While at the Spring 2010 Conference of the Greater Phoenix Chapter of the Autism society of America (GPCASA) I was approached by that chapter's president. Doctor James Adams, with an idea. He thought it would be great if his chapter and mine could get together to present an Autreat like event somewhere in northern Arizona. I liked the idea and said that I would take this idea back home to my chapter, Northern Arizona , for consideration. Let me note right here that I am the president this year of the Northern Arizona chapter ASA (NAZASA), and autistic myself. So I am thinking to take part in organizing this event although I have never organized a pajama party!
And so I did bring this idea back to my chapter where everyone seemed to think it a generally good thing to do. The real beginning occurred when Susan Marks spoke with Merilee from Camp Civitan at an autism related event. Quickly it seemed to both of them and to me that Camp Civitan would be the best place to hold the retreat. I liked this because Camp Civitan is one of my favourite places in the world. They provide a place away from the usual for people of different sorts of differently abeled people of all ages, and had been a client of mine since I began my architectural practice several years ago. Why I had not considered Civitan, I do not know, but some times I can be a doufas!
Soon preparations were underway. There was much to do and little time to do it in. We would have to book the three nights desired before Civitan's official season would start. In that time we had to organize with GPC and Civitan, get some sort of internet flyer available to relevent persons, and get attendees signed up. In that I live about four miles south of Civitan in Williams I was liaison between NAZASA and Civitan.
As Susan and I worked along with another NAZASA member: Mary Lane - Kelso, we came up with several base ideas. The event should be free to attendees. It should be fairly small the first year to keep it simple; we determined to have seven spots available. We thought that the first year ought to be kept to adults who are self reliant to a large degree, again to keep the first year simple. The first year would have no presentations, just time together. Se decided that each person would be responsible for his own food as manay of us have specific requirements, and again we thought simplicity of organizing would be a good idea. We called the event Autism in the Pines and set a date for it and got to work.
Now, I am fifty six years of age and while autistic to my core, I have in my years developed many tactics to deal with my autism. I have work-arounds galore. These may not be natural to me, but after so many years adapting to myself and to society around me, they are automatic. Still, sometimes I have a real skillet to the forehead moment: BAM! “Hey! When you wake up from the skillet, just remember that you are autistic!” “Eeeeeeeee, ahhhhhhh, whaaaaa?” I would have several of these moments due to Autism in the Pines!
One of these BAM! Moments came when I found that I had to correlate the dates set with Civitan with the dates on the web flyer. This was an important detail in that if I got them wrong, then people could show up when the camp was not actually reserved. I could not in any way visually overlay these dates and eventually troubled poor Merilee at the camp several times to confirm them. I signed papers with Civitan the part of NAZASA: BAM!
Susan contacted the Grand Canyon Railway to see if we could get free tickets to the Grand Canyon for the attendees. In that the Railway is pretty nice and Susan has a real way with words, this happened. The Railway offered us seven tickets. I picked them up. I was stressed out as I walked into the Flagstaff office to collect the tickets, another BAM! moment, but one I survived. I took this as an inspiration noting that Bearizona had just opened. Bearizona is a drive through wild animal park new to Williams at that time. They had been offering free drives to locals. Would they allow seven of us in the park for free? I found out, all on my own. BAM! But the answer was yes! Autism in the Pines was coming together!
The day that Autism in the Pines was to start was not the best for me. I practice architecture within Coconino County , where the governmental panel which inspects plans and buildings is woeful. To me the design of a building is essentially a logical exercise; attempting to include governmental illogic into such an enterprise is analogous to an attempt to incorporate into a tasty casserole cat dung. My brain hurts and I run low on energy. I had just the day before the retreat's kickoff received telephone calls of a very distressing manner from the county and was already in near meltdown - as a basal state. BAM!
I had not actually planned to fully attend the retreat. I had made an excuse in that since I live all of four miles from the camp, that I need not take up a paid space; I could come and go as I might. That was an excuse. In reality I had anxiety over the specter of spending so much time in such close proximity to so many people - people who I did not know. Susan and Mary convinced me that I had to attend in that I am president of our chapter and had to organize the event. BAM! I am so glad for their insistence.
Then the day arrived. I thought to be at Civitan by noon to welcome all who would arrive. I thought that If I showed up for such an event that I would want to be officially greeted, that I just might drive back home again if there was any uncertainty. So I packed my radio, a book, some tunes, water, and binoculars and drove to the camp. How nice to be away from my business, which has become so painful and is within my house. After a while the first to attendee arrived. Penny had come from New Mexico by way of the Phoenix area where she had been caring for her mother. She is classical autistic, nearly seventy and the strongest of us. Then a Robyn arrived, from the Phoenix area, and then two together: Stephen, who car pooled with Joey. I was surprised to find that Joey was female: a shortened name and referential to young kangaroos.
Funny, while the statistics show that within autism males outnumber females by four to one, here we outnumbered poor Stephen by exactly that ratio. This group of five would be the core of our group. We spend the evening talking and getting to know each other. This was easy. There are those who say that we auties lack a “hidden curriculum” that imparts the base talents upon which to build social skills. I feel this lack in my life all so often, but have long thought that we are so different that we may have our own code book of signals. Every time I am in an autism defined environment I feel this continuity and think this thought. Autism in the Pines was a small miracle!
