Engaging About Autism

Kitty Parlby
It’s here – it’s autism awareness month! I really like the idea of sharing information and stories with the world around us; not just the elating and rewarding parts, but also the challenges and struggles. Because I do speaking, training and consulting on autism, I get more chances than most to do this. But any individual or family highly affected by autism can help others learn more, and I’m going to discuss some ways you can do that. Not everyone chooses to share; it’s a very individual choice. But for our family, it’s a year-round, everyday thing.
Eric has what’s often referred to as classical autism, and all the symptoms that go with it. So although autism is called an invisible challenge because you can’t see it, that’s not so much the case with Eric. With his odd noises and voice fluctuations, his offbeat galloping gait, and his ritualistic hand, arm and head movements, you would know within seconds that something is up. It is to Eric’s benefit that people around him have some understanding.
I am not a self-conscious person, and Eric sure isn’t, either. It has never bothered me that people stare at him. I choose to interpret it as a sign of interest, not rudeness; I consider it an invitation to tell them about autism. It’s a perfectly natural reflex to look closely at something you don’t understand. I encourage you to make a conscious choice to not be offended, whether you choose to speak to them about autism or not. A positive point of view can be contagious! As for me, I almost always choose to engage with them. When Eric and I are out and about, and he’s making his startling movements and loud noises, I am smiling in his direction. I am using body language to communicate to the people around us that nothing is wrong; everything is okay.
Eric often wears humorous autism T-shirts when we go out in public. I started this experiment years ago, thinking that people are often more comfortable and understanding if they have more information. The difference was amazing and immediate. People smile instead of frown. I can hear parents tell their children to not worry about the loud noises – he just has autism. Many people come up to us to ask questions or tell Eric they like his t-shirt. Employees at stores, museums, theatres, and zoos are more patient and friendly. Wearing T-shirts like this is not for everyone. Some individuals would rather blend in, or pick and choose who they tell, and that’s okay too!

Here are some other ways that you can help others be engaged and informed about autism:
  • Do a presentation for your child’s classmates at school. Encourage interested parents to attend as well.
  • Invite your extended family members or friends over one afternoon for coffee and a friendly autism info session.
  • Talk to the owners or managers of businesses you regularly frequent, and let them know what they can do to make things easier for autism families.
  • If you feel comfortable doing so, share stories and photos with your friends on social media about the ups and downs of having autism, or caring for a loved one with autism. (Check out my Facebook page called Autism Inspirations.)
  • Although it may be difficult, take your autistic family member out into the community. I tell parents what I told myself years ago: be brave. Attending markets, recreation and special events in your area is a great way to open dialogue with interested and caring people who may be there.
  • Occasionally write an article about your experiences for your community newspaper.
I understand that talking about your personal life and struggles is not something that everyone is comfortable with. We all have different personality types and talents. For those of us who feel we can share our journey, the rewards are reaped by ourselves, our families, and the communities around us that we enrich!

Kitty Parlby is the mother of a young adult with autism. She is a former special needs educational assistant, a Director of the Autism Society of Alberta, and an autism speaker and consultant with her business, Autism Inspirations.

Assessment for Unusual Fears in Those with Autism Deemed “Critical” by New Study

Maureen Bennie

From the Autism Awareness Centre, Inc. blog:

Many children experience fears on their road to independence from birth onwards, and as they learn to engage with the world around them. Fear of dogs, bugs, thunderstorms, or just plain old fear of the dark are pretty common for most children at some point in their lives. Unusual fears, however, have long been recognized as a characteristic of many of our children on the spectrum. Unfortunately, little research has been done on the topic since it was first recognized 70 years ago by the “father of child psychiatry” Dr. Leo Kanner (https://en.wikipedia.org/wiki/Leo_Kanner) in his paper Autistic Disturbances of Affective Contact (https://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf). In his paper, Dr. Kanner interviewed a number of children with autism, and noted that they “reacted with horror” to specific loud noises or moving objects, including tricycles, swings, elevators, vacuum cleaners, running water, gas burners, mechanical toys, egg beaters, and that “even the wind…could bring about a major panic”.
Finally, a recent study published in Research in Autism Spectrum Disorders (http://www.sciencedirect.com/science/article/pii/S1750946712000955?showall%3Dtrue%26via%3Dihub) is looking into the issue more thoroughly. The study looked at over a thousand children and found that 41% had what was deemed an unusual fear. The most common fear was one of toilets, followed by mechanical things, heights and weather. The study concluded that events that most children can ignore or don’t notice can still distress those with autism to the point where it impairs functioning.
“Children with autism perceive, experience, and react to the world differently than children without autism. What is tolerable for most children (e.g., clouds in the sky, a change in activity or routine, sensory input, or a performance request) might be terrifying, distressing, or infuriating for a child with autism.”

