Estée KlarThe Joy of Autism

“It doesn’t matter who you are, or how high you rise. One day you will get the call. The question is, how will you respond?” – African American U, Senior Administrator

Adam left for camp this morning. Last week, he did well at his piano recital. His lessons have been adapted for him — colour coding left and right hands, bass and treble clef lines, to give a sense of the many adaptations we’ve learned. Not only have we adapted lessons for him so that he may learn in “typical” ways, but I also asked the teacher to let him explore the piano on his own, as well as have her play for him. I became a musician when I was very young, and a neighbour let me bang away at the keys doing whatever I wanted.

I was proud that Adam was able to attend and play well at his recital. I asked that he make his little bow, and sure, everyone thought that was sweet. Afterwards, as there was another special needs person as part of the concert, I was noticing faces as he sang — his articulation was challenged. I didn’t see gleaming “ain’t that sweet” smiles. I saw strained faces. Not until the children who were fluent with well-pitched voices were singing did the “ain’t that adorable” look beam as high as the church rafters. That effected me a lot, and I pay attention to these subtleties every day. I don’t think people realize the subversive effects of a mere countenance. I, at least, read faces well. Adam seems to pick up on vibes, but that’s my assumption after knowing him for so long.

Last week, Adam was more verbal — asking me “what are you doing?” when I was at work at my desk and he wanted to play. In addition to a successful recital and these questions, we had a “good” week. Having Adam ask me a rare question is exciting. I am happy when he gets more verbal, types on his iPad, and now, starts to ask me questions. When the camp bus came for a visit last week and Adam got upset afterwards, he typed (independently), “why is bus going?” It shows that his world is expanding by his growing ability to communicate. I find myself relieved because I think it will make his life more fulfilling, if not easier in a world that favours the able-bodied and the fluently verbal.

Two days after his verbal “spike,” however, something that comes and goes but improves steadily all the time (akin to a graph with a steady climb overall, but with monthly plateaus and slight dips), and also possibly correlating to the end of school, the transition to camp, a possible cold or allergies (get the picture?), Adam began to twitch more and he lost his ability to talk for a couple of days. He is better at being able to type a few words when he is under stress. He couldn’t do that at all before.

While I still worry, mostly if I see him uncomfortable when it happens, I’m getting better at waiting him out. Whatever is effecting him needs to be processed by him in his own way. Within a couple of days, although the twitching slowly abated. He started to smile and become more verbal after a couple of days of the most intense part of it. I really do not understand what is happening to him neurologically and neither does anyone else. Only some autistic people can give me a sense of it. There is no guru or expert or scientist who has truly “discovered” what causes Adam to tic and twitch the way he does. We know of similarities in other disabilities. Adam was tested for seizures and at least on the day he was tested, it showed negative. These are but some of the things we don’t fully understand about Adam and what we refer to as his autism.

As his mother, I’m well aware of my bias, in spite of my enduring “acceptance” of him. Bias and ideas are so deep-rooted in us that acceptance is something we have to work on every day. (Boy, would I love to read that caveat in someone’s research paper on autism). As Adam’s mother, I realize that although I love him dearly and accept him as he is, it is still difficult to resist the temptation to praise Adam’s “normal” feats and accomplishments only, and not recognize his autistic ones. Like all of us, we are under such a strong ableist or “normalist” influence that we don’t praise, cite, recognize autistic-ness as often as we need to.

We need so much more of a new kind of autism research — one that captures autistic accomplishment without sensationalizing autism. Too often any achievement by an autistic individual gets refered to as “genius.” While in some cases in may be extraordinary, we do this because we are still not looking at autism as a whole in the way we should look at all of humanity. We fracture autism into little bits and pieces as much as we end up doing people.

When I attended Autreat too long ago now (I am due for a revisit), I purchased fifteen years of workshop notes and presentations. I remember when I attended being giddy that there were workshops for autistic kids on how to make their own stim toys. Autreat, founded by Jim Sinclair, who is also autistic, is run by and for autistic people.

