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Thursday, December 31, 2015

Autism, Eugenics, and Euthanasia

In The Politics of Autism, I write about the dangers of eugenic solutions.

At The Independent, Mathieu Vaillancourt writes of forbidding autistic people to donate to sperm banks.
The other problem is the whole concept of eugenics behind this. It's indeed true that autism is a complex and umbrella-like condition which may seems scary at first glance. Many with autism face massive challenges - but others who have dyslexia, autism (or any other neurological disorder) are able to have great, fulfilling lives and possess a sense of responsibility, loyalty and precision that lots of people would do anything to have. To label people with dyslexia or Asperger Syndrome as impure makes this look like a dodgy remake of an era not so long ago, when some governments wanted a ''purer'' race and sought to sterilize people against their will, or even ''euthanize'' them.
He is not exaggerating.  In Buck v. Bell (274 US 200), the US Supreme Court upheld involuntary sterilization. Writing for the majority, Justice Oliver Wendell Holmes declared:
It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Jacobson v. Massachusetts, 197 U.S. 11. Three generations of imbeciles are enough.
And "respectable" thought leaders wanted to go even farther, to the killing of defectives.   A 1942 debate in the American Journal of Psychiatry focused on on whether the government should eliminate the  "feebleminded." Neurologist Foster Kennedy argued in the affirmative.Leo Kanner, who would soon publish the landmark article launching the study of aut ism, argued against killing.  An anonymous editorial sided with Kennedy’s position.

This debate was hardly a "one-off."

Consider William G. Lennox.  He was not some random nut, but a distinguished neurologist who did important work on epilepsy.  (To this day, the American Epilepsy Society bestows an annual William G. Lennox Award.)  In an article in autumn 1938 issue of The American Scholar, the official publication of Phi Beta Kappa, Dr. Lennox wrote of people "confined in institutions where they are never seen by the public."
They are the congenital idiots or monsters, the result of some slip of the hand of Him who made them; lumps of matter in human form but without human mind. What should be done with these? Of many defectives it can be said that human judgment is subject to error and that cures sometimes occur when least expected, but for this lowest group there can be no such plea. A clockcase without works can never tell time. Physicians are bound by inherited ethical standards and the motto "They shall not die." Raymond Pearl, the biologist, has this to say:
These unfit organisms are kept alive by the rest of society for no realistically demonstrable reason other than that they were once born, and by being born, somehow placed upon the rest of mankind what has gradually come to be regarded as a permanently binding obligation to see that they do not die. It is difficult to convince a biologist that a social philosophy will endure for any great length of time that deliberately and complacently loads upon the already weary backs of the able and fit an evergrowing burden. . . . No species or variety of plant or animal has long survived that was intrinsically incapable of making its own living. There is somewhere a biological limit to altruism, even for man.3
"Very well for another person's child," says the objector, "but what if it's your own? " Memory flicks past rows of writhing, incontinent, vacant-eyed, speechless bodies, distressing to the point of nausea, and I answer "I should rather see a child of mine in its coffin."
Dr. Lennox proposed actual death panels:
Decisions involving life and death are, however, reached daily by legal processes. The selection of the congenitally and hopelessly mindless for elimination would offer no more difficulties than their selection for lifelong incarceration. A court-appointed medical committee would be sufficient. Laws would of course need to be revised, and prior to this public opinion would need to be awakened. The essential prerequisite to human progress in any field is willingness to face realities and to work out fundamental rather than temporary solutions of problems.

Wednesday, December 30, 2015

The Danger of Eugenics

At The Guardian, Ari Ne'eman writes:
Britain’s largest sperm bank has a policy of turning away autistic donors and those diagnosed with other neurological disabilities, such as attention deficit hyperactivity disorder [ADHD], dyslexia and obsessive compulsive disorder.
The London Sperm Bank’s policies are deeply concerning. But to those of us who have been monitoring the ways in which genetic knowledge is being misused across the globe, they are not surprising. In egg donations (as in sperm donations) similar genetic screening of a diagnosis and a family history of autism, dyslexia and and obsessive compulsive disorder is not uncommon. There is considerable evidence to support that these are all conditions with strong genetic components.
He points out that the effectiveness of in-vitro fertilization (IVF) sex selection to avoid autism is up for debate.
Nonetheless, the intent of IVF sex selection is clear: reproductive technologies are being used to remove autistic people from future generations, not just to create “designer babies”. Privately run sperm and egg donation programmes, IVF clinics and laboratories around the world are making decisions that could eventually change the human race.
Last month, I joined more than 180 progressive academics, scientists, activists and public intellectuals in an open letter expressing concern over how new gene editing techniques allow for heritable human genetic modification: changes to the human genome that could irrevocably alter the future generations of humanity. New technology is emerging that will allow for “designer generations”.
He concludes by calling for greater regulation to curb eugenic practices.

In The Politics of Autism, I write:
Consider the next possible step for in-vitro fertilization. Suppose that scientists refine pre-implantation screening so that they could tell whether a particular embryo’s genetic make-up entails a high probability of autism.  If so, then doctors would presumably discard it in favor of another embryo that they would implant in the mother’s womb.  Some say that we need to debate the use of such techniques to screen for autism.   Ethicist Wesley J. Smith disagrees: “That is like saying allowing eugenic cleansing for racial features is a debate we need have: Both are invidiously discriminatory and have no place in an enlightened, equality-believing society.” 

Brain Tissue Donation

In The Politics of Autism, I write about medical and scientific research.

