Autism spectrum disorders
Stories of individuals with autism
Parents' and siblings' stories
Autism and vaccines
Stories of individuals with autism
Parents' and siblings' stories
Autism and vaccines
• Autism Study (People Powered Medicine) Whether you want to join the study or not, school down for links to interesting material, including "Can We Measure Autism?"
• Estee Klar on autism (was The Joy of Autism)
• Don't Mourn for Us by Jim Sinclair, based on a 1993 presentation). "Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."
• In a Different Key: The Story of Autism by John Donvan and Caren Zucker ("a riveting tale about how a seemingly rare childhood disorder became a salient fixture in our cultural landscape. It features vivid portraits of people with autism and their devoted parents and recounts dramatic controversies among well-intentioned and occasionally misguided advocates and doctors who have tried to help those with the condition. These gripping personal stories give the book tremendous narrative drive.”--Wall Street Journal). See also Ann Bauer's review (Wash Post, Kansas City Star, 1-31-16): "This is a story of violence, avarice, politics and valor. From mid-century institutions where children deemed feeble-minded were committed to live in dark corners covered with their own excrement to the millennial vaccine mania that corrupted autism research and set health policy back years, Donvan and Zucker paint the story in sweeping, cinematic bursts.... this book does what no other on autism has done: capture all the slippery, bewildering and deceptive aspects. Finally, so much that had happened to my family made sense: The six different diagnoses my son received as a child, not because he was changing but because the diagnostic criteria were."
• Girls and autism: It can be subtle, or absent for some at risk ( Lindsey Tanner, Associated Press, 10-25-16) Many girls with autism have social skills that can mask the condition. And some girls are born without autism despite the same genetic mutations seen in boys with the condition. The gender effect is a hot topic in autism research and one that could lead to new ways of diagnosing and treating a condition that affects at least 1 in 68 US children. “Autism may not be the same thing in boys and girls,” said Kevin Pelphrey, an autism researcher at George Washington University. Brain imaging suggests there may be an additional explanation for why many girls with autism have more subtle symptoms, Pelphrey said. Recent studies have found another difference: Girls can have the same kinds of genetic mutations seen in boys with autism, “and even need to have twice as many mutations on average to actually manifest with autism,” said Joseph Buxbaum, director of an autism center at Mount Sinai medical school in New York City. As for diagnosis: "There’s no autism blood test. It’s diagnosed by observing behavior and some experts say gender-based differences highlight a need to develop different ways to evaluate boys and girls."
• Autism's First Child (John Donvan and Caren Zucker, GThe Atlantic, Oct. 2010) Donald Triplett was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers. A long, thoughtful piece. See also Meeting 'Autism's First Child' (Caren Zucker, PBS Newshour Series, Autism Now, 4-15-11) A profile of Donald Triplett, the 77-year-old Mississippian whose diagnosis of autism was the first to appear in the medical literature — in 1943.
• NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman (foreword by Oliver Sachs). See A Q&A about autism with Steve Silberman (Michael McWatters, TEDEd Lessons Worth Sharing, 8-11-16). What teachers need to know about autism and neurodiversity. “If you understand that the autistic students in your class are just as complex and nuanced and intensely emotional and hopeful as you are,” says Silberman, “you’ll do everything in your power to help them lead happier and more engaged lives.” The history of autism makes clear that the notion that there is one best way to learn, one best way to experience the world, and one best way to be human, is bunk. Think about it: why would the community of human minds be less diverse than, say, a rainforest? Inclusion sends a crucial message to all students: If you’re born disabled or become disabled in your lifetime, society will build a place for you. One of my suggestions for improving education is very basic: pay teachers more. Pay them like the professionals they are — highly valued professionals with the crucial job of putting kids on the pathway to success and a fulfilling life. See also his TED talk: The forgotten history of autism (filmed March 2015, available in 31 subtitle languages and an interactive transcript)
• Researchers might have located the brain switch responsible for autism's social struggles (Mike Macrae, Science Alert, 3-16-17) This is where some aspects of autism start.
