September 7th, 2008
“An Amerian medical guru.”
That’s how today’s Scotsman describes Raun Kaufman, the director of the Autism Treatment Centre of America. Raun Kaufman was cured of autism through the “Son-Rise” method, according to a book by his parents, BarryNeil Kaufman and Samahria Lyte Kaufman. The Scotsman quotes a number of autism experts who express something more than doubt about Kaufman:
Carol Povey, head of adult services with the National Autistic Society, said: “I have spoken to Raun Kaufman and told him there is no cure for autism. To claim otherwise is to mislead families who are extremely vulnerable.”
Dr Katie Cebula, of Edinburgh University, has conducted research into the impact of Son–Rise on families.
The committee member of the Scottish Autism Research Group said: “Around half of those involved reported that it caused some difficulties for their family life.
“Nearly all reported some financial impact.”
The Son-Rise program can cost more than £7,000 (= $12,378); certainly many families spend that much or more on various treatments. We’ve known a few families who did Son-Rise and there was no “recovery,” and the families have moved on to other therapies.
But hopefully not to other “autism gurus.
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By Kristina Chew, PhD -- 0 comments
September 7th, 2008
In the wake of Governor Sarah Palin announcing that families of children with special needs would “‘have a friend and advocate in the White House” as the camera panned to her infant son, Trig, who has Down Syndrome, during her speech at the Republican National Convention last Wednesday night, today’s New York Times takes a closer look at what she’s done and not done for disabled children in Alaska, and about what kind of an “advocate” she might be.
Alaska, both by dint of its sparse population and lack of resources, has often struggled to provide care and educational services for its roughly 18,000 children with physical and emotional disabilities.
For years the state shipped thousands of children out of state for mental health services, a problem so acute that Ms. Palin’s predecessor created a program intended solely to get enough services in the state to bring the children back; from 2004 to 2007 the number of children sent out of state fell to 300 from about 600.
While the state made a decision to close down mental health institutions in the 1990s, it has been unable to provide alternative services for children with mental health issues.
….
Ms. Palin recently signed legislation that rewrote the state’s school financing formulas, in the process dramatically increasing the budget for school districts that serve children with extreme special needs. “She had no role whatsoever” in the development of the legislation, said its author, Representative Mike Hawker, a Republican. “Her role was signing. She recognized the importance of what we did and endorsed it.”
Democrats have pointed, sometimes correctly, sometimes erroneously, to items in the state budget for the disabled that Ms. Palin cut. According to state documents, she cut the state’s Special Olympics budget in half.
The New York Times also notes that Senator John McCain voted to reauthorize IDEA, but also voted against “a measure, with nearly every other member of his party, to increase financing through a reduction in tax cuts for the wealthy.” Gov. Palin is a school-choice advocate and Sen. McCain is a proponent of school vouchers, “denounced by many advocates for children with special needs as draining public money away from special education programs.”
As the New York Times says,
To those in Alaska who work with children with special needs, Ms. Palin’s pronouncement was surprising; the disabled have not been a centerpiece of Ms. Palin’s 20-months in office or any of her campaigns for office.
Fully funding IDEA, the ADA restoration act, the Community Choice Act of 2007, the Community Living Assistance Services and Supports (CLASS) Act of 2007: It will be of more than interest to hear Gov. Palin speak about all of these. (Go here to read what Mike Strautmanis, Obama’s Chief Counsel, has to say on these issues.)
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By Kristina Chew, PhD -- 6 comments
September 6th, 2008
Here’s what readers have been saying in a very busy week in which we learned, or learned again, that the MMR vaccine does not cause autism:
Norah on whether the term “mild autism” is still in use and Larry on the “pop psychology typical of wired [magazine].”
Ongoing discussion about stem cell therapy as an autism treatment, and about the death of Shirley Meade at a camp after being given the wrong medication.
Jaz on what it’s been like in Illinois on a 49-year-old younger brother who was “on a waiting list for a home for 20 years after contacting an advocate he got one of the two places that 52 people were waiting for.”
Regan adds to a discussion on the MMR controversy and notes an interview with Ben Goldacre.
Bonnie Sayers on school security issues.
Readers looks at reports on special education funding in Alaska and Governor Palin.