At KXAS-TV in Dallas, Ben Russell reports:
"It'll belong to science," Briesch said with a smile. "Whenever any member of our family is no longer using our brains, when we have passed on, we have committed to donate our brains for autism research."
Briesch, of Dallas, agreed to donate her brain for medical research being conducted by doctors involved with the Autism BrainNet.
"Brain study is the key to solving autism, and our mission is to urge families to make the heroic decision to register for brain tissue donation," is the opening message on the Autism BrainNet homepage.
"The way we like to say it is that these people have super brains," UT Southwestern Medical Center Department of Psychiatry chair Dr. Carol Tamminga said. "The brains are very important. And we’d like the chance to be able to take a look at these brains after they are done with them."
Autism BrainNet — a consortium of five research hospitals across the country — has collected 170 brain tissue donations so far. Eight of those brains are from Texas. Only 206 Texans, like Briesch and her family, have registered with the program.


Tuesday, December 29, 2015

A Business Employing Autistic People

In The Politics of Autism, I discuss employment of people on the spectrum.  

At WTSP-TV, Bobby Lewis reports on a Tampa business that employs autistic people.
"I also have a daughter with autism so I share the journey with so many parents who have the concern that what is this world going to be for my child?," said Vicky Westra, founder of Artistas Café. "When they turn 18-22, doesn't seem to be a lot of options still for young people with autism."

Gabrielle Westra, Vicky's daughter, was a little bit of the inspiration behind Artistas. Now, Vicky has eight autistic employees at Artistas. The job, which requires them to make coffee drinks and snacks and run a cash register, teaches basic job skills.

Monday, December 28, 2015

Studying Environmental Causes

In The Politics of Autism, I discuss various ideas about what causes the condition.

A release from the University of South Alabama:
Researchers at the University of South Alabama Department of Pediatrics and Division of Clinical and Translational Sciences in the Department of Internal Medicine at the University of Texas Health Science Center at Houston have developed a clinical study examining a potential connection between human exposure to environmental toxins and the incidence of autism spectrum disorder in children.

The importance of this research is underscored by the fact that the cause of autism spectrum disorder is not well understood,” explained Dr. [Hanes] Swingle, who is director of the USA Autism Diagnostic Clinic with USA Physicians Group and the principal investigator for the study site in Mobile. “Most experts agree that autism is caused by several factors or develops when a combination of factors exists.”

“In this study, we will closely look at two potential links in autism - genetics and the toxins we encounter in our environment as well as their relationship with one another,” Dr. Swingle explained.

According to Dr. Swingle, the project involves two study groups – a study group of children impacted by autism spectrum disorder and a second control group of typically developing children without autism.  “We have successfully recruited our study group who have autism and now are recruiting participants who do not have autism,” Dr Swingle said.

Researchers are seeking volunteers from the Mobile area to participate in this clinical research project. Study participants must be between the ages of 2 and 8 years old and have parental consent to participate. The study involves completing a questionnaire, a physical assessment and lab tests.

“Autism spectrum disorder is a complex neurodevelopment disorder that is usually diagnosed in early childhood,” explained Dr. Swingle.  “It affects language development, communication, imagination, cognition and social interactions.”

To learn more about participating in this clinical research project, call (251) 415-8577.
Also see Cassie Fambro's report at AL.com 

Sunday, December 27, 2015

Scientific Consensus and Support for Vaccines

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

At BMC Public Health, Sander L. van der Linde, Chris E. Clarke and Edward W. Maibach have an article titled "HighlightingCconsensus among Medical Scientists Increases Public Support for Vaccines: Evidence from a Randomized Experiment."

The abstract:
Background
A substantial minority of American adults continue to hold influential misperceptions about childhood vaccine safety. Growing public concern and refusal to vaccinate poses a serious public health risk. Evaluations of recent pro-vaccine health communication interventions have revealed mixed results (at best). This study investigated whether highlighting consensus among medical scientists about childhood vaccine safety can lower public concern, reduce key misperceptions about the discredited autism-vaccine link and promote overall support for vaccines.
Methods
American adults (N = 206) were invited participate in an online survey experiment. Participants were randomly assigned to either a control group or to one of three treatment interventions. The treatment messages were based on expert-consensus estimates and either normatively described or prescribed the extant medical consensus: “90 % of medical scientists agree that vaccines are safe and that all parents should be required to vaccinate their children”.
Results
Compared to the control group, the consensus-messages significantly reduced vaccine concern (M = 3.51 vs. M = 2.93, p < 0.01) and belief in the vaccine-autism-link (M = 3.07 vs M = 2.15, p < 0.01) while increasing perceived consensus about vaccine safety (M = 83.93 vs M = 89.80, p < 0.01) and public support for vaccines (M = 5.66 vs M = 6.22, p < 0.01). Mediation analysis further revealed that the public’s understanding of the level of scientific agreement acts as an important “gateway” belief by promoting public attitudes and policy support for vaccines directly as well as indirectly by reducing endorsement of the discredited autism-vaccine link.
Conclusion
These findings suggest that emphasizing the medical consensus about (childhood) vaccine safety is likely to be an effective pro-vaccine message that could help prevent current immunization rates from declining. We recommend that clinicians and public health officials highlight and communicate the high degree of medical consensus on (childhood) vaccine safety when possible.

Saturday, December 26, 2015

"No Jab, No Pay" in Australia

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

In Australia, Matthew Raggatt reports at The Sydney Morning Herald:
The rate of recorded conscientious objectors has fallen to three-year lows as vaccine law changes which will strip hundreds of Canberra parents of federal payments worth thousands of dollars take effect from January 1.
The extension to the federal government's "no jab, no pay" policy has been welcomed by the ACT chief health officer but condemned as draconian by parents who have reported negative reactions to vaccines.
The changes mean those with a conscientious, including religious, objection to having their children vaccinated will no longer be eligible for the child care benefit, child care rebate or the Family Tax Benefit Part A supplement.
The benefits are worth an estimated $7000 per family on average each year for those with young children.
There are some, such as very small babies, who can't be vaccinated for medical reasons.
It is these innocent people who don't have a choice that are placed at greater risk of avoidable illness due to the unjustified stance taken by some.