The study found that most children with autism experience both common and unusual fears, and that those fears have a role in further impairing functioning. Its finding was that clinical assessment was essential for those with autism, as there are proven and effective treatments available to help most of them. Having to face fear over daily objects or events can be a root source of anxiety, and anxiety (along with sensory overload) is one of the leading causes of autistic meltdowns.

While dealing with your child in a state of panic can cause despair for parents, don’t lose hope. Most children can learn to manage their fears if given the right tools and help.
Some ways to help your child with autism manage their fears
  1. Learn to recognize when your child is afraid, and what their fear triggers are. The famous line works here – if you’ve seen one child with autism, then you’ve seen one child with autism. Each child is going to have different fears, and they might express fear quite differently from you or other children. Look for heightened behaviours or signs of stress like repetitive movements, etc. Each child will be different, so you will have to learn to read yours.
  2. Acknowledge their fear. While the fear might seem irrational to you, to your child it’s very real. Telling them that it’s “just a vacuum”, or “just a heating vent” is not going to help your child when that vacuum or heating vent is triggering a panic – I’m unsafe – response. Let them know that you understand they are afraid, and that you could see why it might be frightening.
  3. If you can, investigate the fear in small doses. “Let’s walk up to the vent together”, “how about if I walk up to the vent, and then you can join me if you want to”. Build confidence over time, but take it slowly.
  4. If you can’t, try to mitigate the fear. If it’s a thunderstorm, maybe they need a safe place, or special noise dampening earphones. If it’s something you can avoid and that’s the better option for the moment, avoid it.
  5. Find ways that work for your child to help manage stressful moments. There is a list of resources at the bottom of this post, and different things work for everyone. Sometimes a handheld video game helps to soothe or music. For some children it’s a “stress toy” or fidget, etc. Whatever you would normally do to help alleviate anxiety can help with fear.
  6. Model ahead of time. Let them see charts or try out the action or idea before they are expected to do it. Sometimes role playing what will happen helps if the fear is related to visiting a new place or doing a specific activity.
  7. Don’t be afraid to seek professional help. There are many therapists and therapies that work well for dealing with both common and unusual fears.
For further reading, have a look at:

Developmental Disability + Mental Health Problem = Dual Diagnosis

Cynthia Robinson
Let me begin this article by again stating I am not a mental health professional or an autism expert in any sense of the word. I am a parent of a complex individual who had many things going on simultaneously: impaired intellectual abilities, ASD, extreme anxiety, acquired brain injury, epilepsy, OCD and, in her mid-twenties, sudden onset psychosis. Many times in my daughter’s life I made joking references to not “getting a manual” for this kind of parenting. But the truth is, when I was pregnant and it was kind of a permanent situation I had to deal with, I headed out to the library to make sure I had some kind of idea what to expect when my daughter arrived. Not the most maternal admission, but it is the truth. I read books because I was hoping to solve the riddle of how I, an inexperienced and unknowledgeable person, was going to somehow fashion 37 trillion cells into a decent human. In the end, no manual could have prepared me for the path her life took.
After having become suddenly and unexpectedly acquainted with mental illness and having read so many books along the way, it stunned me that I was in no way prepared for it. Did I skip over the sections where the statistics about Dual Diagnosis were discussed? Was that information in books I did not choose to read? Whatever the cause, I truly did not see it coming, had never given it a thought, and definitely had no idea how to handle it. When I ran the maze of services trying to find help, it became clear that I was not the only one who was unprepared. Services are confusing and difficult to access, and front line medical workers have little experience with or training for treating persons with developmental disabilities – much less with developmental disabilities AND mental illness. Services are not well coordinated and, from the amount of redirection I encountered, it is unclear who is offering what. It’s a mental illness maze to negotiate at a time when we are scared and desperate to maintain our loved one’s well-being.
So, I aim to shine a light on the issue of Dual Diagnosis from a basic and simple perspective: the perspective of the person afflicted with mental illness, their families, friends and caregivers. I will leave the daunting issue of medical services to the policy makers and professionals. I will support them whenever and wherever I can; however, these policy revisions take too much time and too many changes in government to develop. When our people are in need due to a mental health crisis, we need to be efficiently directed to the appropriate resource rather than frantically running the mental health maze and losing precious time going off in ineffective directions. We will need to be personally prepared to deal with it if it happens, long before the system catches up to the need in this community. When mental illness strikes, trust me, the stress explodes on families like a dirty radioactive bomb.
There are many studies out there, but there seems to be a consensus that people with developmental disabilities are three to six times more likely than the general population to develop a mental health disorder. It is difficult to admit that, with all this information floating around, I could have had no concept of it until I was in the water up to my nose. I am unsure if anything can help us much with a surprise mental illness, but I strongly suspect that, had I known something before being thrown in that water, I might have taken some swimming lessons beforehand.
Dr. Yona Lunsky from Ontario has been so kind as to share some of her extensive information and research with us. Her team has developed incredibly useful tools and put them online to explore. I will provide a first few links to videos online and note that they are interesting to watch whether there is a dual diagnosis or not. Anyone seeking or providing medical services for a person on the spectrum will benefit from watching. Enjoy!