And keep in mind the deadlines for submitting comments to the Interagency Autism Coordinating Committee that are coming up very soon:
NOT-MH-08-021:Interagency Autism Coordinating Committee Draft Strategic Plan for Autism Spectrum Disorder (ASD) Research is Available for Comment; deadline in 25 days/Sept 30
NOT-MH-08-016: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD); deadline in 14 days/Sept 19
And here’s the poem from a book I’ve had on my desk and have been turning to when in need of a moment away from the fray. The book is Line Dance by Barbara Crooker and this poem captures how I feel on many a day and night.
Climbing the Jade Mountain
(filling out my son’s SSI forms)
The Chinese poets tell us
that to start an impossible journey,
you must begin with small steps,
one foot in front of the other
on the rock-hard road. There are
no maps. The mountain gleams
in the afternoon sun. We
are tired, we are thirsty,
and we want to know
how many dusty miles remain?
The mountain is silent.
All the guidebooks are written
in an ancient language
we don’t understand.
When night overtakes us,
we lie down in a dry
river bed, with a stone
for a pillow. Morning
draws her curtains.
We start again.
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By Kristina Chew, PhD -- 2 comments
September 6th, 2008
Police officers in Freehold, New Jersey, rescued 6-year-old Jahmir Mayfield from biking into traffic. Jahmar has autism and ADHD and had just learned to ride a bike; today’s Asbury Park Press noted that he has a tendency to wander for home and wears a “global positioning tracking device around his wrist.” I have to keep knock on wood, but so far Charlie not been once inclined to take his bike out and strap on his helmet (yes, he always insists on wearing it) and head for the streets on his own. He seems to equate bike-riding with Jim going with him too and I think for now, best he keep thinking that. It’s the downside of freedom of movement.
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By Kristina Chew, PhD -- 6 comments
September 6th, 2008
Stopped at a Dairy Queen from seeing Charie’s neurologist. Charlie stood very close to a woman who was ordering at the window and moved towards us when I called him, and certainly experienced nothing like a Canadian woman, Erica Gosselin, did while recently taking two autistic boys to a DQ. Another reader referred to the (unhappy) reaction of another customer in a letter to the Alliston Herald:
Erica explained that she has a summer job working with these two autistic boys. They are brothers, and the younger one has a more serious form of autism than his sibling; for one thing, he has less physical control.
At least once a week, Erica takes them to the Dairy Queen as a special treat. On this particular occasion, the one she writes about, a man sitting behind them started yelling at her and with frequent use of the “f” word he shouted, “Can’t you control that … kid, I’m trying to eat my … lunch.”
Even when Erica explained about the autism, he continued his abusive language. I was sorry to read that neither a staff person at the Dairy Queen or any other customer offered some kind of support.
Autism creates a serious problem for the one afflicted and the family. They deserve our understanding and probably get it most of the time. This blast from a Dairy Queen customer, we can only hope, is the exception.
I wonder how this man would deal with an autistic child if he was the father? He might learn something. Let’s hope there is enough reaction to this incident that he will feel a certain remorse providing any of the story gets to him.
Understanding first—-it goes a long, long way.
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By Kristina Chew, PhD -- 4 comments
September 6th, 2008
It’s late late Friday night (/early early Monday morning) as I’m writing this and feeling. I think we made it through another summer. Monday will be Charlie’s first day back to school, after an extra-long summer vacation: Due to school construction in our school district, summer vacation started extra early and is ending extra late. “That’s his world,” someone at work said to me when I noted how chaotically Wednesday started in our house. Looking back, I’ve realized that Charlie may have woken up early because he sensed that, Labor Day having passed, it was time for him to be back in the classroom—-and then he realized that he wasn’t going and panicked.
Now there’s only a weekend to get through. Charlie is starting middle school. As we learned from a visit to the doctor Friday, Charlie is 5 feet, 3 inches tall (3 inches taller than me); he’s gotten lanky and lean and muscular over the summer, and I’m starting to see glimmers of what he’ll look like as an adult.
Another reason I found reading Dr. Paul Offit’s new book Autism’s False Prophets so fascinating is because the period of time it covers—-1998 to the present—is roughly that span of Charlie’s life. Charlie was born in May of 1997; when Dr. Andrew Wakefield held the press conference about his research on a link between the MMR vaccine and autism on February 28, 1998, Charlie was nine months old. He’d just started rolling over on his own and was not yet crawling (or showing any signs of doing so); he’d been through a terrible bout of rotavirus that left him a long, skinny, sunken-cheeked baby (Charlie had rotavirus for two weeks). In March of 1998, the pediatrician noted that he had “minor gros motor delays” and scolded me for carrying him too much.
