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Open Letter to the Media in the Wake of the Aurora Shootings

23 Jul

My guess is that many of us saw this coming: the point when public commenters would speculate that the Aurora Colorado shooter was autistic. Joe Scarborough may have been the first, and likely is not the last.

The MSNBC host said he “did not want to generalize,” but that he knew who was responsible as soon as he heard about the shooting. “I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society, it happens time and time again,” he remarked.

“Most of it has to do with mental health. You have these people that are somewhere, I believe, probably on the autism scale,” said Scarborough, whose own son has Asperger’s syndrome. “I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses, they can even excel on college campuses, but are socially disconnected.”

Knowing this sort of speculation would happen (remember the Virginia Tech massacre? “While early media reports carried speculation by South Korean relatives that Cho had autism, the Review Panel report dismissed this diagnosis”) is not the same as being able to prepare for how to respond. As frequent readers will likely recall, I am often at a loss for words when events stretch the boundaries of appropriateness.

In place of any comments–or inability to make such comments–let me point you to Kassiane at Radical Neurodivergence Speaking who has written an Open Letter to the Media in the Wake of the Aurora Shootings.

I am an Autistic adult. In the wake of the tragic shootings in Aurora, Colorado, my community was sitting not only in the sadness that all such tragedies bring, but also in fear and anticipation that once again, we would be your scapegoat. Once again, you would start declaring that we and the killer had the same neurology before the bodies were even cold, before the initial tears had dried.

And again, you did not disappoint. Again, you went to declare the killer mentally ill or Autistic before you even possibly had a chance to talk to anyone qualified to make those calls. Again, you cast yet another layer of suspicion on my community. Again, you made me someone to be feared.

Here’s the deal, neurotypical folks of the media: You are far more dangerous to us than we are to you. The mentally ill and the developmentally disabled are far more likely to be your victims than you are to be ours.

And Kassiane backs up what she says. I encourage people to go over and read the Open Letter in full. And forward it to people who bring up this autism speculation.

What projects are being funded in autism research? Part 1: vaccines and GI issues

23 Jul

The Office of Autism Research Coordination (OARC) rolled out a new web-based tool to explore research projects in autism. The IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool has already been discussed here at Left Brain/Right Brain, but I thought it was worth doing some exploring using the tool. In particular, let’s see what, if anything, is happening in some of the “hot button” issues from some segments of the online parent community.

I put in simple search terms. First was “gastrointestinal”. I found 11 projects ongoing in 2009 and 14 projects being funded in 2010. There is some overlap between the two years (as you would expect), and some projects mention the term “gastrointestinal” but are not focused on the topic (for example, this project on treating sleep issues in autistic children). But this project, Analysis of the small intestinal microbiome of children with autism, would seem to be right on target for what many parents are asking for. As is Novel probiotic therapies for autism. Much of the discussion of gastrointestinal function in autistics seems to be focused on the “leaky gut” theory. I would think that this study (noted in detail below) would be of particular interest to many.

Are autism spectrum disorders associated with leaky-gut at an early critical period in development?

Although there is general consensus of greater prevalence of gastrointestinal (GI) distress in individuals with autism spectrum disorders (ASD), the nature of the link is unknown. There is preliminary evidence to suggest that GI distress in ASD may be associated with “Leaky-Gut” (i.e., increased permeability of the intestinal mucosal barrier due to either delayed or abnormal development), as shown by a study showing higher-than-normal prevalence in ASD children 4 – 16 years of age (e.g., D’Eufemia et al., 1996). During normal digestion, the mucosal barrier is responsible for keeping digestive enzymes out of the intestinal wall. Recent evidence shows that if these powerful degrading enzymes enter the wall of the intestine, they will cause major damage to the intestinal wall as well as inflammation in the brain. Investigators hypothesize that ASD may be associated with Leaky-Gut early in development, which combines, or interacts, with diet (breast-milk, formula, solid foods) leading to intestinal wall damage and inflammation in: 1) the intestine, which could explain the GI distress, and 2) in the bloodstream, which could reach and damage the developing brain, thus contributing to the onset of ASD itself. In this study, researchers will track key aspects of GI function in Low-Risk and “High-Risk” infants (i.e., infants who have an older sibling diagnosed with ASD), including: 1) signs of Leaky-Gut, 2) symptoms of GI distress (e.g., diarrhea, reflux, constipation), 3) diet (breast-milk vs. formula), and 4) evidence of digestive enzymes and inflammatory markers of cell death in the bloodstream. They will correlate GI, diet, and inflammatory measures with results from cognitive, visual, and behavioral tests, including standard ASD diagnostic tests, at two and three years of age to determine if Leaky-Gut is associated with the development of ASD.

