Autism Speaks accused of disability discrimination

20 Jul

Michelle Diamond of Disability Scoop has this story: Autism Speaks accused of disability discrimination. The basic story appears to be this:

A single mother, unemployed, applied for a job as a walk director for Autism Speaks. After going through a long interview process she was offered the job. The day before starting she informed Autism Speaks that she needed some accommodation one day a week because of her autistic child– such as a shifted work day or day without pay. Autism Speaks, it is alleged, refused to make an accommodation, so the mother sought and found child care for the day. However, Autism Speaks rescinded the job offer anyway according to the complaint.

Per Disability Scoop:

In her suit, Greggs is seeking compensatory and punitive damages. Nonetheless, she said the legal action is not about money but principle for her. Once a supporter of Autism Speaks, Greggs said she is outraged.

“They say one thing and they do another,” the Upper Marlboro, Md. mom said of the nonprofit. “You can’t say that you’re for helping families with children with autism and then you can’t give me an accommodation.”

When I first heard of this I thought of a previous discussion about Autism Speaks where I noted that at one level it isn’t about who works in every job at Autism Speaks, it’s about getting the job done. That may be a good idea in theory, but examples such as this one, if true, would speak to the need to have members of the community (autistics and parents) throughput the organization.

Disability Scoop has a short quote (one can’t expect a detailed response with pending litigation) from Autism Speaks:

“Autism Speaks is committed to employing parents and other family members of people with autism, as well as individuals on the spectrum,” the organization said.

Again, the full story at Disability Scoop.

By Matt Carey

Scientist Patricia Rodier, Trailblazer in Early Origins of Autism, Dies

19 Jul

Autism researcher Patricia Rodier, Professor at the University of Rochester, has died. U. Rocherster discusses this on their website as Scientist Patricia Rodier, Trailblazer in Early Origins of Autism, Dies.

Patricia Rodier, Ph.D., the first scientist to formulate and study the idea that autism can originate long before a child is born, died May 3 at Strong Memorial Hospital. She was 68.

An embryologist specializing in the nervous system, Dr. Rodier completely changed the way we think about the development of autism. While many believed that the disorder arose very late in pregnancy or in the early part of an infant’s life, Dr. Rodier’s research turned that widely held, but unproven, belief upside down. Her work established that genetic and environmental factors can also spur the development of the disorder as early as three weeks into a pregnancy, when the first cells of the nervous system start to develop.

Prof. Rodier became interested in autism relatively late in her career, but early in the modern era of autism research: 1994. She heard about a study showing a high prevalence of autism in adults who had been exposed to thalidomide prenatally. She gathered a team to investigate how autism develops early during gestation.

She wrote an article in 2000 for Scientific American, The Early Origins of Autism (also available online in full here). A lot has happened in autism research since then, but much of what she did and had to say is very relevant today. For example, she performed research using post-mortem brain tissue. She notes that the twin studies, even those available at the time, showed that more than simple inheritance was at play. She notes multiple prenatal environmental exposures which increased autism risk (thalidomide, maternal rubella infection and valproic acid). She notes how the data, even then, pointed to multiple genes being involved.

In short, many ideas which are considered “new” (e.g. multiple genes as a risk factor) or that “mainstream medicine refuses to consider” (e.g. environmental risk factors) are discussed in that 12 year old article.

Another part of Prof. Rodier’s research which became extremely relevant in the discussion of autism causation was her work on mercury exposures. From the U. Rochester webpage:

A professor in the Department of Obstetrics and Gynecology at the University of Rochester Medical Center, Dr. Rodier was also a world expert on mercury toxicity, studying how single exposures to the chemical during pregnancy influence a baby’s brain development. To this day, much of the research being done on mercury exposure and birth defects is based on Dr. Rodier’s early findings.

She was likely the one person in the world who had strong expertise in both autism development and mercury. She was called upon as a witness for the Omnibus Autism Proceeding (discussed here and here). Her expert report for the OAP is an excellent resource for people trying to make sense of the autism/mercury notion.