For months now since he started in an autism school especiallly, despite my praise of Adam for his feats, I still wonder how I can nurture his autistic-self. So I went downstairs and dug the old material up. Here’s a clue of what I wish to study more about:

How to Play With Dolls: For Kids and Adults Jim Sinclair, disability educator and consultant, coordinator of Autism Network International

For purposes of this workshop, a “doll” may be any inanimate object that we play with by imagining it to have aspects of personhood. This includes the traditional toy-human type of doll, as well as toy animals, and any other toys or objects that our imaginations transform into living entities. In this intergenerational workshop, we will share and explore different ways that autistic people can use doll play for fun and for learning, and ways that parents, educators, and therapists can use doll play to help autistic people in developing skills and understanding…”

Music: What Is It, What Does It Mean To Us, and How Can We Use It?
Katja Gottschewski, musician and music therapist, Bodo, Norway

In this workshop, we will explore different aspects of music. We will look at differences and similarities in how we as individuals or as AC’s and NT’s [autistics and neurotypicals] define and experience music. It will be discussed how we can communicate through music. How is music different than language? Can music be a bridge between AC’s and NT’s?

Understanding How Plants Can Facilitate Connection in Autistic Children and Adults
George Salamunec, HTR, COTA/L, Certified Master Gardener, Susan Golubock, M.Ed., OTR/L
Autreat 2004

Working with, and understanding about, plants can be an effective tool for developing the senses, reducing stress, and learning to make new connections in autistic children and adults. Matching plants to one’s personality and needs is an important first step. Plants provide opportunities for autistic children to explore life, nurturing, modulation, non aggressive options and choices for dealing with natural adversities, and why learning about other life (and people) outside of ourselves is so important…

Making Employment Fit: Accommodations and Other Dirty Words
Joel Smith, Autreat 2004

Employment is difficult for many autistic people. We are square pegs who dont fit nicely into round holes. Rather than forcing the autistic into a job, would it be possible to change the job to better fit the autistic? In this presentation, ideas and real-life examples are presented of how jobs can be modified to best accommodate autistic sensitivities. We will also discuss how to modify your job without alientating your boss and co-workers.

That was from Autreat 2000 and 2004. Twelve years later, I am concerned (especially after attending IMFAR), how we hardly research autistic ways of being. We usually do it framed in a bias — comparative research against the “normal,” population.

We really don’t value what makes up the true and different, “not less,” accomplishments of the autistic person. I’ve read blogs where “experts” bluntly claim that there is “no value” in lining objects up. I’m not going to target the scientist specifically here, but I wonder how many readers of this may have at one time or another thought the same thing? Other than people like Temple Grandin, how can we all study the value of object-organization and how that is transferable into learning at school and later, in the workplace? I don’t think this is a trivial skill that needs to be solely relegated to the OCD side of the human column.

Just because we don’t see the value doesn’t mean it ain’t there. We don’t understand. We are viewing under a comparative, normal versus abnormal one, and that’s so limiting. While I try to make the “least dangerous assumption,” a term first coined by Dr. Anne Donnellan, I realize that I must work to continue to see Adam for who he is in all contexts. It’s a absolute daily task and obligation of mine as his parent. I wake up every morning thinking about this, more than I pander to alarmism. In fact, next time an autism commercial brings you to tears, please ask what buttons are being pressed and why, and if there’s a better way to achieve a quality of life for us all?

I’m also reading Anne Donnellan and Martha Leary’s newly released book Autism: Sensory-Movement Difference and Diversity and I would highly recommend it. I liked especially this example:

According to Oliver Sack’s book, Seeing Voices, in learning sign in infancy he will develop brain patterns remarkably different from his ‘normal’ peers. And he will continue to develop in different ways, but we can in no way call those differences ‘deficiencies.’ He will develop different social and cultural skills. If given the most standardized IQ tests, even with a signing interpreter, he will perform differently, and possibly less well, than his speaking/hearing peers. On tests that tap the developmental experiences of deaf people he would probably score far higher than his hearing friends. Yet it is no surprise but nonetheless sad to learn that for decades deaf children were routinely diagnosed as mentally retarded. Still today, they are often considered to have diminished capacity relative to their hearing peers, even when we clearly know that they can flourish if given the appropriate education and experiences. (p. 33).

Consider that, for the deaf which we think we’ve come, arguably, to understand and accept, of how far behind we are in autism to apply this level of consideration. Think how far behind! Thankfully, a small pool (and I hope a growing one) of researchers are taking up this call. In Steven Kapp’s (et al) paper Deficit, Difference of Both? Autism and Neurodiversity, there is also a call to discover the state of autism acceptance and “potential areas of common ground in research and practice regarding [how] autism [is] discussed.”

