Part 1 of email from faas (families of adults affected by aspergers)
We suggest to everyone who contacts us to read Asperger's Syndrome: A Guide for Parents and Professionals, authored by Prof. Tony Attwood, Ph.D. Dr. Attwood's book will give you a clear understanding of Asperger's Syndrome in children in easy to understand wording and terms. Tony Attwood's latest books: The Complete Guide to Asperger's Syndrome, and Asperger's and Girls are informative as well.
Asperger's Syndrome (AS) has only been recognized in the USA since 1994. Because of this fact millions of families have fallen through the cracks of the medical, educational, judicial systems and the religious communities in the USA, and around the world. The USA at this time, is approximately five to seven years behind some other countries in its' understanding and knowledge of autism/AS.
A report that had been researched for three years in the UK was made public in 2002. The title: Taking Responsibility...Good practice guidelines for services - ADULTS with Asperger syndrome. This report is well worth taking the time to read. A summary of this marvelous report is also posted at the FAAAS website which you may print out.
AS is a neurological-biological-developmental disorder on the autistic spectrum. There is no cure. Both males and females are affected, however each gender may present differently. AS is usually an inherited disorder.
The earlier in life the correct diagnosis, the better the outcome because with special training and education and in certain circumstances medications, children now and in the future will have a much better chance than people in the past who grew into adulthood confused, misunderstood and without any support or assistance. Asperger's Syndrome can be a profound disability. Asperger's Syndrome is one of the 'invisible' disabilities..those who have AS 'look' fine...but they can be as disabled as someone with obvious physical disabilities.
FAAAS Inc's mission and goals concern the needs of the spouses and/or parents of ADULTS who have AS. Education, along with support and validation, is our focus.
At the FAAAS website: www.faaas.org you will find information about the first book written and published by spouses and parents of AS adults, entitled The Book of FAAAS. This book was re-published with an expanded format in 2003 by Jessica Kingsley Publishers, UK. The new title: Asperger's Syndrome and Adults: Is anyone Listening? Essays and Poems by Partners, Parents and Family Members of Adults with Asperger's Syndrome. You may order this book through the FAAAS website, simply click on the book link, then the amazon.com?tag=mumsnet&ascsubtag=mnforum-21 link, or order from the publisher: http:www.jkp.com or order from your local bookstore.
A book which was self-published by the author, Judith Newton, No Team Player...a neurotypical's life married to a man with Autism Spectrum Disorder, is available by contacting [email protected]
A book published by the National Autistic Society in London, UK entitled, The Other Half of Asperger Syndrome, written by Maxine Aston, also Asperger's in Love, published by JKP.
The ADHD Autism Connection..a step toward more accurate diagnoses and effective treatment, by Diane M. Kennedy, published by WaterBrook Press is also good. This book may answer some of the questions families have regarding diagnoses.
Asperger Syndrome and Long-Term Relationships, by Ashley Stanford, published by JKP is very good. It is being suggested that reading this book AND the AS and Adults...Is Anyone Listening? for a FULL compliment of AS issues, and how this disorder affects relationships WITHIN the NT/AS family.
Other books we recommend: Solutions for Adults with Asperger's Syndrome...maximizing the benefits, minimizing the drawbacks to achieve success by Juanita Lovett, Ph.D., published by Fair Winds Press; Asperger's Syndrome and Sexuality...from adolescence through adulthood by Isabelle Henault, Ph.D.: Understanding the Nature of Autism and Asperger's Disorder by Edward R. Ritvo, MD., Counselling for Asperger Couples by Barrie Thompson, the last three books are published by Jessica Kingsley Publishers, UK.
FAAAS Inc. presented our fourth international conference, October 8-9, 2005. The featured speakers for all of our conferences, Tony Attwood, Ph.D., Maxine Aston, and Isabelle Henault, Ph.D. The title of the FAAAS 2005 October conference, "Asperger's Syndrome, Relationships and Cassandra" The topics: Asperger's in love, sexuality in AS teenagers and adults; and Cassandra Affective Disorder aka Cassandra Phenomenon...the effects of undiagnosed and unrecognized AS behaviors upon family members who are not on the spectrum. The attendees were very pleased and impressed with the subject matter, and they were enthusiastic about the latest information regarding Asperger's Syndrome in adults from around the world, and also learning the information regarding Cassandra. Cassandra Phenomenon is now also known as OTRS/CP...Ongoing Traumatic Relationship Syndrome/Cassandra Phenomenon...a variant of PTSD.
