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Schafer Autism Report
  
Friday, January 23, 2009                                                       Reader Supported


In This Issue:


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COMMENTARY
Why Can't We Face The Truth? Having An Autistic Child Wrecks Your Life...

‘Autistic Children Are Now Seen As A Burden’

FINANCES
Six New Autism Insurance Reform Bills Introduced

PUBLIC HEALTH
Report Cites FDA's Weaknesses Over Drugs, Devices

Don't Risk Going Unvaccinated

PEOPLE
"Senator Gillibrand": Supporter of Vaccine-Autism Research

Hacker Accused Wins Fight

RESEARCH
An Investigation Of Ribosomal Protein L10 Gene In Autism Spectrum Disorders

MEDIA
Autism, Food Aversions, and Eating Challenges: Effective Answers that Help - Special Free Tele-Seminar

Shots In The Dark

Special Issue of "Autism Advocate" Available For Free Download

LETTERS
Re: Don't Risk Going Unvaccinated

On Autism and Testosterone

Obama's To Do List





              

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COMMENTARY

Why Can't We Face The Truth? Having An Autistic Child Wrecks Your Life...

      By Carol Sarler on dailymail.co.uk .  tiny.pl/vcd2

      Thanks to a moment of everyday terror, I think I knew before anyone else. My friend's two-year-old had climbed upon a chair from which, with customary toddler clumsiness, he fell.
      Like all children, he managed a second of stunned silence - then howled like a banshee. Like all adults, I rushed to pick him up, to cuddle, to soothe.
      What was unexpected was his response: visibly fearful of my touch, he kicked my belly, disengaged himself and ran away.
      A life sentence: Many parents of autistic children have to give up their jobs to become full-time carers (picture posed by models) I added that to the list I was already mentally composing: no eye contact, ever. Not even with his mum. No shred of attachment to toys, pets, people. Obsessive, repetitive behaviour. Crazed by the sight of other children. Hmm.
      By his fourth birthday, still with nappies, but without speech, everyone else knew, too.
      Tom was - I mean is, and always will be - autistic. I've been thinking a lot about Tom, who's now seven, as the debate rages over the possibility of a prenatal test for autism, with abortion then optional.
      And, so far, most of the argument leans towards such a test being undesirable and unethical.
      Brave and devoted mothers - notably Charlotte Moore, whose book, George And Sam, about her two autistic sons, is immensely powerful - have clung to the positives brought into their lives by their children.
      Backing the emphasis on the positive have been those who point to the frequently high intelligence of the autistic savant, as if we are talking about phalanxes of Mozarts and Einsteins.
      How much poorer we would be without, say, the astonishing brain of Dustin Hoffman's Rain Man! Who would or could babysit this child? Well, maybe. But not as poor as Tom's family: three generations of lives - I include his own - wrecked, for ever, by his cussed condition.
      His parents, let us call them Cath and John, bear the brunt. Immediately after diagnosis, she beat herself senseless with blame; so many theories, each making it her fault.
      Should she have allowed her son to have had the MMR jab? Was it, as some said, a behavioural disturbance caused by 'bad' parenting? Once, she even convinced herself (from something she'd read) that it was mercury poisoning from eating tuna during her pregnancy.
      Theories, however, were soon to defer to practicalities. They strove for a normal life: simple things, such as going shopping together.
      But with the best will in the world, how many shops - or, indeed, how many customers - are going to tolerate a child who screams, bites, defecates and destroys everything within reach? Besides, dangers lurk. Last time I bumped into them in a supermarket car park, Tom was bawling hysterically. Why? Because he had seen a bird. So, mostly, Cath and John stay at home.
        Both their careers are over - not, as for many with small children, on hold for a few years. Each knows that neither will work full-time again.
      There have been attempts with special schools, but none succeeded. Sanity is preserved by each parent having a hobby (fishing and tennis), so one babysits while the other takes a break.
      They rarely go out together, for who else - other than one plucky grandmother - would, or even could, babysit this child?
+ Read more: tiny.pl/vcd2




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• • •

‘Autistic Children Are Now Seen As A Burden’
Dr Michael Fitzpatrick talks about how raising an autistic child is made infinitely harder by the charlatans waging the ‘war on autism’.

