Shannon Des Roches Rosa

I had the good fortune to speak at at well as attend last week’s UCSF Developmental Disabilities Conference, thanks to the networking wizardry of TPGA contributor Laura Shumaker. It was an experience for which I am profoundly grateful — it exemplified The Thinking Person’s Guide to Autism’s mission of bringing together parents, professionals, and adults with autism so we can learn from each other, so our community can become stronger and more effective. Though the conference covered more than autism, I am going to focus on a few autism-related takeaways.

iPads and Autism

Danielle Samson, MA CCC-SLP and Shannon Des Roches Rosa, MA

My talk with crackerjack SLP Danielle Samson opened the conference. Danielle covered autism, iPads, and AAC devices from the professional’s perspective, followed by my perspectives as an autism parent, community member, and former educational software producer. It was on most points a condensed version of the talk Danielle and I gave in January, at Via Services in Cupertino:

  • iPads can be a game-changer for kids with autism. This was underscored by playing the autism section of a recent Apple iPad video featuring a very cute ten-year-old boy (starts at 3:50).
  • iPads aren’t for everyone. It’s important to do an AAC evaluation to see if the device is compatible with your child’s needs and abilities. The SETT framework is a helpful resource.
  • It’s important to try out an iPad before buying one. If you don’t know someone who has one, call an Apple store and ask when their slow times are, and bring your child by then. And it doesn’t hurt to ask if the store will let you come in 15 minutes early, before other customers arrive.
  • Anecdotal information about the wonders of iPads is great, but until we have research and evidence backing up iPads for education and as AAC devices, school districts are unlikely to fund them. But research is emerging, such as the study Learning: Is there an app for that? by Cynthia Chiong & Carly Shuler.      
  • Buying a 3G iPad doesn’t commit you to the network — it gives you the option to buy the subscription by month, which is a nice backup if you intend to do any traveling. The wifi still works, of course.
  • Safety/Monitoring: Make sure you’re familiar with the Restrictions options in your iPad’s Settings, so you can hide YouTube and Safari if need be, and turn off the Delete Apps function — I know Leo has certainly accidentally deleted an app or two (thankfully, I had them backed up on my computer).
  • Get as much iPad storage as you can. Leo’s 16 GB iPad filled up long ago, mostly due to movies — but as apps continue to grow in size (e.g., The Elements is 1.71 GB) and since the iPad2’s camera records video, storage can be an issue for many of our families.
  • For recommended autism apps, including links to other resources and research, see the iPad Apps for Autism spreadsheet I maintain with Jordan Sadler SLP and Corina Becker.

Various Perspectives on the Diagnosis of Autism

Barbara Bennett, MD; Fawzia Ashar, MD; Gary Blank, PhD

My primary takeaway was that doctors and researchers see “autisms” rather than autism, and that there are a variety of autism phenotypes. Well, yeah — that is evident to me from the sample of TPGA editors & their families. More points from the talk:

  • We need to diagnose autism because services and interventions follow that diagnosis.
  • Infant sibling studies are important. They help with earlier diagnoses, which in turn helps with earlier intervention and better outcomes.
  • We need to move away from the “Lack” or “Deficit” model, and focus on supports.  
  • An adaptive evaluation needs to accompany all autism diagnoses, and treatment plans really need to focus on adaptive living.
  • The main question with autism should always be: How do we improve quality of life and quality of family life?
  • Autism stakeholders, especially Asperger’s stakeholders, need to keep on top of the DSM-5 criteria as they evolve, and remember that the DSM is not set in concrete.

Nothing About Us Without Us: Partnering With Autistic Adults to Improve Healthcare

Dora Raymaker MS

Listening to Dora give her talk was a delight — mostly because I love being around other women who are openly, unrepentantly geeky. But her subject was serious business despite her light tone.

  • Dora spoke about CBPR, Community-Based Participatory Research.
  • AASPIRE is the Academic Autistic Spectrum Partnership in Research and Education. Dora is a co-founder.  
  • Part of AASPIRE’s mission is to encourage the inclusion of people on the autistic spectrum in matters which directly affect them, and to include adults on the autism spectrum as equal partners in research about autism.
  • Health care providers should be open to accommodations and strategies that may improve interactions with autistic patients, and thereby positively impact health outcomes.
  • For more information and to get involved, visit AASPIRE’s Healthcare Study 1 project page.

Making a Difference Through Prevention

Surgeon General Regina Benjamin MD, MBA

Surgeon General Dr. Regina Benjamin

Dr. Benjamin was as impressive as she was likable — quite the combination. Her primary message: we should never forget that one vocal person standing up for their beliefs can make a difference.

  • President Obama is trying to help states provide grants to help support people with developmental disabilities with independent living. This is being added to the budget even as other items are being taken away.
  • Doctors can take care of a lot, but their prescription pads can’t care of:
    • Adequate housing
    • Employment
    • Clean water
    • Learning disabilities
  • Health care needs to be about eliminating health disparities.
  • Prevention is the foundation of her work — on focusing on what we can do, not on what we can’t do. This includes government health initiatives like Michelle Obama’s Let’s Move program.
  • She considers mental health to be as big an issue as any other health issue like blood pressure, etc. She has seen first hand the devastating effects of mental health crises, depression, etc. on the Gulf Coast after Hurricane Katrina.

The other speakers were terrific, and I’m hoping to interview Clarissa Kripke, MD, for TPGA in the near future. I hope these summaries communicate the breadth of topics covered, and how inspiring and informative conferences can be.