Wednesday, November 18, 2015

ASHA Staff Meet Best-Selling Author John Elder Robison

Photograph compliments of Ben Sledge.
ASHA's diversity team planned a wonderful opportunity for ASHA staff today. They arranged for John Elder Robison, author of Look Me in the Eye, Be Different and Raising Cubby, to come in and talk with us about his experience growing up with an autism spectrum disorder. 

Mr. Robison stressed the importance of identifying children on the autism spectrum early and getting them services -- services that are most often provided by speech-language pathologists. He's a wonderful story teller and the time flew by as he talked while a slide show of his photographs played in the background.  



He shared that he grew up at a time when kids who could talk were not recognized as autistic. (He wasn't diagnosed until he was 40 years old.) He stressed how hard it was to grow up constantly being rejected. People are sometimes reluctant to label children as autistic, but he said if we don't assign a diagnosis other kids will dispense significantly uglier labels like retarded and stupid. 

In their reluctance to have their children labeled as autistic, parents sometimes tout that society should accept their children as they are. He said that "shit sounds noble," but weirdness doesn't play well in the real world. (The man does not mince words.) He suggested we have a duty to teach kids to behave in ways that they will be accepted and welcomed. By making the diagnosis less shameful and humiliating, parents will become more accepting. He found his diagnosis to be empowering and transformational. 

The autism community needs heroes. He suggested that they are in the place the gay community was years ago -- in the closet -- because of shame and fear of being excluded. People with autism need role models. To achieve this he suggested we focus on strengths. People on the autism spectrum can be extraordinarily gifted, but their inability to do things as society expects today can be crippling.  "Everyone in school is really quick to tell us all the shit that is wrong with us." No one tells us what we're good at and what we may be able to do.  

Generations ago people with innate skills like this could be successful, but they are hugely disadvantaged today because of the way we are taught. Essentially, society changed and created this disability. The potentially meaningful jobs for someone with natural abilities are either gone or people with an autism spectrum disorder are barred from entry because of a lack of formal education. 

Unfortunately, the ICF (International Classification of Functioning, Disability and Health) contains nothing positive in the descriptors. We can only tell people how much less they are than the standard. He asked, "how can you embrace brokeness?" I heard a term for the first time today, neurodiversity. It's a fresh lens to view people through. 

Read Bridget Murray Law's perspective on the day in this post. Bridget is ASHA's Editor-in-Chief of The ASHA Leader. (Remember she's a pro and don't compare our work please.)

My colleague, Diane Paul, PhD, CCC-SLP and ASHA's Director of Clinical Issues in Speech-Language-Pathology, introduced John Elder Robison to us this morning with these words. 

In the book, Look Me in the Eye, we meet John Elder Robison, a man with an intriguing array of characteristics. Diagnosed at age 40 with Asperger's Syndrome, a form of autism spectrum disorder, Mr. Robison describes himself as having
  • Exceptionally detailed memory
  • Difficulty engaging in conversation
  • Affinity for machines
  • Strong logicality and directness
  • Ability to focus, learn fast, and explain complex problems
  • Good story telling abilities
We also learn about some intriguing experiences. In his younger days, Mr. Robison went to prison with members of the band, Fat. He conducted elaborate pranks. Mr. Robison worked as an engineer for KISS and Pink Floyd’s sound company, and worked on some of the original electronic games at Milton Bradley. Later on he founded J E Robison Service—a restorer of Land Rover, Rolls Royce, and Mercedes motorcars. He’s also a photographer, particularly of musicians.

Currently, Mr. Robison is the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, VA. He is an active participant in the ongoing discussion of ethical and legal issues relating to autism intervention. He is particularly interested in improving quality of life for people and families living with autism today. He writes that “There’s no cure, nor is there a need for one.” 
He’s been a member of the Interagency Autism Coordinating Committee (US Department of Health and Human Services) and serves on other government and private boards. He’s co-founder of a high school program for teens with developmental challenges in Springfield, MA. He was consultant to a Department of Education grant training speech-language pathologists in the area of autism and using technologies to facilitate learning.
Mr. Robison’s books Look Me in the Eye, Be Different, and Raising Cubby are widely read accounts of life with autism, which have been translated into more than 15 languages. His newest book—Switched On—will be published in March 2016. Mr. Robison also has authored or contributed to more than 100 autism-related articles.  
In Look Me in the Eye, Mr. Robison reveals a habit of renaming people. Philosopher Susanne Langer, said that, “The notion of giving something a name is the vastest generative idea that was every conceived.” Mr. Robison applied this notion throughout his life—giving different names to people. The name I use for our speaker today, with honor, John Elder Robison.

A special thanks to Terry Harris. Terry worked hard to negotiate the arrangement for Mr. Robison to join us today. It's good to be reminded why we are all here. 

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