      By Helene Guldberg  tiny.pl/vcft

      This article is republished from the December 2008 issue of the spiked review of books.

      Dr Michael Fitzpatrick’s Defeating Autism: A Damaging Delusion is not only a moving personal account of the challenges faced by parents of a child with autism. It is also a powerful exposé of the damaging effects of the numerous campaigns that promise to ‘defeat autism now’ through various ‘biomedical’ treatments, such as special diets and supplements, detoxification and medication.
      ‘Parents are fighting the wrong battles against the wrong people at the wrong time’, Dr Fitzpatrick told me when we met in a café in Hackney, London, near his GP surgery. He believes parents are held back from doing what is best for their own children by the false promises of biomedical campaigners, whose ‘rage’ is ‘a divisive and destructive force’.
      Not only are many of the so-called ‘cures’ for autism that they promote worse than useless - causing discomfort and distress to the children, and even, in very rare cases, death - but the continual drive to ‘defeat autism’ prevents parents from coming to terms with their children’s condition, and can cause them to have a rather negative view of their own children.
      ‘The unresolved grief of parents of children with autism is a particular problem’, writes Fitzpatrick in his book, ‘because they still have a child though perhaps not the child they anticipated’.
      There has been a similar experience in my own family. The firstborn child of my youngest brother, Chris, was diagnosed with a severe form of epilepsy at the age of six months. Although there was a possibility that a combination of anti-epileptic drugs or neurosurgery might cure his epilepsy, in retrospect it was clear that his neurological disorder would very likely result in moderate or severe learning difficulties.
      Facing up to the fact that your child may never develop normally or lead an independent life is very hard for any parent, and will inevitably take time. But at some stage acceptance is necessary, not just for the parents’ own peace of mind, but also for the good of their children. Otherwise, as Fitzpatrick asks, ‘what happens to the child, the human being, who is seen only as a “burden”?’ Of course, raising a child with severe learning difficulties is difficult, but it is a lot more difficult in the absence of acceptance.
      Parents of children with autism who are bombarded with all kinds of promises of wonder treatments are prevented from working through their grief and reaching the stage of acceptance. All of the emphasis on ‘windows of opportunity’ and the importance of ‘early intervention’ puts an immense amount of pressure on parents of children with autism and other learning difficulties, who often end up running around desperately seeking a ‘cure’, and trying one after another; they can become obsessed with ‘fixing’ their child.
+ Read more: tiny.pl/vcft      

      Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.


• • •

FINANCES

Six New Autism Insurance Reform Bills Introduced

      From Autism Speaks.

      Kansas, Massachusetts, Missouri, Mississippi, Utah and Washington have kicked off their 2009 legislative sessions with the introduction of autism insurance reform bills, joining New Jersey, Michigan and Virginia, which currently have active bills making their way through their respective state legislatures. All nine bills are supported and endorsed by Autism Speaks, and require private insurance companies to provide coverage of medically necessary, evidence-based autism therapies, such as Applied Behavior Analysis (ABA).
      Each bill has been referred to a committee and is awaiting a hearing. For more information and to take action on these bills, click the following links: Kansas -- "Kate's Law (Senate Bill 12); Massachusetts -- House Bill 0067_001; Missouri -- Senate Bill 167; Mississippi -- House Bill 720; Utah -- “Clay's Law” Senate Bill 43; Washington -- "Shayan's Law" (House Bill 1210, Senate Bill 5203).

