The New Technology and Autism Awareness

Filed Under (Autism and Intelligence, Autism and Learning, Communication, Development, Uncategorized) by Estee on 15-02-2012

This article on technology and autism appeared in The Globe and Mail today.

I’m worried that some people will view it as another autism miracle. Don’t get me wrong, I’m ecstatic about the iPad and other technologies and the awareness this brings about autistic intelligence. I have cited the research about the EEG’s and FMRI’s in previous blog posts where it shows the brains of non verbal individuals with various severe disabilities lighting up like typical brains. In other words, we have evidence that many non verbal individuals can understand what is said to them and have complex thoughts. What was presumed as “functioning at a level of an infant” can no longer be assumed.

I feel compelled to remind readers and hopefuls of a couple of things. The first being that non verbal individuals with various “severe” disabilities (I use quotes because of the way that’s been so misunderstood in terms of intelligence), have been using devices for years. Typewriters, computers, Vantage Lites, Lightwriters and more. With Adam, I chose to use the Alphasmart Neo because it was cheap and portable and I could download our conversations onto the computer. Yet all it offered was the chance to practice typing. It did not have the windows and picture symbols of other programs found in expensive devices. Now the iPad provides this.

Many of these devices are so expensive that it is not feasible for many families to obtain them, costing upwards of sixteen thousand Canadian dollars. Repairs can also cost thousands. The advent of devices like the iPad makes communication so much more accessible, although many adults and families can still not afford them. They may, however, be easier to get into their hands through schools and subsidies.

My point is that we’ve known for a long time that technology is important, and that autistic individuals can communicate with them. It’s not a sudden miracle or epiphany, I hope, to realize that autistic people are intelligent, and the community is as diverse as any other, meaning, that levels of ability and intelligence are variable in every group that we are trying to define.

Now to my next point. We can’t expect to plunk an iPad into the laps of our children and expect them to know how to communicate with it.

Just over five years ago, I began typing with Adam. I found I had to facilitate him by supporting his lower forearm. If I had not, he would have typed the letters over and over or typed a word he loved. It continues to be a challenge to get him to focus because open-ended communication is very difficult for him. Supporting him did not mean I directed him. I learned by people at the University of Syracuse, and through my own studies, how to support him and apply, in his case, a backward resistance pressure. By actually holding his hand back from the keyboard, he had to type with more force and intention and this seemed to help him complete a sentence. I neutralized his hand in the centre of the keyboard and he went from there.

I received a whole lot of criticism because of the FC controversies back then. I still did not give up. I knew, because Adam could read since eleven months of age, that he was a candidate to become an independent typist and communicator.

Fast forward five years later and we’re still at it. I’ve been observed by many Centres and professionals and I’ve not known a lot of what Adam types in order to prove that his communication is reliable. I do this by asking him questions or talking about things he did that I would not know. I have to keep my skills in check.

Today, he types somewhat independently. He sends me a short email everyday from school, primarily because they have not been trained in supporting him. If I need to support open-ended communication, my hand is further back on his arm. He will usually say the word or letter now before he types it and he types fast that if I don’t slow him down, he may lose sight of what he is trying to write. For communicating wants and needs, Adam can verbalize or type on his own. Give him YouTube, and he’ll type whatever he wants — from “water slides,” “Walt Disney,” and “Psychedelic Cartoons.” We recently visited an AAC expert (Augmentative Assistive Communication) and her response to my support was that my method was not very “facilitated,” just some marginal support. Not only that, all the nuanced support I give him all the way down to my patience and energy is difficult to document, but so important in teaching how to use a device for “functional” or “social” communication.

Adam also uses picture symbols on devices. For this, he can communicate mostly on his own, unless he gets distracted or is very anxious. When an autistic person is anxious, communication tends to fall apart. Text to speech functions have enabled him to speak in full sentences.

We are still learning. My point is that I am always learning to be an effective and patient communication partner. Reciprocal, social, open-ended, unpredictable communication is not so easy for him, and many other autistic people like him. While technology is a doorway, we can’t just open it without excellent guides, or without the commitment to keep at it for many years, even perhaps when it seems as if we are making little progress. When someone says to me that “Adam doesn’t type with me,” I immediately know that there is a lack of training or understanding what being a communication partner really means. It is an affirmation that the expectation and onus falls upon the autistic child — not the parent, therapist or teacher.

My hope is that, in addition to providing much needed resources like communication apps and iPads, we have better understanding and training to engage with autistic people as they are. Adam mostly communicates in metaphor. His language acquisition is unique and different than that of his typical peers. He could read and count by eleven months of age, but he couldn’t “talk” to people. Certainly he didn’t stop acquiring language or learning after that! As I’ve watched him over the years, I try to see the way he scaffolds his language and knowledge. His language and way of seeing the world seems mostly associative, symbolic and visual.

The iPad and other accessible technologies are encouraging in so many ways. I hope that the EEGs, FMRI’s and the other “proofs” we seem to require from autistic people in order to validate them, also lead to an enthusiastic desire to understand autistic people — their value, humanity, and of course, how they learn.

Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patience With That Egg

Filed Under (Acceptance, Adam, autism, Autism and Learning, Communication) by Estee on 05-12-2011

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

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

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

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

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

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

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

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

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

What About School?

