An Autistic Boy’s Life is Not A Paragraph

Filed Under (Anxiety, Books, Development, Parenting, Transitions) by Estee on 12-06-2013

Adam has progressively better days since the basement flood and croup. When he seems anxious or derailed by life events I quickly engage everyone on Adam’s team – what has worked well for him is more predictability, gentle voices, activity including sports and sensory support that befits him. All I have to do is write things down and Adam reads lists and stories for me. Countdowns work, clocks and the like. It’s important to set the time aside and concentrate on him until he feels better (and this makes me obviously feel better too). And while I’ve been bemoaning the loss of his cherub cheeks for quite some time now, puberty has officially begun. I can see it emerging as cherub cheeks turn in to pimply ones. It just really hit me this evening how much he suddenly changed. It seems as if the last two weeks have presented us with a lot and although I knew this day would come, I’m feeling a little strange about it, like, poof…the childhood is now officially gone. Of course, the transition is longer, but sometimes the way we view things seems so hyper-real. I’ve heard that boys stay close to their mothers, and while I’m really cognizant of him needing to spread his wings and be a boy, a teenager, a man, I still hope he will indulge my affections.

I picked a book up about boy’s development the other day. I scoured a few to read what boys his age go through. Of course, these are supposed to be boys with typical skills, but I still found it so relevant in terms of body development and feelings. I want to support Adam into his teenage will (and whatever else comes with it). When I looked for “autism” in the index, I was surprised, actually, to see a reference. I flipped to the page, situated in the first third of the book, and read the “warning;” that is, the “negative” things that a boy may not develop which might indicate autism. I was disappointed if not bored (while I considered new parents paralyzed with fear). I mean, when will autism be included in the long life development model that I need to read, and not as a blurb or a warning in a paragraph?

Adam’s life is not a paragraph. It doesn’t necessarily belong to the “special” boys category of books, either. It is a long, developmental line (and hopefully life) and he feels and just like other boys feel, and sure, then some. It would be great to acknowledge all boys, not matter what their label, integrated within the context of a full and whole boyhood – to include the ways that all kinds of boys may experience their bodies and feelings. Yet, autistic boys get books on different shelves (if we get any at all outside of Jessica Kingsley). Maybe we should simply ask that our boys getting written in.

The Curiosity of School

Filed Under (autism, Books, Contributions to Society, Inclusion, school) by Estee on 04-09-2012

It is the first day of school for just about everyone. Most discussions about autism has to do with learning and inclusion — keeping our children integrated, or keeping them home-schooled when appropriate, or even better for their needs, developing social skills, academics, life and communication skills. No matter what methodology — or school — we may consider, this question lingers–what we are trying to accomplish and how is equality reflected (or not) in our school systems?

I still struggle to fit it all in — a list of goals for Adam measured against the hours of the day and his own abilities, pace and interests. “Following Adam’s lead” seems like an easier solution, and the ideas of “pushing” him, or any child for that matter to reach their “potential” and “following his interests,” are ideas in constant tension in the autism community. Add to that the idea of “normalizing”or becoming a “productive member of society” against our ideas of what productivity means for a variety of different people, and we come up with more important questions about how we should help autistic people. Some might contend that our current notion of productivity has more to do with amassing material goods than about contributing to society.

Autistic education is located within our ideas, and conflicts about the idea of what we feel a school should be in this economics-as-material-consumption sense. Zander Sherman explores this and looks at the development of schools in Prussia which prepared students to become part of a strong army. He looks at testing, private schools, the military.

His new book is called The Curiosity of School: Education and the Dark Side of Enlightenment. The Globe and Mail reviewer, Ben Levin says that Sherman’s thesis seems to be a quote from Einstein that he uses at the beginning of his book, “It is a miracle that curiosity survives formal education.” Sherman was home-schooled himself until the age of 13 and thinks “that mass education is excessively focussed on the wrong things — compliance, a narrow curriculum, preparation to fit into a society and economy — and thereby does not give sufficient attention to real education, the pursuit of curiosity and personal challenge.” (Saturday’s Globe, page R15). It would be interested to review the book against others like Elusive Justice by Abu El-Haj and others that deal with education, equality and social justice. I have to ask, how do we nurture and promote Adam’s own curiosity? Do we recognize and value it if it appears different to us? Isn’t this value we attribute part of his right to be equal and different?