https://www.youtube.com/watch?v=2a-Ue8X1u5g&t=28s&index=3&list=PL6YxDLuEsji5xwAoP6sEwKujhlljMVDzn

and

https://www.porticonetwork.ca/learn/videos/dual-diagnosis?intcid=search-results

Do You Have A Child with Autism Spectrum Disorder?

We are looking for youth between the ages of 12 and 24 (born between January 1, 1993 and December 31, 2005). Please consider taking part in our study!

We Want to Learn More About
1. How families of youth with Autism Spectrum Disorder (ASD) decide about vaccinations, and
2. Things that can make it easier or harder for youth with ASD to be vaccinated

We Want To Hear From All Families
We’re interested in talking to all families of youth with ASD, including those who chose to accept, delay, or decline some or all vaccinations.

Parents and guardians will be compensated for their time and travel as a thank-you for partcipating in a two-hour focus group.

To learn more:
Contact Sheetal Prasad at (780) 735-6273 or sheetal.prasad@ahs.ca

This study has been approved by the Health Research Ethics Board of the University of Alberta (Pro00074386).

We Want to Hear From You!

We are looking to publish stories, event notices or news items from all parts of the province. If you’d like to have your items included in the November 2017 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of November 15.

A Conversation With A Rewind Button

Roman Sokolowski
Asperger’s is, at least as I’ve experienced it, a condition of paradoxes and contradictions. Thoughout my life I’ve needed huge amounts of time alone to self-regulate, but I’ve constantly sought out human company, as well. But even when I’ve wanted to be around people, I haven’t always had the social skills needed to make the feeling mutual. With my vaguely disoriented demeanor, some people see me as a lost little boy (well, now a thirtysomething little boy), and treat me with kindness and patience to match. Other people feel an immediate discomfort with me from our very first interaction, and avoid contact with me as much as possible. But the thing I’ve really been wondering about lately is, how can someone who’s so good with words so often end up saying the wrong things?
If I say I’m hyperverbal, it’s not meant as a fancy brag. When I was in my early teens I had an assessment at the U of A Hospital – part of the exhausting process that eventually earned me a genuine, certified Asperger’s diagnosis – and the results placed me in the 99th percentile for verbal intelligence, on one end, and the 16th percentile for spacial intelligence, on the other. I doubt my gross motor skills scored much better, either. You could accurately say that I’m clumsy, uncoordinated, socially inept, and spatially confused, but words always felt like a safe space to me – like something I could comfortably hold on to.
The problem is, my comfort with words has often been overwhelmed by my discomfort with people. In the midst of my social anxiety, even the fanciest turns of phrase could turn into yet another social faux pas. When I’m in a conversation with an unfamiliar person, the words often come out in lumps, cringe-inducing things are said, and afterward I am left to sort through the wreckage, trying to figure out where it all went wrong. (I could probably think of specific examples, but I’m really trying not to.) When I was a teenager, I would compensate by using the fanciest book words I could pull out of the thesaurus tucked away inside my head. As an adult I’ve learned to value being plain-spoken and clear, but this hasn’t necessarily helped me avoid saying really dumb stuff – if anything, it just makes my more embarrassing utterances even more painfully obvious.
So my conversations can easily be a mess, but writing is different. Writing is a chance to shape and explore the possibilities of language with no social pressure. There is no rush to instantly come up with the right words, one after another, all while maintaining eye contact (but not too much) and not fidgeting (but also not being too rigid). The more comfortable I am with someone – say, with an old friend – the more closely the experience of a conversation can approach the freedom of writing. But even then, you can’t erase your speech – you can only go forward, with a new rush of words to half-bury the old ones.
On the other hand, I can sometimes spend an entire day sporadically revisiting something as minor as a Facebook status update of a few paragraphs. I find it weirdly relaxing to gently tweak the word choices, trying to improve the meter and flow of the sentences. A sign of social media addiction, perhaps, but also a great comfort: here is something I can do entirely on my own terms, a place where I feel at ease and in control. With all the frustration and powerlessness that people with Asperger’s and autism can feel in the broader social world, being able to tinker and perfectly organize things within our own little bubble – whether those things are words, model trains, or stamps – can be incredibly calming. Life may not have a rewind button, and a foot in your mouth can linger in your regrets for a lifetime, but at least a word processor allows you unlimited redos.