FAAAS offered a workshop Nov. 6, 2010, co-sponsored with the NASW (National Assoc. of Social Workers) entitled: FAMILY MATTERS: Insight into Relationships and Asperger's. The format of this workshop was replicated in Australia, March 9, 2011.
If you have questions or you would like further information regarding AS in adults, or info regarding NT/AS relations, please reply to this email: faaas@faaas. part 2
FAAAS Is a non-profit 501(c)(3) organization. We have posted PayPal at our website: www.faaas.org for your convenience in assisting us in our efforts, and/or if possible, a mailed donation to the address listed above.
As you read in the above form letter, which is sent to everyone who contacts FAAAS from around the world, there is little info or support or assistance regarding AS in adults, or their families. It would be beneficial to read all of the articles and links posted to our website for a better understanding of this disorder in adults ...and how this disorder affects everyone in the family unit. Our info is geared towards adults with AS, or more precisely how the behaviors of undiagnosed AS in an adult affects others. Educating yourself with the correct information about AS behaviors is the first step in understanding Asperger's Syndrome.
My husband was diagnosed at a teaching hospital in Boston with AS and Tourette's Syndrome at age 69. Because there was no information in the USA in 1996 regarding AS and adults, and after we discovered information and support from the UK, we began FAAAS. We hope you will offer the FAAAS website: www.faaas.org to other families who may be living with this disorder, also to medical professionals and educators.
Most adults with AS are opposed to getting any help for their disorder, as they do not think there is anything wrong with them...this is part of the 'syndrome' of Asperger's Syndrome. The diagnosis for AS is NOT difficult. A knowledgeable clinician could recognize this disorder in children and adults usually within an hour or less, as long as they also LISTEN to the spouse or parent carefully, and if they include an EQ (Emotional Quotient) test. Unfortunately, there are few clinicians in the USA who recognize this disorder in the adult population. There is much more to be learned about this disorder by the medical communities. The correct AS education and information regarding this disorder is key to finding appropriate support and assistance.
There was little research available re females and AS, however work in this area of autism/AS has recently begun in earnest including mood disorders, eating disorders, etc. Substance abuse is quite common in teenagers and adults who are undiagnosed or incorrectly diagnosed. Most people with AS do not have a mental illness...although if not diagnosed correctly, they can suffer with depression, anxieties, anger, etc. AS females can be highly manipulative within families...as they usually have more social awareness than males. People with AS can be quite gullible, and are easily lead into 'bad' situations by acquaintances/'friends.' Adults with AS usually resist any change in their lives, and as you read above, the majority of AS individuals do not recognize the disorder in themselves...this is the major drawback for them getting support/assistance.
The education of AS using the correct information is KEY to understanding this disorder. We suggest to AS individuals and to their families to contact their local autism society, and/or a local teaching hospital, ask if they have evaluation services and support for AS adults...and their families. (The same applies to children who may be along the autistic spectrum...EARLY intervention is imperative.) AS individuals need support from a knowledgeable counselor for re-training of AS behaviors, if they are agreeable...and the NT partners/parents/siblings need a 'safe place' where they can discuss issues/problems of AS behaviors within the family unit, to discuss how other family members are affected by AS behaviors. Millions of families are realizing that their 'different' family member may be along the spectrum. We hope this information proves to be helpful. You are not alone, not anymore!
part 3
PS: A good book explaining AS to children: Can I tell you about Asperger Syndrome? A guide for friends and family, Jude Welton, JKP: //www.jkp.com
PPS: Jane, please send more information how AS has impacted your life. Email anytime...usually here. k
There are two ways of spreading light, to be the candle or the mirror that reflects it.
