[Disclosures: I have several tips in this book, and I received complimentary copies of it.]
Note: If you donate $15 or more to my Operation Orange fundraiser for our local camp for autistic kids by midnight (Eastern Standard Time, U.S.) tonight (November 10th), I’ll put your name in a hat, and the name I pull out will get a free copy of 1,001 Tips for the Parents of Autistic Boys.
The books 1,001 Tips for the Parents of Autistic Boys and the similar, companion volume for girls were just released, and I got a chance over the last few days to read the one for boys. I only have a copy of that version, so any references to specific sections below may not be the same in the girls version.
1,001 Tips for the Parents of Autistic Boys ambitiously attempts to provide helpful suggestions and ideas across the entire constellation of issues we face as parents. The result is a 480-page guide that for the most part succeeds in providing a wealth of useful information and plenty of ‘aha’ moments from me of ideas I’d never thought about. It’s not without its weakness, and certainly some tips are far better than others, but one of the strengths of this format is that you can take what works for you, maybe learn from some others, and ignore the rest.
In the Author’s Note, Ken Siri states that the book is organized by autism chronology based on how long your child has had an autism diagnosis. I found that the book functioned differently for me, and perhaps this is a positive, if maybe unintended, consequence of the book’s format. I found insights in most every corner of the book, and jumping around the pages seemed as good a way to read it as any. If the author hadn’t mentioned anything about a chronology, I doubt I would have thought about it. For many of us who have a few years with autism under our belts, 1,001 Tips is a brisk skim where we can mark the tips we want to think about later and cruise by the ones we don’t. The strength in this book is that it gives you a load of ideas that I think function very well as jumpstarters that can lead to you getting several new ideas of your own that may help you figure out a problem you’ve been stuck on.
The downside to this format is that there is very little space to expound or build on the ideas provided. However, many of the tips do come with references to their original sources, many of which are freely available online, so you can read more about those if you want to. In a number of cases, I did want additional information or just some clarification that wasn’t available. I see this more, though, as a limitation to this style of book rather than a problem with the way this particular book is written. (Bonus tip: If you want a great online resource that covers individual topics more in depth in essay format, visit The Thinking Person’s Guide to Autism.)
While the following caution is echoed in the book’s introduction, I think it merits repeating. There’s a lot in this book. Some of the suggestions contradict other tips in the book. In general, I think this is OK personally as this is just how the world of autism works right now. But you really do need to read this book with this in mind. No one tip or set of tips should be considered gospel. If you read it with this perspective and your ability to think critically – and this is true for any book about autism – you’ll get much more out of it.
I believe this is especially important to parents whose children just recently got an autism diagnosis. It’s easy to get horribly confused and overwhelmed by all the information that bombards you during this time. The rapid-fire nature of how the tips are presented in this book could make you easily feel like you’re on the business end of a fire hose. Know this is a normal reaction, read a few, put it down, then come back later. And always remember, these are ideas, not verses out of an autism gospel.
So if I had to add any tips to the book, I think I would have voted to start the book with the following:
1. When it comes to autism, don’t believe everything you read.
2. Develop a healthy skepticism to advice, particularly relating to treatments.
3. There’s so much we don’t know about autism that when someone begins a statement with “We know that…” and then proceeds to suggest a treatment or course of action based on what “we know”, there’s a good chance you should be skeptical.
For those of you looking for an introductory text to autism, I think 1,001 Tips is likely going to be a daunting read. Honestly, it wouldn’t be my first choice if you’re just getting your bearings in the wide world of autism. Looking back at our family’s first days with a diagnosis, I think that’s a time when people just need support, an understanding listener, affirmation that their child is perfect and wonderful, and reassurance that they as parents aren’t crazy. After you get that and get your bearings a bit, then start swimming in the information pool.
