Title: Autism Breakthrough
Author: Raun K Kaufman
Publisher: St Martin's Press
Pages: 341 (e-book)
Autism Breakthrough: Additional Content
Autism Treatment Center of America: Facebook
The Son-Rise Program: Blog
[I am required by FCC law to inform you that I received a free e-copy of this book in exchange for my fair and unbiased review. I hope you feel better now.]
- Autism now affects 1 in 68 children and 1 in 42 boys
- Autism prevalence figures are growing
- Autism is the fastest-growing serious developmental disability in the U.S.
- Autism costs a family $60,000 a year on average
- Boys are nearly five times more likely than girls to have autism
- There is no medical detection or cure for autism
These are startling statistics and should awaken anyone who reads them to the fact that Autism is a serious medical condition that desperately needs to be addressed from the highest levels of authority to the lowest, in churches, synagogues and mosques, and in nuclear and extended families. To put a fine point on this: as someone who works with students who have an autism spectrum disorder, I welcome research, interventions, and ideas from any place I can get them.
These statistics are even more startling when the field is narrowed to the 1 in 42 boys and boys are 5 times more likely than girls to have autism. It seems as though every day there is a new statistic appearing in the news about autism. So I'm not sure, honestly, what to do with some of the information that I, as a trained professional, read on a daily basis. In the statistics above, Autism Speaks states fairly confidently that 'there is no medical detection or cure for autism.' Yet on page two of Autism Breakthrough Kaufman states unequivocally: "Children on the autism spectrum are capable of great change including recovery" (2).
So what is one to do with such disparate points of view? Is it a matter of merely splitting the hair of difference between the words 'recovery' and 'cure'? Is it merely a matter of having super-human parents who love their children into some sort of neurotypical wholeness? Is it merely a matter of having enough faith to distrust what medical science has told us, what scholars (in the sense of peer-reviewed writing) have written to us, and what most advocacy groups teach us about autism spectrum disorders and going off in direct and absolute contravention of these specialists to do our own thing–a sort of 'damn the torpedoes' kind of approach?
These are some of the thoughts that were swirling around in my head by the time I finished reading Autism Breakthrough. Another significant collection of thoughts I had was this: Suppose I am a parent whose child has just been diagnosed with an ASD. Suppose I have no idea what to do, where to go, or what steps to take? Suppose I have two sets of information in my hands. One set of information says that my child can recover, the other states it is a lifelong condition. One set of information is from the collected works of established medical science, the other set is from an outlier. One set gives me hope and so does the other. What on earth am I supposed to do?
Here, I think, is the crux of the issue with Autism Breakthrough: I think there is a huge difference between selling a set of interventions and selling a cure (or recovery). At the end of the day, I have no problem accepting that what is written in this book might very well be a set of outstanding interventions for children (or adults) on the Autism Spectrum Disorder. As I noted above: I work with students on the ASD every single day and I happily welcome any and all interventions that might help my students and/or their families. Nevertheless, I think it is somewhat irresponsible to suggest that what is contained within the book could lead to a 'recovery' or a 'cure.' I think it's even worse when said 'recovery' is set over and against accepted, evidence based practices such as applied behavior analysis. There are many, many interventions that may prove helpful to families facing an autism diagnosis and I think each family will have to explore these options and decide, along with their doctor, which interventions are appropriate for their situation.
Now, on to a couple of finer points of criticism and praise.
First, there is undoubtedly a level of enthusiasm in this book that stands in stark contrast with what one normally reads concerning autism. If points could be awarded based on enthusiasm alone, I would rate this book very highly. The last chapter of the book deals with attitude and I happen to agree that attitude is extremely important when dealing with any disability. The author of the book works very hard to make certain that people are given hope and encouragement in the face of what might otherwise be devastating news from a doctor. I tell my parents this all the time: have hope! We will work through this difficulty together.
Second, at the end of every chapter there are links to additional online resources. There are additional papers, charts, and resources that will provide extremely helpful to the family needing to track behaviors or 'stims' or other issues their child may be experiencing. Collecting data is a significant factor when determining interventions for children and I found the extra resources helpful and appropriate.
