Autism Speaks Canada

This is a special post by Sara Winter, mom of two boys, a classroom aide to kids with autism and the founder of Squag.com, a new application for kids on the spectrum to connect with one another.

Loving someone with autism is a transformative experience; we all enter a new level of consciousness and are opened up in ways we never could have imagined.

I have an eleven year-old nephew on the autism spectrum. I’ve been lucky enough to be his aide at home and at school for over nine years. Being with him as he navigates his daily life has changed the way I look at everything and has deeply impacted our family from the inside out.

About two years ago, I could see that “Leo” needed autonomy from me at school; we had been together almost every day for years and although we tried everything to keep our relationship dynamic, the very function of it worked against his first steps toward independence.

I needed to do something with everything that he had taught me, and because of the way my sister had structured his program over the years, I wasn’t partial to any one therapy. My passion was creating recreational, creative, and social opportunities for kids with autism.

When Leo received a diagnosis almost ten years ago, there was no Google, Twitter or Facebook. Families were isolated by their autism with very little support. But now, social media is changing the landscape for a newly diagnosed parent by connecting them with others in real time, through mentorship, hope and shared experiences.

I decided that kids with ASD (with the involvement of their parents) should have that opportunity for this kind of connectivity too. It just made sense to me that kids on the spectrum should have a safe place online that reflected their needs and appreciated their differences.

Ironically, I was the least tech-savvy mom out there. But as I built Squag™ I got a much-needed education. Filtering through the current technology can be incredibly overwhelming for parents. Oftentimes, kids are more adept at using the computer than we are! We built Squag^TM to be as easy to administer as possible; the kids’ side of the technology doesn’t work without the parental involvement and vice versa.

Most of what we see on the internet is brash and assaultive. We wanted to create a different environment: something that would help these kids regulate, self-reflect and engage in way that would empower them to build a sense of competency with the idea of friendship.

The first priority had to be security. So many different kinds of safety had to be taken into consideration. But then it became really simple: You’re not getting in unless we know you. We will take as long as we need to process your application and if we have to, kindly send you away. We plan to work with autism organizations and schools to make this process easier for those who are well intended.

These kids are capable of so much more than most people give them credit for. But we have to be able to move with them, moment to moment and what has more agility than scalable technology?

Squag^TM has a matching system to help parents gives their kids a starting point with the app; they can scaffold from behind the scenes as much or as little as they like.

The launch of Squag(LITE)  (our first version!) is exciting for our whole family. We love hearing from our testers from all over North America.  Kids are so intuitive when it comes to technology and know exactly what they want (or don’t want!).

It is our mission to give these kids a safe place to self-reflect, create original thoughts, and reach out to their peers without being spoken for.

This is what energizes us and keeps us going.

And the best part?

This is only the beginning.

This week our blogger Zara writes about why she walks in the Toronto Walk Now for Autism Speaks Canada.

Sunday is approaching fast and my family is preparing for the Toronto Walk Now for Autism Speaks Canada.

The A to Z Team is hard at work tying up loose end; the reinforcements (Grandma) arrive tonight followed by our final tally of fundraising efforts. My kids love this event and so do I.  My kids love the activities, my daughter loves the Toys “R” Us booth and my sons are particularly fond of the bouncy castles. My husband really enjoys the information booths; he loves how all the services and programs are highlighted there, making it really easy to access new things.

For me the event is more than that.  Yes, it is a wonderful fundraising event and a great way to connect with services but for me its peace.  It’s the one place I can go every year where no one judges me, no one offers me “non-valid” advice, and we just get to be the family we are.  As busy and as crazy as my kids can get, they are never out of place, they just belong and that is a wonderful feeling.

So kudos to Autism Speaks Canada for their tireless work on the fantastic events.  I’m sure Sunday will be a busy day for all.  I’d say look for me, but that day I get to be just another mom.

This is a book excerpt from John Elder Robison’s latest book, Be Different: Adventures of a Free-Range Aspergian.

Can you feel the labels on your underwear right now? I can. I can also feel the seams on the inside of my shirt and pants. At this very moment, the tags in the collar of my shirt are gnawing at my neck. Luckily, I have taught myself to ignore those feelings most of the time. Otherwise, they would drive me crazy. I know a rational designer would not incorporate the functional equivalent of sandpaper into his own underwear or create clothes with seams that scratched and clawed him every time he got dressed, so I’ve come to the conclusion that I am unusually sensitive to certain kinds of touch. Unfortunately, knowing I am different does not make me more comfortable. I still have to endure constant assault from seams and labels on clothing. Even the fabric itself can become aggressive.
 
