Saturday, December 06, 2008

Books About Aspergers and Corresponding Disorders

In response to my last post, Wrong Shoes asked respectfully for a list of the books I've been reading to get up to speed on The Kid's fairly new diagnosis of Aspergers. So, here's a list of resources, some new to me, some long-ago dogeared, that I find to be helpful in teaching me all that I can learn about how perhaps I can tap in to The Kid's brain, and more effectively build a home and school program to help him succeed...

  • The Complete Guide to Asperger's Syndrome by Tony Attwood. This book is the textbook on textbook Aspergers. Lots of info, lots of what to look for, not so much, in my opinion, on what to do. Finding WHAT TO DO is the hardest thing, I think.
  • Kids in the Syndrome Mix by Kutscher, Wolff and Attwood. Hits it right on, that there is this type of kid that bounces from ADHD to Bipolar to Tourettes to LD to Aspergers. The Kid is definitely 'in the mix.' Unfortunately, once you've read Attwood's Asperger's tome, the Papolos's Bipolar "bible", and then Russell Barkley's ADHD books like I have, you've essentially already read this book. I suggest this book for TEACHERS, and for parents new to a diagnosis, or have a child entering school and special ed without a diagnosis, but with a strong sense that their child will be diagnosed with ADHD and the like.
  • Seeing Through New Eyes by Melvin Kaplan. I keep putting this book down before I can get very far. It is about Behavioral Optometry, which is a method of helping The Kid that I am very seriously considering. He was evaluated by a Behavioral OD this fall, and it was clear that The Kid had difficulty tracking an object with his eyes across a field of vision (his eyes jumped, intermittently, rather than smoothly following the object, something which developmentally he should be able to do by 8 years old), and cannot discern depth perception with great accuracy. The conceit of this kind of therapy is that if you repair the ability to see, you will clear up a number of the sensory and attentional difficulties that manifest from problems created by these vision impairments. These are not vision impairments normally caught by your everyday eye doctor, and of course the therapy and the exams are not covered by insurance. I am not a fan of this particular book, although I'm interested in following this course of therapy, because it promises a complete cure to autism, aspergers, ADHD, learning disabilities, etc. That annoys me. I don't get my hopes up anymore.
  • The Out of Sync Child and The Out of Sync Child Has Fun by Carol Kranowitz. The basics on Sensory Integration Dysfunction. The Kid has numerous sensory issues, which I've written about before. Clothes have to be just so, with no tags or fabrics that he might find disturbing. Jeans are out, as are any pants with buttons. Loud, open, cacophonous rooms or venues make him either explode outward or escape inward, either way, unreachable. I could go on and on. I didn't find the former especially helpful for a plan of action, but the latter has lots of fun, sensory-friendly activities and games. We are, and have been, on the waitlist for weekly occupational therapy for months now, and now that we're at this stage, I find it hard to believe that I've waited this long to take this plunge into intensive OT. To any trained eye, it should have been the first thing we did when he was in preschool. Bygones.
  • Saving the best for last, of course. Thinking About Me, Thinking About You by Michelle Garcia Winner. Big fan. I'm a BIG fan of Ms. Winner. Her methods don't work for all kids on the Autism Spectrum, but her brand of teaching social convention is right up my kiddo's alley. I have been pleading for his school to use the Superflex program with him in his 1:1 therapy time, but they haven't done so even though they own the program, mostly in favor of allowing him to perseverate on paper airplanes and the like. Grrr. At any rate, the basic tennet of the Social Thinking programs is that social convention, like everything else we aim to teach children with ASD's, can be broken down and taught. You can be taught that other people are thinking about you as you are acting. You can be taught that other people think differently than you and may or may not expect you to act in certain ways at certain times. You can be taught that there are appropriate situations for certain behaviors, and situations where certain behaviors are never appropriate. Big fan. Huge.

So, to this I add two items, fiction or memoir.

  • I Love You To Pieces. A totally heartbreakingly wonderful book of short stories written by parents of special needs children, organized along a timeline of birth to adulthood, representing the various concerns that come along with each milestone and age in both the lives of the children and parents. Some of the authors' children have autism, some cerebral palsy, some more rare disabilities I'd never heard of before. If you are a parent of a child with special needs, this is inspiring, touching, real. If you have a friend who has a child with special needs and you want to know what the spectrum of emotion they may go through, this book will give you a fairly good idea.
  • Hurry Down Sunshine. I'm not done yet, and technically this book is about schizophrenia, but it's also about a dad and his daughter. I have promised the publisher I'd write a full post about the book once I get it done, so expect that sometime next week.