Third, there is an extensive resource list at the end of the book that I also found helpful–especially if, like me, one wants to do additional research or quantify the author's points. Additionally, there is a rather long 'academic' paper at the end if parents or professionals wish to verify the validity of the author's assertions by examining peer-reviewed research. I appreciated the resource list and the paper, but I found it disappointing that there were no footnotes or end notes contained within the book itself. Anecdotes are fine, but it seems to me that having one's work verified, having anecdotes verified, is extremely important when dealing with people's lives. (I get that it is a popular work and that bulking it up with footnotes or end notes might not be the easiest thing to do, but this is offered to us as a serious work, about a serious condition, and is purporting that certain interventions might possibly lead to a recovery. In my opinion, references to validate such assertions, even the anecdotal assertions, should be provided.)
Now for a couple of minor criticisms–aside from what I have already mentioned in the above sections.
First, as noted above, autism spectrum disorders affect boys nearly five times more than girls, yet throughout this book the author persisted in using feminine pronouns (she, her) when talking about children. It's a small thing, but it was extremely annoying for precisely that point: autism affects more boys than girls. Yes, we live in a world where we need to be sensitive to everyone's concerns, but I just wonder who the author was writing to? In this respect, it's not a small thing. If the majority of children on the AS are males, then stick with using pronouns that are appropriate to the population being addressed.
Second, throughout the book the author continually referred to autism as a 'social-relational disorder' (33: "What is incredible is not that we would use this model, but that it is still controversial to use it with children whose main challenge is creating relationships!" 108, etc). Defining autism as merely an inability to socialize or relate seems to me a disservice to those who are actually on the autism spectrum. I could not find autism defined as a social-relational disorder anywhere except this book. I am no way denying that social-relational issues are part of the peculiarity of autism, but I am saying that it is not the defining characteristic of autism. Defining an autism spectrum disorder as merely a social-relational disorder seems to deny the other salient points that medical research has brought to our attention concerning ASD (I would gladly stand corrected if someone directs me to such a definition in a recognized medical, behavioral, psychological peer-reviewed journal.) If autism is merely a problem creating relationships then I am certain the interventions will be helpful in solving some of those difficulties, but I am skeptical that it will help with all the other issues that science, and experience, has told us are neurological and/or biological. (The Autism Speaks website notes: "ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art." Clearly we are dealing with more that mere social-relational issues.)
As far as an intervention is concerned, I am sure the Son-Rise Program (the catalyst behind the writing of this book) is effective for some children and/or adults. There are a lot of positive and encouraging words and anecdotes contained in the book which makes the book not only an easy read, but also an uplifting book. Personally, I think some of the interventions are wonderfully conceived–I especially like the idea of 'joining' and plan to implement it, to the extent that I can, in my classroom. I absolutely agree with the idea that we have to persist in our efforts, believe in our children, love our children deeply, a 'nonjudgmental and welcoming attitude' (249), provide them with everything they need (including, if a doctor deems it healthy and necessary, dietary restrictions), and a generally positive and safe environment where they can grow, be themselves without fear, and develop. I also agree that how we do things matters to: "We remain married to the idea that, in the therapeutic and educational setting, the only thing that matters is what we do, rather than how we do it" (254). Amen. Attitude matters–at home and in the classroom; bank on it.
I'm sure there is more to say–positively and negatively–about the book itself. I am also sure that someone is going to say it, somewhere, and at some point. My overall impression of the book is very simply this: If you have met one person on the autism spectrum, you have done just that: you have met one person. I suppose we could say that for as many people that there are on the Spectrum there might be developed an intervention. My point is that these interventions might work very well for some, they might not work for all. As with all interventions–and I think it is unfair to disregard ABA interventions out of hand as if they have never worked–Son-Rise Program needs to be investigated by each family that wishes to consider it for use. In coordination and consultation with a licensed physician, it is important that all due diligence is done in advance before any intervention is put in place. I hope the author of Autism Breakthrough would say as much himself.
As another tool in the tool belt of interventions, I think this is a worthy volume.