A few weeks ago, KindTree - Autism Rocks published a news item forwarded from "Asperger Experts". These young men have started a company marketing a "New" approach to dealing with people on the autism spectrum. It sounded pretty good to me, but I forwarded it to our own local expert David Olson, facilitator of KindTree - Autism Rocks "Self Advocacy" discussion group. He in turn shared it with a more active than this one discussion group. Below are few excerpts from that discussion, and the whole thread is here.

What do you think?

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from one fellow:
I did not watch all of the first video nor any others at all, but I think I got the jist. I think this video has a place for some very young, perhaps adolescent autistics. So many are now raised as "DISABLED" that learned helplessness is a major issue. These basic social niceties escape them. This guy may have been such and found the path out. More power to him and anyone he helps! Autonomous Autistics Arise!!

I often find that special educators "LOVE" their kids - as long as the kids stay in the "DISABLED" box. If they mature, make something of themselves, and crawl out of the "DISABLED" box into the "MAINSTREAM" box, it freaks people out. These are the people I work with.

I work on two teams of 4 therapists (and only I swing between the two) to cover all of the medically fragile babies birth to 3-years in the 5th largest county in the US and an additional smaller county. I have to help these two busy teams learn how to work with me and me with them* in addition to getting our job done. 

The things that seem to be working for me are:
1. One of the team members quickly became my ally. She recognized I was autistic (most people just assume I am an irritatingly passionate oddball). Since then two more team members have joined "team Janet". This is an absolute 1st for me**

2. I bring my little-professor, powerful narrow-interest-level-knowledge and expertise to the teams - a valuable commodity. Once I get the gestalt of something, the details I can remember astound them. The autistic brain is a thing of beauty!

3. My allies help me interpret interpersonal interactions and help the others not yet on "Team Janet" understand that I mean well, am actually kind and helpful, don't hang on to negative emotions, and have high value despite my unexpected "packaging". 

4. People just need to give me overt feedback without emotional overoad. 

This may sound like a burden, but it really amounts to a few quiet words in passing here and there. 

Thoughts on Person-First Phrasing

“Person with autism.” We've all been taught that this is the politically correct terminology. The stated reason? It's important to establish that you're talking about a person before anything else. That sounds nice and accepting, doesn't it?

The big problem with this rule is that I don't remember “people with autism” being consulted about it. It is reasonable to assume that a group of people might have an opinion on how they are to be referred to. I'd like to state some of my opinions on it.

Before I continue, I want to stress that what I'm saying here is my opinion and nothing more. I've talked to several autistic people that mostly agree with me, and I've also talked to some who don't. I don't mean to present this as a representative opinion of the entire autistic community. Only as a way to start a discussion.

I'll go ahead and get the obvious part out of the way first. The label can, and probably should, be left out unless it's relevant. Similarly, you wouldn't refer to a person as neuronormal if it isn't relevant.

Now, the real question is when the label is relevant, do you say “autistic” or “person with autism?” The honest truth is that either one can be acceptable. The most important thing is that you speak with respect to the people you're talking about, and that they are not seen as being anything less than full human beings. If you can do that, I don't really care which one you use.

If you've been reading from the beginning, you most likely would have the impression that I have something against the phrase “person with autism.” Here's why. As I said before, the reason given is to establish that you're talking about a person. I'm not exactly comforted by the thought that some people have to remind themselves that I'm a person when they talk about me. I feel that it's a sign of a deeper problem that a simple change in terminology is unlikely to change.

The other reason I'm not fond of person-first phrasing is that it tends to reinforce the idea that autism is akin to a disease. That there is a normal person trapped inside a shell of autism. This is simply not the case. No matter how functional a person becomes, the autism will always be there.

My preference is “autistic.” When something runs as deep as how your brain is wired, it's hard to separate it from the person. Autism isn't simply a set of behaviors. It affects how we think, how we process information, and even how we sense the world around us. It's a part of who we are, and that will never change.

I do understand that there are people who disagree with me because they don't want to be defined by their autism. I completely respect that, and, in fact, I don't want to be defined by it either. However, I don't feel that the answer to this is to go to person-first phrasing. I think the answer is to simply bring it up when it's relevant and not mention it when it isn't.

In conclusion, I believe the most important thing is to see autistic people as people. That should not require stating it before the label, in much the same way that you don't talk about people with homosexuality or people with blackness. Person-first phrasing does not always promote person-first thinking.

