Friday, March 25, 2011

Reading for Answers

Sarah MacLeod

My younger son had a rocky start, with a changing set of labels. At two months, it was colic. At 12 months, he was a “fussy baby.” By four, hypontonicity, sensory processing disorder, convergence disorder, and possible PPD-NOS entered the scene. At six, a psychologist evaluated his cognitive skills and "profound giftedness" joined the party. At nine, he returned to the psychologist for treatment for anxiety and tantrums. Recently, at the end of three frustrating months, the psychologist added Asperger's syndrome to the list.

We -- his father and I -- had known for years that he was an unusual child. From the start, I scoured bookstores and libraries, searching for answers to or at least a name for what made my younger son so uncomfortable in the world. The answers had to be somewhere in print, I figured.

My bookshelf, computer, library card, and I knew -- or at least strongly suspected -- the Asperger's syndrome for several years before his official diagnosis. I knew then, and I know now, that there's no single book that will help my son with Asperger's syndrome relate with the world with ease and comfort, yet I search. I read websites, blogs, research papers, and books. Lots of books. Books from the library, PaperBackSwap, and my local book store. There are so many books out there on Autistic Spectrum Disorders (ASD), an umbrella term including Asperger's syndrome. Many are written for parents with children far more affected than my younger, but the number on high functioning autism and Asperger's syndrome is impressive, if not downright overwhelming. I'll not claim to have read of all those in the second, somewhat smaller category, but I will share what I've found to be helpful for me. Some I've owned for a number of years, long before my son's official diagnosis. The books I’ve acquired and borrowed chronicle his road to diagnosis, both the unofficial point I knew it was Asperger's and the official moment the psychologist saw what his father and I had known for years.

After exhausting the general baby/parenting section of books (by age 3, for my younger guy), I headed toward the special needs section. The Out of Sync Child, by Carol Krenowitz, one of the first books written on the sensory processing disorder for the layperson. Sensory processing disorder was new to me, and Krenowitz’s descriptions helped me make connections that led me to understand we were in for a different parenting and family experience than we’d bargained for, and, as I’d suspected, not simply a “fussy baby”. There was relief in the revelation that there were other kids like him, and Krenowitz’s book, as well as her follow-up, The Out-Of Sync-Child Has Fun, gave concrete guidance for helping my son become a bit more comfortable in his own skin. I've not looked back to the "Parenting Neurotypical Children" section first. (Okay, I've never seen it called that, but it seems to largely be written for parents with children who, well, aren't like mine.)

My first foray into ASD-specific literature was Deirdre Lovecky's Different Minds: Gifted Children with ADHD, Asperger Syndrome, and Other Learning Deficits. This weighty and well-footnoted tome explores the differences between gifted children with ADHD and ASD and their more typical academically wired counterpoints, while also exploring the variances between the gifted child without ADHD and ASD and those with. While more descriptive than prescriptive, Lovecky's book opened my eyes to the challenges that my kids faced. Each chapter does include some ideas for assisting these twice-exceptional, or 2e kids, as they're known on list serves and circles of families who have children with intellectual gifts and learning disabilities. I've returned to this book many times over the years, each time coming away with a kernel or so to chew on, often one that deepens my understanding of a trait one or the other of my boys exhibits.

I started reading The Complete Guide to Asperger's Syndrome by Tony Attwood a few years before my younger son's official diagnosis. Like Different Minds, Attwood's Guide is a lengthy read with 22 pages of references at the end. His exhaustive descriptions of the Asperger’s mind left me with little doubt that, despite the lack of definitive diagnosis, Asperger's syndrome was the best fit for my younger guy. Attwood offers plenty of resources for families of children with AS and a fair amount of advice while maintaining a positive tone about the diagnosis. Not a sappy, "Isn't your child's neurodiversity such a joy?' sort of pap, but a more matter-of-fact look at AS, treating it as difference requiring assistance for comfort in life, rather than disorder to be cured. I am science-oriented: the citations and research are robust enough to meet my tests of credibility.

