Autism Nowautumn 2007

volume 20, number 3

AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

1 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

BOARD OF DIRECTORSAUTISM SOCIETY OF EDMONTON AREA

EXECUTIVEPRESIDENT Dr. Deborah BarrettVICE PRESIDENT Terry HarrisTREASURER Ryan GuenterSECRETARY Jean Ashmore

DIRECTORSLaurie Adam Amy Bourne Leanne Forest Dr. Keith Goulden Mark Lynch Shane Lynch Andy Sung Anh Ong Karen Phillips Charlene Prochnau Alan Wagner

Articles, opinions and events in this newsletter do not necessarily imply the endorsement of the autism society of edmonton area and are printed for information only. !e editors of autism now are Deborah Barrett and Roman Sokolowski.

!e Autism Society of Edmonton Area is a non-profit organization founded in 1971 by a concerned group of parents and professionals. !e society’s mission is to create a community where individuals with Autism Spectrum Disorders are valued and can achieve their full potential, and to help families support their loved ones with autism throughout the lifespan.

AUTISM SOCIETY OF EDMONTON AREA #101, 11720 Kingsway Avenue Edmonton, AB T5G 0X5 (780) 453-3971 / (780) 447-4948 email: autism@compusmart.ab.ca website: www.edmontonautismsociety.org

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noticed some ads in the Edmonton Examiner, Your Health, Edmonton’s Child, Edmonton Senior or the ATA newsletter.

!e thrust of our mini-campaign was to educate the public about autism and to point out that autism is invisible. People with autism cannot be distinguished from the general population just by looking at them. To that end, the Autism Society Players have written, acted in and produced a short commercial informing the public of the nature of autism and stressing that autism is invisible. !is commercial was first aired at the Opening Doors Gala on October 13 and was much appreciated by the guests.

But work needs to continue. Plans are in the making to develop a phased-in public awareness campaign over the next few months and years. Although knowledge and services have grown significantly since my 19-year-old was younger, there remain few services for teens with autism and virtually none for adults. Until the public understands what autism is, what level of support people with autism generally need, and that these needs stretch throughout adulthood, there will be little change in the system. Appropriate services and supports must be developed for people with autism throughout the lifespan. ASEA is leading the way in making the public aware!

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President’s MessageDeborah Barrett

Recently, a couple of friends told me that if they didn’t know my son Anthony, they wouldn’t know anything about autism. I found this distressing. Because I am sensitized to autism, I seem to see lots of information, but the average person is not

aware. !e average person doesn’t know what autism is or how it a"ects a child or adult. And because people with autism do not look any di"erent (except that maybe they’re cuter), most people would not recognize a person with autism if they came face to face with him or her. Nor does the general public know the stresses and strains that having a child with autism places on the family. Children with autism generally grow into adults with autism, and the lion’s share of care and responsibility continues to rest with the family. Who but a small circle of family and friends knows?

Because of this, ASEA is taking steps to inform the public about autism. We planned a mini-public awareness campaign for late October and early November, featuring print ads created for us by Backstreet Communications. You may have

Which one of these children has Autism?

In fact, Autism Spectrum Disorder affects one in 150 people. This lifelong disability impairs the ability to talk, communicate and understand social

situations. It restricts interests and behaviours.

There is no known cure for Autism.

We need your help.

!e Autism Society of Edmonton Area (ASEA) provides support and information to parents, families and individuals touched by Autism Spectrum Disorders, as well as resources for professionals, educators and caregivers.For more information on Autism and how you can help visit autismedmonton.org Paid for by a donation from the Roy Saito !erapeutic Riding Association

Education Matters – What is Chaining?Karen Bain

For students who struggle to learn concepts and skills easily, it is common to reduce instructional tasks into small steps or discrete behaviors. For example, Discrete Trial Training, a form of instructional programming that is frequently used for students having autism, is based on directly teaching specific behaviours as responses to arranged cues and opportunities.

For engagement in the community, at home and at school, however, students must integrate various discrete responses into sequences, known as chains of behaviors, which are completed in specific sequences to perform particular tasks or routines. Examples of these chains or behavioral routines are: getting a lunch kit and going to a cafeteria; going out to recess, or preparing to go home at the end of the day. !ese chains require a sequence of individual responses in which each response in the chain cues or triggers performance of the next response in the sequence. For example, getting a lunch kit cues carrying it to a table, which cues sitting down, which cues opening the lunchkit, which cues eating the lunch, and so forth. Ideally, steps of a behavioral chain should have a functional relationship to one another and result in a purposeful goal if performed correctly. School routines necessary for social and academic participation are based on performance of behavioral chains.

If teaching is well planned, completing each step of a chain sets the occasion for the next step. Each step becomes the natural cue to perform the next step in the sequence. !e chain also involves steps of conditioned reinforcement and the potential for natural reinforcement at the end. When planning to teach a chain, therefore, the teacher must identify each necessary response, the reinforcing consequences for each response and the procedures, such as prompting and prompt fading, that may be required to teach and assist the performance of each step.

When developing instructional programs to teach chains, a task analysis may be necessary. !is process involves observing a competent person performing the task and creating an accurate list of all of the necessary steps. Depending upon the ability level of the student, the chain may be analyzed into larger

or smaller number of steps. For example, when teaching

the chain “to make a glass of juice from a powder mix”, some students may have to be taught a separate step of measuring a spoonful. Other students may not have to be taught this step, so their chain of instruction will have fewer steps. Similarly, some students may need to learn to “fill the glass to the line with water” with a fixed line on a glass as an environmental prompt; other students may already know how to fill a glass and their chain of instruction will be abbreviated. When analyzing a chain for instruction, however, all individual responses must be identified and written down.

Before instruction of a chain, assessment of each student’s ability to perform each task in the chain identifies which parts of the chain must be taught separately prior to integrating the complete sequence of steps into the total chain. !e assessment results in matching current skills and abilities with those in the required chain to select what to teach.

Teaching chains may be done through forward chaining, backward chaining, or total task training. Backward chaining involves teaching the last response to a chain first. !e teacher models performance of each task in the chain in sequence, then teaches the student to perform the last step in the chain. In subsequent trials the student learns to perform the second from the last step and the final step, progressing backwards until he or she can perform all of the steps in the appropriate sequence from first to last. !is procedure allows for maximum prompting through the first part of the routine and immediate natural reinforcement for the last step. !is procedure may be particularly useful for skills such as making a bed, where the last step is pulling the bedspread over the pillow, ending the task because then the bed is “all made”. !ese “last steps” end in reinforcement, are highly visual, and are brief.

Forward chaining involves teaching a student to perform the first step in a chain; the teacher then models performance of the remainder of the steps in the sequence. !e teacher must reinforce the student for appropriate performance of each individual step, and in the event of errors insure appropriate correction of each error.

3 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

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Autism Inside Out Why I Don’t Believe in ABAJulie Skibington Contributed by Gail Gillingham Wylie

I am 31 and was diagnosed as “high functioning autistic” in 1978 when I was two and a half years old.

Back then, high functioning autism was unheard of, and at first I was just diagnosed as being a “retarded” and “manipulative” child who should be locked up in an institution because it would not be fair to my “normal” brother to be raised with a “child like me”. My parents, recently emigrated from England, would not accept that diagnosis, since more was known about the autistic spectrum in England at the time. In fact, they were ready to go back to England and raise my brother and me there because of this.

!ere was an autism society starting up in the city I was raised in, and my parents got the name and phone number of the woman who was running it. !is place specialized in what is now called ABA (Applied Behaviour Analysis, Lovaas’ version) and would not treat anyone under the age of 6 (yes, you read that right). !ey took me in, however, and performed their treatment on me anyway. My mother also lived at this institution because she was worried about mistreatment, and because she wanted to learn how to do the ABA treatment at home. I was out of there 3 months later, doing far better than I had been before I went in.

Was it because this ABA was successful? More than two decades after I received the ABA treatment, it is now believed that the earlier one receives treatment of this type, the higher the chances of success. Now it’s rare for kids over the age of 6 to be accepted into funded programs! By the end of my ABA treatment, I was talking, doing things on my own and using words that university professors could probably relate to, but kids my own age could not. I went from non-verbal to speaking at a high school level within three months.