Now, I know I'm missing many many books here. Most notably, I want to read more books from the perspective of adult aspies, like Look Me in the Eye and some of Jonathan Mooney's books. Any other suggestions?


wrongshoes said...

Thanks so much for the list. I'll add them to my wishlist. (I already have The Complete Guide and The Out of Sync Child).

I thought I'd pass along this website that I found today. I thought it was more detailed than many.

What's so hard for me is that I don't really know what's "normal," and I often wonder if my own deficits are the reason parenting is so difficult. Maybe that's where experts could help us.

I really enjoyed Look Me in the Eye, and have heard The Curious Incident of the Dog in the Night-Time by Mark Haddon is good (though I haven't read it). There are lots of good Aspie bloggers (some of which are in my blogroll). I self-diagnosed Asperger's a while back but have since been unsure. I've decided to go without a label for a while.

Anyway, thanks again!

Mr Lady said...

Paper airplanes? More on that, please.

Stephany said...

Great book list, and I would add Temple Grandin to the list also.

Suzanne said...

When Gameboy was newly diagnosed, I picked up two copies of Tony Attwood's book and handed them out to family and teachers. Great text on what Asperger's IS.

Another book that I found very helpful is "The Explosive Child". The author's name escapes me (Robert Green?), but it was extremely helpful in minimizing the meltdowns.

molly_g said...

Thanks Suzanne. I can't believe I forgot to put The Explosive Child on this list. The author is Ross Greene. It is a great book. I love how it prioritizes behaviors, which is something you definitely learn to do with a kid with Aspergers, or any kid with just really explosive behaviors. It also teaches discipline with empathy, but at the same time puts the onus of 'good' behavior on the child through preventative problem solving...

caty said...

I'm glad you are back!

Riahli said...

glad I found your blog.

My husband and I took care of his little brother for 6 years. He had a lot of the same behaviors you talk about. I tried so hard to find ways to help him be as successful as possible. At first he had the diagnosis of ADHD, but I always felt like something wasn't quite right. They kept uping his dose of meds, and changing them and things just kept getting worse. Then in the last year that he was living with us, when his behavior had hit rock bottom and I had researched until I felt like my head would explode,and took him to way to many doctors, I finally found a doctor who I trusted, who felt like he had a misdiagnosis and that he actually had Aspergers. When I started researching this I totally agreed. I was unable to actually get him tested or anything though, because he moved back in with his mom. I feel so bad for putting him on the meds for ADHD, but I just didn't know any better, and I had to do something. His school was breathing down my neck.

Now I am in the process of adopting my nephew, and I am seeing behavior that makes me wonder if he might have aspergers too. I know there is something going on. I'm so worried about going through the whole process again of trying to make sure he gets the right diagnosis, and the right help from the very begaining.

I love the information on your blog, and I am going to read some of these books.

nonna said...

i don't really know a lot about aspergers, but i did meet somebody who has it. he was in my speech class in college and he gave a speech trying to explain aspergers to us. i don't know if going to college is the norm or the exception for ppl diagnosed w/this condition, but i thought it might help somebody who reads this feel better. he did a great job in the class and was a very nice boy (i say boy cuz i was ancient compared to the ages of everybody else in class). he communicated well with us, and was open about his life when i talked to him after class. i think, if he hadn't told us about aspergers, that we would never have known he had it.

Peggy said...

Yub Yoo. Glad you're back.

Liz Ditz said...

Ross Green has a website
and a new book about school discipline

"Lost at School" Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them

# ISBN-10: 1416572260
# ISBN-13: 978-1416572268

Here's a review from an Amazon customer

If you are a real teacher (or principal or dean) in a real school, this humane and engaging book will surprise you with its combination of practicality and idealism. It will inspire you to change things and to believe in the possibility of change.

After teaching for eight years, I have spent the last three as "the discipline guy", Dean of Students, in a small, rural middle school. As both teacher and now as dean I have developed a deep suspicion of a certain sort of books. You know the ones: written by theoreticians or one-on-one therapists who have never had to juggle a roomful of 25 actual young human beings with not enough time, not enough resources and far too much of paperwork, testing, and ringing bells; and more and more deeply-troubled youngsters. These are the books that anxious or angry and frustrated parents bring to meetings that tell them how you should be meeting the needs of their unsuccessful or disruptive child. These books make things far worse for everyone involved.