• Summary of Advances in Autism Spectrum Disorder Research: Calendar Year 2015 (PDF, Interagency Autism Coordinating Committee)
• The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida
• Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant with Tom Fields-Meyer
• The Autistic Brain: Helping Different Kinds of Minds Succeed by Temple Grandin, author of Thinking in Pictures: My Life with Autism (the book with which Temple Grandin first brought autism to public awareness). Listen to her TED Talks: The World Needs All Kinds of Minds (video, TED2010). "Temple Grandin, diagnosed with autism as a child, talks about how her mind works -- sharing her ability to "think in pictures," which helps her solve problems that neurotypical brains might miss. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids."
• Learners on the Autism Spectrum: Preparing Highly Qualified Educators and Related Practitioners by Kari Dunn Buron and Pamela Wolfberg
• Loving Lampposts: Living Autistic (DVD and can be viewed on Amazon Prime). Todd Drezner's highly rated documentary about autism, how society views the diagnosis, and how that affects the way autistic people are treated (personally and medically). He examines two movements--the "recovery movement," which views autism as an epidemic brought on by environmental toxins, and the "neurodiversity movement," which argues for accepting autism and supporting autistic people).
• Patient Voices: Autism (NY Times Health Guide) The autism-spectrum disorders encompass a wide range of symptoms, from social awkwardness to a complete inability to interact and communicate. Here, six men and women speak about living with an autism-spectrum disorder. Join the discussion.
• Don't Mourn for Us (Jim Sinclair, Autism International newsletter,1993). As quoted in Ruth Padawer's article, "Autism, Sinclair wrote, “colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.’ . . . This is what we hear when you pray for a cure.”
• NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman (foreword by Oliver Sachs). “In this genuine page-turner, Steve Silberman reveals the untold history of autism: from persecution to parent-blaming, from Rain Man to vaccines, of doctors for whom professional ego trumped compassion, to forgotten heroes like Hans Asperger, unfairly tainted by Nazi links. It ends on an optimistic note, with ‘autistics’ reclaiming the narrative and defining autism in their terms — more difference than disability and an essential part of the human condition. Highly recommended for anyone with an interest in autism or Asperger’s, or simply a fascination with what makes us tick.” ~Benison O’Reilly, co-author of The Australian Autism Handbook. See Morton Ann Gernsbacher's review here: "Neurotribes" recovers lost history of autism (SFARI, Simons Foundation Autism Research Initiative)''
• Autism misdiagnosis 'ruined a life' (BBC, 6-27-2000). Sean Honeysett has been in and out of psychiatric units and prison his entire adult life. Doctors have now discovered that Sean is not mentally ill, but instead suffers from a poorly understood form of autism known as Asperger's syndrome. Sean demonstrated classic signs of Asperger's from an early age. He was often naughty and his inability to relate to other children led one educational psychologist to label him as "emotionally disturbed". Not until 1981 - when Sean was 16 - did Hans Asperger's paper, written in German, come to the attention of a British psychiatrist who saw Honeysett. "Autistic children often have little desire to interact. Children with Asperger's syndrome do want to mix, but do not have the social skills to do so effectively. A recent study of patients in three high security special hospitals - Broadmoor, Rampton and Ashworth - found that up to 5.3% of the inmates had an autism-like disorder. That is more than three times higher than the incidence in the general population. The other great unknown is how many people in prison may have undiagnosed Asperger's syndrome." See also Autism is underdiagnosed in prisoners (British Medical Journal 2016, BMJ 2016;353:i3028).
• Autism Awareness Is Not Enough: Here’s How to Change the World (Steve Silberman PLoS blog, 4-2-12) One in 88 kids are somewhere on the autism spectrum. Research focuses on genetic and environmental risk factors — not on improving the quality of life for the millions of autistic adults who are already here, struggling to get by.
• The Autism Advantage (Gareth Cook, NY Times, 11-29-12) Looking beyond stereotypes, high and low.
• What Is It About Autism and Trains?! (developmental pediatrician Amanda Bennett, Autism Speaks, 9-12-14)
• People with autism and learning disabilities excel in creative thinking, study shows (Tracy McVeigh, The Guardian, 8-22-15) Research confirms that seeing the world in ‘a different way’ sparks unique ideas
• I Know What Causes Autism (Carrie Cariello). By the author of What Color is Monday?