I am posting this article, written by David Olson, for the KindTree newsletter "Reaching Out - Reaching In". You can access the complete newsletter here: http://www.kindtree.org/html/newsletter.html  I think it's a great article...

Autism Acceptance Month by David Olson

April has been celebrated as Autism Awareness Month since the 1970’s. This, among other things, has made autism into a household word, and has brought into being much research and supports for those who experience autism. Many people are recognized as autistic who may not have even been considered for a diagnosis prior to this increased awareness. It has even caused autistic people to come together and find our own voice.

However, I believe that awareness only goes so far. It does little to ensure that the research being done is helpful to autistic people that currently need supports. It also does not ensure that the supports and therapies offered are actually helpful, nor that they do not cause harm to those they are intended to help. Awareness does nothing to reduce the stigma that comes along with autism, and it does little to make the voice of the autistic community heard.

In 2011, the Autistic Self-Advocacy Network (ASAN) proposed simply changing one word to address these shortcomings. Change awareness to acceptance.

The core principle of acceptance, of course, is to reduce stigma. We in the neurodiversity movement wish for all autistic people to be able to celebrate themselves as the unique individuals they are. Only through acceptance and comfort with ourselves can we strive to achieve our full potential.

I believe acceptance has much farther reaching potential than just that, though. By listening to the wants and needs of the autistic community, research can be directed toward more useful goals. Supports and treatments can be improved with greater insight into the autistic mind. Communication between autistic adults and parent communities can and does promote a greater understanding of autistic children, as well as creating more effective parenting methods.

Please join me this April in celebrating Autism Acceptance Month. If you are autistic and willing to talk about it, talk to people about autism. If you are interested in autism, talk to an autistic person, and don't be afraid to ask as many questions as come to mind.

Share this wherever you can. Together, we can better understand each other and make a better world for us all.

Greetings,

Welcome to the New Year. It is my hope that 2014 will find more and more folks posting, commenting, and following this KindTree - Autism Rocks Blog.

You r personal experiences, your experiences with KindTree - Autism Rocks, your recommendations for books, devices, services and more are all welcome here.

Got any?

Tim

The Rest is Silence / Novel writing

I've been working on a novel for the past 6 months. Although I have attempted novel writing in the past, I vowed to get this one finished. I completed the 2nd draft on Dec. 24 at 5 pm. Like a  marathon viewing of the series "Breaking Bad" or the entire "Lord of the Rings , by the end I was exhausted and overwhelmed. I hit the mental off button and like that everything stopped. My mind was a blank, the characters, the internal editor, the grammar police were silent and it felt weird.

To celebrate I present the opening scene from "The Mighty One, Before,During and After".

Everyone has a moment in their life that sets fate into motion. My eight year old curiosity got the better of me and I had to find out what I was getting for Christmas in 1966. My parents were kind but set boundaries and one  of them meant staying out of their bedroom. They treated my room with the same respect and always knocked before entering.

Mother left to go grocery shopping which gave me the chance to go upstairs. My room occupied the front of the second floor, with theirs at the back. I knew Dad kept presents under the bed and I carefully lifted up the comforter when I heard the front door open and shut.

Oh no, if she comes up the stairs I'm done for. Panicking, I did the obvious and stupid thing; I stepped across the bed, opened the window, and climbed out on the rear porch roof. It had snowed the night before. Dad shoveled a path from the back door to the detached garage leaving a large pile of snow close by. I tiptoed to the edge of the roof, aimed for the mound and jumped. Instead of hurtling fifteen feet to the ground, I drifted like a leaf from a tree. 

I laid in the snow in a mild state of shock. I tried to absorb what just happened when the cold snow on my backside reminded me Mother expected me to be in the house and hurried up. I brushed snow from my clothes and noticed our next door neighbor Mr. Hoover standing in his driveway with a shovel in his hands and a gaping mouth. I gave him a nervous wave and headed thru the back door. I almost ran into Mom in the kitchen unloading groceries.

"Neil, what are you doing outside without a coat?" she asked with typical concern. I mumbled something but Mother didn't notice anything unusual. 

Despite my ordinary appearance I have exceptional strength, fast reflexes and oh yes, I can fly.I mean like Superman, just push off the ground and I''m airborne. I realized no one else could after I got a the weird glance from a friend when I mentioned it. I had to keep it to myself but the burden grew heavier, even after the careful realization that everyone had a secret to hide.