In total task training, students are taught to perform all tasks in the chain as each is performed in sequence. Teachers must be prepared to teach every step during every trial, resulting in more e"ort on behalf of both the teacher and the student, and possibly leading to increased levels of interfering behavior. Ideally, the greatest reinforcement should be the natural reinforcement arising from completing the task, but ongoing reinforcement throughout performance of the chain may also be required for learners who have compliance problems and short attention spans.

For students having special education needs, the beginning of a school year is a good time to consider two or three behavioral chains that may result in increased independence and participation with peers as focus goals and objectives. Students who learn functional routines and appropriate chains necessary for school involvement are more likely to be engaged with peers and reduce the need for constant adult supervision and support, but only if teaching is careful and consistent until mastery of the sequence of behaviors can be assured.

Karen.bain@epsb.ca

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Looking at my own past, one might say the ABA was successful. I don’t believe it was. Let me tell you about what happened when I moved out and lived on my own, which should explain why I am actually against ABA/IBI/Lovaas style treatments:

Sure, I was all ready. I had a college education, with a 4.0 GPA to boot, I could drive, and I had been working since I was 13. I had even lived with a few roommates and on my own.

But just before my 24th birthday, something happened to me that seems to happen to a lot of us in our early to mid twenties: the Meltdown from Hell. And, yes, I’m going to use the word “hell” because that is exactly what it was like, and I’m not sugar coating it for you. It had been triggered by an experience at an “alternative healing” clinic. !ey had done some hypnosis and planted some sort of horrible memory into my mind (this happened to three other women, as I’d find out later).

I always had digestive problems and GERD (acid reflux) that went untreated because it was considered “behavioural”. After my “alternative healing”, the acid reflux came back to bite me and let me know that it was most certainly not “behavioural”. All of a sudden, I could not even drink water because the reflux and pain were so bad. I had this taste in the back of my throat like I was drinking acid. Naturally, I could not eat, either. I dropped about 60 pounds in a matter of weeks... not healthy!

Because of this, all of those little autistic “behaviours” I had been hiding so well, because ABA just teaches a person to pretend to be normal, came crawling out of the woodwork (kinda like cockroaches when company comes over). I was having panic attacks 5 or 6 times a day. !ey would last for about 4 hours and leave me paralyzed from the waist up (that’s what happens when you hyperventilate for too long - you seize up). Lots of fun. When I could move, I was flapping, rocking and pacing around because it brought me comfort. I was scratching myself to divert the pain. I was a right old mess: I screamed, cried, howled and could not speak very well anymore.

Fortunately for me, I was hiding my autism so well that no one actually knew about it at the hospital I worked at, so it was quite a transformation for them to behold and they didn’t know what to do! !ey didn’t believe me when I told them because I “seemed so normal”. It was all an act, my dears! (I think I should get an Oscar for the 21 years of my “pretending to be normal” performance. It was truly a feat of skill which came with a heavy price.)

Two days before my 24th birthday, I was in the emergency ward, half dead, unable to move and seriously dehydrated. It was a wonder I had survived! My boss at the time, a neurologist, referred me to a stomach specialist, which is something that perhaps should have been done when I was 5 or younger! He tried his best, but he discovered another thing about me: I’m really sensitive to medications and have some bizarre reactions. !ey tried to sedate me to do an endoscopy and I blacked out (after taking a swipe at the poor guy) and had to be given the antidote or I might not have woken up. I was put on Prepulsid (now pulled o" the market) and my system was moving again. I could drink water again and take vitamins. !e vitamins restored my depleted system and I began to feel better emotionally.

I did some research (thanks to my obsession with medicine and psychology) and found a new drug for GERD that might work and had very few side e"ects. I was put on it and the GERD was finally, after 24 years, under control! I had to come o" the prepulsid because the combination of the two rendered me unable to swallow. Apparently, my esophagus had just about been burned through and it took a few years before I could eat anything more zippy than bland soup, bread and rice.

All this happened because of the following:

I thought that I had been cured, and as a result I pushed myself way too far.

childhood, blithely put o" because it was “all in my head”. (Yeah, right.) !at just about killed me.

5 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

My mother finally realizes my dietary needs (which I had to determine on my own with the help of a dietician) and finally makes food I can eat when I go over there for supper.

!at took nearly 30 years of trying to tell her, folks, which proves that autistics are not listened to even if they can talk!

- how to cope with the di"erences in my perception and how to relax myself enough to clear my mind so I could sleep at night.

I spent a lot of time when I was 24 working on myself.

I taught myself routines at night which now automatically “turn o" the racing thoughts” and put me in a state of relaxation enough for sleep. No one ever taught me that very simple little skill.

I’m still working on dealing with my dietary changes that have to happen when my body decides it all of a sudden doesn’t like what I’m eating after 2 years of being ok with it! (I know I’m not alone on this one either...I’ve heard of many other autistics needing to change their diets regularly because of this.)

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As for the panic attacks, I get them when things are wrong or I’m pushing myself too far. When things are out of whack, they happen. When I get it all sorted out, they stop.

No meds for me - remember what happened at the hospital with the tranquilizer. Apparently, my doctor knew of my weird reactions and decided that a baby’s dose of the weakest thing he could find would help. It didn’t and he got a black eye and I don’t remember any of it.

I hauled myself out of that meltdown and realized some very simple facts about myself and autism:

Autism does not go away, it cannot be cured, it cannot be “trained out”. I’m in it for life.

Autism can be a royal pain at times when my hypersensitivity gets in the way of things, but I’m hardly su"ering compared to folks with cancer, Huntington’s Disease or any number of nasty things out there!

Autism has been blessing in so many ways: I have a photographic memory, the ability to learn quickly and e"ectively, the ability to see things objectively, the ability to handle emergency situations better than most, the ability to rationalize emotionally charged things, the ability to handle pain that most folks would need medications for and (this is true) les wrinkles because I’m not prone to expressing emotion!

Autism is a part of my life, but it should not prevent me from living life to my standards

I have an extremely strong will and, because of my past, I will not accept being abused by anyone again.

Autism is not a death sentence - denying it and pretending to be normal almost was.

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7 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Sweet SleepKim Crowder

Many autistic children have trouble sleeping, thus making it di#cult for anyone in the house to sleep. What can parents do to ensure a good night’s rest for everyone?

!e first thing you should do is consult with your child’s pediatrician. It is important to rule out any physical causes and also to consider any emotional causes (i.e. major changes in family life), especially if the sleep disturbances have arisen suddenly. Nutritional deficiencies can also be responsible for disrupted sleep. Once these have been addressed, you can consider the following strategies: Implement a bedtime routine and stick to it. All children thrive on routine, especially autistic children. Have the child go to bed at the same time every night, and go through the same routine every night. !e routine should always take place in a quiet room free of distractions. Dim lighting is also helpful; install dimmers on the light switches or find alternative lighting.

Make a warm bath part of the routine. Occasionally include Epsom Salts in your child’s bath (the benefits include relaxation and detoxification). Instead of turning on bright lights, try only a nightlight, or install a dimmer on the bathroom light.

Use the same phrase to say goodnight every night (i.e. “goodnight, sweet dreams”) – it is your “magic bedtime phrase”. !e child will come to associate this with going to sleep. Use the “magic phrase” as you put him to bed, and make it the last thing you say as you leave the room.

Even if your child shows no apparent a"ection for stu"ed animals, give him one that is only for bedtime. !e stu"ed animal is a visual cue that it is time to go to sleep.

Make your child’s bedroom soothing, dark and non-stimulating. Cover the window with heavy drapes and/or blinds. Remove toys so that he has nothing to play with at night. If possible, make his bedroom for sleeping only, and set aside another area of the house for play.

Try a weighted blanket, massage, or white noise to calm your child. You may need to experiment to find out what works. Talk to your child’s occupational therapist about what other sensory strategies might also be helpful.

For the child who continues to wake throughout the night, keep the room dark and quiet. !ere should be no toys to play with, or they should be quiet and non-stimulating. If you need to check on him, do so quietly. If you can, avoid going into the room (try using a baby monitor, especially one with a camera).

Creating and maintaining a bedtime routine is probably the single most e"ective thing you can do. In fact, adults who have trouble sleeping are usually advised to stick to a bedtime routine, and also to go to sleep and wake up at the same time every day (including weekends!). It will also be easier for other caregivers to put your child to bed if they follow the routine.