"Lost at School" is different; and that's clear from the beginning. After a brief introduction which pulls no punches in saying "school discipline is broken" the book launches into a story! Every teacher I know likes a good story - and this one feels so much like real (school)-life from the beginning that it sets the hook for the rest of the book. The different thing about this story is not the characterization of the troubled and challenging kids, but of its inclusion of the realistic range of adult personalities that combine to make education what it is - and sometimes isn't. The book sets out to follow the path of a handful of youngsters and another handful of fictional teachers and administrators who are struggling with the limitations of their own range of personalities and world-views as well as the real constraints of what schools can and cannot do. It is quite eye-opening and, in my opinion, dead-on accurate.

Now don't let me give the impression that this book is just another entertaining "Up the Down Staircase" or "Room 222" or even merely another inspirational "Stand and Deliver". "Lost at School" is ultimately focused on a suite of methods for understanding children who exhibit challenging behaviors in school and for working with them to help them change. The "storyline" serves as an opportunity to view those methods in action as used by some fictionalized but well-drawn characters.

The core assumptions of Greene's approach are that behaviorally challenging youngsters (a) "know how we want them to behave" and (b) "want to behave the right way". They don't need us to keep depriving them of privileges or offering them rewards to learn these two bits.

The basic premise of the book is that these youngsters lack specific thinking skills which make it difficult or impossible for them to behave in circumstances that come up too-frequently in their school lives. Much as education has come-around in the past 20 years to acknowledge that cognitive deficits, learning disabilities, must be acknowledged as part of a youngster's learning of reading or mathematics, we need to move to a similar approach with behavioral difficulties.

The goal, then, for educators, parents and the students, is to identify these missing or lagging cognitive skills and help students develop them - as central parts of their education. Greene provides an inventory which will remind educators of the sorts of rubrics we use frequently, for instance, in assessing students for attention or hyperactivity disorders. Some of these skills may well have come up in your conversations about a difficult student, e.g. "difficulty handling transitions". Some of them have probably been parts of conversations about students without the notion that they ought to be taught, e.g. "difficulty considering likely outcomes or consequences of actions". And some of them might just not have occurred to you as loci of behavioral challenges, e.g. "difficulty taking into account situational factors that would suggest the need to adjust a plan of action". Rarely, though, have you or I managed to systematically think about what to do with these anecdotal observations.

Having worked through the assessment of lagging skills, the next task is to "teach" these skills. In this regard Greene shifts gears and does not provide a "curriculum". Instead he provides an approach - a way of communicating with behaviorally challenging youngsters that he terms "Collaborative Problem Solving" or CPS. Some might find this unsatisfying. I did, at first; hoping for a "methods" approach to teaching this as any other group of skills. But I found Greene's system ultimately satisfying and revealing instead. He gives us CPS and weaves his ongoing story of sixth-grader Joey into its explication

The CPS approach is interesting because it sounds so simple. Greene calls it simply "Plan B"; distinguishing from "Plan A" - wherein the teacher or institution imposes its will on the student, and from "Plan C" in which we "drop an expectation completely, at least temporarily". I have to compliment Green on boldly sticking to such a simple naming scheme instead of coming up with typical ed-psych jargon to describe his schema or its alternatives. But the real power of such a simply-named approach is that describing it reveals how much we are all rooted in bouncing between poorly-implemented versions of plans A and C as part of school discipline. The "Plan B" or CPS approach assumes and requires listening to and the meaningful participation of the student -- and that is revealed to be a deeply-buried skill of even the well-intentioned educators in the storyline. But it can be learned and is the key to making things work.

Greene is very open to all the ways things can go awry in dealing with real kids in real school environments. He peppers the book with "Q&A" sections, and sample dialogues. But central to his acknowledgement of the "real world" is his fictional one! He weaves in, throughout, the ongoing tale of Joey and Mrs. Woods; of the Assistant Principal who got knocked in the jaw by Joey back in chapter one; of Joey's anguished mom and even of Mr. Armstrong, the "these kids just have to learn how to behave" guy, whom seems so familiar to any educator. This side-story becomes in many ways a central one as all of these people move through a year of struggle and transformation.

I won't tell you how it ends but will reassure you that it does end, as most school years to, not with a bang of disaster or triumph but with a deep breath and a look ahead as all the good but flawed folks involved anticipate the next year's labors. In this Greene manages to honor the motives and efforts of everyone who chooses to work in the often thankless business of education while he deftly reminds us of how much better we could and should be doing with these youngsters.