Scientists, working with the community, can help stakeholders with competing agendas make informed choices between rights, responsibilities, and needs at personal, social, and political levels by affirming that diverse societies respect multiple perspectives.

I’d like to see us all work towards the question of how to nurture autistic strengths and learning and balancing the real need to cope in this world as a minority, as well as continuing to value autistic contribution and being in society.

A Whole Better World
Autreat, May 2000,
Clay Adams

I can imagine a whole better world,
Where people don’t laugh at each other’s pain
A world where the sun shines on every one
And one’s well-being is everyone’s gain

Must we, in fact, feed off each other?
Fool the unwary, to sell our wares?

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Adam happily skipped down the aisle at his sister’s wedding. He didn’t sleep the night before, mind you, so I had to go with the flow. The question I asked myself was what was really important in this affair? First Adam, of course. If he were to have fallen apart that day, I would have aborted the mission. That didn’t happen so my goal for him was to be calm and walk down that aisle. I was going to forget the photographs but he seemed happy enough to leave for the wedding on schedule. I made sure we arrived at the tail-end of the photographs to avoid long waits. I prepared his bag of tricks — food, fidget toys –and a schedule on his iPad using the First Then app. I used the photographs from our visit to the facility earlier in the week, and wrote sentences from the time we entered to the end of his wedding duty. I recorded my voice with the pictures, and he loved that. He reviewed it many times before we left the house.

Arriving to the photography session, there was excitement and fuss — tightening his bow tie, buttoning his jacket, and he didn’t like that much. He wasn’t given any processing time. Then, Adam was lugged by the hand from this photo to that. He wasn’t happy with that either, but maybe there’ll be a couple of decent photos. Dad walked him down the aisle for practice and I asked if he could be excused from the formal rehearsal thereafter so he could have a quiet room and a break. This was successful. He ate some food, sat on the couch and seemed very happy. I think this was his chance to process where he was and that he was finally at Serena’s wedding, for he indeed said “Serena, Serena…” followed by a giggle.

Then we were asked to vacate the groomsmen’s room. We walked about the facility slowly, saying hello to people coming in. We were to wait around near the room where the wedding party would gather prior to walking down the aisle. Dad came when it was time to collect Adam and I took my seat.

Finally, what felt like a mile-long aisle, Adam walked down in the hands of his two older brothers and I fought back my tears. He started to skip a bit…Adam likes skipping more than walking. His brothers brought him to me and he sat down for the rest of the ceremony until the end, noshing on lollipops and a bag of grapes. He was picked up and driven home after the ceremony as I knew he would be exhausted from a sleepless night. Otherwise, he might have stayed at the party a little longer.

Later that evening, I looked at my phone and read “ambulance.” I quickly rose from my seat and called home. My parents, who took Adam after the ceremony, were with him at my home. They heard a sudden crash and went to check on Adam. He seemed okay so my father looked out the window. Their car was totaled in my driveway from an elderly man who lost control of his car (and tried to get away). I was so relieved to hear that no one was hurt, but I felt sick to my stomach that they had helped Adam out to make it possible for all the intricate wedding scheduling to happen, only to have their car wrecked. I know, it could have happened anywhere, but still.

~

The wedding is now over and after decompressing, Adam is back in school. I’m going through reports as I prepare for this summer and his next school year, as I will be returning to grad school in September in Critical Disability Studies, hopefully to help Adam, and to answer the many questions and issues I raise on this blog. There are so many that I would like to make a contribution to the body of work on what kinds of help autistic people need in order to contribute to society as autistic people. I thank many autistic people for helping me with that question when I first created The Autism Acceptance Project. These conversations happened years ago when I was seeking input from autistic adults in creating an autism organization. Many parents want to get involved and for good reason. Yet, I thought that the charity models weren’t supporting autistic individuals well, and wanted to discuss this. I feel it’s now time for me to go back to the drawing board and contribute to the science.

~

Adam recently had a series of standardized academic tests. The testers acknowledged in the report that these standardized tests do not accurately reflect Adam’s “true potential,” and they have ordered the Ravens for him. Still, the report puts him in well-below average ranges. I don’t think there is any typical parent, who came home with a report card without at least a B, who hasn’t inherited the same feelings of what it means to be “successful.” My little guy who stims a lot, who can’t sit still, was placed in a little room for three days and expected to work for two hours at a table — while some painful teeth were coming in. While the testers acknowledge the many limitations for testing autistic folk like Adam, changes have not yet been made in terms of how we evaluate the autistic population. The testers stated that there should be computerized tests and I would add, there should be a sensory room and tools such as seating pads, and even a trampoline if necessary.