The next day we rode the train to the Grand Canyon . We had a great time on the way, and probably were not very different from any other set of passengers on the train. The entertainer who played squeezebox and harmonica was a friend of mine! Such things happen in a small town.What I noticed, and noticed all the time was that we all got along with one another as though we had known each other for many years. Indeed, I considered the fish. . . That is the fish who does not discover water. I think the fish would discover water soon enough if he was thrown up onto the shore for five minutes or so! I discovered water after years on the shore by way of being in the water for three days. Sometimes being a fish is okay. We had a good time on the way to the canyon, and then broke into two groups. Joey is, as am I, severely asthmatic. Being that the canyon is at about 7,000 feet above sea level and that she is acclimatized to Phoenix ' lower elevation, she decided to take a bus tour. Her friend Stephen went along with her. I went along with Penny and Robyn on a walk out and bus back tour. Part of our tour was a walk down the Bright Angel Trail . Penny went farthest, Robyn not quite so far, and I stayed much nearer the trail head so to keep my asthma in check.
After we all wandered around the prescribed period of time, we all met at the railway station to return to Williams. The return journey was as nice as the morning's trip to the canyon. Along the way we discussed dinner. Williams has several very nice restaurants, but we constituted five special needs persons. Joey has a gluten allergy, I am a nearly vegetarian (I will eat fish: kosher only), Joey could not walk far, Penney has issues with noise and flickering lights and rotating fans. Upon arriving at the station in Williams we made for Dara Thai as we all thought it would meet all our needs, but Joey obviously had trouble with the distance and so we stopped and had dinner at another of Williams' eateries.
And we had solved a potential problem. We solved a a lot of potential problems during the three days. We had to buy supplies not brought from our homes, share various foodstuffs, mend a flickering light in a room at Civitan, find exactly the right places to eat. . . Oh we had some real problem solving to do. Know what? We solved them in fluid and determined style. At one point Joey commented upon one of our solutions: “. . .that would have taken neurotypicals fifteen minutes to solve!” She was probably right. We never had to plead a case, there were no discussions nor any polls. We simply confronted each and every spot of trouble head on and resolved it. It was almost as if, when in autistic company, we were all normal!
When we returned to the camp we found member six waiting. He had shown up late and I will not mention his name as he was using the retreat to investigate his potential autism. As the evening progressed, each of os felt no need to explain, but simply went to bed when necessary. Wonderfully demonstrative of the much vaunted ability of autistic persons to communicate non verbally; much evidence of the hallowed concept of autistic empathy too! We might have called our retreat Mythbusters, except for the copyright violation.
That evening we all spoke quietly as we had, obviously no empathy for our noise bothered companion. Ha! The myths fall! Let the walls come tumbling down! The new arrival was full of questions and we who were still awake tried to answer them fully. At one point the nature of conversation came up. Joey had been taught a conversational algorithm in which one realized that any sentence consists of two parts. Take either one, give it a twist and send it back, viola! Conversation. I mentioned that I had found that most human conversation makes no sense, and that a statement such as “How are you?” is not actually interrogatory. I said then that there are “A Statements” which open an exchange, “B Statements” which continue it, and “C Statements” to close. Between the A and the C use as many Bs as are needed.
Then we had a conversation a la mode neurotypical. It was not this: “Oh, what a beautiful sunny day it is.” “Yes it is, I really like the sun.” “I do too after such a long and cold winter.” “It was a long and cold winter, I didn't like it either.” “I felt so closed up in my house.” “Yes, a person can be in the house too much sometimes.” “I think I was in the house too much.” “Me too, but now I can get out.” “Me, too, and I am enjoying the out of doors.” “Isn't nature beautiful?” No, the “conversation” was not that, not exactly, but it was close. The “conversation” was so devoid of any real meaning that I can not recall a bit of it! I might as well try to recall an eye test! But it was a normal linguistic interchange and the people not involved in it sat and watched the words pass back and forth like a ping pong ball as Joey and I blathered on for several minutes.
Then one of us closed it without so much as a C Statement in that the close was simply a statement akin to “See how that works?” and not a real close. Hmmm. . . as I have thought about this lack of a proper C as a close I have had to realize that within the context, the colse was a C Statement after all, and it worked well as one. After a while, more of us drifted off to dorm rooms to sleep. Not me. I slept in the large cafeteria room on a couch. I had been having asthmatic attacks with much coughing and lung clearing at night (Night is far worse than day, I think due to lack of body movement.). I slept on a couch to elevate myself, and in the cafeteria so to not awaken everyone else in my room.
Soon I was fully awake. As I lay down the fluids in my lungs began to move and I was in the midst of lung clearing. Then Joey approached the now lit cafeteria with her own asthmatic issues, and Stephen - always protective of her - came along too because he has no empathy! We all laughed at myths like that using our autistic non existent humour! But we did not laugh that night. We had a coughing contest which was unfortunately won by both of us.