• Autism Spectrum Disorders: A Parent’s Guide to Symptoms and Diagnosis on the Autism Spectrum. Autism is not a single disorder, but a spectrum of closely-related disorders with a shared core of symptoms. An informative page.
• Kerry Magro on Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) (Autism Speaks) Kerry (diagnosed with PDD-NOS at age 4) produces “Kerry’s Korner,” an ongoing video series on YouTube.
• Reaching My Autistic Son Through Disney (Ron Suskind, NY Times Magazine, 3-7-14). A must-read piece about regressive autism -- and don't skip the comments.
• A Parent’s Guide to Autism Spectrum Disorder (National Institute of Mental Health)
• The Truth About Autism: Scientists Reconsider What They Think They Know (David Wolman, Wired magazine, 2-25-08). "...Mottron and other scientists have 'found universal strengths where others usually look for universal deficits.' Neuro-cognitive science, [Amanda Baggs] says, is finally catching up to what she and many other adults with autism have been saying all along.'
• Remembering Dr. Lorna Wing (this piece by Penumbrage is an interesting piece of history about our very recently changing understandings of autism, and her contributions to a more sophisticated understanding.
• Autism cases in U.S. jump to 1 in 45: Who gets the diagnosis, in 8 simple charts (Ariana Eunjung Cha, WashPost, 11-13-15) "As in previous years, most of the children being diagnosed with autism are male, non-Hispanic white, living in large metropolitan areas, with two parents and with at least one parent with more than a high school education....Many more boys are being diagnosed with autism than girls but the gap is narrowing somewhat....More than two-thirds of children being diagnosed lived with two parents." Etc.
• Early Intervention For Toddlers With Autism Highly Effective, Study Finds (Autism Speaks, 11-9-09) Significant gains seen in IQ, communication and social interaction
• Autism Advisor (Scott Center for Autism Treatment) Caregiver training to prevent and address problem behaviors at home. Check out Resources and Tool kits.
• The Struggles of Women Who Mask Their Autism (Francine Russo, The Atlantic, Feb. 2018) By “camouflaging” their condition, many women on the spectrum learn to fit in—and risk psychological harm. 'It’s only after a diagnosis that a woman may ask, “Which parts of myself are an act and which parts of me have been hidden? What do I have that’s valuable inside myself that can’t be expressed because I’m constantly and automatically camouflaging my autistic traits?,” Igelström says. “None of those questions can be processed without first getting diagnosed, or at least [self-identifying], and then replaying the past with this new insight. And for many women, this happens late in life after years of camouflaging in a very uncontrolled, destructive, and subconscious way, with many mental-health problems as a consequence.”'
• The Significance of Semantics: Person-First Language: Why It Matters (Autistic Hoya, August 2011). Various reasons for (and against) using the phrase "person with autism" rather than "autistic person." Identity-first language vs. people-first language.
• A Guide to Understanding the Full Ramifications of Autism Spectrum Disorder (CareersInPsychology.org)
• Nowhere To Go: Young People With Severe Autism Languish In Hospitals (Christina Jewett. Kaiser Health News, 9-26-17) Some teens and young adults are spending weeks or even months in retrofitted emergency rooms — even in mesh-covered tents — until specialized care can be found. ‘It’s a huge problem,’ one doctor says. The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the shortcomings of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that dwindled long ago, and then came the Great Recession of 2008, when local, state and federal budget woes forced sharp cuts in developmental and mental health services. “And we have nowhere near the resources in most communities to take care of these children in home settings.”
• How shock therapy is saving some children with autism (Apoorva Mandavilli, Spectrum, Oct. 16, 2016) Given its reputation, the most shocking thing about electroconvulsive therapy might be how beneficial — and banal — it actually is. From description for AHCJ award: "The term "electroconvulsive therapy" conjures the infamous scene with Jack Nicholson from the movie "One flew over the Cuckoo's nest," or similar such brutal scenes from popular culture. But this reputation is seriously outdated. More importantly, it belies a procedure that is in fact mostly benign and enormously helpful to people who are severely depressed or suicidal. This article is about a new use for ECT: treating children with autism who harm themselves repeatedly, sometimes to the point of blindness or death. Right now, there are fewer than 50 children with autism who are being treated with ECT, but for these children, ECT is a desperately needed life-saving treatment, say the children's parents and the psychiatrists who administer the therapy."
