Tuesday, November 30, 2010

Easter Seals Survey: Adults with Developmental Disabilities

A representative from WestGlenn Communications (http://www.westglen.com/), a PR firm that works with non-profit organizations, asked me to review an Easter Seals survey related to adults with developmental disabilities and to consider referring readers of this blog to a video discussion.

Understand that this survey was funded by MassMutual Financial Group, which has a vested interest in marketing financial planning to parents of children with disabilities. I am not going to recommend any particular company, but I do agree that those families with the ability must consider how a child with a disability will adapt to adulthood.

The sad truth is that many of us with developmental disabilities are underemployed or unemployed. Surveys of adults with official diagnoses of autism spectrum disorders indicate only 17 percent have full-time employment. That leaves most dependent on public supports, friends, and family. I know that cannot be easy for parents to consider. Also, I know my personal track record of underemployment has been frustrating for my wife and me.

I don't know the full survey methodology, but it seems reasonable and was conducted by a respected polling organization. The survey summary states:
Easter Seals Living with Disabilities Study was conducted online within the United States by Harris Interactive on behalf of Easter Seals between August 18, 2010 and September 13, 2010 among 1,714 adults over the age of 18. Of the total, respondents were segmented into one of three separate groups: 390 adults living with a developmental disability over the age of 18, 318 parents of adult children over the age of 18 who have developmental disabilities, and 1,006 parents of adult children over the age of 18 without disabilities.
This is the introduction to the Easter Seals project (http://www.easterseals.com/):
There are millions of adults living with developmental disabilities in the United States. As a leading provider of services for individuals with autism, developmental disabilities and other special needs, Easter Seals knows how challenging life for someone living with a disability - and his/her family - can be.
Easter Seals Living with Disabilities Study, made possible by MassMutual Financial Group, provides insight into the lives of individuals with disabilities and the everyday challenges their families face. Using key findings from this study, Easter Seals hopes to advocate for the life-long services that families living with disabilities need, especially in areas such as employment, quality of life and financial planning.
The published data from the study include the following:

  • 74% of parents do not believe their adult children with disabilities are financially independent.
  • 39% of parents strongly or somewhat agree their adult children with disabilities are able to work for pay if they want to, compared to 92% of parents of adult children without disabilities.
  • 45% of parents strongly agree their adult children with disabilities will always have a place to live.
  • 40% of parents believe their adult children with disabilities received an education that adequately prepared them for life.
  • 62% of parents believe their adult children with disabilities cannot take care of themselves.
  • 54% don't believe their adult child with disabilities have the ability to make their own life decisions.

The video roundtable can be viewed at: http://www.westglen.com/online/easter_seals.htm

Sunday, November 28, 2010

Social Stories and Role-Playing

One of the standard educational strategies for children diagnosed with ASDs and similar learning challenges is social stories. There is a substantial literature on social stories, most supporting their use and finding some effectiveness. It should concern us that many of the published studies are anecdotal, at best.
Skimming the study abstracts, I am stunned by the number of studies relying on a single child. A "large" study of the effectiveness of social stories included only five students. And then, the recorded improvements are observational and anecdotal. We have no idea if the stories really worked or not. I find little evidence the simple passage of time or the repetition of rules didn't contribute to any observed social skills.