• • •

PUBLIC HEALTH

Report Cites FDA's Weaknesses Over Drugs, Devices
     
      From uk.reuters.com. tiny.pl/vccj

      Reuters - The U.S. Food and Drug Administration, hampered by increasing globalization and a rise in complex products, may not be able to adequately protect the public's health, the watchdog arm of Congress said in new findings released on Thursday.
      "As a result, the American consumer may not be adequately protected from unsafe and ineffective medical products," the U.S. Government Accountability Office (GAO) said in adding the FDA to its list of "high-risk" areas of the federal government.
      New laws were also challenging the FDA's ability to ensure the safety of pharmaceuticals, biologic drugs and medical devices, it added. The GAO releases its list at the start of each new Congress to help lawmakers set their priorities.
      Numerous other groups, including the Institute of Medicine and various advocacy organizations, have cited the FDA's challenges in keeping dangerous or ineffective products off the U.S. market.
      The agency itself acknowledged it needs to be retooled.
      "We need your partnership to reshape the agency and to provide us with the resources and legislative authorities necessary to support our work," Acting FDA Commissioner Dr Frank Torti said to members of Congress in a statement dated Wednesday.
      "For many issues of risk, science does not give us all the answers. When we do not yet know the answers, the FDA will be honest and forthcoming about our uncertainty," Torti said in his statement, which also addressed consumers, scientists and companies.
      Representatives for the agency could not immediately be reached for specific comment on the GAO's report.
      GAO investigators said the FDA needs to have better data on its inspections of facilities in other countries and conduct more inspections.
+ Read more: tiny.pl/vccj

• • •

Don't Risk Going Unvaccinated

      By Paul Offit on Huffington Post. tiny.pl/vccz

      This past year the United States witnessed a measles epidemic that was the largest in more than a decade. About 135 people, mostly children, were infected with measles; some of those children were hospitalized with severe dehydration and others with pneumonia caused by the virus.
      Why did this happen? The answer can be found in a study published in December 2008 in the American Journal of Epidemiology that received little attention from the media. The authors, epidemiologists from Johns Hopkins Bloomberg School of Public Health, examined school children in Michigan whose parents had chosen not to vaccinate them. They compared clusters of unvaccinated children with clusters of documented whooping cough (pertussis) outbreaks. Not surprisingly, the clusters overlapped. The authors concluded: "Geographic pockets of vaccine exemptors pose a risk to the whole community."
      This is exactly what had happened during the measles epidemic in 2008. Almost all of the children who caught and transmitted measles were unvaccinated. The authors of this study had provided an insight into the obvious. If parents choose not to vaccinate their children, not only do they put their own children at risk, they put others at risk. Because no vaccine is 100 percent effective, some vaccinated children can still get pertussis. Others at even greater risk include children who haven't completed the entire series of pertussis vaccines or those who can't get vaccines because they are receiving steroids for asthma or chemotherapy for cancer.
+ Read more: tiny.pl/vccz

• • •

PEOPLE

"Senator Gillibrand":
Supporter of Vaccine-Autism Research


      Huffington Post - By David Kirby. tiny.pl/vcck

      If media accounts about Kirsten Gillibrand of New York are correct, then I am pleased to be the first to report that my new Senator is a supporter of research into possible connections between vaccines and autism.
      The presumptive Senator, a moderate Democrat from the Hudson Valley, is sure to join the growing chorus of voices in the US Senate - and well beyond - in calling for more Federal funding for scientific studies into vaccines and autism, including Senators Kennedy, Dodd, McCain, Lieberman and Enzi, among others, and former Senators Clinton and Obama.
      In the 110th Congress, Representative Gillibrand was one of 22 Co-Sponsors of H. R. 2832, the "Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007." This bill would direct the Secretary of HHS "to conduct or support a comprehensive study comparing total health outcomes, including risk of autism, in vaccinated populations in the United States with such outcomes in unvaccinated populations in the United States."
      Ms. Gillibrand could hardly be labeled as "anti-vaccine" - nor could the bill that she cosponsored, which was introduced by Rep. Carolyn Maloney (D-NY), another short-list contender to fill Hillary Clinton's Senate seat.
      "Securing the health of the Nation's children is our most important concern as parents and stewards of the Nation's future," the text of the bill says. "The Nation's vaccine program has greatly reduced human suffering from infectious disease by preventing and reducing the outbreak of vaccine-preventable diseases. Childhood immunizations are an important tool in the pursuit of childhood health."
+ Read more: tiny.pl/vcck