• Asperger Syndrome: What Teachers Need to Know (2nd edition) by Matt Winter
• Autism Resources for Parents – The Ultimate New Guide (Autism Parenting Magazine). Online links to resources and you can download free guide.
• The Asperger Parent: How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor by Jeff Cohen (valuable advice and how to find humor in the tough moments)
• The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome by Jennifer Cook O'Toole
• Assistive Technology resource page (UC Davis Mind Institute, a Center for Excellence in Developmental Disabilities)
Alternative seating for young children with Autism Spectrum Disorder: effects on classroom behavior (DL Schilling and IS Schartgz, J Autism Dev Disord. 2004 Aug;34(4):423-32, NCBI, on PubMed, 2004)
• Brain Changes Suggest Autism Starts In The Womb (Jon Hamilton, Shots, NPR, 3-26-14). Listen or read transcript.
• Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family by Jude Welton
• Communicating with an Autistic Child: A Parent’s Guide (Wise Old Sayings) This oddly misnamed site has a number of helpful pages, including this one which provides links to many tips and methods to help parents make a breakthrough connection with an autistic child in their life.
• Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies by Yvona Fast
• Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia by Natasha Campbell-McBride (on the relationship between neurological disorders and nutrition)
• Helping a Child with Nonverbal Learning Disorder or Asperger's Disorder: A Parent's Guide by Kathryn Stewart
• How to Teach Life Skills to Kids with Autism or Asperger's by Jennifer McIlwee Myers
• NLD From the Inside Out: Talking to Parents, Teachers, and Teens about Growing Up with Nonverbal Learning Disabilities by Michael Brian Murphy with Gail R. Shapiro
• Nonverbal Learning Disabilities at Home: A Parent's Guide by Pamela B. Tanguay
• Nonverbal Learning Disabilities at School: Educating Students With Nld, Asperger Syndrome and Related Conditions by Pamela B. Tanguay
• 101 Games and Activities for Children With Autism, Asperger's and Sensory Processing Disorders by Tara Delaney . More than one hundred games that help your child: make eye-contact, stay focused, and strengthen his or her motor skills; associate words with objects and improve language and numerical skills; learn how to interact with others, how to take turns, and other social skills needed for attending preschool and school.
• Raising NLD Superstars: What Families with Nonverbal Learning Disabilities Need to Know about Nurturing Confident, Competent Kids by Marcia Brown Rubinstien
• A Special Kind of Brain: Living with Nonverbal Learning Disability by Nancy Russell Burger
• Weighted Blankets: The Ultimate Use Of Calming Input For A Restful Sleep (Sensory Processing Disorders)
• David Mitchell: learning to live with my son's autism (David Mitchell, The Guardian, 6-28-2013) Novelist David Mitchell looks back on the heartbreak – and joy – of learning that his son had autism. Plus, an extract from the book by a young Japanese boy that helped him.
• The iPad: a Near-Miracle for My Son With Autism (Shannon Des Roches Rosa, BlogHer, 6-15-10) Great tips on apps that help her son draw, write, etc.
• Autism and Addiction: Coping with and Treating Your Dual Diagnosis (iAddiction). See also Cross Addiction: What is it and How is it Treated
• Autism on the Farm: A Story of Triumph, Possibility and a Place Called Bittersweet by Linda H. Davis (Kindle edition). Adults with autism have found a place at Bittersweet, a small farming community. Overseen and taken care of by trained volunteers, residents find ways to find safe and meaningful experiences through farm work.