It is both shameful and appalling that leading Republican Party candidate Donald Trump recently reignited the disproved autism/vaccination link in front of a televised audience of 23 million people.
While not all registered contentious objectors object because of this myth, it is still a concern that the fears around vaccination prevent children from being protected from preventable deadly diseases.
The government should be congratulated for getting tough on the objectors through the new policy.

Friday, December 25, 2015

Autism in Canada

In The Politics of Autism, I discuss the need for more research on autism in countries other than the United States.

At The Hill Times, Kathleen O'Grady writes:
[A]utism families in Canada are struggling, that diagnosed cases of autism are on the rise, and that most provincesare not able to keep up with necessary services.
According to a recent survey from the Canadian Autism Spectrum Disorders Alliance (CASDA), almost three quarters of parents of preschoolers in Canada with autism wanted, but did not receive, early intensive behavioural intervention for their child—one of few interventions for autism with solid peer reviewed evidence.

A similarly troubling report, released last month from the Ontario Auditor General, reveals that in some jurisdictions in the province, there are more children waiting for autism services than receiving them, with more than 16,000 children on wait lists that continue to balloon.

This has largely been my own experience in Ontario. Despite being a proud advocate of our universal health care system, which is intended to serve those in need and not just those with the ability to pay, I found it failed me when I needed it most. When my son did not meet traditional developmental milestones, I discovered I would have to wait years to get a diagnosis in the public health system. We paid for a private diagnosis instead, but then we still had to wait more than two years for publicly funded behavioural therapy, which was provided to us for only six months.

Thursday, December 24, 2015

Vaccine Hesitancy in Canada

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Elizabeth Payne reports at The Ottawa Citizen that over a fourth of Canadian parents think that vaccine might cause autism or "other mental disorders."
Results of the online randomized survey of 1,000 Canadian parents of children under five indicate that vaccine hesitancy is alive and well in Canada, something that has been a growing concern for public health officials in recent years as major outbreaks of vaccine-preventable diseases such as measles become more common.
The survey was led by Josh Greenberg, director of Carleton University’s school of journalism and communications. It is one component of a larger project by the Canadian Immunization Research Network aimed at better understanding how parents make decisions about vaccinating their children.
...
[Ninety-one] per cent of parents surveyed agreed with the statement: “Generally speaking, vaccines are safe and effective for preventing serious childhood illnesses like measles.”

But then 28 per cent of parents either agreed or weren’t sure when asked to rank the statement: “Vaccines can cause autism and other mental disorders.”

In addition, 45 per cent of parents agreed or strongly agreed that parent should be able to choose whether to have their children vaccinated (compared with 49 per cent who disagreed or strongly disagreed). And 64 per cent agreed or strongly agreed that schools should refuse unvaccinated children, except for medical exemptions, while 30 per cent disagreed.

A significant percentage of parents surveyed (more than 32 per cent) also agreed with the statement that the pharmaceutical industry was behind the government’s push for mandatory vaccinations.


Wednesday, December 23, 2015

TRICARE Worries

In The Politics of Autism, I write about applied behavior analysis (ABA).  A December 2 post noted a change in reimbursement rates for TRICARE, which serves military families.  At Stars and Stripes, Tom Philpott reports:
Megan Miller, a therapist with a doctorate who co-owns Navigation Behavioral Consulting, an ABA business in Virginia Beach, Va., said 80 percent of her clients are military children. Current Tricare rates, she said, support tiered services because current advanced degree provider fees are sufficient to cover hours when both a supervisor and technician provide care.

Because Tricare pays for only one provider at a time, the worry for some businesses is that lowered fees won’t support the tiered model, forcing them to use only advanced degree therapists, and not technicians who can’t always work alone. Overall availability of services could fall, Miller said.
On Dec. 1, the day Tricare announced plans for cutting ABA reimbursements, Miller launched an online email survey of businesses that are part of the Behavior Analysis Advocacy Network. It asked how the lowered fees would affect services to their Tricare beneficiaries.

Within a week, more than 100 businesses responded. Six predicted no impact. Seventy said they were still determining the effect. But 13 businesses said they no longer would provide services to Tricare families, affecting 350 children. Eight other companies said fee cuts potentially would affect Tricare clients only in certai

Tuesday, December 22, 2015

Autism Navigator

In The Politics of AutismI discuss the difficulties facing families of newly-diagnosed children.

The lifetime societal cost for one child with autism is between $1.4 and $2.4 million, said Amy M. Wetherby, director of the Autism Institute in the Florida State University College of Medicine.
"And the difference has to do with whether that child also has an intellectual disability. Or to turn that around: If we can prevent the intellectual disability, we can save a million dollars per child," said Wetherby, the Laurel Schendel Professor of Communication Disorders in the FSU College of Communication and Information. "And if we can treat the autism, then we can save even more money. And most importantly, give kids a chance for a more normal life."
The diagnoses of autism have increased by more than 100 percent in the last 10 years, according to the Centers for Disease Control and Prevention. Autism Spectrum Disorder is a defined by consistent deficiency in social communication and interaction. It is accompanied by restricted, repetitive patterns of behavior, interests, or activities. Symptoms vary from a mild degree of social impairment to intellectual and language disabilities.
Faculty and staff at the Autism Institute at the FSU College of Medicine created the Autism Navigator to give tools to parents of autistic children. The Autism Navigator is a collection of web-based tools and courses developed to bridge the gap between science and community practice. Access to the website is free and it gives parents and caregivers information to make them more aware earlier of developmental issues in children.
As I point out in The Politics of Autism, statistics on social cost themselves entail controversy. An alternative perspective is that they do not actually represent the cost of autism, but rather the cost of discrimination and lack of support

Sunday, December 20, 2015

An Argument for Universal Screening

In The Politics of AutismI discuss screening and diagnosis.

