Archive | Autism RSS feed for this section

Are more rich kids autistic?

28 Aug

That is the question researchers at the University of Wisconsin studied in a recent paper in the Wisconsin Medical Journal: Socioeconomic Disparity in the Prevalence of Autism Spectrum Disorder in Wisconsin.

The brief report looked at the data used in the 2002 CDC prevalence study that reported 1 in 150 children are diagnosed with autism in the U.S.. The data are collected through the Autism and Developmental Disabilities Monitoring (ADDM) Network.

Here is one of the tables:

Prevalence vs SES for Wisconsin

Prevalence vs SES for Wisconsin

What’s it say? Basically, if you are wealthy or have a high level of education, your kid is much more likely to be diagnosed autistic.

The authors are pretty limited in what they can say. They didn’t look into the “why”. That they did say was this:

Although the positive association with SES reported here is consistent with early observations of autism and some previous epidemiologic studies,2-3,5 the reason for this association and the potential role of SES differences in access to health and educational services for ASD cannot be determined from the data available.

and:

Further research is also needed to examine whether the association reported in this paper is a result of differential access to health services, other sources of ascertainment bias, or SES differences in the risk of developing ASD.

Do I think that kids of wealthy parents are really 2.5 times more likely to *be* autistic? No. But, are they more likely to *get* a diagnosis? It sure looks like it.

I am not surprised. There are very large disparities by geography (state to state, rural vs. urban) and by ethnicity in much of the CDC’s ADDM network data. I was surprised that the disparity by socio-economic-status was so large.

Univeristy of Miami to get $20M for autism research

27 Aug

The John P. Hussman Foundation has pledged $20 million to the University of Miami’s Institute of Human Genomics.

Mr. Hussman has supporting and personally working with Dr. Margaret Pericak-Vance and Dr. Jeffery Vance of the Institute of Human Genomics at the University of Miami. The Institute will be renamed the John P. Hussman Institute for Human Genomics.

The research goal of the Institute is to “… discover the genetic factors that contribute to the cause of autism and related disorders.”

Mr. Hussman runs the Hussman Funds. He is also the father of a 15 year old autistic son.

Mr Hussman is quoted as saying:

“I don’t expect that autism will be cured,” Hussman said. “And to some extent, I’m uncomfortable with the notion of a cure because it refers to the desire of people with autism to be something different. But it could help with intervention when something starts to go wrong.”

also,

“I am convinced that the research under way at the institute will lead to further breakthroughs in our knowledge of autism,” Hussman said in a telephone interview. “Simply put, I don’t expect that autism will be cured, but I do expect that this research will lead to interventions that will significantly improve the lives of children and adults with autism.”

Are autistic kids less healthy?

27 Aug

This is a question that comes up a lot: is the general health of autistic children lower than, say, typically developing children or children with other developmental delays?

Actually, few people make the comparison to other developmental delays, but it is worth doing.

The National Survey of Children’s Health gives us some information to address this question. It is not a perfect set of data to study, but it will give us an idea.

Parents were asked to grade their child’s health with the question “In general, how would you describe [S.C.]’s health? Would you say [his/her] health is excellent, very good, good, fair, or poor?”

The overall population showed the following distribution:

Excellent: 64.9%
very good: 22.9%
good: 9.8%
fair: 2.0%
poor: 0.3%

So, in general, American kids are pretty healthy.

How about autistic kids*? Here’s the distribution:

Excellent: 34.3%
very good: 29.5%
good: 23.0%
fair: 8.8%
poor: 4.3%

That is a big difference from the general population. From 65% “excellent” down to 34% for autistic kids. We don’t know how parents considered “autism” as being in “poor health”, though. In other words, parents could consider their child to not be in “excellent health” just because he/she is autistic. I throw that out for consideration, not as an explanation of these numbers. We just don’t know if this is a factor.