It was suggested that Adam have lots of breaks in school, use the iPad and computers for learning, yet the tests to determine autistic ability, intelligence, as well as areas that need to be further supported, don’t yet accommodate this learning style. They noted that in some areas Adam functions at a 13-year-old level and in others (like Math) at a grade one level. When I was in the testing room with him, I also realized that the many items they were asking Adam about, have NEVER BEEN TAUGHT to him. How, I thought, could he answer so many questions accurately when no one has even taught him these very specific things? I realize that no matter how much I talk about this, my comments seem to fall on deaf ears. Yet, this is an important link and a reflection of how Adam can teach himself. In this alone, we have to acknowledge an autistic learning pattern and ability to learn overall. In particular, Adam had excellent pattern recognition, and he knew sophisticated words that I know he has never been taught in school. Since he’s been very little one can always catch him reading a book, although I think most people don’t believe he was actually reading.

When I hear on the news of an autistic person having disappeared with a description of their functioning level, it frightens and disturbs me. I cringe when I hear that the person “functions at a five-year-old level” when they are 16. True, there is real disability here. But if I know Adam well, and I do, watch him type what he wants for a YouTube video, or something on the Internet. Listen to the teachers who also see Adam “perform” with 100 per cent accuracy one moment, only to unravel to “a four-year-old level” the next. That to me is the nature of Adam’s autism. Having people understand the variances is so difficult and it’s tempting to want to give up. Making sure Adam is not placed in a class where he puts the same puzzle together seems to take enormous fortitude. We have to continue to serve, to address disability not as something to be ashamed of, but respected and accommodated, while ensuring autistic people receive the education that they rightfully deserve. This has to start at understanding not only the impairments but in the pathways and methods that are successful to learning. In addition, our charities and scientists have to work harder in promoting the value of the autistic population. Without this premise, we won’t be able to accomplish our important goals. Going from theory to practice takes a long time. We also have to also start in the testing room with the tools we have now.

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I’ve got days when I worry about Adam and how his distress is for him. The one thing that’s the most difficult for me to cope with as a parent is watching my son go through distress. Any parent wants to take a cold or the “thing” that’s distressing unto themselves instead of on their child. As I try to experience the journey with Adam, I’m going out for a jog for him (he’s with his dad this weekend). It’s part of my new regime of not just being with him, but helping him cope with his buzzing, moving body. I’m running as fast I can so I can be with him.

I was really upset with myself on Thursday. Typically, we go to a grocery store after school and we try to do a different errand every day. When we went to the store, Adam reached for the candy. I let him put in in the basket. When he wasn’t looking, I put the candy back on the shelf. I’ve done it before and he hadn’t noticed. Did I think that he just misses things? Had I devolved to that? We continued our shopping for healthy food and went to our usual check out lady, Leda, who always has time for Adam. Leda is like my island of calm and acceptance at the checkout as more people stare at us lately. We chit chat and she talks to Adam in between his jumping and hand-flapping. I’m not going to stop Adam from hand-flapping (although there’s enough pressure from those glaring eyes that I often think about it) and there’s no reason to explain him in a check-out line, so people will just have to deal with it, okay? Sometimes if Adam’s hands are occupied, he won’t flap, but there’s something in me that hates doing that for the sake of not being stared at! This is but one aspect of Abelism we live with every day.

When we got home, Adam helped me carry the grocery bags into the house. He’s good with hauling weight now and I think it must be good for his active, buzzing body. “Groceries!” he implored and the crinkling of plastic bags sounded urgent. Adam looked through every bag over and over again. “Grocery bag!” he said, looking at me, then quickly moving on in his search. I realized he was looking for the bird-egg blue gummies he found on the shelf. When he couldn’t find them, he began rummaging through all my kitchen cupboards, since I tend to hide food in odd places so he won’t keep eating the junk.

