“I would like to point out that this is not an article to blame mothers but a simple (non-technical) analysis, the result of personal experiences, therefore to be read in a narrative and non-scientific way, on the other hand I would not have the necessary qualifications.”
I am the father of three splendid boys, two of those born of a second marriage. One of the two youngest will turn twelve in four days, diagnosed in autism spectrum when he was 3 years old. The mother, never diagnosed (also because she refuses every test) in my opinion with deep teenage borderline wounds.
Borderline Personality Disorder (BPD)
Is a condition characterized by difficulties regulating emotion. This means that people who experience BPD feel emotions intensely and for extended periods of time, and it is harder for them to return to a stable baseline after an emotionally triggering event.
This difficulty can lead to impulsivity, poor self-image, stormy
relationships and intense emotional responses to stressors. Struggling
with self-regulation can also result in dangerous behaviors such as
self-harm (e.g. cutting).
It’s estimated that 1.4% of the adult U.S. population experiences BPD. Nearly 75% of people diagnosed with BPD are women. Recent research suggests that men may be equally affected by BPD, but are commonly misdiagnosed with PTSD or depression.
Autism is related to emotional disorder
I lived for more than 10 years with the mother of my 2 children and after the first apparently “normal” times, the borderline personality manifested itself. This led me to try to understand the reasons and the causes of all this, reading and informing myself, about this type of disorder that destroyed the relations of this woman at the same speed as everyone could fall in love with her.
Over time, I learned to recognize this kind of personality and at the same time for obvious reasons, I met parents of other autistic children. The thing that struck me at the beginning was that, the most part of the parents were single parents and those that were not, presented with evidence the presence of the man, subordinate to the woman. Clearly in the rare cases of couples, the man appeared as a second-rate figure. I wouldn’t want to bore you too much with this story, I promise you I’ll follow up on the next posts. Follow me!
When people become stressed, their bodies can respond by sweating.
Now, researchers at the University of Missouri are monitoring how much
adolescents severely affected by autism sweat in order to better
understand when behavioral issues, such as aggression, are likely to
Bradley Ferguson analyzed the stress levels of eight
adolescents who are severely affected by autism spectrum disorder at The
Center for Discovery, a residential facility in New York that provides
advanced care and research for individuals with complex conditions.
Using wrist and ankle monitors, Ferguson found that there was a rise in
the body’s electrodermal activity – which results from increased levels
of sweat – 60% of the time before an individual showed behavioral
“A spike in electrodermal activity is telling us that the
individual’s body is reacting physiologically to something that is
stressful, which could be their internal state, something in the
environment, or a combination of the two,” said Ferguson, assistant
research professor in the departments of health psychology, radiology
and the Thompson Center for Autism and Neurodevelopmental Disorders. “If
parents or caregivers are notified ahead of time that their child’s
stress levels are rising, they might have a chance to intervene and
de-escalate the situation before problem behaviors occur.”
explained that possible intervention methods could include removing the
child from the environment or activity that is causing the stress, as
well as providing access to an item that the child enjoys interacting
with in an effort to calm them.
“Individuals who are severely
affected by autism spectrum disorder are often unable to verbally
communicate their discomfort when they become stressed,” Ferguson said.
“However, their body still responds to stressors just like anyone else.
Therefore, being alerted of increases in electrodermal activity can
allow parents and caregivers to intervene prior to engagement in problem
behavior with the goal of ensuring the health and safety of those
Ferguson collaborated on the study with David
Beversdorf, a professor of radiology, neurology and psychology in the MU
College of Arts and Science as well as principal investigator of the
Cognitive Neuroscience Laboratory in the MU School of Medicine. Ferguson
also collaborated with Theresa Hamlin, Johanna Lantz, and Tania
Villavicencio at The Center for Discovery, and John Coles at
Calspan-University of Buffalo Research Center and The State University
of New York at Buffalo.
“Important work is being done to try to
identify predictors for when a person with autism is at greatest risk of
having a behavioral episode,” Beversdorf said. “This research
highlights the individual variability in this response that must be
considered, and may also have implications for individualized treatment
approaches moving forward.”
the association between electrodermal activity and problem behavior in
severe autism spectrum disorder: A feasibility study,” was published in Frontiers in Psychiatry.
study was funded by the New York State Center of Excellence, New York
State Department of Health and Office for People with Developmental
Disabilities, as well as private monies donated to The Center for
Discovery. The content is solely the responsibilities of the authors and
does not necessarily represent the official views of the funding
The Department of Health Psychology is in the MU School
of Health Professions, and the Department of Radiology is in the MU
School of Medicine.
