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Sweden to check birth blood samples of autistic Somalis

29 Mar

Swedish researchers explore Somali-autism link discusses a study to use blood samples from samples taken at birth:

The researchers at the Autism centre for small children in Stockholm want to see if the samples contained in the so-called PKU register, which is used on newborns to detect a slew of illnesses, can explain the differences in levels of autism between children of Somali and children of Swedish origin.

“We want to look at the vitamin D levels at a very early stage in children who are later diagnosed with autism,” Elisabeth Fernell at the Autism centre for small children told the Dagens Nyheter (DN) daily.

The story linked to above has some weaknesses, but it is interesting that the study is being undertaken. People are looking at the question. This group in Sweden. The CDC together with Autism Speaks in the US. The Minnesota Department of Public Health.

Somali community start to fight back against Andrew Wakefield and Generation Rescue

26 Mar

Taken from http://www.startribune.com/lifestyle/health/118686794.html

Hodan Hassan of Minneapolis understands why some parents are afraid to have their children vaccinated. Until recently, she was one of them.

But today, Hassan will be one of the featured speakers at a Somali community forum designed to allay fears about vaccines in the midst of a measles outbreak.

“[I] read about how the world used to be without the immunization program,” said Hassan, who has four children, including a daughter with autism. “This generation doesn’t understand the benefit, and the importance, and how lucky they are having an immunization program in place.”

So far, 11 cases of measles have been confirmed in Hennepin County since February, five in Somali children who had not been vaccinated. Experts say that vaccine rates have dropped in the Somali community, along with other groups, because of unfounded fears of a possible link to autism.

Now, Somali physicians and state health officials have joined forces to counter what they say are widespread misconceptions about vaccine safety, which has left many children vulnerable to preventable diseases. The concern has grown in the last two years, since a Health Department study confirmed that there were an unusually high number of Somali children in the Minneapolis schools’ autism program.

In Hassan’s case, she stopped vaccinating her children after she learned that her daughter, Geni, now 6, had autism. At the time, she said, she was desperate for answers. Medical experts could not explain what caused her daughter’s condition, a severe communication and behavior disorder. But she quickly learned about the autism activists who blame the vaccines, in spite of medical assurances to the contrary. She began reading their books and attending their conferences, she said, and the fear took hold.

In December, she said, she turned out to hear Andrew Wakefield, the hero of the anti-vaccine movement, at a Somali community meeting in Minneapolis. Wakefield conducted a now-discredited 1998 study suggesting a link between autism and the measles, mumps and rubella (MMR) vaccine.

‘I was shocked’

Later, Hassan said, a local doctor challenged her to do her own research on Wakefield, who was accused of scientific misconduct in connection with the study, and ultimately stripped of his medical license in England.

Now she is one of his biggest critics. “I was shocked when I found out people used to die [of measles],” she said. Many still do in her native Somalia, she noted, and in other in parts of the world where vaccines are not available.

“If we could all go back in time, we would have appreciated it,” she said.

Just this week, Wakefield returned to Minneapolis for a private meeting with Somali families. Members of the news media were barred from Wednesday’s gathering, which reportedly drew only about a half-dozen Somali parents.

But one of the organizers, Patti Carroll of Shoreview, said she doesn’t believe parents are worried about the measles outbreak.

“They’d rather have them get the measles than deal with the effects of unsafe vaccines,” said Carroll, a volunteer with Generation Rescue, an autism advocacy group.

Health officials warn that measles is highly contagious and extremely dangerous. So far, six people have been hospitalized in the current outbreak, most of them young children. All are said to be recovering.

This week, Hassan circulated an e-mail inviting members of the Somali community to tonight’s forum at the Brian Coyle Center in Minneapolis.

“Our community has been misled about MMR causing autism,” she wrote. “Vaccines don’t cause autism and the benefit [outweighs] the risk.” She added: “We are very much against an unlicensed doctor to make our community his scapegoat.”