I personally found the sections on Supporting the Family Unit, Daily Life, and Productive Approaches to Parenting to be treasure troves of good ideas. I noticed I was marking one idea after another there. Not surprisingly, these sections address many of the issues we’re struggling with right now. When you have 1,001 tips, there’s something for everybody in here. (In case you’re wondering, you’ll find me back in the Safety section sharing some tips I learned from an expert and autism mom on our local police force.)
I do have one significant issue with this book. I personally found the section Medical and Nutritional Treatment disappointing. While there is broad coverage in the book of much of what is currently offered, the information presented is often rather technical with not enough background or references to allow parents to do their own research and determine whether these approaches are appropriate for their kids. Given what felt like an excessive number of tips in this section, room could have been made for these perspectives.
In many instances, the information provided comes from tips submitted by those who provide the therapies described, which also applies to the Therapy Implementation section preceding it. This alone doesn’t make their ideas wrong, but professionals who provide certain services will always paint them in the best light. While the purpose of this book isn’t to make value judgments on how good or how ineffective a treatment or therapy might be, they all come across as having a magical quality to them that daily reality regularly doesn’t bear out. All that is to say, just know there’s more to it in many cases.
Much of the information, for example, about biomedical treatments and statements related to ‘toxicity’ issues is limited in perspective to a particular viewpoint. I did not see any tips or commentary from the numerous parents who have tried these therapies, spent tens of thousands of dollars on them, and seen no real improvement from them. Also, there isn’t any discussion from medical professionals who refute the assumptions behind some of the biomedical therapies. I’m not casting a wide blanket over the whole range of these treatments, but I think their portrayal in these sections in many cases oversells their claims while glossing over how many parents and professionals view them.
I’m not going to play doctor here and try to argue for or against particular treatments. There are other places for that. But I do think not including the perspectives of numerous parents and professionals who do not recommend at least some of these therapies and disagree with the assumptions behind them is the one glaring omission of this book. These strong disagreements exist in the autism community, and any survey of autism should acknowledge this. Those of us who have been at this a while already know about all this. It’s those who have just recently received a diagnosis that I address this to. You need to do all your homework, familiarize yourself with the disagreements and controversies, study the research, consult with properly trained professionals, and make up your mind what you think is best for your kids.
While I do realize that the author sought a comprehensive survey of autism topics, a few just really didn’t need to be here at all. Frankly I was shocked by the title of the chapter “Preventing Autism”. We barely have an inkling of what causes autism, and the chapter title presupposes that we do and here’s how to prevent it. However, if you’re reading this book you probably already have an autistic child, so the chapter just comes across as a judgment on your poor, pre-pregnancy and pregnancy, parenting choices. What’s frustrating about this is that the tips in the chapter for the most part are good suggestions in the general sense for pregnancy and when you’re trying to conceive, though some are in various degrees of left field. Putting the “Preventing Autism” label on it, however, projects all of these tips through a lens of assumptions many of which are shaky at best, disproven at worst, and most likely just to make parents feel unnecessarily guilt-ridden.
The previous ranting aside, I do applaud Ken Siri for including several topics that parents aren’t particularly comfortable even thinking about. The sections on puberty, physical maturation, and sexuality were essential inclusions in the book and ones that I thought were handled well. There’s a lot more complexity to these topics than could possibly be discussed in the confines of this book, but it gets you thinking about the issues and so does its job well.
Overall, there are a multitude of helpful tips and ideas in this book, even for ‘veterans’ who have a few years of parenting an autistic kid under their belts. I think those of us who have been at this a while may be the best audience for this book as we perhaps have a more developed sense of which ideas have a good chance of working for our kids and which don’t. I think if I had read this book three or four years ago, it would have been a lot more challenging to process.
While there are some chapters and individual tips in this book I either disagree with or would suggest removing entirely, for the most part 1,001 Tips for the Parents of Autistic Boys contains a variety of ideas and starting points to address the needs of most any parent.
You can get some introductory chapters on their website at www.1001autismtips.com.