A team of NIH-funded researchers at Stanford University Medical
School has found that children with autism improved measurably on a test
of socialization and learning when their therapy included an at-home
intervention with Google Glass. Google Glass is a headset worn like
eyeglasses that provides augmented reality on a miniature screen, with
sound. The smart system of eye wear and mobile-phone-based games helped
the children with autism understand emotions conveyed in facial
Autism is a complex neurological and developmental
spectrum disorder that affects how children interact with others,
communicate, and learn. Many children affected by autism spectrum
disorder (ASD) are unable to discern facial expressions, so miss out on
important cues that aid in learning and socialization.
Stanford team, led by Dennis P. Wall, Ph.D., associate professor of
Pediatrics, Psychiatry and Biomedical Data Sciences, used Google Glass’s
built-in camera along with software customized to run on a smart phone
as an intervention that care givers used with their children at home to
supplement clinic-based therapy. The study was published March 25,
2019, in JAMA Pediatrics.
“Technology can be a terrific
asset to the therapy process, for both physical and neurodevelopmental
gains,” said Tiffani Lash, Ph.D., director of the NIBIB programs in
Connected Health (mHealth and Telehealth), and Point-of-Care Technologies. “This is a heartwarming achievement and a promising example using a bioengineering approach.
The innovative software and hardware solution coupled with the
therapeutic component meets a dire need for many children and their
Google Glass is lens-less, non-invasive, and
peripheral—sitting off to the right side of view for the child. “The
system acts as a true augmentation to their reality, keeping them in
their natural social world, as opposed to taking them out of it,” Wall
said. “In contrast to virtual or mixed reality, augmented reality is
potentially a powerful vehicle through which we can teach children
social skills to rescue some of these deficits early in their
A camera in the device captures the facial
expression of family members in the glasses’ field of view, reinforcing
what the child sees by providing an image and audio prompt. It detects
up to eight emotions: happy, sad, angry, scared, surprised, disgusted,
“meh,” and neutral. The glasses are wirelessly connected to a smartphone
device that may be operated in three different play modes. There is
‘find the smile’ game, where the child is prompted to say something that
prompts an expression in the family member’s face; the ‘guess the
emotion’ game, where the family member asks the child to guess the
emotion from the family member’s face; and free play, an unstructured
mode of identifying facial expressions.
The device also records a
video that parents can observe at a later time to monitor the progress
that their child makes with the activities. “Our hope was that the video
playback would be a good source of reinforcement learning with the
children,” Wall said. “It provides the opportunity for the learner to
focus in on certain human emotions that they may or may not be getting
right, so they might become more adept at detecting those emotions in
The researchers recruited 71 children between the ages
of six and 12 who all had been enrolled in a program of applied
behavioral analysis therapy—the standard care for most children with
ASD. Experts recommend 20 hours per week of the standard therapy, in
which the child interacts with a therapist who leads learning activities
to improve social, motor, and verbal behaviors, as well as reasoning
skills through observation and positive reinforcement. The authors cite
the current cost for this standard therapy to be between $40,000 and
$60,000 per year, noting that parents can often wait up to 18 months for
their child to gain access to the therapy.
Experts suggest that
it is important for children with ASD to receive a diagnosis early—which
can be assessed by the age of two—so that children can begin treatment
as early as possible. According to the authors, learning aids such as
the type tested in the study could begin to address this difficult
challenge of accessing therapy more immediately, outside the clinic.
the 71 enrolled in the study, 40 children also received the augmented
reality device to play the programmed games or freely play during
20-minutes sessions, four times per week. After six weeks, the team
assessed all 71 children on a standard socialization scale.
researchers found that children receiving the smart-glasses intervention
along with standard therapy scored significantly better in the
post-study assessment than those in the control group. Children who used
the smart glasses improved 4.58 points on the standard scale above
those who did not use the Google Glass intervention. Authors unrelated
to the work by Wall and colleagues recently published in Autism Research
that changes of 2 to 3.75 points on the scale represent a clinically
“This is based on a statistically rigorous
approach to the analysis of the data,” Wall said. “We should be excited
about the result. While the overall effect is modest, the positive
change seen in the treated children is significant and points to a new
direction that could help more children get the care they need, when
they need it.”
Wall noted that the device represents a short-term
learning aid and predicts that in the not-too-distant-future there will
be a wider array of available augmented reality wearables. “After a
period of time, they take the glasses off and they grow on their own
into more complex social scenarios.”
Though a playful
intervention, families in the treatment group missed a portion of the
prescribed hours in which to practice with Google Glass, and most
preferred the structured games over the unstructured free-play option.
But the activity was positively received to the point that children who
participated in the study created a new name for the tool, calling it
Superpower Glass, a moniker the authors adopted in writing their report
on the study. The researchers have begun to plan for a larger, follow up
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.
