Jaden Walker about.me/jaden.walker A few days ago, congress held a panel on the rising prevalence of autism. As I worried, a great portion of the debate devolved into the long debunked connection between autism, vaccines, and mercury. To put it mildly, I spent a lot of it with my palm firmly attached to my face. One of the redeeming portions was near the very end, where two actual autistics were allowed to speak: John Michael Carley and Ari Ne’eman. While I won’t get into everything that was said (these two were brilliant, as always), one moment is stuck in my head and I just can’t shake it. One of Carley’s comments was (my quote is probably not exact), “Your sons and daughters with autism can hear what you say about them and read what you write about them.” Before he’d even fully finished the sentence, several people behind him began…
Year: 2012
Kate A year from now, I turn thirty. A year from now, many people my age are married, with a kid or two on the way. At the very least, they are living on their own, and supporting themselves. Living with your parents is okay in your twenties, but your thirties? That’s just too long for me. I want to be out on my own, doing my own thing, and much as I adore my mother I think I’ve had enough. Yet I have the sinking feeling that I will still be here, still be living at home and cobbling together part time jobs, and damn, but I’m sick of it. I’ve been looking for work for five years now. Five years! I finished my master’s thesis in the fall of 2007 and started interviewing for positions that fall. I’ve since gone on dozens of interviews at human services…
Our science editor Emily Willingham live-tweeted Thursday’s Congressional autism hearing from the perspective of a scientist, autism parent, critical thinker, and human. She Storified and annotated the experience, turning offensive keywords and laughable pseudoscience terms into her own version of Autism Bingo. Enjoy!
The stated goals of yesterday’s Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children: A Look into the Federal Response to the Rising Rates of Autism” were to “…get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder.” This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post. The hearing witnesses (and each’s official testimony): Alan Guttmacher, M.D. (testimony) Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health Coleen Boyle, Ph.D. (testimony)…
Tony and Mary Brandenburg theebrandenburgs.blogspot.com Taking a shower feels like needles stabbing my head! The sound of that fan is making my ears hurt. I feel like I’m suffocating when you hug me. Image source: TVTropes.com Maurice Sendak, who wrote and illustrated Where the Wild Things Are, was amazingly astute in his observation of children for a person who had none of his own. During his acceptance speech for the Caldecott Medal in 1964 Sendak stated that: “… from their earliest years children live on familiar terms with disrupting emotions, fear and anxiety are an intrinsic part of their everyday lives, they continually cope with frustrations as best they can. And it is through fantasy that children achieve catharsis. It is the best means they have for taming Wild Things.” When an outsider is simply observing a child’s public behavior — especially the challenging ones — it may be difficult…
Meg Evans megevans.com I met you last weekend when I was leaving a crowded shopping center. Your son, who might have been about ten years old, suddenly did a cartwheel in front of me while I was walking to my car. You took hold of your son’s hand and then glanced toward me and apologized by saying, “He’s retarded, sorry.” I didn’t say anything to you before you went on your way. No doubt your attention was focused on keeping your son safe, and rightly so. You wouldn’t have wanted a nosy stranger to lecture you on how your son might feel about your choice of words. Indeed, you probably believed that your apology was the best way to protect your son’s feelings, by letting me know that there was a reason for his behavior. I’m sure there must have been many times when ignorant, judgmental people yelled at your…
Emily Willingham emilywillinghamphd.com Stomach Endoscopy. Source: Wikimedia Commons Are autism, gut inflammation, and immune issues linked? One recent sponsored supplement published in the journal Pediatrics argues that they are. There’s certainly some evidence, although quite mixed, hinting at a link between immune or gut issues and a subset of people with autism, although which one triggers the other is nowhere near resolved. What one might hope is resolved is that it’s difficult to construct solid scientific arguments on a shaky foundation that incorporates retracted papers. Th Pediatrics GI-autism supplement reflects information derived from a symposium conducted in 2009, one convened to talk about GI problems and autism. The authors are recognizable as those whose interest has very much been focused on autism as inflammation, particularly gut inflammation. The problem has been pinning down specifically what that inflammation might be and where it occurs. To demonstrate that such evidence has been identified,…
The U.S. House of Representatives’ Oversight and Government Reform Committee is planning a November 29 meeting on “rising autism rates and the federal government’s response.” From The Hill.com (via Left Brain/Right Brain): The panel, chaired by Rep. Darrell Issa (R-Calif.), has invited witnesses from the National Institutes of Health and the Centers for Disease Control and Prevention, as well as Autism Speaks and other advocacy groups. Autism rates are rising quickly. One in 88 children has been diagnosed with autism spectrum disorder (ASD) by age 8, the CDC reported in March, a dramatic increase from its previous estimates. The Oversight Committee’s witness invitations say the Nov. 29 hearing “will address the federal response to the recent rise in ASD diagnoses, as well as the allocation of government resources for ASD. It will also review research and treatment options for those diagnosed with ASDs.” We at TPGA are concerned that no…
Shameful shamefuldocumentary.com Alex Plank and NoahTrevino are wrapping up editing on a documentary film entitled “Shameful”, which reveals the negative treatment and educational neglect of autistic youth in France, and the dramatic effect it has on those families. They traveled throughout France for over a month interviewing parents and meeting young autistic children in their homes, capturing the frustration, and angst of caretakers as they try to navigate a system that both blames the presence of autism on parents, and neglects to provide any educational structure for the children. I spoke with them several weeks ago. What led you to the Project? We heard about the issues in France through a conversation and thought that the topic would be a good fit for documentary. We had heard about “packing” [a controversial treatment where children are wrapped in wet sheets for hours at a time, which is often repeated over…
Have you ever been in a customer service situation in which your or your child’s need for accommodation was either ignored or dismissed? We suspect Jaden’s story is far from uncommon. This needs to change. Jaden about.me/jaden.walker I have autism. Since my diagnosis at age 25 I’ve never been shy about this. After never understanding why I’ve had trouble with so many simple things my whole life, I absolutely love that I have the answer now. It’s been six years since my diagnosis, and it still blows my mind every day to realize it. I never use it as an excuse for bad behavior, but simply as an explanation if I need more time or help with something. Many years back, I signed up with AT&T for an iPhone. I do not use phones if I can avoid it. My girlfriend and I had a home phone if it was…