By the end of 1998, it was apparent that “something was not right” with Charlie and I groped my way down into and out of denial that Charlie had “delays”; that Charlie had autism. By April of 1998, we’d accepted that “something was really wrong” and started the process of getting evaluations, finding treatments, and reading too many books and websites. I started Charlie on the gluten-free casein-free diet in June of 1998 and started buying and sending away for supplemnts—SuperNuthera, DMG—-in the next few months. Charlie was diagnosed in July of 1998. In September, he began intensive in-home ABA; a few months later, our non-verbal boy was learning some simple signs (courtesy of one ABA therapist who was studying to be a speech/language pathologist) and communicating, and smiling, and running to the window to watch for the therapists.
Over the next few years, we learned about all manner of treatments educational, medical, biomedical, from secretin to HBOT. We tried many biomedical interventions (even buying some pig secretin at one point); we gave up our jobs and moved back to New Jersey from the Midwest; we moved around New Jersey, schlepping boxes and my piano. And here we are today, parents of a tall and lovely boy, not much of a reader, an ocean swimmer, and a fine guy to spend long afternoons and subway rides with.
A Different Life is the name of a Telegraph article today about 12-year-old Billy Tommey and his parents, Jonathan and Polly:
With no autism on either side of the family, they were baffled when Billy ceased to communicate and appeared to be in constant pain. The diagnosis was confirmed when he was two because he showed the telltale triad of impairments: difficulties with social interaction, communication problems, and an extreme need for routine and repetition. That marked the beginning of his parents’ attempts to make life better for Billy, and children like him.
Jonathan’s response was to do everything he could to improve his son’s health by testing and treating the biomedical disorders that contributed to his condition. He put him on a gluten- and casein-free diet, treated various funguses, viruses and bacteria in his leaking gut, and gave him zinc supplements to increase his appetite.
In 1999, Billy became a television star when Trevor McDonald made a programme about him being the first child in Britain to have injections of a pig hormone, secretin, which temporarily improved his functioning. Afterwards, so many parents of autistic children wrote asking the Tommeys for guidance that Polly started a newsletter in which they could share their worries and ideas.
Nine years on, Jonathan Tommey has completed training as a clinical nutritionist and, last year, he set up the Autism Clinic where he has tested and treated 500 children. Some of them have done so well that he now calls regressive autism - autism that is not evident at birth but begins during childhood - ‘a biomedical disorder with a psychological diagnosis’. ‘Some children,’ he says, ‘have improved so much that you could call them recovered.’
Polly Tommey’s newsletter has become Autism File, “a 132-page quarterly magazine with a print run of 36,000, funded by advertising and subscription.”
It’s been “a different life” for us raising Charlie. Like the Tommeys, what will happen to Charlie when he’s older and when we’re older, and then when we’re gone, our everyday concerns. Three years ago, Polly Tommey asked Autism File readers to answer a questionnaire about what was happening to their children as they grew older; here are some responses:
‘My son is nine and the older he gets I feel increasingly despairing about the future,’ writes one mother. ‘These children won’t disappear when they are 16, but I know of no provision for them unless you are very wealthy and can find them good private care.’
‘I have a son who is 21 and has just finished college,’ another writes. ‘I have had to stop work to care for him full-time. He needs specialist help but there is no residential service for people like him where I live.’
‘My daughter is 22 and intellectually able. However, because she has great difficulty interacting with other people, her academic abilities are useless,’ a third says. ‘She has become reclusive and it gets worse as she gets older. She has tried to commit suicide because she is so lonely and unhappy.’
Minnesota writer Ann Bauer has also written about how it’s been much more difficult with her son as an adult. What about housing, what about a job, what about things to do when not working the job, what about transportation to the job and to anything else, what about when Jim and I are gone, what about…..such a long, long list and so often I have to leave the space for answers blank. It’s all question marks; it is, indeed, chaos all over again, an empty vastness of uncertainty about what will happen to my sweet boy. Who’ll know when his stomach is bothering him and sit beside him to soothe him? Who’ll know what shirt of Jim’s and sweater of mine he loves and remember to keep these near him? Who’ll know that he loves California rolls and eel and the color blue; who’ll walk beside him on the long road when Jim and I are not able to?
