One of the highlights of the 2015 International Meeting for Autism Research (IMFAR), for me, was being invited to speak on the panel for the ASDtech SIG (Special Interest Group). I've created a Storify compilation of the panel's highlights, but was also given the chance to opine on how tech can best benefit autistic people like (and unlike) my son. So I did, as you might imagine.
Sue Fletcher-Watson of Edinburgh University organized the panel and moderated the
discussion. My co-panelists were Ofer
Golan of Bar-Ilan University and The Transporters;
Dan Smith, President of Autism Speaks's DELSIA, (Delivering Scientific Innovation for
Autism); and
Oliver Wendt of Purdue University and SPEAK MODalities LLC.
I’m senior editor at Thinking Person’s Guide to Autism, which is a
website,
book, and
information-sharing community of autistic people, professionals, and parents. I’m also the parent of a 14 year old mostly non-speaking son. He’s very awesome. If you’re interested in iPad technology you might know him, he was in a lot of the early
videos [at 13:45] and
articles about iPads and autism.
My background is as a software producer, professionally, for both Electronic Arts and The Learning Company. I’ve been using that expertise to give iPad workshops all over the world about how iPads can benefit autistic people, and I help maintain a
recommended apps and resources spreadsheet that has been shared a
lot.
But one of the most important things I try to do as part of Thinking Person’s Guide to Autism is, in our
Facebook community — which has over 130,000 people and I highly recommend you join — is hear directly from families, from professionals, and specifically from autistic people themselves as to
what is it that they want in their lives, what will help them.
So if you’re talking about dissemination, and making connections: we have a fairly global audience, and community. And that is a really good way to actually build those vectors.
What we mainly hear from our autistic community members is that they need things to help them
now. I don’t know how many of you are familiar with the wearable technologies research of
Matthew Goodwin, or of W. Samson Cheung at the University of Kentucky and his
LittleHelper software for Google Glass — but these are technologies that are going in the right direction, which is that they have the potential to help autistic people be better autistic people, instead of trying to normalize them.
It’s really important for autistic people to learn to cope with a world that is generally not set up for them, and not friendly to them — but we should not be doing that by trying to force them to be
non-autistic. We should be helping them learn, and cope, and adapt. So you can look at Mr. Cheung’s Google Glass and realize that its ability to help people identify others’ facial expressions and moderate voice volume are actually things that could potentially help some autistic people in situations like job interviews. These are things that can help with social function and adaptation -- in ways that benefit autistic people themselves, and not just the people they're socializing with.
 |
Trying out Google Glass with Sen-ching Samson Chung
from the University of Kentucky.
[Image: Asian man with short black & silver hair, & glasses
next to Caucasian woman with ear-length red hair,
wearing Google Glass glasses*.] |
And I talked with Mr. Cheung about the idea of not forcing eye contact, about learning to look at eyebrows or noses instead — because as you may or may not know, for many autistic people
eye contact is painful. It’s an aversive. And they can either give you eye contact, or they can function, but they can’t do both.
What I also see is more autistic people wanting help with
sensory issues and being overwhelmed by sensory stimuli, because for so many people, just being in this room — with the bright lights, and the echoey amplified sound, and the crowd — could
use up all the spoons they had for the day (if you’re familiar with that analogy).
I don’t know if you’re familiar with
the work of Phoebe Caldwell, who is a UK sensory issue experts. But she is an advocate of simple tech making huge differences, such as the kind of noise-canceling headphones that helicopters pilots wear, which screen out background noise yet still allow for conversation — again, just for functioning, because for many autistic people sensory issues are actually a huge impediment to learning, and if you don’t actually screen for sensory issues using
low tech, in many cases, then
autistic people are going to be disabled not because of their autism but because of the environment that they’re in.
Personally, I’d like to see more work on tech for communication, and communication apps. And not just to encourage speaking, but in terms of easier ways to evaluate the communication potential of autistic people. To use my teenage son as an example: He has lots of great scripts,as well as some spontaneous words. So we were told — for years! and by one of the best speech pathologists in our area! — that he didn’t
need AAC [augmentative and alternative communication options] because he could speak. And now we know that that’s actually not true, that a lot of autistic people have apraxia, processing issues, and motor issues, which means
they can actually communicate better through non-speaking means. But the people who have some words, or
can talk, are often overlooked.
I’d like to see more available apps, not just in terms of the kind of learning and adaptive tech some people on this panel and in this room are doing, but in terms of making *screenings* more available. I’d also like to see more recognition that speaking is not the most efficient means of communication for many autistic people.
My final thoughts on forward-thinking goals and dissemination for ASDtech:
- Help, don’t try to normalize autistic people. Keep the humanity of autistic people in the front of your mind at all times. They are people, not projects.
- Implement good design -- there is so much good tech content stymied by bad design!. This can also ease localization into other languages and cultures.
- In many countries and regions (e.g. Accra, Ghana) there is often no or little wifi, or even available devices. Tech has to work under those conditions.
----
**
Side note: I have asked after useful but assumption-free approaches to describing people of different races and appearances for screen readers. Some people prefer purely objective descriptions, e.g., would describe me as having light beige skin and Mr. Cheung as having dark beige skin -- and leave it at that. Other folks feel it's unhelpful to leave out race. I have not yet come across a fully persuasive argument either way, and am interested in hearing opinions on this matter.