Filed Under (Autism and Learning, school) by Estee on 30-06-2011

There is a lot of change facing Adam again and I, as his primary care-giver. After all the years of worrying about schools, I see that we may have a variety of options that may require us to re-juggle our days. I knew this day would come. I wrote about many things regarding schools and it’s not easy to be in the midst of it and have an opinion at the same time. The process of evaluation has now begun: the eclectic ABA school, the public or Catholic school, the online/homeschool options are on my list. Don’t you just love when people think that there is a rainbow of autistic schools out there that actually suit every autistic child on the planet?

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.

One Good Teacher Makes All the Difference

Filed Under (Acceptance, Adam, Autism and Learning, Inspiration) by Estee on 14-04-2011

Adam has a new teacher at school. Immediately, she ripped down the clutter on the walls that distracted Adam. She has Adam learning about money, in “taking circles” with the other children. Reports are Adam is doing well in school and wants to pay attention. Before this teacher, we were worried about Adam’s attention and even tried Ritalin for a couple of days. It just took two days and I couldn’t take watching my son transform into a person I didn’t recognize — his eyes glazed over and his legs twitched uncontrollably. Adam lost his joy and personality which seemed like much too big a sacrafice even though he was completing tasks like a robot on speed. I polled numerous parents who do have some success with this and asked how long it actually takes to get the meds “right.” Some parents said “years,” and “never,” because a child continues to grow.

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.

For The Love of Letters, Lists and Other Things

Filed Under (Art, autism, Autism and Intelligence, Autism and Learning, Development, Obsessions) by Estee on 10-03-2011

I love letters. I’ve loved typeface since I was a child, remembering picking up my mother’s collection of old brown volumes of Encyclopedia Brittanica. I admired the letters, words and sentences before I could read them. Around the age of four, I tried to write letters of the alphabet by sounding them out. I was proud as I showed my mother warbled symbols drawn with red crayon. I don’t know if I wrote all the letters correctly, but I yearned to read… and write. 

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.

Bosch Junior

Filed Under (Adam, Art, Autism and Learning) by Estee on 26-02-2011

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!

The “Severely Autistic” Go To College

Filed Under (Acceptance, Activism, Autism and Learning, Inclusion) by Estee on 25-02-2011

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!

What Ritalin Told Me (So Far)

Filed Under (Acceptance, Autism and Learning, Pharma) by Estee on 23-02-2011

Adam went on a short trial of Ritalin last week, not for autism but for the ADHD he now apparently “has.” Please, I’m not trying to be cynical. I just believe in a healthy dose of skepticism for the sake of getting things right for my son. There are many of you with a lot more experience with medications, and I value the input you have given me on my Facebook page.

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.

Creative Behaviour

Filed Under (Art, autism, Autism and Learning, Inspiration) by Estee on 09-02-2011

I’m thinking a lot about behaviour today. I don’t often re-post the articles of others, but in my search, I came across this blog: Forward: FWD (feminists with disabilities) For A Way Forward.

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.

Parenting An Autistic Child

Filed Under (Acceptance, Autism and Learning, Inspiration, Parenting) by Estee on 08-02-2011

We’ve been peaceful around here. This morning Adam picked up my guitar that I’m learning (really slowly), and he played it himself, strumming and enjoying the reverberating sound. I guess watching me and other people has inspired him. He already takes piano lessons and that’s quite a formal learning process that he doesn’t always like — we adapt the lessons but this type of teaching still requires those old reinforcements (I call them bribes… let’s face it they work and that’s exactly what they are. Must watch out though, he knows that he’ll get that candy if he acts silly too). So, with the guitar, I want to let him explore. I took Royal Conservatory lessons for many years growing up. Piano teachers never liked when I sang in plays, or learned music by ear — which I was really good at doing. No, they were set in their formalized teaching method and there was no way I was allowed to waver. “It’s either the play,” said one of my piano teachers, “or piano.” I didn’t understand why one had to come at the expense of the other — it was all about music. I listened and won a few first place prizes at the Peel Music Festivals every year, but I played a lot more when I did my own thing. Perhaps we need more room for marrying creative exploration and formalized teaching. There’s a lot of treasure that’s discovered from staring out of a window, and learning things in our own unique way. It’s part of the creative process. It’s creative behaviour.

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.

New Behaviour

Filed Under (Adam, Autism and Learning, Behaviours, Inclusion, Sensory Differences, Sleep, Transitions) by Estee on 04-02-2011

We talk often in autism about a dissonance of skills and “uneven learning.” It’s an easy thing to notice or say, but it doesn’t seem that easy to accommodate. Not easy, because we still have the expectation that an autisitic person must respond typically.

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.

The State of Education for Autistic Children (as I see it)

Filed Under (Acceptance, Activism, Autism and Learning) by Estee on 01-02-2011

Big snowstorm’s coming. It starts tonight in Toronto and is supposed to continue into tomorrow.

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 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.


Filed Under (Acceptance, Autism and Learning, Behaviours) by Estee on 05-11-2010

Tagged Under :

I’ve always called Adam my “little hummingbird.” The way he flaps his hands and can dart back and forth, particularly when he seems to me “revved up.”

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.

The “Continuum,” The “Spectrum,” and Another Assumption That Needs Debunking

Filed Under (Autism and Employment, Autism and Intelligence, Autism and Learning, Communication, Sensory Differences) by Estee on 30-08-2010

I really like what Temple Grandin is doing in many ways. I like that she supports different minds and describes very simply and concretely what autistic people need and might be able to do as work.

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:


About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (, and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.