My next purchase was Knowing Yourself, Knowing Others, by Barbara Cooper and Nancy Widdows. Subtitled, "A Workbook for Children with Asperger's Disorder, Nonverbal Learning Disorder, and Other Social-Skill Problems," I bought the book in hopes of sparking some self-and-other awareness for my then six-year-old (still with no diagnosis except possible PDD-NOS). We completed just a few of the 40 activities -- collages of faces depicting happy, angry, worried, and anxious were as far as we ventured. Looking back, I can see my son was a bit young and far too unaware of the feelings of himself or others to use the book. Paging through it again today, I can see it as a decent tool for developing social skills for my younger son who is now 9.

A few years later, I found Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns, by Brenda Smith Myles and Jack Southwick. To me, the highlight of this book is the description of the rage cycle along with suggestions for assisting kids during the rumbling, rage, and recovery stages. A light went on when reading through this short, focused book: my son's ever-increasing tantrums made more sense, and when NOT to talk to him became more important than WHAT to say to him just before, during, and after these rages. Myles and Southwick didn't make the rages go away, but at least I found some relief in knowing that my prior attempts hadn't worked simply because his wiring made my usual tantrum-coping techniques not only useless but often inflammatory. I wish I could say I manage to always refrain from trying to teach my son when he's rumbling, raging, or recovering (and for a few months, it seemed he was perpetually in one of these stages), but I remain human and overly wordy, even when silence would be a better road.

Fast forward to November 2010. The psychologist who IQ tested him at six and saw him a half dozen times for anxiety in Fall 2010, looked me in the eye after a session with my son and I and said, “He has Asperger’s syndrome.” I'm sure my relief was palpable as I nodded and grinned. Finally, we had a diagnosis. A day later, I was back to the bookstore. This time, my find was a picture book by Kathy Hoopmann: All Cats Have Asperger Syndrome. The day I told him of his diagnosis (which he found as a huge relief, too), I shared the book with him. He demanded a second reading, "to find all the parts that are like me." He then declared it his favorite book (previously held by the Lord of the Rings trilogy) and read it to any family and friends who stopped by. For my feline-crazy Asperger’s child, this book started a dialogue about his way of thinking that continues daily. Thank you, Kathy Hoopmann.

Our next read together was by Kenneth Hall: Aspergers Syndrome, the Universe and Everything. Written by a gifted homeschooling 10-year-old, I'd hoped this book would resonate with my guy. I certainly found similarities between my son and the young author. My son, however, focused on the ways he wasn't like Kenneth. He admitted to similar issues with authority and perfection, but, according to my son, so many details were different -- the author liked to spend time along in his room and loved math, and my son was afraid to be upstairs alone and really didn't care for math. But generalizing from specifics never was his strength, a commonality he shares with others on the autistic spectrum, so I hold no fault with the book on this count. While I found it interesting to hear about Asperger’s syndrome from the point of view of a child of similar age as my own, the book was a bit tedious to read, bearing an uncanny resemblance to talking with my AS son. Go figure.

The most recent addition to our ASD library is another do-together workbook for children with high functioning autism or Asperger’s: Asperger's ... What does it Mean to Me? by Catherine Faherty. Despite fine reviews, I was dubious that the large-print children's section written largely in the first person would appeal to my son, but he took to the format immediately. With no distracting illustrations, straight-forward yet not babyish language, and an uncannily realistic view of the "operating system" of the person with autism, this book became a favorite. We're opening the book a few days a week, looking back on the pages he previously liked and working together on a few new pages. Broken into twelve chapters, this workbook is both descriptive and prescriptive with plenty of room for readers to add their own notes about their experiences with autism. The book broadening understanding about self and others. I'm delighted to learn about my child's view of the world via our exploration of this workbook. Until the sensory section, I didn't know how much looking at rotating objects, patterns, and lights pleased him. Caught in the many smells, textures, and sounds he avoided, I missed what he liked. At the end of each child section is a chapter for adults (in somewhat smaller print) which expands on some of the workbook section ideas and offers concrete suggestions for caregivers.

Our shelves are filled with books of all genres, from ancient history to mystery, from fun with math to how to use a lathe. While some of these genres chronicle the special interests of my younger or learning jags of his older brother or me, our Autism Spectrum Disorder category is the one receiving the most new additions, bought and borrowed, at this point. None hold the answer to greater comfort for him in the world, but each has given me a bit more data, a few more ideas, for helping him toward that ever-shifting goal.