Tuesday, November 28, 2017

Sex, Lies, and Autism Research


How can we get tangible benefit from the millions we spend on autism science?.
Posted Nov 12, 2017

The U.S. government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent. As an adult with autism, sometimes I’ve been pleased at our government’s choices. Other times I’ve been disappointed. Every now and then I turn to reflect: What have we gotten for our investment?
Autistic people and their parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.
It would be one thing if massive help was just around the corner, but it’s not. There are no breakthrough medicines or treatments in the pipeline. Autistic people still suffer from GI pain, epilepsy, anxiety, depression, and a host of other issues at the same rates we did before any of this research was funded.
I don’t mean to suggest that nothing has been accomplished.  Scientists have learned a lot. They know more about the biological underpinnings of autism. Researchers have found hundreds of genetic variations that are implicated in autism. We’ve quantified how autistic people are different with thousands of studies of eye gaze, body movement, and more. Scientists are rightly proud of many of their discoveries, which do advance medical and scientific knowledge. What they don’t do is make our lives better today.
Why is that?
In the past I’ve written about the idea that taxpayer-funded research should be refocused on delivering benefit to autistic people. What I have not written about, is why that hasn’t happened, at the most fundamental level.
The answer is simple: Until quite recently, autistic people were not asked what we needed.
There are many reasons for that. Autism was first observed in children and no one expects children to have adult insight and self-reflection. When autism was recognized in adults, they were assumed to be too cognitively impaired to participate in conversations about their condition. Finally, in the spirit of the times, doctors often assumed that they knew best. They were the trained professionals, and we were the patients (or the inmates.)
So doctors studied every question they could imagine, and then some, seldom seeking our opinions except in answer to their research questions. They assumed they knew what “normal” was, and we weren’t it. Countless million$ went down the rabbit hole of causation studies, whether in genetics, vaccines, or other environmental factors. Don’t get me wrong—the knowledge we’ve gotten is valuable for science. It just did not help me, or any autistic person I know.
Millions more have been spent observing us and detailing exactly the ways in which we are abnormal. Only recently have some scientists began to consider a different idea: Perhaps “normal” is different for autistic people, and we are it. Again the studies enhanced the scientists’ knowledge but didn’t do much to help us autistics.
Then there are the educators and psychologists. They observed our “deviations” and then considered therapy to normalize us. That led to ABA and a host of other therapies. Some of those have indeed been beneficial, but the money spent on beneficial therapy is just a drop in the bucket when considering what we taxpayers have funded overall.
Want a different and better outcome? Ask actual autistic people.
We can tell you what our problems are, in many cases very eloquently. I’m not going to re-state all our needs here. I’ll tell you this: Whenever this topic comes up at IACC (the Federal committee that produces the strategic plan for autism for the U.S. government), the priorities of autistic people seem rather different from those of the researchers our government has been funding for so long.
Autistic people have many disparate needs, but they all boil down to one thing: We have major challenges living in American society. Medical problems, communication challenges, learning difficulties, relationship issues, and chronic unemployment are all big deals for us.  The issues are well laid out and many.
Before autistic people began speaking out in great numbers, all we had was parent advocacy. We should not dismiss that, and parents still have a role today, particularly in advocacy for small children and children who are older but unable to effectively advocate for themselves.
Even as we thank parents for their service, it’s time to recognize autistic voices (some of which belong to parents too) should be taking the lead.
As much as parents did for us, they also unwittingly contributed to harm. Parents misinterpreted harmless stimming, and encouraged therapists to suppress it, leaving us scarred in adulthood. Many autistics of my generation remember being placed into programs for troubled children with parental encouragement in hopes we’d become “more normal.” We didn’t. Parents have given us bleach enemas, and some of us have died from misguided chelation and other treatments to “cure” our autism.
I don’t blame parents for any of that. They did their best, given the knowledge of the day. But it’s a different day now. The children who grew up being “normalized” can talk about how it affected them, and parents and clinicians of today would be wise to listen.
Autistic voices are finally speaking in large numbers and it’s time to pay attention. No one else knows life with autism. Parents and nonautistic researchers are sometimes listening. Hard as this may be for them to hear, they are always guessing. With autistics speaking out all over the world, that’s no longer good enough.
For the first time, IACC has recognized this in the 2017 Strategic Plan Update. They say it’s time for a paradigm shift in how we do research. We need to focus on the needs of people living with autism today. That’s a realization that I appreciate, and it’s long overdue.
So what’s the answer to why we’ve gotten so little return on our autism research investment: No one asked the autistic people what we wanted. It’s that simple. Had we been able to articulate our challenges, with the framework of knowledge we have today, and had we been listened to, we’d be in a very different place today.
Today is gone, but tomorrow isn’t here yet, and it can be different.
(c) John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Dept. of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (a school for teens with developmental challenges), and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia, and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick. 

 John Elder RobisonJohn Elder Robison is the author of Raising CubbyLook Me in the Eye, My Life with Asperger’s, and Be Different - adventures of a free range Aspergian.  John’s books are sold in a dozen languages in over 65 countries. 

Wednesday, February 1, 2017

No, the Mercury in Vaccines Does Not Cause Autism


 Jordan Gaines Lewis, Ph.D.

With the recent news of President-Elect Trump's talks with Robert F. Kennedy, Jr. to potentially head a new commission on vaccine safety and scientific integrity, many in the scientific and healthcare communities are understandably rattled. Kennedy is a well-known skeptic of vaccine safety, and has previously described the vaccine/autism allegations as such:

“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone. This is a holocaust, what this is doing to our country.”
Mercury is toxic to the human body. It's important, however, to understand how the mercury present in immunizations is different than the mercury in, say, the scary old thermometer in your medicine cabinet.
Thimerosal is a vaccine preservative. Since the early 20th century, small amounts of thimerosal have been used in vaccines to prevent the growth of fungi and bacteria. Thimerosal is mainly composed of ethylmercury. When we hear concerns of mercury toxicity (for example, with the consumption of fish), we are primarily concerned about the compound methylmercury.
Methylmercury (left) and ethylmercury (right) have different chemical structures and are metabolized differently in the body.
Source: Wikimedia Commons
Ethylmercury is metabolized and excreted by the body much faster than methylmercury (half-life of 1 week vs. 6 weeks), meaning methylmercury is more likely to "build up" in the body. You consume higher, longer-lasting, more concerning doses of mercury when you eat a serving of fish than when you get a vaccine.
Many independent epidemiological studies over the last two decades have concluded that the low doses of thimerosal in vaccines are not harmful to infants, and the compound is not present in routine childhood vaccination schedules in the U.S., E.U., and several other countries.
All this said, the current scientific consensus is that there is no compelling evidence linking vaccinations and autism; mercury poisoning does not resemble autism, and rates of autism diagnosis continue to rise despite the removal of thimerosal in many vaccines.
Furthermore, there is no evidence to suggest that the American Academy of Pediatrics' recommended immunization schedule is harmful, or that young children's bodies can't "handle" it. Spacing out vaccines only increases the amount of time by which children are vulnerable to contracting vaccine-preventable diseases. The parents' choice to delay their children's immunizations is what caused the measles outbreak in Disneyland in 2015, with nearly 150 cases.
It's estimated that the MMR (measles, mumps, and rubella) vaccine has saved 17.1 million lives worldwide since 2000. Herd immunity is important for the health of the entire community, as not all children can be vaccinated or will respond satisfactorily to immunizations.
Further reading:

Wednesday, April 6, 2016

Child Prodigies and Autism Spectrum Disorder

Stephen Camarata Ph.D.
Stephen Camarata Ph.D.

Intelligence, Genius and High Achievement Are Not "On" the Autism Spectrum

Posted Apr 01, 2016
April is autism awareness month—so autism and autism spectrum disorder (ASD) will be in the news. Although the recent redefinition of autism as a spectrum condition ensures that children whose disabilities were previously unrecognized and left untreated are better served; it is also important to be mindful of the boundaries for the autism spectrum to avoid potentially devastating mistakes. This is especially important as society seeks to identify autism spectrum disorder at earlier and earlier ages.
Because very young children have widely variable abilities and behavior patterns that are quite different from older children, key clinical markers of autism in school-age children are much less reliable for diagnosing toddlers and preschoolers. For example, a primary symptom of autism is disruptive behavior—and severe tantrums. In school-age children these behaviors are a very reliable indicator for autism. In contrast, nearly every two-year-old displays rather severe tantrums—after all it is called the terrible twos for a reason! It is absurd to place all two year olds on the autism spectrum because of tantrums. Skilled clinicians can indeed accurately diagnose autism in two-year-olds, but it is all too easy to mistake a naturally occurring tantrum as a symptom of autism spectrum disorder.
Similarly, it is all too easy to mistake the traits of precious, highly intelligent toddlers and preschoolers as symptoms of autism spectrum disorder. In their recent book “The Prodigy’s Cousin[1]” Joanne Ruthsatz and Kimberly Stephens provide engaging—and intriguing narratives describing prodigies. They also note that many of these children have siblings or other first-order relatives who are clearly on the autism spectrum, which is certainly true for mathematicians, engineers, and physicists[2].
Also, for the children described in The Prodigy's Cousin, it was not unusual for the prodigies themselves to be initially misidentified as having autism. One potential reason for this is that a child prodigy is quite dedicated to developing the ability that captures her interest—be it music, math, art, dance or scientific thinking. Because of this, prodigies tend to practice these talents over and over again often to the exclusion of activities other children are usually engaged in. Although it may seem simple to distinguish prodigy from autism spectrum disorder, it is noteworthy that children with autism are highly "routine preferring” and often do the same things over and over again rather obsessively. And this is precisely what Ruthsatz and Stephens see in prodigies: these children are very focused on practicing and mastering a particular ability. These authors were very straightforward in stating that prodigy behavior should not be viewed as a form of autism, but it is clear that mistakes were made.
But what if the autism spectrum were actually expanded to include the kind of focused practice required to master talent often seen in child prodigies—and in highly intelligent people? What are the consequences for society if the unique talents of prodigies, geniuses, high achievers—or anyone else with asynchronous child development or an unusual learning style—were to be redefined as symptoms of an autism spectrum disorder and eliminated? There is a very real concern that identifying prodigy as a form of autism spectrum disorder would actually end up derailing the development of extraordinary ability in precocious children. To be sure, some people on the autism spectrum are highly intelligent, but being highly intelligent doesn't necessarily mean a person is on the autism spectrum.
When autism is diagnosed, a relatively strict intervention program is often provided. One goal of this treatment is to diminish obsessive routines. If a child does indeed have autism, this intervention can be highly effective.
But what if a child does not have autism, and is a prodigy instead?  Could treatment designed for autism prevent a math prodigy from developing her unique talents when she is taught to stop “obsessing” on numbers as a cure for her “autism spectrum disorder?”
Before dismissing this notion, bear in mind that many prodigies, high achievers, and highly intelligent individuals are also notoriously noncompliant in addition to being dedicated to developing their special talents. For example, when piano virtuoso Arthur Rubinstein was a child, he smashed a violin when his parents tried to shift his "obsessive" devotion to the piano to other instruments. Would his amazing abilities as a concert pianist have been derailed if his obsession with playing the piano over and over—and his dramatic refusal to comply with requests to be less obsessive —were viewed as a symptom of autism spectrum disorder rather than natural traits of a child prodigy?
Perhaps even more worrisome are recent articles implying that geniuses (and prodigies) such as Albert Einstein, Isaac Newton,[3, 4] Mozart, Bill Gates and many others display signs of autism.  Many many geniuses were temperamental and, at times, difficult to get along with. In addition, perhaps in part because of their high intelligence, they may not necessarily be highly motivated to please teachers or parents or to complete schoolwork they find uninteresting. In his biography, Winston Churchill recalled that "My teachers saw me at once [as being] backwards and precocious, reading books beyond my years and yet at the bottom of the Form [class ranking]. They were offended. They had large resources of compulsion at their disposal, but I was stubborn. Where [whenever] my reason, imagination or interest were not engaged, I would not or could not learn." [5]. Because there are reports that Mr. Churchill also talked late, one can not help but wonder whether his collection of precocious traits, challenging behavior, and slowed communication development would have resulted in an Autism Spectrum diagnosis in modern times.
Perhaps the most devastating consequence of misguided efforts to retrospectively view high intelligence, prodigy, and high achievement as manifestations of autism spectrum disorder is the trivializing effect this has on the extensive impact that severe “classic” autism spectrum disorder often has on families. It is cruel to suggest that parents of children with autism could have somehow shaped the pervasive developmental challenges these children display into becoming the next Mozart, Einstein, Newton, or Gates if only the “right” treatment were provided early enough. This view of autism spectrum disorder also trivializes the Herculean efforts these families make to help their child learn to speak, to be in school, and to regularly cope with severe tantrums and meltdowns.
We can all applaud the efforts to identify—and treat—autism spectrum disorders as accurately, effectively, and as early as possible. But it is also vitally important that prodigy and genius not be redefined as disabilities requiring treatment—rather than unusual gifts to be nurtured.