Elizabeth Wharton
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SOCIAL INTELLIGENCE <br />
The New Science of HUMAN RELATIONSHIPS, by DANIEL GOLEMAN <br />
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Excerpt from Chapter 9...Mindblind...pages 133-135 <br />
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For Richard Borcherds, having friends over for a visit is just too confusing. As people get to chattering away, he has trouble following the back-and-forth, the interplay of glances and smiles, the subtleties of innuendo and double entendre, the sea of words--all moving at too high velocity.<br />
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He is oblivious to the bluffs and deft feints of the social world. Later, if someone takes the time to explain to him the punch line of a joke, or why one guest stalked out in a huff or another blushed with embarrassment, it can make sense to him. But in the moment all this social haze goes over his head. So when guests come over, he often just reads a book or withdraws to his study.<br />
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Yet Borcherds is a genius, winner of the Fields Medal, the equivalent in mathematics of the Nobel Prize. His fellow mathematicians at Cambridge University hold him in awe, and most of them barely understand the specifics of his theories, so rarified is his field. Despite his social inabilities, Borcherds has found success.<br />
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When Borcherds commented in a newspaper interview that he suspected he might have Asperger's syndrome<span class="line-through">the subclinical version of autism</span>Simon Baron-Cohen, head of the Autism Research Centre right here at Cambridge, contacted him. Baron-Cohen then described in great detail the hallmarks of the syndrome to Borcherds, whose matter-of-fact response was: "That's me." The math prodigy has offered himself up as Exhibit A in research on Asperger's.<br />
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For Borcherds, communication is purely functional: find out what you need from someone and forget the small talk, let alone telling them what you're feeling or finding out how they're doing. Borcherds shuns the telephone--though he can explain the physics of how it works, the social bit confuses him. He restricts his e-mail to the bare basics of work-related information. When he goes from place to place, he runs, even when someone else has been walking along with him. Though he realizes other people sometimes think him rude, he sees nothing odd in his social habits.<br />
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All of this, for Baron-Cohen, bespeaks a classic case of Asperger's, and when Borcherds took standard tests for the syndrome, he fit the profile well. The medal-winning whiz had a low score on being able to read people's feelings from their eyes, on empathy, and on intimacy in friendships. But, he scored on the very highest tiers on his understanding of physical causality and on being able to systematize complex information.<br />
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That picture<span class="line-through">low on empathy, high on systemizing</span>is the underlying neural pattern in Asperger's, according to years of research by Baron-Cohen and many others. Despite his mathematical brilliance, Borcherds lack empathetic accuracy; he cannot sense what's going on in someone else's mind.<br />
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A cartoon shows a young boy and his father in a living room; a scary-looking creature from outer space crawls down the stairs out of sight of the father but visible to the son. In the caption, the father says, "I give up, Robert. What has two horns, one eye, and creeps?"<br />
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To get the joke we must be able to infer things that are unsaid. For one, we need to be familiar with the English language structure of a riddle, so we can deduce that the boy has asked his father, "What has two horns, one eye, and creeps?"<br />
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More to the point, we need to be able to read two minds, the boy's and the father's, to understand what the boy knows and contrast that with what the father does not yet realize, and so anticipate the shock with what the father does not yet realize, and so anticipate the shock he will soon feel. Freud proposed that all jokes juxtapose two different frames on reality; here, one frame is the alien on the stairs, and the other is the father's assumption his son is merely asking a riddle.<br />
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This ability to apprehend what seems to be going through someone else's mind is one of our most invaluable human skills. Neuroscientists call it "mindsight."<br />
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Mindsight amounts to peering into the mind of a person to sense their feelings and deduce their thoughts<span class="line-through">the fundamental ability of empathic accuracy. While we can't actually read another person's mind, we do pick up enough clues from their face, voice, and eyes</span>reading between the lines of what they say and do--to make remarkably accurate inferences.<br />
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If we lack this simple sense, we are at a loss in loving, caring, cooperating<span class="line-through">not to mention competing or negotiating</span>and awkward in even the least taxing social encounter. Without mindsight our relationships would be hollow; we would relate to other people as though they were objects, without feelings, or thoughts of their own--the predicament of people with Asperger's syndrome or autism. We would be "mindblind."<br />
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Mindsight develops steadily over the first several years of a child's life. Each landmark in the development of empathy moves a child closer to the understanding how other people are feeling or thinking or what their intentions might be. Mindsight dawns in stages as a child matures, starting with the simplest self-recognition and developing into sophisticated social awareness ("I know that you know that she likes him".....".<br />
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part 4<br />
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Counselling for Asperger Couples, Barrie Thompson, Jessica Kingsley Publishers, UK, 2008. <br />
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Pages 54-55.<br />