Community Connections by Autism Edmonton

When asked what makes their life meaningful, most people refer to relationships. Here at Autism Edmonton, we strive to create opportunities for our community members to grow such relationships.
To achieve this goal, we are excited to launch a series of outings – Community Connections – which are open to people with or without autism, their family members, friends, or support people.
This initiative is organized around a simple idea: we would like to offer more opportunities for leisure and socialization.
Bringing together people of different ages and interests helps connect those who might not be able to meet through other services or discussion groups we offer. Moreover, people with no relations to autism are welcome to attend Community Connections, which allows us to raise understanding of autism and challenge the misconception that people living with autism are anti-social.

On October 21st, we hosted our first Community Connections of the year. The event was organized at the Prairie Garden & Adventure Farm, north of the city, near Bon Accord. Attended by a hundred members, this family-friendly activity was a chance to enjoy Edmonton’s beautiful countryside.

Moreover, with the Haunted Pumpkin Festival going on at the Farm, our participants got to explore over 50 fun Halloween-themed activities including puppet shows, the haunted farm house, scarecrow making, and much more.

We had rented a greenhouse pavilion for the members to warm up after running around the huge 35-acre farm and offered them some treats, beverages, arts, and crafts to keep busy while taking a break.

If you missed our first gathering, don’t worry! We have planned a variety of other recreation and leisure activities to come, including trips to Edmonton attractions, a Christmas party, BBQ and many others! Better yet, our events are free of charge (admission fee to sites visited might apply), and everyone is welcome. Please stay tuned and follow our calendar updates at www.autismedmonton.org or announcements on Facebook (www.facebook.com/AutismEdmonton).

We hope to see you soon at our next outing!

Lessons Learned as a Behavioural Aide

Rachel Pagaling
As an undergrad, I was always interested in developmental psychology, and especially parent-child relationships and atypical child development. When I graduated in April I wanted to equip myself with practical experience outside the classroom walls in preparation for graduate studies in school and clinical child psychology. When I applied to work as a behavioural aide for children with Autism Spectrum Disorder I thought I knew what I was getting myself into – but I was in for a surprise! Working as a behavioural aide for children with ASD has challenged me mentally, physically, and emotionally – all in the best possible way! Each child is wonderfully unique, and I am still learning something new everyday. Working as a behavioural aide for children with ASD has contributed to my overall interest in developmental psychology and has greatly influenced my desire to further my studies in this area.
There are four main lessons I have learned working as a behavioural aide for children with ASD. First, they have a fresh way of seeing the world – as adults we can get caught up with daily hassles and strict deadlines. In the midst of our busy lives, we tend to forget and appreciate the simple things. Working as a behavioural aide, I am reminded of how the little things can change a person’s mood and day. The children I work with brought my attention to precious moments and simple objects I would not even look at twice if I were just by myself. Moments as simple as watching a ladybug crawling down your finger, saying, “hi!” to your neighbour walking their dog, or blowing dandelion seeds into the wind can bring a smile to your face and instantly brighten your day.
Second, in addition to seeing the world with fresh eyes, children with ASD are creative! They do not receive enough credit for their achievements and talents. I had the opportunity to work with a 10-year-old client who was a very talented artist. She absolutely loved Max and Ruby, and she could draw the characters to perfectly match how they looked in the cartoon. Another client I worked with loved reading and writing. She would create worlds and tell me her fascinating stories about each one.
Third, I learned that many children with ASD do have an interest in other people, and they can clearly exhibit behaviours that prove it. While I was running with a client at the park, I accidentally fell and hurt my knee. I pulled up my pant leg to see if the fall left a scratch on my skin. There was no scratch, but the client I was working with saw what I was doing and calmly said “You’ll be O.K.”, all the while softly patting my knee. I had another client who, during her snack time, broke her granola bar in half, made great eye contact, and offered the other half to me.
Lastly, by working as a behavioural aide I learned that all children need constant support and dependable people to look up to and promote positive interactions. All children need love and comfort when tough situations present themselves, patience when learning something new, and praise and encouragement when they complete a task and achieve their goals. Furthermore, all children want to be accepted; they desire to be understood and acknowledged by their teachers and peers. At the end of each day, all children need love, encouragement, and acceptance. I love my job and I look forward to working with children everyday. I have learned so much working as a behavioural aide and I am excited to learn even more from these creative, thoughtful, and amazing children in the future!