From Focus Autism Other Developmental Disabilities, Fall 1998 vol. 13 no. 3 176-182:
The student was a 12-year-old boy diagnosed with autism, Fragile X syndrome, and intermittent explosive disorder.
From the Journal of Applied Behavioral Analysis, Winter 2001; 34(4): 425–446:
This study investigated the effects of written text and pictorial cuing with supplemental video feedback on the social communication of 5 students with autism and social deficits. Two peers without disabilities participated as social partners with each child with autism to form five triads. Some generalized treatment effects were observed across untrained social behaviors, and 1 participant generalized improvements within the classroom.
From the Journal of Positive Behavior Interventions January 2006 vol. 8 no. 1 29-42:
A multiple-probe design across participants was used to evaluate the effects of social stories on the duration of appropriate social engagement and the frequency of 4 social skills in 3 elementary-age students with autism. Two students demonstrated generalization to a classroom setting. These findings suggest that the use of social stories without additional social skill interventions may be effective in increasing the duration of social engagement and the frequency of specific social skills.
Based on these journal articles, if you study one student, you get a 100% effectiveness. Three students earns 66% effectiveness. Five students, the generalized improvement is observed in 20% of the subjects. In other words, the larger the cohort, the lower the percentage of observed improvement. There are simply too many problems with small tests, including the fact it is nearly impossible to generalize about autism, which is broadly defined, with a study of five students or fewer. You certainly cannot generalize a study of one, two, or even three students. Statistically, that simply isn't possible.
I never understood (and still don't grasp) social stories, examples, role-playing or anything similar. Such things don't make sense to me. If "Johnny" or "Susie" is doing something wrong, tell Johnny or Susie, not me. I've learned to just nod and say "sure" because as I child I got tired of the repetition. "Sure" wasn't a lie, but it was confusing. Now, I just bluntly tell people — tell me what the rules are and don't confuse me with stupid pictures or stories about people I don't know.
I realize that's not a universal, but I seldom get how "other people" think or act, so why would I grasp that some fictional character's motivation is supposed to parallel mine?
When I try to understand characters in a book, it takes a lot of extra effort. I make notes to myself and look things up constantly to understand why a character might do something. When a character turns out to be deceptive, I seldom grasp that until much, much later than other people. Social stories aren't any easier than literature.

Wednesday, November 24, 2010

The Rare Book Review... Not a Recommendation

I don't view myself as part of the market for most autism books found on bookstore shelves, most of which are for parents. These books tend to cover familiar material, too often including data and information I consider faulty or even misleading. However, when I was asked by a representative of Skyhorse Publishing if I might review a book for parents with a section on education, I consented.
1,001 Tips for the Parents of Autistic Boys: Everything You Need to Know about Diagnosis, Doctors, Schools, Taxes, Vacations, Babysitters, Treatment, Food, and More
by Ken Siri
ISBN: 978-1-61608-105-8
I cannot endorse this text for a number of reasons, some merely stylistic but some that are, at least for me, far more important.

Stylistic Issues

The "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 Education

Section 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:
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)
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.

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 Problems

On 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.

See:
http://www.chicagotribune.com/health/chi-autism-lupron-geiers-may21,0,983359.story
Physician team's crusade shows cracks
Dr. Mark Geier and son David tout powerful drug Lupron, but scientists see serious flaws in their research
http://www.casewatch.org/civil/geier.shtml
Dr. Mark Geier Severely Criticized
The 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.
http://www.casewatch.org/fdawarning/rsch/geierk.shtml
The Geiers also have tried to create their own "IRB" to give their "research" an air of respectability. Of course, you cannot really be the reviewer of your own research methods and be taken seriously by respected scientists and journals.
http://neurodiversity.com/weblog/article/98/
From the court records:
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.

Sunday, November 21, 2010

U.K. National Health Service Changes Vaccine Schedule

Right on the heels of my complaints about the anti-vax conspiracy radicals, who are so focused they often overlook issues of concern to all families and individuals with autism and related disorders, comes this twist. Certain to anger the anti-vax movement in the U.K., the National Health Service is considering changing the vaccine schedule. There are also discussions of what can or should be mandated.

One-off 'six inoculation' jabs to be introduced to one-year-olds

Last updated at 5:05 PM on 21st November 2010

Read More

The decision to immunise all the diseases at once, including MMR will create concern with some parents about the risk of side effects with the added possibility that families will not allow their babies to be inoculated in this way.

The joint committee on vaccination and immunisation who advised the government to combine the jabs said research found no safety issues with families 'expected to increase take-up' of inoculations.

It does make me wonder what the response would be in the United States if a commission similar to NICE (National Institute for Health and Clinical Excellence) started to set such policies, which any national system founded on “evidence-based medicine” and cost controls must do. Any national health care system can, and even must, decide what to mandate to control future and current costs. NICE isn’t always so nice... and the U.S. HHS has started to establish structures for the U.S. panel on effective medical practices, which will be based on the Center for Medicare and Medicaid Innovation. Cost control is a primary, not secondary, function of the new panel.

By definition, evidence-based medical care uses statistical analyses to set policy. I understand this and that is one reason I would always want the option of fee-for-service private medical care. The conflict between idealism and reality will really start by 2014 when the U.S. does start to implement health care exchanges with the ability to enforce some mandates on purchasers of nationally modeled health care policies.