I exchanged emails with Prof. Rodier a few times to discuss her work. While I never actually spoke with her, the “voice” of her emails was always very kind. I found out about her passing when I was considering contacting her again recently. I wish her family well.

–by Matt Carey

Children Born to Diabetic Mothers May be More Likely to Have Intellectual Disability

18 Jul

A recent study found possible risk factors for autism in maternal conditions during pregnancy (maternal diabetes, hypertension and obesity). The study: Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders is online and a discussion can be found here at the Autism Science Foundation blog.

A study (non-autism) has been recently published indicating that diabetes might be a risk factor for intellectual disability. The risk was lower in the new study (1.10) than the previous, autism, study (1.52 risk for ASD, 2.33 odds ratio for developmental disability). Note that the sample size for diabetes in the autism study was small, resulting in large confidence intervals, so the differences may not be significant.

It is not a direct comparison between the studies, so that limits discussion. But it is interesting to see the subject of maternal diabetes and developmental disability again. It has come up before the autism study and will likely come up again.

Here is the abstract from the recent study:

Intellectual disability (ID) is a major public health condition that usually develops in utero and causes lifelong disability. Despite improvements in pregnancy and delivery care that have resulted in dramatic decreases in infant mortality rates, the incidence of ID has remained constant over the past 20 years. There may still be uncharacterized preventable causes of ID such as Diabetes Mellitus (DM). We used statewide individual level de-identified data for maternal and child pairs obtained by linking Medicaid claims, Department of Education, and Department of Disabilities and Special Needs data from 2000 to 2007 for all mother-child pairs with a minimum follow-up of 3-years post birth or until a diagnosis of ID. To ascertain the adjusted relationship between DM and ID, we fit a logistic regression model taking into account individual level clustering on mothers for multiple pregnancies using the population-averaged Generalized Estimating Equations method. Of the 162,611 eligible maternal and child pairs, 5,667 (3.49 %) of the children were diagnosed with ID between birth and 3-years of age. After adjustment for covariates the independent relationship between DM and ID was significant with odds ratio of 1.10 (1.01-1.12). On sub-analysis, patients with pre-pregnancy DM had the highest effect measure with an estimated odds ratio of 1.32 (0.84, 2.09), although this was not statistically significant. In this large cohort of mothers and children in South Carolina, we found a small but statistically significant increased risk for ID among children born to mothers with DM. Additional information about the association between maternal DM and risk of ID in children may lead to the development of effective preventive interventions on the individual and public health levels.

–by Matt Carey

Is Infertility Associated with Childhood Autism?

17 Jul

Some of the more prolific teams of autism epidemiologists are based in California. The people at Kaiser Permanente, the MIND Institute and the California Department of Public Health must account for a sizable fraction of research papers published. On thing I appreciate about these groups is that they don’t just publish the “hits”, they also “misses” (hypotheses which did not show an increased risk).

Such is the case with at least part of the recent study, Is Infertility Associated with Childhood Autism? The authors found no evidence of increased risk for ASD with infertility. They do find a possible risk “associated with infertility history and with infertility evaluations and treatment around the time of index pregnancy conception”

Here is the abstract:

Concerns persist about a possible link between infertility and risk of autism spectrum disorders (ASD). Interpretation of existing studies is limited by racial/ethnic homogeneity of study populations and other factors. Using a case-control design, we evaluated infertility history and treatment documented in medical records of members of Kaiser Permanente Northern California. Among singletons (349 cases, 1,847 controls), we found no evidence to support an increase in risk of ASD associated with infertility. Among multiple births (21 cases, 54 controls), we found an increased risk associated with infertility history and with infertility evaluations and treatment around the time of index pregnancy conception; however, small sample size and lack of detailed data on treatments preclude firm interpretation of results for multiple births.