Measles in Minnesota: more cases and a visitor

26 Mar

We recently discussed here on LeftBRainRightBrain the measles outbreak in Minneapolis. Since then the number hospitalized has continued to rise. There are now six kids who have been hospitalized. As of March 23rd (two days ago) there were 11 cases of measles total. Why bring this up on an autism-focus blog? Because the outbreak has ties to the autism communities. One of the questions that has arisen in recent years is whether there are more autistic children amongst the Somalis in Minneapolis than amongst other groups. In response to the news that a larger fraction of young Somaili children were in the autism classes, Generation Rescue reached out to the Somali community. Andrew Wakefield reached out to the Somali community. Fear of autism appears to be behind a possible low vaccination rate amongst Somali children. And, now, Somali children have higher incidence of measles in this outbreak.

According to the MDH: “Four of the cases were too young to receive vaccine, five were of age but were not vaccinated, and two have unknown vaccine status”. Of those unvaccinated, I believe at least three were from the Somali community.

In response to the measles outbreak, Andrew Wakefield is once again speaking with the Somali community there. In Anti-vaccine doctor meets with Somalis, the Minneapolis Star Tribune reports:

Dr. Andrew Wakefield, a controversial British doctor whose research purported to link vaccines to autism, met privately with a gathering of Somali parents in Minneapolis on Wednesday night.

and,

Wakefield, who arrived amid the city’s first measles outbreak in years, declined to answer questions about the purpose of his visit. Reporters were barred from the meeting, which was described as a “support group” for parents of autistic children.

I find this closed door discussion more than a bit ironic. Calls for transparency abound when people are inquiring about the government’s actions. But Mr. Wakefield declined to even comment for the press, much less allow access to his meeting.

The Minnesota department of Public Health has translated their measles fact sheet into Somali.

It was noted that Mr. Wakefield has discussed a study on the Somali autism prevalence question:

Patti Carroll, an organizer of Wednesday’s meeting at the Safari restaurant, said that Wakefield is helping to build support for a study about rising autism rates in the Somali community.

What wasn’t mentioned is that the National Institute of Mental Health, the Centers for Disease Control and Autism Speaks are already starting a project to study the question.

I can’t help but think back to one of the Jenny McCarthy interviews a few years back. She made a comment that maybe people will have to start dying of vaccine preventable diseases before people take her seriously. My guess is that she wasn’t expecting outbreaks that could be so directly tied to her, her organization (Generation Rescue) and one of her mentors (Andrew Wakefield).

A GPS for the Developing Human Brain

24 Mar

In his Director’s Blog, Tom Insel of NIMH has a piece “A GPS for the Developing Human Brain“. I found the piece very interesting in terms of mapping gene expression within the brain and how expression varies across the brain and across development. Given that this is a government publication, I feel that it is appropriate to copy it in total here:

One of the most surprising gaps in our knowledge about brain disorders is our ignorance about the human brain. With 100 billion neurons and a thousand times that many connections, mapping the human brain is not a trivial undertaking. Of course, early in the last century, the general regions were mapped out with numbers assigned to different cortical areas. But even a century ago, it was clear that these regional maps would not be adequate to define the location of the hundreds, perhaps thousands of different types of cells in the brain, along with all of their connections. As an analogy, we had the map of the states and, in some areas, maps of the counties, but we lacked the addresses for all the houses and we had little information about the occupants of those houses.

In 2007, the first comprehensive atlas with the regions, the houses, and the occupants was published for the mouse brain. The Allen Institute for Brain Science created an extraordinary resource for neuroscience by mapping the patterns of gene expression across the mouse brain.

Gene expression — technically known as “transcription” — is the process by which DNA is read out as RNA prior to being converted into protein. What can you do with a gene expression atlas of the mouse brain? A scientist who finds a gene associated with schizophrenia can surf this free, web-based atlas to find out where the putative schizophrenia gene is expressed in the mouse brain and what other genes are expressed in the same cells. Or a scientist who finds a specific brain area involved in learning or fear or addiction can use this atlas to identify the genes expressed uniquely in a specific part of the brain.

For these kinds of research projects, two years of laboratory work have now been collapsed to two minutes of web searching. Not surprisingly, the Allen Institute mouse brain atlas has become a daily search tool for labs across the world, a GPS for the mouse brain.