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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.
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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 Robison is the author of Raising Cubby, Look 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.
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.
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 One10(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.
You 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).
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.)
Daniel J. Siegel M.D. Last month was Autism Awareness month and I’m writing today to remind us that autism continues to be a compelling global issue that consumes the tireless efforts of families and professionals throughout the year. In our human family, there are many ways the now seven billion (and rising) of us live in the world. Our culture shapes our communication with each other interconnecting us across the planet in our fast-moving digital age. Human societal change unfolds as cultural evolution influences us by way of how our interactions with each other shape us across the generations. Genetic evolution, in contrast, is shaped by how our DNA (and the epigenetic non-DNA molecules shaping gene expression) is passed to us from our parents and shapes how our body grows and functions. One part of that body is our brain, composed of the basic cells, our neurons. And since the manner in which our neurons link with each other through synaptic connections shapestress in our mother’s womb, the experiences we ourselves have in and out of the womb—all these factors shape our neural architecture. s how the brain functions, many factors can influence “who we become.” DNA itself and the epigenetic regulatory molecules we inherit, exposure to toxins, We can observe variations in neural architecture through advances in technology which enable us to see that, for some individuals, an “atypical” neural pattern emerges in which the brain is larger even in utero (Eric Courchesne PhD (link is external)), and then continues to show more neurons but less differentiated connections (Marcus E. Raichle (link is external)). Our term for this “condition” or neurological variation from “typical” development is Autism Spectrum. Though some would formally call this a “disorder,” it is important to state that challenges to adapting to our common world are experienced by individuals with this neurological set-up. I recently had the opportunity to explore autism spectrum issues with a number of clinicians who collectively have had well over two hundred years of experience working with “people on the spectrum.” When I trained in pediatrics before moving over to psychiatry, autism was four in ten thousand individuals—but now, with changing criteria, we see the incidence on the average as 1 in 68 individuals (CDC (link is external)). April was Autism Awareness Month, such a high number reminds us of how important understanding what this variation in our typical human family’s neurological development really means for all of us—those on the spectrum, near it in themselves, and living with individuals along this continuum. The first important point is to note that studies suggest that when these new criteria are applied across the lifespan, the frequency of occurrence of being on the spectrum is actually fairly uniform. What this means is that if you are in your seventies, or sixties, or fifties, or forties, for example, you are just about as likely be on the spectrum (link is external) (a bit more than one percent chance) as a child or adolescent is growing up today. So while we need to look for “causes” we need to stay calm in the face of our understandable distress that there is a huge epidemic unfolding. That being said, even if the increase that might really be there is less than what we thought, we still need to think deeply about what might be the most helpful strategies for families and individuals struggling with this spectrum of challenges. So here’s what I’ll summarize is the collective wisdom of the writings and input of those individuals who’ve been living with or devoting their professional lives to being on the spectrum. The major issues are three fold: 1. Social communication; 2. Sensory Integration; and 3. Emotional Regulation. These three may actually be best understood as manifestations of the same fundamental issue. One way to sense their deep connections is the following view, inspired by a number of individuals who have described their inner experience of “being on the spectrum” and supported by a breadth of clinical observation. With input to the senses—sight, hearing, taste, smell, touch—creating an overwhelming flood of disparate elements all at once in one’s inner mental life, anything that can decrease that flood of autonomic over-arousal can be sought. For some, this sensory integration challenge is particularly prominent not so much with the external senses, but the social sense—the input from other individual’s inner lives. We are inherently social creatures, and the social world of others is registered in the brain in ways that, if not filtered and processed well, can be flooding. This overwhelming sensory input can lead to the avoiding of direct face-to-face communication and eye contact, diminishing social situations in general, and also by finding sensory stimuli that can be controlled, like twirling objects or staring at lights. In this way, atypical behaviors that are often called “self-stimulation” may actually be a form of self-soothing. Those isolating behaviors that are thought of as social avoidance may actually be adaptive strategies for self-regulation as well. Without the experience of social interactions, however, the needed expertise derived from repeated engagement with others leaves someone on the spectrum without the practice they need to develop competence as social communicators. And so studies that have suggested impairment to social systems such as the mirror neuron system or decreased fusiform gyrus activation to facial stimuli may in fact be lack of use to reduce flooding (Susan Bookheimer (link is external)). Using these scientific findings, we can imagine, create, and implement new approaches to helping those with these three challenges in social communication, sensory integration, and emotion regulation to find a way to have the constructive social engagements that will build the brain in the most adaptive and integrative ways, supporting healthy development from the earliest years onward. The time is now to make such strides in both our cultural understanding and practical application of science to support our human family across the spectrum of our varied and challenging lives.