As we coughed we had an asthmatic conversation. There are things that a person with a specific condition will not usually burden those around him (or her!) with. This is the case with asthma. Somehow it is a relieving thing to discuss one's troubles with another person who actually understands. We spoke fairly deeply of our experiences with asthma. Poor Stephen. He sat there with his face distorted in his autistic inability to understand another's feelings, nor to empathize with those others' pains. I think he would have gladly gnawed off a few of his fingers if that would have saved Joey and I from future asthma!
Then, after some time and coughing, we all managed to sleep. The next day was Saturday; the day of Bearizona . We all awoke got ready and then took our time. There was no rush at all. We had all day. Several of us went off to Cataract Canyon which is just north of Civitan. I stayed with Joey and Stephen because I was feeling a bit weak of lung after yesterday's Grand Canyon walk and then the evening's coughing contest which I had fought hard not to lose. We had a very nice time just hanging out, we auties are well known for our love of social interactions and our skill with them. BAM! Seriously, these three days were amazing.
I mentioned at one point that I had an emotion, probably uniquely autistic, that I could not find a word for, but felt so good. As I look back I see that I had two shock initiations. There are three ways to learn anything. One can read a book. One can actually do that which one had read a book about. One might be hit in the head with that same book. My first shock initiation was upon arriving in this uniquely autistic defined society. I switched off a lot of circuits which I use to monitor myself.
Now, I did not make any attempt to “be autistic” in any stereotypical way. Nor did I do any serious acting out as a result. (Okay, at one point Stephen said to me that I had just done my “Autistic Happy Dance”. I have no idea what it was as I was not self monitoring. I am glad I did it though and greatly doubt that I do this sort of thing in usual neurotypical company!) I simply made a lesser attempt to self monitor. My goodness gosh! What a difference. I had no idea of just how much of my energy goes into such self monitoring and then into the self control needed to avoid PDA (Public Display of Autism). For three days and a bit I lived pretty much just as me. It was a great time. Then there was a second shock initiation upon my return to society as I re activated all those circuits of self consciousness.
Later, I devised a new word: “Snarfly.” This is the autistic emotion that I had felt. Snarfly is the joy of being comfortable. To many outside our tribe comfort may not seem all that wild a notion. To me, at least, this is a big concept indeed. I want to feel a lot more Snarf in my life!
Bearizona was another good experience, made even better by being among my own tribe. We all packed into Penny's Prius and drove through Bearizona slowly. The best part was at the very end where we stopped to see the bear cubs. Not only were the two cubs awesomely cute, but also the feeling of the small park at the end of the drive was calm and open and good. We stayed there a long time whilst breaking up into ad hoc groups of two or three. At one point Joey, Stephen and I were using mathematics for far more than math, we were bonding. Note that those two can run rings around me in that subject area.
After a time I had to be the person with a special need. I must eat on a fairly rigid schedule or face gut issues. Although we all wanted to stay longer, all were headed for Penny's car in seconds. We went to a local Mexican restaurant, Rosas Cantina where we made certain that the ceiling fan above our table was switched off. Stephen asked the waiter to ensure the beans had no lard, for my benefit. The meal was good, and the fellowship better. Then back to civitan for our last night together.
Soon I had a telephone call. Eric from NAZASA could make it after all! Eric, a young adult with autism had signed up but had not attended yet as he had been bitten by two hundred thousand and six mosquitoes whilst in Texas . It was those last six that had put him over the top. He had visited a local emergency room. Question was could he come at such a late date? Of course! And soon he was en route Civitan.
Eric really likes airplanes and had brought his digital video camera. He and I sat on the couch and watched many videos that he had made. I could identify the aircraft, no, I am not autistic: BAM! Most of these bam moments are good. Eric also does portraits. He is amazing, and indeed all of us were amazed by a set of drawings that he had brought, and one he was still working on. For sleeping that night he chose the same room that the previous night's short-termer had chosen, and announced that he likes to stay up late and work on his art. And so he did.
In the morning we all breakfasted and then some of us headed north on foot to Cataract Canyon . This day I walked into the canyon with Robyn while Stephen and Eric stayed up on the rim. A nice feature of Autism in the Pines was that each could do his or her thing, and yet we were all together. I am ever stronger in my belief that we are a separate sub species!
We had not mentioned that Eric ought bring a lunch as well as breakfast. Another potential trouble solved by inflexible autistic persons. We all had plenty of sandwich makings and this was out last day and we all tarried at Civitan to our official check out time of 1200 and had a nice lunch together. We auties really like togetherness! Then it was over. Time to go home.
I think all who attended consider the very first Autism in the Pines a success. I am looking forward to 2011 with no reservations about spending time among my own. We plan 2011 to be larger, perhaps fifteen sign ins, grow slowly and learn how to keep the event easy going and pleasant. Other than snarfly I have no real word to tell of my overall feelings. I sure want to have this again in my life. Thanks to GPCASA and James Adams for the inspiration and financing, thanks to NAZASA for coordination and funding, thanks to Grand Canyon Railway and Bearizona for support, and to all who attended; I cannot imagine a better bunch to be the very first attendees of what I hope to be an annual event. Thank you all for one of the best times in my life!
Here are some Photos from the Event:
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