At a young age I didn't fly so much as make little hops, like reaching for an apple high in a tree or something on the top shelf at Dad's hardware store. Falling like a leaf was one thing. Flying took more effort to accomplish. Not as easy as it sounds since Galesburg Illinois is as flat as Kansas. There  aren't a lot of places to hide. By adolescence I would sneaking off at night or near dawn for some quick flying out in the country.

I became aware of other unusual skills as I went about the business of childhood. I used to take a red blanket off the clothes line and pin it to my t-shirt. Like many boys, I would run around the yard imitating the world's most famous super hero. Our dog Blinkers was energetic but not the brightest pet. He would chase me around trying to get his  blanket back until exhausted. I got too carried away with this game one time and in the excitement he ran out into the street and the path of an oncoming car. Seeing the inevitable tragedy about to happen, I ate up the distance, grabbed the dog and dodged the car before the driver slammed on his brakes.

My joy at saving him was dulled because I had no one to tell. The disappointment followed me for days until Mother noticed my unusual crankiness. 

I don't like keeping this to myself, I wanted to say but just shook my head, it was nothing.

We don't feel too little, we feel too much

Contrary to common belief autistics are not cold, unfeeling people rather the opposite. We feel too much and shut down when overloaded. Don't believe me, than Read on.

You're going to camp whether you like it or not.

By Alisa McLaughlin

I planned to be at the  annual Kindtree Autism Camp early to beat the rush and rehearse for a role in a play one of the Volunteers wrote . I  say planned because my plans didn't quite work out that way. Thursday morning my ride never appeared leaving me frantic, confused, angry and so stressed I thought, the hell with it. Once again fate was in charge.I woke Friday and immediately got a call from Nell, one of the directors of the camp.

"We need you out here." were the magic words she said. I got a ride from another volunteer Julie, and we arrive mid afternoon. Unfortunately I missed a shift of work and a rehearsal so I was way behind the schedule. No problem, no worries I'm here that's what counts.

The  main work on Saturday was the technical rehearsal for the play. The final draft of the play was delivered to me when I arrive so we're all reading from the script here and at the show. In a homage to Dr. Who, Frankie has written a play that could easily pass for an actual episode. Pretty good since he's never done this before. He plays The Doctor but is preoccupied with directing. Tim plays a befuddled Professor and offers ideas on direction. Logan-playing the villain, proves to be very professional, picks up on his stage business, gets into his part and has most of his part memorized which impresses me. A high energy pre teen is cast for a small role and does the news commentator on a pre recorded video. He's all over the place and I wonder if he is up to the discipline of acting.  I'm stressing about the complicated blocking.

Panels of cardboard are painted brown with yellow circles like the interior of the TARDIS.  One of the panels is discarded because of space and Logan decides it looks like an easy version the game twister "Left leg on yellow, right leg on yellow, left hand on yellow, left hand on yellow" Yeah, that's it I laugh. The prop control panel could easily have come from the early days of the BBC show when they had no budget. We all love it's thrown together appeal.

I'm tired from rehearsal and go to my tent for a ten minute nap that turns into a 30 minute nap. I miss out of the many activities scheduled but camping for me is about resting not doing. So I  enjoy throwing a frisbee around the open field with campers in the warn sun. I wander over in time to see Mary -Minn and company packing up after the watercolor class I missed. They speak in a fake French accent for some strange reason  while they clean up. "ah  ze colors are magnifique." "Zees is ze best water color ever. " I didn't miss the fun after all.

The  play is presented at the end of the talent show Saturday night and is wildly enjoyed despite the imperfect staging and my stepping on Frankie's lines-twice. The crowd loves it and that's all the matters. Afterwards he and Ryan do their impression of Frank Sinatra and Dean Martin. I went to bed.

Sunday I rose to late for the eggs so I have bacon and fruit for breakfast. I take a long walk to the end of the camp  and back. Big mistake, even though it was quite lovely and quiet. I then spend over two hours helping in the kitchen which I rather like even though it's tiring work. I have spent the last month sitting on my butt while writing a novel so I get all the exercise I missed done in one weekend. It's raining and I'm exhausted when Julie and I head back to Eugene. I'm so tired I swear I'm not going to do it again next year. 

Well, there is talk of a sequel to the play.