Friday, April 1, 2016

Transcranial magnetic stimulation for autism: Evidence of benefit?

Switched On, a new memoir by John Elder Robison, has greatly increased interest in transcranial magnetic stimulation (TMS) as an experimental treatment for autism. We’ve asked a leading expert to weigh in on whether there’s enough science behind TMS to recommend its use outside of research studies.
This week’s “Got Questions?” answer is by neuroscientist Lindsay Oberman, director of the Neuroplasticity and Autism Spectrum Disorder Program at Brown University’s Bradley Hospital, in East Providence, Rhode Island. Dr. Oberman is a pioneer in the use of transcranial magnetic stimulation (TMS) in the study of brain plasticity in people with autism spectrum disorder. Brain plasticity refers to the brain’s remarkable ability to modify its own structure and function.
For readers who are not familiar, transcranial magnetic stimulation, or TMS, is a noninvasive procedure that uses electromagnetic fields to stimulate nerve cells, or neurons, in the brain. TMS can be used either to study or to treat neurological and mental health conditions.
When a single session of TMS is applied, researchers can observe the response to the stimulation and use that information to make predictions about how the brain functions. In this way, we use TMS to study the brain. These single session studies are not intended to be therapeutic.
Alternatively, when TMS is applied in repetitive stimulations over several sessions we refer to this as “repetitive TMS,” or rTMS. This technique has the ability to change the response of the brain for several weeks to months after the series of sessions.
By analogy, it’s like asking someone who isn’t a musician to play a song on a piano by showing him or her some sheet music. If you did it once, that may be a way to study a person’s natural ability. But if you did this every day for six weeks (the typical schedule for therapeutic rTMS), the person might learn to play the song on the piano.
In transcranial magnetic stimulation, electromagnetic fields stimulate specific regions of the brain. Image courtesy the Mayo Foundation.
Two decades of TMS research

For more than 20 years, researchers have been studying TMS as a potential therapy for a number of neurological and psychiatric conditions.
Currently the U.S. Food and Drug Administration (FDA) has cleared the use of TMS for the treatment of depression in adults who haven’t been helped by medication. FDA clearance is an important indicator that a treatment can help some patients – as demonstrated in carefully conducted clinical trials.
A growing body of research suggests that TMS can likewise help relieve the symptoms of schizophrenia and improve movement rehabilitation after a stroke. However, it doesn’t yet have FDA clearance for these uses.
TMS for the treatment of autism: Still in its infancy
By comparison, research on TMS as a treatment for autism spectrum disorder (ASD) remains in its infancy. A search on PubMed, for example, turns up 42 journal articles on TMS and autism. But many are either theoretical or review articles or single session research studies. Only 13 of these papers represent clinical trials, and only one was a placebo-controlled trial. (Including a comparison to a placebo, or sham treatment, is important in a study to distinguish true benefits from the effect of expectations.)
Some of these clinical studies have suggested that TMS can help relieve symptoms such as irritability and repetitive behaviors and improve autism-related disabilities in areas such as eye-hand coordination and social skills.
However, for the most part, these clinical studies have involved very small numbers of participants ranging from one to 27 participants. Taken together, all 13 studies involved fewer than 200 participants.
Yet another limitation of our early research is that we’ve focused primarily on certain subgroups such as adult men with ASD but without either intellectual disability or epilepsy (which commonly co-occurs with autism). We’ve excluded people with epilepsy for safety reasons, and most of the early work was in adults. We’re just starting to study TMS with children.
Currently, I know of three ongoing clinical trials using TMS as a treatment for ASD. These include a Canadian study looking for improvements in executive functioning with an expected enrollment of 60 adolescents and young adults with ASD. A French study is looking at possible changes in social cognition and aims to enroll around 50 adults with ASD. And a study in Israel is looking at changes in social interaction with an expected enrollment of 20 children and adolescents with ASD and intellectual disability.
Caution needed
Because of all these limitations, I caution against drawing conclusions from the preliminary results of the TMS studies that I and others have conducted. I know it’s easy to get overly optimistic given the media coverage and web posts about the remarkable responses some people with autism have reported after participating in a TMS study. Sometimes these reports make TMS sound like “the answer” to debilitating autism symptoms.
Questions needing answers
As a researcher, I want to see a number of questions answered before TMS becomes a treatment option for autism outside of a careful research study:
1. What is the appropriate dose?
In other words, how long should the sessions be? How many sessions? How often? At what intensity? Like a drug study, we have to understand how much TMS is needed to lead to behavioral changes and still be safe and tolerable. Does the dose need to be scaled up or down depending on the age of the individual or other co-occurring neurological or mental conditions?
2. Where in the brain should the stimulation be applied and with what frequency? 
3. What behaviors are we hoping to improve?
TMS applied to a single part of the brain isn’t likely to improve all the common symptoms of autism. But it may improve specific symptoms. Currently, it’s not clear which symptoms may be more or less responsive to TMS.
4. Who may be a good candidate for TMS treatment for autism?
To date, studies have largely focused on verbal adults. But TMS may have a greater impact on a younger brain. We need to conduct larger studies that enroll both verbal and nonverbal individuals and children and adults in order to begin identifying the subgroups of people who are most likely to respond to TMS.
6. Do we have clear evidence of benefit from TMS versus a placebo, or dummy treatment?
Only one published study has included a blinded sham control condition. That’s where neither the researchers nor the participant know who’s getting the actual treatment and who’s getting the sham treatment until after the study is over. Therefore, it’s currently unclear how much of the effect reported in the other twelve published studies were due to a placebo effect.
8. Is it ethical to start offering TMS outside of research studies as an “off label” (not FDA-cleared) autism treatment?
Insurance is unlikely to cover a treatment that’s not yet FDA cleared. But countless individuals and families may be desperate for anything that may relieve their or their loved one’s symptoms. I don’t want to see these people spend tens of thousands of dollars for a treatment that we don’t yet know will help – and might make symptoms worse.
Cautious optimism
Despite all the above cautions, I don’t want to give the impression that I don’t see promise for TMS as a future treatment in ASD. Quite the opposite, I continue to focus my research career in this direction.
So while I can’t currently support the use of TMS as a treatment for ASD outside of a research setting, I can promise you that my colleagues and I will continue to wholeheartedly pursue research to answer the questions we’ve raised. Hopefully the end result will be a safe and effective new treatment option for individuals with ASD.
In closing, I want to welcome anyone who has questions or interest in participating in our studies to contact me and my team at loberman@lifespan.org. We would be happy to answer your questions.

