The Autism Bookshelf: What Every Parent Needs to Know

 There’s an old episode of The Simpsons wherein the ever-moonlighting Homer becomes a food critic, and to our amusement, the lovable glutton upsets the newspaper’s editor by giving everything he eats a good review. As I complete my eighth book review for The Autism Channel, I’ve gotten this nasty twinge of self-doubt as I’ve paged through my reviews and realized that among them, I haven’t necessarily given any of my subjects a bad review, either.

Why is this? I’m certainly not on any publisher’s payroll. While I do include links to purchase a reviewed book if you would like to do so, it’s more a matter of assisting readers, the logical progression from having recommended the acquisition of a title. If you buy a book I review, I don’t see anything from it. And I’m not afraid of an author emailing me a scathing rundown for not recommending or appreciating his or her work. God knows I’ve committed worse acts in my life than not liking a book.

Luckily, I had my “asked and answered” moment when I looked at my to-read list and remembered that for everything I have chosen to read and share with you, there is also material I’ve elected not to touch. There are a lot of bad ideas about autism out there. For instance, some people would have you believe that it is in the best interests of your child for him or her to ingest bleach. Me, I can’t think of many ideas worse than that. So when presented with anything I suspect may be deleterious to its potential readership, I’ve made my editorial decision simply to pretend it isn’t there. Vitriolic rundowns can be fun, but it’s best not to invite the publicity. So let’s agree instead to concern ourselves only with materials that range from useful to indispensable.

…The content of this book should prove to be a key component in the intervention process, with a wealth of information for its readers across a number of concentrations, from merely understanding autism spectrum disorders to the ways you and your doctor can treat them…

For the parents of a young child with autism, today’s review concerns a book I have indeed deemed indispensable: Autism Spectrum Disorders: What Every Parent Needs To Know, published by the American Academy of Pediatrics and edited by Drs. Alan Rosenblatt and Paul Carbone, the latter having a son on the autism spectrum.

If there’s one thing The Autism Channel’s numerous anchors and guests can agree on, it is the importance of early intervention in the life of a child diagnosed with autism. The content of this book should prove to be a key component in the intervention process, with a wealth of information for its readers across a number of concentrations, from merely understanding autism spectrum disorders to the ways you and your doctor can treat them. The primary narrative, written in a learned but clear voice, is buttressed by insets featuring graphs, charts, and parents’ stories, featuring additional fast facts and helpful anecdotes. While a book published by the American Academy of Pediatrics will hardly encourage its readers to go it alone, Drs. Rosenblatt and Carbone understand the enormous role parents play in their child’s life, and instructs them how they can constructively and lovingly fulfill that role in conjunction with strong pediatric guidance every step of the way.

In a particularly helpful chapter, the editors assist parents and caregivers in negotiating educational services for their child. Take it from me (or better yet, my mom): school systems are often a bureaucratic labyrinth where parents need all the help they can get, and knowing one’s rights with respect to IEPs and IDEA legislation will go a long way in optimizing a child’s educational experience. It isn’t easy. As one featured parent notes, “you have to prepare for a legal fight but hope you don’t have to.” Teachers and administrators, with their time and energy already at a premium, often look for the path of least resistance in their classrooms, even if this means a child on the spectrum slipping through the cracks — cracks which, in many overworked and underfunded school systems, are fast becoming canyons. With that in mind, it is incumbent upon parents to advocate tirelessly for their child and the services to which he or she is entitled, even when that means long IEP meetings and struggles against The System. Without knowledge and advocacy, one cannot expect schools to take the lead.

The editors are cautiously tolerant of some complementary and alternative treatments, while singling out those to be avoided outright. This is where the book truly distinguishes itself as such an invaluable resource. I realize that autism, especially on the lower-functioning end of the spectrum, fills parents with anguish, grief, and desperation. When a child is non-verbal, self-injurious, and markedly delayed in development, his or her autism is not seen the same way it may be on the higher end of the spectrum. It’s seen, rather justifiably so, as something to be cured, a shell for a child to be brought out from, and it’s this line of thinking that leads parents to try anything they can for their child. It’s also understandable that amid their frustration, parents will grow distrustful of their pediatricians and of mainstream medicine, turning to therapies that promise the world but don’t deliver, while adding even greater expenses to cash-strapped households.

The book, however, asks for patience and discretion, warning parents to avoid treatments that have not been proven under rigorous clinical trials. The gluten-free/casein-free diet, for instance, is without available scientific proof, and with the risk of vitamin deficiencies and osteoporosis due to eliminating dairy products, parents are advised to proceed, if they must, with caution. While the GFCF diet is relatively innocuous, other treatments named can, in fact, severely harm children, yielding side effects such as immunosuppression, dermatitis, seizures, and — in the case of heavy metal chelation — death. The book names antivirals, immunoglobulin, hyperbaric oxygen chambers, secretin therapy, and the aforementioned chelation among numerous treatments that are costly, unproven, and dangerous.

That being said, Drs. Rosenblatt and Carbone do not dismiss all complementary and alternative medicine. Probiotics (the healthy bacteria in yogurt) and multivitamin supplements are named as aiding GI issues and accounting for the selective (and often omissive) diets of many kids on the spectrum. Of course, relative to some of the snake oils out there, a good old-fashioned healthy diet is hardly all that alternative. In my experience — strictly anecdotal, of course — I’ve noticed that when I am eating well, taking vitamins, exercising regularly, and averaging seven hours of sleep a night (emphasis on night), I tend to feel less anxious, less depressed, and more engaged with my environment, as if some sludge in my brain has been powerwashed out. I certainly wouldn’t call it “curing my autism,” but I do feel my functioning is somewhat less impaired when I ascribe to these guidelines. Again, though, there’s nothing empirical here. I look at it as kind of a healthy-lifestyle Pascal’s Wager: if it works, great! If it doesn’t, I’m just doing something I ought to have been doing for its own sake anyway. And so perhaps your child, with pediatric guidance, can also benefit from a well-managed and properly supplemented diet, whether in general or with respect to symptoms of ASDs.

…If you are the parent of a young child who has or may have autism, Autism Spectrum Disorders: What Every Parent Needs To Know will quickly prove invaluable…

One final chapter worth noting concerns adolescence and the road to adulthood. Children aren’t children forever, and there will come a time when they are no longer under the aegis of the school system and its support programs. Parents must continue to help their child transition into adulthood: finding his or her place in the community, pursuing further education, and gaining employment. Some will grow up to live independent lives, while others will benefit from more supportive environments, and this chapter helps parents plan for a number of possibilities. Before that point, of course, the editors address the matters of changing bodies, developing self-advocacy, and honing daily living skills.

If you are the parent of a young child who has or may have autism, Autism Spectrum Disorders: What Every Parent Needs To Know will quickly prove invaluable. A lot of people have a lot to say about autism these days. A cursory search of Amazon, or an aisle at your local Barnes & Noble, or even the very existence of The Autism Channel should prove that. But in this loud, crowded, and ever-growing marketplace, not everyone is speaking with the personal and professional experience of this book’s co-editors, to say nothing of the peer review and backing of an organization counting over 60,000 pediatricians. The loudest voices aren’t always the right voices, and it can be a struggle to find those right voices in the din. I suppose that’s why we have book reviewers. More importantly, that’s why we have doctors.