You can also try Melatonin or natural remedies. As with any medication, it is a good idea to do this with a doctor’s supervision. Tell your pediatrician about all medications and supplements your child is taking, so that there are no conflicts with other medications.

It is not healthy for anyone in the family to su"er from sleep deprivation (believe me, I know!). It is important to address this. If there is still di#culty, speak to your pediatrician again. He may be able to prescribe something to help your child sleep, if you wish. Your pediatrician can also counsel you on strategies for your particular situation.

Understanding the Hyperlexic ChildCheryl Kerr

My son Gregor is four and a half years old and loves to read. Actually, he’s been reading since he was two and a half. At that time, my husband and I shared a few worried discussions about what life would be like for Gregor as a “gifted” child. !erefore, when a very close (and brave) friend of mine suggested Gregor may have ASD, I was shaken, but immediately began researching ASD on the Internet.

be used. Unfortunately, I’ve met many professionals working with ASD children who are not familiar with the term, let alone able to develop e"ective programs which utilize the inherent strengths. !erefore, I try to tactfully educate them. I suggest they read “Reading Too Soon” and purchase copies for their resource libraries. I o"er ideas such as giving name tags to other children in the classroom to help Gregor learn their names. I suggest they write his craft steps out so he can read them, helping him to remember what he’s working on.

Today, Gregor is doing quite well. His language has improved dramatically, although he still finds answering “wh” (who, what, where, when and why) questions and recalling past events extremely di#cult. His peer play is emerging, and he’s become quite good at answering common social questions. He also loves sharing Knock Knock jokes and bursts into laughter after each one. Speech therapy continues to be a priority, but he is also involved in a PUF early education program and an activity-based specialized services program. Gregor has an extensive team that works very hard for him, and he works even harder. We have nothing but the brightest hopes for his future and ours.

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As I researched, I came across the term Hyperlexia. !e more I read about it, the more I identified with the description of the syndrome and thought to myself, “!ey’re talking about my son”. Hyperlexia is often described as a precocious ability to read, far above what would be expected at the child’s chronological age, or an intense fascination with letters or numbers. Hyperlexic children also have significant di#culty processing spoken language, and display abnormal social skills. !e American Hyperlexia Association (AHA) web site (http://www.hyperlexia.org) was invaluable in helping me learn about this syndrome, as well as the book “Reading Too Soon: How to understand and help the hyperlexic child” by Susan Martins Miller. !rough these resources, I learned hyperlexia is a language disorder, not a behavioural disorder, and “developing language is the key to unlocking the hyperlexic child.” Indeed, Gregor was assessed with a severe language delay in April 2006, and speech/language therapy became our first line of treatment.

Without understanding Gregor’s hyperlexia, I don’t think I would have known how important speech therapy was going to be for us. Gregor had language (he was speaking in five-word sentences at an early age) and spoke very clearly. However, what I didn’t understand at the time was that Gregor was echolalic— that is, he wasn’t using creative language, he was just regurgitating useful phrases he had memorized, such as asking “Do you want juice?” when he wanted juice. I’ve since learned that, for Gregor, learning English is like learning a second language. !erefore, when he was first learning language, he memorized chunks of phrases and used them when appropriate, without understanding their parts. Even now, he’ll repeat movie lines when they’re contextually appropriate, or always make a request the same way.

Gregor received his ASD diagnosis in July 2006. By the time the diagnosis came, I was prepared for it, or so I thought. During the delivery of his diagnosis, the words, “autism” and “autistic” hit me like splashes of cold water. However, a glimmer of hope for me was confirmation of Gregor’s splinter skill, hyperlexia. Hyperlexic children have a learning style that, if understood and utilized, allows them to learn very quickly. !eir visual processing and reading skills are huge strengths to

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ASEA 2007 Annual Family Christmas Party

Millwoods Rec Centre Sunday, December 9, 2007

1:00pm - 4:00pm Upstairs Play Room

Please join us for a light lunch and visit from Santa! Please bring a clearly labeled wrapped gift for your child.

RSVP to the ASEA office (453-3971) no later than December 2, 2007 with the number of people attending from your family and whether you have a preference for Gluten-Casein Free food choices.

Saturday Social Inclusion Group Shannon MitchellI am writing once again in support of the Saturday night social group. As my son Drew has now been attending for about a year, I feel more confident in sharing some of the positive outcomes I have observed in my child. Over the course of the summer, as I spent more time with him in social situations, I was surprised to notice some positive impacts of the group on my child. !ese include both concrete life skills and social skills.

I have noticed that his confidence and ability in some life skills has improved dramatically. When he is out in public, he can now order food and pay for himself much more e"ectively. He knows how to use a locker at the swimming pool and asks for help if he needs it. With just a little bit of adult direction, he now expresses confidence in catching the bus, paying and transferring.

I have also noticed several social skills developing. !e first is Drew’s ability to laugh o" a certain amount of teasing and accept actions such as being splashed and dunked at the pool. !is has been a source of extreme di#culty in the past, but he can now accept what he sees as a “fair” amount of splashing and dunking in retaliation for his own splashing and dunking. He is also more comfortable getting into the water and getting his face wet.

In social situations, Drew has also started approaching new peers in an attempt to find someone to play with. He has found playmates at Let’s Play, the pool and library programming, without adult assistance. He also expresses pride when he is able to do this successfully and begins to make new friends. I am thrilled and somewhat surprised by this new development. My goal now is to build on his earlier successes by teaching him how to ask some of these new playmates if they would like to meet again and exchange some contact information.

9 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

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How to Duck a Quack: Some Thoughts on Evaluating an InterventionShane Lynch

!ere have been great advances in our understanding and treatment of Autism Spectrum Disorder (ASD). Despite the many advances, two things remain unchanged: autism is life-long, and it is incurable. Some interventions can lead to great improvements and others can actually cause harm (e.g., chelation therapy). If one types “autism therapies” into a search engine like Google, thousands of web pages appear which are informative, but can also be contradictory. !is article is an attempt to provide some perspective on the overwhelming task of sifting through various treatments in hopes of finding credible and scientifically validated interventions.

In the beginning…

When beginning your search for treatments, it is key to remember the fundamental deficits of ASD. !ere are three core areas of impairment: 1) social skills, 2) communication skills, and 3) repetitive behaviors. !at is, to receive a diagnosis of ASD, children must have deficits in the ability to relate socially to others, deficits in the ability to communicate e"ectively with others, and show an increase in non-functional, repetitive and stereotypical behaviors. Knowing this, the following questions may be asked of any intervention:

Does the intervention address at least one of the three areas of impairment?

In the past, interventions have made grand statements about what their treatments were capable of achieving. For example, there have been interventions that have claimed to be able to change the way that children processes information (visual, auditory, tactile, etc.). Such a statement is problematic because unless you have access to a Functional MRI machine, you cannot test whether brain processing has changed as a result of the intervention. If change is not observable, you are left to accept the service provider’s assertion that change has occurred.

Be wary of any intervention that claims results that generalize across areas. !e three areas of impairment in autism are extremely broad. Social skills provide a great example; there are many abilities that together result in e"ective socializing. According to the National Research Council (2001), which conducted a systematic review of published intervention research, e"ective interventions must be both focused and educational. !at is, the intervention must explicitly teach skills to improve the specific areas of impairment. For example, if Rebecca’s social impairment makes her unable to initiate social play with her peers, the intervention should aim to teach her specific skills associated with social initiation. As a consumer, if the intervention you are evaluating does not aim to teach your child specific skills, it is much less likely to be e"ective.

Does the treatment do what it aims to do?

If the intervention claims to increase a child’s skill set, the people promoting the intervention must show evidence that the abilities of children have improved. As previously mentioned, interventions must target specific skills (e.g. social initiations such as greetings). !erefore, evidence for an increase in that specific skill should be provided. If the intervention claims to increase children’s ability to initiate social contact with peers, then those who are promoting the intervention must provide evidence that the child is initiating more often after the intervention than they did before. Without such evidence, we should be skeptical of the intervention’s claims.

What evidence is used to support the claim that the intervention is successful?