Stage Four: Acknowledging Different Perspectives<br />
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"Cassandra phenomenon<br />
I want to conclude this chapter by giving some recognition to a debilitating condition that can be experienced by the spouses of people with AS (often at the hands of family members, friends and colleagues), that is referred to as the Cassandra phenomenon. I think the following quote from the Families of Adults Affected by Asperger Syndrome (FAAAS) website (www.faaas.org/doc.php?40) aptly explains the naming of this syndrome.<br />
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I ended up feeling that no one would listen to me and came up with a name for the 'syndrome' that affects the non-AS spouse: The CASSANDRA PHENOMENON, Cassandra being the Greek mythological character who was given the gift of prophecy, but also the curse of having no one believe her even though she was right! (Anonymous, Massachusetts, 1999).<br />
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It is usually both a blessing and a relief when an NT spouse learns about AS (perhaps from a magazine article or a TV programme) and feels she now has an explanation for her husband's unusual behaviours. But it is demoralizing and extremely frustrating if the AS husband rejects her theory out of hand. Imagine then, as a next step the NT spouse seeks support from the extended family; 'Perhaps mum-in-law might be able to give me some childhood history of my husband?' She optomistically thinks this might help, only to be told quite firmly, 'There's nothing wrong with my son, I suggest you look a bit closer to home!' Not only have the NT spouse's hopes been dashed with regard to gaining support from her mother-in-law, but the relationship between herself and all of her in-laws has probably now been seriously damaged and even more tension may be generated at home between her and her husband.<br />
Still intent on gaining credibility for the theory that her husband exhibits Asperger-type behaviour, she then seeks the support of people in her and her husband's social network. The problem here might be that the AS husband (assuming the wife's theory is indeed correct), is one of those 'chameleon-like' people that can fit in reasonably well in certain situations. A typical type of response in these circumstances from the NT spouse's friend might then be, 'I think he's a little different to other men, but I think that's kind of cute. I don't think he's as bad as you are making out.' Ironically, it may have been the 'cute difference' that initially attracted the NT partner to her AS spouse when they first met!<br />
No way forward here, then for our NT partner as people outside the relationship only see a limited part of the AS man. They don't experience him in an emotional context, they don't witness his rituals, his routines or his inflexible lifestyle that occur for the most part within the confines of the home. FAAAS gave further credence to this problem in 1997 when they described it thus:<br />
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FAAAS came up with the term "Mirror Syndrome" to explain the way NT spouses and the NT family members adversely affected by AS behaviors, over time, begin to reflect the persona of AS behaviours we live with, twenty-four seven. We are isolated, no one validates us, we lose friends and family, and we feel like 'hostages' in our own homes. (FAAAS website)<br />
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My reasons for drawing attention to this condition, be it named Cassandra phenomenon or Mirror Syndrome, is to let NT partners who are in this plight know that their situation is recognised. It is known that loneliness, anxiety and depression can result when they try to tell people about their AS situation, but they are not listened to to or are thought of as being melodramatic or even paranoid. I also hope that family members, friends and colleagues may in future take notice and be more prepared to hear what 'Cassandra' has to say."<br />
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Page 136: "...One might think that because of my own AS traits I would already have known all about that world, but why should I? Does an NT person know all there is to know about their world? I think not. I was only previously aware of my own personal perspective."<br />
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Doctors are 'failing to spot Asperger's in girls'<br />
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It is a condition on the autistic spectrum that has long been known to affect boys, who may have obsessive interests or struggle to make friends. Now an expert says many more girls have it than was thought, and failure to diagnose them can lead to misery and self-harm. Amelia Hill reports<br />
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? The Observer, Saturday 11 April 2009 <br />
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Doctors are failing to diagnose thousands of girls who have Asperger's syndrome, according to one of the world's leading experts. Dr Judith Gould has accused the medical world of missing and overlooking girls with the condition, condemning them to lives of such misery that many resort to extreme self-harm and anorexia.<br />
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Gould and her colleague, Lorna Wing, carried out ground-breaking research into the link between Asperger's syndrome, autism and other pervasive developmental disorders in 1979. Exploiting that insight, they pioneered the concept of the autism spectrum. Now Gould, a chartered consultant clinical psychologist with more than 35 years' experience in autism spectrum disorders, has called on the government for a packet of measures to help girls with Asperger's.<br />
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Gould, who is director of the National Autistic Society's Lorna Wing centre for autism and co-founder of the Centre for Social and Communication Disorders, said: "We're failing girls at the moment. We are doing many thousands of them a great disservice. They are either not being picked up in the first place, but if they ask for help they are being turned away. Even if they are referred for diagnosis, they are commonly rejected."<br />
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The government is about to launch a consultation on a new national strategy on autism. Gould and the National Autistic Society want the final strategy - due at the end of the year - explicitly to address the misconceptions about gender that can make accessing help, support and services particularly difficult for girls and women. <br />