Psychiatrists tell me that many people on the autism spectrum have unusual sensitivities. Some— like me— are sensitive to touch. Others are sensitive to sound, or light, or even smell. A few of us are sensitive to everything.
 
Touch sensitivity has its good points, but it can also bother me a lot, especially when I think about it. As I write this passage, my clothing is becoming increasingly noticeable. Sharp little fibers are biting into my back. The label on my shirt is scratching my neck. The more I think about it, the more I feel. Soon, I may have to tear all these clothes right off. Hopefully something will divert my attention before that happens. Otherwise, this shirt is headed for a bad end. But probably not. If this time is like most, some distraction will come along and my touch sensitivity will fade into the background.
 
Things were worse when I was younger. There were days when a piece of clothing would bother me all day, and I’d just sit there distracted and fidgeting. “Why are you squirming around like that?” my teachers would challenge me when they saw me wriggling. “Can’t you sit still?” I never knew how to answer them, so I’d say something like, “I don’t know,” and they’d just get mad at me. For some reason, I never thought to say what was really bothering me. I knew I was itching, but for some reason, I could never seem to say that. I should have said, “My sweater is scratching me and I’m distracted.” If I had, I’m sure my teacher would have understood. Maybe she’d have told me to take it off, or worked something else out. I wish I had known, but I just didn’t get it.

Excerpted from Be Different by John Elder Robison Copyright © 2011 by permission of Doubleday Canada.  All rights reserved.

This is a special post by Lisa, mom to 2 children, one with autism. Lisa and her husband Gene are members of Logan’s Mission and will be walking in the 1st Annual London Walk Now for Autism Speaks. 

I’m sitting on the side of the tub trying to catch my breath.  I feel like someone has just punched me as hard as they could. It is at this moment that I know in my heart that my son has autism. I didn’t know what that meant or how I could make it better. I am a Mom and that is what I do, I make things better. It has been almost 4.5 years since that day in the bathroom and things are better.

Today, I am happy to say that Logan’s autism has made me a better person. He shows me the value of hard work and perseverance.  That we need to appreciate the simple things in life.  That a smile and “I love you” can turn around any bad day.  He shows me that you shouldn’t let society’s expectations define you or prevent you from doing anything. That anything is possible.

I walk in honour of my hero. I walk in honour of my son.

John Elder Robison is an adult with Asperger syndrome, an author and board member of Autism Speaks. Be Different, John’s second book which was recently published, dives deeply into the experience of life on the autism spectrum. In this special post, John writes an intriguing essay which explores not only the idea of autistic self-advocacy, but the breadth and depth of what it means to be autistic. 

Self Advocacy

What, exactly, is self-advocacy and what is its place in the autism community?

Autism is a communication disorder, with a broad range of affect. Some people’s autism makes them eccentric and geeky. Other people can’t speak at all, as a result of more severe autistic disability.

Therefore, in the world of autism, some of the population is capable of what some call self-advocacy while another part is not. It should come as no surprise that those groups would have very different wants and needs. That disunity of need and purpose is a fundamental issue we must address.

At its heart, self-advocacy is nothing more than speaking up to get what you want. Everyone who communicates does this, all the time. We self-advocate when we ask for different courses in college. We self advocate when we ask for a chair with a lumbar support at work. Can you recall the last time someone looked at you and said, Speak up! That’s a request for self-advocacy. Learning to communicate effectively enough to get your needs met is an essential part of growing up and making one’s way in the world.

If you’re autistic, your needs are mostly the same as anyone else (food, shelter, security) but you may have some unique twists. For example, you may have allergies, or be sensitive to the flicker of fluorescent lights, or be unable to wear wool clothes because the feel of the fibers drives you crazy.

You may believe your own communication problems will be reduced if the people around you are willing to change their style of engagement to accommodate you, or you may ask that they excuse some of your expressions, which might otherwise be offensive or unacceptable.

Those are all examples of what we call self-advocacy, because the speaker is asking for what he thinks he needs to be successful. I don’t have any issue with anyone who does that. Everyone should seek what they need.

We all engage in this behaviour. Knowing that, I’m not sure why it’s singled out in autistic people by using the term self-advocacy. That makes an ordinary behaviour sound like something unique to certain autistic folks when in fact it’s what anyone who wants to get ahead does. Speaking up to get your needs met is a more accurate and less clinical term for 99% of what we call self-advocacy.