Monday, February 1, 2016

How to Change Minds About Vaccine Safety

Highlighting Consensus among Medical Experts Increases Public Support for Vaccines
Vaccines are one of the most effective global public health interventions. From a psychological perspective, we can view the individual decision to vaccinate as a classic social dilemma: if everyone cooperates we will all be better off but it only takes a small group of defectors to quickly ruin it for everyone. If enough individuals in a given population agree to get vaccinated, communities can protect themselves against potentially life-threatening diseases. For example, the smallpox virus was one of the world's most devastating diseases. Thanks to a global immunization campaign coordinated by the World Health Organization (link is external), the disease was officially eradicated in 1980.
Yet, when a small number of individuals decide to go against the societal norm to vaccinate, they (inadvertently) put entire communities at risk. This is so because unvaccinated people tend to cluster together geographically (link is external), which allows a virus to spread and take hold quickly. Fortunately, small outbreaks can often be controlled. What is concerning, however, is that such outbreaks are becoming more frequent. For example, the United States logged a record number (link is external) of measles outbreaks in 2014. It is one thing for people to decide that they are willing to put themselves at risk, it is another to put other communities or even the entire population at risk. The resurgence (link is external)of measles in the United States has been attributed to the impact of so-called "vaccine deniers". To what extent should individual liberties come at the cost of others' well-being?
Given the seriousness of the potential public health risks at stake, the psychological study of why some people decide not to vaccinate is receiving increased attention. It seems unlikely that people use religious, philosophical, or political motives to justify a concerted initiative to willingly put their fellow citizens and children at risk. We accept small risks everyday, from letting our children play outside to riding the bus. Of course, sometimes, the influence of extreme ideologies (particularly in disenfranchised communities) can trump the influence of other societal norms. For the majority, however, vaccine hesitancy is often motivated by influential misperceptions about vaccine risks. Indeed, popular examples (link is external) of misguided notions about how vaccines and the human immune system work range from the idea that vaccines cause autism and that one can catch the actual flu from the flu vaccine to conspiracy theories about "big pharma", government "mind-control" initiatives and a "Western plot" to infect non-Western communities.
Some of these misperceptions can be influential and far-reaching. For example, about 50% of Americans indicate that they are "unsure (link is external)" about whether or not vaccines cause autism. General concerns about childhood vaccine safety have increased over the last decade as well. Although immunization rates are currently high in the United States, it is a slippery slope when people start acting on such misinformation. For example, doctors now frequently receive requests to "delay (link is external)" childhood vaccines. This trend is also evidenced by the astonishing backlash (link is external)against Mark Zuckerberg's recent decision to vaccinate his baby. A functioning democracy requires that the public is well-informed. "If a majority believes in something that is factually incorrect, the misinformation may form the basis for decisions that run counter to a society’s best interest" (Lewandowsky et al., 2011).
Research has shown that it proves incredibly difficult to effectively communicate with the public about vaccine safety. A recent article in the Washington Post (link is external)suggests that people should stop calling anti-vaxxers "dumb" - this seems to be a rather mundane conclusion, clearly nobody likes to be called dumb!  On the other hand, so-called "meta-reviews" of pro-vaccine communication strategies are often inconclusive (link is external)about their general effectiveness. In fact, some studies (link is external)have shown that attempts to correct misperceptions can actually backfire and make people less likely to vaccinate.
Two major issues complicate these efforts:
1) First is the so-called "false media balance". Journalists often follow a professional norm to present (anecdotal) examples about a topic in a seemingly "balanced" pro-and-con fashion. Research (link is external)by some of my colleagues has shown that such media impressions actually fail to emphasize the overwhelming amount of scientific agreement on vaccine safety, which, in turn, strongly influences how people think about the issue.
2) The other major issue is that much (if not most) of our communication efforts are  directed at trying to correct misinformation "myths" with the expectation that people will rationally respond to such a correction. However, research (link is external)in cognitive psychology has taught us that when we are trying to debunk a myth (e.g., that a long time ago, one fraudulent study incorrectly concluded that vaccines cause autism) the memory networks associated with the misinformation are activated and strengthened. Because it takes more cognitive effort for people to update their beliefs in light of new information, such strategies often just end up reinforcing the myth.
In a new study published in BMC Public Health (link is external), my colleagues and I set out to test a different approach: highlighting the level of normative agreement -or consensus- among medical scientists about vaccine safety. The benefit of communicating the extent to which medical experts agree about the safety of vaccines speaks directly to the points above: we correct the false media balance by highlighting the high degree of consensus AND, at the same time, we avoid having to repeat any type of "misinformation".
Consensus information tells us how many experts, friends, or other people we care about agree on a particular issue of importance. We deal with consensus information all the time in daily life, from consensus on what restaurant dish is the most popular to consensus among critics about the quality of a particular movie. People are naturally inclined to pay attention to consensus because consensus cues often signal important information. For instance, think about the restaurant example. There is a good reason why a particular dish is the most "popular", it has some quality that leads most people to enjoy it. In a complex and uncertain world, where we have limited time to decide on a particular course of action, we often have to make strategic "bets" on what decision is going to be the right one. Human reliance on consensus heuristics evolved because they are adaptive for survival. In fact, some recent neuroscientific (link is external)studies actually show that people experience a feeling of pleasure and reward when they learn that their opinions are in line with the (expert) consensus. There is a good reason for this positive association. For example, if 9 out of 10 doctors tell you that you need surgery right away, simply relying on the expert consensus will most likely be in the best interest of your health. Some of my colleagues refer to this notion as the "simple heuristics that make us smart".
In our study (link is external), participants read one of the following treatment messages; "90% of medical scientists agree that vaccines are safe", "90% of medical scientists agree that parents should be required to vaccinate their children" or a combination of both. In the control group, no information was provided (90% is actually a very conservative estimate (link is external)of expert consensus based on national surveys among doctors and medical scientists). In short, we found that after exposure, people (conservatives and liberals alike) were not only substantially more likely to understand that there is a strong consensus among medical experts about vaccine safety, participants were also less likely to think that vaccines cause autism or that childhood vaccines are risky, and more likely to vaccinate their children and support policies that require parents to vaccinate their children.
We generally find that people's perception of the level of consensus among domain experts [medical scientists] functions as a "gateway" to changing other influential beliefs that people hold with regard to important societal issues. In other words, communicating consensus has the potential to correct influential misperceptions while cultivating science-based attitudes toward and public support for vaccinations.
I have written about the psychology of consensus (link is external) before. Of course, I am not suggesting that there is no need or place for people to learn exactly why vaccines do not cause autism or why you cannot catch the flu from a flu shot. The truth is that people care more about certain type of facts than about others and facts with social value (e.g., group consensus) tend to carry more weight. In an uncertain and complex world where people have limited time and attention, communicating the bottom-line is often what counts the most. In this case, that 90% of doctors all agree that approved vaccines are perfectly safe and that it is important for your health that you get yourself and your children vaccinated.