“Oh Adam, I didn’t buy the gummies. I put them back,” I said. He wasn’t satisfied, and kept looking. “No Adam, mummy didn’t buy the candy,” as I tried to stop his frenzied body from moving fast from cupboard to cupboard. Adam’s face looked desperate, his anxiety mounted quickly and I was worried. “Here Adam, we have lots of candy. Have a gummy bear.” I pulled them from the top shelf, hoping this would satisfy him and I could sit him down to dinner, because when he’s hungry, he becomes more anxious. He pushed them away. “No….groceries!” he insisted. He tailspinned.

I felt horrible. How could I have been so sneaky and put something back on the shelf without telling him either no, or showing him I was putting it back? I know I have to always work on myself as autism mom, no matter how much I think I accept my son. I have to respect him more. During the flatspin, though, I found the parachute. It was music. When I could coax his writhing, lanky body onto my knee, I held him and sang. I got a smile. Then, we ate dinner.

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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.

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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:

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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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We naturally wish to describe and understand a perception that seems foreign to many of us. As a parent to an autistic person this means a lot to me — attempting to understand Adam’s perception. Autism “experts” write prolifically on describing what autistic behaviours “mean” and these behaviours, observed by non autistic people, get interpreted and become at best, anemic descriptions of a kind of human experience. Autistic people do better at such descriptions, for obvious reasons. Yet so often, words fail.

I thought I’d post this video by musician John Cage as it provokes some thought on trying to describe the meaning of sound, that which is sensory and pleasurable, and for some autistic people, painful. As we know that so much of autistic experience is sensory, it got me thinking about the sensory experience — how life (that is, our “sensory life” ) is experienced differently by some and how others who do not understand human difference might attempt to explain inadequately.

Cage goes on to say that sound has no meaning — it just is. I thought this video was not only interesting for the purposes of thinking about perception, but also how we experience and attempt to describe autistic people. For me anyway, I felt some intersections when watching this and it in many ways reminded me of the In My Language video made several years ago by Amanda Baggs (which for convenience in case new readers have not viewed it, I have placed after the John Cage video):

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Thanks to a friend who passed along this paper (titled above) by Dawn Eddings Prince (formerly known as Dawn Prince Hughes) published in ETHOS. It is an endearing story of a mother with Aspergers to her autistic son.

Unlike Dawn, I am not a woman with Aspergers nor a primate anthropologist who has garnered much of what she has learned about humanity through primates. If you have not read her book, Songs of A Gorilla Nation it is a must-read. It has left its imprint upon me for years now. No, I am a mother of an autistic child, similar but not just like, her child, relating to my son in unexpected ways, finding my points of context from art and my own awkward experiences growing up — trying to overlay those in helping me understand Adam’s path. My stress has mainly come from outsiders who have put the pressure on us to change and be something other than what we are. I am glad to understand this stress and pressure in order to better help Adam chart his course.

From the time I began The Joy of Autism blog — and been downright attacked for it when it first started in 2005 (see right margin for the archive) — I was incapable of viewing Adam as that “blight” and “burden” that autistics were named. Everything Adam did was a downright miracle to me. Today, Adam — a kind, affable, giggly boy, has developed a curiousity and way of learning that never ceases to expand my own world and way of seeing things. Like Dawn’s son, however, Adam is changing, developing tics. He is growing into a world that he is beginning to understand in ways that I knew (and feared) he would. One could say it happens to all parents. Yet Dawn’s essay, however, cites a few exceptionalities to the growth.

People fear each other. The flavor of distance seems to me to be how a community organizes itself. The codes of distance constitute the law—for the living and the dead, so people close the lid on the toilet when they sit down to talk to someone else in the bathroom, signaling that they don’t intend to dominantly mark their territory in the midst of the other; and men can’t pick up and hold a crying child who is a stranger. This is why people always smile and say hello more often when they are on a trail in the forest, far from help, than when they are on a city street.

Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs and rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears—he would cover them with his hands and rock, trying to get under the table. He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.

This essay is beautifully written. Remembering Teryk, her son, playing in the prototype sensory room set up at The Sheraton Hotel in Toronto, where I introduced myself to Dawn and received such a warm hug from her, I feel we share a bond beyond that introduction by way of this piece on the special privilege of raising an autistic child. It is the bond of easing ourselves into the world as both autistic people and as their parents amidst the deluge of questions, quandaries and challenges that continue to face our children all the while loving them and getting them for who they are. And who better than Dawn?

