“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’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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The road called “evaluation” is filled with opinion and advice. Everyone has a thought about what’s best. I am taking each word in and processing it slowly. Although September is only two months away, I know this cannot be rushed. This requires a lot of questioning about what’s best for Adam, for his autistic learning style, his levels of anxiety as well as his other interests and needs. I have been making long lists of my assumptions versus the reality of how Adam will best grow, and grow happily.

School is a tricky thing. We tend to view it as the ultimate socializer for our children and a place where they should get everything they need. For any child, I tend to want to question our way of thinking about school (and sure, of course, making this a whole lot harder on myself, as usual).

The United Commission on Human Rights Statement on the Right to Education, written in 1999, reads:

The core human rights standards for education include respect of freedom. The respect of parents’ freedom to educate their children according to their vision of what education should be has been part of international human rights standards since their very emergence.

In her book Home Educating For Autistic Children: Paths Are Made By Walking, Terri Dowty and Kitt Cowlishaw write:

We all know just how difficult it can be to reclaim the responsibility for our children’s education — or to decide not to relinquish to a school in the first place. Parenthood is riddled with guilt, under-confidence, and a sneaking fear that our children might be better off in more qualified hands…

A child is to school as bread is to butter. Perhaps that was true to some extent in the days when knowledge was a restricted commodity; however, we now inhabit a world where access to information on any subject imaginable is only a library ticket or a mouse click away. As society changes, the sacred cow of education has come to resemble a rather less exotic domestic beast, prompting thousands of parents to take the leap of faith into providing it themselves, in co-operation with their children.

I have to decide soon what is best for Adam’s day, which could be a combination of things. I will be dedicating my summer (and I’m sure other falls and winters) to this. I can relate to the pressure of outside opinion, or the preconceived notions that being in school is better without really thinking about it deeply. Probably, like all things, a little bit of everything is true.

The one area I wonder about, is that autistics do better when they are socialized in a school setting. Certainly, for most autistics, this becomes the only place where they get any socialization, but school programs aren’t always set up just to work on social skills or even just to be social in an autistic way. Again, what kinds of programs are best suited for the autstic person? Where do we all get our social fix? Does this all have to happen in school?

Autistic people are not always wanting to be social in a typical way and it’s not always fair to assume that they must have our same skill set. Yet, it might also not be fair to equip an autistic person with the skills they may require in order to feel like they can at least manage friendships with neurotypical people. This is so tricky and we need to acknowledge that it is and be careful with autistics so that we do not bombard with just neurotypical ways.

Regarding school as the primary source of everything, Dowty and Cowlishaw continue:

We are now so ready to accept that school is the means by which children become socially competent that it is tempting to wonder how society managed to advance beyond grunting until the advent of compulsory mass schooling.

I’m one of those parents, like thousands of you before me, who are pushing through the bush of assumption about what school is and what is best for Adam. There is confusion for everyone out there and even more so for autistic people who have even fewer options.

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I don’t have the stomach for it. That’s what I’ve learned as Adam’s parent. I look at some parents and see what levels of creativity they have in awe. I can’t muster the energy to build castles, a volcanic model… yet. Okay, I’m not that bad. I do lots of things with Adam. Mainly, I enjoy just being with him — going for walks, to the park, drives, to restaurants, and playing games here at home. I enjoy learning to play music again and Adam often plays the piano next to me — I like that and it comes naturally. In the summer, we enjoy swimming. I just don’t have the stomach for the endless trial and error to get Adam to become “normal.” In the quest for a cure, I have seen that Adam loses his essence. So it’s official: I can love him and have my limitations too.

In my journey, I’ve learned that other people have to be his teachers now. It is good for Adam to learn from others. I see him becoming more independent and communicative at home. I am really good at loving him, and well, being his parent. I get top marks for that, I think. So I’m thrilled that one teacher can make such a big difference — that Adam can pay attention without medication. It should make us all think, as parents, what we can do to help proliferate this need for great teachers and schools — to create lucrative enough opportunities for teachers to want to stay in the profession, and with our kids.

Sure, I don’t know what the future has in store. My ideas of it are always shifting. I’m just trying to have faith that everything will work out the way it is supposed to.

–

On another note, I’ve been wanting to write that Adam had his ninth birthday party on Sunday. Most of the kids from Adam’s school have never attended a birthday party before. Like them, Adam rarely gets invited to parties. It is but one unfortunate fact of the autistic life that people need to know and understand. I try to create opportunities for socialization and had typical kids in with the group. I hired a company that brings snakes and an alligator in order for the kids to be engaged and kept a lot of structure, which was successful. The “special needs” kids were so grateful and polite. I heard a lot of thank you’s that day.

Later in the week, my mother sat in my kitchen. “That was the loveliest kids birthday party I’ve ever been to,” she said. “The kids were so nice.” Her face changed to a look of awe. “Usually you go to birthday parties with typical kids and they are all spoiled and complaining. These kids were so mature.” I felt eubuillant when she said that because I felt it too. If only everyone knew. If only everyone knew that the kids with challenges are not “behavioural” because they are spoiled, but because something in the moment is truly frustrating and difficult. If only they could have seen what my mother recognized.

Maybe we’d be invited to more parties.

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These days I’m still attracted to typeface and letters, am a big fan of Cy Twombly and the artist, Agata Ostrowska (a printmaker whose work I’ve posted at the beginning here), and others who incorporate text into their work. It’s an “obsessive interest,” I guess you could say. I love the way one word can have one meaning when it stands alone, but when placed beside another, can connote something different.

Long after my “obsession” was contently embedded, I gave birth to an autistic child who also loves letters and read them by 11 months of age. I revelled in his ability while many others told me to be on alert — that Adam, with “hyperlexia,” meant that he would be able to decode words and letters, but his reading skills would still suffer later on — when he had to read phonetically and comprehend.

Yet, the other day, while sitting on his bedroom floor in the twilight,  I pulled out some pictures and words that I thought were completely unfamiliar. It seemed no-brainer to him. He just knew what all these pictures were. He picked up the information somewhere and organized it. I think kids like Adam are like sponges, picking everything up and making sense of it in their own way, despite the fact that we don’t always think so.