Further Reading
Center for Disease Control (CDC) Global Health - Vaccines and Immunization. Available from: http://​www.​cdc.​gov/​globalhealth/​immunization/​
Gellin, B.G., Maibach, E.W., & Marcuse, E.K. (2000). Do parents understand immunizations? A national telephone survey. Pediatrics, 106(5), 1097–1102.
Gust, D., Weber, D., Weintraub, E., Kennedy, A., Soud, F., & Burns, A. (2008). Physicians who do and do not recommend children get all vaccinations. Journal of Health Communication,13(6), 573–582.
Dubé, E., Gagnon, D., & MacDonald, N.E. (2015). Strategies intended to address vaccine hesitancy: Review of published reviews. Vaccine, 33(34), 4191–4203.
Dixon, G., & Clarke, C. (2013). The effect of falsely balanced reporting of the autism-vaccine controversy on vaccine safety perceptions and behavioral intentions. Health Education Research, 28(2), 352-359.
Lewandowsky, S., Ecker, U.K.H., Seifert, C.M., Schwartz, N., & Cook, J. (2012). Misinformation and its correction: continued influence and successful debiasing. Psychological Science in the Public Interest, 13(3),106–131.
Maibach, E. (2012). Knowing our options for setting the record straight, when doing so is particularly important. Psychological Science in the Public Interest, 13(3),105.
van der Linden S.L., Leiserowitz, A.A., Feinberg, G.D., Maibach, E.W. (2012). The scientific consensus on climate change as a gateway belief: Experimental evidence.    PLoS One 10(2), e0118489.
van der Linden, S.L., Clarke, C.E., & Maibach, E.W. (2015). Highlighting consensus among medical scientists increases public support for vaccines: Evidence from a randomized experiment. BMC Public Health, 15(1), 1207.

Sunday, January 24, 2016

World's Largest Wheelchair Painting

LOS ANGELES, Jan. 22, 2016 /-- History will be in the making at Abilities Expo Los Angeles as hundreds of people with disabilities partake in the creation of the world's largest wheelchair painting using innovative, adaptive art tools from Zot Artz Arts for All.
The annual expo, which takes place on February 5-7, 2016 at the Los Angeles Convention Center (West Hall A), will also feature an impressive line-up of exhibits, workshops, events, celebrities and activities to appeal to people of all ages with the full spectrum of disabilities—including physical, learning, developmental and sensory disabilities.
This artistic undertaking, named the Garden of PossAbilities, will begin as a 2300 square foot blank canvas on the Expo floor. Using unique rollers and stamps temporarily affixed to an individual's wheelchair, the surface will be transformed into a masterpiece through layers of vibrant colors and patterns.
These adaptive art implements, designed by Zot Artz Owner Dwayne Szot, will allow people with disabilities to create art using their mobility device as a giant paint brush. In addition to participating in an historic event, artists will develop motor skills, social and emotional skills, concentration and self-esteem.
"The adaptive art events at Abilities Expo have always been enormously popular, so we are thrilled to offer this opportunity on such a grand, never-before-seen scale," said Lew Shomer, co-owner of Abilities Expo. "Artists come away with a profound sense of accomplishment, which is a thrilling experience for them as well as for their caregivers to witness."
The world's largest wheelchair painting will unfold over the three-day Expo with up to 300 artists using 50 gallons of paint in a rainbow of glowing colors. Participation in creating the Garden of PossAbilities, as well as admission to the Expo, is free. Show hours are Friday 11 am to 5 pm, Saturday 10 am to 6 pm and Sunday 10 am to 2 pm.
"We at Zot Artz studio hope to create awareness and opportunities for individuals with disabilities while fostering creative expression," said Szot. "Come and be a part of posterity, reaching beyond disabilities into abilities in a big, bold and beautiful way!"
For more information, visit www.abilities.com/losangeles.  

SOURCE Abilities Expo


Wednesday, January 13, 2016

Nonprofit Going the Distance to Support People With Autism

Photo - http://photos.prnewswire.com/prnh/20160107/320070
NEW YORK, Jan. 7, 2016 /PRNewswire/ -- As the New Year approaches, Special Citizens has a lot to look forward to in the year 2016. In August, Special Citizens will celebrate its 40-year anniversary of supporting people with Autism Spectrum Disorders.