We have some difficult choices ahead in terms of what we want and expect from a semi-nationalized, state-federal-private hodge-podge medical system. Vaccine mandates, already part of most public school admissions, could become a nationalized policy.

While I support vaccination programs, national programs with strict policies concern me. Ignoring parents seeking flexibility will cause a backlash and feed conspiracy theories.

Saturday, November 20, 2010

The Anti-Vax Hijackers

On many Web forums dedicated autism, no matter the topic there is an increasing likelihood that a discussion will be hijacked by the anti-vaccine, "curebie," anti-establishment, conspiracy theorists. They are led by "journalists" and celebrities given prominence by the Huffington Post, DailyKos, Age of Autism, and other websites.

They admire discredited men and women, individuals reprimanded in legal proceedings, sanctioned by medical review boards, and disavowed by universities.

Yes, to many of us with science and quantitative backgrounds, the science is firmly established — as firmly as one can expect within medical science. And what annoys us is that self-proclaimed watchdogs and anti-vaccine hooligans, and they are hooligans, point to "journal articles" and demand other articles in response. Of course, the "journals" publishing the Geiers and most others are vanity journals, foreign publications, or minor journals of no standing — but that doesn't seem to register.

No, I'm not going to play the "show us the journal articles" game anymore. It's as absurd as people demanding the journal articles proving evolution. I do put the conspiracy theorists all together. They don't deserve a response because any response will be "part of the coverup" in their minds. The more we try to explain which journals and researchers are "legitimate" the more they will see this as persecution of Wakefield, Geier, and other discredited charlatans. That's not name calling, that's a legal and medical review board fact. The Geiers were reprimanded in a half-dozen legal cases, in very strong language. Wakefiled has also been reprimanded. That's not name calling or being unfair.

But, even citing the long list of legal and review board rulings is seen as participating in the Big Pharma, Evil Government conspiracy. That's the joy of conspiracies, the more evidence against them, the more the committed believe them.

The conspiracy theorists are gaining, because they shout the loudest. Scientists and serious journalists cannot compete against celebrities. I am not sure what researchers and medical professionals can do to overcome these voices.

I am afraid that because science is not perfect, because we always have to admit to uncertainty, because research is a challenge to explain, we will never have the pithy, simple responses necessary to "win" the autism debates. I am starting to wonder if we can even educate most people. It seems to be a losing battle, and that saddens me.

Thursday, November 18, 2010

The Nonsense on Blogs

I won't delve too deeply in this, but I am familiar with the stupidity of people trying to prove I am someone else or the paid shill of this group or that. The basic story is that a blogger at "Age of Autism" (a website I do despise intensely), is trying to "prove" that Sullivan over at "Left Brain / Right Brain" is actually not the father of an autistic child, but is instead… well, I'm not even going to give it more credibility than that. It's stupidity and evidence of how conspiracy minded the extremists are.

Sadly, these extremists seem to come from one side of the debate. They've sent people like me hateful e-mails, even threats. These are not people interested in learning or discussing -- they are like religious zealots. It is ironic that these zealots are often aligned with "progressive" politics. They find standing on Daily Kos, Huffington Post, and other forums.

Let's get this straight, the political community generally associated with faith in government, research, and education has no faith in government, research, or universities when it comes to health issues -- but they also want nationalized health care. Consistency is definitely the hobgoblin in this line of thought.

It reminds me of the colleague who regularly attacked Christians for their "silly faith" (I'm not Christian, so I guess it was assumed I would agree?) but she had crystals and dreamcatchers above her desk to protect her health. And this woman had a doctorate, demonstrating education and commonsense do not go hand in hand. She was also one who kept telling me I should seek out alternatives to the university medical clinic and its corporate shills.

And yes, I know getting political isn't wise, but there's a real problem here with the contradictions. They bother me, a lot. Of course, these same people will say it isn't the government but the corporate powers they distrust. That explains the crystals and dreamcatchers. Sure.

Writing about Autism

For the last two or the three years, I have considered writing a book about autism and education. I outlined the book, sent proposals to two publishers, and wrote 30 or 40 thousand words before abandoning the idea. It lost its appeal to me for a variety of reasons, including the fact I didn't really want to reconsider my most recent educational experiences.

