Susan's Blog

Saturday, June 25, 2011

Nothing About Us Without Us

I just got back from a focus group run the dynamic and talented Lydia Brown of  the Boston Chapter of the ASAN, Autistic Self-Advocacy Network.  ASAN is working with the Arc of the US, advising the Arc on its new Autism Now venture.  Autism Now is a project that is aimed at improving the lives of those with autism across the country.  I’m on the advisory board of Autism Now but until today I wasn’t as sure about what the project is.  Now I know.

Ari Ne’eman, the founder of ASAN and the young man appointed to President Obama’s Council on Disability, gave the keynote (which I missed because I was at Nat’s prom).  I sat in a room of about 25 people, 22 of whom had autism in varying degrees, for the purpose of drafting points for the core values of Autism Now.  Needless to say, my world has turned upside down.  I, a neurotypical person, was far outnumbered and boy was I aware of it.  I sat still, afraid to distract people in any way from expressing themselves.  I tried to listen more than speak.  I did make a couple of contributions (we were hammering out a mission statement and goals for the Autism Now project, from the perspective of folks with autism (Nothing About Us Without Us is the motto).

One person at my table gave me some great ideas for communicating with Nat.  He told me that I could make a booklet of Nat’s favorite Disney people and have the story be about how one of them had to call 911.  This was in response to my plaint that I don’t think Nat would know to call 911 in an emergency.  I don’t know if this would work exactly with Nat right now but what I loved was the creativity and willingness on this young man’s part to help me.  Occasionally he would turn away and flap, and collect his thoughts.  Many in the room did this, in fact.  This moved me almost to tears because it is like what Nat does, and it proved to me that there is indeed a Spectrum, and that these people who could speak (my language) could give me a clue into some of Nat’s struggles.  I loved the way every single person I spoke to asked my why Nat wasn’t there.  He should have been.  Why not?  It made me think again about how I do not always presume competence, but truly we all should.  Just because Nat isn’t getting something now does not mean he doesn’t get it on some level.  My neighbor at the table said “You should just keep asking him, and eventually he will answer you.”

This is very wise, because you can interpret it in several ways.  You can think that perhaps with repetition in the moment, Nat will able to formulate the words.  Or you can think that the repetition over the years will show Nat that you care, that this is important to you.  All of them were testaments to how atypical is atypical development.  The stories about not talking, not crawling, not eating — !  All the kinds of difficulties we run into with our Spectrum kids, to hear about how it felt to be on the other end, the actual one who was not talking, crawling, eating.  It just blew my mind.

The kinds of goals the groups came up with were:  1) More training needed around the country, including First Responders, employers, general public; 2) More flexibility in Adult Services, so that the money follows the client (guess who contributed that one!); 3) More access to communication supports, facilitative communication and technology; 4) More public education about the fact that Silence is Not Stupidity, that non-verbal people are not trying to be mean or rude and are not unintelligent; 5) Autism is a disability and a difference (in other words, autistics are also a political group who want to be treated fairly and respectfully, disability issues/therapies/cures aside).

In between each group’s presentation, I noticed everyone around me waving their hands in the air.  I was the only one who thought to clap.  Finally I asked, “what is that?”  and they told me, it is a widely-known autism thing called, “Flap, don’t clap.”  Clapping, of course, can be terrible for those with sensory issues.

Folks, there truly is a Spectrum.  There is no point in our arguing among ourselves that this one doesn’t really have autism and that one is a fraud and you don’t know how bad it can be and so on.  Let’s not play the whose kid is worse game.  Let’s not play whose kid can pass for normal.  Let’s just focus on what needs to be done:  education of the public, and education/training for those with autism.

Mostly what I brought away from this focus group was the overwhelming feeling of pride in people.  I left in a bittersweet mood, sad for how much people who are different and disabled have to struggle.  Why do some have so much and others have so much trouble?  But I also felt happy to be a member of the human race, actually, because only we have the remarkable ability to compensate for our deficits and then to reach out and help others.  And to speak to those in power with courage and patience about how we need to widen our capacity to care even more.  I applaud ASAN for their efforts.  Er, I mean, I flap for ASAN’s wonderful work.