–by Matt Carey

Chad Jackson starved to death

17 Jul

A recent news story discussed how a mother of autistic adult Chad Jackson was charged with murder. More details are now becoming available. In Autopsy: Adult son with autism starved, we learn that previous to Mr. Jackson starving to death and his doctor had ordered tests performed to determine why he was losing so much wait.

The victim’s doctor told investigators he had ordered blood tests when he became concerned about the amount of weight Chad had lost — but Yodi Jackson never had those tests done.

Yodi Jackson was Chad Jackson’s mother.

–by Matt Carey

The disabled don’t have a moral right to refuse a cure or treatment?

13 Jul

With billions of people on the planet, you gotta figure that every second someone, somewhere, is saying something which just makes your head spin. Such is a comment I recently read in a discussion at Harpocrates Speaks. In You Have No Voice, they highlight a comment from the Age of Autism blog. Here’s the worst of the comment:

unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment.

The comment was apparently written by someone with the pseudonym “taxpayer”.

The message is clear: the disabled are such a burden to “taxpayers” that they (the disabled) must undergo any treatment considered a “cure” by taxpaying members.

Here’s the full comment:

M@”Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability?”

From my taxpayer perspective the answer is No, they don’t have a right to be there. No one has the right to refuse a cure or a treatment that would make them less needy of state-sponsored services.

I would much rather see my tax dollars going towards a CURE, I would rather be paying to ERADICATE autism than paying for your wheelchair access barrier and many millions of wheelchairs to come.

So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don’t have any right to sit on a panel that was created to COMBAT that disability.

As Harpocrates Speaks writes: “Ten thousand words would not be enough to express my feelings on this.”

I can’t even begin. In this day and age, how can anyone write the above?

–by Matt Carey

Anti-SLAPP motion moves forward in Wakefield v. BMJ et al.

13 Jul

In January of this year Andrew Wakefield filed a defamation suit against the BMJ (British Medical Journal), Brian Deer (journalist) and Fiona Godlee (editor BMJ). This was followed in March by a response from the BMJ team, including an anti-SLAPP motion to dismiss. (SLAPP = strategic lawsuit against public participation) Discussion of the response can be found on Mr. Deer’s website.

Little has been discussed publicly in the months since the BMJ team’s response. It’s been difficult to judge what is happening in the defamation suit. It appears now that the BMJ team have filed an amended response. My understanding is that this would give Mr. Wakefield 10 days from that filing to respond.

Mr. Deer’s ammended response is 86 pages long, shorter than his 102 page original statement, but still lengthy. I seem to recall Mr. Deer posting a picture of the entire BMJ team submission from March. It was huge. And now another stack of documents have been added to the docket. When I think of all these pages, all I can think of is the cost. The cost to draft. The cost for the BMJ legal team to review. The cost for Mr. Wakefield’s team to digest. Mr. Deer estimates that the 2005 lawsuit Mr. Wakefield brought against Mr. Deer, the Sunday Times and Channel 4 cost upwards of £500,000 to defend (even with Mr. Wakefield abandoning the suit). I shudder to think of the cost of the present litigation and what better purposes that money could be used for.

by Matt Carey

IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool

12 Jul

The Office of Autism Research Coordination (OARC) released a web-based tool to explore research projects. One can search or browse. Data are included for both government funded and non-government funding agencies (such as NIH, Autism Speaks, Simons Foundation, Autism Science Foundation, etc.). One can browse by objectives in the IACC’s Strategic Plan (for example, here is a starting point for 2009 projects)

For example, one can search for how many projects used the term “nonverbal” (six in 2009, fifteen in 2010). One can browse by funding group, through Strategic Plan question or other ways. You can download results in pdf or spreadsheet format.

If you are interested in seeing what research is funded, and not funded, this is a good tool.

—
By Matt Carey

What is the IACC charged to do?