A clearer indication that autistic may have more medical health problems (at least to my eye) is the fact that “poor” is 4.3% for autistic kids, vs. 0.3% for their typical peers. I could be wrong, but I don’t see many parents listing their child’s health as “poor” just because the kids are autistic. I could see parents downgrading from “excellent” to “very good”, for example.

Compare the autistic group to children “who currently have developmental delay problems”. Note that this group includes many of the autistic kids. Here is the distribution for the kids with developmental delays:

Excellent: 30.1%
very good: 29.5%
good: 25.6%
fair: 10.9%
poor: 3.8%

To my eye, autistic kids and developmentally delayed kids are the same in terms of health grades.

In other words: yes, the general health of autistic kids looks like it is worse than the general population. However, the general health of autistic kids looks like it is basically the same as that for all kids with developmental delays.

To answer the obvious complaints:

1) I am not saying that autistic kids do not have health problems. Being autistic does not make one immune to serious health problems. If anything, autistic kids do have lower health grades than typical kids. However, autistic kids do not have lower health grades than developmentally delayed kids.

2) One (probably me) should look at health grades of autistic children who are rated as being more “severe” and see if the general health grades are lower for that subgroup.

3) This is not definitive data, but a response to a survey. However, within the limitations of a survey, I think these data are interesting to consider.

*Autistic kids being children whose parents told the survey team that the child currently has autism or an ASD.

U.S. Senator Ted Kennedy passes

27 Aug

Senator Ted Kennedy has passed away.

The Kennedy family is well known worldwide. He was well known in his own right as a powerful senator for over 40 years (third longest tenure in the U.S. senate in history). His family has included many prominent politicians and citizens.

The Kennedy family has a history of supporting disability rights issues. Ted Kennedy is responsible for much of that.

Here is the family’s statement. They have my condolences.

“Edward M. Kennedy—the husband, father, grandfather, brother and uncle we loved so deeply—died late Tuesday night at home in Hyannis Port. We’ve lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism, and perseverance will live on in our hearts forever. We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice, fairness and opportunity for all. He loved this country and devoted his life to serving it. He always believed that our best days were still ahead, but it’s hard to imagine any of them without him.”

Here is the section on disability from Senator Kennedy’s website. It is quite extensive.

Disability Rights

In 1978, Senator Kennedy cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability. Two years later, Kennedy cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution. This law grew out of increased awareness of the unhealthy and inhumane living conditions and treatment of many people within government institutions, such as the case of the Willowbrook State School for the Mentally Retarded, which came to the forefront in 1972. Beyond assuring humane living conditions and basic rights to such individuals, the law details its protection of the religious practice of the institutionalized.

Senator Kennedy cosponsored legislation in 1984 requiring polling stations to provide physical accessibility for disabled and elderly people on federal election days. If this is not possible, polling places are required to provide alternative voting methods so that individuals in such a situation are able to cast a ballot. The law also holds that polling places must make registration and voting aids available for the elderly and people with disabilities. In 1986, Kennedy was an original cosponsor of the Air Carrier Access Act. This law required that facilities and services be provided to people with disabilities traveling by air. Accessibility requirements applied not only to the aircrafts but also to airports and terminals.

In 1988, Kennedy introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children. By expanding the law, the FHAA prohibited discrimination towards people with disabilities in the sale or rental of housing and in the terms, facilities and services provided. It also sets certain guidelines for remodeling and necessary modifications to a residence for both the landlord and the tenant.

On July 26, 1990, the Americans with Disabilities Act was enacted into law. Introduced by Senators Kennedy and Harkin, the ADA prohibited discrimination by a covered entity (employer, employment agency, labor organization, etc) against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement, training, etc. The law declared that no qualified individual with a disability shall be excluded from the participation in, denied the benefits of, or subjected to discrimination by a public entity, and also required accessible rail transportation and telephone services for persons with speech or hearing impairments.

