Empower Autism

Archive for April, 2010

Autism News Update #5

I only have a few autism news updates this time around. Someone email me if I’m missing something big (that doesn’t have to do with Jenny McCarthy).

  • The federal government is looking for autism research to fund, based on recommendations by the IACC’s 2009 Strategic plan . The proposal includes potential funding for research on adult services, safety of botanical/pharmaceutical interventions, and environmental and genetic epidemiology.Read the proposal…
  • I usually refrain from endorsing products, and I haven’t tried this one, so I can’t speak to it’s usefulness, or usability. However, I think it’s really cool, theoretically. And about time, too! Proloquo2Go™is a new communication product from AssistiveWare, that brings visual structuring, and communication support to the iphone. Cost: $189 for the software & application (iphone not included). For reference, a Dynavox is $6,000 or more.
  • proloquo2go2

    TIME magazine is running a photo essay by Mike Belleme about the autism program at Dragonfly Forest in Philly! I had the privilege of creating this program, and I’m SO proud of it. There is a hilarious picture of me getting mobbed by a bunch of campers on there too. It’s funny what gets immortalized huh?

    Check out the photo story!

    Mike is a really talented photographer–and he freelances–so you better hire him quick, before he hits the big time!

    When ‘Helping’ Doesn’t Help

    “Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
    “Yeah”, is the response.
    “Ok, it’s in the car. Do you want me to get it for you?”

    …and this is when I start grinding my teeth. There are a lot of wonderful things about 1:1 services, but an over-dependence on constantly having a personal adult is not one of them. I am too-often reminded of governesses and servants when I watch these failed attempts at professional relationships unfold. Adults who are supposed to be teaching, guiding, and demonstrating independence end up descending into the role of carrier-of-stuff, fetcher-of-forgotten objects, and fall-guy for bad tempers.

    Doing too much
    To be fair, I’ve totally found myself in this all-purpose, waitress type of role in several of my early direct care jobs. Most places don’t train you how to stay professional, and to empower individuals in 100 small ways each day, instead of taking over.

    Saying ‘YOU do it’, is empowering for both sides of a relationship. Should the direct care staff in the example above notice that a kid left his DS behind? Yes. Should said staff be able to predict later trauma when the missing DS is discovered. Yes. Does that mean the direct care staff should trot off to produce the thing? Definitely not.

    Instead, consider the following:
    “Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
    “Yeah”, is the response.
    “Cool. Go get it.”

    In this scenario, the kid is encouraged for knowing what he wants, and empowered to do something about it.
    If this conversation is (later) followed up with the implementation of some system for remembering items, then THAT is something I’m totally willing to pay tax dollars for. I’m not as interested in paying for endless babysitting.

    I have seen many, many healthy direct care scenario’s (especially at the Autism Society of NC), with professional staff, and good supervision, and I believe that having really good one-on-one support can help people learn to do stuff for themselves…but only when we refrain from doing stuff for them.