Adam is back at school as am I. We have always used the modes of learning that we have at our disposal, that seem to suit him best, but we have to admit our limitations in understanding our children. We try, they try, and as his mom in thinking about his whole life and the “quality” of it, and even how we define that, I feel it’s my duty to him to ask myself the harder questions.

How Can Our Autistic Children Participate?

Filed Under (Acceptance, Autism and Learning, Books, Inclusion, school, Travel, Uncategorized) by Estee on 20-08-2012

“Our job isn’t to figure out if a student should be participapting. Our job is to figure out how a student should be participating.”

This is a line from Paula Kluth’s DVD, author of You’re Going to Love This Kidon inclusion in the schools.
We are on the brink of another school year. Many parents struggle with finding not only a placement for their autistic child, but the right placement. In Canada, as is for many places in the world where children are more likely than ever to be included, children and parents with autism are still some of the most excluded in our society. I often find it shocking the lack of support in my country where we seem to have otherwise great social supports. Despite there being many great and willing teachers, the school system is still one of the most unjust insitutions for autistic students.

While many of us work to change attitudes and policy in Canada and the US, I want to reiterate what an important step integration and inclusion is for all of us. Watching Adam at camp and even younger people with disabilities, the younger generation already has much more exposure to kids with disabilities than my generation ever did. Many a parent I’ve met will register their child into an integrated school in order for their children to respect and value everyone. After kindergarten, however, the segregation typically begins. While we may have seen more effort towards inclusion, we are still teetering between the two extremes.

Watching Adam with other children and their patience and acceptance shouldn’t just happen once in a while or at summer camp. Adam has developed so much this summer, as he does every year, and his peers do too. They are much more tolerant and accepting than I can remember of my generation. It is an indication of how important it is to start inclusion young and from the get go. I believe it is the older generations like mine who simply let old habits get in the way. Watching how easy it is for children to accept human difference is proof to me that inclusion is good for everyone.

This post is dedicated a couple of submissions I received this summer for review: Paula Kluth’s website, DVD and book I’ve mentioned before, You’re Going to Love This Kid; Eileen Riley Hall’s Parenting Girls on the Autism Spectrum.

The key for teachers is to learn how to include. This involved adaptations in the presentation of lessons, to how a child can respond to lessons. Adam, for example, responds to multiple modalities, but the main way of teaching him and transferring his learning is through the visual — computers, iPads, manipulatives and actual experience in the field. Accommodations also include sensory breaks, exercise, and other adaptations to a classroom. For instance, Adam can focus better on a ball chair. Otherwise, he needs to move his entire body so this provides the feedback he needs right now in order to attend to his lessons.

While the pressure to “be normal” in its elusive forms and definitions was more difficult when Adam was younger, we have grown into another comfort level with our lives and ourselves. Adaptation is simply a wonderful way to make learning accessible to Adam and it’s a joy to watch him grow and learn. Paula has many tips on adapting lessons and changing attitudes so that teachers and schools can adopt full inclusion. She makes it sensible and inspiring. I suggest you check out Paula’s YouTube channel for more information.

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Eileen Riley-Hall is the mother of two autistic teenage girls and the author of Parenting Girls on the Autistic Spectrum: Overcoming Challenges and Celebrating Gifts (Jessica Kingsley Publishers). As the mother of a boy, I was wondering what I’d learn from Eileen, but knowing so many parents with young autistic girls, I had to recommend her book. Sometimes we just want to refer to another book by another parent for that down-to-earth advice. I would also recommend along with a how-to book such as this, all the books by autistic women including Donna Williams, Lucy Blackman, Dawn Prince, Temple Grandin, Jasmin O’Neill (among others) — some of the first autistic women to write from their own unique perspectives. I like to pair my parent-memoirs with those also written by other autistic people.