What about the human brain? The sheer complexity and size of the human brain was formidable, but the Allen Institute scientists developed tools, first with non-human primates and later with humans, to permit partial maps of gene expression in the brain. Of course, for NIMH, which focuses on developmental brain disorders, the most important achievement would be a map of the developing human brain. With the American Recovery and Reinvestment Act, we funded a major research effort on this goal, building on a unique NIMH Intramural collection of brains across the lifespan, expertise at Yale and University of Southern California, and the previous mapping success of the Allen Institute.

The results, the first “transcriptional” (gene expression) map of the developing human brain was posted last week at http://www.developinghumanbrain.org/. This initial release contains data from up to 16 different brain regions in 25 donors spanning ages from 9 weeks gestation through 40 years of age. Along with the map of gene expression, several tools are posted to allow anyone to begin to surf through this unprecedented harvest of developmental information. While there will be more to come in the near future, and the current data fall short of a comprehensive GPS, already we can see some remarkable and absolutely unexpected insights into human brain development.

For instance, about 80% of genes in the human genome are expressed in the brain. This is more than the percentage of the genome expressed in other organs and the pattern of expression within the brain is highly localized. The pattern of expression in development is markedly different than in the adult brain; so different that the fetal brain appears to be a different organ. But what is perhaps most surprising is that many of the transcripts are unique to development. That is, the same gene is spliced in novel ways to produce different RNA fragments and potentially unique proteins during development. Some have suggested that the genetic variations associated with mental disorders may selectively influence these developmental “splice variants”. (1) Now we have a catalogue of when and where these variants occur in the human brain, we can begin to compare the findings of genetics with the maps of development.

This new developmental human brain resource is a landmark. Much remains to be done, but already we have a resource that can serve the clinical neuroscience community the way the mouse atlas has served basic neuroscientists. As this atlas grows with more counties, more houses, and more occupants, we can expect a new era in our understanding of mental disorders. Indeed, a GPS for the human brain is no longer science fiction.

Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act

24 Mar

From Wrightslaw: Seeking Organizations & Informal Groups to Sign-on: Support IDEA Fairness Restoration Act.

The Council of Parent Attorneys and Advocate’s (COPAA) and the Autism National Committee (AutCom) have drafted a letter to present to legislators in support of allowing families to be reimbursed for expert witness fees when they prevail in due process hearings.

They are looking for sign-ons to the letter from formal and informal groups:

Organizational sign-ons are welcome from disability organizations and groups, formal or informal; informal networks of attorneys and advocates and others; parent support groups; health, civil rights, and other related organizations or groups; nonprofit organizations, public interest law firms and organizations, associations, and any other supportive groups.

Here is the letter:

We, the undersigned organizations, urge Congress to pass the IDEA Fairness Restoration Act, S.613 and H.R. 1208. The bill would overturn the Supreme Court decision in Arlington Central School District v. Murphy by restoring Congress’ original intent in enacting the Handicapped Children’s Protection Act of 1986 that parents who prevail in administrative hearings and court actions be allowed to recover expert witness fees as well as attorneys’ fees.

Under the IDEA, schools are required to provide a free appropriate public education (FAPE) to children with disabilities. Congress recognized long ago that there will be times when parents and school districts differ as to what constitutes FAPE and that in those situations parents should be allowed to seek a hearing before an impartial administrative hearing officer. In those hearings parents must provide testimony from such expert witnesses as psychologists, doctors, therapists, and educational experts to prove that FAPE was not provided to their children. However, nearly 36% of children with disabilities live in families earning less than $25,000 a year; over two-thirds in families earn less than $50,000 a year. For both low and middle income parents, the right to due process is real only if the fees of these experts are shifted when they prevail.

Prevailing plaintiffs in ADA, Title VII, and other civil rights have the statutory right to recover expert witness fees. We ask Congress to take action to restore its original intent and provide this same right to parents who prevail in IDEA cases.

Nor would this bill be burdensome for school districts. Parents proceed to litigation only as a last resort. In 2003, the GAO reported that there were only 5 hearings per 10,000 special education students. Only parents who prevail could recover fees; parents who do not prevail could not.

