For Sam, the diagnosis altered everything. Provided a sense of relief that was oceanic. The framing of our relationship changed. I learned about pathological demand avoidance, a pattern of behavior that is still up for debate in the ASD world but that for me represented a seismic OS update. It explained why I would unfailingly refuse to do something when asked, and why a demand or request would trigger an overwhelming sense of panic and certitude that I would only disappoint the person asking. This was me when Sam knocked on my door.
In an excerpt of her new book, Ten Steps to Nanette: A Memoir Situation (out today), Hannah Gadsby talks about her later-in-life diagnosis of autism spectrum disorder. As often happens whenever I read about an autistic person’s experience, there’s stuff here that really resonates with me. Like:
My meltdowns had always been a mystery to me, so when I was finally diagnosed, I was able to reframe the way I thought about my strange little outbursts. For a start, I became far more compassionate toward myself, which probably halved the distress of the occasions. In the scheme of my life, I have not had very many meltdowns, however. I’m more of a shutdown kind of autistic. From the outside, a shutdown looks very similar to a sulky tantrum, but it is nothing of the sort. I don’t have control, for a start. And I am certainly not ruminating on any kind of emotional narrative, because I have gone into fight or flight, but in my body that translates into neither fight nor flight; I just shut down like a maxed-out power grid in the middle of a storm.
And:
The problem is that communication skills are developed atypically in autistic people and, most often, very slowly. I have always had difficulty articulating my needs, but as I have got older, my language and social skills have improved a great deal. My ability to regulate, however, has not, and nor have my sensory sensitivities. My eternal struggle with these distressing disabilities often gives the impression to others that I am moody, reactive and inconsistent. I say I want one thing, then moments later I will say that I need the opposite. This is not a reflection of my character, but rather a reflection of my neurobiological functioning. I am unable to intuitively understand what I am feeling, and I can often take a much longer time to process the effects of external circumstances than neurotypical thinkers. But it is they who get impatient with me, and under that pressure I feel forced to guess my needs before I have had time to process stuff in my own way, and so mistakes are made. I can be cold and not know it. I can be hungry and not know it. I can need to go to the bathroom and not know it. I can be sad and not know it. I can feel distressed and not know it. I can be unsafe and not know it. You know how sometimes you put your hand under running water and for a brief moment you don’t know if it is hot or cold? That is every minute of my life. Being perpetually potentially unsafe is a great recipe for anxiety. And — spoiler alert — anxiety is bad.
I do not feel these things as acutely as Gadsby describes, but I do feel them — moodiness, sensory sensitivity, emotional shutdowns, difficulty understanding what I’m feeling, and taking a long time to process things. This line: “…under that pressure I feel forced to guess my needs before I have had time to process stuff in my own way, and so mistakes are made” <— woooooo boy I feel that so so much. Maybe, just maybe, he thinks to himself, this is why I’ve worked by myself for the past 16+ years.
This short film by Joris Debeij features Jordan Kamnitzer talking about his experience as someone who is on the autism spectrum.
Autism affects my life in several ways. I have to, sort of, know on a repetitious level, like, how to do things accordingly. Change is very difficult in a routine.
It’s hard to interact with people. I’d like to get to know people better. I try to listen very hard and try to become interested and gradually be friends. Sometimes it does work, but sometimes I know the subject matters are sort of limited with normal individuals.
I’ve had cases where I felt turned down, but silently. I sometimes feel disappointed and hurt, then I retreat and go back into my own indifferent world.
In a related essay, Eli Gottlieb writes about the film and his brother Joshua, who is severely autistic:
As a documentary, though, “Perfectly Normal” is necessarily a partial version of the truth. When Joshua and I were filmed for a short documentary, for example, I was struck by how the film showed a higher-functioning version of the person than the one I knew. That was because, like many people with developmental disabilities, my brother had evolved a repertoire of stock responses to social situations. Glimpsed serially in a 15 minute film, these responses added up to a semblance of a socially appropriate person, and skipped the endless testing questions and self-involved rhetorical loops that make him so exhausting to spend time with. (The film, “The Inviolable Bond,” can be seen here.)
Jordan and his girlfriend, Toni, obviously have another life than the one revealed in the film.
I had similar thoughts while watching. How can we know what it’s like in Kamnitzer’s head, especially when the director and editor have so much input into how the film is constructed? At the same time, he definitely said some things about his experience that resonate with me and my experience of the world. It’s not the first time this has happened in recent years. I’ve never been identified as such by a professional, but I would not be surprised to find myself somewhere on the autism spectrum. It would certainly explain some things!
What is autism? A lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more-and the future of our society depends on our understanding it. WIRED reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years.
“NeuroTribes” is beautifully told, humanizing, important. It has earned its enthusiastic foreword from Oliver Sacks; it has found its place on the shelf next to “Far From the Tree,” Andrew Solomon’s landmark appreciation of neurological differences. At its heart is a plea for the world to make accommodations for those with autism, not the other way around, and for researchers and the public alike to focus on getting them the services they need. They are, to use Temple Grandin’s words, “different, not less.” Better yet, indispensable: inseparably tied to innovation, showing us there are other ways to think and work and live.
Silberman was born in New York, the son of two teachers who were communists and anti-war activists. “I was raised to be sensitive to the plight of the oppressed. One of the things I do is frame autism not purely in a clinical or self-help context, but in a social justice context. I came to it thinking I was going to study a disorder. But what I ended up finding was a civil-rights movement being born.”
He says the fact he is gay also conditioned his approach. “My very being was defined as a form of mental illness in the diagnostic manual of disorders until 1974. I am not equating homosexuality and autism — autism is inherently disabling in ways that homosexuality is not — but I think that’s why I was sensitive to the feelings of a group of people who were systematically bullied, tortured and thrown into asylums.”
A major study conducted by the Harvard School of Public Health has found a significant link between autism and the exposure of the mother to high levels of air pollution during the third trimester of pregnancy.
Researchers focused on 1,767 children born from 1990 to 2002, including 245 diagnosed with autism. The design of the study and the results rule out many confounding measures that can create a bias, Weisskopf said. The researchers took into account socioeconomic factors that can influence exposure to pollution or play a role in whether a child is diagnosed with autism.
The fact that pollution caused problems only during pregnancy strengthened the findings, since it’s unlikely other factors would have changed markedly before or after those nine months, he said in a telephone interview.
The ultimate cause of autism remains a mystery in most cases, said Charis Eng, chairwoman of the Lerner Research Institute’s Genomic Medicine Institute at the Cleveland Clinic in Ohio. While the Harvard study isn’t definitive and the findings could be coincidental, it’s not likely given the large size and the precise results, she said in a telephone interview.
“The truth is there has to be gene and environmental interactions,” said Eng, who wasn’t involved in the study. “I suspect the fetus already had the weak autism spectrum disorder genes, and then the genes and the environment interacted.”
It would be a huge help (and I am not in any way being facetious about this) if Jenny McCarthy and all the other celebrity “vaccines cause autism” folks threw their weight behind cleaning up pollution the way they attacked vaccination. Redeem yourselves. (via @john_overholt)
According to many psychiatrists and brain experts, about one in 10 autistic children sheds symptoms before adulthood. Duke researcher Geraldine Dawson explains that “there is this subgroup of kids who start out having autism and then, through the course of development, fully lose those symptoms.” Now they just have to figure out why. From the NYT Magazine: The Kids Who Beat Autism.
To his father, Lars seemed less defined by deficits than by his unusual skills. And those skills, like intense focus and careful execution, were exactly the ones that Sonne, who was the technical director at a spinoff of TDC, Denmark’s largest telecommunications company, often looked for in his own employees. Sonne did not consider himself an entrepreneurial type, but watching Lars — and hearing similar stories from parents he met volunteering with an autism organization — he slowly conceived a business plan: many companies struggle to find workers who can perform specific, often tedious tasks, like data entry or software testing; some autistic people would be exceptionally good at those tasks. So in 2003, Sonne quit his job, mortgaged the family’s home, took a two-day accounting course and started a company called Specialisterne, Danish for “the specialists,” on the theory that, given the right environment, an autistic adult could not just hold down a job but also be the best person for it.
I particularly liked Tyler Cowen’s observations:
Tyler Cowen, an economist at George Mason University (and a regular contributor to The Times), published a much-discussed paper last year that addressed the ways that autistic workers are being drawn into the modern economy. The autistic worker, Cowen wrote, has an unusually wide variation in his or her skills, with higher highs and lower lows. Yet today, he argued, it is increasingly a worker’s greatest skill, not his average skill level, that matters. As capitalism has grown more adept at disaggregating tasks, workers can focus on what they do best, and managers are challenged to make room for brilliant, if difficult, outliers. This march toward greater specialization, combined with the pressing need for expertise in science, technology, engineering and mathematics, so-called STEM workers, suggests that the prospects for autistic workers will be on the rise in the coming decades. If the market can forgive people’s weaknesses, then they will rise to the level of their natural gifts.
As if there was actually more evidence needed that vaccines don’t cause autism, the 1998 British study that linked autism to childhood vaccines was recently discovered to be an elaborate fraud. Not just incorrect, a fraud.
An investigation published by the British medical journal BMJ concludes the study’s author, Dr. Andrew Wakefield, misrepresented or altered the medical histories of all 12 of the patients whose cases formed the basis of the 1998 study — and that there was “no doubt” Wakefield was responsible.
“It’s one thing to have a bad study, a study full of error, and for the authors then to admit that they made errors,” Fiona Godlee, BMJ’s editor-in-chief, told CNN. “But in this case, we have a very different picture of what seems to be a deliberate attempt to create an impression that there was a link by falsifying the data.”
The debate is essentially over and the final word is in: vaccines do not cause autism. The results of a rigorous study conducted over several years were just announced and they confirmed the results of several past studies.
Basically, the final two groups that were studied consisted of 256 children with ASD [autism spectrum disorders] and 752 matched controls. One very interesting aspect that looks as though it were almost certainly placed into the experimental design based on concerns of anti-vaccine advocates like Sallie Bernard is a group of children who underwent regression. Basically, the study examined whether there was a correlation between ASD and TCV [thimerosal-containing vaccines, i.e. mercury-containing vaccines] exposure. It also examined two subsets of ASD, autistic disorder (AD) and ASD with regression, looking for any indication whether TCVs were associated with any of them. Regression was defined as:
“the subset of case-children with ASD who reported loss of previously acquired language skills after acquisition.”
Also, when adding up total thimerosal exposure, the investigators also included any thimerosal exposure that might have come prenatally from maternal receipt of flu vaccines during pregnancy, as well as immunoglobulins, tetanus toxoids, and diphtheria-tetanus. In other words, investigators tried to factor in all the various ideas for how TCVs might contribute to autism when designing this study.
So what did the investigators find? I think you probably know the answer to that question. They found nothing. Nada. Zip. There wasn’t even a hint of a correlation between TCV exposure and either ASD, AD, or ASD with regression:
“There were no findings of increased risk for any of the 3 ASD outcomes. The adjusted odds ratios (95% confidence intervals) for ASD associated with a 2-SD increase in ethylmercury exposure were 1.12 (0.83-1.51) for prenatal exposure, 0.88 (0.62-1.26) for exposure from birth to 1 month, 0.60 (0.36-0.99) for exposure from birth to 7 months, and 0.60 (0.32- 0.97) for exposure from birth to 20 months.”
The last result is a bit of an anomaly in that it implies that exposure to TCVs from birth to 1 month and birth to 7 months actually protects against ASD. The authors quite rightly comment on this result thusly:
“In the covariate adjusted models, we found that an increase in ethylmercury exposure in 2 of the 4 exposure time periods evaluated was associated with decreased risk of each of the 3 ASD outcomes. We are not aware of a biological mechanism that would lead to this result.”
So get your kids (and yourselves) vaccinated and save them & their playmates from this whooping cough bullshit, which is actually killing actual kids and not, you know, magically infecting them with autism. Vaccination is one of the greatest human discoveries ever — yes, Kanye, OF ALL TIME — has saved countless lives, and has made countless more lives significantly better. So: Buck. Up.
Jonah Lehrer profiles Clay Marzo, a top surfer who also happens to be on the autism spectrum, which has been useful in focusing his attention on surfer but is also a challenge.
It’s like everyone else has a bucket for dealing with people and I only got a cup. When my cup gets too full, then I shut down.
Autism is often described as a disease or a plague, but when it comes to the American college or university, autism is often a competitive advantage rather than a problem to be solved. One reason American academe is so strong is because it mobilizes the strengths and talents of people on the autistic spectrum so effectively. In spite of some of the harmful rhetoric, the on-the-ground reality is that autistics have been very good for colleges, and colleges have been very good for autistics.
Stay Connected