"Operating for forty years in the human services landscape is a great milestone and this year, we are holding many special events that will commemorate this work and our future development," says, Jessica Zufall, Ph.D. Chief Executive Officer.
How this event works is pretty simple, you register on our website. Starting on January 1st, you can walk or run one mile per day indoor or outdoors. Each day can log your workout through various apps on your phone or connect to your Garmin, Fitbit, Mapmyfitness, or Runkeeper.
If you do not have a device you can use our manual entry feature. Run or walk from anywhere in the world, even on your treadmill. As you log your workouts you will receive Google street views of the Florida Keys.
One of the most popular New Year's resolutions is exercising in order to stay healthy and in shape. What better way to do this by participating in the challenge and supporting people with Autism at the same time?
Besides our Virtual Run, Special Citizens has a variety of events going on. There is our Sing For Autism challenge and our #askmeaboutaustism campaign. Special Citizens will celebrate their 40th anniversary on Monday August 15, 2016 with our first annual Golf outing. For more information click here.
Get registered today for the 40 Miles in 40 Days Virtual Challenge by clicking here!
Special Citizens is a non-profit organization committed to the development and delivery of a comprehensive, integrated system of services, which has as its primary purpose the promotion and attainment of independence, inclusion, individuality, and productivity for adults and children with Autism. 
SOURCE Special Citizens

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Saturday, December 19, 2015

The Aliens Have Landed!

Source: Jessica Kingsley Publishers
Jessica Kingsley PublishersYou can’t go far in reading what people diagnosed with an autism spectrum disorder (ASD) write about themselves before you come across aliens. You soon find them saying things like, “I felt like an alien, as though I had come to earth from somewhere else.” (p. 37 (link is external)) Other autistics have called their disorder “wrong planet syndrome,” (p. 9 (link is external)), and an autistic author who entitled her book Through the Eyes of Aliens (link is external) comments that “Many autistic people affectionately, humorously refer to themselves as aliens. They feel displaced on a vast planet, which has a code of life, and understanding they can’t ever quite subscribe to.” She calls them “mysterious Martians who don’t know the culture of the planet they have been misplaced on.” One of the world’s most eminent autistics, Temple Grandin, was described in an essay by Oliver Sacks entitled An Anthropologist on Mars, and Martian in the Playground (link is external) is the title of an award-winning book whose author recounts the fantasy of extra-terrestrials suddenly appearing to tell her that “It’s all been a dreadful mistake. You were never meant to be here. We are your people and now we’ve come to take you home.” A book for parents of "a child with Asperger syndrome or high-functioning autism" is entitled, Raising Martians from Crash Landing to Leaving Home (above). Perhaps not surprisingly then, an “online resource and community for Autism and Asperger’s” is entitled, WrongPlanet.net (below).
Source: WrongPlanet.net
Science fiction often portrays alien beings as immediately able to understand and to communicate with humans—even to the point of speaking English and having excellent manners! But a moment’s reflection is enough to show that in reality things would probably be very different. Human technology and material culture might be pretty much self-evident to any intelligent being able to travel here or communicate with us, simply because material culture exploits principles of science and technology which are universal. But we have no way of knowing whether the fundamental principles of human behaviour would be as self-evident to an extra-terrestrial species which might be biologically very different from us. It might take some time and careful analysis for aliens to begin to understand what are self-evident realities to us, such as the self, consciousness, or personal feelings. The very idea of the mind might be alien to the aliens, whose initial reaction to human beings might be wholly behavioural and completely lacking in the appreciation of mental factors such as intention, meaning, and emotion. In other words, extra-terrestrials might regard us as we might regard creatures very different from ourselves, such as plants, insects, or bacteria. And at the very least, actual extra-terrestrials, like human anthropologists who visit foreign cultures, would have to learn our languages and understand our cultural conventions: they would be Martian anthropologists on Earth, if you like.
Admittedly, this is just speculation about something that will almost certainly never happen. But there is a striking parallel to be drawn between alien beings and those diagnosed with ASD, as the titles and comments listed above suggest. Like real extra-terrestrials might be expected to be, many autistics are either totally mute or have serious verbal shortcomings. There is usually fluent speech in high functioning forms of ASD such as Asperger’s syndrome, but there are often also difficulties with conversation skills, such as a tendency to be pedantic or to interpret things literally. Even high-functioning autistics often have difficulty in understanding irony and metaphors, or show an inability to see what is funny in a joke—something that would almost certainly be true of actual aliens also, were we ever to encounter them. This is because irony, metaphor, and jokes rely on people’s everyday, common-sense knowledge of the world and other people, and extra-terrestrial visitors to Earth could be expected to be as deficient in this respect—if not more so—as autistics typically are.
In part, this may be because people with ASD often seem to be more interested in things, machines, facts or ideas than they are in people and their affairs, and it is not difficult to imagine that visitors from another planet might also lack the central concern with itself and its doings that is otherwise distinctive of the human race. And again like any actual aliens you could realistically imagine and who would almost certainly be physically very different from us, people with ASD are poor at recognizing and interpreting emotional expressions, gestures, and body language. Just like actual extra-terrestrial visitors to Earth would inevitably be, autistics are outsiders in relation to much of what goes on in normal human communication and are socially isolated and marginalized in their interactions with others. The result is that others perceive them to be weird, childish, or callous, and ask questions like “What planet is he from?” or “Who beamed her down?”
As a result of their unfamiliarity with our world, intelligent aliens would not necessarily show much interest in many things that we find important, but might instead focus their interest on objects that seemed to us peripheral, insignificant, or bizarre. And they might do this with an intensity and single-mindedness that we found hard to understand. Where their own behaviour was concerned, they would probably do many things with a rigour, regularity, and repetitiousness that we might not comprehend in the least—a bit like anthropologists amazing the natives by their insistence on writing everything down, taking photographs, or washing their hands. Autistic people are just like this, with single-minded interest in just one or a small number of things being typical—something which is often allied with a compulsion to stick to routines, avoid change, and engage in repetitious behaviour. This makes them seem not just alien, but incorrigible too: not only living in a world of their own, but to an often rigid time-table, and with fastidious compulsions and weird avoidances which exasperate others and alienate them further from normal human life.
And as if to underline my metaphorical parallel with aliens, Tony Attwood, a leading authority on high-functioning autism, adds that from his clinical experience he considers “that children and adults with Asperger’s syndrome have a different, not defective, way of thinking.” (p. 60 (link is external))
Autistics, in short, could properly be considered as the Earth’s resident extra-terrestrials. The aliens have landed!
(Extracted and condensed from my forth-coming book, The Diametric Mind: Insights into  AI, IQ, society, and consciousness: a sequel to The Imprinted Brain.)