• What I Learned from My Autistic Son: A Guest Post by Brenda Rothman (PLoS blog, 4-1-13)
• The Frowners (RadioLab, 12-29-08) Ever since Emanuel Frowner was a little boy, Emanuel was... different. He had trouble making friends. He had trouble looking you in the eye. His brother thought he needed psychological help, but his dad didn’t think there was anything seriously wrong, and worried that a diagnosis would hold him back. Flash forward 25 years, Emanuel’s now a grown man who’s sought a psychological diagnosis. What he finds out will change everything. But the tough question remains, did his dad’s attitude end up helping or hurting him in the end? Reporter Gregory Warner takes us on a search for answers. And do read the comments.
• A Family's Guide to Community-Based Instruction for Students with Disabilities (New Jersey Dept of Education)
• Not more, just different (The Economist 4-10-08). An explanation for the increasing incidence of autism
• A cry for help: Why some children with autism suffer in mainstream schools (The Economist 5-25-06)
• Social Stories (a tool for teaching social skills to children with autism and related disabilities)
• Tuberous Sclerosis Association (TSA) What is Tuberous Sclerosis Complex? TSC is a genetic disorder that cause tumors to form in various organs, primarily the brain, eyes, heart, kidneys, skin and lungs. It’s also the leading genetic cause of both epilepsy and autism.
• Indiana Production Of 'Curious Incident' First To Feature Actor With Autism As Its Star (WBUR, NPR, 9-14-17) Actor Mickey Rowe (@MickeyIsaacRowe) and Indiana Rep director Risa Brainin join Here & Now's Robin Young to talk about the show and what it means to cast an actor with autism as the star. "I think that young artists and actors with disabilities need to see role models who will tell them that, if you're different, if you access the world differently, then theater needs you and the world needs you," says Mickey Rowe, star of "The Curious Incident of the Dog in the Night-Time."
• "Swim Team" Film Review (Sheri Linden, Hollywood Reporter, 11-26-16) Documentarian Lara Stolman follows a trio of autistic athletes as they learn to compete and reach for independent adulthood. Follows "the first season of the Special Olympics team that Maria and Mike McQuay formed, tracking the athletes’ triumphs and challenges both in and out of the pool. As autism diagnoses continue to rise, the doc’s personal portraits of the work required to forge an independent life should connect with and inspire parents and educators....Swim Team doesn’t get into the nitty-gritty of dollar figures, but it makes clear that special-needs families can face financial burdens in addition to emotional stress. Delving into parental anxieties over kids’ job prospects, the film shows that public schools are not always forthcoming with crucial information about state-funded programs. Beyond high school graduation lie wait-lists for group homes and consultations with disability attorneys over the intricacies of legal guardianship."
• Serendipity and the Autism Spectrum (Ellen Granfield, The Establishment, 4-27-16) "All my life I’ve had a sense of magic, I can feel it in a place or thing...Because I could not function in the world, I was left outside it....There are plenty of reasons to tell one’s story. For one, it adds to the well of human knowledge and what disability means—but I want to talk about its greater meaning; what each of us holds within and why that makes understanding disabilities like the autism spectrum all the more important."
• A Move Abroad Gives One Woman the Chance to Belong (Jennifer Malia, Hunker, 7-28-17) "I felt more at home when traveling abroad than in my home country because no one ever expected me to be good at social interactions when speaking in foreign tongues. I didn't have the same pressure to avoid social awkwardness abroad as I did in America, which made it easier for me to feel at home traveling as an autistic woman."
• Desktop Diaries: Temple Grandin (Science Friday video), with Grandin explaining her autism thus: "I'm pure geek, pure logic." Missing a few social-interaction skills puts her in good company with geeks, whom we don't value enough. We have better cattle slaughter facilities in America, but not enough well-trained geeks. Books by or about Grandin include
---Thinking in Pictures: My Life with Autism by Temple Grandin
---The Autistic Brain: Helping Different Kinds of Minds Succeed by Temple Grandin with Richard Panek
---Temple Grandin: How the Girl Who Loved Cows Embraced Autism and Changed the World by Sy Montgomery (for young readers)
• What were you diagnosed with during the 80s? (Wrong Planet group discussion, found after Google searching "Shady 80s"
• Abuse or the Flu? My Autistic Son Couldn't Tell Me What Was Wrong (Susan Senator, Shots, NPR, 3-6-16) "My heart fell when a counselor called to say he was worried something bad might have happened to Nat, my severely autistic 25-year-old son. Nat has trouble talking, and was teary. What should I do?"