What I found most refreshing in Riley-Hall’s book was Chapter 8 on “The World Wide Web.” Most books written by moms of autistic children usually contain lists of therapies and websites that can seem overly-diplomatic, noting down every therapy out there for the parent to sift through without any critical analysis of the therapy, the way it came to be in the vast array of (and history) autism “treatments,” and the controversies and potential dangers surrounding them. In contrast, Riley-Hall offers some warnings and states the pros and cons of the many websites that parents must navigate when entering the autism community. “There are very distinct divisions within the autism community. So you have to know that whatever you read is fueled by an underlying position or philosophy about autism: what it is, what causes it, and how best to treat it..unfortunately there is very little middle ground in between.” (p.131). When I first started reading books about autism by parents ten years ago, I wish someone had provided me with that caveat.

In reviewing her list, it is apparent that Riley-Hall is recommending sites that support and accommodate the autistic as “complete,” an encourages society to value the autistic person. This book is part “how to” book and part memoir that makes Riley-Hall’s book accessible for the parent of an autistic girl. Best of all, it’s all about acceptance.

Best of luck everyone in prepping for another school year!

Carly’s Voice, Adam’s Voice & Augmentative Assistive Communication

Filed Under (Adam, Autistic Self Advocacy, Books, Communication) by Estee on 29-03-2012

Adam is talking a little more again. It’s the inconsistency in autism that people really have a difficult understanding. This is part of the disability that others need to learn. I’ve heard some people describe the spasms and twitches as the “neurological storm.” I take to that description not because Adam shows aggression, but because he’s all over the map with with body — his excessive need to climb, jump, move all the time, flap, jump again, spin, walk up and down the stairs, jump again…the little lad as a hard time staying still, and it’s not all behavioural. This is why he has a rigorous exercise program.

He’s also so “on” the past few days, though, and I thought it was important to write about it in light of the recent release of Carly’s Voice. Adam also has to move and twitch. When he has a cold, his system seems suppresed enough to turn down the volume of his bodily movements that he can focus a lot better. It’s the jumbled Alphabet Soup of autism that we need to discuss here, and not every autistic person possesses the same level of tics & movement disturbance (read a couple of posts down from this one), which Carly and Adam seem to share to some extent.

Adam is not able to talk all of the time. It’s in part motor planning, “apraxia” and his neurology that effects his consistency. These “neurological inconsistencies” or “inconcistency in performance” are, for many autistic people, a real struggle. I am often told that Adam is a “complex” child because of it — that he’s “intelligent but inconisistent because he cannot always focus and always needs to move.” Teachers generally want to put him on meds. I am for medications if they assist the person in their own pain or distress. I’m concerned about using them only for “compliance.” Educators largely focus on an autistic student’s inability to sit still rather than what captures the ability — what engages the autistic child.

Sometimes Adam can say a perfectly clear sentence and make perfect sense, other times he mumbles like we all tend to do when we don’t know the words to a song. I can tell he’s trying very hard to form the words and it overjoys me. Other times he babbles and I can’t make out what he is saying. I’m frustrated with myself when he’s intentionally asking me for something because I can’t quite understand him and he’s looking right at me! I still try to acknowledge his utterances no matter what.

Some parents get really frustrated with the “babbling,” but I’ve learned it’s an important part of language aquisition — talking to oneself, self-babble. I would say don’t ever try to stop it. Even “shaping” it all the time can get very discouraging for the autistic person. While we can model, we don’t always want to be correcting a person. Sometimes I’ll just acknowledge like “oh” or “yes” or “I know what you mean.” I like to always remember that Adam is on a different trajectory than other kids. As I recollect our first decade now together, I relish in the fact that we have little chats, although idiosyncratic, in the car. Some people might view this still as extremely “impaired” communication between us. Yet, when Adam was a toddler, I had wondered if we’d ever have a chat in the car on the way home from school. There was always silence, and I wondered if all I would ever hear was my own voice.

