Congressional Autism Hearing Recap

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)…

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Disobedience or Disability? An Essay on Sensory Processing

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…

To a Parent in a Parking Lot

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…

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Autism & Gut Inflammation Research: Wakefield’s Taint Persists

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,…

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Speak Out: Congressional Autism Hearing Nov 29

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 – A Film about Autism in France

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…

Total Customer Service Fail: One Autistic’s Story

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…

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Talking About Autism, Disability, & Hygiene

Shannon Des Roches Rosa www.squidalicious.com Most parents fret about their kids’ hygiene and how it is affected by factors like circumcision, tooth brushing, or toilet training. Said fretting escalates when the kids in question have a disability, but hygiene doesn’t have to be the skunk cabbage in the parenting bouquet — not if parents do their best to understand why hygiene can be complicated, take cues from self-advocates with insights parents and professionals cannot provide, encourage self-care, recognize that not all hygiene needs will be rooted in disability, and help make self-care part of a routine. Circumcision is a standby topic in parenting circles. Arguments both for and against the snip invoke culture, religion, sensation retention, or wanting Daddy to have a penis twin. But few mention the possibility of conditions like cerebral palsy or the fine motor challenges that often accompany autism, and how those affect uncircumcised penis care.…

Autism and the New DSM-5 Criteria: Who Will Be Left Behind?

Emily Willingham www.emilywillinghamphd.com When news broke that the autism spectrum categories of Asperger’s disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) would get subsumed into the wider maw of a general “autism disorder,” people worried. They worried about autistic people who are quite verbal or who have typical cognitive skills. What would happen to individuals whose autism doesn’t manifest in those terms as profound? The biggest concern was a new category for the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5, social communication disorder. Would people like my son, diagnosed with Asperger’s and whose autism includes echolalia, anxiety, motor deficits, repetitive behaviors, learning differences, and other features well beyond the social, get rolled into what looks like a flimsy, catchall not-safety net of “social communication disorders”? And what other kind of communication is there if not social? Based on early reports, the concerns were legit. One alarming presentation at a…

Hurricane Sandy Means Emergency Needs for Autistics & Special Ed Students

Hurricane Sandy disrupted so many lives and displaced so many people in our autism, disability, and special ed communities. Many of those affected are still struggling to bring routine, safety, and necessities back into their lives — and not all who need assistance are getting the support they need.  Here are two personal accounts about what’s not working right now in Sandy’s aftermath, what needs to change, and — for those who want to help — how it’s so much more important to donate money than goods. Carol Greenburg aspieadvocate-ascd.blogspot.com I am the autistic mother of an autistic 10-year-old. I want to share something that happened in the aftermath of Hurricane Sandy. My son, who has not had school or therapy for a week and is disconsolate over the disruption of his routine, finally had some therapy scheduled for this morning. Public transit is not yet well restored enough in…