I believe we unwittingly do our more disabled autistic population a disservice by aggrandizing this behaviour by calling it self-advocacy. The clinical term makes it sound like something unique, which it isn’t. Non-autistic people see the accommodations the autistic self-advocates ask for, and jump to the conclusion that those accommodations must be typical of what’s needed for all autistic people.

Unfortunately, nothing could be farther from the truth.

When a teenager with Asperger’s says, “I don’t want to be changed. I want people to accept me as I am,” he is expressing a sentiment shared by every other human. The difference is, the teen with Asperger’s may have Asperger-driven behavioural issues which make that dream much harder for him to attain.

When that same person says, “I want help learning to get along with people,” the lay person hears that and thinks that’s what all autistic people need – help making friends. If only it were that easy.

To make a broad generalization, one might say the articulate and verbal autistic population wants help with social problems, finding and keeping jobs, and support fitting into the community. The non-verbal or partly verbal autistic population is in a very different fix. None of the aforementioned accommodations are of much value at all to them. They need help mastering the basic skills of life and therapy to help them communicate on a much more fundamental level. Many people with more severe autism also have other significant medical challenges. Their needs are totally different.

Yet they cannot self-advocate. Their communication challenges are too big. At the same time, the public is constantly hearing from a verbal autistic population whose wants and needs are totally different, and they are increasingly strident in their demands.

So what should we do? I would never suggest a verbal autistic person keep quiet simply because his needs differ from another autistic person who can’t talk at all. Yet I recognize the problems that speaking out may cause for another part of our community.

I have been guilty of this myself. In my earlier writing, I’ve said, “I don’t need a cure. I just need understanding.” I still believe that’s true for me, but I now recognize the tremendous breadth of the autism spectrum. As a result, I am now sensitive to and accepting of the views of others who do want to be “cured,” however that may be defined. My views about the “cure” may differ from yours but I recognize, accept and respect differing points of view, as long as they are not harmful or destructive to others.

As a community, I think we owe it to our less vocal members to make the lay public aware of the breadth and depth of our needs. There is a huge difference between a job skills coaching group and an ABA behaviour program, but both are vital to their respective constituencies. When we speak to audiences, whether in person or through the media, we should be particularly sensitive to this issue.

Purchase John’s new book, Be Different, at indigo.ca.

Why World Autism Awareness Day? Why Autism Awareness Month? Why Autism Speaks Canada?

This is a guest post by Suzanne Lanthier, the Executive Director of Autism Speaks Canada, and mother of a son with autism.

Why?

Because there is a public health crisis in Canada that no one wants to talk about. AUTISM.

Because there has been a 600% increase in rates of autism diagnosis in the last 20 years. 600%.

Because it’s a national disgrace that you can to wait up to 2 years – just to get a diagnosis.

Because autism doesn’t go away – it just grows up. We do virtually nothing in Canada to support our adult community.

Because families are suffering – emotionally and financially.

Because you shouldn’t have to decide what province you should live in to getter faster access to treatment.

Because parents should not be spending their precious time and money on lawsuits , arguing with schools or fighting for services.

Because Canada has some of the best researchers in the world who are working collaboratively with other global leaders to find the answers to the autism puzzle. That’s where they should be spending their time – not fighting for dollars to support their research.

Because you shouldn’t have to win a lottery to get access to treatment. Yes, a lottery. Imagine.

Because there’s a federal election campaign going on right now and there’s more talk about who is debating who then the national health crisis in the autism community. And it is a crisis.

Because you shouldn’t sit for 2 years on a waiting list to get treatment. You wouldn’t do that if your child had cancer.

Because its only April 1 – and my bank account is at a negative balance already to provide treatment, support and care for my child and I know there are thousands and thousands of families who struggle every month to make ends meet.

Because autism needs to be better understood.

Because people with autism need to be accepted for their differences.

Because everyone’s voice matters – everyone deserves to be heard.

Because now, more than ever, the voices of the autism community need to come together to effect the changes that need to happen.

Because if you don’t know someone with autism today, tomorrow you will.

Because there is only 1 thing standing in our way of finding a cure – money.

It’s time to talk. We’re talking.

That’s why … well, just some of my reasons. Why does this matter to you?

Autism Speaks .. It’s Time to Listen.