This morning, he was reading to me! “Clink” he read from his book Spoon He can some days and not on others. The past couple of nights, he’s been picking up “age-appropriate” books, although he’ll also need his “baby books” for security and comfort. His recent favorite is Geronimo Stilton’s The Kingdom of Fantasy. I bought it because the chapters are short and the illustrations are great. He read the words effortlessly last night, while other days he struggles to get the words out of his mouth. He will stare at the word and utter nothing, or go to, what I call his “default word”; one which looks similar but is not the same, often triggered by the first two or three letters. I figure he’s trying to access it and because he can’t get it out quickly enough to appease me, he will say what first word comes to his mind. Often, it may take up to minutes for an autstic person to process what is being asked of them and then they will answer. Inconsistent.

These inconsistencies are really important to remember with some of the non verbal autistic children, many who have motor planning difficulty. It is one of the points also which many families do not understand about Facilitated Communication, or what is now called “Supported Typing” — what it is and why it exists. There was so much controversey about this effective and important way of teaching children with motor planning difficulties and low muscle tone that the term had to be changed. It had been abused by some therapists, but we’ve learned ways in which to avoid this abuse.

When we’re talking about getting devices into the hands of autistic children, I’m delighted. I’ve been advocating for that for nearly a decade now. The recently released book, Carly’s Voice will put more of these devices into the hands of autistic children. Carly has a strong voice and she can add to the other autistic individuals like her who use typing as their main form of communication — Amanda Baggs, Larry Bissonnette, Tito Mukhopadhyay to name only three of many. Every time another autistic person “comes out” I continue to have hope that our understanding of autistic people, and the education and the services they require, will be more available to them. I believe that the more educators are interested in teaching the autistic, the better education autistic people we will have. Educators have to believe in autistic people first, and I think Carly can help with this.

The one point I wish to extend about typing and using devices that wasn’t addressed in Carly’s Voice, is the critical role of the communication partner — particularly in the difficult beginning of learning how to use devices or in learning to type, which not all people with motor planning difficulties may be able to achieve. In the book, her dad, Arthur Fleischmann states that Carly could not initally type with her parents. When Carly was nestled in between her therapists Howard and Barb, she could type some of the time. Her father admits that he thought it “incredulous” when her therapists claim of her typing ability and intelligence.

Having close proximity to a communication partner is “Supported Typing.” It’s a form of prompt, security and trust, and it must be used in order to get many autistic people started. I know from Adam that typing open-ended conversations can be really hard for him. He may require reinforcers or some sort of assistance to keep going. He can type independently for things, now even some phrases, but when we have an open-ended conversation, he still needs me to sit closely. Learning how and when to push an autistic child to type is dependent on many factors that need to be carefully evaluated.

He is independent, some of the time, when motivated and when he knows what to do. He would not have started typing independently had I not began supported typing when he was four years old. When alone with YouTube, Adam can search for very sophisticated videos he wants like “psychedelic cartoons.” I don’t need to be there — his fingers can move as fast as lightening. He also spells on his own on his iPad spelling programs that he likes to play around with. Put him in an ABA program where he’s asked to type the same word that he’s known since he’s been 11 months of age, however, (he was also diagnosed hyperlexic), he may not type the “correct response” one hundred per cent of the time because, I imagine, he’s so bored and he can’t always do what is commanded of him. Or for the reasons cited above, he’s inconsistent. He’s consistent, however, in many other things, like his need for movement, deep pressure, his way of learning, and, well, being autistic, which is generally undervalued.

This is what I don’t like about ABA programs and why I think it holds the autistic child back in the area of academics, especially. I keep telling his school they need to move on — if he’s interested in YouTube or the computer, let him search and build his research and typing skills from there. ABA supervisors and therapists desperately need to learn the value of other methodologies such as supported typing and following an autistic person’s interests, not to mention truly understanding the need of certain physical movements in order to achieve comfort and to learn. Learning happens all the time, even for autistic people whom we tend to believe are not learning unless they are responding typically and “attending.” I struggle with the marrying of “learning how to respond typically,” and Adam’s innate ability, I’ll admit.