In response the alarming level and increase in the victimization and violence against people with disabilities, Congress passed the Crime Victims and Disabilities Awareness Act of 1998. Kennedy cosponsored the bill, which directed the Attorney General to conduct a study on the issue and to include specific details regarding the crimes against people with disabilities and to include them in the National Crime Victimization Survey, an annual publication. In 2004, Kennedy was an original cosponsor of the Assistive Technology Act, which supported states in an effort to sustain and strengthen the capacity to meet the assistive technology needs of individuals. In addition, it would focus funding on investments in technology that could benefit those living with disabilities. Millions of Americans experience severe disabilities that affect their ability to see, hear, communicate, walk, or perform other basic life functions. This should not preclude any individual from enjoying full integration in the economic, political, social, and educational activities embedded in American life.

Vocational Rehabilitation and Employment

Senator Kennedy was a strong supporter of the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978. These amendments included a number of very important steps in disabilities legislation. It established a functional definition of developmental disability, created the National Council on the Handicapped and the National Institute of Handicapped Research, set a funding minimum for protection and advocacy services and authorized a grant for independent living services and opportunities for people with disabilities.

In 1982, Kennedy was one of the main cosponsors of the Job Training Partnership Act, which was designed to break down some of the barriers facing “economically disadvantaged” individuals and among them people with disabilities. Kennedy made sure to include provisions stating that people could not be excluded from the training program and the advantages it provides based on a disability or other classification. Four years later, Kennedy and Senator Quayle introduced amendments to the Act that afforded people with disabilities special consideration in the awarding of discretionary grants within this training program through the provisions of these amendments.

In 1986, Kennedy cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act. People working despite severe disabilities became eligible for special status to receive SSI benefits and Medicaid coverage. This special status was valid unless the impairment went away or their earnings exceeded an amount that zeroed out their cash benefits.

In 1999, Kennedy was the primary sponsor with Senator Jeffords of the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

Assistive Technology

Senator Kennedy was an original cosponsor of legislation that provided funding to all 50 states in order to raise awareness about the potential of assistive technology to significantly improve the lives of people of all ages with disabilities. It also aimed to facilitate a coordinated effort amongst state agencies to provide and encourage the use of assistive technology for individuals with disabilities. Senator Kennedy cosponsored reauthorizations of the Act in 1994, 1998, and 2004.

Education

Senator Kennedy was an original cosponsor of the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities, regardless of their severity, in all states.

Kennedy was an original cosponsor of the Handicapped Children’s Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act. That same year, Kennedy cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families. It also sought to provide and promote preschool programs for children ages 3 to 5 with disabilities.

In 1990, Kennedy was an original cosponsor of a bill that changed the name of the Education of the Handicapped Act to IDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology. In 1997, Kennedy was an original cosponsor of amendments that consolidated the original 9 subchapters of IDEA into 4 subchapters. Among the other changes were the inclusion of special education in state and district-wide assessments, the promotion of mediation as an option to disputes between teachers and parents of children with disabilities, a provision that special education students be disciplined in the same way as other students, the continuation of services to adult inmates with disabilities who were eligible for IDEA prior to their incarceration, and the requirement of charter schools to meet the needs of children with disabilities and to receive IDEA funds from district schools.

In 2004, Kennedy was the sponsor and lead negotiator of the reauthorization of the IDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

Health Care

In 1982, Kennedy was an original cosponsor of legislation that allowed for states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

In 1990, Kennedy, along with Senator Hatch, introduced the groundbreaking Ryan White CARE Act, which provided emergency relief to thirteen cities hardest hit by the AIDS epidemic, and also provided substantial assistance to all states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care. Other services included in the bill were drug treatment, dental care, substance abuse treatment, and outpatient mental health care.

In 1991, Kennedy sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration. Specifically, it separated the previously combined treatment and research branches of the department, which improved the capacity to effectively address both the prevention and treatment of substance abuse and mental health.

The Ryan White CARE Act reauthorization of 2000 reaffirmed Senator Kennedy’s commitment to providing access for persons with HIV disease to life-sustaining medications, medical care and other essential services. The Act authorized nearly $9 billion in HIV/AIDS services over the next five years.