Language and comprehension is like art. We don’t necessarily acquire it the way Penelope Leach and Dr. Spock insist young children do, and we cannot be certain of how it is experienced and acquired, except that it does seem to be experienced on many sensory levels. We can make assumptions by how a person communicates, through different forms of expression. Like art, language acquisition, although widely studied, is largely ineffable; so vast that we will never know enough.

Lists, and obsessive interests like purported autistic collectors and artists like Joseph Cornell and Gregory Blackstock added fuel to my existing interest in not just letters, but the lists they can become. These are the way we organize information and make sense of them — the child who lines up the trains, the objects, perhaps,the artist who draws cities in perfect detail from memory, or the child who builds their knowledge like intricate networks of scaffolded knowledge. These are the ways we make sense and order of things.

Umberto Eco, art historian and novelist, by virtue of his profession, is interested in form, structure and order. As a curator of art, I too understand the art of catalogue. I enjoyed working in a library for part of my university career for this very reason. I loved the smell and feel of card catalogues in and of themselves. I understand the way curators and librarians collect things and how important it is — these libraries of human thought. In his book, The Infinity of Lists, Eco made me think about how I think Adam acquires language — like the curator — filing and cataloguing and even enjoying every sensory aspect like the musty smell of the card catalogue. How we take for granted the sheer art form of it.

 

To finish this post, I’ll leave the idea hanging for now. Just enjoy this. It’s something Adam found, actually:

But since we have digressed abundantly,
Turn back thine eyes forthwith to the right path,
So that the way be shortened with time.

This nature doth so multiply itself
In numbers, that there never yet was speech
Nor mortal fancy that can go so far.

And if thou notest that which is revealed
By Daniel, thou wilt see that in his thousands
Number determinate is kept concealed.

This primal light, that all irradiates it,
By modes as many is received therein,
As are the splendours wherewith it is mated.

Hence, inasmuch as on the act of the conceptive
The affection followeth, of love the sweetness
Therein diversely fervid is or tepid.

The height behold now and the amplitude
Or the eternal power, since it hath made
Itself so many mirrors, where ’tis broken

One in itself remaining as before.

– Excerpt from Dante’s The Divine Comedy, from Paradise, Canto XXIX, VV, 126-45.

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Adam brought home a large scale drawing he made with his teacher — about 3×3 feet. He loves animals and started drawing them. Then he starting adding features. He shared the coloured pens, asking his teacher to draw things, using all his own languge, and adding different characteristics.

In this massive drawing, for instance, is an icecream butterfly, a snake dragon with zebra stripes (again, I’m using the language he uses as he is talking more all the time now), a dragon horse, a zebra pig, a strawberry cat, a cookie elephant and lots lots more.

I am loving this — marveling at the picture and how Adam made his imaginary world come to life and how, perhaps, he might be experimenting with ideas. Now, I’m thinking of Adam as my little Hieronimus Bosch…junior.

Ah, that wonderful autie mind!

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Ralph James Savarese, Professor of English at Grinnell College and author of Reasonable People: A Memoir of Autism and Adoption, writes The Silver Trumpet of Freedom in The Huffington Post. It’s about his autistic son D.J. and how he communicates by typing. D.J., featured several years ago on CNN, is a non verbal autistic individual, and an autistic self advocate. D.J. is now in College and of this Ralph writes:

Pitting his fear of an oppressive neurotypical culture, which as a rule continues to exclude people with autism and to prevent them from realizing their potential, against his belief in the power of words to combat prejudice and to change society, he decided to apply to a range of highly selective liberal arts colleges. Although he had made a place for himself in our small, rural community, he had his doubts about the wider world.

The fact remains: very few people whom the medical community would describe as “severely autistic” matriculate to college. By some estimates, only 20 nonspeaking people with autism have ever earned a college degree. Tito Mukhopadhyay, author of three books and perhaps the world’s most renowned nonspeaking autist, puts it this way: “My school is the doubt in your eyes.”

We know of non verbal “severely” autistic people who have been or are currently attending colleges and universities. If they haven’t done that, they’ve written insightful books on autism, are important researchers in the field of autism, and lend perspective about themselves and the human condition. Their contributions are evolving our view of how autistic people and those with other disabilities are viewed. The goal? An understanding of what it means to be accommodated in order to be able to contribute and to be accepted.

Although I click my heels (there’s no place like home) with glee everytime I read one of these articles that raise the bar higher, I have to recall the recent story in my hometown of Toronto where Ashif Jaffer, a student with Down syndrome, was forced to withdraw from York University because he required assistance. It’s an interesting story and one to keep an eye on because many autistic individuals require assistance and accommodation to attend colleges and universities. Also, many are asked to leave precisely for this reason. There is little understanding of why an autistic individual is often dependent, in various degrees, and perhaps too much value placed on the myth of independence — at least the value of it. With new technologies, I see autistic individuals better able to respond and contribute to our university programs, but our institutions of higher education are not quite prepared, and still lack understanding of what assistance means for the disabled to be able to participate as they are in our society.

Huh. As I write, this thought lept into my mind: the typewriter was originally invented for the blind. As a result of this accommodation, I too have benefited.

Onward ho!

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When Adam turned thirteen months of age, he didn’t walk, he just started running. Now, Adam has to sit at a desk and concentrate. Yes, like so many other families with hyperactive kids, we decided to give this a try. Yes, like so many other families, particularly ones with autistic family members in them, I’m not entirely happy to put Adam on anything and wish he could have more sensory breaks in his day as part of his accommodation. And yes, I’m taking my personal bias out of this because I’m trying to find the best options for Adam. I mean, what if Ritalin, or something like this helps him learn because he can focus more, right? At least that’s the logic that I’ve been hearing, and it sounds reasonable.

It was an extremely interesting trial, and it’s not over. We have debated for years what consitutes a “high or low functioning” autistic person. So often, kids with lots of “behaviours” and non verbal learning disabilities are deemed “mentally retarded.” For proof, take a look at this chart I found today which describes someone who is classically autistic and non verbal as likely retarded or severely delayed:

Many people have delays. I don’t think that that’s the real issue.

Adam is distractable. He is given very junior work at school because he has trouble responding in typical ways. Until he does, he is held back. It seems reasonable on the one hand — generally teachers do not want to go to fast or assume a child understands or comprehends if they cannot respond fluidly. I’m not blaming the teachers. I can see the logic in teaching a child how to respond and trying to figure out what the child actually comprehends. On the other hand, what if a child does and s/he cannot type fast yet, or is so distractable that it’s difficult to know what they comprehend? Ah, the rub of teaching the intelligent non verbal autistic person. (Yes, the ones we have also called mentally retarded and low functioning…but I must be fair… there are more people who get that Adam is a very bright little boy too).