• • •

Hacker Accused Wins Fight

tiny.pl/vcc5

      A British computer hacker has said he is "gobsmacked" after winning the right to launch a fresh challenge against moves to extradite him to America.
      At the High Court, lawyers for Gary McKinnon, 42, from north London, said his health would suffer and he would be at real risk of suicide if extradited.
      Two judges ruled that his case "merits substantive consideration" and granted him permission to seek judicial review.

• • •

RESEARCH

An Investigation Of Ribosomal Protein L10 Gene In Autism Spectrum Disorders

tiny.pl/vcdz

      Autism spectrum disorders (ASD) are severe neurodevelopmental disorders with the male:female ratio of 4:1, implying the contribution of X chromosome genetic factors to the susceptibility of ASD. The ribosomal protein L10 (RPL10) gene, located on chromosome Xq28, codes for a key protein in assembling large ribosomal subunit and protein synthesis.
      Two non-synonymous mutations of RPL10, L206M and H213Q, were identified in four boys with ASD. Moreover, functional studies of mutant RPL10 in yeast exhibited aberrant ribosomal profiles.
      These results provided a novel aspect of disease mechanisms for autism - aberrant processes of ribosome biosynthesis and translation. To confirm these initial findings, we re-sequenced RPL10 exons and quantified mRNA transcript level of RPL10 in our samples.
      Methods: 141 individuals with ASD were recruited in this study.
      All RPL10 exons and flanking junctions were sequenced. Furthermore, mRNA transcript level of RPL10 was quantified in B lymphoblastoid cell lines (BLCL) of 48 patients and 27 controls using the method of SYBR Green quantitative PCR.
      Two sets of primer pairs were used to quantify the mRNA expression level of RPL10: RPL10-A and RPL10-B.
      Results: No non-synonymous mutations were detected in our cohort. Male controls showed similar transcript level of RPL10 compared with female controls (RPL10-A, U=81, P=0.7; RPL10-B, U=61.5, P=0.2).
      We did not observe any significant difference in RPL10 transcript levels between cases and controls (RPL10-A, U=531, P=0.2; RPL10-B, U=607.5, P=0.7).
      Conclusion: Our results suggest that RPL10 has no major effect on the susceptibility to ASD.
      Author: Xiaohong Gong, Richard Delorme, Fabien Fauchereau, Christelle M Durand, Pauline Chaste, Catalina Betancur, Hany Goubran-Botros, Gudrun Nygren, Henrik Anckarsater, Maria Rastam, I. Carina Gillberg, Svenny Kopp, Marie-Christine Mouren-Simeoni, Chris

• • •

MEDIA

Autism, Food Aversions, and Eating Challenges: Effective Answers that Help - Special Free Tele-Seminar 

Momsfightingautism.com 

Tuesday, January 27, 9:00-11:00 pm EST, 6:00 - 9:00 pm PST Topic Guest : Lori Ernsperger, PhD   

      Moderator: Chantal Sicile-Kira Sponsored by The Autism File magazine. Those who register at www.momsfightingautism.com/teleseminar will receive a free download of an article from the latest winter edition of The Autism File magazine to be published on January 29. Subscriptions available (www.autismfile.com).

      Lori Ernsperger, PH.D., an expert in the field of autism and behavioral disorders, has over 22 years' experience working in the public schools as a classroom teacher, administrator, and behavioral consultant.   She owns and operates Autism and Behavioral Consulting, an agency that works with school district personnel and families to provide effective educational programs and best practice strategies for students with autism and behavioral disorders. Dr. Ernsperger has authored two books, Keys to Success for Teaching Students with Autism and Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges, and co-authored Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges.
      Chantal Sicile-Kira is the author Autism Life Skills: From Communication and Safety to Self-Esteem and More - 10 Essential Abilities Every Child Needs and Deserves to Learn www.chantalsicile-kira.com . 

