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Interview: Dr. Sally Ozonoff on the MIND Institute Infant Sibling Study

Dr. Sally Ozonoff is the Principal Investigator of the Infant Sibling Study Team at the UC Davis MIND Institute. We talked with Dr. Ozonoff about her autism research work, how the Infant Sibling Study operates, and what the study does and does not mean. This interview took place before yesterday’s CDC announcement about autism prevalence rates, but Dr. Ozonoff’s team had some similar findings within their own study, especially regarding earlier/more intense scrutiny leading to earlier and increased rates of autism diagnoses. How did you become involved with the Infant Sibling study? Is it in line with your previous areas of research? I have always been interested in diagnostic issues within the autism spectrum. I began my work in the autism field researching individuals with Asperger syndrome, trying to understand if and how they differed from individuals with autism. This was back in the early 1990s, when Asperger syndrome had…

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TPGA Welcomes Five New Affiliate Editors

Update: TPGA reorganized in Spring 2014, transitioning from a mostly-publishing focus to a mostly social media and information sharing-focus — and parted ways with our affiliate editors at that time. We remain grateful for their positive contributions to our community. —- We have big, wonderful, very exciting news: Five new affiliate editors have joined Thinking Person’s Guide to Autism: Kerima Cevik Rachel Cohen-Rottenberg Rob Gross Kassiane Sibley Sandy Yim We believe our new editors will bring unique perspectives to TPGA, and make us a better, more inclusive autism resource. We chose them because we respect them, we think they’re smart, compassionate, and fair, and we think they’ve consistently shown us where the holes lie in our autism coverage. You’ll see them on our Twitter and Facebook streams, as well as commenting on this site for TPGA. Please join us in welcoming them, heartily: Kerima Çevik is the neurotypical, married mother…

The Most Spectacular Thing of All

Susan Senator www.susansenator.com In 1993 when Nat was first diagnosed with Pervasive Developmental Disorder, (PDD) under the “Autism Umbrella,” I asked the doctor what do you do about that, what is the treatment? “Education,” he replied. He went on to tell me that no one really knew which approach was best, and that there were many schools of thought. “It is up to you to observe and figure out what works for Nat. When something is right for him, you’ll know,” he continued enigmatically. But I envisioned Nat at school — though back then I could barely picture that, he seemed so little and vulnerable — and this advice seemed wrong.  He needed me, not school, I remember feeling. He would be bewildered by school. Lost. But the doctor was saying that he should actually be in school for as many hours as possible. (No one said “at least 30-40…

Sarcasm 101

Cheryl Dorfman www.littlebitquirky.com I am a sarcastic person. I mean a really sarcastic person. I can’t help it; I just am! When I was pregnant, my husband and I always joked that our unborn daughter better have a good sense of humor if she was going to survive with us as parents. This “sense of humor” included having to put up with sarcasm. One trait of people who have autism or Asperger’s is that they can have a really hard time distinguishing when somebody is being sarcastic — they can be very literal. For example, if you ask an Aspie if the “cat’s got your tongue,” they may wonder if you somehow think a cat ran off with their tongue. To help my daughter out in this area — and because I just cannot turn off my sarcasm — I continue to use my sarcasm non-stop around her. Because of…

Every Kid Is A Person

Jennifer Byde Myers jennyalice.com I wasn’t asked to have a conference with Lucy’s teacher, Ms. June, but Lucy asked me to make an appointment just the same. I sort of wanted to check-in anyway given that my daughter is already a different kind of person than I was at her age with her own way of learning things and her own worries and passions. She is enough like me that I see myself –my mannerisms, for example, and I can hear my inflections in her voice, and yet she is enough different that I do not always understand what makes her tick when I tock. So I like to get other people’s perspective on her whenever I can. We have lots of people who report about Jake to us, since he can’t tell us his stories himself. There is even a journal that travels back and forth to school each…

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Interview: David Niemeijer, Founder & CEO of AssistiveWare