In 2006, Kennedy won a 5-year-long battle to pass the bipartisan Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

In 2007, Senator Kennedy reauthorized the Ryan White Care Act of 1990. The reauthorization focused on quality of life issues, new and emerging therapies, and ensuring that funding for programs followed the people affected by the disease. Having over 15 years worth of information and recognizing that the disease had changed significantly, the focus was placed on prevention and issues of chronic care. It also acknowledged that the demographics had changed and the disease was now evident beyond the cities and in rural areas as well. Drug treatments had also advanced and people living with HIV were staying alive 20 to 30 years beyond their day of diagnosis.

In 2008, after more than 10 years of effort, Senator Kennedy championed historic legislation to reform the inequities in the way mental health and substance use disorders are treated by the insurance industry. This legislation, co-sponsored by Senator Domenici, assured individuals living with mental health and substance abuse issues that there mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements. This means that co-pays, out of pocket expenses, and deductibles cannot be treated differently than they way medical-surgical is treated. This legislation assured equity for 113 million Americans.

In July of 2009, Senator Kennedy succeeded in having the CLASS Act be included in the text of the Affordable Health Choices Act that was passed out of the HELP Committee. This bill aims to provide the elderly and disabled with a daily cash benefit that allows them to purchase the services and supports they need to remain in and be productive member of one’s community.

Developmental Disabilities

In 1975, Senator Kennedy cosponsored legislation to create a “bill of rights” for people with developmental disabilities. The bill also provided funding for services for people with this type of disability, supplemented funding for affiliated university facilities and created state-based systems of protection and advocacy groups in all 50 states. Kennedy was an original cosponsor of the reauthorization in 1987, which updated the language of the 1975 law. It also gave greater independence to the State Planning Councils, fortified the authority of the state-based protection and advocacy systems in investigations into abuse and neglect, and established separate line items for funding and training in university affiliated programs.

Huffington Post uses erroneous data to promote autism epidemic

26 Aug

correction:

As noted in the comments below, Mr. Kirby appears to be basing argument suggesting that the Hepatitis B vaccine could have caused autism on ADDM data, not on the NSCH dataset, as I assumed.

A recent blog post on the Huffington Post contains serious errors and should be edited or pulled.  At the very least a public acknowledgment of the error must be made.

Using data from the recently published 2007 National Survey of Children’s Health to estimate autism prevalence, a Huffington Post blogger (David Kirby) attempted to draw a connection between the Hepatitis B vaccine and an “explosion” of autism . Here is what he wrote:

If there is an environmental component to autism, hopefully scientists will want to know which exposures might have increased between, say, 1992 and 1996.

One possible answer is the Hepatitis B vaccine, (which also contained 25 micrograms of mercury containing thimerosal).

Introduced in 1991, it was the first vaccine ever given on a population basis to newborn babies (within the first three hours after delivery) in human history.

But according to the CDC’s National Immunization Survey (which also includes parental telephone interviews), only 8% of infant children received the Hep B vaccine in 1992, when that birth cohort showed an ASD rate of 60-per-10,000.

By 1994, the number of children receiving Hep B vaccine had reached just 27% — and the cohort showed an ASD rate of 66-per-10,000.

But the Hep B coverage rate had risen to 82% by 1996, when that cohort’s ASD rate exploded to around 100-per-10,000.

Correlation, obviously, does not equal causation. And no one is suggesting that Hepatitis B vaccine is the singular “cause” of autism. But the uptake rate of that particular immunization is at least one environmental factor that did demonstrably change during the period in question.

Emphasis is mine. I emphasized the data which  are the data that are incorrect.

The analysis is simple. Here are the actual results compared to what Mr. Kirby misreported:

1992 “birth cohort*”:
102 per 10,000 (not 60 per 10,000 as on HuffPo)

1994 “birth cohort*”:
113 per 10,000 (not 66 per 10,000 as on HuffPo)

1996 “birth cohort*”:
111 per 10,000 (close to the “around” 100 per 10,000 quoted).

