Taking the "local" to Toronto in mukluks
As a Northerner, living several kilometers away from the nearest "Northern Ontario Under serviced Town" in the bush, on the shores of a mystical lake, who rarely leaves the comfort of the bush, lake, bears, beavers, muskrat, porcupines, 2 kids, 2 dogs and small rodents that share life with.... a trip to Toronto is quite an adventure.
"Express" to Toronto the sign on the bus beside the one labeled "local" to Toronto read.
This, the 1st of many choices on this trip to the Geneva Center’s International Symposium on Autism 2002.
Decided on the "local" fearing the scenery would go by too fast on the express, and also because am a local person... not one equipped well for rapid transit, or long distance travelling.
This seemed to be a good choice. Throughout the trip, there were only 5 other people on this bus, and wondered how Greyhound was able to make a profit.
Along the way discovered little towns where even locals such as mineself couldn’t get lost. The street names were quite self-explanatory, such as "medical building rd.", or the "water treatment St.".
These towns were much like the small Northern Ontario town many Km’s away from mine small place in the bush... towns where children calmly stood on the roadways, elders sat in chairs in front of their porches, and dogs wandered by the butcher shop perhaps wishing for a treat.
There were signs on this trip of the past hot summer. The trees were starved and dehydrated, pale and lacking stamina to bring forth their palette of autumn leaves. The lakes and streams clearly were shallow, and there remained a question as to what the following summer will bring unless the winter blankets the terrain with lots of refreshing snow.
Somehow the summer past brought, to our land of beauty deep, drought that lingers on as the frost descends.
It became quite clear where the money ends in our province. As soon as we passed Parry Sound (one of the ruling government’s ridings) the narrow, hilly, windy highway divided, and was 4 wide lanes all the way to Toronto. The trip was soothing, and somewhat amazed this Northerner at seeing so many large stores, malls, parking lots, and generally signs of human impact upon the terrain. So much that at times it was quite impossible to comprehend where all the people came from who used these roads, malls, and facilities.
As the bus entered Toronto, there was a sea of colourful lights on streets, cars, homes, buildings, malls, road signs and advertisement billboards. This was a time to be grateful for having decided upon wearing the sunglasses on the bus. The lights were bombarding the sensory system with a serious load.
The realization that this was just the beginning of a trip, which would push the coping skills to the limits, was setting in.
Bringing some thought for a need to make some planning around getting enough opportunities for "down time".
At the first night in the hotel it became evident just how fortunate have been. Here was, sitting on a large comfortable bed, in a warm quiet room, with the largest city in Canada outside. This room was now home. It was the cocoon, which held the safety, which held sleep and the solutions to thirst and hunger. What else is needed?
It was all there, perfectly laid out. The towels were perfectly lined up, beside the face cloths. The pillows were lined up to match the pattern on the headboard, and the corners of the sheets were correctly patterned beside the covers. This was quite amazingly set up for ASD residents! The TV remote was well lined up with the edge of the television, and the carpet had a short loose pattern, which soothingly repeated itself every 4 feet. Would minna ever want to leave this wondrous environment, became a challenge encountered the following morning.
As time went on, the conference commenced, people were met and two were very helpful and supportive towards minna in ways that without which, surely would have been lost in a world of sensory crisis, pure stimming on lights seen through hotel windows, patterned carpets on halls that seemed to never end, or the shocking scream of the subway system.
Yet throughout the almost 4 days spent in Toronto, it was the accommodations that provided safety, and a place to decompress from the day. There was the soothing experience of being able to look out from the 17th floor to the buildings which all seemed to be neatly lined up with boxes of lights, in perfect angles, bringing a sense of order and determination..... the safety of numbers, counting those squares... even in Toronto, 4 always precedes 5, and 45, 46. There was immense comfort found in staring at those blocks of lights, boxes so perfectly arranged on the sides of those buildings, the roads traversing as long lines on a canvas of the artist....
There was comfort, which was essential after a day filled with uncertainty, newness, and sensory bombardment.
This time will take the opportunity to say a deep thank you to those two individuals who have made these accommodations possible. Not only were they comfortable with large soft beds, plush carpets (one room even had complimentary fruit tray brought in!) dim lighting, but these two rooms became the escape that needed. The haven of safety wherein was able to settle the nervous system, de-highten the senses, and find comfort in the neatly arranged environment. Am very grateful for these accommodations which truly served as a self-care center rather then merely a place to sleep.
It was during this trip that discovered things about other parents of autistic kids, other autistic adults, and professionals dealing with autistics and their families as well as the resources/organizations that are available in Canada to support us all.
Wednesday October 23rd was the day that entered the conference location. A woman from the Geneva Centers online message board was there to meet minna at the hotel lobby. Aasa showed how to get to the conference center, and where to go to register. Upon entering the Metro Convention center it was quite obvious this was a location not well equipped for the sensitive systems of the autistics. The long hallways filled with harsh lights, flanked by mirrors at times, bombarded the eyes into a state of overwhelm quite quickly. Yet through this all, the volunteers at the Geneva centers registration booths were soft spoken, friendly and helpful. This was the first example of how some people were much easier to deal with then the environment. This is opposite of what am accustomed to. Here at home, the environment is perfect, and in town the people are harsh, quick moving, unpredictable and frightening.
We found our way easily down to the huge room, where Tony Attwood and Carol Gray were to deliver a whole day session titled “Improving Friendship Skills & Social Reasoning for Individuals with ASD”. We arrived approx. 1˝ hours prior to the commencement of this workshop, and found seats very close to the front of the large room. This is an important consideration for an individual with ASD when finding seating in a room that will be filled with 711 people. To be at the front ensures less confusion with hundreds of people behind you rather then in front. This ensures better concentration, focus on topic, and most importantly for mineself, less opportunity for anxiety due to the close proximity to these hundreds of people. If there was a suggestion for Geneva Center they could set aside some preferential seating along the few front rows (not necessarily beside each other, but staggered throughout the front few rows) for individuals with ASD because some may not well tolerate arriving so early.
Tony Attwood and Carol Gray did a fine job sharing the presentation, with Tony addressing aspects of autistic characteristics, learning styles, and sharing autistic culture, while Carol described various methods of teaching friendship skills, and social understanding through the use of social stories.
Tony said “solitude is the ASD persons cure for ASD”, and that the “severity of the autism is proportional to the number of people present”. This made SO MUCH sense. This is what often happens with ASD adults. We end up sheltering ourselves from the world within which we realize we do not fit, and become very isolated. Although many of us like lots of alone time, we do not always wish to be complete hermits. Yet because we are not reminded of, or differentiated for, our differences when we are alone, it sometimes becomes a way to keep our sanity and an attempt to keep our self-esteem intact. This can be difficult though, because some of us who have milder forms of autism (HFA, PDD-NOS, and Aspergers) we do like to have some social contact, and our ineffective attempts at socializing tears away at our fragile self-esteem. This is why there should also be some sort of “circle of friends” programs for adults with autism.
They spoke to the value of friendship. Saying, “good friends are a preventative and an antidote to depression”. This is why it is important for children with ASD to be engaged in some sort of a “friendship program” (such as the “circle of friends” at some schools) and for teens a “team work program”. This is where they learn about working together with others, the basis of employment and adult relationships. Also friendships facilitate appropriate conflict resolution skills. This is important for future adult relationships, and work environments because a common AS conflict resolution method is either punish the other, or keep arguing your point until the other gives up. There were many detailed suggestions on how to teach friendship skills to children of various age levels. Through role play (where an adult acts as a friend), writing social stories teaching the AS child how to act when in the company of others, and showing older kids what is cool and trendy so they have something in common with other children their age. There were many other suggestions that can write in greater detail to those who specifically ask for them.
They also spoke on topics of bullying, and how to engage student populations in anti-bullying programs, as well as how to teach a student with ASD to stand up against bullying. What learned there was that the target of bullies is people who are alone. The child who spends recess/lunch hour alone is most likely to be bullied. This yet again speaks to the importance of having a buddy system or a “circle of friends” for your ASD child/teen (also believe this applies to adults as well. Adults also get bullied. Will speak to that in a moment). Carol Gray said that by age 7 children notice if a child is on the sidelines. So they conclude there must be something different to that child. She said that it is important to encourage the ASD child to play beside others and that it is essential to have trained supervision. The adult supervising must be trained to recognize the subtle forms of bullying such as gesture. To give you an example of how ASD adults also get bullied will share something that happened this summer. Here in this area there are very few people living year round. There are the few local people who have noticed that after living here a year, have not met them, and have not socialized with them. Just don’t know how to do that. The landlords’ son and his family finally invited minna this summer, for a visit. They were having a party with two other couples there and an old man. This turned out to be a bad social experience. The old man started saying things like “what do you do there in your little cabin all the year? Drive your self crazy?” While he rolled his eyes in his head, which didn’t understand. This went on for a while, and he became mean. One of the other women there said, “ we don’t need people like you in our neighborhood”. This is sometimes what happens to ASD adults when even adults around them can be mean. This was bullying because am afraid of that woman and the old man, and do not wish to engage with them in any social contact.
This session helped to understand the nature of bullying better, and even learned that bullying is not just words or physical hurting, it also can be gestures such as the rolling of the eyes, or a “thumbs down” sign. Tony spoke to the fact that these signs of bullying are hard for ASD people to recognize. Carol said that once a person has gotten away with bullying at a minimal level (such as gestures) they will usually escalate their bullying to something more serious.
Something that came as a very important learning for mineself was about resolution and finding closure. What Tony said was that approximately between ages 9 to 13 children learn that conflicts are resolved by discussion that can strengthen the relationship. These conflicts are forgiven. Then in adolescence to adult, conflicts are resolved with self-analysis and mutual insight. These are skills where an AS individual can have great difficulty. The mutual insight can be almost impossible to arrive at, and the conflict resolution through discussion often does not lead to forgiveness. Why? This can be because in many AS individuals, in order for something to be resolved, it needs to be understood which brings closure. In order for it to be understood it needs to make logical sense. One thing needs to lead to another. There needs to be a process that “makes sense” in the AS mind. Often, people will argue, and decide to “agree not to disagree”, or “just drop it”, or “forget it” and then they act as if nothing had happened. This can be very difficult for AS individuals to comprehend, and therefore it is essential to engage in discussion on the issue until there is some sort of resolution. This might sometimes be so simple as making a social story that describes different ways people can view an issue. Here is a brief description of what it means for an AS mind to leave things unfinished. This sometimes happens in conflict and it can have a huge impact in the mind of an autistic. "Lack of closure" he called it. Since have had this "problem" in life for yr.’s, that am not able to put things aside, unless they are somehow finished.... Had wondered what was "wrong" with mine self. Well Tony answered it. He said that for persons on spectrum if there is no closure to something that issue can bother them for yr.’s. This is why sometimes if a child comes home from school and tells of some sort of injustice that happened in the playground, they will continue on and tell of ALL the injustices that they have ever experienced that are similar situation. So they will perseverate on other instances which were not fair to them. Because there was no closure to that child for those unfair things, and so he will keep that inside of himself, and it boils out when another unfair situation arises. Sometimes bringing about a reaction which has all the emotional energy from all the unfair situations in his life. So if the child receives one less meatball on his plate then the brother, all of a sudden he can have a 2-hour meltdown. It is difficult to understand why he had this 2-hour meltdown from one meatball. Even if the meatballs are not his favorite food. It really isn’t about that meatball. It is about all the unfair moments in his life that didn’t have closure, and that one meatball triggered it to all come out. Working towards closure in situations such as conflict among friends is an essential ingredient in helping AS individuals maintain their friendships.
This session was excellent in content and presentation was well coordinated.
The end of their sessions leads mine mind to think of something that still am trying to understand. This has to do with following instructions and being observant to the subtle queues that ASD individuals often use in an attempt to communicate. Because some of this has no closure in mine mind, am still thinking about it, and trying to understand. When tried to ask a few questions at only a few of the various sessions (rarely ask anyone anything, and mine difficulties with verbalizing contributes to this) found it difficult.
