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WITH THE LIGHT (Vol. 1): RAISING AN AUTISTIC CHILD
By Keiko Tobe
Hachette Book Group, September 2007
(Vol. 2 to be published March 2008)
Review copy received at NCTE


This is an amazing book.

520+ pages of native manga (a graphic novel read right to left), originally published in Japan, this is the story of a young fictional Japanese couple whose first child is autistic.

Masato, the father, is a workaholic whose hope for his new son, Hikaru, is that he will “move up the corporate ladder like the shining sun.” Sachiko, the mother, tries hard to be the perfect wife and mother, but increasingly, she realizes that Hikaru is not like other babies.

Sachiko deals with in-laws and friends who assume she is not a good mother, doctors who misdiagnose Hikaru with deafness, anger at a child who will not respond to her, and frustration and despair when it seems her marriage will fall apart because of Hikaru.

As Sachiko learns about autism and about how to care for and find appropriate schooling for Hikaru, she also finds supportive professionals and true friends. She and Masato rescue their marriage and learn to work together to help Hikaru grow in his own way toward the goal that he will grow up to become a “cheerful, working adult.”

The book is full of information about autism, accurate portrayals of positive and negative reactions toward autistic children and their parents, and examples of the kinds of accommodations that often help autistic children to succeed in a mainstream classroom. Because it is in the format of a graphic novel, the story feels very immediate and real. You identify with Sachiko and understand the range of emotions she goes through as she grows as a parent through her stuggles to love and care for Hikaru.

A campaign to raise parental awareness about childhood psychiatric disorders is using ransom notes.

Because parents of children diagnosed with these issues aren't scared enough already, or doing their best already.

My child is not a disorder and he is not a prisoner.

How about raising awareness by helping people with undiagnosed children recognize the signs? Not to mention the doctors who fail to notice or to believe parents reporting the early warning signs? (Yes, pediatrician who told me autism was fashionable, I do mean you.)

Guess I'll stick with the plan and list five for Friday, although not much has been going on.

1.The weather is finally 'cool' in Florida...down in the forties last night, and only into the sixties today. Very nice for outside activities during the day. I know that is nothing like much of the rest of the country has, but for me, who is cold if it goes below 80, it is cold enough.

2. I have scrapped several chapters of my WIP and am rewriting a whole section of the book. I think it is going well, and will test it out on my crit group in a few days.

3. I have been enjoying the Robert's Snow Cure for Cancer artist interviews on several websites. Check out the artists' snowflakes for the upcoming auction.

4. Plans for the Space Coast Writers' Guild annual Pen-to-Print V conference are progressing nicely. This week I have been following up with the agents, editors and authors who will be presenting to take care of any final details. I have enjoyed setting the conference up with so many great presenters.

5. I started my Christmas shopping today by ordering a magazine subscription for my grandson with autism. He really loves non-fiction, so the Kids Discover magazine seemed like the perfect gift for a kid who doesn't really like or use many things. Am hoping I can find a good magazine for my 12-year old grandson, too. Any suggestions?

Having enjoyed books with autistic children at school over the years, I thought this article, "Autism group probes why children love Thomas the Tank Engine," was extremely interesting:

Among autistic children, who often have a narrow range of behaviours, Thomas-related play was often their favourite activity, with children repeatedly watching the videos and reenacting whole scenes, including dialogue, with the toys.

"Thomas & Friends is 100 per cent responsible for getting him talking. Thomas was his life," said one parent of a nine-year-old, according to the NAS survey.

(Much though I like this book, after a particularly rough weekend, I find myself inevitably writing parodies: "I am Fiercely Freaky when Frustrated" and "I am Never invited Near by the Normal Neighbor kids.")




I Am Utterly Unique by Elaine Marie Larson. Illustrated by Vivian Strand. Autism Asperger Publishing, 2006 (1-931282-89-7)

