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| FROM THE FRONT LINES... LIVING WITH AUTISM |
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OAARSN wants to sharpen its focus on adult autism and disability issues in Ontario. Most current news coverage of autism is about young children and their parents. We feel deeply for them in the challenges they live with and we rejoice with them in the greatly increased focus on autism and effective interventions for children in the past few years. News of adults with autism is almost all negative--about disasters and abuses. Most adults with autism are simply overlooked and forgotten except by their direct caregivers. We encourage people who live with autism in any way to share their stories and insights through the OAARSN website. The stories should be true, but names may be changed to protect privacy. You might like to discuss the idea of your story with us in advance. We use the phrase "the front line" with its two main meanings. One is the war zone—the area of active engagement with an enemy which in our case is "one of the most awful handicaps presently known" to humankind. The other meaning is the most advanced or responsible position in any field of activity—being out in front as a pioneer of the most sensitive and effective ways to support people to do their best and enjoy life.
Exploring The World With Friends Andrew’s
story--what is possible when supported with true friendship and belief
in one’s abilities, and how to grow through grief and loss. Also includes
accounts of Bittersweet Farms, Ohio, and Camphill Village Ontario, which
both serve adults with autism.
Isaac is an adult in his mid-30s who is quite severely handicapped by autism. He does not speak with his voice and finds it hard to express himself in ways others can easily understand. He tries, but cannot always control his movement disorders and sensory integration dysfunction, especially if he is upset emotionally. His life has been hard for him in various ways. But insights into how Isaac experiences autism and the efforts of his parents and friends to help him get his life together have been succeeding. Isaac allows his true story to be shared so it may inspire others. He hopes others will feel encouraged by knowing that he has taken several steps towards a better life. Isaac’s story has messages for others who live with autism. But the combination of strategies that have worked for him would not work in exactly the same way for another person with autism. We plan to
tell Isaac’s story in weekly instalments. Topics include:
1. Order and structure help me to understand and organize my world and to foresee what is going to happen. 2. Respect my rhythm. If you understand my needs and my special way of seeing reality, you won't find it hard to relate to me. Don't let my autism depress you; I can progress and grow more and more. 3. Please don’t speak too much or too fast. For you the words fly as feathers, they don't weigh for you; but for me words can be a very heavy load. 4. Like all other children and adults, I need to share the pleasures of doing things well and having my efforts recognized. 5. It is hard for me to understand the sense of a lot of things you ask me to do. Please help me to understand, and don't allow me to become brutalized and inactive. 6. Other people are sometimes very unexpected, too noisy and excessively exciting. Please respect the space that I need, but don’t leave me alone. 7. Whatever I do, I am not against you. When I am irritated, hurt myself, when I break something or I am too anxious, when it’s too hard to do what you ask me, I am not trying to upset you. Don't think I have bad intentions. 8. My development is not irrational, although it is not easy to understand. It has your own logic. Most behaviours you might want to change are my ways of coping with the world. Please make efforts to understand me. 9. My world is not complex or closed; it is a simple world, innocent and open without hoaxes and lies. I am much less complicated than the people who are considered normal. 10. As well as being autistic, I am a human being who shares most of the feelings of normal people. I like to play and have fun, I like my parents and the people around me; I am happy when I do things well. In my life there is more to share with other people than to separate me from them. 11. Please don't attack me chemically! 12. Nobody should be blamed for my autism. Parents and professionals should work together. The idea of accusing anyone only causes suffering. 13. Be realistic in what you ask me to do, but keep supporting me towards more autonomy, towards understanding and communicating better. 14. It can be worthwhile and satisfying to live with me. Don't change your life completely because you live with an autistic person. It doesn’t help me for you to feel isolated, obsessed, depressed—under the weight of an unbearable load. I need stability and emotional well-being around me to feel better. It helps me for you to have rest, time for your own activities, and some balance in your life. 15. Please accept me as I am, and don’t make your acceptance conditional on curing me of autism. My life can be very satisfactory if it is simple and calm. To be autistic is a way of being. Adapted from the original by psychologist Angel Riviere Gómez (technical adviser of APNA in Madrid, Spain) and contributed to OAARSN by Maria Luiza de Brito Mendes of Brazil. A message on handling grief from Dennis Debbaudt: COMMON GRIEF AND TRAUMA REACTIONS Grief is a difficult yet necessary process that is normal after a significant loss. Grief reactions vary from one person to the next, yet in general may include the following:
Trauma reactions are different from and in addition to grief reactions. The one word that describes grief is sadness; the best word that describes trauma is terror. People may experience both reactions. Trauma reactions include the following:
These lists are not all-inclusive, and overlap to a degree. Grief and trauma specialists recommend that after a traumatic loss, parents increase for their children patience, safety, security and basic nurturing. Help your child get the rest they need, eat sensibly and spend time with caring and understanding people. Seek out support from family, friends, or your church support system.