One strategy also that ABA’ers need to learn is not only to see what an autistic person is doing on their own “consistently,” even if it appears “atypical” but also to let them respond by giving them visual multiple choice since most autistic people are visual learners. Adam will usually score 90-100 percent on this method of testing knowledge. If asked to respond without the visual prompt, he’d be in a low percentile. Still, he’s judged on a typical scale instead of an autistic one most of the time. Visual support is critical to autistic learning and responding and should be used in any communication program.

When looking at Carly as a young child, because of her motor-planning difficulty, it is clear that she learns to press the buttons on her Cheap Talk machine (this is a machine loaded with PECS with a voice recording so the box is an early ‘talk box’ for very young children). Her index finger is held by the therapist and formed into a point. Her dad writes about her low muscle tone, so Carly would have needed this level of support. She is also lead to the box, which is an example of how many autistic children need to learn the purpose of these communication devices. We must not simply hand an autstic child a device and expect them to type miraculously. Watch for it in the shots where she is a little girl:

Some people don’t have the full motor capability and others are effected by movement disturbance — a form of catatonia in autism, or spasmodic-like movement — where they need a reminder to keep moving. This can be as subtle as a command to “keep going,” or a light touch on the shoulder. For more assistance, a backward pressure, or resistance, can be applied on the arm. It can servce as a physical reminder to keep moving the hand forward. If done correctly, the supporter will neutralize the users hand in the centre of the keyboard to ensure that there is no influence over the communication itself.

It is important not to acknowledge the hard work of many of autistic non verbal individuals, and their therapists, who learned to type and communicate this way. So many are independent now because of it, but just because some people cannot be fully independent is not to assume, as Carly says so well, that there is no intelligence. Carly also tells us that she worked very hard. It’s not easy for an autistic person to learn how to type, nor is it for parents and therapists. I know it’s not easy for Adam.

As a visual learner, Adam uses the program Pictello on his iPad for him to practice open-ended communication. What this means is communication without a specific ending that he would come easy for us, like conversation. Adam is able to take his own pictures, or we can of him, on his own device, he can load them into Pictello, and he can write independently about each picture, and we can have a conversation about his pictures. Due to his inconsistent capability of speech, we ask him to read the sentences he writes so we can record his own voice with the program. Afterwards, he’s created a story of his day and he can listen to himself narrate. His so delighted with it that he’s eager to use it everyday. He loves to hear his own voice and I can hear how he’s trying so hard!

Before the iPad we used the Alphasmart Neo because it was portable, but it didn’t have the text to speech output that has helped Adam also learn to talk. Now with the iPad, we have so many inexpensive options to communicate. I know the iPad isn’t accessible to all autistic families, and Autcom is also working in the US to get subsidy for families for the iPad. I hope Carly’s Voice and the many other autistic voices will continue to raise this awareness so that educators will be also eager to learn how autistic people can learn and communicate. Sometimes it takes such highly publicized success stories to get our educators even interested in our autistic kids. I am grateful that Arthur talks honestly about his own struggles as a parent, and still never giving up on Carly.

Let us all be patient and believe. The onus is not solely on the autistic person. We cannot expect them to know what to do with the device — it’s not easy to learn. It may take years. From my experience, and judging from Carly’s Voice, it’s well worth it.

Some References for Assistive Augmentative Communication and Supported Typing:

Pat Mirenda and Teresa Iacono, Autism Spectrum Disorders and AAC

Martha Leary, David Hill and Dr. Anne Donnellan, Movement Disturbance in Autism

Rosemary Crossley, Speechless, Facilitating Communication for People Without Voices

Syracuse University School of Education

Dr. Pat Mirenda on AAC

Dr. Douglas Biklen: Contested Words, Contested Science

Ralph James Savarese: Reasonable People: A Memoir Of Autism And Adoption (reviewed in Disability Studies Quarterly)

Conferences & Orgs for and by Autistic People And Where You Can Learn More About Autistic Learning Communication:

Autcom

Autreat

ASAN — Autistic Self Advocacy Network

Films to Watch on AAC and Supported Communication:

Sue Rubin: Autism is A World

Wretches and Jabberers

Tito Mukhopadhyay on 60 Minutes

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About Me


ESTÉE KLAR

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 (www.taaproject.com), 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.