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Asperger Syndrome: A Love Story by Sarah Hendrickx, Keith Newton
If, added to this, you have a small or non-existent peer group, it can be impossible to establish if your desires, feelings and practices are ‘normal’ or even acceptable, because there is no one to share with or ask. Given that some people with AS are intensely private and do not share information willingly, this can exacerbate the difficulty. Someone with AS may wonder: How do I know if others with AS experience the same discomforts or pleasures? If I cannot compare myself to the neuro-typical (NT) population, which I do not feel an affinity to, how do I know if I am the only one who feels this way? How do I find a partner if I have no one to ask how to do it? Do others feel the same anxiety, fear and loneliness? Do others feel joy and contentment in their own company? What are the motivations behind relationship choices and sexual behaviour? Are they very different for those with AS than for anyone else?
The whole business of sexuality and interpersonal relations is confusing and fraught with complex and subtle intentions that require decoding (Hénault 2006). 15 16 / Love, Sex and Long-Term Relationships This chapter will focus on how people are finding and choosing potential partners, and it will include comments about how their experiences have affected them. Where to look An initial difficulty may be that someone with AS has a more limited social network than a neuro-typical (NT) person. Some people with AS have no one whom they could describe as a ‘friend’ and, given that any social opportunity is a possible chance of meeting someone, the fewer the social contacts, the fewer the invitations and the fewer the possibilities of finding a partner. We live in a social world full of signs and signals, and assumptions that everyone understands all these. The majority of NT people do understand most of them, but they still get confused and often make mistakes when reading other people.
This is an ability that develops in small children who, as they grow, begin to realise that they are not the only people in the world, and that others have different thoughts and knowledge from their own. Many adults with AS can find it very difficult to anticipate and comprehend that a partner may have different emotional needs. Many AS people express bewilderment at the emotional reactions of their neuro-typical (NT) partners. They may 31 32 / Love, Sex and Long-Term Relationships choose to do nothing in response to emotional outbursts rather than risk doing the wrong thing and unwittingly upsetting their partner further. Often the ‘doing nothing’ is exactly what makes things worse because this can be perceived as uncaring and cold to an NT partner. Doing something is usually better than doing nothing.
There is a definite lack of literature available to assist people with AS in understanding the nature of relationships and how to go about developing and maintaining one. This is in contrast with the wealth of literature available for neurotypical people – just one of a multitude of examples of how poorly recognized, understood, and supported the needs of people with AS are. It is the duty of a just society to ensure that with the passage of time these needs are met, and from the perspective of people with AS and their families, the sooner the better. With written accounts by people with AS becoming more widely published the platform upon which to build better and more appropriate support services will grow stronger. It is then down to the neurotypical population to learn from the growing literature, and to use that platform to provide that support as and when it is needed. There is nothing, absolutely nothing, inherently wrong with having AS.
(See Useful Contacts.) Terminology used in this guide Aspie – The target group for the guide. This refers to an able, high functioning adult with Asperger’s syndrome, however, the book can be used for lower functioning adults on the autistic spectrum with support from a support worker, carer or trusted friend. NTs – a term used for the purposes of writing referring to mainstream neurologically ‘normal’ (neurotypical) individuals. AS – Asperger’s syndrome. Partner – a general term used for the purpose of writing for boyfriend, girlfriend or mate and to avoid cultural, sexuality, racial, regional, gender and related differences. ASD – Autistic Spectrum Disorder. Stims – self-stimulatory behaviour: repetitive motor or vocal mannerisms engaged in by people with ASDs. They are usually used to either calm or excite the nervous system and often as a response to strong emotion. 2 Chapter 1 Asperger’s Syndrome and Relationships: The Reality The science bit Aspies are seen to view the world in a logical, scientific and intellectual way rather than an innate way.
I have thought a lot about this issue over the past year or two and I tend to change my mind quite often. I suppose with no experience of either situation, then I cannot say for sure and of course, everyone is different, AS or not. My general thoughts are that I feel a relationship with an understanding person, without AS, would be preferable. When I’m functioning well, I am able to socialize comfortably with neurotypical friends and acquaintances and I imagine that having a partner who is slightly more outgoing than me could be beneficial for me. 70 Until I became a university student, I attended an all-boys school between the ages of 12 and 18. Before 12, I wasn’t really mature enough to understand the concept of love and relationships, however, since coming to university this issue has led me into a lot of depression.