Tips for relatives and hosts of holiday gatherings who might need a crash course in what to expect from their guest with autism. This article appeared in the holiday 1999 issue of ASAP News! (Volume 3.5), the Autism Support and Advocacy Project and Potential Unlimited Publishing. It was originally reprinted by permission of editor/author, Viki Gayhardt, in the FEAT Daily Newsletter November 28, 1999. I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive develop-mental disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for me to adapt to my surroundings. Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support. Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard. When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me and my parents will handle the situation the best way they know. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating: sight, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky—I literally cannot eat certain food as my sensory system and/or oral motor coordination are impaired. Don't be disappointed if mommy hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me and understanding of how I have to cope...mom and dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "Self regulation," or "stimming'. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this "perseverating" which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me "stim" for a while as they know me best and what helps to calm me. Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!) It hurts my parents' feelings to be criticized for being over-protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support. Holidays are filled with sights, Sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow tippy rules. I am a unique person--an interesting person. I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes!
(thanks to Alison Ouellette for recommending this) Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with sombre telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us
have one thing in common. One day things were fine. We were pregnant,
or we had just given birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything was fine. Then, whether
it happened in an instant, as it often does, or over the course of a few
weeks or months, our entire lives changed. Something wasn't quite right.
Then we found ourselves mothers of We are united,
we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy. Some need respirators and ventilators.
Some are unable to talk, some We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field. We know "the" neurologists, "the"
hospitals, "the" wonder drugs, "the" We have taken
on our insurance companies and school boards to get what our children
need to survive, and to flourish. We have prevailed upon the State to
include augmentative communication devices in We have learned
to deal with the rest of the world, even if that means walking away from
it. We have tolerated scorn in supermarkets during "tantrums" and gritted
our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning
strangers. We have tolerated mothers of children without special needs
complaining about We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped
with holidays. We have found ways to get our physically handicapped children
to the neighbors' front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or treat." We have accepted
that our children with sensory dysfunction will never wear velvet or lace
on Christmas. We have painted a canvas of lights and a blazing Yule log
with our words for We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned
the fact that we never got to relax and sip red wine in Italy. We've mourned
the fact that our trip to Holland has required much more baggage than
we ever imagined when we first visited the But we, sisters,
we keep the faith always. We never stop believing. Our love for our special
children and our belief in all that they will achieve in life knows no
bounds. We dream of them scoring touchdowns and extra points and home
runs. We visualize them running sprints and marathons. We dream of them
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars. By Maureen
K. Higgins
Next year next level: In ought-two, the most valuable people will be those who enhance the world around them. By MIKE LIPKIN, The Globe and Mail, Facts and Arguments, Monday, December 31, 2001 – Print Edition, Page A14 So what does life expect of you in 2002? Better yet, what do you expect of yourself? Well, here's the defining truth of the new year: we are all being held to a higher standard. The age of indulgence ended on Sept. 11. It's now the age of accountability. So here are 10 of the best New Year's resolutions you can make. 1. Resolve to stay brutally optimistic. See the opportunity in every difficulty and anticipate the most favorable outcome out of every situation. Whatever you look for, that's what you'll find. We can get better or we can get bitter; it all depends on the lessons we draw from each experience. Optimism is like electricity -- very little happens without it. Know this truth: you have all the resources you'll ever need to handle all the challenges you'll ever have. It's in the true emergencies that the true you emerges. 2. Resolve to identify the most powerful benefit you offer to the people around you and then deliver it. "The purpose of life," said George Bernard Shaw, "is a life of purpose." What's yours? Where are you investing your personal energy: self-preservation or adding value to others? Here's the well-being paradox: if you're only concerned about yourself, you cannot take care of yourself. Only by helping others can you succeed. 3. Resolve to pump up your personal vitality. In the game of life it's not about who's right, it's about who's left. Over 60 per cent of us are more than 36 years old. The real currency of the new century is not cash, it's vitality. It's the ability to keep going every day of every week of every month of the year with vigour and verve. All you are to the people around you is a source of energy and you cannot give what you don't have. Ninety per cent of all adults do no physical exercise at all. More than half of us are overweight. A third of us still smoke. So, this year, resolve to enhance your physical, emotional and mental vitality. Take just a small step. First you'll amaze yourself and then you'll amaze everybody else. 4. Resolve to be habitually generous. Success is not something you pursue, it's something you attract by what you become. The more you give of yourself, the more favours you attract from others. People have a deep-rooted drive to give back. So resolve to search for ways to contribute to others. Here's an interesting aphorism: Live above the line. If the line represents others' expectations of you, consistently surpass those expectations. You'll develop what the business author Ken Blanchard calls "raving fans," people who become walking billboards for you. 5. Resolve to go on a mental diet. Sticks and stones can break your bones, but words can scar you for life. It's humans, not elephants, who never forget. So resolve to use the language of conciliation, not the language of confrontation. Avoid the temptation to vent your negativity on others. Instead, use words that express your joie de vivre and connection with others. 6. Resolve to be a global citizen, fully open to the cultures and influences of others. There is a direct correlation between personal well-being and openness to other peoples' ideas and cultures. If someone has a different point of view, they're probably right as well. There are no absolutes anymore, so welcome different opinions. Become a one-person champion of plurality. Not only will you make lots of new friends, but you'll also gather multiple reference points to help you resolve personal challenges. 7. Resolve to take control of your destiny. Don't be so busy trying to make a living that you forget to make a life. Decide who you want to be and what you want to achieve and then stride boldly towards your vision. The most precious human commodity today is confidence. 8. Resolve to increase your human connectedness. The person with the best connections wins. The wider your network, the more opportunities you generate. It's all about trust. And it's all about profile -- your presence in the minds of the people who matter. So invest at least 10 per cent of your time broadening your sphere of influence. Connect other people to opportunities within your network: cross-pollinate their potential. When you are with others, make every encounter a pleasurable one. When you listen, truly listen. And burn your fear of rejection. 9. Resolve to increase your creativity by letting go of the familiar. Nothing is as far away as yesterday. Try to see the world through fresh eyes every day. As Salman Rushdie writes, every year is the Stone Age to the year that follows it. Listen to your intuition and follow your instincts, they'll tell you what to do before your head has had a chance to figure it out. You are a Picasso or Einstein at something. Discover what it is and then develop it to the maximum. 10. Resolve to be you because others are already taken.You and I are at our best when we're being authentic.We're at our best when we're being positively spontaneous because that's when all our energy is being invested in the person in front of us or the task at hand. In a hyper-competitive world, we cannot afford to second-guess ourselves. Success in the new, new age is all about speed. So act now, because if not now, when? So there you have it, 10 New Year's resolutions to help improve your life in 2002. So decide. And act. Mike Lipkin
is a Toronto-based author As for whether I have any exceptional people in my life who have positively affected me, I can say, yes - probably dozens. One of them has been my best friend for just over ten years now. As with all of my other friends, our differences make our friendship much more interesting. Sure we may communicate in different ways and have different levels of intellect, sure she may love the colour red, while I prefer black, sure she may have spent her formative years in a provincially funded institution while I was at home with my family but we still have far more similarities then differences. We both love shopping and eating out at restaurants, we both love going to concerts or movies together, we have spent plenty of time giggling over the guys we've had crushes on, and when I married mine she was there with tears in her eyes when she saw me in my wedding dress (just as all of my other close friends were). When I needed someone to hug me because someone I loved passed away, she was there to help out (just as any good friend would be). And when she needed someone to support her as she moved into her first home, I was there to help out (just as any good friend would be). Is it difficult having a best friend who is severely mentally disabled? Sure sometimes. But sometimes I feel burdened by my friends who are PMSing or going through seemingly never-ending boyfriend problems, or who are always looking to borrow $10- that doesn't mean that I love or value them any less. Taking
the "local" to Toronto in mukluks
Minna reports on the The Geneva Centre’s International Symposium on Autism 2002. For a Northerner, living several kilometres 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 we share life with.... a trip to Toronto is quite an adventure. "Express" to Toronto read the sign on the bus beside the one labeled "local" to Toronto. This was the first of many choices on this trip to the Geneva Center’s International Symposium on Autism 2002. I decided on the "local" fearing the scenery would go by too fast on the express, and also because I am a local person... not one equipped well for rapid transit, or long-distance traveling. This seemed to be a good choice. Throughout the trip, there were only five other people on this bus, and wondered how Greyhound was able to make a profit. Along the way I discovered little towns where even locals like me couldn’t get lost. The street names were quite self-explanatory, such as "Medical Building Rd", or "Water Treatment St." These towns were much like the small Northern Ontario town many km away from my 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 four 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 my sensory system with a serious load. The realization that this was just the beginning of a trip, which would push my coping skills to the limits, was setting in--making me think of planning enough opportunities for "down time". At the first night in the hotel, it became evident just how fortunate I have been. Here I 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? This became the challenge I encountered the following morning. As time went on, the conference commenced, people were met and two were very helpful and supportive towards me in ways that without which, I 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 