At Autism, David Mandell and William Mandy have an editorial titled "Should All Young Children be Screened for Autism Spectrum Disorder?"
Recently, the US Preventive Services Task Force (USPSTF) added its influential voice to the debate, publishing draft guidelines that do not recommend universal screening (US Preventative Services Task Force, 2015). ... They observed that studies of early intervention in ASD mainly recruit children who are referred from specialist ASD services. The task force argues that findings from such research may not be generalizable to children identified by screening, who they describe as ‘younger and possibly less severely affected’. On this basis, the USPSTF concludes that a recommendation of universal ASD screening cannot be made.
This is flawed logic and demonstrates remarkable naiveté about the process by which children with ASD are identified and enter treatment. The contention that most early intervention studies are conducted with children 12–24 months older than those who would be identified by screening is highly questionable. Screening rarely leads directly to treatment. It leads to a referral for a specialized evaluation, often with a wait of a year or more (Zuckerman et al., 2015). Once the diagnosis is confirmed, families then may have to wait again until treatment is initiated. Most children picked up by universal screening at, say, 18 months would be aged at least 36 months by the time they had sat on waiting lists for full assessment and then treatment, and therefore of similar age to the participants in most trials of early intervention.
...
The USPSTF naiveté about the process by which screening leads to treatment extends to their understanding of the broader societal context in which such health policies play out. For example, the USPSTF did not appear to consider the potential effect of universal screening on reducing inequalities in health care. Children with ASD who are poor and who live in poorly resourced and rural communities are at elevated risk of being diagnosed late, or not at all (Daniels and Mandell, 2014; Durkin et al., 2010). Along with other policies, such as better education for parents and clinicians, universal screening aimed at early detection of ASD could be a powerful means of reducing social inequalities in ASD identification and treatmen

Saturday, December 19, 2015

Families and the Quality of Life

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At Autism, Leslie A. Markowitz and colleagues have an article titled "Development and Psychometric Evaluation of a Psychosocial Quality-Of-Life Questionnaire for Individuals With Autism and Related Developmental Disorders."  The abstract:
This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder–affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder–affected children require early, broad intervention strategies that positively impact the whole family.
At Reuters, Lisa Rapaport reports on the study:
"We have known for many years that families affected by autism spectrum disorder or related neurodevelopmental disorders are at risk for decreased quality of life as well as family and relationship stresses," said senior study author Dr. Thomas Frazier, an autism researcher at Cleveland Clinic in Ohio.

"The purpose of developing the scale was to give clinicians an instrument that they could use to go beyond assessing symptoms in the child and look more broadly at the whole family unit and support network," Frazier added by email.
...
Catching issues early may also help to minimize strain on families, noted Norah Johnson, a researcher at Marquette University and Children's Hospital of Wisconsin.

"The stress of autism relates to finances, personal and family life stressors, and managing behavior and communication with the child and caregiving stress," Johnson, who wasn't involved in the study, said by email. "Children with autism spectrum disorder often do not sleep well, act out in public and have comorbid conditions that tire parents out."

Friday, December 18, 2015

Neurotransmitter

In The Politics of Autism, I write about medical and scientific research.

A release from MIT:
MIT and Harvard University neuroscientists have found a link between a behavioral symptom of autism and reduced activity of a neurotransmitter whose job is to dampen neuron excitation. The findings suggest that drugs that boost the action of this neurotransmitter, known as GABA, may improve some of the symptoms of autism, the researchers say.
Brain activity is controlled by a constant interplay of inhibition and excitation, which is mediated by different neurotransmitters. GABA is one of the most important inhibitory neurotransmitters, and studies of animals with autism-like symptoms have found reduced GABA activity in the brain. However, until now, there has been no direct evidence for such a link in humans.
“This is the first connection in humans between a neurotransmitter in the brain and an autistic behavioral symptom,” says Caroline Robertson, a postdoc at MIT’s McGovern Institute for Brain Research and a junior fellow of the Harvard Society of Fellows. “It’s possible that increasing GABA would help to ameliorate some of the symptoms of autism, but more work needs to be done.”
Robertson is the lead author of the study, which appears in the Dec. 17 online edition of Current Biology. The paper’s senior author is Nancy Kanwisher, the Walter A. Rosenblith Professor of Brain and Cognitive Sciences and a member of the McGovern Institute. Eva-Maria Ratai, an assistant professor of radiology at Massachusetts General Hospital, also contributed to the research.

...
In addition to offering a possible new drug target, the new finding may also help researchers develop better diagnostic tools for autism, which is now diagnosed by evaluating children’s social interactions. To that end, Robertson is investigating the possibility of using EEG scans to measure brain responses during the binocular rivalry task.
“If autism does trace back on some level to circuitry differences that affect the visual cortex, you can measure those things in a kid who’s even nonverbal, as long as he can see,” she says. “We’d like it to move toward being useful for early diagnostic screenings.”- 

Thursday, December 17, 2015

Pushback on the Antidepressant Article

In The Politics of Autism, I discuss various ideas about what causes the condition.  An earlier post discussed a new study that raises a possible link to antidepressants.  The post also includes skeptical commentary, which is mounting.