The Ritalin was proof for me about what Adam understands — you can’t learn what he knows in the two days he was on it. It confirmed what I knew all along. He could listen to many instructions, complete tasks, do things I’ve never seen him do before so quickly. And yet. His legs couldn’t stop moving. He seemed agitated. His smile disappeared. He did not want anyone to touch him.

I’ve always thought that Adam was classically autistic. I’ve always known that he understands me, can comprehend so much, and knows how to do so many things. He naturally learns in his enivornment and yet, his disability makes it so difficult for him to focus and respond. Still, he can respond and learn and it appears (to us) like a slower process. He needs to complete tasks and work ten to fifteen minutes at a time. For the work he is really into, he can concentrate for long periods of time (hmmm…usually those are called obsessive interests or preserverations. His would be animals, planets…)

What price do autistic people have to pay? I think so much…more than we would expect of typical children, although we medicate them too. I’m sorry to say that one drug has had to confirm that my autistic son is intelligent and has so much ability. He has a disability that we are still learning to work with, educate and accommodate, yet our kids are part of a generation of trial and error. Sure, we might be a little farther ahead than the previous generation of autistics but I’m not so sure, either.

I do not want to make Adam into a zombie-robot. That’s what I saw (granted it was only a two-day trial and I’ll have more to say as we garner more experience). I’m interested to learn and discover of how to accommodate Adam without taking away his innate joy, smile, and HIS desire to connect with other people. I’m also not certain what part of the autistic learning process it may also be suppressing. Since we don’t value the way autistic people learn naturally, I have to question this too.

I think we should all be asking a helluva a lot more questions. I’m trying to find the right questions to ask.

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A study recently released in Delaware found that disabled students are more likely to be suspended for ‘behaviour problems.’ More specifically, while 20% of the students suspended1 were disabled, disabled students only make up 14% of the student body. The study questions this disparity, asking why it is that disabled students are at more risk of suspension although there is an established body of law that is designed to specifically provide protections for disabled students, and to limit the circumstances in which they can be suspended.

The article asks, not ‘why are students with disabilities more likely to be suspended,’ but ‘what makes disabled students behave badly?’ I personally think that’s the wrong question. What is ‘bad behaviour’? How is this being defined, and who is defining it? It’s good to see some mandatory accountability in the form of tracking discipline numbers and reporting them, but accountability is only one part of the equation. If districts are not taking action to address the disparities, reporting them doesn’t make that much of a difference.

And are schools adequately identifying disabled students? While there has been more of a push in recent years to identify and intervene when disabilities are observed in the classroom, there tend to be racial and class inequalities when it comes to diagnosis and treatment. Likewise, there are disparities in identification; a teacher may attribute differences in learning and communication styles to disability in a white child, and ‘bad attitude’ in a nonwhite child, for example.

The approach to this particular educational disparity seems to be focused on what ‘makes’ students ‘behave badly’ instead of asking whether teachers are being adequately trained to work with disabled students and asking what ‘bad behaviour’ is and who is defining it. It assumes that everyone should (and can) engage in specific patterns of behaviour and it suggests that ‘abnormal’ behaviour patterns should be punished.

Are students suspended for not using modes of communication familiar to teachers? For needing to stand or pace while learning? For needing a quiet environment for learning, and for becoming upset when one is not provided? For needing orderly and precise schedules? For not completing assignments they don’t understand or find impossible to finish? For attempting to create and maintain personal space? For expressing any number of needs and needing a space where they are accommodated? For tics in the classroom?

When nondisabled people are the ones defining ‘normal’ behaviour and deciding what is bad and worthy of suspension, inevitably you are going to end up with disparities in student discipline. When teachers are not provided with adequate training, when they are dealing with classrooms that have too many students in them, when they are being burdened with a lot of additional work outside the classroom, a tinderbox of circumstances is created and disabled students tend to lose.

Suspension is a serious punishment. Students missing a month or more of school is a serious problem. Until we reframe the way that we talk about classroom behaviour, we’re going to continue missing the heart of the problem.

— article by s.e. Smith

I quote this because I’ve been writing about behaviour recently, citing the issues with have with how we teach autistic people because their “behaviour” is, purportedly, the “issue” of learning, or at the heart of, we are told, “learning how to learn.”

Instead, I’ve coined recently the term “creative behaviour,” and am watching Adam learn and gravitate on his own. How do we continue to foster the creative process? How can we move away from thinking about autism as a set of behaviours, implicitly “bad.” How, is the ultimate question, do we help children like Adam, express themselves?

Let’s think about this for a bit — what we know about creativity and the work we can produce. Let’s step out of the autism box and all of the implications we press upon autistic people (for the label alone) and think about what it is we are really trying to achieve.

Creative thought is the ability to think about the world in unique and fresh ways and convey this to the world. By bringing our unique thoughts to others, we help to shape the way we do things, and the way we think about other people. Creative thought also helps solve problems. We hire people to do a lot of problem solving for us, yes?

I now turn to Twyla Tharp, author of The Creative Habit: Learn It And Use It For Life.

There’s paradox in the notion that creativity should be a habit. We think of creativity as a way of keeping everything fresh and new, while habit implies routine and repetition. That paradox intrigues me because it occupies the place where creativity and skill rub up against each other.

It takes skill to bring something you’ve imagined into the world: to use words to create believable lives, to select the colors and textures of paint to represent a haystack at sunset, to combine ingredients to make a flavourful dish. No one is born with that skill. It is developed through exercise, through repetition, through a blend of learning and reflectin that’s both painstaking and rewarding. And it takes time. Even Mozart, with all his innate gifts, his passion for music, and his father’s devoted tutelage, needed to get twenty-four youthful symphonies under his belt before he composed something enduring with number twenty-five. If art is the bridge between what you see in your mind and what the world sees, then skill is how you build that bridge.” (p. 9)

Yes, skill is really important. A way in which to convey meaning to others is vitally important. The rituals and habits we establish are the practice we need in order to produce something. Creativity sparks when we stare into space, have that second snack from the fridge, putter, and when we appear to be doing nothing at all.