four 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 I 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 a complimentary fruit tray brought in!) dim lighting, but these two rooms became the escape that I needed. The haven of safety wherein I was able to settle the nervous system, de-highten the senses, and find comfort in the neatly arranged environment. I’m 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 I discovered things about other parents of autistic kids, other autistic adults, and professionals dealing with autistics and their families as well as the resources and organizations that are available in Canada to support us all. Wednesday October 23rd was the day that I entered the conference location. A woman from The Geneva Centre’s online message board was there to meet me at the hotel lobby. Aasa showed me how to get to the conference center, and where to go to register. Upon entering the Metro Convention Centre, 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 overwhelm state quite quickly. Yet through this all, the volunteers at The Geneva Centre’s 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. 1½ 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 me, less opportunity for anxiety due to the close proximity to these hundreds of people. I suggest that The Geneva Centre 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 person’s 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 I 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. I learned that bullies target 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. (I believe this applies to adults as well. Adults also get bullied). 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 supervisor 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, I 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. I just don’t know how to do that. The landlord’s son and his family finally invited me 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 yourself crazy?" While he rolled his eyes in his head, which I 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 their differences are not understood, and even adults around them can be mean. This was bullying because I 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 very important I learned was about resolution and finding closure. Tony said 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 I have had this "problem" in life for years, so that am not able to put things aside, unless they are somehow finished, I had wondered what was "wrong" with me. Well Tony answered it. He said that for persons on the autism spectrum, if there is no closure to something, that issue can bother them for years. 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 that contains 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 two-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 daylong session by Tony Attwood and Carol Gray was excellent in content and the presentation was well coordinated. The way it ended made me think of something that I am still trying to understand. This has to do with following instructions and being observant to the subtle cues that ASD individuals often use in their attempts to communicate. When I tried to ask a few questions at only a few of the various sessions (I rarely ask anyone anything, because of my difficulties with verbalizing) I 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 I went there. I waited. Once he arrived, the people there said he had a different table to go to. By now, I started feeling quite stressed because I didn’t know what would happen and the intense crowds were too close. I wondered if will be able to ask him anything. By now, I was on sensory overload and rocking slightly to reassure my 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 me and said, "It looks like you want to ask something?" "Yes, is this a good time to ask?" I 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 I was coming. Then there were tons of people pressing against each other. They were waiting for his signatures. I 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, me as I slightly rocked, flapped and squinted in their presence, patiently waiting to ask questions. I 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 me, who also may wish to ask questions, offer suggestions or share information but do not follow the same social cues. We often are not as forceful in similar ways as neurotypical (NT) adults, or we follow rules and find ourselves left behind the pushing crowds. On the topic of people, I will now share some other encounters. I have already mentioned Aasa, the woman from The Geneva Centre’s message board. She not only came to pick me 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 me to a great Indian food restaurant where we had a lunch buffet. This was wonderful because alone I would never have been able to manage this. She also was also very friendly and I felt comfortable around her. Then there was Estrella who came and greeted me and was gentle and kind. She gave me a card, a gift for the children and said that my words on the message boards "have been a great gift" to her. Then there was the Royal Bank volunteer who tried to sell me a ticket for a raffle. When I told her that I didn’t like to fly and really had no use for a video recorder either (those were the prizes) she wanted to talk to me. 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 as if she really wanted to hear, and so told her what was able to. The Geneva Centre had got many very nice volunteers working at the conference and they should ask again those same people back. The most amazing artwork by some autistics was on display. 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, I met Aasa and Estrella, the Royal bank lady, the two dogs, and Tony Attwood. I discovered that buses going to Toronto are very quiet, and almost empty, but leaving Toronto they are full with people on each seat. I can understand that, because Toronto is a place anyone can wish to escape from. I also discovered that in Toronto a cup of cold coffee is an item on the menu. And 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 I thought of bringing some canned fruit, and a can opener. I will write more at a later time,
on some of the other sessions that I went to. I will provide greater detail
of what was said by the presenters, but this concludes the basic story
of my trip to The Geneva Centre’s International Symposium on Autism 2002.