Evidence can come in many forms, such as direct observations, self-reports, and anecdotal reports. Direct observation involves seeing the child demonstrate the skill first-hand. Self-report may include having the child declare that they can demonstrate the skill. Anecdotal report may include taking someone else’s word that the child can demonstrate the skill. Although self-report and anecdotal evidence are informative, they are limited in that both are open to subjective interpretation and bias. !us, anecdotal reports by themselves are not enough. Neither

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are self-reports. Direct observation, in contrast, allows for more impartial assessment of children’s capabilities. However, the strongest evidence is multiple sources of evidence. If objective, observable data is complemented with anecdotal reports and self-report information, a strong case is built in support of a particular intervention.

Further, it should be a requirement of any intervention that children demonstrate the learned skill under non-optimal, real-life conditions. If we can observe the child demonstrating the skill across people and environments, many times in a row, we have tangible evidence of the child’s progress and the intervention’s success.

How is success assessed?

!e standard in science is to identify upfront what will be counted as success and what will be counted as failure in an intervention. Further, a reasonable person should be able to see the link between how success is demonstrated and the original goal of the intervention. In the case of autism treatments, success should be measured by observable increases in children’s competence and independence. Providers of interventions should all have the same goal in mind: to work themselves out of a job. If we are e"ective, children’s abilities will be expanding and they will need less and less support over time. !erefore, success can be measured by the number of skills that children acquire, and subsequently demonstrate, independent of adult assistance.

Moreover, when an intervention can o"er evidence of observable, measurable gains in skills across many children, the intervention has more credibility. Not all children respond equally to all interventions. Children with ASD are a very diverse group. If an intervention can demonstrate that it has been e"ective with large numbers of children, we can have greater confidence that the intervention is likely to work with one’s own child. Many pseudo-scientific (that is, non-scientific)

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interventions that do not have observable, measurable evidence for large numbers of children often o"er testimonials or anecdotes for the intervention’s success. Although these tales are engaging and compelling, small numbers of success do not provide good evidence that the intervention will work for others. Consider what personal stories and intervention failures you are not hearing about. Similarly, be skeptical of interventions that use scare tactics. !ey o"er unrealistic and fearful scenarios, rather than logic, as evidence of what could happen if you do not try their intervention.

Lastly, how do we know the e"ects are due to the intervention? Have those who are promoting or studying the intervention considered alternative explanations like placebo e"ects or unintended causes? For example, any child participating in a structured intervention program is expected to show improvements over time. However, general improvement over time is not, itself, evidence that the intervention is responsible for the gradual change. Ask yourself, what else might account for the intervention’s success? !e very best research that evaluates interventions uses comparison groups to help rule out other explanations or determine whether the intervention is better than other interventions.

In the end…

It is very important that consumers of interventions seek the strongest possible objective evidence of an intervention’s success, because our initial impressions color what we see. When we look for positives, we see positives. When we look for negatives we see negatives. No intervention is above criticism. Be skeptical. Your child is worth it.

To be continued…

Shane Lynch Doctoral Student Department of Educational Psychology University of Alberta

How Early Can We Identify Children with Autism Spectrum Disorders?Wendy Mitchell

!ere is evidence that intensive, specific interventions initiated early in life can markedly improve outcomes for children with ASD. !is evidence has led families, clinicians and researchers to advocate for earlier diagnosis of ASD. Some professional groups have recommended universal screening for ASD, to take place as early as 18 months of age. In Alberta, there is a new initiative to implement community-wide developmental screening for 18-month-olds in a number of test sites. Although this initiative does not focus on ASD specifically, some children identified with developmental delays may be showing early signs of ASD. It is important that we are able to recognize these signs so that diagnostic assessment can happen as early as possible, and so that children with ASD (and other developmental di"erences) can receive the appropriate supports and interventions.

Dr. Lonnie Zwaigenbaum, Co-Director of the Autism Research Centre at the Glenrose, has experience with a unique ‘high-risk’ group of infant siblings of children with ASD. Dr. Zwaigenbaum’s study monitors the development of young infants from 6 months of age in an e"ort to develop a better understanding of the early signs and developmental patterns associated with ASD. Over the past 5 years, Dr. Zwaigenbaum and his collaborators have used standardized assessments and play situations to learn more about how children at risk for ASD use toys, think, communicate and relate to other people.

Results thus far suggest that by 12 months of age, children who are later diagnosed with autism show decreased eye contact and social smiling, do not consistently respond when their name is called, show less interest and positive emotion during social interactions, and tend to visually fixate on toys and other objects. Dr. Zwaigenbaum indicated that there is a remarkable consistency between the behaviours that infants display during study visits and the behaviours that their parents report on the questionnaires. Surprisingly, the research has found that these behaviors are not obvious to us (or to

parents) during the first study visit at 6 months, but appear to only emerge and/or progress between 6 and 12 months. Dr. Zwaigenbaum and his collaborators were the first group to report this observation, but many other researchers following infant siblings of children with ASD are noticing the same pattern.

Data from the Infant Sibling study has also found that children with ASD whose language and intellectual skills are in the average range at the time of diagnosis have early signs that are more di#cult to detect. In fact, this group, despite our best e"orts, is less likely to be diagnosed before the age of 3 years than children who are more developmentally delayed. Learning more about early signs in children with ASD in this higher functioning group will be very important, as we want to make sure that all children on the autism spectrum are diagnosed as early as possible. Dr. Zwaigenbaum stresses the need for screening for early signs of ASD at several time points, and that there should be a focus on early initiation of child– and family–centered interventions targeting specific functional concerns.

If you would like to learn more about Dr. Zwaigenbaum’s research or studies currently being conducted at the Autism Research Centre, please contact Wendy Mitchell at 735-8283 or at Wendy.Mitchell@capitalhealth.ca

Person Centered Planning Workshop – An Eye Opening ExperienceKaren Phillips

During the first week of October I attended, on behalf of ASEA, the first week of a “mind altering” workshop on Person Centered Planning. !e thirty participants for the workshop work for service agencies, government programs and support/advocacy agencies. Ten individuals with developmental disabilities, including autism, volunteered to work with teams of three workshop participants to have a person centered plan developed for and with them.

!e idea of Person Centered Planning is that all plans, decisions, arrangements and activities are based on what is

12

13 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

in the best interest of the person being planned for– in our situation, the adult with an Autism Spectrum Disorder.

As I read and took notes on the forty-five articles I needed to read before the course started, I realized that Person Centered Planning was a common sense approach that we should all be using. I assumed that Person Centered Planning would be widely used in the adult service system. I had heard it mentioned often, even though I have not had a lot of dealings with the adult system— at least not yet.

What really turned out to be “mind altering” for me were the real life situations of the volunteers which we discussed during the first week of the workshop. I realized, to my surprise and horror, that decisions are often made with little thought to what is best for the individual with autism. Instead, decisions are often based on the best interests of others, such as:

happy, and who are having trouble finding sta"

and some people and not others

autism, and who simply use the parenting practices they grew up with when working with autistic individuals

o" in opposite directions

What became apparent to me is that really bad things can and do happen in the adult service system: life threatening things, morale-killing things, things that drive families away, things that cause the behavior of the Autistic individuals to deteriorate alarmingly, and things that cause autistic people to retreat further into themselves.

As I participated in the discussions and learned about the life situations of ten di"erent adults who are involved in the adult

service system in Edmonton, I was filled with dread. I realized that this situation just isn’t acceptable.

I understand that I may have been naïve: among the other people who participated in the workshop with me, those who had worked in the adult system seemed aware of the many shortcomings of the current system.

I can’t help wondering how many parents have had terrible experiences with the adult service system as they try to help their loved ones make a better life for themselves. On the other hand, are there also parents who have had good experiences as they have worked with service providers, professionals, and government programs?

Based on what I have learned and heard during the first week of this two week workshop, I feel the need to issue a few warnings:

child. Drop in regularly and ask others to help you so that you can check more often

are o"ered

child, and keep the interests of your child front and centre at all times

Stay I)v?6ve8

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Outstanding Volunteerism Award- Betty McGrathBy Anita Ferri

!ere are volunteers, and then there are outstanding volunteers. !is year’s “Opening Doors” Gala Dinner and Auction was an outstanding event that was put together almost entirely by volunteer e"ort— and believe me, we appreciate every contribution, as putting together an event of this caliber requires a wide variety of talent and input.

Every now and then, there are those who stand head and shoulders above the rest in terms of their commitment, dedication, and sheer numbers of volunteer hours.