• The difference between ability and capability in Asperger's Syndrome (Planet Ace, 7-1--08)
• The Kids Who Beat Autism (Ruth Padawer, NY Times Magazine, 7-31-14) New research suggests that one in 10 autistic children sheds symptoms before adulthood. But no one knows why they do — or why others do not. This fascinating story, which among other things discusses A.B.A. therapy, a form of behavioral therapy, emphasizes autism's complexities--including what some kids feel when their symptoms, including arm flapping, go away. “When I was little, pretty often I was the happiest a person could be," says Carmine DeFloria. "It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable. Listening to really good music is the main time I feel that joy now. I still feel it in my whole body, but I don’t outwardly react to it like I used to.” See also Padawer's answers to Readers’ Questions About Children Who Beat Autism.
• The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida. Read online David Mitchell's introduction, A Peek Inside My Son's Head, by the author of Cloud Atlas on why he translated a book by a 13-year-old Japanese boy with autism. "Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words," writes Mitchell.
• How Will I Know You're Not Dead? (Raymond Abbott, Pulse, 4-10-15). See also Rendezvous (Pulse, 3-12-16), I'm happy (Pulse, 1-2-15). A social worker's lovely stories about Donald, a client with Asperger’s and Tourette’s).
• Ido in Autismland: Climbing Out of Autism's Silent Prison by Ido Kedar "opens a window into non-verbal autism through dozens of short, autobiographical essays each offering new insights into autism symptoms, effective and ineffective treatments and the inner emotional life of a severely autistic boy. In his pithy essays, author Ido Kedar, a brilliant sixteen year old with autism, challenges what he believes are misconceptions in many theories that dominate autism treatment today while he simultaneously chronicles his personal growth in his struggles to overcome his limitations."
• Navigating Love and Autism (Amy Harmon, New York Times, Autism Grown Up, Love on the Spectrum, 12-26-11). The moving and enlightening love story of Jack Robison and Kirsten Lindsmith, both of whom fall on the autism spectrum. "Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as 'mindblindness' — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships."
• Are we autistic people shaping the public's view of autism in ways harmful to our cause? by John Elder Robison, author of Look Me in the Eye: My Life with Asperger's and Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors, and High Explosives
• Autistic and Seeking a Place in an Adult World (Amy Harmon, New York Times 9-17-11).
• Exclusive: First Autistic Presidential Appointee Speaks Out (Steve Silberman, Wired, 10-6-10)
• This Dad Knew Exactly What to Do When His Autistic Son No Longer Qualified for Services (Liz Palmer, 22 Words, 2-27-15) "He worries about what will happen to him when he hits 22 and “flies off the cliff”…the cliff of services, support. This is a reality for the autistic community. At 22 you age out. No supports. Few opportunities. A lack of purpose. And sometimes no hope." "So he came up with a crazy idea." Let this inspire others!
• The Reckoning: The Father of the Sandy Hook Killer Searches for Answers (Andrew Solomon, New Yorker 3-17-14). A painfully honest piece; I keep wondering what I would have done.
• The Spark: A Mother's Story of Nurturing Genius by Kristine Barnett. Barnett’s son Jacob has an IQ higher than Einstein’s, a photographic memory, and he taught himself calculus in two weeks. At age two, when Jake was diagnosed, she was told he might never be able to tie his own shoes. Against the advice of her husband, Michael, and the developmental specialists, Kristine followed her instincts, pulled Jake out of special ed, and began preparing him for mainstream kindergarten on her own, resolved to follow his special interests--his "spark."
• Scratching the Horizon: A Surfing Life by Izzy Paskowitz with Daniel Paisner A book about surfing, the bohemian life, family, and being the father of a son with autism as well as founder of Surfers Healing.
• Mom murdered her autistic son after seeking help from therapist who believes in ‘Satanic mind control’ (Bethania Palmer Markus, Raw Story, 2-15-16). File under Shady 80s.