Oryx and Crake by Margaret Atwood
Demi-autistic, genetically speaking; single-track tunnel-vision minds, a marked degree of social ineptitude – these were not your sharp dressers – and luckily for everyone there, a high tolerance for mildly deviant public behaviour. More than at HelthWyzer? asked Jimmy. Compared to this place, HelthWyzer was a pleebland, Crake replied. It was wall-to-wall NT s. NT s? Neurotypicals. Meaning? Minus the genius gene. So, are you a neurotypical? Jimmy asked the next week, having had some time to think this over. Also to worry about whether he himself was a neurotypical, and if so, was that now bad, in the gestalt of Crake? He suspected he was, and that it was. But Crake never answered that one. This was his way: when there was a question he didn’t want to address, he acted as if it hadn’t been asked. You should come and see this joint, he told Jimmy in late October of their sophomore year.
He couldn’t see eating a ChickieNob. It would be like eating a large wart. But as with the tit implants – the good ones – maybe he wouldn’t be able to tell the difference. “They’ve already got the takeout franchise operation in place,” said Crake. “Investors are lining up around the block. They can undercut the price of everyone else.” Jimmy was becoming annoyed by Crake’s way of introducing him – “This is Jimmy, the neurotypical” – but he knew better than to show it. Still, it seemed to be like calling him a Cro-Magnon or something. Next step they’d be putting him in a cage, feeding him bananas, and poking him with electroprods. Nor did he think much of the Watson-Crick women on offer. Maybe they weren’t even on offer: they seemed to have other things on their minds. Jimmy’s few attempts at flirtation got him some surprised stares – surprised and not at all pleased, as if he’d widdled on these women’s carpets.
The Book of Woe: The DSM and the Unmaking of Psychiatry by Gary Greenberg
Albert Einstein, Asperger Syndrome, back-to-the-land, David Brooks, impulse control, invisible hand, Isaac Newton, John Snow's cholera map, late capitalism, Louis Pasteur, McMansion, meta analysis, meta-analysis, neurotypical, phenotype, placebo effect, random walk, statistical model, theory of mind, Winter of Discontent
Now she’s telling me about a benefit she did not mention in her talk: the way the Asperger’s label changed her sense of herself. “Spending time in an environment where the diagnosis is embraced as a difference, I started to see my diagnosis differently.” The fact that it wasn’t a “mental illness,” at least not by her definition, had become good news, a “gift” even. There were advantages to not being neurotypical, as people with Asperger’s sometimes describe the rest of us. “There are certain things that neurotypical women in particular are obsessed with, shoes and clothes and makeup, that I’m very glad I’m not,” she said, adding that it isn’t just the girly preoccupations she was pleased to be relieved of. “In general, I’m very content with being completely outside of the popular culture fray.” Her diagnosis had helped her to do what is demanded of all of us but comes easier to some than others: to build a self out of the raw materials of nature and nurture.
A parent called them “perfect counterfeit bills,” convincing facsimiles of normal children until they tried to engage others. Fred Volkmar weighed in, saying that “their social interactions are a disaster.” But Osborne had some good news to report. Although, as the school director said, “everything has to be taught to them,” it was proving possible to do that. In classrooms, support groups, and doctors’ offices, Asperger’s patients were learning how to negotiate the neurotypical world. A teacher demonstrated how her students had memorized facial expressions so they could read other people’s signals. With techniques like this, according to Osborne, “Asperger’s children can at least learn to imitate social behavior that other kids learn intuitively.” Like Frankenstein’s monster observing human life through a window, they were forced to watch the rest of us from a distance.
And its charms are on the increase, at least according to the Aspie who predicted to Osborne that “society will actually become more and more dependent on people with Asperger’s to usher it through the difficulties ahead.” That was more than a decade ago, and since then, interaction has come to rely less and less on the nonverbal cues that Aspies are so bad at decoding and more and more on the tablets and handhelds, the binaries of emoticons and tweets, that they are more suited to. While the neurotypical among us grow more and more bewildered by the barrage of information fed to us by our devices, the burdens of Asperger’s, at least in the view of some of the diagnosed, increasingly become a gift. Even for those who think this is an ominous sign—like the novelist Jonathan Lethem, who speculated that people with Asperger’s are “canaries [who] sensed before anyone else28 that we’d entered a coal mine”—the fit between disease and society is striking, the temptation to claim the label obvious.
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
Albert Einstein, Asperger Syndrome, crowdsourcing, en.wikipedia.org, epigenetics, experimental subject, Golden Gate Park, Haight Ashbury, hypertext link, IBM and the Holocaust, index card, Isaac Newton, megacity, meta analysis, meta-analysis, Mother of all demos, neurotypical, New Journalism, pattern recognition, placebo effect, scientific mainstream, side project, Silicon Valley, Simon Singh, Skype, slashdot, Stephen Hawking, Steve Jobs, Steve Wozniak, Steven Levy, Stewart Brand, the scientific method, union organizing, Whole Earth Catalog, women in the workforce, Yom Kippur War
Like any nascent subculture, this emerging community gave birth to its own in-group slang. The most enduring ANI neologism was the term neurotypical, used as a label for nonautistic people for the first time in the group’s newsletter. With its distinctly clinical air, the term (sometimes shortened to NT) turned the diagnostic gaze back on the psychiatric establishment and registered the fact that people on the spectrum were fully capable of irony and sarcasm at a time when it was widely assumed that they didn’t “get” humor. Carrying the meme to its logical extreme, an autistic woman named Laura Tisoncik launched an official-looking website in 1998 credited to the Institute for the Study of the Neurologically Typical. “Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity,” the site’s FAQ declared.
“autistic space”: “Autism Network International: The Development of a Community and Its Culture,” Jim Sinclair. 2005. http://www.autreat.com/History_of_ANI.html Its founder, Ray Kopp, was the father of a legally blind girl named Shawna: “My Affiliation with Autism,” Ray Kopp. http://www.syr.edu/~rjkopp/data/history.html, accessed through archive.org Kopp launched the list in 1992: Autism List FAQ. Archived at http://kildall.apana.org.au/autism/autismlistfaq.html neurotypical: “Neural connections in Toronto,” Steve Cousins. Our Voice, Vol. 1, No. 3, 1993. “Neurotypical syndrome is a neurobiological disorder”: Institute for the Study of the Neurologically Typical. Muskie, 1998. http://isnt.autistics.org/ “Saying ‘person with autism’ suggests that autism is something bad”: “Why I Dislike Person-First Language,” Jim Sinclair. Autism Network International, 1999. “Autistic people seem to have an affinity with computers”: Carolyn Baird, interviewed by Wouter Schenk, Jan. 8, 1998. https://web.archive.org/web/19990128120401/http://web.syr.edu/~rjkopp/data/casinter.html At a conference in St.
If Leo jumped up and hopped up and down for a minute because he got excited, that was okay. Shore acted like there was all the time in the world. The little tasks he gave Leo quickly became self-rewarding, because they played to a classic autistic strength: pattern recognition. Together, they turned the eighty-eight keys on the keyboard into a map that Leo could then explore by playing the notes. Shannon had never seen anyone “get” Leo so quickly. (Shore confesses that he finds neurotypical kids harder to teach, because he doesn’t understand how their minds work.) By the end of the hourlong lesson, Leo could play a simple, pleasing sequence of notes—and he had also learned that he could be good at doing something he had never tried before. One of the most important lessons that Shannon and Craig have learned on their journey with Leo is patience. Instead of comparing his arc of development to an idealized set of milestones, they have come to accept that he is unfolding at his own pace.
Switched On: My Journey From Asperger's to Emotional Awakening by John Elder Robison
One idea that I’ve come back to throughout this book is the notion that my brain (or anyone else’s) might differ from the brain of a typical person. But the truth is, there is really no such thing as a “typical” brain, because every human is atypical in some or many ways. The “neurotypical person” is a construct, established by scientists who need parameters by which to measure the disparate statistics of different individuals. Last year, Dr. Just tried a new kind of experiment with interesting implications for what “neurotypical” and “different” mean. Marcel put thirty-four young adults in his fMRI scanner and asked them to imagine the following verbs: compliment, insult, adore, hate, hug, kick, encourage, and humiliate. Then he asked them to consider the verbs from the perspective of applying them to another person, as well as to themselves.
When I talk to doctors or psychologists about TMS, I’m always asked about findings. It’s great to hear your story, they tell me, but what did the peer-reviewed journal accounts say? In July 2011, Shirley, Lindsay, Alvaro, and others involved in the research published the results of the first TMS study in the European Journal of Neuroscience, under the heavy title “Brain Stimulation over Broca’s Area Differentially Modulates Naming Skills in Neurotypical Adults and Individuals with Asperger’s Syndrome.” The three-year lag between our participation in the TMS lab and publication of the results is typical in medical research. Reading their paper feels funny, because it’s a very dry account of what was a very emotional and transformative time for me, and I’m sure for the other subjects. Our experiences in the hours and weeks after TMS are not mentioned at all; the published findings are limited to the results of the before and after testing in the lab, and an analysis of what they may mean.
Asperger Syndrome and Alcohol: Drinking to Cope? by Matthew Tinsley, Sarah Hendrickx
• There are also high levels of co-morbidity between anxiety and admittance to alcohol rehabilitation units, with around 65 per cent of those admitted demonstrating both conditions (Mental Health Foundation 2006). 34 / ASPERGER SYNDROME AND ALCOHOL In a number of small steps, we have moved from Asperger Syndrome via social anxiety to alcoholism. It is very likely that Matt is not the only person with AS who has used alcohol as a coping strategy for tolerating the neuro-typical world. The final word is from a young woman with Asperger Syndrome: Q: Is there a link between anxiety and drinking alcohol for you? A: Yes, because when I am drunk I don’t care as much whether people secretly don’t want to talk to me. Normally I am constantly aware of the possibility that I am not acting appropriately, and I stress out about it. Being drunk enables me to be someone else, superficially closer to the way that other people are.
They drink for a very sound reason: it’s the only way they know to exist in the world. Removing this protective layer against the confusions and expectations of a social world may unearth high levels of anxiety and depression. The management of anxiety must go hand in hand with the withdrawal of alcohol. It is important that support workers have a good knowledge of AS, as the perspective of the AS alcoholic may be somewhat different to a neuro-typical alcoholic. Underneath the alcoholism there will always be a person with autism who has to learn to cope with the world without the crutch of alcohol. The desire to return to alcohol as a medication against that anxiety will be particularly strong for this person. There may also need to be a programme in social skills to enable the person to feel more confident about social situations and reduce the need for the substance.
Albert Einstein, Asperger Syndrome, Cass Sunstein, cognitive bias, David Brooks, en.wikipedia.org, endowment effect, Flynn Effect, framing effect, Google Earth, impulse control, informal economy, Isaac Newton, loss aversion, Marshall McLuhan, Naomi Klein, neurotypical, new economy, Nicholas Carr, pattern recognition, phenotype, placebo effect, Richard Thaler, Silicon Valley, the medium is the message, The Wealth of Nations by Adam Smith, theory of mind
The more we study the human mind, the more we can see the beauty and the uniqueness of the individual. General labels, such as “autistic,” can be useful. But we need to remain aware of how much labels are imperfect substitutes for more detailed forms of knowledge about particular individuals. They are placeholders for a deeper understanding that is yet to come. And that’s not just for the autistics. Most so-called neurotypicals aren’t typical at all and if we think they are it’s because we don’t yet appreciate their uniqueness in a sufficiently informed manner. The deeper our understanding of human neurodiversity, and the deeper our appreciation for the individual, the more we can appreciate how many different ways the human mind can contemplate the beauty and wonder of creation. That sounds a bit corny but yes, it is part of the happy ending of this book.
The greater focus of autistics does require qualification. Often the autistic can be less focused if they are distracted and in some regards they are more easily distracted than non-autistics; remember the discussion of the startle reaction? For a discussion of this issue, see Dermot Bowler, Autism Spectrum Disorders: Psychological Theory and Research (cited above), 115–17. In any case, one can think of neurotypicals as trying, through education, to attain the non-distracted maximum focus found in many autistics. For the Department of Education figure, see www.ed.gov/about/overview/budget/budget03/summary/app1/edlite-index.html. CHAPTER 6: THE NEW ECONOMY OF STORIES You’ll find Schelling’s essay in his Choice and Consequence: Perspectives of an Errant Economist (Cambridge, MA: Harvard University Press, 1984).
23andMe, affirmative action, Albert Einstein, artificial general intelligence, Asperger Syndrome, barriers to entry, brain emulation, cloud computing, cognitive bias, correlation does not imply causation, crowdsourcing, Daniel Kahneman / Amos Tversky, David Brooks, David Ricardo: comparative advantage, Deng Xiaoping, en.wikipedia.org, feminist movement, Flynn Effect, friendly AI, hive mind, impulse control, indoor plumbing, invention of agriculture, Isaac Newton, John von Neumann, knowledge worker, Long Term Capital Management, low skilled workers, Netflix Prize, neurotypical, pattern recognition, Peter Thiel, phenotype, placebo effect, prisoner's dilemma, profit maximization, Ray Kurzweil, recommendation engine, reversible computing, Richard Feynman, Richard Feynman, Rodney Brooks, Silicon Valley, Singularitarianism, Skype, statistical model, Stephen Hawking, Steve Jobs, supervolcano, technological singularity, The Coming Technological Singularity, the scientific method, Thomas Malthus, transaction costs, Turing test, Vernor Vinge, Von Neumann architecture
I’ve done extensive research on autism, and when I went to my first Singularity conference, I was struck by how many people there seemed to be somewhere on the autism spectrum. Others in the Singularity community agree that it attracts autistics. If the Singularity is a realistic and dangerous possibility, and if autistics have some special gift for understanding it, then embryo selection against autism would lower humanity’s survival prospects. Autistics often consider themselves “born on the wrong planet” because neurotypical (“normal”) humans are so different from them.213 If, therefore, embryo selection reduced the number of autistics, parents would have even greater reason to fear having an autistic child, causing them to even more strongly select against autism-prone embryos. Governments could correct a bias against autistic children by paying parents to have them. Although it seems unlikely that the United States would do this, I can easily imagine that Singapore would.