Or, to put it very simply: Mr. Kirby’s statement that there was an “explosion” in the autism rates is incorrect. The evidence that the introduction of the Hepatitis B vaccine is somehow related to the increase in autism rates is false.

That entire statement isn’t even a misinterpretation–it is just simply, demonstrably, false.

Unfortunately, this isn’t Mr. Kirby’s first clear and serious error. He has a history of mistakes. Unfortunately, he doesn’t have a history of correcting his mistakes. Consider these examples:

In June 2008, epiwonk publish a blog post “David Kirby: HuffPost Report on CDC’s Vaccine Safety Datalink Uninformative and Completely Misleading“, demonstrating clear errors in Mr. Kirby’s post “CDC: Vaccine Study Design “Uninformative and Potentially Misleading“”.

The errors were serious enough that Mr. Kirby rewrote his blog post as CDC: Vaccine Study Used Flawed Methods. This included the following introduction:

NOTE: My original post on this topic mischaracterized the 2003 CDC vaccine investigation as an “Ecological Study,” which it was not. I am reposting this piece to reflect that information accurately, but also to point out that many of the weaknesses identified in the CDC’s data and methods apply to the published 2003 “retrospective cohort” study, as much as they do to any future “ecological” ones. I regret and apologize for the error.

Mr. Kirby “regrets” and “apologizes” for the error. Yet his original, erroneous blog post is still on the Huffington Post website. He never took it down. He didn’t even add an apology or correction note to the piece. Anyone following a link to it would have no idea that even the author acknowledges the serious flaws in that piece.

It is also worth noting that the “corrected” version of Mr. Kirby’s blog post was also in error. Again, as noted by epiwonk, this time in his piece “David Kirby HuffPost, Take 2: My Original Story was Flawed, So Here’s A Second (”Corrected”) Story That’s Still Flawed, But I Hope I Can Snow You Under Again This Time…”

Mr. Kirby compounded this error when he recreated it in his first “congressional briefing”, September 2008. Mr. Kirby misquoted a report by the National Institute of Enviornmental Health Sciences, and he was caught by a knowledgeable staffer.

Again, Mr. Kirbty has failed to correct his error.  He posted his power point presentation to his website, but without any acknowledgment of the error on page 6.  In the transcript for this talk, he only states, “NOTE: This statement omits important details of the CDC response” and sends you to other sites “For a more detailed explanation”. The “transcript” makes no reference to the exchange between Mr. Kirby and the congressional staffer, nor does it acknowledge that the omission was critical to the point being made. The transcript is noted as being a “Rush transcription by Nancy Hokkanen”. Being in a rush is not an excuse to leave important flaws unexplained.

Math errors are also not new to Mr. Kirby. In May 2008, Mr. Kirby wrote a piece analyzing data from Scotland. In doing so, Mr. Kirby misread a graph resulting in a factor of 10 error in a key piece of information (he misread a bar graph . After his error was blogged, Mr. Kirby corrected his Huffington Post piece. What he didn’t do, and he should have, was to note in the blog piece that he made the error and corrected it.

Mr. Kirby placed his Scotland data post in two sites: Huffington Post and the Age of Autism blog. In yet another odd move by Mr. Kirby, he left the original version of his post, complete with the factor of 10 error, on the Age of Autism blog (it still has 34,000 instead of 3,400). As noted above, Mr. Kirby obviously knows about the error, since he corrected it on the Huffington Post.

Since he clearly knew that his post on the Age of Autism blog had a big error, why didn’t he make a correction (with acknowledgment of the error) there?

Mr. Kirby had a bit of a problem with understanding the difference between Change.Org Change.Gov (the Obama transition team’s website) and Change.Org (a website that hosts blogs on important topics, including autism) (also noted here and here) He made a clear correction on the Huffington Post. However, his post on the Age of Autism blog just disappeared without a comment.