Well, I really don’t know. I’m trying to figure it out. Charlie is an only child and my only sister has no children. Someday Charlie will be alone.
But do you know what—–on that 95 degree days in Minneapolis when Charlie was officially diagnosed with autism and the social worker and psychologist pretty much gave us the impression, “there’s not much we can do, that you can do”—-I never, not in a myriad of years, dreamed that I’d be enjoying life, a life with Charlie; making trips into New York with him, sharing packs of sushi, swimming in YMCA pools, laughing and just feeling good to call such a great kid my son. I feared the thought of Charlie growing older, bigger, and stronger. He is all of those now, and I have to be able to help him when the rough thunderstorm moments comes.
We took Charlie to see the pediatric neurologist (he’s in Pennsylvania) on Friday. We made a wrong turn on the way and Charlie, sensing our consternation, had ten minute of agonizing anxiety. Jim got him a hamburger right before we went to see the doctor and Charlie easily let the nurse take his vital signs and, when the doctor entered, said “hi doctor” and responded to questions and smiled and said “no” to have his reflexes tested. And looked the doctor in the eye. Charlie’s as tall as the doctor.
Believe me, I never thought that day would come and it has, and it is—far from any awfulness some might have predicted—very, very good, and getting better all the time.
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By Kristina Chew, PhD -- 9 comments
September 5th, 2008
Courtesy of Wired magazine, a wiki about how to deal with your mild autism. Tips include:
From item #5, Make it work for you:
Asperger’s isn’t an illness, it’s a set of characteristics, and you can turn these to your advantage. Find roles where your relentless curiosity can be a plus. Become an expert in your company or field, the go-to guy* for details, but learn to offer only what’s needed when asked. (* more than 95% of Aspies are male)
I appreciated the positive outlook here and emphasis on using Asperger’s to one’s advantage, and the small Socratic reference to “know thyself.”
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By Kristina Chew, PhD -- 10 comments
September 5th, 2008
What do you do when your income is less than the cost of therapy for your autistic child? That’s the situation facing Dan and Sharon Springer, the parents of 8-year-old Joy Springer, in Nevada. According to KRNV today, Joy’s family also faces the loss of $1000 from Acumen, a state-funded program, due to a state budget crisis. And, Joy’s father is facing unemployment when the branch of Citibank that he works at shuts down. He says:
“We just try to take it one day at a time…..There’s lots of programs out there that stress one day at a time and that’s what we are doing.”
Words to reflect on, one day at a time.
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By Kristina Chew, PhD -- 5 comments
September 5th, 2008
A Bay Area woman was sentence to seven years in prison for posing as a school volunteer or teaching assistant—-and, in one case, the sister of an autistic sibling—-to gain access to classrooms, where she stole teachers’ wallets and, in some cases, opened up credit cards under their names. It’s estimated that the woman, Tynesha West, stole about $100,000. The August 28th Contra Costa Times quotes a special education teacher who says that
West “harmed us more than the money, credit cards, gift cards and identities she stole,” a Lafayette teacher wrote. “She stole all that we stand for: working hard, playing fair and square, following the rules, kindness to others, honesty, being a good citizen — just to name a few.”
I can’t say this wouldn’t have happened at Charlie’s school. I do know that, when anyone visits his classroom for the first time, that person has to wait in the front office and is escorted to the classroom by a staff member. Anyone who’s not staff has to wear a visitor’s name tag and to sign in and out of the front office.
Always saddening to hear how someone uses autism for less than worthy ends.
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By Kristina Chew, PhD -- 2 comments
September 5th, 2008
It’s not unfitting that a week in which a new study further disputing the MMR vaccine-autism link appeared would end with the publication of a book with no less a title than Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, and by no less an author than Dr. Paul Offit, chief of Infectious Diseases, the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. In the words of Orac of Respectful Insolence, Dr. Offit is the “Dark Lord of Vaccination” himself, and the special target, now for some time, of the ire, rage, and general hatred of proponents of a vaccine-or-something-in-vaccines-autism link.
One of those proponents, Generation Rescue founder and Editor At Large for Age of Autism J.B. Handley, has expressed some of these feelings by creating a website, PaulOffit.com, by which he proclaims that Dr. Offit is “the vaccine industry’s most well paid spokesperson.” In a number of articles and other writings over the years, Handley and other anti-vaccine/pro-vaccine-safety advocates have performing the verbal equivalent of tarring and feathering Dr. Offit and widely impugned not only his work as a scientist and doctor, but also his character. After attending an August 2008 press conference on vaccines sponsored by Every Child By Two at which Dr. Offit and actress Amanda Peet were present, June Johnson (director of Defeat Autism Now!), wrote this on Age of Autism:
“I have to say it felt odd sitting that close to Paul Offit. There are few human beings toward whom I feel so much anger.”