• What it's like to have a Brother with Autism (3-minute YouTube video, by Spencer Timme, about his brother Mitchel)
• Aspergian Pride (extensive links to resource and advocacy sites, including sites promoting neurodiversity as the next civil rights issue)
• AutismOne , a nonprofit, parent-driven organization that provides education and supports advocacy efforts for children and families touched by an autism diagnosis, holding the largest and most comprehensive annual autism conference in the USA.
• Autism Society of America (ASA)
• Autism Speaks (a fundraising organization, which is sharply criticized in this Wired story)
• Autism Tissue Program (ATP)
• Autistic Rights Together (ART) (an organization of autistic people and like-minded NT's (neurotypicals) who believe in empowering autistic people)
• Autistic Self-Advocacy Network (ASAN), a national group run by and for autistic adults ("nothing about us without us")
• National Network for Immunization Information (NNii)
• OASIS (Online Asperger Syndrome Information & Support)
• Pathfinders for Autism. Provides resources and information for Maryland families (a good role model for other states) and volunteers help train police and other officials on how to interact with people with an autism disorder.
• Simons Foundation Autism Research Initiative (SFARI). Research and news to autism community. Press release: It Takes Brains: Simons Foundation, Autism Speaks and Autism Science Foundation launch Autism BrainNet registration site
• UC Davis Mind Institute does leading-edge work on interventions with autism (a center of excellence in the University of California system). See its online resource center
• World Autism Awareness Day (April 2)
• WrongPlanet.net (Web community and resource for individuals, and parents of those, with Asperger's Syndrome, autism, ADHD, and other PDDs). See WrongPlanet video interviews, etc. on YouTube and Autism Talk TV
• The Autism Hub (the very best in autism blogging, with links to active blogs and to valued archives)
• Autism News Beat (an evidence-based resource for journalists, which has a blog roll along the right side, down a bit). See, for example, Live blogging the autism hearing (Autism News Beat 5-20-14)
• Amazing Adventures parenting autistic children
• Aspertypical (Hannah Belcher's blog). Watch this video of women diagnosed late with autism, telling their stories.
• Aspie in the Family blogroll
• Aspienaut--Wired Differently
• Autism blog (Psychology Today)
• Autism Daddy
• Autism Street
• Autism Schautism
• Autism from a Father's Point of View (Stuart Duncan)
• The Autism Wars (Kerima Çevik). See her blogroll (along left side)
• Confessions of an Asperger's Mom
• Disability Studies blogroll (scroll down left side for more blogs and archives)
• A Day in the Life of the Crazies Two adults, three children, one dog, and many diagnoses. Formerly My Family's Experience with Autism
• Find My Eyes
• Herding Cats (Phoebe Holmes)
• Kat's Cafe (Katrina Moody, here on "people first language")
• Life, Animated (based on the movie, but created as a platform for the Autism Affinities Project--because people with autism often make sense of a bewildering world through affinities from anime to Minecraft to maps). See NY Times review of the book.
• The Mighty (stories about autism spectrum disorder) Stories by and about people on the autism spectrum who have a different way of learning, communicating and processing the world around them.
• Mr. Asperger. I particularly liked this entry: Divorce an Aspies best friend.
• Musings of an Aspie (Cynthia Kim, author of the book Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life
• Planet Autism
• Redefining Typical (a mother, a son, a journey...with autism)
• Running to Be Still
• Thinking Person's Guide to Autism
• The Voyage
• Wrong Planet (discussion forum for individuals (and parents / professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences)
• Are You On It? If so, you're in good company. From Asperger’s to “Asperger’s,” how the spectrum became quite so all-inclusive. (Benjamin Wallace, New York, 10-28-12).
• Temple Grandin: The world needs all kinds of minds (a super Ted Talk, Feb. 2010). "To understand animals, autism, and art requires getting away from verbal language."
• Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life by Cynthia Kim, author of the blog Musings of an Aspie.
• Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood (foreword by Lorna Wing). See also Attwood'sThe Complete Guide to Asperger's Syndrome
• Fingers in the Sparkle Jar: A Memoir by Chris Packham. Memoir by the naturalist and wildlife campaigner describes growing up with Asperger’s syndrome and how his obsession with nature helped him.