AssistiveWare’s Proloquo2Go is one of the most popular software programs and now apps for people who use AAC — Augmentative and Alternative Communication. They also make the excellent social story app Pictello. David Niemeijer is the founder and CEO of AssistiveWare, and talked with TPGA about the past, present, and future of AssistiveWare and their apps. —- Tell us about AssistiveWare — how it got started, when, and what products you make. AssistiveWare has its roots in 1995 when Giesbert, a friend of mine, had a serious car accident and broke his neck. I developed KeyStrokes, an on-screen keyboard for the Mac so that Giesbert could not only type using a HeadMouse but also access all the keyboard shortcuts in Photoshop (see http://www.assistiveware.com/giesbert.php). Later I released KeyStrokes as freeware but got so many requests for improvements that I decided that if I was to make all those improvements I would…

Remember One of Our Own: George Hodgins

Zoe Gross illusionofcompetence.blogspot.com Zoe and her father Rob light candles in honor of George Hodgins. Photo © 2012 Steve Silberman Zoe is an autistic self-advocate. She recently organized and led a vigil to remember and honor George Hodgins. She read the words below at the ceremony, which was attended by self-advocates and their supporters — many of whom had been part of George’s life. Many of whom spoke out themselves. —- Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn’t know George, but I can’t stop thinking about him. Maybe it’s because we have a lot in common — we lived near each other, we were the same age, we’re both autistic, although we led very different lives. I would like to have met George, but I can only mourn him.…

Autism and the Circle of Friends

Emily Willingham biologyfiles.fieldofscience.com We began by failing our son, TH. We failed to be vigilant enough about his reputation. We were lax in monitoring the growing perception of him as a bully, while simultaneously, he was on the receiving end of bullying all day, every day. His reputation as a bully spread beyond the school walls and playground boundaries, leaking into our neighborhood, speeding through wires and wireless, the talk of the bus stops. His size, his odd behaviors, his loud and unexpected non-sequiturs, and his violations of personal space drove the rumors on. When we learned all of this, we were devastated. Then, we heard about the Circle of Friends (COF) program. The basic principle of this program is that placing knowledge in the hands of others also means giving them understanding and compassion. For us, that meant that somehow, we had to get across to our son’s classmates,…

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I Don’t Know His Name, But His Face Rings a Bell

Allison Blazek www.drblazek.com image © icanhascheezeburger.com [photo: Black-and-white photo of Anton Levey, a bald white man with a dark goatee, holding a snake. Meme-style text on photo reads, “Pleased to meet you, hope you guess my name!] You are at a party. You are introduced to the wife of an acquaintance. You have met her before over the last ten years, at least three times. She shakes your hand as if she has never seen you. As she walks away, you are likely to think, “She is so rude! She knows she has met me before.” Maybe you say it out loud, and maybe your friends agree with you, having experienced the same thing with her as well. But there is another explanation. She really does not remember meeting you. She has prosopagnosia, also known as facial blindness. Once thought to be very rare, it appears to be more common…

What the UK High Court’s Ruling on John Walker-Smith Means and Doesn’t Mean

Liz Ditz lizditz.typepad.com On March 3, 2012, Mr. Justice Mitting of the UK’s High Court of Justice ruled that the UK’s General Medical Council (GMC) had acted improperly in Professor John Walker-Smith’s hearing on charges of serious professional conduct, and therefore he quashed both the finding  of serious professional misconduct and the sanction of erasure.  (You can find the entire ruling at http://www.bailii.org/ew/cases/EWHC/Admin/2012/503.html.) It’s important to be very clear about what this ruling means. Mr. Justice Mitting did not find that Professor Walker-Smith’s actions were medically necessary or ethical. The ruling does not exonerate Walker-Smith. That was not what the hearing was about. Mitting was only ruling on the conduct, the decision-making, of the GMC’s Fitness to Practice panel. More broadly, Mitting found aspects of the GMC’s procedures to be flawed. And Mitting’s  ruling has nothing to do with the retraction of the 1998 paper. It’s still retracted. It does not validate Andrew Wakefield’s integrity, or affect the…