Importantly, the study defined "autism" as a medical service claim or hospital code for autism or several related diagnoses. When the authors looked only at cases of autism that were confirmed by psychiatrists, link with antidepressants was no longer statistically significant. That means the study found that taking medications for depression is linked with having a child evaluated for autism, but not with actually having autism.
But that's not the fundamental limitation of study. The key problem is that women who take a medication when they are pregnant have a reason for taking it. Blaming the outcome on the medication, without considering the underlying disease, is like saying that umbrellas cause flooding. Taking away the umbrellas -- "not treating the rain" -- does not prevent flooding; it just means that people get soaked.
Furthermore, the authors did not compare women taking antidepressants with women with similarly severe depression who stopped their medication. ... The authors tried to sort this out by comparing women with a history of depression with women who were taking antidepressants. However, these two groups are very different. A woman with a "history of depression" might have been depressed in high school when her grandparent died, and then been fine thereafter. She is completely different from a woman who is continuing to take antidepressants during pregnancy because she has severe major depressive disorder and a history of a suicide attempt.
In  The Politics of Autism, I write: :If the science were not confusing enough, its coverage in the mass media has added another layer of murk. News reports hype tentative findings and weak correlations as `breakthroughs' in the quest for autism answers."

David Auerbach writes at Slate:
Study co-author Bérard, it turns out, has been criticized by a federal judge for cherry-picking results to link antidepressants to birth defects. The press should treat such studies with skepticism rather than leading with their findings. Sober pieces inScience, Wired, and NPR rightly questioned whether the study was significant and whether Bérard’s advocacy for stopping antidepressant usage during pregnancy was justified. In particular, Emily Underwood in Science wisely led off by writing “Many epidemiologists and psychiatrists say the study, published today in JAMA Pediatrics, is flawed and will cause unnecessary panic,” which is the most important point to make about this study. But too many journalists failed to make this point, and with autism research, such credulity is downright dangerous.
H

Tuesday, December 15, 2015

Autism Cop

In The Politics of Autism, I discuss interactions between police and autistic people.
Autistic people may have poor eye contact or engage in repetitive behaviors, which may strike police officers as suspicious. They also might be slow to react to police commands, which can cause a routine stop to spin out of control. In Greenville, South Carolina, one news account tells of an autistic man named Tario Anderson: “Officers said they saw Anderson walking on the sidewalk and tried him to question him. They said when they put a spotlight on Anderson, he put his hands in his pockets, started walking the other way and eventually started running from them. He was shocked with a Taser and arrested because he didn’t follow the officers’ commands.”[i] Anderson is also African American, which adds another dimension to the story. In the wake of incidents in which African Americans had died at the hands of white police officers, one father wrote of his autistic son: “What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?”[ii]

[i] Tim Waller, “Arrest of Autistic Man Prompts Call for Police Training,” WYFF, January 2, 2015. Online: http://www.wyff4.com/news/Arrest-of-autistic-man-prompts-call-for-police-training/30491078.[ii] David Dennis, Jr., “My Son Is Black. With Autism. And I’m Scared Of What The Police Will Do To Him,” Medium, December 4, 2014. Online: .https://medium.com/@DavidDWrites/my-son-is-black-with-autism-and-im-scared-of-what-the-police-will-do-to-him-1af15a203d57.
Zink, a St. Paul officer of 17 years, is known as the department's "autism cop." He's a father of two sons on the spectrum, which gives him unique insight on how cops should interact with people with autism. Flashing lights, searing sirens, and a harsh demeanor are likely to inflame and confuse those with a hypersensitivity to lights and sound, he tells others in his department. Those who avoid eye contact with cops or seem to ignore their commands might not be doing it because they're trying to be evasive, but because they're confused and afraid.
...
Zink started the Cops Autism Response Education (CARE) about three years ago in response to the violent arrest of an autistic young man. The man's mother, Linda Huber, said her son had fled the floodlight of a patrolling squad car, which made the cops think that he had something to hide. They chased him and billy clubbed him when he tried to struggle, she said
...
The fledgling CARE program is rooted in St. Paul's western district, beginning with Zink informally educating his fellow officers. It has yet to fully take form throughout the city, but Cmdr. Paul Iovino says that it's now required training for new recruits coming up through the academy. They're hoping to strengthen it in coming years, as more children are projected to be diagnosed with autism

Monday, December 14, 2015

Antidepressants

In The Politics of Autism, I discuss various ideas about what causes the condition.
Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious peer-reviewed studies:
Pesticides;
Air pollution and proximity to freeways;
Maternal thyroid issues;
Autoimmune disorders;
Induced labor;
Preterm birth;
Birth by cesarean section;
Maternal and paternal obesity;
Maternal and paternal age;
Maternal post-traumatic stress disorder;
Smoking during pregnancy;
Antidepressant use during pregnancy. 
Takoua Boukhris and colleagues have an article in JAMA Pediatrics titled "Antidepressant Use During Pregnancy and the Risk of Autism Spectrum Disorder in Children".  The abstract:
Importance The association between the use of antidepressants during gestation and the risk of autism spectrum disorder (ASD) in children is still controversial. The etiology of ASD remains unclear, although studies have implicated genetic predispositions, environmental risk factors, and maternal depression.
Objective To examine the risk of ASD in children associated with antidepressant use during pregnancy according to trimester of exposure and taking into account maternal depression.
Design, Setting, and Participants We conducted a register-based study of an ongoing population-based cohort, the Québec Pregnancy/Children Cohort, which includes data on all pregnancies and children in Québec from January 1, 1998, to December 31, 2009. A total of 145 456 singleton full-term infants born alive and whose mothers were covered by the Régie de l’assurance maladie du Québec drug plan for at least 12 months before and during pregnancy were included. Data analysis was conducted from October 1, 2014, to June 30, 2015.
...
Conclusions and Relevance Use of antidepressants, specifically selective serotonin reuptake inhibitors, during the second and/or third trimester increases the risk of ASD in children, even after considering maternal depression. Further research is needed to specifically assess the risk of ASD associated with antidepressant types and dosages during pregnancy.
At Science, Emily Underwood writes:
[T]he “critical flaw” in the new research is that it doesn’t fully account for the fact that women suffering from psychiatric illnesses already have a greater risk of having children with ASD, says Roy Perlis, a psychiatric geneticist at Harvard University who consults for several biotechnology startups. Although the authors controlled for maternal depression, “they don’t really have reliable measures of severity,” he says. As a result, there’s no way to tell whether the children were at higher risk because their mothers were taking more drugs or because the women had more severe depression. Several papers, including two from Perlis’s group, have looked at large numbers of women and children and found no increased risk for ASD after adjusting for the severity of maternal depression, he says. “The risk travels with the disease, not the treatment,” he says.