• Life, Animated: A Story of Sidekicks, Heroes, and Autism by Ron Suskind. The story of Owen Suskind, a boy with regressive autism who couldn't speak for years, but who memorized dozens of Disney movies and later "turned them into a language to express love and loss, kinship, brotherhood. The family was forced to become animated characters, communicating with him in Disney dialogue and song; until they all emerge, together, revealing how, in darkness, we all literally need stories to survive." Will be made into a movie.
• The Geek Syndrome (Steve Silberman, Wired, Autism--and its milder cousin Asperger's syndrome--is surging among the children of Silicon Valley. Are math-and-tech genes to blame? Fascinating overview. Through the '90s, cases tripled in California. "Anyone who says this is due to better diagnostics has his head in the sand." "In another age, these men would have been monks, developing new ink for printing presses. Suddenly, they're reproducing at a much higher rate." One thing nearly everyone in the field agrees on: genetic predisposition. Identical twins share the disorder 9 times out of 10. In Asperger's Syndrome: A Guide for Parents and Professionals, psychologist Tony Attwood describes children who lack basic social and motor skills, seem unable to decode body language and sense the feelings of others, avoid eye contact, and frequently launch into monologues about narrowly defined – and often highly technical – interests. Even when very young, these children become obsessed with order, arranging their toys in a regimented fashion on the floor and flying into tantrums when their routines are disturbed. As teenagers, they're prone to getting into trouble with teachers and other figures of authority, partly because the subtle cues that define societal hierarchies are invisible to them. UK psychologist Lorna Wing "described the disorder as a continuum that 'ranges from the most profoundly physically and mentally retarded person … to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality.' ""A recurring theme in case histories of autism, going all the way back to Kanner's and Asperger's original monographs, is an attraction to highly organized systems and complex machines.""Clumsy and easily overwhelmed in the physical world, autistic minds soar in the virtual realms of mathematics, symbols, and code....These days, the autistic fascinations with technology, ordered systems, visual modes of thinking, and subversive creativity have plenty of outlets. There's even a cheeky Asperger's term for the rest of us – NTs, "neurotypicals."
• The Citizen Scientists (Sara Solovitch, Wired, 9-1-1) United by the Net and emboldened by their numbers, parents of desperately ill children are funneling millions into research, building vast genetic databases, and rewriting the rules of the medical industry. "Now parents often know more about diseases than health care providers. They want to be partners." There is faulty self-diagnosis and treatment spawned by the Internet, ugly fights about patent rights to genetic samples, and anti-vaxxers convinced that vaccines cause autism, but there is also "a spirit of community; a level of candor rarely broached in polite conversation; and a warehouse of information, often routinely monitored by medical specialists."
• Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone. Why this book? Because Aspergers presents differently among girls and women.
• Genius locus: Autism and extraordinary ability (The Economist 4-16-09). There is strong evidence for a link between genius and autism. In the first of three articles about the brain, the Economist asks how that link works, and whether “neurotypicals” can benefit from the knowledge
• Answer, but No Cure, for a Social Disorder That Isolates Many (Amy Harmon, NYTimes, 4-29-04, on Asperger's syndrome)
• Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger's Syndrome by Jennifer Cook O'Toole and The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-so-obvious Social Guidelines for Tweens and Teens With Asperger Syndrome, (both listed on (one of 15 books to read if your loved one is diagnosed with ASD (Asperger's Digest)
• Born On A Blue Day: Inside the Extraordinary Mind of an Autistic Savant by Daniel Tammet
• One Smart Bookie (Jack El-Hai, The Atlantic, May 2001) "He can't tell right from wrong." Jack profiles Max Weisberg, a man with savant syndrome—"someone who has special abilities that stand in stark contrast to his overall handicap... He made legal history when he hired a criminal defense attorney who asserted that Max’s disabilities made him incapable of distinguishing right from wrong."
• Extraordinary People : Understanding Savant Syndrome by Darold A. Treffert, author also of Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant