Appreciation and ASD: Lessons Learned from a Brother with Autism

Graeme Wyatt
Growing up as the sibling of someone with autism spectrum disorder (ASD) can be demoralizing and heartbreaking. Bizarre behaviour, public outbursts, confusing interactions, and the inability to predict what will happen next are taxing on everyone, including the child with autism. But the lessons to be learned from a secretive, mysterious, and uniquely brilliant mind can reward those whose lives are touched by this peculiar disorder in a profound way.  

My older brother Ian was diagnosed with ASD before I was born. Long before I knew what ASD actually was, I knew what it looked like. My brother has many behavioural quirks, which make him who he is: difficulty speaking, loud outbursts, volatile moods, and weird dietary preferences are the first things that come to mind when I remember the early years. But the behaviour that I remember the most was how Ian watched movies.

Ian would fast forward to a scene in a movie that he liked, and watch it over and over again. There was nothing he enjoyed more than sitting two inches from the TV, rewinding and playing the same ten seconds of Toy Story and Aladdin. When I was kid there was nothing more annoying. Why would he want to watch the same scene repeatedly without watching the rest of the movie? A week later he might come back to the same scene, still unconcerned with whatever else the film had to offer.

This behaviour is characteristic of many of the people with autism I have met. Fixation on a single activity at the expense of everything else can leave caregivers and friends with a constant feeling of disconnect from their loved one. It’s hard not to see this kind of behaviour as abnormal and harmful. But the key point to remember is that this fixation is for a reason – it is not random. Where the average person sees a calculator, a person with autism may see an expression of order and beauty. This year, I finally realized that where I see a movie scene without context, my brother sees a perfect recreation of the feelings produced when he saw the scene the first time. 


It happened when Ian and I were watching YouTube videos together this Christmas. Again and again he watched two minute videos of people sliding down waterslides filmed in first person. He would watch the entire video from beginning to end, then simply click to the next. One of Ian’s favorite activities has always been going on waterslides, and the way he reacted to the video and the way he reacted to actually doing it himself was the same: contentment, joy and appreciation all rolled into one. It didn’t matter that he was not the one experiencing what he was watching, what mattered is that the recreation on screen was so good that his mind was able to appreciate it the same way.

People can spend their entire lives trying to recreate the joy they felt the first time they did something. Completing a puzzle the second time doesn’t hold the same joy as the first, because you know how all the pieces fit together, and with the knowledge of context the satisfaction of fitting two pieces together is gone. But ASD affords my brother the luxury of separating the context of a task with the joy it makes him feel. The triumph of placing two pieces of the puzzle together is appreciated for the happiness it brings, not the role it plays in a larger scheme. I had always trained myself to find joy in completion. Ian knew from the beginning that completion was inherently limited: joy is found in whatever you enjoy, as long as you appreciate it for what it is.

Graeme Wyatt is a 2nd year Political Science Specialist studying at New College, University of Toronto.

Attending My First Autism Conference

Erika Rowden

From Jan 20-22 I attended the Children’s Autism Services of Edmonton 8th annual conference. I accessed it through Telehealth, so I did not have to travel out of Red Deer, and my only expense apart from conference fees was parking.

I was so fortunate to hear Dr. Temple Grandin, Dr. Barry Prizant, Dr. Lonnie Zwaigenbaum and Dr. Connie Kasari present. So much information was shared, and it greatly enhanced my understanding of our ASD.

To summarise all I heard would require a whole newsletter, at least! But I’d at least like to share what I learned from Dr. Temple Grandin and Dr. Barry Prizant, two of the keynote speakers. If ever an opportunity arises to go and listen to them again, I’m there!

Dr. Temple Grandin was so engaging, and had a great sense of humour. Of the many issues she talked about, the ones that resonated with me the most were:
  • Do not look at the diagnosis only, look at the individual’s difficulties
  • Push them to try new things and stretch them outside their comfort zone, but not so hard as to lead to sensory overload
  • Provide choices
  • Use electronics as ‘motivators’, do not let individuals ‘zone out’ on them
  • Very important to help out in the community so as to load the brain with experiences
  • Emphasise talents
  • Use shared interests to increase social interaction
  • Teach social skills such as chores, ordering food
She explained that her aims in life were to keep out of trouble with the law, to hold down a job, and to live independently. She truly is an inspiration, and it is evident why she has been named as one of the 100 most influential people in the world by Time magazine.