Adam takes piano lessons once a week. We’ve adapted the lessons, and his fingering is getting pretty good. I started teaching Adam to learn piano in a more traditional way a couple of years ago, even though we’ve learned to accommodate the lessons. He learns from a teacher who expects him to practice everyday and who can be stern about him sitting at the piano. In this case, Adam needs a bribe. I’ll ask the teacher to make him work for the candy, and he’ll oblige and finish practicing. Okay, it’s hard to learn piano in the traditional way. Yet, like Twyla says, creativity is a habit. It requires tons of preparation. So we stick with the program.

I’m teaching myself how to play the guitar. I struggle with the chords, my fingers just beginning to become numb at the tips; hurray, I’m building my first callous on my left index finger — a good sign. I pick it up every morning while Adam waits for his ride to school. He comes over and strums a good rhythm. He smiles and then gets really into it and forgets I’m there. A couple of days later, as I’m making a second cup of coffee, Adam goes to get the guitar leaning against my bookcase. He takes it to the couch and begins strumming on his own. He’s focused. This time, he doesn’t want me to help him.

Two great examples, I think, between the art of repetition and practice, and the space to explore. Rather than seeing Adam as behavioural, because he may avoid that which is difficult in formal practice (I was the same, by the way, when I was a kid), I explore the value of both methods of teaching and learning.

Art and music have been part of my entire life. I’ve taken music lessons with the strictest of teachers. When I thought I could fart away in art class, Sister Collette (don’t you just love that name that belonged to a Franciscan nun?), scolded me every week if I submitted a project late, and then loaded me with more work and deadlines because of it. While I was artistic, I didn’t think an art teacher would be so strict. “Art,” she said, “will teach you the greatest discipline more than anything else in your life.” I probably worked the hardest when I was in her class, where I stayed for my entire five years of high school. Art was an elective course, an option. Art wasn’t a “prerequisite” like math and science. We think of art in trite ways — all we have to do is be gifted, talented, and the muse will bless us.

Na uh. Art, like life and very much like in teaching autistic children, is the ultimate example. There is something intrinsic in all of us that we can express, and need to express. We find the tools to help us express it, and usually the ones that we most gravitate towards, but that doesn’t mean learning how to use them is easy! We work daily becasue the manifestation of our inspired thought is more difficult to express to others.

What I’m trying to say is that teaching autism is an art and has to be viewed in similar ways. We find the tools (aka “accommodation”) and we teach the child how to use them everyday. We repeat, but we do not de-value the unique process of taking in the world (aka: like when they are appearing to “not be in the room” or “in their own world”). And as the living art forms that all humans are, we must also as teachers and parents, forget looking at autistic kids as a Diagnostic Manual of symptoms and behaviours. For the human body and mind, in it’s infinite wisdom, finds the tools with which to also express iteslf. Let’s learn how to use them.

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Despite my occassional worries (I’m a human being, a parent, that should say enough), I’m steady where Adam is concerned. When worry overwhelms me, I start reading more, reaching out and then I realize that I’m on the best track we can be on. The issue with parenting autistic kids is that there are too many opinions about how to teach and how to parent — hey isn’t that the case for parenting all kids? So many opinions.

What kind of parent am I? I ask myself. What am I capable of doing? After listening to how other people do things (or how they think they have to do things, particularly in the field of autism education), this can make a parent’s stomach churn with anxiety, and I think it’s okay to say enough. After doing the due diligence work, there comes a point in all of our lives, whether we are parents or not, to follow what we think is right for us. Reading any latest edition of The Autism News or any other study will make your head spin. I’ve made the PECS, the visual schedules, I’m teaching Adam how to type independently (it’s coming along well), he goes to a good school where I see he is learning new things, I seek input, advice, and lots lots more. It’s what a parent does. I’m not a teacher, yet I’ve learned to work with them. I’m not a therapist, but I’ve learned to communicate opening and share ideas. When I heard Rita Jordan once say on CBC Radio One that parents have to follow their own values in parenting an autistic child, I knew exactly what she meant. How many of us are listening to those voices inside?

Adam needs me to be his parent. With open arms and the love, he snuggles up to me for comfort, and I happen to be really good at this thing called love. He doesn’t need to know what I do for him behind the scenes. When he comes home, he just wants me to love him…as he is.

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Adam has had quite the transitional year. He has gone through parental separation, moved to a new home with me and started a new school where the expectation is that he sits at a desk. His sleep has worsened, and his avoidant behaviour in doing certain “tasks” has begun. And yet, my Adam is talking in full sentences more often, is telling me how he feels, and can play a mean “reciprocal” game of I Spy with me. He can draw well (if given the chance) with perspective that is more sophisticated than his same aged-peers, even if his motor planning, that is line, is not as sure and resolute.

I have to say that when someone talks to me about Adam’s “behaviour” I do think in the old-fashioned sense that he is not behaving “well,” as opposed to looking at what’s causing the behaviour. It still pops up from time to time, and I am concerned that implicating behaviour is a way to not only blame Adam, but put an expectation and onus on him that is not fair. That is but one legacy that ABA left behind, although I’m not commenting on some of the methods used by the practice as part of an overall pedagogy. I bribe him a lot to get things done.

Adam needs physicality, lots of movement, interesting content, and a chance to respond more by typing. He needs more preparation, I believe, to start his day, and a different kind of structure in it. What I mean is, by 2 p.m., the boy is tired. I am still trying to figure out what that structure should look like as I orchestrate new programs and activity in his life. Because, Adam is no longer a baby. He will be turning nine this April.

It seems to me that we are learning about how autistic children learn, or at least I’m learning everyday. My process of learning about Adam and trying to work with his team of teachers and supporters never ends. Sometimes, I sit and stare at the wall, I admit, and wonder why we still haven’t figured this out. Maybe I was secretly hoping we would have by now.

I’ve hit the books again. I’m watching Adam closely as he has trouble falling asleep at night. I watch my own responses to him when I feel tired and frustrated. And one thing that surprises me is that I still am not giving up. I don’t want to blame Adam for being autistic. I want so badly to support him and to have support. I am still trying to articulate what accommodation really means for him. I am constantly evolving my attitude, and behaviour, towards him.

Soon Adam will have an aide who will take him into the community, to help him be a part of it, make friends, take theatre classes and go skiing (he starts next week!). I hope to get him into Special Olympics and keep working with those who have helped us along the way. It is clear we don’t have all the answers yet. But if you have some success stories to share, we’d sure appreciate them.

