Wednesday, March 5, 2014

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

Shannon Des Roches Rosa

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 that includes and supports autistic perspectives and needs and makes those factors primary, while still very enthusiatically supporting and educating parents and professionals. That provides families of newly diagnosed kids with several weeks' of educational classes, plus home visits. That had a large number of autistic speakers at its conference for professionals. It was a revelation.

The conference's accessibility was also impressive: the NAS provided simple live captioning service and sign language translation. There was a Quiet Room. The facility had ramps and elevators everywhere, plus the auditoriums had warning signs notifying those who entered that strobing lights might be used. And the official NAS mantra was on every banner:

Description: Black words on a white background atop a
horizontal red line, reading "Accept difference. Not indifference."

photo: Peter Vermeulen
I was there because filmmaker and autism sibling Saskia Baron kindly advised the NAS to invite me to give a presentation on iPads and Apps for Learning and Leisure. I showed up in standard conference mode: excited to be of use in sharing information that attendees would hopefully find helpful. (Autism consultant Dr. Peter Vermeulen tweeted that I told a "Very balanced story about apps for autism: presenting the advantages and opportunities as well as mentioning some caveats.") But I did ever so much more learning than I did educating.

Consider some of the NAS officials' conference opening remarks:
"The role of the is to challenge misconceptions about ." -Mark Lever on the media's "poverty of understanding"
"We need to put the child/person at the center of what we do. Proper support means happiness, independence, employment."

"The is working to capture actual numbers of people in local health authority areas. How else can people be supported?"
The media's misconceptions about "shirkers not workers" is one hurdle in the 's working towards positive representation.
I sat through Autistic-focused, autism-positive-yet-pragmatic session after session in a state of surprised delight. I live tweeted most of the presentations I saw, but as tweets are not that accessible after the fact, I storified the tweets from several presentations for archiving and sharing purposes. Hopefully these Stories will give you a sense of how fantastic the presenters and their talks were. (Any errors or omissions are my own.)

Autism researcher and anthropologist Dr. Roy Richard Grinker's presentation The Cultural Origins and Futures of Autism Spectrum Disorders. Excerpt:
"If something is cultural, it's not fixed. We made it. That means we can change it, e.g., negative attitudes towards ."
Autism educator and consultant Dr. Stephen Tyler's presentation Severe Challenging Behaviour: Impact, Perceptions and Support. Excerpt:
educational consultants should be called in to observe situations that work as well as situations that don't.
Autistic Advocate Ros Blackburn's presentation Logically Illogical: Autism Insight and Information. (For those unfamiliar with Ros, she helped Sigourney Weaver shape her autistic character in the movie Snow Cake.) Excerpt:
"If any of you can identify a behavior that is unique to autism I'd love to hear about it." -Ros Blackburn
Autism educator Phoebe Caldwell DSc.'s presentation Sensory Issues in Children and Adults With Autism: Excerpt:
"It's become very clear to me recently that we cannot tell how bright a child is until we look at sensory deficits." .
Autistic advocate Olley Edward's presentation Why Aren't Normal People Normal. Olley has been denied an autism diagnosis. This injustice informs her advocacy work. Excerpt:
.@OlleyEdwards can make fantastic eye contact. She is an accomplished actor. She is also .
Autistic Artist David Braunsberg & Autism Consultant Dr. Peter Vermeulen. Presentation and Interview: Focusing on the Positives: Measuring Outcomes for Autistic People From a Different Perspective. Excerpt:
"We shouldn't want people to be less autistic. We should want them to be autistic and happy. -@Peter_Autisme "
Please feel free to leave comments or questions (or to tell me what a Pollyanna I'm being). But even if I'm mistaken about UK attitudes towards autism in general, I know what I saw at the conference itself: autistic people, and people who accepted autistic people for who they are, and who were working to improve autistic people's quality of life. I hope American autism conference organizers are reading this post, and taking extensive notes, because American autistics, families, and professionals deserve a conference like the NAS Professional 2014.