I'm usually annoyed by books that attempt to sum up personality traits associated with autism, but this book, designed to "celebrate the strengths of children with Asperger Syndrome and High-Functioning Autism," does it with so much affection and care, I have to like it. Using an alphabet format--in itself an excellent choice for ASD kids, many of whom are extremely attracted to letters and numbers--the book lists 26 positive traits often found in HFA children, from "I am an Animal lover" to the unfortunate Z cop-out "I love piZZa and puZZles." (An engaging illustration of a jigsaw pizza helps redeem this one.) In addition to generally positive traits like "I am a Happy Helper," the book pinpoints some of the more fascinating aspects of the typical HFA brain, like "I am a Detail Detective," "I have Fantastic Focus," "I have a Vivid Vocabulary" and "I have an XXL (eXtra, eXtra large memory.)" Some of these concepts must have been a challenge for the illustrator, who rose well to the occasion, depicting simple, almost stick-figure kids expressing the ideas through one often goofy detail: "I have an original outlook" shows a brightly smiling child wearing psychedelic rainbow striped sunglasses. Many of the kids illustrated throughout the book are shown again on the page for U, "I am Utterly Unique," a reminder that though all of them have HFA, they are all unique beings. And of course, not every child with HFA will find him or herself in every one of these pages, which can be a good start to some conversation about similarities and differences, even in people with the same diagnosis.

In addition to the enormous benefit of showing HFA kids a too rare, positive vision of themselves in a book, I Am Utterly Unique has value for showing that the stereotypes of these children are often quite off base: "I have enormous enthusiasm," for example, is certainly true of my own autistic son, and not something I would ever have expected before becoming his mom. This is overall a terrific book for sharing with a young child with HFA or Asperger Syndrome, or with siblings or classmates who could use more insight into what HFA is like. (3-9)

Have been working on the marketing over the last few days, sending emails with my press release to a number of Autism Societies across the country, and generating an address labels page for others. It's amazing how many there are; I am up to only page six of more than twenty pages in a google search. I figure if I do ten a day, I might finish in a month or two.

The good thing is that I have had a few responses, too, and have sent out a few books for review.

In addition, I have joined some listserves and introduced myself, which has generated a good deal of traffic on my website.

And from one of the listserves, I received the inspiration to write an article about grandparenting a child with autism, in response to a question asked about how to do that. So I have started working on that.

Then, I was reading my new SCBWI Bulletin yesterday, and found a publisher looking for books with the same criteria as the first one I wrote, which does not yet have a home...so of course, I sat right down and submitted it.

The weather here is warm, windy and wet. Barry is passing through...don't know the name of the first storm...I seemed to have missed that one. But the rain is what we need, so welcome, Barry.

I've ordered two books about autism for my son: Different Like Me: My Book of Autism Heroes and I Am Utterly Unique. Looking at the cover of Different Like Me brings up something I often wonder about--why do small press books so often have such crummy illustrations? I know they don't have a lot to spend, but damn, there are so many decent artists out there not making any money either!

Of course, with small niche markets, you have to wonder if they get away with being so ugly just because they can.

But truly, it is unfair to judge a book by its cover. Both books were very positively reviewed by parents of ASD kids, so I will hope for the best.

So for the last few days, I have been looking at newspapers and trying to develop a list of places to send the press release my publisher sent. Problem is, I can find plenty of places, but it takes SOOO long, because I always find something I just HAVE to read on each page... I'm getting there, though. Have sent out a few by email where there was no addresses, and have started a labels sheet for other addresses.

And while I was doing that, I decided to check the contents of my marketing folder and came across Marti Leimbach's website and blog...she wrote Daniel Isn't Talking about her experience of discovering her son had autism and all that went with it. I enjoyed reading her blog, including a post about the difficulty of attending church when one has a child with autism. Sounds familiar...have heard similar stories from my daughter-in-law and son, too. It is a difficult thing to do. In fact, one minister told my son he and his family were an inspiration to other parishioners...because of all they have to go through to attend church with M. (Must say it is not as difficult as it used to be, now that he is getting older.) Anyway, it was interesting reading.

Hope you all had a good holiday!

Here's an area that needs work: books for kids with autism -- NOT for siblings of kids with autism. And books about more than one kind of autism. Okay, to be blunt, books for my five year old son, who has Figured It Out. I suppose once he could read, it was kind of inevitable. For all I know, he reads this blog.

Moving right along here...grandkids were in school all day, so had time to spend on the computer. I've already gone through my KNOWING JOSEPH MS once and made some corrections...nothing major--mostly commas and such. Then I decided I should go through it again, so that is what I am working on now.

It's amazing on how easy it is to miss something when reading the same thing for the umteenth time. This time I found a missing period at the end of a sentence. I wonder how many times I have proof-read that MS and missed it. Have found many more things the second time, too. Whenever I am reading a book, I tend to find one or two errors in it, and wonder how people can publish books with such obvious errors...now I know.

Of course, there are whole sections of the book I would like to change/improve, but I guess we are beyond that now. I wonder...when we write, are we EVER finished with revisions?