The
journey to get a support worker:
How to get services when you are denied them. By LG who lives with her two children in a trailer on the edge of a lake in northern Ontario, 50 km from the nearest city. LG and both children have been diagnosed with Autism Spectrum Disorders. Monday last week it finally happened. I GOT a support worker. Here is an outline of the 18-month long fight to get this happening, and how it got done, and what resistance there was along the way. 1) When we were living in a city in eastern Ontario, I got a support worker from the Association for Community Living. Perhaps a part of that success was the fact that I had reached OAARSN in early 2000 to ask for suggestions on who to contact and what to do. One contact was a research scientist in that city who had a personal interest in autism and she helped me to get a support worker. 2) We moved to northern Ontario and were referred by CCAC (Community Care Access Centre, a “one-stop-shopping” centre for health care needs in Ontario) to the service co-ordination agency that decides if your name goes on a waiting list for support workers or not. 3) This agency wouldn't accept the Aspergers diagnosis I had received in southern Ontario because it was by an MD. They felt it was not valid, and decided that they required me to see their local developmental services clinic. 4) I went to see a “psychological associate” (who has a Masters degree in Psychology) at the developmental services clinic. This person decided that my "obvious social skills deficits, anxiety, OCDs, and self stimulating behaviours, were due to some mental health issue other then Aspergers"…. This person considered that I could not be autistic, because I have empathy and say I love my children and because I am aware of my social deficits and behaviours. I was referred to a local mental health clinic to deal with that "other mental health issue" which caused me to look like I am autistic. 5) The service
coordination agency said that, since they only serve people with developmental
disabilities, and according to the 6) I waited for mental health clinic to contact me, for an assessment with their psychiatrist. 7) In the meantime, I contacted online agency dealing with autism in southern Ontario, and asked for names of other psychiatrists who can make assessments for autism in adult population, and discovered one in a developmental services clinic in another city in northern Ontario. 8) When I contacted this psychiatrist through referral from my family doctor, his office sent an information package that asked for details of full life history, any supporting documentation, and also consent forms for all psychiatric involvement, as well as two tests to be filled in and sent back. 9) I traveled by bus to the city where the psychiatrist was based. The fare was costly, about a week’s grocery budget. (We ate lots of fish that week!). The psychiatrist seemed to say immediately that he felt that I had high-functioning autism (HFA), upon reading the previous reports, the tests that I did for him, and the life history. He said that he would make a referral to the service coordination agency for a support worker. 10) By this time, the appointment with the local mental health clinic came through. I went to see this psychiatrist as well, thinking that it couldn’t hurt to have two reports. This psychiatrist said that through he did not know much about autism, he felt that I was clearly on the autism spectrum, and that he would put a label of PDD-NOS so that no-one would think I am incapable of caring for my children alone as a single parent, as they would if he said autism. (This showed his lack of knowledge about autistics BUT he did know enough to be on the right spectrum with his diagnosis). 11) When I contacted the local service coordination about the first psychiatrist’s report, and asked if they now believed that I had a developmental disability as I had been told in the eastern Ontario city, they said “his report does not say you have a developmental disability" (even though the report said I was on the autism spectrum). I contacted that psychiatrist’s office and told him what had happened. He wanted to see me again. 12) When the intake worker at the mental health centre contacted the service coordination agency to tell them of the second psychiatrist’s report, the service coordination people said flatly "we only want the most recent report"…. When told that the report was done that week, they replied "we don't want it, we already have the report we want". The intake worker told me she was shocked and couldn't believe it. 13) The first
psychiatrist was shocked to learn that the service coordination said his
report didn't say that I had a developmental 14) When I contacted the service coordination agency the same day that I knew they had been faxed the first psychiatrist’s new letter, and had it in my email box, they wouldn’t answer. They refused to call back or reply in any form. 15) By this
time, Elizabeth Bloomfield at OAARSN suggested perhaps contacting the
member of parliament (MPP) in our area, Shelley Martel. Also, two online
friends wrote faxes and made phone calls to service coordination about
my situation. One never got through to the executive director and the
other one got a call back saying she will "look into" my case and contact
me in a "couple of days". Nobody was able to talk about my case because
of confidentiality reasons, but the ED agreed to look into it and contact
me directly. She also said that she was not familiar with the case,
although I had written a fax directly to the Those two
online friends contacted the provincial autism advocacy organization as
well as the local chapter president via email, as I had done myself.
