I recently listened to audiotapes of Dr. Mel Levine's books The Myth of Laziness and A Mind at a Time after hearing him speak. I think he's on to a much better way to help all kids learn, but I disagree with his blanket objection to labels. Some of these kids/people are so different that having a label separate them is very helpful in stretching our minds and help us break out of our expectations, and helpful to many of these people to understand that neurotypical society is something that may never make sense, but can be learned about. At the end of the day, all truth is beyond language.
Do read Dr. Levine's books. Especially pay attention to his expert testimony that (paraphrased liberally):
My son has Asperger Syndrome (AS), Sensory Integration Disorder (SI) and Obsessive Complusive Disorder (OCD). Apparently many AS kids have all 3. Often the OCD they have is different from the form of OCD that others have, but something like it frequently accompanies AS.
ALL of these terms are JUST terms to help us categorize certain characteristics. NONE of them have been linked to anything like a genetic difference (much less a virus), though there does seem to be a genetic component to learning and thinking strengths and styles. These words are guides to help you find the subject matter and for people to find each other. The differences even among self-proclaimed Aspies are at least as great as the differences among "us", and between "us" and "them." (There's even a theory that A.S. is some sort of collection of extreme set of male-thinking traits.)
There seems to be no link between AS and mercury. Perhaps mercury is bad for some kids whose bodies are more sensitive. My wife is allergic to nickel and felt better when her amalgam (silver, tin, copper and mercury) fillings were replaced with porcelain. Note that vaccines for kids stopped containing mercury (thimerosal) in 2001.
As a parent, and also as a worker in a high-tech company/valley, it's been valuable for me to understand what's different about what AS people do, what they perceive and think, and how they think. I'm more successful with him, and happier, being able to work in his world, rather than insist on dragging him into mine.
I'd recommend learning what AS people perceive and think and how they think, and then organizing that into a framework. The three books most valuable for this are listed first, below. Thinking in Pictures, and Songs of the Gorilla Nation provide excellent first-person accounts of AS to help you understand the depth and breadth of the differences experienced by these people. Asperger Syndrome and Psychotherapy: Understanding Asperger Perspectives then provides a framework for understanding issues.
For me, there were three difficult parts that the books don't adequately cover. First, why is my son so often stubborn and contrary? I've come to understand it as a learned reaction to
Central to his difference are completely different understandings and perceptions of people. For instance, his understanding of authority can never be the same as mine. These are largely missing from the books.
The second was all the other conditions that often go with AS. There's OCD (obsessive compulsive disorder) and associated fears. Is this related to a tendency to fixate (perseverate) on an issue? There're allergies and sensitivities to sounds and crowds. Plus, SID (sensory integration disorder) which gives random bodily sensations, and often makes large sensations okay but small ones disturbing. There's synesthesia, perhaps benign to some, for others it can add a bit of confusion and possibly worse. It's common for them not to look at faces, or not be able to look and listen at the same time. And a good rule of thumb is that these kids have emotional ages about 2/3 of their chronological age. So in some ways, we should treat a 13 year-old 8th grader like an 8 year-old 3rd grader (and it might be inaccurate by a couple of years.)
The third part is how to deal with schools. Our experience is that the schools care, but really have no idea how to effectively accommodate AS kids, plus they're seldom able to if they do figure out some strategies. I've identified 3 books that have some promise along this line, but they're more for teachers than parents, and they don't seem to adequately address upsets- how schools cause them, what schools should and shouldn't do, and how parents can successfully advocate for their kids. We have found most elementary school teachers to care a great deal, but simply not have the necessary flexibility nor the time to learn. Many have caused much too much harm.
What's really missing is a registry of alternative schools. This was the only option for my son at the end of 6th grade. Finding an appropriate school was wonderful. There were many problems, but we worked through them in the first year and my son had much more success. His education is now mostly mediocre, and often promising-- much, much better than the failure this much-brighter than-- average kid was experiencing in public schools.
| Most Recommended |
Thinking in Pictures by Temple Grandin. An excellect book about AS/Autism. Temple tells about her life and experience, as well as others' in a book designed to give a broad overview about the differences in cognitive experiences and approaches that are common to most Aspies and autistics. Grandin has published several other apropos books as well.
Songs of the Gorilla Nation, an autobiography by Dawn Prince-Hughes, Ph.D, 2004, 225 pages. (@amazon.) Shorter than Grandin's book, Dawn describes a hellish youth, dropping out of school and being homeless and finally glimpsing some hope when an employer gave her a chance at a safer job. With her first paycheck, she bought lunch and ate it in Seattle's Woodland Park Zoo. Watching gentle, slow-moving gorillas introduced her to non-verbal communication and became her entry into civilization and education. A must-read to begin to understand how difficult it is for many Aspies to live with the rest of us.
Asperger Syndrome and Psychotherapy: Understanding Asperger Perspectives, by Paula Jacobsen. This book focuses on 3 elements of AS people's thinking.