• • •

Shots In The Dark

tiny.pl/vcwc

      We are proud to announce a new film from award-winning senior documentary filmmaker Lina Moreco of Canada. Lina's work includes Medicine Under the Influence, 2007 Winner of the Gemeaux Award for Best Documentary: Nature & Sciences.
      According to Teri Arranga, U.S. consultant to the film, "Lina Moreco's track record for thought-provoking documentaries is evident in Shots in the Dark. From laboratories in Canada to homes in Paris to medical practices in the United States, and through talking to researchers, clinicians, and survivors, Shots in the Dark's examination of possible side effects of vaccine ingredients -- spanning three countries and examining various health conditions -- illuminates this vital area in a compelling way that cannot be ignored."
      Please visit: www3.nfb.ca/webextension/shots-in-the-dark/
      The English language film will be available for on-line purchase at approximately the end of January 2009.
      Projected U.S. Premiere - The English language film is projected to be available for first viewing in public in the U.S. at the Autism One 2009 Conference, Chicago, IL. (Screening of the film will be free; copies of DVD will be available for purchase).
      For information about viewing in Canada please see website.

Film Summary:
      Following the increase in cases of autism and other immune disorders among some particularly vulnerable people, several recognized specialists are questioning the safety of large scale vaccination.
      Despite the serious side effects, pharmaceutical companies, the medical profession, and government authorities continue to bury their heads in the sand, refusing to see a serious problem. In Canada, the United States, and France, as in most industrialized countries, victims are almost without recourse despite the high toxicity of substances such as mercury and aluminum contained in vaccines. With this hard-hitting documentary, Lina B. Moreco highlights a very worrying public health problem.

Additional Background Information:
      Since they were introduced in the early 20th century, vaccines have been regarded as a tremendous medical and scientific success. Today, perceived as a necessity, they are so familiar to us that their potential risks are rarely mentioned.
      However, the stakes are significant. Based on recommendations of health agencies, North American children receive about 48 doses of 14 different vaccines before the age of 6—double the amount prescribed 25 years earlier. Despite this extraordinary increase, few studies independent of the pharmaceutical industry have been conducted into their long-term side effects. This is a disturbing situation given the numerous toxins, including mercury and aluminum, contained in some commonly administered vaccines.
      Several worried pediatricians and scientists are sounding the alarm.
+ Read more: tiny.pl/vcwc

• • •

Special Issue of "Autism Advocate"
Available For Free Download


      By Carin Yavorcik.

      Articles offer resources, insight into ABA therapy In order to reach as many professionals as possible in the behavioral field, ASA has just made the December 2008 issue of its quarterly magazine, the Autism Advocate, entitled "Applied Behavior Analysis: A Powerful Tool for Improving the Lives of People with ASD," available for free download on our Web site. This seminal issue on ABA describes the many exciting developments in the field that are improving the lives of individuals on the spectrum and their families. To obtain your free copy, visit, www.autism-society.org/autismadvocate_aba. For those without computer access, call 1-800-3AUTISM, x120, or e-mail editor@autism-society.org for your free printed copy (while supplies last).

• • •

LETTERS

Re: Don't Risk Going Unvaccinated

      The thing Offit can't grasp is that parents are scared. They see the stories on the news--normally progressing child regresses into autism following vaccinations. They hear about autistic children everywhere that no one can reasonably explain.
If you read Offit's new book, you'll see he doesn't believe there really hasn't been an increase in autism. "Two phenomena likely account for the increase. First, the definition of autism has broadened to include children with milder, more subtle symptoms.
       During the time of Leo Kranner and Bruno Bettelheim, children with mild symptoms of autism may have been described as 'quirky' or 'different' or 'unusual' but not autistic. Today, these children are more likely to be diagnosed with autism spectrum disorder or Asperger's Syndrome or pervasive developmental delay. Second, in the past children with severe symptoms of autism were often considered mentally retarded. Today, as the number of children with severe autism has increased, the number with mental retardation has decreased." (p. 3-4 AFP)
(See: What is Paul Offit's Problem? tiny.pl/6znk )
      Offit has never had to show proof of this claim. If there are all these undiagnosed/misdiagnosed adults, where are they? There's never been a study that could find autistic adults at a rate even approaching what we see in our children. When we talk about autism, we're always talking about children with autism and that simple fact should be scaring us all--even Paul Offit.
      - Anne Dachel