We ask Congress to pass the IDEA Fairness Restoration Act, S. 613 and H.R. 1208. Restoring Congress’ original intent the Handicapped Children’s Protection Act is important to ensure that parents are not deprived of their right to due process because they cannot afford expert witnesses. Thank you very much for your support.

Please contact either of us if you have questions. Thank you very much for your support.

Jessica Butler, Congressional Affairs Coordinator, Autism National Committee (jessica@jnba.net)
Bob Berlow, Co-chair, COPAA Government Relations Committee (govrelations@copaa.org)

Please don’t hesitate to SHARE THIS with others.

To sign-on you must email your name, the name of your organization or group, and your city, state, zip code, and email address to – jessica@jnba.net (Jessica Butler, Congressional Affairs Coordinator, Autism National Committee)

Congress considers whether parents should be reimbursed for expert witnesses in special ed cases

23 Mar

Families in dispute with their school districts over special education have the right to file for a due process hearing. Most of the time, these disputes are settled in mediation. A few cases go to hearing. These hearings are expensive for both sides, and a major cost to families can result from expert witnesses: people like psychologists or speech/language pathologists who testify to the unique needs of the child in question.

In 2006 the Supreme Court of the United States heard a case on whether school districts were required to reimburse families for expert witnesses. In Arlington v. Murphy the Court ruled that families do not have the right to be reimbursed. This is true even if the family prevails. Or, to put it another way, if a district fails to meet the needs of a child and parents are forced to not only file due process but take the issue to hearing, the parents must pay the expert witnesses–even though the district was at fault.

Congress has recently introduced bills in both he House and Senate to reinstate expert witness fee reimbursement as The IDEA Fairness Restoration Act. Previous attempts to reinstate expert fee reimbursements have failed, but this is the first time the bill has been introduced in the House and Senate.

More on this at WrightsLaw and DisabilityScoop.

States request waivers to cut special education funding

22 Mar

From On Special Education at Education Week: Another State Requests Waiver to Cut Special Ed Spending.

It’s official: This month, Oregon asked the U.S. Department of Education to allow it to cut about $15.7 million from its special education budget and not lose the same amount of federal money for students with disabilities—a double hit

The US Federal Government assists schools with special education by contributing about 17% of the costs. If a state were to reduce special education funding, as Oregon is planning, the Federal Government’s contribution would also go down. Say that Oregon cuts $15.7M in special education funding. They would also lose about $2.7M in Federal support. Oregon has asked that they be allowed to cut special ed funding and still keep the Federal contribution.

Follow the link that On Special Education supplied, and you will see the waiver applications from Kansas, Iowa, South Carolina, West Virginia, New Jersey, Alabama, and Oregon.

Beyond the “double financial hit” aspect, the law requires states to maintain a constant or increasing level of Special Education funding. From one of the letters granting a waiver:

Under 20 U.S.C. § 1412(a)(18)(A) and 34 C.F.R. § 300.163(a), a State must not reduce the amount of State financial support for special education and related services for children with disabilities, or made available because of the excess costs of educating those children, below the amount of that support for the preceding fiscal year.

The Oregon waiver application starts with this paragraph:

The State of Oregon respectfully requests that OSEP grant a waiver of the requirement that Oregon maintain state financial support for special education and related services for the 2010-11 school year. This authority to grant the requested waiver is provided by statute and regulation [20 U.S.C. §1412(a)(18)(C); 34 C.F.R. § 300.163(c)(1)]. It would be equitable to grant this waiver because of the “exceptional or uncontrollable circumstances” due to the “precipitous and unforeseen decline” in Oregon’s financial resources. The State of Oregon respectfully requests a waiver in the amount of $15,674,579 for 2010-11.

New Jersey cut about $52M in special education funding and requested a waiver last September. West Virgina requested a waiver last year and it was granted. Iowa requested a waiver and it was granted.

Certainly we don’t want states to lose even more money for Special Education, but part of the Federal contribution is to encourage states to keep from cutting Special Education.

Autism Science Foundation announces Pre & Post Doctoral Training Fellowships

21 Mar

The Autism Science Foundation has announced their pre-doctoral and post doctoral fellowships for this year. The press release is quoted below.