But let’s get back to the present. Mr. Kirby has blogged erroneous data and used this to show a false correlation between the Hepatitis B vaccine introduction and the rise in autism rates.

In case anyone is thinking, “are you sure you checked your own numbers, Sullivan?” The answer is yes. I double checked. I asked a frequent commenter on this blog, Dawn, to check my numbers. Another commenter independently collected and graphed the NCSH data as well. No evidence for an “explosion” of autism rates. Take a look at the graph. Mr. Kirby claimed that the 2007 survey data showed autism rates of about 60/10,000 for kids aged 13 and 15. There are no rates below 80 per 10,000 for the kids in those age ranges in that dataset.

So here we have a man with a history of errors, and with a history of failing to adequately correct his errors. He now has a new, big, obvious error. This error is likely the most serious of those listed here, in my opinion. Mr. Kirby has convinced people that the Hepatitis B vaccine could be causing autism. That was a serious accusation, and it was wrong. The question before us now is this: what will Mr. Kirby do now that he knows he made a mistake?

I’m very curious about that, so I’ve emailed Mr. Kirby and one of the editors at the Huffington Post with this information. I’ll let you all know what I hear back.

*note: the NSCH data are not given as “birth cohorts”. Instead, they are given by age. The survey was performed in 2007 and 2008. So, the 15 year old age group is roughly the “1992 birth cohort”. Likewise, 13 year olds are the 1994 “cohort” and 11 year olds are the 1996 “cohort”.

EDIT: Note that I too have a problem with keeping Change.Org and Change.Gov separate. This correction was made after the post was published.

Physician’s Warranty of Vaccine Safety

25 Aug

There is an amazing document to be found on the internet: the “Physicians Warranty of Vaccine Safety”.

My take on this? It isn’t a real method of communicating one’s possible concerns about vaccines with one’s doctor. Instead, it is appears to be intended to sway parents away from vaccinating their children. They read this and go “Oh No!” and probably never even show it to their pediatricians.

The document is long and asks doctors to provide huge amounts of information supporting the idea that vaccines are safe and effective. Again, my view is that the document is more about getting parents to question vaccines.

The “Warranty” includes a scary list of vaccine “fillers” including the ever not-present “antifreeze”. It brings up the SV40 scare, including the nonsensical statement, “I hereby warrant that the vaccines I employ in my practice do not contain SV 40 or any other live viruses.” I guess whoever wrote the “Physician’s Warranty of Vaccine Safety” never heard of he MMR vaccine, with its live viruses and all. How can a physician warrant that MMR doesn’t include “live viruses”?

In the end the objective of this document appears to be: give this to your doctor and when he/she refuses to sign it, take that as proof that vaccines are not safe.

To insure that this happens, the Physicians Warranty of Vaccine Safety includes a killer clause:

Regardless of the legal entity under which I normally practice medicine, I am issuing this statement in both my business and individual capacities and hereby waive any statutory, Common Law, Constitutional, UCC, international treaty, and any other legal immunities from liability lawsuits in the instant case. I issue this document of my own free will after consultation with competent legal counsel whose name is __________________________________________, an attorney admitted to the Bar in the State of ___________________________.
________________________(Name of Attending Physician)
________________________ L.S. (Signature of Attending Physician)

Yep. The doctor is supposed to waive all legal protection from liability. He/she is supposed to put his/her business and personal assets behind this.

Make a document that says, “I want a glass of water…oh, by the way, please waive all your legal rights before doing so”. See if your doctor will sign it.

I’ve toyed with creating a “Physicians Warranty of Autistic Child Safety”. It would require the physician to provide all the evidence that the alternative medical therapies have been tested and proven to be beneficial and safe.

Oh, yeah, the physician would have to waive his/her immunities from liability lawsuits.

I considered asking a number of the prominent alternative medical practitioners if they would consider taking my kid on as a patient, then asking them to sign the “Physicians Warranty of Autistic Child Safety”.

But why when I already know the answer will be no?