Everything else is going along relatively smoothly...it was an 'at home' day today because we were waiting for the movers to come and get some of the stuff that needs to be shipped to Germany first (my son is in the military), and then shopping for birthday cake and a few other incidentals for Matthew's birthday, then off to Karate for Jay and Speech for Matthew. Only a couple of meltdowns, which we all survived.

Tomorrow is a golf day again...and hopefully the end of the editing for the second time.

An exceptionally rude person corrects me: toys r us has given money to Autism Speaks. However, the promotions I spoke of are only about donating at the register. Which still leaves my basic point: those posters are offensive to many people with autism and those who love them.

Toys R Us has all these "autism - solve the puzzle!" posters up, soliciting funds for an organization called autism speaks. (They're not even donating, mind you... they're just asking for more of our money.

I'm not familiar with this organization, but I have heard autism speak any number of times, and one of the things it says most often is, "I'm not a puzzle. I'm a person."

An attitude harder to maintain when you walk into a stores and see those posters.

Time, that is, for MotherReader's 2nd Annual 48 Hour Book Challenge! This was a revealing and exhausting experience last year and I look forward to facing the challenge again.

(Though I'm not doing that well with personal challenges right now... I can only offer the excuse that living with someone with autism is challenging enough on its own. No, it's not all hugs and kisses and reading "little house" books; it's also IEP meetings and therapy appointments and the constant stress of being around someone with no off button and very poor volume control.)

Autism confounds researchers but one way of understanding it is to look through the lens of stress and coping. That is exactly what editors M. Grace Baron, June Groden, Gerald Groden and Lewis P. Lipsitt do in their book Stress and Coping in Autism. Contributions by researchers, clinicians, teachers, and persons living with autism illustrate how it is possible to reduce the impact of stress in autism by understanding both the science and the experience of it. Below we excerpt part of the introduction. To learn more be sure to visit our morning post, Helping Children With Autism Learn.

The construct of stress has expanded our understanding of both typical and atypical human development in a revolutionary way. Research into a number of disorders that are often comorbid with a diagnosis of autism, such as anxiety, shyness, phobias, obsessive-compulsive disorder (OCD), and thought disorder, already include a systematic theoretical and applied analysis of the contribution of stress to the disorder. Autism, in its own right, might also benefit from such a focus for a number of reasons.

Anxiety, an indicator that someone is experiencing stress, was associated with autism as early as Kanner’s (1943) first description of the syndrome. A few early clinical and research reports (e.g., Marks, 1987; Matson & Love, 1990) examined the correlation between fear and anxiety and autism. In 1994, Groden, Cautela, Prince, and Berryman presented the first systematic framework for using the concepts of stress and anxiety to describe and treat autism and proposed that those with autism may, in fact, have a special vulnerability to stress. We now have a better understanding that the clinical problems often associated with stress, such as anxiety, are more prevalent among people with pervasive developmental disabilities than in the general population.

Autism has long been seen as a problem of faulty or different arousal responses to environmental intrusions (Dawson & Levy, 1989). This has given rise to continued speculation about the role of such patterns of arousal as diagnostic markers or even indicators or subtypes of autism. As early as 1979, Piggott’s review of selected basic research in autism suggested that, “Children called autistic probably represent a complex of clinically similar manifestations in a variety of difference physiological disturbance[s]. Objective markers are needed as to allow the demarcation of subgroups of autistic children for further study” (p. 199). More recently, Tordjman, Spitz, Corinne, Carlier, and Roubertoux (1998) offered a stress-based model of autism, integrating biological and behavioral profiles of individuals wish ASD. They propose that stress and anxiety may be core problems of autism and that an analysis of differential responses to stress can lead to the identification of different subtypes. Similarly, Porges’s The Listening Project (2002) documents hyperarousal and vagal disruptions in children with autism and offers a biologically based behavioral intervention designed to stimulate the social behavior of children with autism.

Some of the known biological or behavioral effects of stress (see McEwen, 2002; Sapolsku, 1998) can be seen in persons with autism. For example, there is recent evidence (Krause, He, Gershwin, & Shoenfeld, 2002) of suppressed immune system function in some persons with autism. Under- or oversentivity to pain is a hallmark behavioral symptom for many with autism, and turbulent sensory and perceptual experiences are documented regularly in first-hand reports (e.g., Jones, Quigney, & Huws, 2003). Fur

April is National Autism Awareness Month and the OUPblog would like to raise awareness by sharing excerpts from two different, but equally useful books. Helping Children With Autism Learn: Treatment Approaches for Parents and Professionals, by Bryna Siegel, is a practical guide to treating the learning differences associated with Autism. Siegel, the Director of the Autism Clinic at Langley Porter Psychiatric Institute, gives practical guidance for fashioning a unique program for each child’s problem, effectively empowering families. In the excerpt below Siegel explains how to help verbal children use their words. Be sure to check back later today for an excerpt from Stress and Coping in Autism.

