1,001 Tips for the Parents of Autistic Boys: Everything You Need to Know about Diagnosis, Doctors, Schools, Taxes, Vacations, Babysitters, Treatment, Food, and MoreI cannot endorse this text for a number of reasons, some merely stylistic but some that are, at least for me, far more important.
by Ken Siri
Stylistic IssuesThe "1,001 Tips" are not actually individual tips. Most of the "tips" are composed of a few sentences from other sources. Too many of these sources are websites, not academic journals or scholarly texts. Some of the sourcing is unclear, as well. The disjointed tips sometimes read like fortune cookies, without much context. The reader is left to judge what is or isn't valuable.
Then, there are longer tips that run a page or more in length. These tend to be the most useful because the length provides context. Still, some of these are also problematic. As is often the case with self-help texts, there is a surplus of buzzwords in the longer passages. I would have excised the buzzwords and paraphrased such content to clarify the intent. Any tip suggesting, "Deconstruct your child's challenges in a goal-oriented framework" (p. 31) is absurd. I've been in academia long enough to recognize someone trying to sound impressive.
The book's format is simply a distraction for me. Too little text on some pages, which seemed inefficient. I want longer, more meaningful advice. Without context, it's just a collection of snippets from other sources. I wanted more value added to the snippets.
I would have also adopted Associated Press style throughout the text. Esquire (Esq.) is not a real title, even for lawyers, for example. It's a nonsense title, not recognized by any serious publication much less any court of law. The use of "Dr." is limited to medical doctors in AP style, for clarity. It is unclear if this text adheres to that rule. Also, writers should avoid referring to someone as an "expert" without some clarification as to why, as such a description is a subjective judgment.
Aggressive Tone, Especially on EducationSection 3, Education, falls within my specialty area. In theory, this is where I am an "expert" armed with a doctorate emphasizing pedagogy (teaching). My first impression of the section was unfortunately colored by the section divider:
Section 3: Education—Planning a Siege:The rhetoric of war is prominent throughout the education section of 1,001 Tips. That's unfortunate. Education should not be viewed as a war, battlefield, siege, or any other such thing.
Your son's diagnosis is complete. You have marshaled your forces and organized yourself. Now heed the words of Sun Tzu [author of The Art of War]… (p. 23)
One of the early tips is to consult an attorney before any IEP (Individualized Education Plan) meetings with school officials. This is unrealistic for most parents I know. First, most can't afford such an attorney, and, second, it is nearly impossible to locate a special education attorney in much of the United States. Even where you can locate such attorneys or special education consultants, there are waiting lists. The fees for "emergency" assistance are outrageous.
The truth is that most educators and school district officials do want to help every child. People do not go into education without wanting to make a difference. The notion that you should anticipate and plan for conflict only increases the likelihood of such.
As someone who works with parents and school districts, I can tell you that the negativity parents often bring to meetings -- before even talking to school officials and educators -- makes these situations unproductive. Instead of first stating that schools generally do their best, the text implies most school districts don't do enough or don't care about each child. In fact, most of us do care and do not like the fiscal limitations we face as either employees or contractors with schools.
If someone begins with a call to an attorney, instead of asking for a pre-IEP meeting and some guidance, I know all too well the damage done to the teachers and staff. They are forever on the defensive, creating an unhealthy stress many students seem to identify and even mirror.
Too many books and articles for parents encourage militancy first, before any obvious need for conflict. Calling IEP planning a siege, war, or weapons is an unfortunate rhetorical choice.
We already have enough distrust and anger in the autism community without even more. There are definitely things parents can do to prepare and to be effective advocates without initially seeming confrontational to educators and advisers.
We need more bridges, not barriers, to solutions for students. We're now in a reinforcing loop of angry parents resulting in defensive schools creating yet more angry parents.
Serious Credibility ProblemsOn page 385 a source is citied that in turn cites "four published studies by the Geiers" on vaccines and autism without any explanation of who these men are. Dr. Mark Geier and Mr. David Geier have been repeatedly reprimanded by the United States Court of Federal Claims and the Special Masters overseeing the National Vaccine Injury Compensation Program.
Even if the text were generally acceptable, a single reference to two men I consider dangerously dishonest is enough to leave me angry for several days. The AMA has said these men should have no standing as "experts" and the Geiers have been found guilty of trying to claim outrageous expenses in the cases in which they testified.
Physician team's crusade shows cracks
Dr. Mark Geier and son David tout powerful drug Lupron, but scientists see serious flaws in their research
Dr. Mark Geier Severely CriticizedThe Geiers have violated Institutional Review Board (IRB) standards established by the United States NIH and various state agencies.
In a letter from 2004:
Also note: as a result of this suspension, you and your co-investigator are prohibited, until notified otherwise, from accessing VSD data derived from Colorado Kaiser Permanente and Northern California Kaiser Permanente institutional officials.
Dr. Geier's testimony has been accorded no weight: Thompson v. Secretary of HHS, No. 99-0436, 2003 WL 221439672 (Fed. CI. Spec. Mstr. May 23, 2003); Bruesewitz v. Secretary of HHS, No. 95-0266, 2002 WL 31965744 (Fed. Cl. Spec. Mstr. Dec. 20, 2002); Raj v. Secretary of HHS, No. 96-0294V, 2001 WL 963984, *12 (Fed. CI. Spec. Mstr. July 31, 2001); Haim v. Secretary of HHS, No. 90-1031V, 1993 WL 346392 (Fed. Cl. Spec. Mstr. Aug. 27, 1993) ("Dr Geier's testimony is not reliable, or grounded in scientific methodology and procedure. His testimony is merely subjective belief and unsupported speculation.");Marascalco v. Secretary of HHS, No. 90-1571V, 1993 WL 277095 (Fed. Cl. Spec. Mstr. July 9, 1993) (where the special master described Dr. Geier's testimony as intellectually dishonest); Einspahr v. Secretary of HHS, No. 90-923V, 1992 WL 336396 (CI. Ct. Spec. Mstr. Oct. 28, 1992), aff'd, 17 F.3d 1444 (Fed. Cir. 1994); Aldridge v. Secretary of HHS, No. 90-2475V, 1992 WL 153770 (CI. Ct. Spec. Mstr. June 11, 1992); Ormechea v. Secretary of HHS, No. 90-1683V, 1992 WL 151816 (Cl. Ct. Spec. Mstr. June 10, 1992) ("Because Dr. Geier has made a profession of testifying in matters to which his professional background (obstetrics, genetics) is unrelated, his testimony is of limited value to the court."); Daly v. Secretary of HHS, No. 90-590V, 1991 WL 15473 (Cl. Ct. Spec. Mstr. July 26, 1991) ("The court is inclined not to allow Dr. Geier to testify before it on issues of Table injuries. Dr. Geier clearly lacks the expertise to evaluate the symptomatology of the Table injuries and render an opinion thereon.").A book should never mention any "expert" without explaining to the readers the background of the individual. This shouldn't be done in a footnote or endnote, either, but inline so a reader can be informed and aware to make his or her own evaluation of the expert. The individuals citing Dr. Geier tend to be aligned with various groups I vehemently oppose on scientific and ethical grounds.
This particular content choice in the book 1,1001 Tips, though minor, reinforced my views of the overall tone and quality of the content. Too often the acceptable or non-controversial advice in the text was surrounded by advice I consider counter-productive or even contradictory.
As readers of this blog know, I don't generally review products or books. I honestly don't care for most things targeting an "autism market" -- though I do have a fondness for some weighted teddy bears I've considered buying just because they're adorable. Other than those bears, I walk by almost anything purporting to be for or about people with autism. Maybe that's for the best.