Keep Calm and Think Critically: The CDC’s 1 in 68 Autism Numbers

March 28, 2014January 31, 2022 by Shannon Des Roches Rosa

Shannon Des Roches Rosa www.thinkingautismguide.com Yesterday the U.S. Centers for Disease Control and Prevention (CDC) held a media briefing to announce and discuss readjusted estimates for autism prevalence: 1 in 68 children. But what does that estimate actually mean? Well, that takes some critical analysis, digging, and sifting, which we’ll walk you through, starting with the CDC’s Dr. Colleen Boyle’s opening statement: “CDC estimates that one in 68 children has been identified with autism. This estimate is based on information collected from health and special education records of children who are eight years old and living in 11 communities in Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, north Carolina, Utah, and Wisconsin in 2010. These data are from CDC-sponsored autism and developmental disabilities monitoring network. The new estimate exceeds previous overall estimates, roughly it’s 30 percent higher than our last estimate of one in 88 children. To better…

Disability

April 2014: What Do Autistic People Want, What Do Autistic People Need?

March 24, 2014January 31, 2022 by Shannon Des Roches Rosa

TPGA traditionally supports April as Autism Acceptance Month. This year, our Autism Acceptance theme is actually a question: What Do Autistic People Want, What Do Autistic People Need? The media does ask questions about autistic people — but it tends to write about autistic people, worry about autistic people, and make books and movies about autistic people — without actually consulting autistic people. If you don’t believe us, try searching the Internet for most autism topics, then observe how outnumbered autistic perspectives are — and how often buried — compared to perspectives on those same topics by parents, professionals, “experts,” or reporters. So we’re using April to ask our autistic friends and community members What Do You Want? What Do You Need? We’ll be featuring the answers all month long. If you’d like to participate, or support your child or loved one in participating, please contact us.

Disability

Should Parents Tell Employers About Their Child’s Special Needs?

March 22, 2014January 31, 2022 by Shannon Des Roches Rosa

Anonymous Kids with special needs have, well, special needs. These needs not only present my kid with a lot of challenges; sometimes they mean I need to take unscheduled time off work. (It’s just how it is.) Aside from the time I need for standard IEPs, evaluations, school visits, and the like, my kid has also spent a fair amount of time in the hospital. My kid isn’t the type you leave and say, “be nice to the nurses.” You just don’t do that to a minimally verbal kid with intellectual disability. When my kid is in the hospital a parent has to be there. Which means no work during that time. When my kid was in the hospital, keeping my manager in the loop was not my main priority. I thought leaving a message on his voicemail, such as, “I’m in an ambulance with my son. It’s two AM…

Disability

Advocating for TPGA Principles at the UCSF Developmental Disabilities Conference

March 16, 2014January 31, 2022 by Shannon Des Roches Rosa

One week ago, TPGA editors Shannon Des Roches Rosa, Jennifer Byde Myers, Emily Willingham, and Carol Greenburg spoke as a group at the University of San Francisco’s Developmental Disabilities Conference. It was an honor and a privilege to talk with a group of (mostly) professionals about how we use the power of social media to support our principles and TPGA’s mission, including autism acceptance and civil rights for people with disabilities, evidence-based approaches to autism supports and research, and debunking autism myths and misinformation. TPGA editrixes, post-UCSF session Shannon, who opened the discussion, is TPGA’s senior editor, and the parent of an autistic child. Thinking Person’s Guide to Autism (TPGA) is a book, a blog, and a community. We aim to support autistic people and their families, counter negative media messages and autism stigma, and provide positive autism attitude role models. We created TPGA in 2010 to be the resource…

Disability

Best Autism Conference Ever: The UK National Autistic Society’s Professional Conference 2014

March 5, 2014January 31, 2022 by Shannon Des Roches Rosa

Shannon Des Roches Rosa www.squidalicious.com I had no idea autism acceptance and understanding in the UK were so much more culturally ingrained than in the US. Granted, there is still much work to do, and government cutbacks in housing for people with disabilities continue, etc. But the disconnect was shocking. And, I was told, much of it had to do with the National Health Service covering autistic people’s needs as a matter of course. Families don’t need to worry about paying for autism services; they need to worry about getting their kids and family members and selves appropriate services. As a result, according an American parent friend who lives in Yorkshire, there is much less of the catastrophizing of autism than we see in the States. I witnessed these attitudes and approaches during the National Autistic Society‘s (NAS) Professional Conference 2014 in Harrogate. I saw an effective national autism organization…

Disability

NAS Professional Conference 14: Dr. Roy Richard Grinker

March 5, 2014January 31, 2022 by Shannon Des Roches Rosa

NAS Professional Conference 14: Dr. Roy Richard Grinker Storify by Shannon Rosa Wed, Mar 05 2014 20:21:36 Edit NAS Professional Conference 14: Dr. Roy Richard Grinker A compilation of live tweets from Dr. Grinker’s presentation The Cultural Origins and Futures of Autism Spectrum Disorders, at the National Autistic Society’s Professional Conference 2014 in Harrogate, UK. Any errors or omissions are my own. -SR Shannon Rosa@shannonrosa Dr. Grinker’s work centers on #autism, but from an anthropological perspective. Especially focusing on culture & perception. #NASprof14 Tue, Mar 04 2014 11:49:36 ReplyRetweetFavorite Shannon Rosa@shannonrosa Dr. Grinker’s #autistic daughter is now 22 years old. #NASprof14 Tue, Mar 04 2014 11:51:37 ReplyRetweetFavorite Shannon Rosa@shannonrosa We know very little about autism internationally, yet there is a wave of #autism awareness around the world. -Roy Richard Grinker #NASprof14 Tue, Mar 04 2014 11:52:19 ReplyRetweetFavorite Shannon Rosa@shannonrosa Traditional healers in South Africa find out about #autism the same…

Disability

NAS Professional Conference 14: Dr. Stephen Tyler on Severe Challenging Behaviour

March 4, 2014January 31, 2022 by Shannon Des Roches Rosa

NAS Professional Conference 14: Dr. Stephen Tyler Storify by Shannon Rosa Wed, Mar 05 2014 21:04:31 Edit NAS Professional Conference 14: Dr. Stephen Tyler A compilation of live tweets from Dr. Tyler’s presentation Severe Challenging Behaviour: Impact, Perceptions and Support at the National Autistic Society’s Professional Conference 2014 in Harrogate, UK. Any errors or omissions are my own. – Shannon Rosa@shannonrosa Listening to Dr. Stephen Tyler on Severe Challenging Behaviour: Impact, Perceptions & Support. #NASprof14 #autism Tue, Mar 04 2014 16:19:27 ReplyRetweetFavorite Shannon Rosa@shannonrosa Stages of ignorance include: Innocence, where you’re sure you can learn. #NASprof14 Tue, Mar 04 2014 16:20:41 ReplyRetweetFavorite Shannon Rosa@shannonrosa The final stage of ignorance: You know you don’t know, other people know you don’t know, & that’s OK. #NASprof14 #autism Tue, Mar 04 2014 16:22:36 ReplyRetweetFavorite Shannon Rosa@shannonrosa “Challenging” behaviors often happen when #autistic people are caught by surprise. #NASprof14 Tue, Mar 04 2014 16:26:09…