If He Understands, Why Won’t He Answer?

Autistic children need a reason to answer. “Just because I asked” is usually not a good enough reason, as that would be a more purely social reason. The probability that a child with autism will answer, or appear to comprehend or comply increases as the “instrumental press” increases. This means if the child can see that there are clearly desirable consequences to answering, and he knows how to answer, he will respond. Just as is the case when using visually based communication, it is necessary to create a situation in which the child wants to answer, or wants to ask a question because in his mind, it will get him something he wants or wants to know.

Upping the Communicative “Press.”

When the child really wants something, it is a good opportunity to increase your communication demands just a bit. If the child has just seen you open a bag of Cheetos, and he said, “Cheetos” while approaching your bag with what looks like an intention to grab the bag, this is a good time to tighten your grip on the bag and say, “Kevin, do you want Cheetos?” If Kevin replies, “Cheetos!” prompt him by touching his chest lightly with your forefinger (I’m assuming Kevin is almost on top of you by now) and saying “I want Cheetos.” If he says, “I want Cheetos,” thank him for asking, and give him a few Cheetos. I prefer “Thank you for asking!” to “Good saying ‘I want Cheetos!’” since the latter is not a grammatical sentence and can only serve to confound any emerging sense of grammatical rules. Adult responses that result in the child’s possibly echoing grammatical formulations that are not correct fails to provide available opportunity to rehearse meaning.

Depending on how many Cheetos you have, and how much Kevin likes them, this could be a good time to practice related conversational gambits like “I want more Cheetos,” and “Mom, I want more Cheetos, please.” Take advantage of the tendency to echo by developing a way of prompting an echo like touching his chest, (or cheek or lips, or touching your own lips then pointing to the child’s mouth). The prompt should model appropriate speech with just a bit more elaboration of the statement the child has generated on his own.

A common error in prompting speech revisions, however, is to take the conversation lesson too far. If the adult starts to prompt the child to “say it better,” add “please” and use a proper noun to address the person with the Cheetos, and keeps withholding the Cheetos until all these additional demands are met, it is no longer a conversation or even a conversational lesson, but just too-hard a lesson. The child is likely to give up and just walk away. The chance to prove the idea that spontaneous requesting is useful is lost. The child will have learned nothing about rules of language pragmatics, which is that you clarify an utterance only until the listener understands. It is also a key teaching opportunity in these kinds of situations for the adult to add real, natural conversational responses, like the “Kevin, do you want Cheetos?” response to an initially nonverbal communicative initiative on the child’s part (trying to grab the bag). This exposes the child to natural language models at a time when his receptivity to what is being said will be high—because he wants something.

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Oh, I have a lot to talk about, I don't even know where to begin. It's like when you're writing a paper and you just become paralyzed with the enormity of the task before you and freeze up and never get started.

So... let's talk about some books, eh? I guess I'll focus on award winners and those with buzz. We'll see how far I get tonight!

Television, the internet, video and blogs are big parts of today’s pop culture. However, when Sophie B. created Pop Goes the Library she put on the masthead the subtitle, “Using Pop Culture to Make Libraries Better.” This got me thinking about the ways pop culture can not only make libraries better, but also life better. Today I got an answer. While I was watching television and aimlessly channel surfing I came upon “The View” on ABC featuring popular singer Toni Braxton describing her experiences as the mother of a 3-1/2 year old son with autism. The show also interviewed medical experts on autism and families and individuals living with autism. The statistics are mind-boggling. Today 1 out of every 166 children in the United States is born with autism. After the show, I logged onto a terrific blog called “On the Spectrum” which is a clearinghouse of information on Autism Spectrum Disorders (ASD) run by Chris, a brilliant librarian who is also the mother of a child “on the spectrum.” Chris’s most recent post, "Learning Social Skills by Watching" discusses how research at Indiana University shows that using video may help children and teens with autism. Therefore, I nominate Chris as today’s Pop Princess. Eat your hearts out Jessica Simpson, Hilary Duff and Miley Cyrus!