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Adam will be at home. He’ll work on his computer, I on mine. We’ll play piano and a few games. I still haven’t had time to complete his art studio. My work will have to go on hold.

Life’s changing here. Being a single mother has new challenges. I look for time to get things done, as it’s just Adam and I and there’s no one to help me in the early mornings if he’s up too early, or sick. That’s a big difference I’m sure many a single-parent will relate to. Time has become more limited when one has to rebuild, and even learn, from scratch.

So, I don’t like problems thrown at me all the time. I’m impatient. I expect those who say they are experts to help us, not throw the problems back in my lap. When it comes to Adam and talking with those who help him out, I’m not certain they realize that’s what I hear. Sure, we’ve got challenges. But it becomes overwhelming when things are constantly presented as a “problem.” Hearing this for seven years now since Adam’s diagnosis, and maybe this will make sense.

If you are a therapist or a teacher or aide, consider this: that’s all we hear from the time our children are very young. From a parent’s perspective, it’s not only very scary in the beginning, but later, it’s just plain exhausting. In the beginning we scurry like there’s no tomorrow becasue we are trying to find the best program or school placement, and that’s not easy. Perhaps if you are going to present a challenge, offer a solution. I’m fortunate in that I do have people with whom I can strategize. Yet, there are few options out there for autistic people, and even therapists are hard-pressed to be able to find places for us to go. Schools are scarce. Inclusive schools are scarcer.

There are few adaptive services. I spend hours each week not only filling out forms and getting on wait-lists, but also phoning to find suitable sports and other programs for Adam. This begs the question: why are there so few of them? Why can’t Adam learn how to play baseball? I remember how easy it was for my step-kids and all the programs they had to choose from. I’m trying to reach Special Olympics, Boyscouts, ski programs…it takes a while to hear back. For Adam, his options seem so much smaller than they were for his half-siblings. It’s not equal and it’s not fair.

Why should he have to go to an autism school if the autism school doesn’t fully integrate a vareity of tools to support Adam’s strengths? Perhaps I’d go to the autism school if I felt it treated him like the magnificent person he is, addressing the challenges he has, and training him as an autistic person to prepare for college, university, or some other vibrant future. Believe me, if I could find an autism school that was as robust as those belonging to the deaf community, I’d consider it. At least there, using the deaf community as a model, autistic people would be allowed to act autistic, and build their own strong community. Instead, I see schools addressing “autistic defecits” in an ABA format, which I don’t believe works that well for Adam, as it escalates his anxiety. (Side note: and can we hire autistic adult teachers, pleeeze). Repeating skills in that format is good (belonging to ABA and other methods), sometimes positive reinforcement is good, but it’s not very creative because it teaches not so much content as much as it is a way to teach someone how to answer and respond. It’s not necessarily a “bad” thing, it’s just not the only way to teach, and I fear it lacks the engaging content my son needs. It doesn’t foster creative behaviour.

You see, I think discipline is really important. It’s an art to teach a very young, challenged child to be focussed without also inspiring him and building his confidence. With Adam, this is especially difficult. Despite his communication challenges, he has pride, will avoid tasks that he thinks he likely will fail, and is very aware of his inability to communicate like other people. Force him to “put the puzzle” piece in for the 1000th time, and I don’t think that’ll do it. Offer him a candy to do a task, and he knows that if he avoids the task, he’ll get a candy. It works sometimes, but he’s outsmarts us. Still, breaking down tasks into smaller pieces, and repetition is a key to fluency and competence. Marry that with exploration activity and keeping the topics and materials moving along (he’s not a baby anymore), and that’ll keep his interest. I wonder if we just expect too little from him. An inspiring person/teacher, and tapping into Adam’s innate need to be proud of himself, and I wonder…

I don’t think that typical families understand the extent to which we have to hunt for places for our kids to belong, and I believe Adam has the right to be fully integrated and included into our community. I feel I am met with resistance, and I knew this would take a long time. I hope it doesn’ drag on well into Adam’s adulthood. This is a systemic problem. We simply don’t know how to teach autistic people, despite ABA being the purported solution. All we know is how to use a few PECS, schedules, and accommodate sensory differences. Sure, this is a big change from even a few years ago, but I’m becoming impatient. I have not seen any creative programming for autistic people. Is it because we don’t believe enough in autistic people to invest in fully inclusive programs that train facilitators in a vareity of methods that must then be uniquely applied to each individual? Instead, it might be easier to say that an autistic person has this defecit and apply a one-size-fits all solution. As I used to work in public art galleries, and also used to teach young children art through music, I’m thinking a lot lately of helping schools use an art program to teach other topics such as math and science. And if you want to see another extremely creative parent, check out Kyra and Fluffy at thismom.com. Kyra completely blows me away with her boundless energy and ideas. I’m not as creative as she is. I just hope people take a look at some the projects she works on with Fluffy (she homeshools him). I hope, using them as one positive example, that we never give up on autistic folk.

I meet wonderful teachers. I wonder why I don’t see the programs to place them because autism seems of great interest to many. When I consider Adam, I think of just last night as we practiced piano and how he became enamoured with the low G. As he continued to play it, I improvised. He smiled and we made music for over 30 minutes, coordinating together. I think of how he can get so focussed in art-making and all the things we can learn from making it. Art can be therapeutic, sure, but what of all those lost learning opportunities because our teachers are not trained in using these tools so easily accessible for Adam? If Adam is any example, he does well when we find a patient person who listens, who wants to learn how he learns, and who can accompany him in the community that he’s so interested in. I have a boy yearning to try new things. Thank goodness for his camps. There is has learned to climb walls, archery, and many other wonderful skills. He seems happiest at camp, learning from physical activity to quiet art and loves drama and creative movement — hmm.. we hear autistic people can’t do the latter, right? Not so for my guy.

I just thought I’d write this because we have huge scarcity in Ontario and I keep looking to autism websites here and don’t find much. Social skills groups are always full and I wonder what they teach anyway? How to say hello? Play with the plastic doll? Okay, that’s a skeptical comment, but what creative programming exists within the skills that autistic children need to also learn? We can inspire our children. People think we need autism schools, but that’s not necessarily the solution. It seems easy because at least that’s a place to put autistic kids. I like it that Adam sees everyone and that he be seen, and where he can feel competent as he is (this is a problem if we stick our kids in typical schools where they then remain on the sidelines). I still see people wanting to change him and fill in his “gaps.” Certainly, they exist; Adam has challenges. Yes, I hear about them all the time. I see them everyday. I am supposed to be teaching him at home more too — the onus is always on us. How much more time do we have?