For the past four auction events there has been an amazing husband and wife team who have made an outstanding contribution in a very critical behind-the-scenes role that begins months before the event. Don and Betty McGrath have taken on the inventorying and management of the payment systems for our donation items, as well as recruiting and coordinating a team that includes dozens of their family and friends to assist them (and us!) with that task. It’s not often that the volunteers bring their own team of volunteers, but with Don and Betty, that’s the kind of commitment they and their wonderful group of family and friends have made. In July 2006, we were all deeply saddened when Don suddenly passed away. Don’s lovely wife Betty, his family, and his friends decided after his passing that they would dedicate their volunteerism at the next Autism Gala to the memory of Don.

One of my regrets is that each year when I would thank Don for his help, and he would be too busy working to hear that appreciation. !is year I was delighted to be able to dedicate the volunteer work of the event to Don, and to present to Betty

an award for her work. Betty has, in her own right, helped us to elevate this year’s event and put in more volunteer hours than almost anyone else on the committee. It became like a second full time job for her! When we look back on the phenomenal success of this event, those of us working to put it together know how deserving Betty is of this award.

Warmest thanks to you, Betty, from all of us at the Autism Society. I know Don would be proud. The Gino Ferri Community Builder Award By Deborah Barrett

You’ve probably all heard the saying “it takes a community to raise a child”. For those of us who have raised children, we know how true that is. But when your child has autism; when your child does not perceive the world

in the same way as most others; when your child cannot speak or communicate clearly and doesn’t know how to engage with others; when your child cannot keep himself safe, not even when he becomes an adult, community is not always there. Sometimes community has to be created both for the person with autism and for family members, who may be so consumed by caring for the child and keeping him or her safe and healthy that they cannot reach out to others.

Community needs to be built. It needs to be built by someone who has the eyes to see the need, the heart to feel it, and the will to take action. It needs to be built by someone whose generous spirit guides him or her to make connections in the community that draw attention to the needs of individuals with autism and their families. It needs to be built by someone who will use his talents and connections to create support for all people a"ected by autism.

Opening Doors Gala Special Feature

Opening Doors Award Recepient: Dr. Keith GouldenBy Deborah Barrett

If you take a look at the cover of tonight’s program, you will see a picture of a door slightly open, with the light coming through. It is a symbol both for our Gala Event and for one of the Autism Society’s most prestigious awards – the Opening Doors Award.

It’s the light coming through that inspires us and leads us to new

opportunities, new discoveries, new hope, even new life. But when a child is first diagnosed with autism, the family’s world often turns bleak and grey. To the family, it feels as if the doors of hope, dream, and ambition have been closed, the doors to living a normal life slammed firmly shut.

Since 1992, Dr. Keith Goulden has been opening doors for parents whose dreams have been shattered. His appointment to the Glenrose Active Care sta" and as Associate Professor of Pediatrics at the University of Alberta, brought Edmonton a pediatrician with expertise in the field of autism and a deep commitment not only to the care of children with autism, but also to the well-being of their families.

15 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

!is year, the Autism Society is introducing a new award to honour those who have worked hard to build community for people and families who have felt autism’s touch. Our first recipient of the Community Builder Award used his experience on volunteer boards at the YMCA and Alberta College to help the Autism Society of Edmonton Area develop an e"ective parent-led, grassroots board. He spent 12 years on the Autism Society board, with 3 years as president. Not only did he serve locally, he also set his sights on reviving the Autism Society of Alberta, which had been defunct, to create a provincial voice capable of bringing matters to the attention of government.

But his e"orts did not stop there. !is year’s award recipient used his connections in the construction and engineering fields to build community awareness in circles that may not otherwise have come in touch with children and families living with autism. For the past six Galas, he has been responsible for the majority of ticket sales and more than half of the donations of auction items. He has, in fact, been responsible for at least half the funds these events have raised. In addition, he makes himself available to current board members for advice and guidance and continues to support ASEA events. And, through this all, he maintains a close and supportive relationship with his grandson, who has autism. We cannot think of a more deserving recipient. !is year, the Autism Society is proud to name our new Community Builder Award in honour of its first recipient, Mr. Gino Ferri.

Opening Doors Gala Special Feature

Over the years, Dr. Goulden has contributed to the expansion of knowledge in the field of autism, and he has worked hard to ensure services have been extended, not just to pre-schoolers, but to people with autism throughout the school years. He has been involved in outreach to schools in the Edmonton area and travels from Red Deer to Fort McMurray to see children with autism spectrum disorders and their families. He is the member of more autism societies than most of us knew existed.

Since Keith was invited to study autism many years ago, he has been fascinated by the way people with autism think and perceive. But it’s his compassion for families and children that really opens doors. For Keith believes that, despite the diagnosis, families need not only learn to cope, they can learn to thrive. He goes above and beyond to provide support for families, even to the point of helping one mother who called him at home on Christmas Eve. Her child was agitated and had not slept for several days. He was showing all the precursor signs of a major epileptic episode, which would have resulted in a sad and anxious Christmas for everyone. Dr. Goulden not only listened, he prescribed and ordered medication, and helped the family determine an emergency action plan to deal with the behavior. !is is not an isolated incident. Dr. Goulden has been a safety net for many, many families. His compassion extends even further, though, to continuing to lend support to families whose children have crossed the boundary into adulthood. Dr. Goulden continues to work for the extension of services and networks of many kinds so that adults with autism can continue to learn, to grow and develop, and to live better, fuller lives.

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When a pediatrician’s commitment to kids with autism and their families is as strong as Keith’s, it gives families the courage to find creative solutions and to seek community partners to ensure that each of us lives good and fulfilling lives. When faced with the challenge of autism, a dedication such as Dr. Goulden’s goes a long way toward opening doors and admitting light.

!is evening, it is for his steadfast support, his ongoing commitment, and his belief in people with autism, and his faith in their families, that the Autism Society of Edmonton Area is delighted to present Dr. Keith Goulden with this year’s Opening Doors Award.

Opening Doors Gala Special Feature

Grant Kurtz, a non-verbal teen with autism, presents the Opening Doors Award, an oil painting by Grant, to Dr. Keith Goulden.

Gala Volunteers Betty McGrath - Event Volunteer Coordinator Rotarian Larry Johnson - Receipt System Coordinator Albert, Manny Albert, Pam Antulov, Christina Antulov, Matia Bautista, Amy Benner, Ruth Bourne, Amy-Lynn Boychuk, Mary Bulger, Trent Ferri, Gina Patti Fisher Fleming, Rick Fleming, Shirley Friedentahl, Heather Hanson, Sabrina Huedepohl, Josephine Jardine, David Kopchia, Roger L’Heureux, Dora Ludwig, Jason Maskoske, Warren Matras, Tom Matras, Yvonne McGrath, Dawna McGrath, Geo" McRitchie, Rob Miciak, Jackie Mikaluk, Bill Milton, Cathie Nalesnik, Debbie Nalesnik, Matthew Parker, Nicole Parker, Wayne Plante, Carmen Ross, Linda Ryan, Jackie Steblyk, Peter Steblyk, Steve Stroyek, Gloria Sveinunggaard, Sandra Tellier, Shayla Wilkie, Trent

Sincere thanks to !e Rotary Club for sponsoring the receipting process

17 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Special Thanks Design Backstreet Communications

Poster, Ticket Printing McCallum Printing Group Inc.

Program Printing Swarm Enterprises

Linens Canadian Linen and Uniform Service

Wine & Champagne Liquor Depot

Flowers Flowers by LaTerre

Chocolates Purdy’s Chocolates

Violinists Desha and Evannia Miciak

Keyboardist Scott Jessey

Dinner Music Ancora

Special thanks to Chris Lachance (owner of Lux Steakhouse and Bar and Century Grill) for making ASEA his charity of choice!

!e Autism Society of Edmonton Area would like to thank Anita Ferri and Lyn Parker for their marvelous e"ort in coordinating and directing all aspects of our very successful Opening Doors Gala!