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"Women tell us that these misconceptions can make their particular battles and struggles even more difficult," said Jane Asher, the society's president. "They say that getting a diagnosis in the first place can often feel like an insurmountable hurdle, with many doctors unaware that the condition can affect females."<br />
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More children are being diagnosed with Asperger's today than ever before. A decade ago one in 1,000 children in the UK was thought to have an autism spectrum disorder (ASD). Five years ago that had increased to one in 500. Today the figure stands at one in 100.<br />
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It remains unclear as to whether the increase in diagnoses is caused by a true increase in the disorder, or is the result of increased awareness of autism and its broad characteristics.<br />
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Even less well understood, said Gould, is the difference in prevalence rates between boys and girls. The statistic most commonly reported is that ASDs are four times more common in males than in females. Many clinicians, however, believe that the ratio is as high as 16 boys to every girl. But Gould believes that significantly more girls have the condition than is recognised; she estimates the ratio to be 2.5 boys to every girl. <br />
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"Girls are not being picked up because there is still a stereotyped view of what Asperger's is, which is based entirely on how boys present with the condition," she said. "Professionals are not up to speed in knowing how girls present. We are working with the government to ensure they highlight this concern in their upcoming consultation. We are hoping to convince them to target this much under-investigated but vitally important issue."<br />
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Tony Attwood, founder of the first diagnostic and treatment clinic for children and adults with Asperger's, and author of The Complete Guide to Asperger's Syndrome, agreed with Gould's estimation of a 2.5:1 ratio of boys to girls. "The bottom line is that we understand far too little about girls with ASDs because we diagnose autism based on a male conceptualisation of the condition. We need a complete paradigm shift," he said. <br />
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"We need to draw up a female version of Asperger's that identifies girls on the basis of the way they present, and we need to do this as a matter of urgency: undiagnosed Asperger's can create devastatingly low self-esteem in girls. In my experience, up to 20% of female anorexics have undiagnosed Asperger's."<br />
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Girls slip through the diagnostic net, said Attwood, because they are so good at camouflaging or masking their symptoms. "Boys tend to externalise their problems, while girls learn that, if they're good, their differences will not be noticed," he said. "Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script."<br />
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Girls also escape diagnosis, said Attwood, because they are more social than boys with the condition. Their symptoms can also be missed because it is the intensity of their interests that is unusual, and not the oddity of what they do.<br />
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"The impairments to their social life or interests tend not to stand out in the same way as boys' do," he said. "They might have one friend, while boys with the condition won't have any. Also, boys hyperfocus on facts and certain interests, such as trains or weather. Girls escape into fiction. They have imaginary friends, live in another world with fairies and witches, obsessively watch soap operas or become intensely interested in celebrities."<br />
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Professor David Skuse, head of the behavioural and brain sciences unit at the Institute of Child Health, teaches clinicians to diagnose the condition. "Increasingly fewer girls are diagnosed as their IQ reaches 100, the population average," he said. "Some people maintain this is because girls simply don't have Asperger's, but I would argue that brighter girls, especially those who are more verbal, are able to mask and compensate for their condition. I make sure I emphasise the difference in the ways boys and girls present when I train clinicians, because I am certain that girls are being failed by the system, especially those with higher IQs," he added. "My belief is that, if we can prove the ratio of boys to girls is as high as many of us suspect, it would be as significant a milestone in this field as the discovery that the condition is on a spectrum."<br />
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<a class="break-all" href="http://www.guardian.co.uk/lifeandstyle/2009/apr/12/autism-aspergers-girl" rel="nofollow noindex" target="_blank">www.guardian.co.uk/lifeandstyle/2009/apr/12/autism-aspergers-girl</a><br />
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For the first time, a Census of Autistic Adults<br />
<a class="break-all" href="http://www.time.com/time/health/article/0,8599,1927415,00.html#ixzz1gZBa4jIk" rel="nofollow noindex" target="_blank">www.time.com/time/health/article/0,8599,1927415,00.html#ixzz1gZBa4jIk</a><br />
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Triad of Autism<br />
<a class="break-all" href="http://www.awares.org/static_docs/about_autism.asp?docSection=3" rel="nofollow noindex" target="_blank">www.awares.org/static_docs/about_autism.asp?docSection=3</a><br />
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Brain scans in infants shed light on autism<br />
<a class="break-all" href="http://thechart.blogs.cnn.com/2012/02/17/brain-scans-in-infants-shed-light-on-autism-onset/" rel="nofollow noindex" target="_blank">thechart.blogs.cnn.com/2012/02/17/brain-scans-in-infants-shed-light-on-autism-onset/</a><br />
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Temple Grandin on "60 Minutes" July 10, 2012: <a class="break-all" href="http://www.cbsnews.com/8301-504803_162-20123944-10391709/temple-grandin-understanding-autism/?tag=contentMain;contentAux" rel="nofollow noindex" target="_blank">www.cbsnews.com/8301-504803_162-20123944-10391709/temple-grandin-understanding-autism/?tag=contentMain;contentAux</a>