Saturday, August 07, 2010

Book review: Making Sense of Autistic Spectrum Disorders

There is no easy way to start this post, so here goes. Our son has been diagnosed as being on the Autistic Spectrum (ASD). In particular he has been diagnosed as PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). I won't get into a lot of details here about what is different about PDD-NOS and "autistic" but he is being treated by a Developmental Pediatrician for (among other things) Autistic symptoms.

So why am I writing this? Two year ago Christopher started Preschool at the same church-school that our other daughters went to. He was definitely different as a toddler than both girls, but they weren't that similar either. By Christmas we knew something wasn't right, so we started having him tested and eventually moved him into a special needs preschool at the local public elementary school. As good as Christopher's doctors, therapists and teachers are, I still found myself overwhelmed with what was going on.

His doctor explained things well, we asked lots of questions and took lots of notes, but sometimes we missed things, or got so hammered by what was going on we missed subtle things. And, at least for me, I was afraid of the answers to some of my 'why' and 'what will happen when he's older' questions, so I didn't ask them.

We were given a lot of books, articles etc. I spent a lot of time reading on the internet, but still didn't have a good idea of what was going to happen. Honestly, we still don't know, but the book I am going to review below helped answer a lot of questions.

I found this book by accident. I was on the campus of Georgia Tech before a meeting and decided to kill a few minutes in the Barnes and Noble there. I saw this book on one of the tables, read a few pages and immediately bought it. To this day I haven't seen it in any other Barnes and Noble when I'm just walking around, so I got lucky that day.

The author is James Coplan, and from what I've been able to find out about him, a respected Developmental Pediatrician with many years of experience with Autistic children.

The first part of the book is about what the Autism Spectrum is, how your child can be diagnosed, some scientific information about what may cause Autism and what it means. It tackles head on the "Explosion" of autism diagnoses the media has been hysterical about and talks about what scientists do know and what has been proven false. Even if you don't read the whole book, find it in a bookstore and read Chapter 4.

Having completed the evaluation process for Christopher, what he writes about was still fresh in my mind. Several things I hadn't heard before were presented, several that I had heard but hadn't quite comprehended were touched on. Fortunately for my understanding, but unfortunate for Autistic children, the 'what' was presented and the author clearly stated when they don't know 'why'. There are still a lot of WTF things that are proving scientifically/statistically valid that can't be explained. Things like the jump in head circumference as an infant that has a high correlation to a later ASD diagnosis.

The second part talks about intervention approaches, progression of therapies as age and abilities increase including a pretty good set of chapters about school and how to tell your child their diagnosis. We are still really early in these processes, but it was relieving to see some of the 'next things' that we will be doing in the years ahead.

The last chapter in this section was one of the best in the book. He hits heads on the "Quackery" that is in the Autistic community. From the outright frauds, to the overzealous but good meaning therapists who say they can "cure" Autism. Having already thrown money at Christopher's therapy a few times it was a good reminder that there are no quick fixes. (Though sometimes the unexpected 'new' thing helps a lot. I'll write about the iPad we bought Christopher in another post.) The author also makes a suggestion/plea to the parents to be more open to letting their child take part in well defined and well supervised trials to see if new treatments work or to help with the "pure science" that we lack in understanding these diseases.

The last section was very refreshing and touched on the topics of the family, financial planning and what may happen in the years ahead. He included an example of a prescription he wrote to the parents of a severely Autistic child. What was it for? "Dinner for two, refill six times, take as needed". He even asked for the receipts to prove the parents were taking time to maintain their relationship. He also reminds us to take care of our other children. This is one area where I think we are doing okay, but sometimes you need to be reminded.

The final chapter in the third section is about the practical matters of finances, special education rights and planning for the care of your child after you die. Not something you want to think about, but one of the examples hit home. The parents were no longer able to restrain their 12 year old autistic son when he hit puberty and had to place him in a group home. While I don't think we'll come to that with Christopher, at 4 he is already head and shoulders over most 4 year olds and is very strong. That could be us some day.

The book ends with a lot more medical/technical discussions and several dozen pages of references and resources. The section about the drug treatments and why they help is fascinating.

Unlike most of the other books and articles we've read about ASD, this is the first that either doesn't dumb it down or have 12 syllable words ever other word. The flow of the book is very good and I found it easy to read. I did have to put it down a few times to digest what we may encounter with Christopher.

For anyone entering on this journey and feeling overwhelmed, this is a great book to start with. Every chapter has tons of references if you want to dig deeper into an area when you are ready.

So do we know now what is going to happen with Christopher? No we don't. We've seen some significant improvements based on some therapies (and time) and others that didn't seem to help at all. I still lay awake many nights wondering what is going to happen to him and us. I worry a lot about the impact of this on our daughters, but I am also impressed and proud of how they are coping and how this is shaping their views of what they want their futures to be. We're still optimistically putting money every month into his college savings and so far haven't had to divert those dollars into his treatment (don't get me started on the insurance practices I've learned about, but I can say they have been both good and bad.)

What does this mean for this blog? Not much. I'm not going to be blogging exclusively about Christopher, Autism research/breakthroughs etc. I will blog about things that we find out that help or didn't, but I'll still blog about general family things.

Making Sense of Autistic Spectrum Disorders
James Coplan, M.D.
ISBN 978-0-553-80681-6


overtly trite said...

thanks for sharing this Chris. It's a challenging situation that you & Deb seem to be handling with a grace & purpose that is amazing.

ryssee said...

I haven't posted a comment because I don't know what to say! I'm interested in your future posts since I don't know much about this subject. Best wishes with your beautiful boy. I think that with your wonderful wife and kids it's gonna be fine, just different than you expected.