Thank you to all our Gala supporters!Master of Ceremonies, Auctioneer Danny Hooper

Honorary Event Chair Mike Lake - MP Edmonton-Millwoods-Beaumont

Gala Committee Chairs Anita Ferri, Lyn Parker

Presentations Dr. Deborah Barrett President, Autism Society of Edmonton Area Terry Harris Vice President, Autism Society of Edmonton Area

Century Hospitality Group - on your generous donation of $5000 2007 Opening Doors Award - Dr. Keith Goulden 2007 Community Builder Award - Mr. Gino Ferri

7-DAY CARRIBEAN CRUISE FOR TWO (Value: $3500) Provided by

Gala Media Support

Bow Valley Ford Ltd.Brazilian Co"ee IncBrazzo Contractors Ltd.Brine, PatriciaBrock White Construction Materails.Brown, Holly & BrownBrown, Ms AnneBuild-A-Bear WorkshopBuilding & LandCameron HomesCanadian Curtains CorporationCanadian FreightwaysCanadian Linen & Uniform ServiceCanadian Tire - St. AlbertCanterra Suites HotelCapital Packers Inc.Casino Yellowhead/Edmonton Century hospitality GroupCenturyvallenChicken ScratchChomiak CharolaisChomiak, JohnChristenson & Mclean Roofing Ltd.Cineplex OdeonCity FurnitureCity of Edmonton City of Edmonton, Community ServicesClark BuildersClub FitCoast Paper Ltd.Coca-Cola Bottling Ltd.Collin SteelComfort Dental CentreCompany’s ComingCon Boland PhotographyConroy RossCookies By George Inc.Cooper’s Cove GuesthouseCopper Coast ResortCorporate ExpressCottswood InteriorsCouncillor Jane Batty Councillor Janice MelynchukCouncillor Karen Leibovici Councillor Kim Krushell

Councillor Ron HayterCouncillor Terry Cavanaugh Cowan Graphics Inc.Creative Co"ee ServicesCreative Door Services ltd.Creative Packaging Crestwood ApothocaryCrown Plaza - Chateau LacombeCushman Wakefield LepageCW Hill PhotographyCycle SportsCycle Works MotorsportsDecore HotelsDelcon ConstructionDelcor Painting & FlooringDel’s On 9thDelta Bow Valley Hotel, CalgaryDemuth, Denise & Delvin Derks FormalsDesco Coatings of Alberta Ltd.Diagold Designs Ltd.Diggs HoldingsDispensaries (1991) LtdDriving ForceDucks UnlimitedEBA Engineering ConsultantsEdmonton Area Super Novice Hockey ClubEdmonton EskimosEdmonton Oil KingsEdmonton Oilers Community Fdn. Edmonton Rush LacrossEdmonton SunEdmonton Symphony OrchestraElysiumEner-Tech Industries Alberta ltd.ETS EdmontonEye C Custom Picture FramingFairmont Jasper Park LodgeFamous Toy Liquidators Ltd.Fantasyland HotelFero Engineered MasonryFerri, AnitaFerri, Carole Ferri, GinoFerri, TeresaFlowers by LaTerre’sFlowers By Merle Ltd.Focus On YouG. Albi Studio

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OUR GENEROUS DONORS 790 CFCW News Cap Radio A & E Architectural A Clark Roofing & Siding Ltd ABAL Building Products Academy Dental Group Ltd. Ace Limousine Adamas Goldsmiths After 8 Catering Akers, George H Alaura Artworks Alberta Ballet Alberta Blue Cross All About Cakes All Fences Rental All Glass Parts All Tucked In All Weather Windows Allegro Italian KitchenAnimal Quilts by SallyAntulov, ChrisArt Beat GalleryASEAAshmore, JeanAudrey’s Books Ltd. Auto Details by Desmond RossAvanti’s Hair & Body StudioAvison Young Badger, TerryBan" Lodging CompanyBarrett, Dr. Deborah Beaubien Glover Maskell EngBeauty !erapyBella Vanti HairBernard Callebaut ChocolaterieBest Buy Canada Bird ConstructionBirks & SonsBistritz, Dr. L.R. Blanchett Neon Ltd.Blue Sky LimoBlu’s Women’s WearBoersma, PatBooks Are Fun Ltd.Boothby, Joanne Boothby, MichaelBoston PizzaBouseqult, Jan

Gateway MechanicalGG CompanyGlendale Golf and Country ClubGold Dust CasinoGolden West Golf CourseGreyhound CanadaGritty Grotto BooksGuenter, Heather Guenter, WayneH.I.P ArchitectureHairline InternationalHarle-Johnston, ValHarvard Developments Inc.Hatzinikolas, Dr MikeHaweli East Indian CusineHawkeye, Penny & JoeHeart Kitchen & Bath IncHeenan Blaikie LLPHemisphere Engineering Henry Singer Fashion GroupHesco Hotel Equip. & Supply Co. CompanyHines, PattyHirst, BarbaraHole’s Greenhouses & Gardens Ltd.Home DepotHSBC Bank of CanadaHudson Canadian Tap houseIkon O#ce Solutions, Inc.Il Forno RistoranteItalian Centre Shop LtdJ Ennis FabricsJ.R Golf CourseJ.T Moland Insurance ConsultingJasper Park LodgeJoey TomatoesJoey’s Grill and LoungeJohnson, Malcolm June Warren Publishing Ltd.Junque CellarKamena Kallery Kates, Steve & JoyKatz GroupKeg n Cork Liquor Company Ltd.Kelowna Rockets Hockey clubKuhlman’s Market Gardens & GreenhouseKurtz Kards IncLaChance, Chris Lake Louise InnLaurie Greenwood’s Volume II

Wasnea Mah Engineering Ltd.Watts, AlfredWendy Y Coburn Professional CorpWER Foundation Specialists Ltd.West Edmonton MallWest JetWestcorp Properties Ltd.Western Moving & StorageWestin CalgaryWestin EdmontonWilson, Dave Wilson, Scott & CathyWine About ItWok & Go Express Chinese FoodWong, Willie YMCAYMCA Castle DownsYuk Yuk’s

Lazy BoyLe Centre Sheraton MontrealLife Skills CollegeLifeStyles Signature CollectionLinda Cameron Braided TextilesLiquor DepotLouie Eyecare CentreLRI Perforating System IncLudlow, Phyllis Mabbe. AlanMaclab EnterprisesMariette Holdings Ltd.Martin EquipmentMaskoske, Jen & Warren Master CabinetsMaxric HotelMayor Steven Mandel McBain CameraMcDonaldsMcFarlane Group Ltd.McGrath, BettyMcKay, ShannonMcLean & Shaw Insurance IncMedia PlusMHK Insurance Inc.Miciak, JackieMikaluk, BillMitchell Renovation Ltd.MLC Creating CommunitiesMorie Promotional GroupMotif ConcreteMP T-ShirtsMusty PuttersNaqvi, Cameron & SarahNaqvi, Jerry & HenriettaNaqvi-Rota, Tina National Bank FinancialNational LeasingNelson LumberNew York RangersNicholson Chev OldsOcean SportsOndrack, EstherOPMParker, Lynn Paull TravelPCL ConstructionPearn, Perry

Sokil Transportation GroupSorrell FinancialSorrentino’sSouth Edmonton CommonSparky’s Electrical Services LTDSpecial OlympicsSpecialty Installations Ltd.Sportsworld Inline & Roller DiscoSteblyk, PeterStedelbauer ChevroletSterling CraneStone, DianeStuart OlsonSuede LoungeSupreme BasicsSynergy Projects Ltd.T K Clothing Company Ltd.TD Waterhouse Investment AdviceTelsco Security Systems Inc.Telus World of Science!e Arden !eatre!e Book Fair Co.!e Citadel !eatre!e Creperie!e Fit Firm Inc.!e Gem Gallery!e Grill - Comfort Inns!e Keg Steakhouse & Bar!e Westin Calgary!e Westin Edmonton!omas St. Laurent, Janet Tim HortonsTiny LambsTR Com ServicesTwin City Excavation Ltd.Twin Willows Golf ClubTyson’s ConstructionUkrainian Cultural Heritage VillageUrban BarnVacation Homes RentalsValley ZooValpak of EdmontonVestate MouldingVoice Construction Ltd.W Hotel MontrealW&R Foundation Specialists LtdWaiward Steel Fabricators Ltd.Wallace, DawsonWallace, MaureenWallace, Wayne & Noreen

19 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Peterson, Penny Petrin MechanicalPetro Canada Real EstatePhillips, Karen and Kent Pilot Shipping Ltd.PMO ConsultingPolycore Canada IncPorcura DevPossAbilitiesPowercomm IncPremier Ed Stelmach & Mrs. StelmachPrinting Impressions & Graphic InkPrints GaloreProtraining.comPurdy’s ChocolatesQualico GroupQualiglassQualimet IncQuinan, Joanne R&T Electric Services Ltd.Read Jones Christo"ersenReburn, DavidRed Heron Essentials Design IncReid Built HomesRexallRobertson PhotographsRota, Aliya Rota, MatteoRota, SofiaRota, TonyRoy, PhilRoyal Glenora ClubRoyal Lepage Noralta Real EstateRT.R Com Services Inc.Sawridge Inn & Convention CentreScotiaMcLeodScott GallerySDI Digital ImagingServus Place - St AlbertShambles Gift ShoppeSheraton MontrealSherrick Management Ltd. Shopper Drug Mart - St. AlbertShoppers Drug Mart - St. AlbertShtabsky & Tussman Sicilian Pasta KitchenSkakun, Casey & AlexanderSmooth & Silky Inc.Snow Valley

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and surrounding areas, as well as links to some great mainstream community resources.