Indeed, given the lack of evidence as to whether SSRIs and other antidepressants have any causal effect on fetal neurodevelopment, it’s possible that SSRIs could actually help a developing fetus whose mother is depressed, says Jay Gingrich, a psychiatrist at Columbia University who has no affiliations with any pharmaceutical companies. “Suffice it to say that there is a urgent need for more research into this area.”

Sunday, December 13, 2015

Soldiers on the Spectrum

In The Politics of Autism, I note that we need more study of how autistic people fare in other countries.

At the Jewish Telegraph Agency, Ben Sales reports on N.S., an autistic member of the Israeli Defense Forces:
N.S. is among some 50 soldiers and trainees in Roim Rachok, Hebrew for Seeing Far, a program aimed at drafting the one in 100 Israeli children diagnosed with autism, according to statistics from the Israeli Society for Autistic Chidren. Based in the IDF’s Intelligence Unit 9900, which maps and analyzes visual data, the soldiers of Roim Rachok decipher aerial reconnaissance photos to provide information to soldiers ahead of combat missions. Other tracks train candidates to be army electricians, who deal with devices like night vision goggles, or optics technicians, who work with binoculars.
“There’s an agenda to show people on the spectrum have abilities and can do things,” said T.V., a former Defense Ministry official who co-founded Roim Rachok in 2012. “A big part [of the work] is to notice changes and a certain routine repetition.”
Autism diagnoses are rising in Israel. According to the Israeli Society for Autistic Children, about 10 times more Israeli children have autism as do adults. In the past, T.V. said, these children at 18 would enter the IDF and be given menial, frustrating jobs.

Saturday, December 12, 2015

Sad Story of a Residential Placement

In The Politics of AutismI discuss the use of restraint and seclusion.

At ProPublica, Heather Vogell writes about a young man in Florida who spent years in residential placement, only to end up in a horror story of restraint (h/t EMG).
Each year, nearly 20,000 youngsters with severe disabilities like Adam’s are sent to live at special education schools at public expense. Federal law gives parents that option when local public school districts can’t or won’t accommodate their children. But there’s little to guarantee that such vulnerable students — some are unable to speak for themselves — receive safe or humane treatment. As Kennedy-Shields would learn, standards for such programs are so loose, monitoring so inconsistent and penalties so rare that some have escaped serious repercussions even for repeated or egregious lapses.
AdvoServ cares for 700 disabled children and adults at 77 facilities in three states, with Carlton Palms by far its largest campus. State officials and advocates for the disabled have long known of its aggressive use of restraintsholds or devices that limit residents’ ability to move their heads, torsos, arms or legs. In particular, the company became known for embracing so-called mechanical restraints, such as straps on chairs or beds, wrist cuffs or “wrap mats” that resemble full-body straitjackets. Most providers stopped using such measures long ago, after concluding they were risky and often ineffective over the long-term.
...
Restraints were ingrained in the company’s culture, but there was more than that at work, added Glen Gandy, who worked with residents at Carlton Palms for several years. High turnover meant workers often didn’t know residents well enough to calm them, and they would turn to restraints instead, Gandy said. He was fired in 2012 after an incident in which he and other workers attempted to wrestle a thrashing resident into a wrap mat. As Gandy held the resident’s head, the man bit down on Gandy’s finger. Gandy broke the man’s jaw — accidentally, he says — getting his finger out of the man’s mouth.

Friday, December 11, 2015

ESSA and the Disability Community

At Education Week, Christina Samuels reports on passage of the Every Student Succeeds Act.
Though NCLB is gone, to be replaced with far-more state-led accountability, there are some "guardrails," as Sen. Patty Murray, a Democrat from Washington and an architect of the law, has said.
For example, states must still separate and report the performance of students with disabilities on state tests, and those tests must still be given in grades 3-8 and once in high school.

Most students with disabilities will be taking the general assessment: The bill maintains a 1 percent cap on the percentage of all students who can take alternate assessments and be counted as proficient. One percent of all students equates to about 10 percent of students with disabilities. These alternate assessments are intended for students with severe cognitive disabilities. The new law also says that taking the alternate assessment should not preclude a student from attempting to get a regular high school diploma.

The law requires states to develop plans on how they plan to reduce bullying and harassment,restraint and seclusion, and suspensions and expulsions—all of which disproportionately affect students with disabilities.
From Autism Speaks:
Approval of the legislation comes on the heels of the 40th Anniversary of the Individuals with Disabilities Education Act (IDEA) when individuals with autism and their families celebrated the improvements in public education for those with developmental disabilities, but challenged Congress to go further to help all students reach their fullest potential.
The improvements to federal education policy come after the U.S. Department of Education recently announced rule changes aimed at monitoring and prioritizing the progress of students with disabilities, including those with autism.
The new rules disallow states from testing students with disabilities with alternative academic standards. Advocates point out that using alternative academic standards for students with disabilities may hinder their access to general education curriculum and graduation. By codifying these accountability provisions, the Every Student Succeeds Act establishes expectations for academic achievement for students with disabilities.

