Friday, June 4, 2010

Book for the newbie parent

I've been reading "Making Sense of Autistic Spectrum Disorders: Create The Brightest Future for Your Child With the Best Treatment Options" by James Coplan, MD.  It's been taking me forever to get through it - partially because I'm finding it somewhat dense reading, and partially because I keep getting distracted by other things (life, you know).  The thing about the book is that I like it, but I'm not sure who the realistic audience is for it.  The target audience is, no doubt, parents of newly diagnosed children.  But it is so intense that I'm not sure that those parents could wade through it; and I'm not sure that the information they'd most want (which is not necessarily the same as what they most need) is at the beginning, where they would want it to be.  


Dr. Coplan gives a backdrop, of sorts, at the beginning.  This makes sense, yet most parents want ANSWERS, up front.  Before they get to the end of the book, where Dr. Coplan is warning them about trendy, possibly dangerous treatments, parents will have already been taken to a TACA meeting or two, caught up in a heart-felt conversation about HBOT treatments, and well into a GF/CF diet trial!  Dr. Coplan considers these things the modern-day equivalent of snake oil sales, and some of them can be dangerous.  He debunks many of the Generation Rescue claims bluntly and with no compassion for those who believe in them - or at least not for their beliefs.  I am not offended by this, but I do think it could turn off some who are confused and inclined to want to investigate "with an open mind."  Dr. Coplan doesn't see any gray area here, and sees any open mind in the area as open to having junk inserted.


He actually is pretty flexible, in the sense that he is open to the use of omega 3's, since he views it as not illogical and not dangerous.  The use, however, of dangerous and potentially lethal "treatments," like chelation, is something he has no patience for.  He doesn't, however, simply dismiss it - he explains, quite clearly, the dangers of the treatments - chelation can cause brain damage or death; HBOT can also damage brain cells, and the (questionable) benefits that have been observed can be obtained in less expensive and less dangerous ways.  


The part of the book I found most useful was his review of various methods of intervention - from ABA to Floortime, to RDI; various classroom approaches; explanations of the uses of OT, PT speech and language.  His review of the use of medication was also quite useful.


Another issue I thought was very important was that Dr. Coplan discussed the fact that ASD has what he calls a "natural history."  That is, whether or not a child receives a particular kind of therapy, or any therapy at all, there will be changes in the way the child behaves, interacts with the world, and matures.  Simply because a child progresses, one cannot ascribe all the progress to whatever intervention a child is receiving.  Progress will occur regardless, simply because a child is maturing, getting older.  Depending on issues, such as the child's cognitive level and degree of atypicality, the child's progress will be greater or lesser, but there will be progress, there will be changes.  The changes will not be even - there will be spurts, and there will, just as with typical children, sometimes be a two-steps-forward-one-step-backwards type of thing.  We can't view everything as being because of a particular intervention!


I wish this book had been out eight years ago, when my son was first diagnosed ... of course, much of what he says was not yet discovered then!

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