This is an area of research funding I approve of–supporting new researchers. The more new, good people we can pull into the field, the better off autism research will be in the long term.

Pre & Post Doctoral Training Fellowships Announced

(March 21, 2011-New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to funding autism research, today announced the recipients of its annual pre and post doctoral fellowships. In all, $220,000 in grants will be awarded to student/mentor teams conducting research in autism interventions, early diagnosis, biomarkers, and animal models. This funding level represents a 22% increase over last year’s training fellowship grants.

“We are thrilled to be increasing our funding in only our second year of operations, and to be supporting such high quality grants”, said Autism Science Foundation co-founder Karen London. “Outstanding research is the greatest gift we can offer our families. We are so grateful to all our donors and volunteers who have come together to support autism research.”

The following new projects have been selected for funding:

Post Doctoral Fellowships:

* Jill Locke/David Mandell: University of Pennsylvania
Implementing Evidence-Based Social Skills Interventions in Public School Settings
* Portia McCoy/Ben Philpot: University of North Carolina
Ube3a Requirements for Structural Plasticity of Synapses
* Haley Speed/Craig Powell: UT Southwestern University
Identifying Impairments in Synaptic Connectivity in Mouse Models of ASD
* Elena Tenenbaum/Stephen Sheinkopf: Women & Infants Hospital andBrown University
Attentional Distribution and Word Learning in Children with Autism

Pre-Doctoral Fellowships:

* Jessica Bradshaw/Robert Koegel: University of California at Santa Barbara
Prelinguistic Symptoms of Autism Spectrum Disorders in Infancy
* Christie Buchovecky/Monica Justice: Baylor College of Medicine
Identifying Genetic Modifiers of Rett Syndrome in the Mouse

Read more about these studies.

The Autism Science Foundation is a 501(c)3 public charity that provides funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Learn more at http://www.autismsciencefoundation.org

disclaimer–I have accepted support from ASF to attend IMFAR 2011./

Jake Crosby abuses man with psychiatric disorder

21 Mar

Today at Age of Autism Jake Crosby – man who has a psychiatric disorder himself – took it upon himself to disparage a man who also has a psychiatric disorder and encourage the Age of Autism readers to do the same:

Seth Mnookin – a former drug dealer and burglar who bit a police officer…

Geez oh Peet! Offit picks the lousiest spokespeople, doesn’t he? First Amanda “don’t listen to me” Peet and now this former heroin addict.

Starting on Page 191, the DSM IV diagnoses Substance-Related Disorders:

The Substance-Related Disorders include disorders related to the taking of a drug of abuse (including alcohol), to the side effects of a medication, and to toxin exposure. In this manual, the term substance can refer to a drug of abuse, a medication, or a toxin. The substances discussed in this section are grouped into 11 classes: alcohol; amphetamine or similarly acting sympathomimetics; caffeine; cannabis; cocaine; hallucinogens; inhalants; nicotine; opioids; p hencyclidine (PCP) or similarly acting arylcyclohexylamines; and sedatives, hypnotics, or anxiolytics. Although these 11 classes appear in alphabetical order, the follow ing classes share similar features: alcohol shares features with the sedatives, hypnotics, and anxiolytics; and cocaine shares features with amphetamines or similarly acting sympathomimetics. Also included in this section are Polysubstance Dependence and Other or Unknown Substance-Related Disorders (which include most disorders related to medications or toxins).

What Crosby has done is no different than someone coming up to him and abusing him based on his autism. Its shameful and deeply offensive. This is the 21st Century and Crosby has taken it upon himself to ridicule and abuse a man who has the strength of character to overcome his personal demons and carve out a successful career for himself as an exemplary investigative journalist. If Age of Autism need proof of the calibre of his work they should take a look at the reviews The Panic Virus garnered and compare them to the calibre of the 5 reviews Dan Olmsted could round up for Age of Autism – The Book.

Age of Autism has revealed its truly nasty and shallow depths by abusing a man with a psychiatric disorder. Maybe they should think twice before attacking someone based solely or partly on their disorders in order to whip up negativity in their cult members and start to realise the consequences of their actions. I would wish shame on them but they’ve proven time and time again that shame and self-reflection is an alien emotion to them.