Dr. Barry Prizant has a wonderful view on how autism should be viewed:
 

  • Look at the person as a whole. The goal is to increase their quality of life by increasing support.
  • There is no autistic behaviour, only human behaviour. The behaviours that we see in ASD are reactions to confusion, stress and anxiety. Behaviour is a way to communicate and cope, so we need to ask the question "why"? What does their body or mind need?
  • In the community and schools there should be increased understanding and support provided. This could be done though disability and autism awareness programs, autistic individuals talking about their disabilities and providing input for school programming, parents talking with students and staff (if they are comfortable), or autistic adults consulting to schools.
  • Parents of persons with ASD are often misunderstood. They are often "juggling a million balls", doing the best they can, and they need support.
  • Find the individual’s passions or "enthusiasms" and build on them. Offer supports that will lead to more desirable behaviour and a better quality of life.
  • Autism is not a tragedy!

He ended with a wonderful quote:

"To help children with autism, we don’t need to change or fix them. We need to work to understand them and change what we do."

I look forward to the next conference that I can attend!

Great Power

Chelsea Ludwig
The little boy screams and thrashes, eyes screwed into slits and tears streaking his face. His small fists rain down on the behavioural therapist’s arms and torso. She doesn’t flinch. With her soothing words, she tries to coax him away from the fiery anger that inhabits his entire body. The attempt is… unsuccessful. School is done, it’s time to go home, and he does not want to put on his coat. No amount of wheedling or demanding or bargaining from her, nor his mother, nor the others who hover on the outskirts of the situation, watching, will convince him otherwise.

Maybe others see a shrieking violent terror-child, throwing a tantrum over something as silly as pulling on a coat on a cold day. My coworker shakes her head, and mutters something about the mother not controlling her kid. After they finally make it out the door, the preschool teachers and therapist mill about. Mum has to be more firm with him, they say. She has to show him who’s in control. He has to learn how to listen.

But, like many others who have been raised with a family member with autism, the scene echoes with familiarity. I see the mother, hair struggling to escape a hastily made ponytail. I see her eyes search her son’s face, tenderness and pain etched into her features at his obvious distress and her inability to breach the wall that keeps them from communicating in so many ways. I see the weariness that weighs on her body, a heaviness that surely follows her through each day of battling to make the world bend to meet her son’s needs.

I see my own mother. My brothers and I are all in our twenties now, and the challenges we face no longer include impromptu meltdowns in public places; but here I have a glimpse into what life was like before one of my brothers could find the words to articulate his needs. A new kind of understanding overcomes me, and my heart goes out to this warrior woman, to all the parents who have fought and continue to fight for their child’s place in a world full of people who are often not so understanding of those who are not quite like them.

I tell my mom about this incident, and how I never fully appreciated her experience as a parent, as wrapped up as I was in my own as a child. I cry, she cries – we’re both big criers. It’s hard sometimes, but I can proudly say that my life has been and continues to be enriched by my brother’s challenges and victories, past and present. Max makes me a better person. He gives me the power to reach out to people like the little boy and his mother with something phenomenal, something they maybe don’t get the chance to experience every day:

Understanding.

Creating A Vision


“Having a vision for the life of a person with a disability is really about claiming the right to ordinary dreams…and believing that they can happen.” – Margaret Stroeve

Regardless of your child’s disability, developing a clear vision for your son or daughter’s future is fundamental to their later success in life. A vision for your child is developed and refined over time as you gain knowledge and understanding of your child and his or her disability. Your vision is a reflection of your understanding of your child and his or her place in the world.

You do not need to know how this might be accomplished; simply know in your heart that this is what you want for your child. Visit the Clarity of Vision video to learn more about how having a vision and working toward your goals becomes very helpful as you start planning for change and the transition to adulthood.
 
Visit the Human Services Transition Planning webpage to learn more about the integrated approach to transition planning and proactive supports that are available. If you have any questions about your role in transition planning, please contact your local Family Support for Children with Disabilities (FSCD) office. 

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 March 2016 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of Monday, March 14.