By discussing and illustrating AS from these perspectives, she paints a very interesting and compelling picture of AS kids.
Note that Ms Jacobsen practices in Los Gatos and is excellent at providing counseling about AS issues. Her second book, also recommended, is listed below.
| Schooling |
All the books in this section suffer from lack of detail. What the A.S. first grader needs is very different from the 6th grader, and the 10th grader, yet the books uniformly ignore most age differences. Most offer advice for working with the younger student, with occasional suggestions for the pre-teen and teen.
Also missing from most of these books is much in the way of suggestions for academic accommodations.
Most of the motivation for doing schoolwork is social. These books give little help to motivate students who are not motivated, or who don't seem motivated (due to sensory issues.)
Though I expect these books can help any teacher, I expect there are many A.S. kids for whom success will come only if a teacher dedicates significant time to learning about A.S.
Understanding How Asperger Children and Adolescents
Think and Learn
by Paula Jacobsen.
2005, 113 pages, $19.95/$14.00
A good book with a new approach, understanding the child's
perspective to see how AS children can be successfully worked with and
accommodated.
It's too easy to misunderstand an AS child, or make a decision anyway
when we don't understand, leading to ineffective teaching and harmful
experiences for the child. Understanding the child's
perception, on the other hand, can lead instead to tolerance, helpful
reactions and effective teaching.
Asperger Syndrome:
A Practical Guide for Teachers,
by Val Cumine, Julia Leach, Gill Stevenson.
April 1998, 90 pages, $27/$24/$24
A good book for teachers and educators, with
substantial sections on academic accommodations set into the contexts
of the A.S. child's perspectives.
Asperger Syndrome: What teachers need to know,
by Matt Winter.
April, 2003, 96 pages, $16/$11/$11.
Also good, especially for teachers who don't have
too much time to invest. It is very short- the book is smallish, and
the 96 pages have very large print. It hits the main points
well and succinctly, opening the reader's eyes to many issues
that will need more exploration.
Asperger Syndrome:
A Guide for Educators and Parents
by Brenda Smith Myles and Richard L. Simpson.
1998, 140 pages,
Pretty Good. This has a smaller section on academic
accommodations, but seems helpful.
(Not yet read)
Asperger Syndrome-Practical Strategies for the Classroom:
A Teacher's Guide
by George Thomas, Phil Whitaker, Penny Barratt, Heather Clewley, Helen Joy, Mo Potter
February, 2002, 60 pages, $20/$20/$14
(Not yet read) Asperger Syndrome and the Elementary School Experience: Practical Solutions for Academic & Social Difficulties by Susan Thompson Moore. 195 pages, Oct 2002, $24 new, $17 used.
Asperger Syndrom and Adolescence: Helping Preteens and Teens Get Ready for the Real World, by Teresa Bolick, PHD. This contains all sorts of information, but I was looking in it for information about schooling. The one germane chapter was helpful, but mostly with tips and examples rather than real guidance. For instance, there were several instances where scaffolding was suggested, providing a more detailed framework or helping the child to a certain level. But few details were offered about what this might really look like. (I read a little, and leafed through the rest.)
| For Parents |
Asperger Syndrome and Your Child : A Parent's Guide by Michael D. Powers, Janet Poland Sep, 2003, 320 pages, $15/$10/$6. This was recommended to me as both a valuable primer and handbook. (I haven't read this yet.)
The Asperger Parent: How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor, by Jeffrey Cohen. Though full of insights into AS kids, the book's main message is that it's okay for the parent not to be perfect, not to be able to always cope.
| Biographies and Autobiographies |
Pretending to be Normal: Living with Asperger's Syndrome by Liane Willey, Tony Attwood. A woman's first person account of living with AS. Valuable both for insight into these people as well as what a spouse is in for.
The Curious Incident of the Dog in the Night-Time, by Mark Haddon. May, 2004, 240 pages, $12/$9/$7 A novel about an episode in the life of a high-functioning autistic teenager. This well-written book is an easy to read, good introduction to the effects of sensory issues, tantrums and reactions, with some insight into the nature of relationships for autistics.
| By or For AS Kids |
Asperger Syndrome, the Universe and Everything, by 10-year old Kenneth Hall. This gives an interesting view into the psyche, personality and experience of an AS kid. Treat it with a grain of salt, though, because there's not a lot of depth about what's different about him that causes his differences, nor does he go into detail about his tirades or tantrums, which are important subjects for parents to understand.
| For kids (and adults) |
Buster and the Amazing Daisy: Adventures with Asperger Syndrome, by Nancy Ogaz, Patricia Shubeck 112 pages, Jun 2002, $13/10/9. A good novel about a child with AS that elementary school kids can read or have read to them.
| Others |
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction. by Carol Stock Kranowitz, M.A. Many autistic and AS kids also have Sensory Integration Disorder. (I read part of this a long time ago...