as did the nibbles on his arm. I learned not to call attention to it, and to provide him with more soothing activities, while teaching him how to soothe himself. Adam uses a steamroller — purchased through Southpaw Enterprises — as a “squeeze machine” which provides him with the deep pressure he seeks. As several weeks have passed, he is more verbal again and the smile is back, even in his latest group camp photo. I try to rub his back and tell him that I understand when he’s frustrated, and he appreciates it.

Adam’s ways of communicating are so diverse. He has motor planning issues, apraxia and catatonia-like initiation issues. These are not motivational in the least. These are real impairments which need understanding and creativity in order to help Adam become enabled.

When people also think that Adam doesn’t understand, I want to show what he can do on his iPad or computer. He is able to demonstrate his ability to answer, usually one hundred per cent on comprehension exercises, with a multiple choice format. I asked his school to do that last year and he was able to answer questions better this way because it is a visual prompt — he has to choose from one out of three of four possibilities. Another way to see this is through his iPad. There are programs (you can start with “Playwords”) that ask children to pick the right word to match the picture or the verbal prompt — some of the words are getting sophisticated. Adam can zip through that exercise like it is nothing. Yet, give him another format, like fill in the missing letter of a word he knows very well, he has some difficulty. He needs me to model several times, the correct way to complete the exercise. Then he’s flying again.

After a couple of weeks of camp, a video of the end of the day “Flagpole” was sent to me by email. I always wonder why Adam points to his favorite activity being “Flagpole,” everyday. It is an end of day camp activity where the entire camp gathers together. In this video, counselors were demonstrating a dance and all the kids had to follow. It was boring at first to watch the counselors on a roof dancing to warbling electronic music. Then, the camera panned out. Suddenly, a small figure to the bottom right looked familiar from the back. I recognized the beige floppy hat and the lean body. It was my Adam following the dance moves and I could tell he was intently watching. It looked like he was having….fun. I was so happy, I forwarded it to all my friends and family. It was indeed the gift I have learned never to take for granted.

Today Adam sleeps in my bed and he needs me around to take care of him. I’m stuck in the house, but I know he needs me, and he loves me. He has just woken as I get up from the other side of the bed. “Stay here,” he says. Don’t worry, Adam. I’m not going anywhere.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Who, I wondered. I sat up straighter.

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

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

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

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

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

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

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

and,

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

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

Please sign this petition to help bring Ayn home.

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Today, June 1st, the winds are blowing strong. I’m not a fan of wind, of things being stirred up furiously into the air. Wind has always made me nervous and I want to be inside. I’m sitting out at the foot of my back door, drinking a Corona, about to abandon the otherwise gorgeous sun. Drinking a mid-afternoon beer is not something I typically do on a Wednesday as I wait for Adam to return home from school. I watch the gold, silent bubbles float up effortlessly. Hundreds of maple “helicopters” pirouette and land gently on my deck, leaving a soft brown carpet for my feet. If only life were as effortless and gentle. A gust comes and the carpet is swept away a new shape is made — they jam in between the deck boards and jut out like a bed of nails. A couple of hours ago, I got a call from Adam’s school. His class, just before summer begins, is being “dismantled,” I was informed. I am dizzy about September. Or is it the beer?

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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Matthew Israel, Founder of the Judge Rotenberg Educational Centre where autistic students were taught to comply with electrical shock “treatment,” has finally been charged. Here from Boston.com:

The founder of the controversial Judge Rotenberg Educational Center is scheduled to face criminal charges in Dedham today arising from a night in 2007 when two special needs teenagers at the center were wrongfully administered dozens of electrical shocks, according to the father of one of the victims and another person with knowledge about the case.

In a deal reached with the state attorney general’s office, Matthew Israel, 77, is expected to be spared prison time in return for stepping down from the Canton-based center that he founded 40 years ago and accepting a five-year probationary term, said Charles Dumas, the father of one of the two victims in the 2007 case who said he spoke yesterday with prosecutors. As part of the agreement, the school’s day-to-day activities will also be overseen by a court-approved monitor.

As a mother of an autistic son, I am sick that it has taken this long after many of us signed petitions to stop him. I read through reams of his statements suggesting why this form of Behavioural Conditioning was an “effective treatment” for autism.

The Judge Rotenberg Center treatment goals include a near-zero rejection/expulsion policy, active treatment with a behavioral approach directed exclusively towards normalization, frequent use of behavioral rewards and punishment, video monitoring of staff and the option to use aversives, the most controversial of which is the use of electric shocks. The final item has provoked considerable controversy and has led to calls from several disability rights groups to call for human protection from behavior modification, behavior therapy, and applied behavior analysis approaches.(From Wikipedia)

“Its most effective backers have been the parents of some of these troubled students who say Israel’s center accepted their child when no other school would. Israel has said his methods work and have virtually eliminated the use of psychotropic drugs at his center,” says the Boston Globe.