Okay, just so this post doesn’t come off as a rant (I hope), here’s a link to Hopeful Parent. Maybe it’s the snowstorm coming, the large piles of paper I have to get through, and a team meeting coming up tonight.

I am hopeful. Maybe I can help out through teaching again. Just one of my many thoughts as I figure out the future these days.

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So many speicies receive respect from us in the sense that while we do not fully understand their behaviour, we know there is purpose and meaning behind it.

As I continue to work with others regarding Adam, I proceed with caution. The goal in getting Adam to focus, still seems to hang on getting him to stop these behaviours. We believe that once he stops, say, hand-flapping, he can “stay on task.” It’s certainly a challenge if we expect Adam to do something in particular that other typical kids do.

I am not dismissive of this or maybe even some need for it. Except, as his parent who watches him day in and day out, who can see his anxiety on some days after certain events which then can increase this “over-arousal,” I am trying to encourage Adam’s team to engage in his activities. I find that when I hum like him, vocalize and turn it into song, Adam looks at me with a rapturous smile. Working with Adam, as with anyone, involves a total respect of him and his needs and behaviours as well as a compromise from both of us. As adults, it’s up to us to learn how to teach Adam, and kids like him, to be creative thinkers. I don’t believe that we teach autistic kids to do this. We teach them to repeat back to us what we want them to. While we may want them to be creative and critical thinkers in the long run, I have to ask as I hope all of you do too, how are we nurturing this?

I want to learn how to teach Adam to think and act creatively, as I recognize that most of his day is spent with people telling him what to do… and to “quiet” his precious hummingbird hands.

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There is one thing I’d like to point out to Ms. Grandin, if I may. It’s the assumption about the autism spectrum or “continuum” as she puts it. It is tricky because it has been an easy way to describe and try to understand autism. Yet like most things easy, they are not fully descriptive.

It is the point at which she, perhaps inadvertently in order to simplify the description, lowers the intelligence level of non verbal autistic people to the bottom of the “spectrum,” to the “verbal” autistics who are “brilliant.” For all the non verbal or partially verbal autistic people out there, many of who comment here and/or write their own blogs and even do their own presentations, I’d like to add that non verbal people can also be of “normal,” “bright,” or of “gifted” intelligence. Of course verbal and non verbal people can also be more cognitively challenged. There is no way we can use the “continuum,” really, to effectively describe autism and intelligence and I think we need to talk about this more.

Temple Grandin talks a lot about thinking in pictures and she can verbalize this well. For many autistic folks who cannot, like my son Adam among others, I can say that verbal ability does not equal intelligence. I hope that Temple Grandin can speak a little bit more on that in the future so as not to cast another stereotype that she perhaps does not intentionally mean to cast.

In this blog, I speak a lot about the visual — visual data and the potential for many autistic people to translate so much data into the visual so that we can better understand it. There could be many opportunities for our children if we look at this seriously and nuture the skills. As for her segment on visual perception, I once posted a drawing by Adam, who has motor planning issues, but clearly had an advanced perspective, demonstrated in some of his artwork, over his same-aged peers. I have always noted and recognized Adam’s visual abilities. It’s still incredibly difficult to find teachers who recognize and are able to nuture this ability. It’s incredibly frustrating, in fact.

I do thank Temple Grandin for being out there to discuss the need for mentors and the contributions our children can make to society, if given the chance and opportunities.

In keeping with this post, Tyler Cowen, author of Create Your Own Ecomony also writes another piece on autism, ability and autism diversity.

Watch her now on TED:

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One of the most talked about issues in autism is the issue of verbal communication or “functional” speech. That is, speech that is reciprocal, social, conversational. For Adam, there have been major challenges in this area and he has had to use augmentative forms in order to communicate many things, yet for the person who understands his communication, he is communicating all the time. I do not find it too difficult to understand and the one shortcoming I may have is the tendency to feel frustrated when he is — when he cannot get a more complex message across.

Adam turned eight this year and much of this is beginning to change. Adam began to talk in sentences, began to show me things and started to become “the teacher,” in the sense that he would test me on the things he wanted to talk about in books. He learned certain concepts such as what something was NOT as opposed to what it was, among other concepts.

There are a couple of things I want to write with respect to progress in communication ability, quite unscientifically, in this post, for I have not yet found some good citations to support my theories about autism and development. So take it for what it’s worth and perhaps you may see some more of my posts deal with this — with citations.

I’ve been reading how to teach philosophy to children through children’s books: Big Ideas for Little Kids: Teaching Philosophy Through Children’s Literature, by Thomas E. Wartenberg. When we refer to teaching “critical thinking” to autistic children, it usually has to deal with teaching the more functional types like putting puzzles together or teaching Feature, Function and Class — for those familiar you know what I mean. These are the basic skills we believe are absent in autistic children because their very expression is difficult to manifest — be it for attentional reasons or motor planning issues, or both.

We do not address for the “profoundly autistic,” “severely autistic” or any autistic child, for that matter, often enough, how to read books, how to question and how to think abstractly because we have decided that autistic people learn literally. While this may be in part true, we miss an opportunity to help along the critical aspects to being human — the ability to question. I’ve read many a time how we wish to teach some flexibility in thinking in autism. To me, teaching through books and by taking a lead in creative ways to view things from different angles is not only an exercise for Adam, but also for myself. We would all stand to gain from working to think in ways that may not be familiar to us.

We are more often concerned with our children knowing how to read the words (certainly this is the first step to reading at all). We do not learn how to talk to an autistic child who has difficulty with that reciprocity, how to really push forward, even though their manifestation of understanding is not what we expect. In my view, I feel it is dangerous to assume that Adam does not understand as much as it is to take for granted that he can just learn the way a typical child does. Yet all those years of puzzles, functional skills and communication issues makes me worried that Adam is missing the most important component of life learning, that is, to ask questions about everything. I’m quite sure I will be writing more about my in-house experiments here.