Central Alberta Autism Parent Support Group Meeting

Central Alberta Autism Parent Support Group
Monday, March 7
6:00-8:00pm
G.H. Dawe Community Centre
56 Holt Street, Red Deer

Topic: Grief

Free childminding available (must RSVP by March 3)

Love, Laughter and Acceptance

Erin Peden
Our day started early. Around 5 AM my son switched his status to ‘alert’ and declared it was time for the household to join him as he embarked on this beautiful day. My status was instantly switched to ‘grumpy’, and I declared that he would learn to stay quiet, at least until the sun thought that getting up was a good idea. 

“Please, honey,” I begged. “Stay in your room until I come to get you. You can play in here, but mommy needs you safe, so you are not allowed to leave your room until I come to get you.” 

This is a new tactic. I’ve never attempted this before. I know better than to assume he will remain in his room, so the idea of sneaking in an additional hour of sleep is really quite ridiculous anyway. But it’s early and I’m grumpy, so I steady forward with this hopeful wish. After a quick visit to the restroom, he reluctantly agreed to play by himself in his room, and I wandered back to the warmth of my covers. The minutes passed slowly as I waited for his excited little body to crash into me…but there was no sound of an opening door. Nor was there the sound of a little voice crying my name. In fact, there was nothing but the soft whispers of him playing in his room like I had asked. 

In my clouded morning mind, I am sure I saw the sky part and the heavens sing. Hallelujah! We’ve taken a giant leap forward! Could sleep actually be a reality in our foggy future?!!

At 6 AM I heard soft knocking coming from my son’s door. I could hardly contain my excitement – there was much praising to be done! After skipping down the hallway in a significantly lighter mood than the previous hour, I reached out for the doorknob to my son’s room to have reality smack me in the face with such force that I took two steps backwards. 

How was this possible? There was very little noise coming from his room and yet it looked like the set of Twister ran into the cast of Hoarders and they decided to have a party.

“What happened, buddy?” I whispered as I took two steps into the room. 

“I had to pee,” he answered. That was obvious. His blankets were on the floor in a soaking mess. 

“Honey, why didn’t you call me?” I asked. “Or come out of your bedroom to use the bathroom?” 

“You said to stay in my room!” he yelled in the familiar mixed tone of anger and embarrassment. “I did what you telled me!” 

And he did.

I have no grounds for anger or frustration. He did precisely what I told him. 

I sat down on the toy-littered floor beside him and thanked him for following directions. (Of course, we discussed how things could have gone differently, but we celebrated the small victory found within the hefty pile of misunderstandings.)

While he ate his breakfast, I let the guilt of the morning’s events settle into me. Overall, this was an incredibly minor incident compared to the several catastrophic events that had happened earlier in the week. 

A few days prior, a friend had witnessed one of my son’s more intense meltdowns. It was an emotional experience for her, having never been exposed to the powerful combination of his emotional and physical strength. 

“I don’t know how you do it,” she said, shaking her head when he dust had settled. “I just don’t know how you do it.”

I knew she wasn’t trying to be judgemental or harsh about my son. In fact, I’m sure she was attempting to compliment me as a parent. But for whatever reason, I found the statement came with a sting.

“It’s not so bad,” I responded (and then silently scolded myself for not having a prepared reply). I should have an appropriate retort by now – I’ve certainly heard this comment enough. However, finding the words befitting my feelings has been a bit of a challenge. 

I was thinking of this as I sipped my coffee and scrolled through my social media this morning after my son’s "redecorating episode". 

There in front of me were scores of updates from families in situations similar to my own. Families with children on the autism spectrum, up at the crack of dawn, sharing funny little anecdotes about their early morning adventures. There were no complaints about the work week from these families. There was no uproar about sleepless nights or messes or meltdowns or exhaustion or distress. Just sweet, humorous words about the unlikely series of events they call "normal". 

And it hit me. 

Modelled for me by colleagues of other spectrum parents was the recipe for the perfect response to "how I do it".

“I do it the same way any devoted parent does it,” I will say, “by knowing how to love, how to laugh and how to accept.” What better way to get through this life than with love, laughter and acceptance? 

Thank you, friends, for the enlightenment. You always seem to get it right. 

Autism Calgary Celebrates Autism Awareness Day

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