More than just the “Dark Lord of Vaccination,” Dr. Offit has been raised (or lowered, I suppose you could say) to the level of some demonic force of evil. An April 2007 article in Nature Neuroscience indeed noted that some of the tactics used against Dr. Offit—-and some autism bloggers, and scientists and researchers who have publicly stated that there is no link between vaccines and autism— resemble those used by “certain animal rights groups” (such as this group).
“I get a lot of hate mail” is actually the first sentence of Autism’s False Prophets; Dr. Offit notes a few choice examples that he has received—-and before you can say, Elementary, my dear Mr. Handley, it’s clear that Dr. Offit’s mail box, email inbox, voicemail inbox, and who knows what else will be filled to the brim in the wake of the publication of his new book, Autism’s False Prophets.
And yet, despite buckets of anger and meanness directed towards him, Dr. Offit’s tone throughout the book is one of thoughtful civility, rigorous and constant adherence to science and the scientific method, and a generosity of spirit and unflagging sense of purpose. After noting all the hate mail he gets, Dr. Offit narrates why he decided to become a doctor by describing two childhood memories. In one, a doctor made a home visit after a n-year-old Dr. Offit was in a serious playground accident; the second memory is about a three-week stay in a chronic care hospital in a room with twenty children, all of whom had polio.
With Autism’s False Prophets, Dr. Offit has written a succinct account of a curious chapter of the history of autism. He traces the rise and fall of hypotheses about mercury and also the MMR vaccine as a cause of autism, beginning with an overview of earlier theories of autism causation and of treatments—faciiliated communication and secretin are mentioned—-that offered parents “false promises” (p. 17). Dr. Offit begins with the 1998 Lancet study by Dr. Andrew Wakefield that set off the whole scare about the MMR vaccine. He shows how books like David Kirby’s 2005 Evidence of Harm and Robert Kennedy Jr.’s 2006 “Deadly Immunity” article in Rolling Stone magazine directly fueled the flames of the so-called mercury militia. The numerous alternative and biomedical treatments for autism are reviewed (pp. 119-124), along with the Autism Omnibus Proceedings and the roles that figures ranging from Don Imus to Representative Dan Burton have played in keeping the vaccine-autism alive in the minds of the public. Dr Offit also considers why scientists have not been able to effectively communicate about vaccines to the public, and about how scientific study after study continues to refute a link.
Autism’s False Prophets also highlights four parents of autistic children who “don’t believe that vaccines are at fault” and for whom a “special kind of venom is reserved” (p. xviii). Kathleen Seidel, librarian and dedicated chronicler of the science and legal issues surrounding autism today on Neurodiversity, is prominently featured in chapter 7, “Behind the Mercury Curtain.” Chapter 11, “A Place for Autism,” describes Camille Clark who is “the best known, most widely read, and arguably the most irreverent autism blogger” (p. 223) for her Autism Diva blog. Dr. Offit also notes Peter Hotez, chairman of Microbiology and Tropical Medicine at George Washington University School of Medicine, and Roy Richard Grinker, professor of anthropology at George Washington University and author of Unstrange Minds: Remapping the World of Autism.
I hope that many, if not every, individual who is certain that vaccines or something in vaccines can be linked to autism reads Autism’s False Prophets and, even more, writes in a public forum about what he or she thinks, and thereby stokes the interest of others to read it. Actually, I hope that anyone with an interest in autism reads Autism’s False Prophets, and not only for the evidence and arguments that Dr. Offit presents to refute the hypothesis that vaccines or thimerosal or mercury might be a cause of autism. Autism’s False Prophets presents a history of the past several years of autism in the United States and, to a lesser extent, the United Kingdom. I’ll be posting more about Autism’s False Prophets and specifically about how the public attention and sometimes paranoia and a vaccine-autism link has distracted our focus away from the other issues—of education, supports and services, housing, employment, and quality of life—-of pressing concern autistic persons and their families, beyond what false prophets and failed poets can claim.
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By Kristina Chew, PhD -- 29 comments
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