Disability As Normality

Jessica Pigeau
When I was a kid and my mother had to work, my siblings and I would spend the afternoons at my aunt’s house. My aunt would help us make crafts and teach us how to bake. Sometimes, when the weather was nice, my much older cousin, who was closer to my mother’s age than my own, would take us out on little expeditions to the park, or the store, or wherever we happened to go.
Sometimes, my cousin would buy some food or a small present for us. She would ask me to pull out her purse from her large bag, I’d pass it over, and she’d pay. The clerk would bag the items, hand me the bag, and then, strangely, try to hand me the change and receipt. Sometimes, my cousin would ask an employee at the cinema or the fair for directions, and the young man or woman at the counter would turn to me, a kid of ten or twelve, to answer the question.
This may seem strange to you. Why hand the money to the child rather than the adult with the purse? Why talk to the child rather than the adult who asked the question? It may help you to know that my cousin requires the constant use of a wheelchair in order to get around, and has for her entire life. My cousin is a well-spoken, intelligent sort, more than capable of handling herself in most situations (at least those with a good number of ramps), but people just don’t quite know what to say, how to act around a woman in a wheelchair.
Of course, as someone whose difference is not so obvious to the eye of a stranger, I don’t encounter quite the same awkwardness. I find, rather, an entirely different form of awkwardness. When the usual mask of bland normalcy I use to ease social situations with strangers slips off, I find myself on the receiving end of a bewildered looks, intrusive questions, and, rarely, outright anger. When I manage to pass as a neurotypical (albeit a rather eccentric one), many respond to my interest in autism in a halting, awkward manner, ask strange questions, or change the subject.
People find the idea of disability upsetting, unsettling. Both when they can see it and when they can’t, when they’re not quite sure what they’re looking at. They don’t know how to behave, and that makes them confused and scared and, sometimes, angry. A natural response: the fear of the unfamiliar.
The average teenager does not have a close friend with a significant disability. The average teenager does not have a close friend with a significant mental illness — at least, not that they are aware of. They do not consume media that delves into the mental and emotional worlds of people with disabilities. At a formative time in most people’s social lives, where they are making connections with a broad spectrum of society, they are not connecting with a group of people whose differences, their difficulties, make the world a much harder place to live in. They are not building empathy for a group of people it’s very easy to ignore, to forget.
The average person doesn’t have any conscious animosity or dislike for people with disabilities. They’re uncomfortable. So they don’t spend a lot of time thinking about what we want, what we need, the ways big and small in which society is designed, not necessarily to hurt us, but with little thought to the quality of our lives.
Disability needs to be normal. I say this in the sense that people need to be comfortable with disability in order for society to be able to understand and serve the needs of people with disabilities. They need to be comfortable engaging in a dialogue with people with disabilities and their families, and the way to attain that comfort is not by smoothing away the frightening edges of life with disability, but by making it a fact of life.
When I was diagnosed as autistic, I wasn’t angry or scared or ashamed, because disability had always been a part of my life. Wheelchairs, ramps, nurses — all a normal part of a world meant to include the cousin who took me to the movies and bought me ice cream. Being disabled wasn’t a bad thing, because it just made me a little more like her, and that wasn’t a bad thing at all.