Thursday, December 10, 2015

Earlier Evaluations

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

A release from the University of Utah:
Children suspected of having autism spectrum disorder (ASD) appear to be getting earlier evaluations to identify the condition, a study of 4-year-olds in Utah and four other states has found. The research suggests that a national effort to have kids looked at when they are younger is working.
Early intervention is critical to help those with ASD lead fuller lives. The drive to identify children with ASD or developmental disabilities at younger ages gained momentum after a landmark 2007 study estimated that one in 152 U.S. children had ASD, a marked increase over previous years. Following the study, the American Academy of Pediatrics recommended every child be evaluated for autism at 18 and 24 months.
Led by researchers from the Centers for Disease Control and Prevention (CDC), five states in the Early Autism and Developmental Disabilities Network (Early ADDM)–Utah, Arizona, Wisconsin, New Jersey and Missouri–examined health and education records of 4- and 8-year-old children in 2010 who had ASD characteristics. Among 4-year-old children with a previous ASD diagnosis by a community provider, researchers found that the median age of their first evaluation was five months earlier for children born in 2006 compared to children born in 2002, at 27 months and 32 months, respectively.
The reduction in the median age of first comprehensive evaluation demonstrates significant progress toward the goal of improving early screening and identification of children with ASD, according to Deborah Bilder, M.D., University of Utah associate professor of child psychiatry and the study’s second author.
The numbers also showed that on average across the five states, a much larger percentage of the 4-year-olds than 8-year-olds identified with ASD by Early ADDM (71.3 percent versus 42.6 percent) were evaluated before age 3. The Utah ADDM showed a similar trend: 70.4 percent of 4-year-olds identified with ASD compared with 32.6 percent of 8-year-olds identified with ASD had a comprehensive evaluation by age 3.

“This study was the first opportunity to see how well we are doing at identifying kids who show signs of autism or developmental disabilities at an earlier age,” Bilder says. “Our findings should give policy makers the feedback they need to continue the effort to identify kids with ASD earlier and also to make adjustments in funding allotments, service planning and public policy where needed.”
The study appeared online in the Journal of Developmental and Behavioral Pediatrics on Dec. 9, 2015.
Along with looking at the median age of when children were first evaluated, the study estimated that across the Early ADDM sites one in 75 4-year-olds and one in 48 8-year-olds had ASD. The higher prevalence among 8-year-olds is likely explained, in part, by the under-identification of ASD among preschool children, according to Bilder. “Some children are not recognized as having ASD until they enter the public school system or reach an age where their social deficits become more apparent when compared to their peers,” she says. “This is also the first year we measured ASD prevalence among 4-year-olds and estimate that previously we missed at least 10 percent of children with ASD.”

Early ADDM looked at de-identified health and education records of 58,467 4-year-olds and 56,727 8-year-olds in the five-state network. The study found a total of 783 4-year-olds and 1,091 8-year-olds with ASD.
In Utah, the ADDM surveys rely on data from the Utah Registry of Autism and Developmental Disabilities (URADD), funded by the Utah Department of Health.
For the current study, URADD researchers surveyed the records of 4-year-olds with ASD in Tooele County and part of Salt Lake County and identified 132 children with ASD. Prevalence of the disorder in Utah was estimated at one in 83 4-year-olds. The numbers also showed that male 4-year-olds in Utah were three times more likely to be diagnosed with ASD than females. The reason for the almost triple prevalence of ASD among males compared to females is not yet known. The ASD prevalence in Utah among Non-Hispanic whites was nearly 1½ times that of Hispanic children, which may be reflect differences in access to health and education services.
“This is the first study of 4-year-old children in Utah using ADDM methodology,” Bilder says. “We look forward to reviewing data from our subsequent 2012 study year so that we may have a clear sense of trends in national and local ASD prevalence and evaluation practices.”
Utah and the other states in 2010 Early ADDM are part of the larger Autism and Developmental Disabilities Monitoring Network(ADDM), an 11-site CDC consortium that tracks autism prevalence among the nation’s 8-year-olds. Amanda Bakian, Ph.D., URADD director, co-investigator of Utah ADDM and assistant professor of psychiatry (biostatistics) also contributed to 2010 Early ADDM. Bilder also serves as co-investigator at URADD.

Wednesday, December 9, 2015

Pediatricians and IDEA

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act:

In Pediatrics, Paul H. Lipkin and Jeffrey Okamoto have an article titled "The Individuals With Disabilities Education Act (IDEA) for Children With Special Educational Needs."  The abstract:
The pediatric health care provider has a critical role in supporting the health and well-being of children and adolescents in all settings, including early intervention (EI), preschool, and school environments. It is estimated that 15% of children in the United States have a disability. The Individuals with Disabilities Education Act entitles every affected child in the United States from infancy to young adulthood to a free appropriate public education through EI and special education services. These services bolster development and learning of children with various disabilities. This clinical report provides the pediatric health care provider with a summary of key components of the most recent version of this law. Guidance is also provided to ensure that every child in need receives the EI and special education services to which he or she is entitled.
The conclusion:
Services provided under IDEA and other federal laws are essential supports for children with special needs to learn and be integrated and contributing members of their communities. Health care providers have an important role in supporting the education of children with disabilities and other health issues and their families and in supporting EI and school programs. Health care providers are advised to understand the basic elements of federal law, including the public school mandate to provide an FAPE to qualified students in the LRE. Although providers are advised to respect the educational expertise of school professionals, they can safeguard that children with disabilities and other health or behavioral issues receive appropriate services from EI and school programs throughout their childhood years. Providers can particularly support these children and their families through critical transitions from the initial referral to EI and school systems through the transition into adulthood.