Yet, there are those asking when I'm going to sit down and write about autism. I'm often asked about this when I speak to groups of parents or caregivers. Clearly there is a demand I don't understand. If I did understand it, I'd know exactly what to write.

Until this week, I had not read a complete "self-help" or "advice" book on autism or any other special education issues. I just don't see what such books would offer me and I don't believe my own experiences reflect the current realities of education. Schools have improved a great deal since I was in elementary school, way back in the 1970s. It would be unreasonable to compare my education to what we now provide to students.

I have read books about autism, at least tangentially, but these were autobiographies. Also, I have skimmed basic texts on autism, mainly to compare what mass-market texts contain to what academic texts on autism teach.

There are now so many resources online and in print that I don't know what else can be added to discussions of autism. What in the world would I write that is new and interesting? I haven't the slightest notion of what that might be.

Someone suggested a Q and A with a cowriter of some sort. Maybe that is a good idea. Some sort of roundtable turned into a text? If you think a particular type of book on autism is needed, let me know. Explain what I (or someone else) should write and I'll certainly give it some thought.

I do write a lot; I haven't discovered the right thing to write about autism.

Thursday, November 11, 2010

Facebook Group

I have created a Facebook Group for The Autistic Me:

The Autistic Me Fan Page

There is also a page for Autism Bloggers on Facebook:

Autism Bloggers Group

Several great autism blogs have Facebook pages. I encourage you to search for these and follow the status updates.

Tuesday, November 9, 2010

Twenty Years Ago...

The cliché is that I am supposed to "learn" from the last 20 years. At least I have a great wife and cool cats… but it has been a long 20 years since leaving USC. I believe 1988-89 was the last "good" year. (Like many people, I still view a "year" in academic terms.)

I need to get back to the path I was on then: writing and more writing. I stopped giving my all to the journalism and English programs my last year at USC. I quit the Daily Trojan, ended my journalism internships, and shifted to the school of education for several complex reasons (including hubris). The basic thought was that teaching would be a secure "second choice" since I decided against journalism as my career path. I still love journalism, but I know I'm opinionated and passionate about the topics I might enjoy covering. Of course, a columnist or analyst can be opinionated, so there's hope.

I have been unable to focus since leaving L.A. in Dec 1990. I did finish the English and journalism degrees, at least, before leaving USC. I didn't complete my student teaching, so I never obtained a "clear" teaching credential.

Every few years, I remind myself that I am a writer. Period. I've tried too hard to be something else in return for elusive "security" that never materialized. Drifting from writing, in the name of security, has never produced happiness. Instead, I end up anxious. For a time, I blamed the impulse to write, as if it was my passion for language that made me miserable.

USC was an opportunity squandered by youthful pride. I wanted to prove something to people who shouldn't have mattered to my self-worth. My dream was the LA Times or SF Chronicle. Never, never give up a dream to prove a point -- you'll neither prove the point nor find happiness.

I've spent most of 2010 writing again. Now, I am swearing to not surrender that passion to "security." If I'm going to succeed at something, it will be writing related.

Thursday, November 4, 2010

Vaccination Rates Drop in Wealthier Kids: The Autism Rumors Take a Toll

Vaccination Rates Drop in Wealthier Kids: The Autism Rumors Take a Toll

If there's one great truth of political debate, it's this: when noise trumps knowledge, someone's going to get hurt. That's been proven anew with Wednesday's report that vaccination rates for children with health insurance have been falling — due mostly to fears about the widely disproven link between vaccines and autism. If there was a glimmer of good — and surprising — news in the report it's that vaccination rates for kids on Medicaid are on the rise.

I've read the more education one has, the more likely to embrace alternative medicine, too. I'd like to see this broken down by which academic majors these “educated” people studied. Yes, I do believe we'd find a difference between science majors and the humanities graduates. But, that's only my theory.

I am a humanities graduate (English, journalism), but I found some very vocal academics upset that anyone questions climate science often had crystals and dreamcatchers over their desks. Apparently, one gets to select which sciences are trustworthy and which are not. I'd rather assume most scientists are honest seekers of knowledge. The earth is warming and vaccines are generally as safe as possible. I wonder what happens when parents start to sue doctors who did exactly what the parents wanted and skipped vaccines?