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This is the first article published by realtorsthatcare.ca that I wrote on making safe yet attractive living spaces for autistic children. Thank you, Zeshan, for both caring and for being interested in this topic.

While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

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A continuance of my last post “My Very Important Job,” I want to talk about how Adam becomes very relaxed by the ocean. The sound of the waves, of course and that beautiful sunshine — everyone was out on the beach yesterday on Easter Sunday, digging in the sand and laying around like beached whales. Adam I spend our days together and I take him to restaurants and new places to explore. I take Adam many places in order for him to become accustomed to them. He also enjoys new places especially when he’s relaxed. It is my goal as Adam is able to travel — although we have had difficult moments in our eight years. Yet I’d have to say that the difficult ones are rather rare, which might be why I tend to spotlight them when they occur. It’s funny, really, because as I talk to other parents, it seems to me that other “typical” children have had heart-wrenching tantrums. When Adam is distressed, what is heart-wrenching for me is not the “behaviour” but rather the fact that he can’t tell me with words what he needs. As his mother, I’ve had to learn to never take Adam’s movements, gestures, even types of cries for granted. They are all important pieces of information to me.

The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.

Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.

During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.

Here, happy, relaxed and spending all of our time together, Adam has spoken the following:

Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!

Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”

Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”

Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”

There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.

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We are confronted with new challenges in our new home. Adam seemed to transition well at first, but now it is difficult again. As mentioned in the previous post, we do not know if Adam’s spasms are seizures or are spurned by tumultuous transition. On my end, all I want to do is get back on track with Adam. I for certain want my sleep as I function horribly without it. I want him to get over the hump as smoothly as possible until he can have his tests and/or become comfortable in his new home and situation.

But there’s another problem.

It could be me.

I need to re-learn my ABC’s. Remember those: Antecedent, Behaviour, Consequence? We put an autistic child under our neurotypical microscope (as if that doesn’t cause distress), and evaluate the antecedent (or cause) of a behaviour so that we can seek to change (or eliminate) it. The Consequence in behavioural-speak is what happens after the behaviour. I’m not saying that these tools are not useful to us. They can be if we learn how to assist autistic children cope. I’m not a fan of eliminating behaviour. But there’s another side to this story.

When I worry I am studying Adam. I watch for every little sign. Then I realize that I’m not watching myself. How am I feeling? How has my anxiety triggered a course of events? Adam just wants to explore, and yes, he cannot sleep like most autistic people who, as they become adults, learn to cope on very little. In his new home, Adam is very “disorganized” in his body (for those unfamiliar with this language, it means that Adam is moving his body in unfamiliar ways or hyperactive ways and it can appear distressing), and I still do not know for sure if it’s medical.

Yet, I also am thinking he is learning about every nook and cranny of the house as he used to memorize routes on road trips from school to home or from his old house to the park. While he didn’t get upset if we changed the route, he certainly memorized it. I’m thinking of Dawn Prince Hughes, author (and new friend of mine since I met her in Toronto a couple of years ago — little did she know that I was a HUGE fan of her book beforehand) of Songs of A Gorilla Nation: My Journey Through Autism and the excerpt on herself as a child running around in the same circle in her house. Experiencing this first hand, it’s exhausting for a parent who wants their child to “behave” or settle. Then I have to think again.

“The way I said ‘siiiilllverrr doooollllaaarrr’ was only the start of a profound pattern I had throughout childhood saying words and phrases in peculiar, experimental ways and having a complete fascination for words. When I was young, my parents and I often stayed at my mother’s new house, and my favorite uncle lived there also. A hallway ran around the perimeter of the house, past the dining room, the bedrooms, the bathroom, the front door, and through the living room back to the dining room, in a big circle. My favorite game (to the exclusion of all others) was to wait in the dining room for the adults to come up with a word — the more difficult the better — and then I would speed off down the hallway, in the same direction every time, either on my tricycle or on foot, repeating the word over and over.” (pp. 17-18).

Hughes describes then running to each of the rooms saying the word “where the word would absorb the comfort of my grandparent’s bed, their clothing, the beauty of the vanity table, and the smell of cedar drawers…” (p. 18)

Not only have I found Adam enclosed in drawers, but under the bed, and in the deep dark crawl space in our new basement. It takes a lot of effort for me to stay awake and keep an eye on him, as his safety always comes first. His body jerks, he lays on his back and holds his legs. He opens every cupboard, closet and drawer and is still absorbing them — and maybe he can do this better when he can enter them.  Save for the things that he knows — books, his computer that still has the same “Alligator King” from Sesame Street on it, and a cupboard full of crackers and goodies he now knows is his own, he is still disorganized here but is working so hard himself on trying to get organized and calm. Indeed, my boy is making gargantuan efforts.

