What I've been reading - June 2014

Here are some things I've been reading that you might find helpful, informative, or inspiring. Bury My Son Before I Die. "I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do." Gut-wrenching and brutally honest. Read more

When You're Gone: Practical Planning for Your Child's Future. A helpful and thorough guide to the things special needs parents should do now to help their child after they're gone. Read more

The Obsessive Joy Of Autism. "If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not 'age-appropriate', stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared." Read more

Sesame Street, This is an Autistic Speaking. An adult with autism makes a heartfelt plea to Sesame Street to reconsider its partnership with Autism Speaks, an organization she feels stands in stark contrast to the inclusion and acceptance Sesame Street is known for. Read more

On Education and Communication; A Message to Parents, Professionals and People with Autism. A powerful, hopeful message from Ido, a young man with autism who, though once written off by teachers and therapists, is now proving them all wrong. Read more

I Am a Pushmi Pullyu. A 50-year-old with autism comes to grips with being both an extrovert ("Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist.") who struggles with social situations, sensory issues, and PTSD. Read more

Tips for Encouraging Joint Attention. Fun, easy ways to do just what the article title suggests. Read more

What I Wish Your Child Knew About Autism. Ten things one mom wants you and your non-autistic child to know about her son, Leo. Read more

Out of the Closet. Observations by Ido on all the children who are "new communicators," finding their voice through assistive technologies. Read more

And finally...

Mayor de Blasio and Speaker Silver Announce New Steps to Help Families of Students with Disabilities. Great news for NYC families — like ours — who have struggled with the DOE. Read more

Science + Autism Reading

When C first got his lung disease diagnosis, and then his autism diagnosis, I scoured the web looking for reliable sources of information and insight. Below are a few of my favorite science + autism websites, blogs and tweeps. What are yours?

  • Emily Willingham is a scientist and writer who has a son on the spectrum. She explores — and often rips apart — the latest in autism pseudoscience on her blog, her Forbes column, and on Twitter.
  • Cracking the Enigma, a blog by research fellow Dr. Jon Brock, focuses on "cognitive and neural mechanisms involved in developmental disorders including autism, Williams syndrome, and Down syndrome." He also has a Twitter feed.
  • Left Brain / Right Brain is an excellent autism-focused science website.
  • Autism News Beat is a blog by the father of a 16-year-old boy with autism. The writer's goal is to help journalists write about science, and autism in particular.
  • The Autism Science Foundation is a non-profit organization dedicated to helping researchers and scientists fund and publicize their work. It's a great place to keep up with the latest in science-based autism research.
  • And, on a lighter and non-science-related note, my favorite Dad blogger.

ASD Diagram

I designed the (hopefully) simple graphic below to help people understand the family of Autism Spectrum Disorders — as outlined in the DSM-IV — and how they relate to one another (click on the image to see a larger version). I did not include Rett's Disorder or Childhood Disintegrative Disorder, as they usually receive their own diagnoses apart from an ASD.

As you can see, much of the confusion comes from the duplicative use of terms like PDD and ASD at both the category and sub-category levels.

It's important to note that the just-approved DSM-V subsumes both PDD-NOS and Aspergers into one category called, quite simply, Autism. In addition, a new category called Social Communication Disorder has been created to hopefully account for children who don't meet the new ASD criteria but still have deficits in the key areas of communication and social skills.

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Let me know what you think on Twitter: @1asddad

Autism Science News

A lot is happening in autism science at the moment, especially in the areas of etiology and diagnosis. Here are some interesting articles I've come across in the past few months:

My Autism App: A Setback

Unfortuantely, my plans to develop a simple Web- and app-based autism evaluation tool for concerned parents has hit a snag: the American Psychiatric Association denied my request to use their DSM criteria for autism as the basis for the tool. However, hope is not lost: I have some ideas about how I might incorporate other diagnostic criteria into the tool, and in the process make it an even more robust and interesting experience. It's not back to the drawing board, but onward and upward.