I love the Flap concept!
In our family we do a little of both.In fact my son Jeff now almost eighteen loves to bang and clap loudly at night despite his sensory sensitivity.Which goes to prove the saying “If you’ve met one autistic person,then you’ve met ONE autistic person.”

— added by margalit francus on Saturday, June 25, 2011 at 8:53 pm

Great post, Susan!

I have kids at both ends of the spectrum and often my oldest has been able to explain behaviors in my younger kids that he has too, or that he has had in the past. It helps me tremendously to have that perspective, both practically and emotionally.

I wish we all had more opportunities like the one you had today. Perhaps some of the ASAN group members could start a consulting business– we all get so much “expert” advice, but this is the kind that I would actually be interested to hear 🙂

— added by Anjanette on Saturday, June 25, 2011 at 10:09 pm

Very interesting. There is always more inside a person than anyone can see. The advent of technology is amazing, but the frustration is how difficult it is to get it to those who need it the most. We have 4 individuals at our Day Hab who have iPads, and 1 with a dynavox. The iPads are by far the most user friendly and they are devices that so many people in the “typical” population have. They are easy and there are so many communication and learning apps out there that are (mostly) affordable. Picture based communication that can be augmented with by “type to talk” for those who are fluent keyboarders, apps that work on articulation in a fun way, just so much. It’s all I can do not to buy one for myself just to learn more. I’m sure that soon, I’ll be able to justify it;) The iPod touch and iPhone are also very very good, but tougher for people with fine motor difficulties. These are easy to use in public, so that everyone can order meals for themselves in their own way.
I have learned so much listening to Temple Grandin talk about her life and also how much her family helped her. Her mother pushed her to excel and look where she is and how much she has accomplished!
A mom of one of my favorite guys sends him a fax or an email every week to tell him what they will be doing on the weekend and I just love it when I walk into his group and he looks up and says “Hi, fax?” I always say “I’m not a fax!” and he cracks up and says “Hi, Mi (his name for me)….Fax?”. I’ll read up on this group Susan, it sounds amazing.

— added by Michele on Sunday, June 26, 2011 at 8:02 am

Susan, you are an inspiration…thank you for educating not only the general public, but autism caregivers as well. I learn so much from your posts. We all need to be as productive as you are in helping pave the way for all our kid’s futures.

— added by Candy on Sunday, June 26, 2011 at 10:33 am

That must have been so fascinating.

— added by Alice on Sunday, June 26, 2011 at 9:40 pm

She shoots, she scores!!!! Nice one Susan. Lisa

— added by lisa on Tuesday, June 28, 2011 at 3:03 pm

Susan, I have just started reading your blog via Motherlode in the NYT. My 16yr old has autism and your thoughts are so similar to my own albeit more articulate. Thank you for sharing!

— added by Linda on Wednesday, June 29, 2011 at 1:43 pm

Sounds like you learned a lot and took away some heavy and powerful feelings and ideas. Great!!

— added by Daniel on Wednesday, June 29, 2011 at 10:36 pm

If you enjoyed that, you should come to Autreat! It’s a week of being surrounded by close to a hundred Autistic people of all ages and abilities.
And of course, bring your son!

— added by Katie on Friday, July 1, 2011 at 2:28 pm

We are very glad you were able to come — and we wish Nat had come with you. I won’t forget to pass along our final recommendations from the Boston focus group once we have compiled them. We’re in the process of finalizing the recommendations from the smaller groups now.

As an aside, Nat would be welcome at any of our regular monthly meetings.

(Katie: I hope to be able to come to Autreat, but we will see if that is possible this year.)

— added by Lydia Brown on Friday, July 1, 2011 at 4:53 pm

Susan: Thanks for the words of wisdom. I have a son with Asperger’s and he is a total joy and very bright………………..tricia

— added by Tricia Kinghorn on Monday, July 4, 2011 at 1:09 pm

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