• • •

On Autism and Testosterone

      By Dr Lorene E.A. Amet, Principal Scientist Autism Treatment Trust.

      I think it is important to voice a scientific view that differs markedly from that of Simon Baron-Cohen of the Cambridge Autism Research Unit who has, according to recent media reports, been calling for a debate on pre-natal screening for autism.
      Several aspects need to be taken into account in this important matter: Is the issue of elevated testosterone in autism valid? Is elevated testosterone specific to autism? What are the consequences for individuals with autism and future families contemplating pregnancy, particularly in light of recent media coverage depicting autism as a serious debilitating condition? What other issues in autism are being overlooked with the endorsement of this speculative hypothesis?
      First of all, it is by no mean proven that an excess of testosterone is implicated in autism. Whilst the recent study from Auyeung et al. conducted on 235 non-autistic children suggests that there is a relationship between higher levels of testosterone and higher autism trait quotients, it should be highlighted that the quotient of autism that was measured in this study relied on the use of two parental questionnaires (the Childhood Autism Spectrum Test and the Child Autism Spectrum Quotient) and not gold standard psychometric measurements of autism, which are based on observations made by trained psychologists and paediatricians. The study seemed to rely on earlier research that suggested a link between autism and high levels of testosterone, but these were equally controversial. One piece of research, also conducted by Simon Baron-Cohen, suggested that individuals with high functioning autism have a low empathy quotient, and this was attributed to excess maleness, i.e. testosterone. However, the empathy test used for these studies relied essentially on measuring empathy within a social context, which, not surprisingly people with Asperger’s are poor at, as they frequently do not have full social understanding irrespective of their empathic abilities. A second type of research, also led by Simon Baron-Cohen suggested that the ratio between the length of the second and forth digit (2D:4D) in people with autism is indicative of an abnormally high level of embryonic exposure to testosterone. These abnormalities in 2D:4D ratios have not been replicated by others, and are, at best, very indirect evidence of testosterone secretion. In fact, other genetic factors are also known to influence this ratio.
      Whilst some individuals with autism may indeed have abnormal steroid metabolism, and present with excessive androgen levels, as measured in blood and urine samples, these abnormal findings appear to be by no means representative of the autistic children seen today, especially children who have experienced regressive autism, characterised by a loss of already acquired skills in the areas of communication, socialisation and behaviour. Many of these children present with a failure to thrive physically, and are often under weight and have delayed maturation, which is hardly compatible with excess testosterone.
+ Read more: tiny.pl/6znk

• • •

Obama's To Do List

      Autism Screening Tops Obama's Medical To-Do List should also include a campaign to strongly recommend that all women have themselves tested for heavy metal toxicity before becoming pregnant. The EPA estimates that one out of six American women have enough environmental toxins in their body to give birth to a child with neurological disorders. The Center for Disease Control estimates that one out of six children have learning disabilities.
      Heavy metals can be removed through chelation therapy and other methods of detoxification. With a continuing epidemic of autism, ADHD, Bipolar and other neurological disorders it is imperative that we address the cause to prevent these disorders.
      Besides being exposed to heavy metals through the flu vaccine, fish and amalgam fillings, our food companies need to be held accountable for using artificial food coloring that contains lead, mercury and arsenic. A toxic environment with a toxic diet equals a toxic human being and must be honestly address if we are ever get to get a handle on this crisis. 
      - Deborah Merlin Mother/author www.victoryoveradhd.com




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