Friday, December 4, 2015

The 10 Personality Disorders

The study of human personality or ‘character’ (from the Greek charaktêr, the mark impressed upon a coin) dates back at least to antiquity. In his Characters, Tyrtamus (371-287 bc)—nicknamed Theophrastus or ‘divinely speaking’ by his contemporary Aristotle— divided the people of the Athens of the 4th century BC into thirty different personality types, including 'arrogance', 'irony', and 'boastfulness'.
The Characters exerted a strong influence on subsequent studies of human personality such as those of Thomas Overbury (1581-1613) in England and Jean de la Bruyère (1645-1696) in France.
The concept of personality disorder itself is much more recent and tentatively dates back to psychiatrist Philippe Pinel’s 1801 description of manie sans délire, a condition which he characterized as outbursts of rage and violence (manie) in the absence of any symp- toms of psychosis such as delusions and hallucinations (délires).
Across the English Channel, physician JC Prichard (1786-1848) coined the term ‘moral insanity’ in 1835 to refer to a larger group of people characterized by ‘morbid perversion of the natural feelings, affections, inclinations, temper, habits, moral dispositions and natural impulses’, but the term, probably considered too broad and non-specific, soon fell into disuse.
Some 60 years later, in 1896, psychiatrist Emil Kraepelin (1856-1926) described seven forms of antisocial behaviour under the umbrella of ‘psychopathic personality’, a term later broadened by Kraepelin’s younger colleague Kurt Schneider (1887-1967) to include those who ‘suffer from their abnormality’.
Schneider’s seminal volume of 1923, Die psychopathischen Persönlichkeiten (Psychopathic Personalities), still forms the basis of current classifications of personality disorders such as that contained in the influential American classification of mental disorders, the Diagnostic and Statistical Manual of Mental Disorders 5th Revision (DSM-5).
According to DSM-5, a personality disorder can be diagnosed if there are significant impairments in self and interpersonal functioning together with one or more pathological personality traits. In addition, these features must be (1) relatively stable across time and consistent across situations, (2) not better understood as normative for the individual’s developmental stage or socio-cultural environment, and (3) not solely due to the direct effects of a substance or general medical condition.  
DSM-5 lists ten personality disorders, and allocates each to one of three groups or ‘clusters’: A, B, or C
Cluster A (Odd, bizarre, eccentric)
Paranoid PD, Schizoid PD, Schizotypal PD
Cluster B (Dramatic, erratic)
Antisocial PD, Borderline PD, Histrionic PD, Narcissistic PD
Cluster C (Anxious, fearful)
Avoidant PD, Dependent PD, Obsessive-compulsive PD
Before going on to characterize these ten personality disorders, it should be emphasized that they are more the product of historical observation than of scientific study, and thus that they are rather vague and imprecise constructs. As a result, they rarely present in their classic ‘textbook’ form, but instead tend to blur into one another. Their division into three clusters in DSM-5 is intended to reflect this tendency, with any given personality disorder most likely to blur with other personality disorders within its cluster. For instance, in cluster A, paranoid personality is most likely to blur with schizoid personality disorder and schizotypal personality disorder.
The majority of people with a personality disorder never come into contact with mental health services, and those who do usually do so in the context of another mental disorder or at a time of crisis, commonly after self-harming or breaking the law. Nevertheless, personality disorders are important to health professionals because they predispose to mental disorder, and affect the presentation and management of existing mental disorder. They also result in considerable distress and impairment, and so may need to be treated ‘in their own right’. Whether this ought to be the remit of the health professions is a matter of debate and controversy, especially with regard to those personality disorders which predispose to criminal activity, and which are often treated with the primary purpose of preventing crime.
1. Paranoid personality disorder
Cluster A comprises paranoid, schizoid, and schizotypal personality disorders. Paranoid personality disorder is characterized by a pervasive distrust of others, including even friends, family, and partner. As a result, the person is guarded and suspicious, and constantly on the lookout for clues or suggestions to validate his fears. He also has a strong sense of personal rights: he is overly sensitive to setbacks and rebuffs, easily feels shame and humiliation, and persistently bears grudges. Unsurprisingly, he tends to withdraw from others and to struggle with building close relationships. The principal ego defence in paranoid PD is projection, which involves attributing one’s unacceptable thoughts and feelings to other people. A large long-term twin study found that paranoid PD is modestly heritable, and that it shares a portion of its genetic and environmental risk factors with schizoid PD and schizotypal PD.
2. Schizoid personality disorder
The term ‘schizoid’ designates a natural tendency to direct attention toward one’s inner life and away from the external world. A person with schizoid PD is detached and aloof and prone to introspection and fantasy. He has no desire for social or sexual relationships, is indifferent to others and to social norms and conventions, and lacks emotional response. A competing theory about people with schizoid PD is that they are in fact highly sensitive with a rich inner life: they experience a deep longing for intimacy but find initiating and maintaining close relationships too difficult or distressing, and so retreat into their inner world. People with schizoid PD rarely present to medical attention because, despite their reluctance to form close relationships, they are generally well functioning, and quite untroubled by their apparent oddness.
3. Schizotypal disorder
Schizotypal PD is characterized by oddities of appearance, behaviour, and speech, unusual perceptual experiences, and anomalies of thinking similar to those seen in schizophrenia. These latter can include odd beliefs, magical thinking (for instance, thinking that speaking of the devil can make him appear), suspiciousness, and obsessive ruminations. People with schizotypal PD often fear social interaction and think of others as harmful. This may lead them to develop so-called ideas of reference, that is, beliefs or intuitions that events and happenings are somehow related to them. So whereas people with schizotypal PD and people with schizoid PD both avoid social interaction, with the former it is because they fear others, whereas with the latter it is because they have no desire to interact with others or find interacting with others too difficult. People with schizotypal PD have a higher than average probability of developing schizophrenia, and the condition used to be called ‘latent schizophrenia’.
4. Antisocial personality disorder