Although it seems unlikely that the United States would do this, I can easily imagine that Singapore would. Lee Kuan Yew, the former prime minister of Singapore, described his daughter’s child, diagnosed with Asperger syndrome, as being “intellectually normal . . . good-natured and the best-behaved and most likeable of my grandchildren.”214 Technology might soon reduce the social costs of autism. Much human-to-human communication takes place on an unconscious, nonverbal level. Most neurotypicals send nonverbal signals and automatically incorporate the signals they receive into their behavior. These signals are analogous to your sense of balance, which keeps you from falling over without your conscious mind having to do much work. High-functioning autistics’ blindness to this kind of communication makes it challenging for them to fit in socially. But I foresee wearable computers that decrypt nonverbal signals by analyzing body language, facial expressions, and word tone.
Atul Gawande, Bernie Madoff, call centre, cognitive dissonance, David Brooks, delayed gratification, Edward Glaeser, epigenetics, Erik Brynjolfsson, estate planning, facts on the ground, game design, happiness index / gross national happiness, indoor plumbing, invisible hand, Mark Zuckerberg, medical residency, Menlo Park, meta analysis, meta-analysis, neurotypical, Occupy movement, place-making, Ponzi scheme, Ralph Waldo Emerson, randomized controlled trial, Ray Oldenburg, Silicon Valley, Skype, Steven Pinker, The Great Good Place, The Wisdom of Crowds, theory of mind, Tony Hsieh, urban planning, Yogi Berra
There may be other therapeutic applications to such basic research, including promoting mobility in amputees or those with spinal cord injuries. 14. Marco Iacoboni, Mirroring People: The Science of Empathy and How We Connect with Others (New York: Picador, 2008). 15. Ibid. 16. In The Age of Empathy, Frans de Waal points out that, remarkably, children on the autistic spectrum are immune to the yawns of others, which is just one sign that they don’t perceive social signals the same way as “neurotypicals.” De Waal, Age of Empathy. 17. Iacoboni, Mirroring People; Seymour M. Berger and Suzanne W. Hadley, “Some Effects of a Model’s Performance on an Observer’s Electromyographic Activity,” American Journal of Psychology 88, no. 2 (1975). 18. Jared Curhan and Alex Pentland, “Thin Slices of Negotiation: Predicting Outcomes from Conversational Dynamics Within the First Five Minutes,” Journal of Applied Psychology 92, no. 3 (2007); Alex Pentland, Honest Signals: How They Shape Our World (Cambridge, Mass.: MIT Press, 2008). 19.
Albert Einstein, AltaVista, British Empire, Cass Sunstein, cognitive dissonance, correlation does not imply causation, Daniel Kahneman / Amos Tversky, en.wikipedia.org, illegal immigration, index card, Isaac Newton, loss aversion, meta analysis, meta-analysis, mouse model, neurotypical, pattern recognition, placebo effect, Richard Thaler, Saturday Night Live, Solar eclipse in 1919, Stephen Hawking, Steven Pinker, the scientific method, Thomas Kuhn: the structure of scientific revolutions
This is a common scenario even for parents with children on the milder end of the autism spectrum. “It makes people uncomfortable,” says Jane Johnson, who is the managing director of the Autism Research Institute and is a member of the family whose ancestors founded the multinational pharmaceutical and medical devices company Johnson & Johnson. “Particularly for women, many of our friends are based around child rearing. . . . If you’re sitting there with your neurotypical child and your friend Suzy is there with her autistic child, you’re going to feel really uncomfortable when your child is running up and saying, ‘Mommy, mommy, I just went down the slide’—and Suzy’s child can’t speak. You’re going to cringe if you’re a sensitive person with every word that comes out of your child’s mouth, knowing how Suzy doesn’t get those same experiences. I suppose they don’t know what to say.”