That said, I have a short story to tell. With some severe weather hovering around Toronto, there was a downburst, or a tornado. Both Adam and I enjoy watching the weather reports. With bad weather, we are glued to the TV. I was talking about funnel clouds and how they are dangerous.

“Why?” Adam asked.

“Because they can rip down houses and trees,” I said.

“Why?” he asked again. I am thinking about a three-year-old I once knew when I was an older kid and how every answer to a question he had ended up with yet another “why?” Like that, the conversation went on a bit between Adam and I. He kept asking me “why?” until I ran out of answers!

For a typical child, asking “why?” is expected. For an eight-year-old developing autistic child, it was another one of our milestones.

With that “why?” also came a series of sentences and conversations this week. With those conversations came difficulty falling asleep and some body jerks. Also interesting that along with an increased in verbal expression came an improvement on his fine-motor skills at the dining table as well as gross motor skills I noticed while watching him outside climbing structures I’ve never seen him climb before. Could this be a reason for the sleeping issues? Could his body be a-buzz?

Again, I am making a possible correlation that needs to be tested because dad let him sleep in over the weekend (school was out) and this is reason enough for not being able to go to sleep the following day and, perhaps lack of sleep and other frustrations lead to more body jerks. Yet I also wonder, only because I’ve seen it before, if sleep issues and body jerks have to do with an increased output of communication and other “manifestions,” — overall “progress.” So often we view “issues” as a result of “delay” and “behaviours” and we label it as if it is something we have to get rid of or something that worries us. Yet, with this example, Adam is trying so hard to express himself and his body may be following him as it attempts to process the steps we have taken for granted. If we take a view that such preservations, behaviours, sleep problems might have to do with processing, progress and development, how might we address and teach autistic children differently?

It’s something to think about when we study autism and when we rethink the, perhaps, very “normal” path of autistic development.

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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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It is also highly ironic that I write about art and that the art world seeks so many words to critique and analyze it. Yet, at the end of the day, we have a gut response to art before we have an intellectual one.

I was thinking about this as Adam has turned to art. This is not just peripheral observation…it goes deeper. Adam studies all the elements of things with ferocity and concentration. He will hold any object in his hand — even a part of an object, turn it around and study it, tap it and consider all of it’s physical properties. He may or may not label it, as he has done since he was eleven months of age (labeling, that is), but I consider that his sharing in this manner is simply his way of sharing with me because he has trouble with words. Yet, his understanding goes far beyond the label.

W.J.T. Mitchell, in his essay Visual Literacy or Literary Visualcy? (excerpted from Visual Literacy edited by James Elkins) asks how seeing is different from reading. “Even more interesting, what would happen if we reversed the positions of tenor and vehicle in the metaphor, and treated reading as ‘tenor’ — the thing to be explained — and vision as the vehicle that might help explain it? What would happen, in other words, if we thought of our task as one of research and teaching in reading, based in models drawn from seeing and the visual system?” (p.11).

It is in this vein that I believe we can begin to explain our words about autism and challenge our very basic assumptions. For instance, consider the two drawings below. Adam, at the age of 8 has fine motor planning difficulties. It is very hard for him to hold a pencil or crayon, but in the first drawing one can see it’s coming and that he is trying extremely hard to express himself.

The drawing beside it, also a Lion, was executed by a same-aged “typical” peer. By contrast, one can see the marks in this drawing made with strength and certainty whereby Adam’s drawing seems a little tentative and soft by virtue of his motor planning difficulty. Take another look. Adam took great care and time rendering that drawing. So much so, he even walked away, came back to reconsider it and lightly put the finishing touches carefully on the tail several minutes after it seemed finished. It was so lightly drawn that it was difficult to photograph. Look at the perspective and how he tries to implement it. It is not a flat drawing. He can see how the body has several dimensions. Compare it to the “same-aged typical peer” drawing — wonderful in its own rite but by contrast, there is, as of yet, no conception of perspective. In one drawing the earth is round, in the other, flat.

Adam's "Lion King"

A drawing of a lion from a same-aged "typical" peer

It is interesting to me to watch Adam’s “visualcy” manifest. It is interesting because he does not fit into any developmental mold. While his hand his light, he is ahead of the curve by way of his perception. One might mistake motor-planning difficulty with Adam’s “retardation,” as it was formerly labeled. Now how dangerous is this when we consider how to teach an autistic person? What assumptions about his intelligence are we making? When I think of schools I get extremely nervous about moving him too slow or too fast. One simply has to SEE.

——

Reference:

James Eklins, Visual Literacy, New York: Routledge, 2008.

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We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

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Certainly the idea of giftedness, which happens in non autistic and autistic persons, can be yet another stereotype in assessing autistic people. Perception, on the other hand, is something to think about deeply.

When Adam was very young, we had these water blocks that were dyed different colours. Adam was mesmerized by these blocks watching the water swish and swoosh. Then all of a sudden, my wobbly toddler took them up to the window and peered through them. Ah, I thought. If only we could all stare at the world through coloured water blocks. How beautiful it would be. I know was also in part a cooing mother of a young autistic boy, so anything he did like this made me hyper-aware. But still.

When he got his “legs” and we began walking around the neighbourhood, Adam memorized his routes. To this day, if we take him to his old house and walk from there or the park nearby, he will remember how to get to that park or get back through the old “secret pathway” to the old house — which has even since been torn down and rebuilt! Remember, that was his two-three year old brain. In April, he will be eight-years-old.

Coming out soon will be a new version of Lewis Carroll’s Alice in Wonderland, directed by Tim Burton. Many people suspect that Carrol was himself autistic with his different perceptual abilities. He is often cited as a person who “suffered” from micropsia and macropsia, which is a neurological condition that changes the way the brain perceives the size of objects. When Alice falls down that rabbit hole, we get a look into Carroll’s mind.

Scientific American Mind published Extraordinary Perception by Wray Herbert this month. It discusses how psychologists at University College London “think that it might be a mistake to consider [autistic] distractability as simply a deficit. To the contrary, Anna Remington and John Swettenham and their colleagues speculate that people with ASD might have greater than normal capacity for perception, so that what appears as irrelevant distraction is really a cognitive bonus.” I added autistic to distractability as many therapies for autism as well as medications are geared at lessening it.