Cluster B comprises antisocial, borderline, histrionic, and narcis- sistic personality disorders. Until psychiatrist Kurt Schneider (1887-1967) broadened the concept of personality disorder to include those who ‘suffer from their abnormality’, personality disorder was more or less synonymous with antisocial personality disorder. Antisocial PD is much more common in men than in women, and is characterized by a callous unconcern for the feelings of others. The person disregards social rules and obligations, is irritable and aggressive, acts impulsively, lacks guilt, and fails to learn from experience. In many cases, he has no difficulty finding relationships—and can even appear superficially charming (the so-called ‘charming psychopath’)—but these relationships are usually fiery, turbulent, and short-lived. As antisocial PD is the mental disorder most closely correlated with crime, he is likely to have a criminal record or a history of being in and out of prison.
5. Borderline personality disorder
In borderline PD (or emotionally unstable PD), the person essentially lacks a sense of self, and, as a result, experiences feelings of emptiness and fears of abandonment. There is a pattern of intense but unstable relationships, emotional instability, outbursts of anger and violence (especially in response to criticism), and impulsive behaviour. Suicidal threats and acts of self-harm are common, for which reason many people with borderline PD frequently come to medical attention. Borderline PD was so called because it was thought to lie on the ‘borderline’ between neurotic (anxiety) disorders and psychotic disorders such as schizophrenia and bipolar disorder. It has been suggested that borderline personality disorder often results from childhood sexual abuse, and that it is more common in women in part because women are more likely to suffer sexual abuse. However, feminists have argued that borderline PD is more common in women because women presenting with angry and promiscuous behaviour tend to be labelled with it, whereas men presenting with similar behaviour tend instead to be labelled with antisocial PD.
6. Histrionic personality disorder
People with histrionic PD lack a sense of self-worth, and depend for their wellbeing on attracting the attention and approval of others. They often seem to be dramatizing or ‘playing a part’ in a bid to be heard and seen. Indeed, ‘histrionic’ derives from the Latin histrionicus, ‘pertaining to the actor’. People with histrionic PD may take great care of their appearance and behave in a manner that is overly charming or inappropriately seductive. As they crave excitement and act on impulse or suggestion, they can place them- selves at risk of accident or exploitation. Their dealings with others often seem insincere or superficial, which, in the longer term, can adversely impact on their social and romantic relationships. This is especially distressing to them, as they are sensitive to criticism and rejection, and react badly to loss or failure. A vicious circle may take hold in which the more rejected they feel, the more histrionic they become; and the more histrionic they become, the more rejected they feel. It can be argued that a vicious circle of some kind is at the heart of every personality disorder, and, indeed, every mental disorder.
7. Narcissistic personality disorder
In narcissistic PD, the person has an extreme feeling of self-importance, a sense of entitlement, and a need to be admired. He is envious of others and expects them to be the same of him. He lacks empathy and readily exploits others to achieve his aims. To others, he may seem self-absorbed, controlling, intolerant, selfish, or insensitive. If he feels obstructed or ridiculed, he can fly into a fit of destructive anger and revenge. Such a reaction is sometimes called ‘narcissistic rage’, and can have disastrous consequences for all those involved.
8. Avoidant personality disorder
Cluster C comprises avoidant, dependent, and anankastic personality disorders. People with avoidant PD believe that they are socially inept, unappealing, or inferior, and constantly fear being embarrassed, criticized, or rejected. They avoid meeting others unless they are certain of being liked, and are restrained even in their intimate relationships. Avoidant PD is strongly associated with anxiety disorders, and may also be associated with actual or felt rejection by parents or peers in childhood. Research suggests that people with avoidant PD excessively monitor internal reactions, both their own and those of others, which prevents them from engaging naturally or fluently in social situations. A vicious circle takes hold in which the more they monitor their internal reactions, the more inept they feel; and the more inept they feel, the more they monitor their internal reactions.
9. Dependent personality disorder
Dependent PD is characterized by a lack of self-confidence and an excessive need to be looked after. The person needs a lot of help in making everyday decisions and surrenders important life decisions to the care of others. He greatly fears abandonment and may go through considerable lengths to secure and maintain relationships. A person with dependent PD sees himself as inadequate and helpless, and so surrenders personal responsibility and submits himself to one or more protective others. He imagines that he is at one with these protective other(s), whom he idealizes as com- petent and powerful, and towards whom he behaves in a manner that is ingratiating and self-effacing. People with dependent PD often end up with people with a cluster B personality disorder, who feed on the unconditional high regard in which they are held. Overall, people with dependent PD maintain a naïve and child-like perspective, and have limited insight into themselves and others. This entrenches their dependency, and leaves them vulnerable to abuse and exploitation.
10. Anankastic personality disorder
Anankastic PD is characterized by excessive preoccupation with details, rules, lists, order, organization, or schedules; perfectionism so extreme that it prevents a task from being completed; and devotion to work and productivity at the expense of leisure and relationships. A person with anankastic PD is typically doubting and cautious, rigid and controlling, humorless, and miserly. His underlying anxiety arises from a perceived lack of control over a world that eludes his understanding; and the more he tries to exert control, the more out of control he feels. In consequence, he has little tolerance for complexity or nuance, and tends to simplify the world by seeing things as either all good or all bad. His relationships with colleagues, friends, and family are often strained by the unreasonable and inflexible demands that he makes upon them.
Closing remarks
While personality disorders may differ from mental disorders like schizophrenia and bipolar disorder, they do, by definition, lead to significant impairment. They are estimated to affect about 10 per cent of people, although this figure ultimately depends on where clinicians draw the line between a ‘normal’ personality and one that leads to significant impairment. Characterizing the ten personality disorders is difficult, but diagnosing them reliably is even more so. For instance, how far from the norm must personality traits deviate before they can be counted as disordered? How significant is ‘significant impairment’? And how is ‘impairment’ to be defined?
Whatever the answers to these questions, they are bound to include a large part of subjectivity. Personal dislike, prejudice, or a clash of values can all play a part in arriving at a diagnosis of personality disorder, and it has been argued that the diagnosis amounts to little more than a convenient label for undesirables and social deviants.

Neel Burton M.D.

Neel Burton M.D
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Hoffmann & Hoffmann Publisher