Tuesday, December 8, 2015

Yet Another Possible Correlation

AFP reports:
Children born to mothers with a hormonal imbalance run a much higher risk of developing autism, according to a new study released by Sweden's Karolinska Institutet on Tuesday.
The findings, published in the journal Molecular Psychiatry, link an imbalance called polycystic ovary syndrome (PCOS) to autism spectrum disorder (ASD) in children.
ASD represents a range of neurodevelopmental disorders in children. 
In The Politics of Autism, I write:
Because scientists lack a grand theory of autism causation – not to mention accurate knowledge of how autism prevalence has changed over the years – research has moved in a bewildering array of directions. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious peer-reviewed studies:
  • Pesticides;[i]
  • Air pollution and proximity to freeways;[ii]
  • Maternal thyroid issues;[iii]
  • Autoimmune disorders;[iv]
  • Induced labor;[v]
  • Preterm birth;[vi]
  • Birth by cesarean section;[vii]
  • Maternal and paternal obesity;[viii]
  • Maternal and paternal age;[ix]
  • Maternal post-traumatic stress disorder;[x]
  • Smoking during pregnancy;[xi]
  • Antidepressant use during pregnancy.[xii]

[i] Janie F. Shelton, Neurodevelopmental Disorders and Prenatal  Residential Proximity to Agricultural Pesticides: The CHARGE Study ,” Environmental Health Perspectives, June 23, 2014 (advance publication). Online: http://ehp.niehs.nih.gov/wp-content/uploads/advpub/2014/6/ehp.1307044.pdf.[ii] Andrea L. Roberts et al., “Perinatal Air Pollutant Exposures and Autism Spectrum Disorder in the Children of Nurses’ Health Study II Participants,” Environmental Health Perspectives 121 (August 2013): 978-984. Online: http://ehp.niehs.nih.gov/wp-content/uploads/121/8/ehp.1206187.pdf; Heather E. Volk et al., “Residential Proximity to Freeways and Autism in the CHARGE Study,” Environmental Health Perspectives 119 (June 2011): 873-877. Online: http://ehp.niehs.nih.gov/wp-content/uploads/119/6/ehp.1002835.pdf.[iii] Gustavo C. Román, et al., “Association of Gestational Maternal Hypothyroxinemia and Increased Autism Risk,” Annals of Neurology 74 (November 2013): 733-742. Online: http://onlinelibrary.wiley.com/doi/10.1002/ana.23976/full.[iv] Lior Brimberg, et al., “Brain-Reactive IgG Correlates with Autoimmunity in Mothers of a Child With an Autism Spectrum Disorder,” Molecular Psychiatry 18 (November 2013): 1171-1177. Online: http://www.nature.com/mp/journal/v18/n11/full/mp2013101a.html.[v] Simon G. Gregory, et al., “Association of Autism With Induced or Augmented Childbirth in North Carolina Birth Record (1990-1998) and Education Research (1997-2007) Databases,” JAMA Pediatrics 167 (October 2013): 959-966. Online: http://archpedi.jamanetwork.com/article.aspx?articleid=1725449.[vi] Michael W. Kuzniewicz et al., “Prevalence and Neonatal Factors Associated with Autism Spectrum Disorders in Preterm Infants,” Journal of Pediatrics 164 (January 2014): 20-25. Online: http://www.jpeds.com/article/S0022-3476(13)01142-6/abstract?cc=y..[vii] Eileen A. Curran et al., “Research Review: Birth By Caesarean Section and Development Of Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder: A Systematic Review And Meta-Analysis,” Journal of Child Psychology and Psychiatry (October 27, 2014). Online: http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12351/pdf.[viii] L C Reynolds, et al., “Maternal Obesity and Increased Risk for Autism and Developmental Delay among Very Preterm Infants,” Journal of Perinatology, May 8, 2014 (advance publication). Online: http://www.nature.com/jp/journal/vaop/ncurrent/full/jp201480a.html; Pål Surén et al., “Parental Obesity and Risk of Autism Spectrum Disorder,” Pediatrics 133 (May 2014): e1128-e1138. Online: http://pediatrics.aappublications.org/content/early/2014/04/02/peds.2013-3664.full.pdf+html[ix] John McGrath, et al., “A Comprehensive Assessment of Parental Age and Psychiatric Disorders,” JAMA Psychiatry 71 (March 2014): 301-309. Online: http://archpsyc.jamanetwork.com/article.aspx?articleid=1814892; Selma Idring et al., “Parental Age and the Risk of Autism Spectrum Disorders: Findings from a Swedish Population-Based Cohort,” International Journal of Epidemiology 43 (February 2014): 107-115. Online: http://ije.oxfordjournals.org/content/43/1/107.full.pdf+html.[x] Andrea L. Roberts et al., “Women's Posttraumatic Stress Symptoms and Autism Spectrum Disorder in Their Children,” Research in Autism Spectrum Disorders 8 (June 2014): 608-616. Online: http://www.sciencedirect.com/science/article/pii/S1750946714000427.[xi] Phuong Lien Tran, et al., “Smoking during Pregnancy and Risk of Autism Spectrum Disorder in a Finnish National Birth Cohort,” Paediatric and Perinatal Epidemiology 27 (May 2013): 266–274. Online: http://onlinelibrary.wiley.com/doi/10.1111/ppe.12043/full.[xii] Rebecca A. Harrington, et al., “Prenatal SSRI Use and Offspring with Autism Spectrum Disorder or Developmental Delay,” Pediatrics 133 (May 2014): e1241 -e1248. Online: http://pediatrics.aappublications.org/content/133/5/e1241.