The test, the article shows, was for subjects to “rapidly determine if the letters N or X were present in the ring” on a computer screen. Participants had to then “hit the corresponding key on the keyboard. Some of the circles — those with more letters — were more difficult to process than others. There were also other letters floating outside the circle, but the subjects were specifically instructed to ignore those letters. Those floating letters were the laboratory equivalent of an irrelevant distraction in the real world.” In measuring perceptual capacity, researchers saw that “everyone was slower at the task when the ring contained more letters. The researchers were also measuring distractibility. When a letter outside the ring was one of the target letters (N or X), the subjects often took a longer time finding the N or X in the ring — indicating they were distracted by the presence of a target letter in the location that they were supposed to ignore.”

The researchers reasoned “that as long as the subjects’ total perceptual capacity was not exhausted, they would also process the irrelevant, distracting letters within their visual field. Once they had surpassed their perceptual capacity — once the ring of letters was sufficiently complex — irrelevant processing would stop [bold mine]. So if ASD subjects in fact have greater processing capacity, then they should process more distracting information even as the main task becomes increasingly complex.”

In conclusion, “although there was no difference among subjects in either reaction time or accuracy on the main task, those with ASD processed the irrelevant letters while solving much more complex problems...Put another way, they weren’t ignoring the main task, nor were they distracted away from it. Instead they were completing their work and moving on, using their untapped capacity” [bold mine].

This article also concludes that while this is a benefit, it also does have “real-life consequences.” They begin and end the article citing Tim Page, an author with Aspergers from his book, Parallel Play: Growing Up With Undiagnosed Asperger’s. Page recounts his time in school who failed an essay about his field trip which was quite detailed in terms of his way of perceiving it, and how he was scolded for writing in that particular way. “I had noticed the wrong things,” he writes.

As a parent of an autistic child who has difficulties with verbal communication, I have to ask the question: “whose problem is this anyway?” Certainly I have been dealing with issues, at least issues for me as Adam cannot comment here yet, so I am fully aware that I need to be fair. He has very real sensory and perceptual differences, so I set up a basement full of equipment for him to self-soothe. He has even learned to “self-regulate” by going to read his own books, and I never had to teach him that. His body will completely quiet as he flips through pages of encyclopedias, dictionaries, cookbooks, among many other subjects. He may even appear to layperson as not really paying attention and just flipping pages, but I know it’s more than that. His body-jerking almost always stops, which is how I conclude that he is soothed by his books. I am imagining him looking at those books over and over again, and what he may be gleaning from them. Still, when it comes to getting the responses WE need, he using a “special” reading program at school. Indeed it is really helping with his expressive reading ability, and maybe even with his vocabulary. So I need to let him do both. He needs to learn to respond in a world that doesn’t yet understand the way he learns. He also needs to flip through pages and pages on his own. I can sit beside him sometimes also and talk about the books he is reading. We can type about what he is reading, we can draw stories and make more conclusions or assumptions about what he is reading. When we do things together calmly, we are having lots of fun.

When we teach him a new communication device, it may appear to the person who is teaching that Adam is not focused enough — indeed he appears to be “highly distracted.” On an AAC device (we are still awaiting one from a service-provider here in Toronto) his finger will go to the right picture, letter, or answer, and then he will quickly go to another one to check out what it will do. A keyguard helps him direct his finger more quickly to the correct response. He may have trouble finishing sentences (when he types) and then be reminded to “stay on task.” This is in large part what Facilitated Communication attempts to assist with if done correctly — to remind and assist with the focus. To a person who cannot detect that Adam was about to give the “right” answer (or rather the answer that was requested of him), he would receive a failing grade. Adam is very young and I believe he is not given the benefit of the doubt enough, although his team members are good with this.

It is only fair to say that we do not KNOW everything he knows. We do not fully understand how he takes all this knowledge in and we are the ones that deem his versions of knowledge as irrelevant. We have not developed sufficient ways to measure his responses or his way of learning and seeing, except for the ways we measure responses and knowledge from people who are not autistic. This brings me back to the old ABA adage, “if we can measure it, we can deal with it.” Unfortunately, the way we have historically dealt with autism is by eliminating the behaviours and learning patterns that are essential to an autistic person’s existence. Perhaps continuing to fund this research more heavily is important because as we understand how autistic people learn, we can not only develop better learning tools, but come to better appreciate our children.

Trying to understand this is a first step. As Adam’s parent, I see many of the so-called “issues” being mine, and yes, I become just as frustrated as many other parents out there. It’s really hard to see Adam in distress and it’s even harder to always be guessing what may be causing anxiety or body-jerking (Lack of calcium? Trouble at school? New self-awareness of difference? Trouble with transitioning from task to task? Lack of sleep? Seizures? A very long winter? Lack of exercise? Another neurological issue?…The guess work list is too long). Since Adam appears to be in discomfort since late last fall, I am really working hard at figuring this out (wait-lists are long here in Toronto). Sleep issues, anxiety issues — I know when I have a level head, there is more that I can do for him to ease the situation. We need science now to figure out many of our questions.

Sometimes it feels that makeshift solutions only lead to more issues. Sure, we all want things to be a little easier, but Adam requires more consideration in order to achieve that balance between helping him through discomfort as well as accommodating his needs. As I have been through a difficult year, like many of you out there, I completely understand the reasoning, but I have to keep a level head and look at what Adam has also gone through with a “broken” family. I have needed my sleep, but if Adam cannot, I have to find safe ways of letting him stay up until his body will sleep naturally. I know what I’m saying isn’t easy and there are still days I will resort to the Melatonin, even though, because of the guesswork involved, it pains me to do so. Yet I also know it’s important to stop and slow down and think about how Adam feels and perceives. When I do, everything seems a little easier. As a parent, I can even become proud of myself (it’s important) that I’ve not only managed well, but have helped Adam out too. We are still on that path to finding out if we can help Adam, but I am always wondering excessively about how I perceive the “problem.”

I’m interested in what people in science think about this Perception study. I think we have to spend a lot more time imagining what it feels like to be in Wonderland.

——-

Excerpts from:

“Extraordinary Perception” by Wray Herbert in March/April 2010 issue of Scientific American Mind, pp. 68-69.

Further Reading:

Selective Attention and Perceptual Load in Autism Spectrum Disorder, Anna Remington, John Swettenham, Ruth Campbell and Mike Coleman in Psychological Science (in press). Published online October 14, 2009. www3.interscience.wiley.com

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