How about vaccines? Four projects in 2009, four in 2010. Three of those projects are the same from 2009 to 2010, and those three are funded by Autism Speaks. Two are funded by the Federal Government: Vaccine safety datalink thimerosol and autism study and A primate model of gut, immune, and CNS response to childhood vaccines. The second of those projects is, I believe, a follow-on study to the Laura Hewitson primate study (many supporters of that work complain that there has been no follow on to it)

While we are at it, there are four studies mentioning “mercury” in 2009, nine in 2010 (granted, in 2010 research funded by SafeMinds was added to the database. As they are a major proponent of the mercury hypothesis, it isn’t surprising that four of these studies were funded by them).

I am reminded of past criticisms about environmental risk factors levied at the IACC. In past years there was a discussion point that the IACC Strategic Plan did not include an emphasis on environmental risk factors for autism. A simple review of the strategic plan showed this not to be the case. Oddly enough, one could not find discussion of the facts on the websites of those claiming to be calling for environmental risk factor research, only here at Left Brain/Right Brain.

It has also been discussed here that the IACC does not control the research budgets and no direct control over what projects actually get funded. The IACC is an advisory committee. The fact that most research project items in the Strategic Plan do get funded suggests that the IACC is an effective advisory group.

—
by Matt Carey

note: I serve as a public member to the IACC, but my opinions and comments (even those about the IACC) are my own.

Stem cell “therapy” for autism in the Philippines?

23 Jul

One would think so from the title of the story in a Philippine website: “ Stem Cell Therapy: Cure For Autism?” I worried, has another overseas location started in the stem cell “therapy ” businesses?

Apparently not. The story is about a Philippine family, but the Clinic is in Germany and the stem cells are fetal lamb cells.

Let’s start with a statement from the end of the story :

Unless you’re a mother, and you’ve searched high and low for treatments for your child, there’s nothing to lose, really. Yes, it’s quite costly but what parent would not do that for their child

There’s nothing to lose. It’s so sad to see it in black and white like that. Of course one must be cautious not to assume this means she feels her children is “nothing to lose”, but instead is saying that she feels that there is no chance of something going wrong. Either way, such statements should not be put in print.

Is it really “stem cell” therapy? They are calling it “fresh cell” therapy.

Ethan underwent what is called Fresh Cell Therapy, a biological treatment by which specially selected fresh or live cells or cell extracts of donor animals, usually sheep, are injected into the human body for treatment of various ailments or rejuvenation purpose.

The procedure uses fresh cells from the fetus of a lamb and takes not more than three hours from harvesting to production to injection of the cells to the patient. All procedures are done in their clinic in Germany.

They seem to be rebranding their “fresh cell” idea to capitalize on the publicity around stem cell research.

The story could form the basis for a thousand words essay by one of the skeptic bloggers.

Unlike autologous stem cell transplant, in which blood-forming stem cells are removed, stored, and later given back to the same person, fresh cell therapy is non-invasive and is only injected to the body.

It’s “non invasive”, it just involves injecting fetal lamb cells into the body.

The story continues with standard alternative medicine themes: they can’t wait for proof, a large percentage (but never too high) report benefit, benefits can be seen quickly but long term therapy is needed (5-10 years of expensive therapy).

This story is filled with red flags that make such stories frightening. And all the hooks of false hope that are sure to pull in some more families.

—
By Matt Carey

Exploring the Proposed DSM-5 Criteria in a Clinical Sample

20 Jul

The potential effect of the change from DSM IV to DSM 5 has generated quite a lot of interest within the autism community. Yes, I realize that is an understatement. In her presentation to the IACC, Sue Swedo (chair of the neurodevelopmental disorders work group for the DSM 5) stated that comments to the DSM 5 committee are running 10x higher for autism than any other diagnosis.

This week another study on the potential changes caused by the change to DSM 5 was published: Exploring the Proposed DSM-5 Criteria in a Clinical Sample. This from York University in Toronto, Canada. This study points, as others have, to the DSM 5 not diagnosing children who would meet the autism criteria under DSM IV. 19% of children studied with autistic disorder under DSM IV would not be picked up by DSM 5, according to this study. A much larger fraction–83%–of those with DSM IV PDD-NOS diagnoses would not receive ASD diagnoses under DSM 5 (again, according to this study).

Here is the abstract:

The proposed DSM-5 criteria for Autism Spectrum Disorder (ASD) depart substantially from the previous DSM-IV criteria. In this file review study of 131 children aged 2-12, previously diagnosed with either Autistic Disorder or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), 63 % met the new DSM-5 ASD criteria, including 81 % previously diagnosed with Autistic Disorder and only 17 % of those with PDD-NOS. The proportion of children meeting DSM-5 differed by IQ grouping as well, with higher rates in lower IQ groups. Children who did meet criteria for ASD had significantly lower levels of cognitive and adaptive skills and greater autism severity but were similar in age. These findings raise concerns that the new DSM-5 criteria may miss a number of children who would currently receive a diagnosis.

–by Matt Carey

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

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