I guess it says something about the vaccine-rejectionists that they have to resort to such cheesy measures as the “Physicians Warranty of Vaccine Safety”.

Parents’ Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment

25 Aug

If you are a parent, would you have asked for a genetic test for autism on your child before his/her diagnosis?

Consider an article in today’s issue of the journal Pediatrics, “Parents’ Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment”.

This is not about autism specifically, but about an unnamed “disease”. The researchers posed two “vignettes” and asked the parent to respond to them.

Before people heap criticism over bringing up a paper with the word “Diseases” in the title (and throughout the paper) in relation to a discussion of autism: I am not saying autism is a disease.

Here are the two vignettes:

Vignette 1: Disease With Severe Symptoms and Uncertain Time of Onset
Imagine that a genetic test exists that can identify people at increased risk for developing a certain disease for which there is currently no treatment. Disease symptoms are severe and sometimes lead to early death. People may develop symptoms either as an adult or as a child, and it is not possible to predict how old a person will be when he or she develops symptoms.
Would you want to have your child get this genetic test? Please answer for your youngest child.

And

Vignette 2: Disease With Uncertain Symptoms and Uncertain Time of Onset
Imagine that a genetic test exists that can identify people at increased risk for developing a certain disease for which there is currently no treatment. Some people with this disease will develop severe symptoms, whereas others will develop only mild symptoms. It is not possible to predict how severe the symptoms will be or at what age they will develop.
Would you want to have your child get this genetic test? Please answer for your youngest child.

I would argue that the public’s perception of autism (especially with regression) would fit into Vignette 2. I would further argue that if “disease” were replaced with “developmental disability”, it would have been an even more relevant to the public’s perception of autism.

The results surprised me. There was little if any difference in the responses to vignette 1 and vignette 2. Somehow, I figured more people would want the test for conditions that were always severe and could result in death (vignette 1).

For both vignettes, the responses were fairly evenly split into 3: “probably/definitely”, “unsure” and “probably not/definitely not”.

In other words, about 1/3 of parents say they would want a genetic test and about 1/3 say they would not, with the remainder unsure.

It would be very interesting to formulate “vignettes” that are targeted to developmental delays in general and autism in specific.

What if instead of “diseases” they asked about “developmental delays”? What if instead of “no treatment” they said, “no cure, but some therapies (e.g. speech and occupational) could be beneficial”? What would the responses be like?

The main reason this paper caught my eye is the fact that the study begs the question: if the genetic test can be performed on child, why not prenatally? What would be the difference in the responses from the parents if they were asked about prenatal testing?

Or, to put it very specifically, what if parents were told to consider a genetic test for autism?

How would the responses vary depending on the parents’ perception of autism?

Pittsburgh parents suing over alleged teacher abuse caught on video

24 Aug

The Pittsburgh station WXPI has a story, “YouTube Video Shows Teacher Slapping Autistic Boy“.

This is one of every parent’s worst nightmares–abuse behind closed doors in school. Without the video, this incident may never have come to light.

WXPI has their story video on their page, and the YouTube video is here. Sorry, I just can’t bring myself to embed it right now.

From the WXPI story:

Lori Davis is the teacher accused of hitting the boy. In the video, Davis can be heard shouting, “Stop moving your chair back. Move it, and you stay up there. I’ve had it with you.”

The criminal complaint against Davis alleges, “During the March 14, 2008 special education session, without warning or provocation, the defendant suddenly and violently struck (the victim) on the left side of the head.”

She is no longer employed by the district.

This teacher was immediately removed from the classroom and she is no longer employed with the district. We take these types of things very seriously. This is the only incident we were made aware of involving this teacher. When we found out, we immediately took action. She was removed from the classroom in June 2008.

Again, the idea of teacher or aide abuse is just a nightmare. Let’s face it, many autistic kids who can’t self-advocate or won’t be believed if they try.

Autism Speaks softens message on vaccines?

24 Aug

That is the message of a recent article by Mark Roth, Autism group softens stance on vaccines .