12 Jul

The Interagency Autism Coordinating Committee (IACC) is charged with certain responsibilities under the law. At the same time, the scope of the IACC is actually quite limited and often misunderstood. In my opinion, the word “coordinating” may be a bit of an overstatement as the committee does not control funding nor does it have the power to make policy or to initiate research.

Here are the responsibilities of the IACC, as well as some of the limitations of the IACC, from the IACC Charge Document.

Statutory Responsibilities of the IACC under the Combating Autism Act and
Combating Autism Reauthorization Act

The IACC was established to coordinate all efforts within the Department of Health and Human
Services concerning autism spectrum disorder and is required to:

Develop and annually update a strategic plan for ASD research, and submit the strategic plan
and annual updates to Congress.

Develop and annually update a summary of advances in ASD research.

Monitor federal activities with respect to ASD.

Make recommendations to the HHS Secretary regarding research or public participation in
decisions related to ASD.

Meet at least twice a year (full committee) and conduct meetings in public with time for public
participation (public comment).

The committee may establish subcommittees and convene workshop and conferences.

How has the IACC executed these responsibilities?

The IACC serves as a forum for coordination, communication and collaboration between Federal
agencies, private organizations and community stakeholders.

The IACC developed its first strategic plan in 2009 and updated it in 2010 and 2011 with the goal
of focusing and accelerating research. The plan was developed with public input and a focus on
community needs.

The IACC has issued an annual Summary of Advances in ASD Research document each year –
2007, 2008, 2009, 2010 and 2011.

The IACC issues a Portfolio Analysis Report to analyze Federal and private funding for research
and how funding aligns with priorities identified in the Strategic Plan.

The IACC/OARC are launching a public database to provide information on federal and private
funded research projects.

IACC members and guest speakers provide research and services program updates at each
meeting of the IACC.

The IACC/OARC issues special reports on ASD activities such as the IACC/OARC ASD Research
Publications Analysis.

The IACC has made recommendations to the HHS Secretary in the Strategic Plan and through
advisory letters.

The IACC gathers public input and information on emerging issues in the autism community
through written and oral public comments at meetings of the full IACC, town hall meetings,
workshops and formal requests for public comment; all meetings, including phone meetings, are
open to the public by phone, webcast and/or webinar.

The IACC provides information to the public through its activities (all open to the public), public
website, news updates, listserv and Twitter announcements.

What is the committee not required or authorized to do?

To fund research – the IACC does not have or control a research budget.

To implement research or services programs – programs can only be implemented by
government agencies and private organizations.

To set government policies – the IACC is an advisory body that can raise awareness and make
recommendations for development or adoption of policies, but only government agencies and
private organizations can set policies.

To force government agencies to fund specific research projects or set particular policies.

Many seem to think of the IACC as a funding agency, or an group which sets the research agenda. It is “an advisory body”.

In my opiion, it is an advisory body which people listen to. Most of the research projects proposed in the Strategic Plan have been funded (which is pretty good in these economic times). Researchers I have spoken with have respect for the IACC.

By Matt Carey
(I serve as a public member on the IACC but all opinions expressed here and elsewhere are my own)

Great article at TPGA: Advice to Young Autistics: Stick Around and Become Awesome

8 Jul

The Thinking Person’s Guide to Autism (TPGA) has an article today by Nick Walker: Advice to Young Autistics: Stick Around and Become Awesome. Here’s the introduction:

So you’re a young Autistic person, and maybe you think you’re broken; maybe you think you’re doomed to a life of misery. You’re in pain, maybe depressed, maybe angry. Maybe you’re even considering suicide.

Sorry you’re going through that. I’ve been there myself, and it sucks.

But I survived. And although it took some time and involved some major struggles, I eventually ended up becoming a very happy adult with an awesome life where I spend much of my time doing things that I love — a life full of good friendships, good community, and those simple moments of joy, grace, kindness, and connection that make a life worthwhile. I’m glad I stuck around long enough to get here. The hard parts were worth it.

I hope I have you hooked and you will go to the TPGA site and read the rest.

By Matt Carey

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