The local chapter president said on the phone that “she has been told
where to go, she can do it herself" (about contacting the service coordination
to ask for a support worker). When we contacted the provincial office,
we never got a response. I got a reply via email from the local chapter
president finally who said that she wished me well, and it seemed that
many people were helping me get what I wanted. No advocacy, or other support
from the provincial autism With the encouragement of online friends, I didn't give up. I wrote to Shelley Martel (our MPP), and the OAARSN offered to write to her as well. 16) By the time all these people, including Shelley Martel, had contacted the service coordination agency, so they couldn't anymore ignore the issue. They decided to send a service coordinator. This is a person who will decide IF I will even be placed on a waiting list with the agency that provides the support worker. This is the way it works now: there is one agency as the "honour guard" protecting the services from being accessed directly by doctors, agencies, or service users themselves. This way, not even the psychiatrist or the mental health center is able directly to contact the community service agency that actually provides the support workers. Everything has to go through the service coordination centre. 17) When
the service coordinator came, she had a HUGE file about me. She had all
the doctors’ reports, all the letters, faxes, and notes from phone contacts
from several people. First thing she said: "there is a year and
half waiting list for support workers, IF you qualify for one". Interestingly,
neither of the psychiatrists’ assessments, detailing the urgent need for
a support worker was sufficient to actually GET a support worker. This
service coordinator would determine if I needed one. Imagine that!! In
the end, once she understood our situation, asked questions etc., she
said: "clearly you are in need, I will ask to have your name `fast tracked'
through the system." She spoke of the list being assessed "according to
need". SO, in the end, she said 18) Exactly a month and a day later, the support worker arrived for her introductory meeting at our home. How was this accomplished despite the strong efforts to deny the support from several people? It took a consistent effort on several different fronts, by myself, private citizens, and other agencies and groups to make this happen. It’s important to know that if I had been all alone in this, I would still be without a support worker. Without the support of persons online, I would not have had the emotional resources, nor the knowledge of what to do, to be able to fight for this service. 1) ONLINE advocacy by friends who wrote letters, made phone calls, sent faxes and emails. 2) ONLINE group such as OAARSN offering suggestions, ideas, general support, and advocacy. 3) Several trips to psychiatrists who knew what to say, and had the energy to put forth an effort to keep on approaching the service coordination agency despite having their expertise ignored at times. 4) IMMENSE amount of supportive contacts online, via emails, and in message boards, where I was able to vent, write out my despair, feelings of hopelessness along the way, people who validated my feelings and didn't say "that's just the way it is, nothing can be done about it"… people who offered to go to the media with this IF it amounted to nothing in the end (if this was not going to get resolved by the time we had contacted the member of parliament Shelley Martel). 5) Agencies involved permitting email contact with me. Without this, I would not have been able to communicate with them, and get their support. 6) Numerous
letters being written, not only by me but by several people. A file about
me is several inches thick at the service 7) Paper trail. This was important. Everything was saved, and every letter was copied to any person that could think of who could be involved. Although the provincial autism organization was not supportive in this process, I sent copies of all of the correspondence to them. I also started sending the copies also to the two agencies that actually provide support workers in the nearest city. The reason for this was, so that they can see how difficult it is to even GET to them, through the service coordination agency. 8) Contacting a province wide legal defense association specifically dealing with persons with disabilities. This was done, because these people DO at times take on cases where disabled people are denied services, and it helps to let local service agencies know that we are in communication. This organization is called ARCH (A legal Resource Centre for Persons with Disabilities), and can be found at: http://www.arch-online.org I hope my
story will help others to overcome the obstacles I experienced on my journey.
People like the psychological associate and agency staff who seemed not
to know enough about autism in adults. And the service coordination agency
people doing everything in their power to deny, ignore, not accept reports,
and generally stand in the way of doing their job… which is to refer me
for a support worker. (By the way, my kids have been going through
the same struggle with the developmental services agency. They also lost
their diagnosis upon coming here. It has taken a year to acquire my son’s
diagnosis back again, so that he
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