Hubert H. Humphreys once said, “the impersonal hand of government can never replace the helping hand of a neighbour.” Community Connections is here to help you engage your neighbours.

For more information on Community Connections, please contact Kara Murray at 454-0701 ext 232 or kara.murray@gatewayacl.org.

GAPS Supported Community Inclusion Project – Asperger SyndromeKaren Phillips Some months ago I reported on a project being undertaken by the Autism Society related to the needs of young adults with high-functioning autism or Asperger Syndrome.

!e initial intent of the project was to provide employment assistance for individuals with ASD. !e Autism Society ran a small supported employment pilot project in the summer of 2005 and hoped to acquire funding to run a larger program. Finding funding for the project proved to be a challenge, and the funder for the project, Seniors and Community Supports, stipulated that funding for the project was dependent on partnering with other disability organizations. In addition, it was recommended to the Autism Society that we look at developing a resource to be used by organizations that would be providing services for young adults, rather than providing these services ourselves.

!us began the research and development of the resource which, I am pleased to announce, has been printed and is now ready for distribution. !e title of the resource is:

Asperger SyndromeFetal Alcohol Spectrum Disorder!e Adult YearsHelping Front Line Sta" and Parents

Community Connections Offers Help for Adults with ASDKara Murray

According to the Canadian Association for Community Living, fifty percent of people with developmental disabilities are interested in becoming more involved in their community. !ese same individuals are four times more likely than other citizens to be excluded from social activities and community involvement. In order to address the needs and interests of these individuals, Gateway Association for Community Living developed a service called Community Connections.

!e purpose of Community Connections is to help bridge the gap between adults with developmental disabilities and mainstream social groups, leagues and teams, creating the opportunity for individuals to develop relationships with other members of their community. !ese mutually beneficial relationships serve to enhance the quality of life for people with developmental disabilities by allowing them to be active in their community, and to develop and expand their interests and skills.

Community Connections is available to assist in making this process easier. Taking into account an individual’s interests, we research and liaise between community social groups, the individual, and the individual’s support network in an e"ort to establish social connections that appeal to the individual. We also work directly with community groups to help them accommodate people with disabilities and to educate them on the benefits of inclusion. We do not, however, o"er sta#ng supports.

Currently, we are working on promotional materials that will provide people with disabilities and their support networks tips and strategies to making e"ective connections with mainstream groups. We are also developing informational materials for community groups to assist them in adopting inclusive practice. !ese materials will soon be available on our website, www.gatewayacl.org. !is website will also provide information on upcoming community events in Edmonton

21 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Upon the recommendation of the Advisory Committee for the project, the resource was developed to be helpful for both parents and front line sta" as they, in turn, go about helping and supporting young adults with Asperger Syndrome to enter and participate in the social world.

!e book is written in plan language and illustrated with amusing cartoons. At the end of each chapter are examples of problem situations with recommendations for how to help.

!e book addresses the following topics:

Line Workers and Parents

!e book is accompanied by an assessment tool, called !e Operator’s Guide, which can be used by or together with individuals who have Asperger Syndrome.

A workshop will be held on November 27th, as part of our Parent Information Series, to talk about the book and how it can be used by parents or front line sta" to assist individuals with Asperger Syndrome.

Copies are available at the Autism Society o#ce (#101, 11720 Kingsway Avenue) for the cost of printing them, $25.00 (includes book and assessment tool), plus shipping. !e book will also be available through the Autism Society web site at some point in the future.

We are very excited about this resource, and during the next year we will be promoting and discussing it through a series of workshops for parents and community service providers. If you

know of anyone who may be interested in learning about this resource, please contact me at karen.phillips@shaw.ca.

High Functioning Autism/Asperger Syndrome Parent Support Group

!is group gives parents of children on the high-functioning end of the autism spectrum the chance to share common experiences, listen to speakers and share resources. Group meetings may have di"erent focuses, including support for parents and families, advocacy within the school system, the adult system, or sharing information about upcoming workshops, books, and educational or government initiatives. !e group deals with some of the tough issues associated with raising a child who has high functioning autism, but also celebrates the successes and joys.

Meetings are held at the Autism Society O#ce, 11720 Kingsway Avenue (or as advertised), on the third Wednesday of most months, from 7-9 PM. Upcoming meetings will occur on the following dates:

Wednesday, November 21st, 2007Wednesday, December 19th, 2007

Wednesday, January 16th, 2008Wednesday, February 20th, 2008

For more information, please contact Lyn Parker at 413-0518.

l<?;&ng @*AB$r8

Interactions Program at Belmead SchoolTreva Lunan

Belmead is one of many schools within Edmonton Public that has an Interactions Program as well as regular elementary classrooms. !e

Interaction Program provides a special classroom setting for students who have the diagnosis of Autism Spectrum Disorder (ASD). !ere are approximately 20 students with an ASD diagnosis attending Belmead. A few of the students diagnosed with ASD are now in full integration, while the rest spend the majority of their day in one of the two special classroom settings. !e Interaction Program provides a high sta" to student ratio and a small classroom size. Sta" in the Interaction Program have training and experience working with students who have ASD.

Programming for students in the Interaction Program is based on each child’s individual needs and capabilities. An emphasis on communication, social skills and appropriate behaviour is important to our program because students with ASD typically struggle in those areas. Other programs focus on academic and/or functional life skills, depending on the level of the individual student. We also like to give students as many experiences as possible to practice safety skills, mobility and orientation in our community.

We are very excited to welcome students back to school this fall and look forward to a very rewarding year together.

1st ANNUAL Children’s Autism Services of Edmonton Conference

Marriott at River Cree Resort, Edmonton January 31st-February 2nd, 2008 Keynote Speaker: Dr. Barry Prizant

Dr. Prizant has more than 35 years experience as a clinical scholar, researcher and international consultant to children and adults with Autism Spectrum Disorder (ASD) and their families. He has published more than 95 articles and chapters on autism spectrum disorders and pediatric communication disabilities, serves on the advisory board of six professional journals, and has presented more

than 500 seminars and keynote addresses at national and international conferences. He is a co-developer of the SCERTS model for treating ASD.

For more information about Dr. Barry Prizant and the SCERTS Model see www.barryprizant.com.

For more information or to register for the conference, visit www.childrensautism.ca

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Advocating for Your ChildKim Crowder

On Tuesday September 18th, a Parent Information Night was held at a south side Edmonton church. !e topic was “Advocating for Children with Autism”. Our speaker was Roma Kurtz, mother of two non-verbal, low-functioning teenage boys.

Roma began her presentation with a reading of “Welcome to Holland” in order to convey a sense of what life is like for the parent of an autistic child. If you are not familiar with the story, it is easy enough to Google it on the Internet and find it.

Roma suggested that our most important communication tool could be a Picture Book History. !ose of you who enjoy scrapbooking will be right on board with this idea! !ese lovely (and thick!) albums chronicle her sons’ lives. She has photos of her boys enjoying leisure activities and trying new things; she suggests that you include report cards, art work, and anything that is important to you or your child. We were able to get a good sense of what her boys are like just by flipping through these albums. !e albums, for example, can be used to show that the child is capable of more things than a teacher might think, or is normally more active and alert than the doctor might assume.