Autism Speaks, the nation’s largest autism advocacy group, recently made its clearest public statement yet that minimizes the link between vaccines and autism.

Mr. Roth discussed a recent statement from the Autism Speaks website by Dr. Gerri Dawson, Autism Speaks’ chief science officer. He quoted Dr. Dawson as stating:

“So … given what the scientific literature tells us today,” she says, “there is no evidence that thimerosal or the MMR vaccine cause autism” and “evidence does not support the theory that vaccines are causing an autism epidemic.”

It has been, well, interesting watching the reaction to Autism Speaks in the past few years. As recently as two years ago, the vaccines-cause-autism organizations were highly critical of Autism Speaks for ignoring the vaccine question. In fact, it seems like just this year that Autism Speaks “outed” itself as supporting the vaccines-cause-autism idea. This occurred when Alison Singer was forced to resign from Autism Speaks since she wouldn’t vote for vaccine-causation research in the IACC.

From my perspective, this “softened” stance by Autism Speaks is still a stronger message than they were sending a year ago.

This all begs the question: why did Autism Speaks soften their message?

I can speculate (and that is all this is, speculation). First, the vaccine question is highly charged. My guess is that Autism Speaks put off making a definite statement as long as possible. When Alison Singer resigned over her vote in the IACC (voting to remove vaccine research from the funded projects), Autism Speaks was forced to make their views public.

The departure of two key people, Alison Singer and Eric London over the vaccine question was not good publicity for Autism Speaks. Much more, the creation of the Autism Science Foundation gives potential donors a second viable option for an autism research charity that doesn’t fund vaccine-causation research (the first being the Simons Foundation).

What is odd about Dr. Dawson’s comments is this: If there is no evidence that thimerosal causes autism, why does Autism Speaks fund thimerosal research? Here are grants from 2008:

Differential Effects of Thimerosal on Cell Division and Apoptosis in Normal vs Autism Spectrum Disorder Cell Lines ($60,000 for one year)

and

Vulnerability phenotypes and susceptibility to environmental toxicants: from organism to mechanism ($330,000 over 3 years)

Specifically, thimerosal and other vaccine adjuvants will be studied.

(sidenote: Thimerosal isn’t an “adjuvant”)

and

Analysis of developmental interactions between Reelin haploinsufficiency, male sex, and mercury exposure ($324,340 over 3 years)

and

Etiology of Autism Risk Involving MET Gene and the Environment ($659,100 over 3 years)

The next line of experiments will examine the relationship in an even larger sample, and assess the functional effect of the MET gene polymorphism on immune cell activity, and to further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

Is Autism Speaks softening their “message” or softening their “stance” on whether vaccines and/or mercury cause autism?

Massachusetts General Hospital to add program on autistic adults

23 Aug

Massachusetts General Hospital (MGH) has received a $29 million grant to expand its pediatric autism program to a program that also gives comprehensive care to adults.

From the Boston Globe:

The hospital plans to announce Tuesday that it will receive $29 million, the fourth- largest gift in its history, from Nancy Lurie Marks and her family foundation in Wellesley, in part to add a major adult component to its pediatric autism program. The money will also allow the hospital to expand its services for children with autism, who now wait up to a year for an appointment, conduct extensive research, advocate for patients, and train physicians.

The Nancy Lurie Marks foundation describes itself as:

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

The foundation was established in 1977.

This is a great step forward. As the story notes, autistics often stay with their pediatricians well into adulthood for lack of better options.

The Boston Globe quoted Peter Bell of Autism Speaks:

Bell said that while he knows of two autism clinics in the United States that treat adults, nothing “comes close to the kind of plan Mass. General is looking at. This is tremendously exciting, and I hope others will follow.’’

I agree. This is tremendously exciting and I hope others will follow.

Autism “is treated as a childhood disorder but it’s lifelong,’’ said Clarence Schutt, director of the Wellesley foundation, which is a leading funder of autism research and whose grant to Mass. General is its largest ever.

← Older Entries
Newer Entries →