Tony Attwood seemed to be the presenter who was most kind and receptive to ASD persons. After Tony’s and Carol’s workshop there was opportunity for questions. The person concluding the session said "please do not come to Tony for questions here, he will be at the Parentbooks stand to sign autographs and you can ask questions there”. Many adults broke the rules. They approached Tony immediately after the session. He tried to get to the Parentbooks stand. So went there. Waited. Once he arrived, the people there said he had a different table to go to. By now started feeling quite stressed because didn’t know what would happen and the intense crowds were too close. Wondered if will be able to ask him anything. By now, was on sensory overload rocking slightly to reassure the mind the floor was still there, trying to cover the ears and squint the eyes for something to focus on. He seemed to understand that somehow. Perhaps there is something to the way that the fingers start to flap a little, the feet start to pace from one to the other, and the body shifts in tune to an invisible metronome increasing in pace, that alerted his attention?
He came up to mineself and said, "it looks like you want to asks something?"
"Yes, is this a good time to ask?" replied. He said, "well, let me find my table just please follow me". As he stomped through the crowds, he looked back to see that was coming. Then there were tons of people pressing against each other.
They were waiting for his signatures. Never was able to understand what is the attraction of having someone’s signature? Unless the person is a friend of yours, that would be meaningful.
So Tony said to them "will you please wait a while, I am going to speak to this lady first". He seemed to care about adults with ASD wanting to ask something. When he noticed, he tried to make it possible. Unlike some of the other presenters who would ignore, walk around, turn their backs on, mineself as slightly rocked, flapped and squinted in their presence, patiently waiting to ask questions. Think it is important for those who work in the field of Autism to recognize that the children they work with, will become adults like mineself, who also may wish to ask questions, offer suggestions or share information but do not follow the same social queues. We often are not as forceful in similar ways as NT adults, or we follow rules and find ourselves left behind the pushing crowds.
Being on the topic of people, will now share some other encounters with them. Already mentioned Aasa, the woman from the Geneva Centers message board. She not only came to pick minna up each day from the hotel to help get there, and to cope with the noisy, busy, confusing environment, but she also was very friendly and supportive throughout the conference. Helping to find the rooms, to maneuver the crowds, and to find food. She took mineself to a great Indian food restaurant where we had a lunch buffet. This was wonderful because being alone, would never had been able to manage this. She also was also very friendly and felt comfortable around her. Then there was Estrella who came and greeted minna and was gentle and kind. She gave a card, a gift for the children and expressed that mine words on the message boards “have been a great gift” to her. Then there was the Royal bank volunteer who tried to see a ticket for a raffle. When told her that didn’t like to fly and really had no use for a video recorder either (those were prizes) she wanted to talk to mineself. She asked about autism, saying that she didn’t know anything except for what she had just heard that day while selling the tickets. She seemed like she really wanted to hear, and so told her what was able to. Geneva center had gotten many very nice volunteers working at the conference and they should ask again those same people back. This leads to the most amazing artwork some autistics brought to put on display there. There was a man from Japan, who worked with paper, cutting fine figures, and scenes with the most intricate details. His work was on display and for sale. There also were some art for auction and they were well worth buying. The lady at the Great Plains laboratory display was very gentle and she was not pushy. This is a good quality to have in autism conferences. Was able to look through her displays, and wasn’t bombarded with her verbalizations. There was also a display by a group that provides service dogs for autistic individuals. They had two dogs there.
While in Toronto met Aasa and Estrella, the Royal bank lady, the two dogs, and Tony Attwood. Also discovered that going to Toronto, busses are very quiet, and almost empty, but leaving Toronto they are full with people on each seat. Can understand that, because Toronto is a place anyone can wish to escape from. Also discovered that in Toronto a cup of cold coffee is an item on the menu. Also that in hotels a small cup of coffee is $5, and a large one $11, cold cereal with fruit $7, and $12 for breakfast. It is good that thought of bringing some canned fruit, and a can opener.
Will write more at a later time, on some of the other sessions that went to. Will provide greater detail of what was said by the presenters, but this concludes the basic story of the trip to the Geneva Center for Autism International Symposium on Autism 2002.
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