Inclusion in school was a primary topic of discussion. In the early grades, special needs children are often celebrated in the classroom and are well-accepted by their peers. !ere are many ways in which they can participate with the other children, even if it means making modifications in order for them to do so. A shift in the dynamics of interactions with peers happens in the older grades (high school), but Roma’s experience is that it is not necessarily a bad change, just a di"erent kind of interaction with friends. It can be valuable to have both special needs friends and “neurotypical” friends. Special needs friends can give a particular sense of belonging for your child. Everyone likes to hang out with people who are “the same” – there is a certain sense of camaraderie and belonging when you are with those people. Roma has always taken an active role in facilitating get-togethers with her sons’ peers.

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Anonymous – In honor of Becky & Arnold Prochnau (via Canadahelps.org)

MEMORIAL DONATIONS

Anonymous – In memory of Brenda Ayotte (via Canadahelps.org) Carmen Wyatt – In memory of Morris & Carolyn Shaw Barb Williams – In memory of Carolyn ShawColleen McGhan-Cox – In memory of Carolyn ShawJeanne Shaw – In memory of Carolyn ShawCecil & Myrtle Pallister – In memory of Carolyn ShawBentley School Sta" – In memory of Morris & Carolyn ShawArt & Sharon Breitkreuz – In memory of Morris & Carolyn ShawSuzanne Hayden – In memory of Morris & Carolyn ShawMarjorie & Irvine Marshall – In memory of Morris & Carolyn ShawEilert & Jessie Rebne – In memory of Morris & Carolyn ShawKaren & Mark Wyatt – In memory of Morris & Carolyn ShawWilliam & Ruth Wyatt – In memory of Morris & Carolyn ShawMargaret Shupe – In memory of Morris & Carolyn ShawDr. Deborah Barrett – In memory of Morris & Carolyn ShawMargaret Marshall – In memory of Morris & Carolyn ShawMark & Joan Ree – In memory of Morris & Carolyn ShawBeverly & Alfred Craig – In memory of Bill and Vesna MinorRay & Murielle Provencher – In memory of Tim and Kim Nerbas

Your generous donations make ASEA’s work possible!

23 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Please return your completed form and/or donation to:

AUTISM SOCIETY OF EDMONTON AREA#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

24

We talked about the importance of considering your child’s strengths and interests when choosing goals. !is is your starting point for choosing goals that are motivating and achievable. Also, think about what the things are that you value the most. For example, if you value friendships above all else, you would choose goals that will help your child build friendships. Roma also showed us a “Vision Statement”, in which she very clearly specified what she wanted her son to experience and gain from his year in school, as well as the things she did NOT want to happen. !is also helps to set goals and gives ideas for what activities to schedule in the child’s day.

Roma shared with us a wonderful Power Point presentation that she created as a method of introducing her son to school sta". She emphasized the things that he enjoys and the idea that regardless of his challenges, he is still a person with feelings – which she underscored with lots of great photos. Something that I thought was really interesting in this presentation was a slide she called a “Character Pie”. A circle divided up into many pie slices helps to describe her son. Only one slice of the pie was given to his autism diagnosis (and any other diagnoses or challenges). All other slices of the pie identified an interest or strength. I think it is very meaningful that Roma allowed only one small slice of the pie to identify her son as someone with a diagnosis. Although it is part of what makes our children who they are, it is not the only thing that defines them. Our children are also people with feelings, abilities, strengths and interests.

Events at a GlanceNovember 2007Wednesday November 7, 7:00pmParent’s Time OutCall the Autism Society of Edmonton Area(780)453-3971.

Tuesday November 20, 6:30pmTeacher Information NightCall the Autism Society of Edmonton Area(780)453-3971.

Wednesday November 21, 7:00pmAsperger’s Parent Support GroupCall the Autism Society of Edmonton Area(780)453-3971.

Tuesday November 27, 7:30pmParent Information NightCall the Autism Society of Edmonton Area(780)453-3971.

December 2007

Wednesday December 5, 7:00pmParent’s Time OutCall the Autism Society of Edmonton Area(780)453-3971.

Wednesday December 19, 7:00pmAsperger’s Parent Support GroupCall the Autism Society of Edmonton Area(780)453-3971.January 2008January 7th-9th, 2008University of San Diego Winter Autism Conference – Beyond “Behaviors”: Supporting Confidence, Competence and Image. For information or to register, visit www.sandiego.edu/autisminstitute/.

January 31st-February 2nd, 20081st ANNUAL Children’s Autism Services of Edmonton ConferenceRegister through Children’s Autism Services of Edmonton (780) 487-9467

Thank you to our newsletter contributors!

Chris Antulov Shane LynchKaren Bain Wendy MitchellDeborah Barrett Kara MurrayKim Crowder Karen PhillipsAnita Ferri Julie SkibingtonCheryl Kerr Gail Gillingham WylieTreva Lunan

25 AUTISM SOCIETY OF EDMONTON AREAwww.autismedmonton.org

Early diagnosis is essential if people with autism are to achieve full potential. It is only when their disability is understood that they can be helped to maximize skills and minimize problems.

Difficulty with social relationships

Difficulty with verbal communication

Difficulty in the development of typical play

Resistance to change in routine

Extreme responses to sensory stimulation

Autism is: These figures illustrate some of the manifestations of autism. Not all persons with autism experience each of these symptoms and they vary in severity.

6&f# C&tD A-./01F$66&ng &)t+ A-.-E,

26

2007 MEMBERSHIP APPLICATION1. THANK YOU FOR YOUR ASEA MEMBERSHIP Thank you for joining ASEA or renewing your membership for 2007. Membership fees contribute directly towards the Society’s ability to provide

informational resources and services to families and professionals who support individuals with Autism Spectrum Disorders. We have adjusted our 2007 fees for the first time in 8 years to more accurately reflect the value of membership and improve membership benefits in the coming months.

2. NAME & CONTACT INFORMATION All information gathered will not be sold, traded or used for any purposes not directly related to ASEA

Dr. / Mr. / Mrs. / Ms. (First) ________________________________________ (Last) _______________________________________

Dr. / Mr. / Mrs. / Ms. (First) ________________________________________ (Last) _______________________________________

Mailing Address: _______________________________________________ City ______________________ PC _______________

E-mail: ______________________________________________ 2nd/work e-mail: _______________________________________

Occupation / Workplace: ______________________________ Occupation / Workplace: _______________________________

I am: ❍ an individual with autism ❍ a parent ❍ a relative: _______________________________________

❍ a teacher/teacher’s aide ❍ an agency ❍ a professional

3. ABOUT YOUR CHILDREN Knowing the ages, situations and schools of your children helps us notify you about programs available and scholarships for siblings.

Your child’s name _____________________ DOB ________________ Are they autistic? ❍ School _________________________

Your child’s name _____________________ DOB ________________ Are they autistic? ❍ School _________________________

Your child’s name _____________________ DOB ________________ Are they autistic? ❍ School _________________________

4. TYPE OF MEMBERSHIP ASEA has simplified its membership offerings for your convenience

❍ $60 New family membership ❍ $100 professional / agency membership

❍ $40 renewing family membership ❍ $40 teacher / teacher’s aide membership

❍ *$0 assisted family membership * ASEA recognizes that some families are unable to afford annual fees. ASEA will consider requests for assisted family membership on a case by case basis. All inquiries will remain confidential.

5. PAYMENT Memberships are renewed in June and prorated based on when you join. Donors and volunteers play an vital role in sustaining services and creating new programs.

❍ Visa ❍ MasterCard ❍ AMEX ❍ Cheque

Card number __________________________________ Expiry date ____________

Signature ______________________________________________________________

Yes! I’d also like to make a donation to ASEA

❍ $10 ❍ $25 ❍ $50 ❍ $100 ❍ Other ___________________________

❍ Yes! I’d like to volunteer for ASEA – please contact me!

Please return your completed form and/or donation to:AUTISM SOCIETY OF EDMONTON AREA#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5 E-mail: autism@compusmart.ab.ca

dd/mm/yy

dd/mm/yy

dd/mm/yy

(mm/yy)

Please consider giving of your time or financial

resources in addition to your membership.

All donations over $10 are eligible for a

charitable tax receipt.

www.autismedmonton.org

Return undeliverable Canadian addresses to:Autism Society of Edmonton Area

#101, 11720 Kingsway Avenue, Edmonton, AB T5G 0X5

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