Is this the type of quality education we receive for autistic students when “no other school” will provide it? And don’t kid yourself that similar aversive tactics are not used here in Ontario. You will hear of the autistic person being “ignored” by therapists as a behavioural tactic in order to stop the person from crying. Instead of attempting to figure out what might be the root and cause of upset, a child or person will receive this cruel form of “teaching.” It is my experience that this makes a person either more aggressive or shuts them down completely.

[Israel's] tactics have been condemned as barbaric and savage by many top medical and mental health professionals. But despite some injuries and even deaths at the facility, the center has continued to get state approval to operate as a special-needs school serving some 200 students with serious emotional and behavioral problems, including autism and intellectual disabilities.

It has taken years for Israel to be charged and such tactics to be viewed as criminal. There have been many parents who have believed that this shock treatment has been helpful and have stuck up for the Centre, typically arguing that their children are aggressive or self-injure, and the arguments can sound compelling. This is one of the reasons why it took so long to charge Israel. This is the side of parent advocacy that is risky to autistic folk. There is a side to people we don’t want to see. There are difficult sides and as our history has shown, we’d rather lock it away in institutions, and treat it harshly and ignore it all together. I was never convinced that treating human beings with shock treatment against their will was ever a viable option. I don’t imagine I ever will be.

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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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As you read yesterday, I lost Adam for about 10 minutes. It seemed a lot longer. When I returned home for the day, I was feeling down. I thought, just when things seemed to be going so well…another challenge. Then, my ceiling leaked from the rain.

Ah well, I said to myself as I opened my eyes this morning. At least Adam had the sense to re-enter that church all by himself. At least there was no tragedy. At least my roof isn’t caving in. Someone is coming to look at it hopefully later today.

I think it’s good to let the down go through us — to hibernate after an event like this. But I also reached out. I contacted every team member, my friends. I was so surprised by the deluge of support. I realized, that even as I think I’m alone, a single mother, I am not. I learned this by not keeping yesterday’s event to myself. I realized that I cannot do everything by myself.

I am really grateful to my friends, family and Adam’s support team who are always there for us, and even you readers who take the time to lend your support by commenting here and on Facebook. For me, writing is a way to survive, to think, to overcome my challenges. I cannot let them fester. Other people manage other ways. I manage this way.

I spent many years learning how to build a strong team of support. I realize that network has been carefully woven and I’m in awe of the time it took. I hope to be able to write a piece how I was able to create this web of support, and the trials of putting it together.

When we are building teams for our children, we have to look at good fits. We have to feel good about who is working with our children. For myself, I could not hire people who treated Adam in a way I did not want him to be treated. It was simply an intuitive way of parenting him. Building a team later became supported by what I was reading and hearing about certain therapies and ways people with disabilities have been treated. I never realized it, but I have a distinctive parenting style. I appreciate sensitivity because it suits Adam’s needs. I love kindness. I adore when people realize he is a person full of potential, despite his challenges. As I built a team to support Adam, I realize I also built one to support me in my ability to parent him. I realize my limitations and my need for others to help, and how we work as a unit. I am his mother. I am suited to loving him well. Although I teach him as a parent would, I am not a great teacher. I reach Adam by being gentle, not impatient. His interest in music and art is nurtured by my interest and activity. I’m good at a few thing and not good in others. When I think Adam needs to learn something I cannot teach, I am happy to hand him over to those who can give him those other gifts.

I ended the evening yesterday talking to one of my best girlfriends. She has a typical daughter. She talked about how she lost her daughter at the cottage. So many parents have reached out and told me their tales of losing their children — typical and autistic. When I rethink everything, I realize that exploring is a rite of passage. Adam wants to be independent — the very trait we want our autistic children to learn. He wants to explore, hide, and thinks excitable voices are really funny. I wonder if we target the autistic child for wandering, like so many other challenges, and forget about how the typical child does the same things as our autistic children do. The age ranges may be different, but sooner or later, it happens. Sure, I’m nervous about this and will be on top of it as will his team. Yet there is a side of me that thinks — tragedy averted, of course — that he made his way back into the church. He wants to explore and do his own thing. He tried to make his own popcorn the other day and wrecked my microwave. I mean, how many parents have the same story of their homes being near destroyed by a clever, well-meaning child?

It’s time to support Adam again and make a new plan. We have to avoid danger and we have to support his need to explore and be independent now. I just have to learn to keep up.

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