To this Hughes writes, “I also wanted to keep as many of my own accoutrements as possible the same. This meant that I did not want a new toothbrush, new clothes, new shoes…When I went shopping for clothes with my mother [Hughes describes being afraid of mannequins]…My strategy for survival was to hide inside the clothing racks…the lack of light would calm me down. Hiding was yet another thing that later connected me to my gorilla family — when they went behind the hills to sit or seek out the little caves in the underbrush or rock to be by themselves, I would understand.” (p.21). Similarly, Adam has gone to the books that were the same from his old house. He is not interested yet in new things.

Adam’s grandparents have been around a lot to support him. I believe his grandparents are two of his favorite people (and most consistent). Again this relates so closely to Hughes: “When I was young I stayed with my grandparents on the weekends, and those were among my favorite times. I did feel safe there.” (pp. 21-22). Ask my parents and they’ll likely say that their condo is his “turf.” They have been helpful to Adam and I during this time.

Adam craves lemons during this year of transition. To this, Hughes writes, “I craved salt and would eat it straight from the shaker. I craved burnt matchheads and would suck on them whenever I could find them. I craved Alka Seltzer for its taste and feel….A sound like the thrum of a tumbler full of milkshake when is was tapped [Adam does this all the time] by a spoon or the Westminster chime of the clock would fill me with rapture.”

So I give Adam his lemons. Right now, I’ll buy him a bucketfull, although other people will tell him to “stop eating lemons,” or, “stop doing that.” Sure, I worry about his teeth, or of Adam’s safety in potentially dangerous situations. I’m not saying that we have to allow our kids to do everything, but I have to let him do more than usual and I have to change my behaviour to accommodate it right now, for this is an exceptional situation. I’m always trying to stay one step ahead of Adam to figure out how he can explore safely.

“Most autistic people need order and ritual and will find ways to make order where they feel chaos. So much stimulation streams in, rushing into one’s body without ever being processed: the filters that other people have simply aren’t there. Swimming through the din of the fractured and the unexpected, one feels as if one were drowning in an ocean without predictability, without markers, without a shore. It is like being blinded in the brightness of a keener sight. Autistic people will instinctively reach for order and symmetry; they arrange the spoons on the table, they line up matchsticks, or they rock back and forth, cutting a deluge of stimulation into smaller bits with repetition of their bodies’ movements.” (p. 25).

This is quite an overwhelming statement for me on how Adam may be experiencing his new life situation. It is quite a disability and a sensory overload.

My point is, Adam is adapting as naturally as he can in a home that is entirely new to him. He will thrust his body upside down, will spin, will seek those dark tight spaces and not be able to sleep in his new bed precisely because he has not yet created his order. But he is doing what he needs to do. I, on the other hand, despite knowing this, am having difficulties of my own in managing it. Watching my son in distress distresses me. While this may be natural for Adam, it was re-reading some of Dawn’s excerpts this morning that helped me realize what I’ve learned in the past, but am now experiencing first-hand in a larger way.

I realize that I too am adjusting to my new surroundings as I listen to the house and figure out how I’m supposed to live in it. Things break down and I get frustrated because I am not yet calm and oriented, and this is difficult on both Adam and I.  While I feel guilty much of the time that my own anxiety is not helping Adam, I know too that we are not in control of everything that happens to us. Life happens. We are dealing with it. Like Adam, I am human.

So I was thinking about going back to the ABC’s and I thought of using it as a pun on behavioural-speak because what most of us want to try and do is “fix” the situation or behaviour. Today, I am reminding myself that this needs exploration and time — we’ve only been in our new house for a week! Not only does the alphabet, which Adam loves, stay constant in a world that is always changing, but re-reading Dawn’s book has helped me realize what tumultuous change feels like to an autistic child. It may require more effort on my part now to help him adapt by creating safe ways for him to do so. Adam will reach for his ABC books that always stay the same and he’s doing his part, and I am having this feeling he will eventually make lemonade out of lemons.

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