David Kirby shows he’s been out of the loop

19 Mar

David Kirby is back on the Huffington Post blogging about vaccines and autism in a piece titled CDC to Study Vaccines and Autism.

The CDC move comes one month after the federal government’s leading autism body, the Interagency Autism Coordinating Committee (IACC) announced a shift in research priorities toward environmental triggers for autism, which the IACC said could include toxins, biological agents and “adverse events following immunization.”

In case we didn’t read that paragraph, he repeats himself later:

Meanwhile, the IACC has signaled a major shift in research priorities into the causes of autism, moving away from purely genetic studies in favor of investigating the interaction between genes and environmental factors, which it said could include toxins, biological agents and vaccines.

What shift? Funding levels for environmental causation and gene-environment interactions have outpaced funding for purely genetic research for the past few years.

Mr. Kirby, I’d like to say you’d know that if you read LeftBrainRightBrain instead of the blogs and websites which claim to be asking for more research into environmental research. But I have to ask, are you really out of the loop, or does it just make a better story to claim these fake “shifts”?

Here are a few posts you might want to read, Mr. Kirby:

US proposes $154M in new autism research projects

US plan for autism research: focus on environmental causation re-emphasized

Here’s one from over a year ago:

IACC calls for $175 million in autism and the environment research

Is his post a misconception because he’s been out of the loop on another book project? No. Here’s Mr. Kirby’s introductory paragraph:

The Centers for Disease Control and Prevention wants to study autism as a possible clinical outcome of immunization, as part of its newly adopted 5-year research agenda for vaccine safety, the agency said on its website.

Take a look at the CDC research agenda that Mr. Kirby links to. It includes:

In 2004, the IOM concluded that the evidence “favors rejection of a causal relationship” between MMR vaccine and autism and thimerosal-containing vaccines and autism (IOM, 2004).
• VSD has completed a thimerosal and autism case-control study. The chief goal was to determine if exposure to thimerosal in infancy (through 7 months of age) or in-utero is related to development of autism. A secondary objective was to evaluate whether exposure to thimerosal in infancy is related to a subclass of autism predominately associated with regression. The manuscript Prenatal and Infant Exposure to Thimerosal From Vaccines and Immunoglobulins and Risk of Autism (Pediatrics) by Price CS et al. showed that prenatal and early-life exposure to ethylmercury from thimerosal-containing vaccines and immunoglobulin preparations was not related to increased risk for Autistic Spectrum Disorders (Price CS et al, Pediatrics 2010).
• CDC funded a study in Italy comparing children who previously received thimerosal-containing or non-thimerosal-containing DTaP vaccines (Tozzi AE, 2009).
• A VSD study was completed on early thimerosal exposure and neuropsychological outcomes at 7 to 10 years (Thompson WW et al, 2007). Another study using the public dataset was published (Smith MJ, WoodsCR. Pediatrics 2010).

So, the CDC has already been studying autism as a possible outcome of vaccines. In fact, they’ve already completed it and published it: “VSD has completed a thimerosal and autism case-control study.”

And let’s not forget all the other studies of the past 10 years on MMR, and those on thimerosal. We won’t. Apparently David Kirby has. It’s “new” that the CDC would consider vaccines and autism.

And, noting that the IACC federal autism panel “suggested several studies including vaccinated versus unvaccinated children to determine if there are differences in health outcomes,” the CDC said it will convene an “external expert committee to offer guidance on the feasibility of conducting such studies and additional studies related to the immunization schedule, including studies that may indicate if multiple vaccinations increase risk for immune system disorders.”

Germany has already done one of those studies. Kev discussed it here on LeftBrainRightBrain just recently as Vaccinated Children Not at Higher Risk of Infections or Allergic Diseases, Study Suggests. The results were that people are better off vaccinated. Fewer infectious disease. No increased risk of asthma or other problems (the study size, with about 18,000 people, was too small to study autism).

Sorry if I appear to have little patience for David Kirby. It’s true. I don’t have much patience for him. He’s framed his piece in a manner which misleads. And he has no excuse.

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