Autism Speaks Canada

This is a guest post by Dr. Raphael Sharon. He is currently the President-Elect of the Pediatric Section of the Alberta Medical Association and the Chair of the Society of General pediatricians of the Greater Edmonton Area. He is also a Clinical Associate Professor at the Stollery Children’s Hospital in Edmonton. He visits Bonnyville and Spruce Grove as a Consultant Specialist. Dr. Sharon has a private practice in the Westend of Edmonton. He has a general pediatric practice, with special interest in food allergies and obesity.

The title of this blog does not refer to business connections, or whether you have a good connection for your cellular phone or Internet.

We tend to take a lot of natural things for granted in life: our ability to see, hear, smell, and feel. Also, our ability to make a connection with a person we’ve met for the first time – to recognize if they are sad or to share in their happiness. 

For most children with autism spectrum disorder, making a connection with a person is one of the hardest things to do. And it is one of the characteristics that persists throughout the entire autism spectrum, from the most severe case to the higher functioning patients with Aspergers. And we still do not have a clear understanding of why this is the case.

There is a higher incidence of other diseases (so called “comorbidity”) if one has autism spectrum disorder – such as Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiance Disorder (ODD) and Obsessive Compulsive Disorder (OCD), just to name a few. Again, there are some theories as to why this may be the case, but a definitive understanding still eludes us.

Unfortunately, for the longest time, some (including many insurance companies) considered autism as solely a mental health problem. This could not be further from the truth. Autism is a complex, multifactorial disorder that seems to have a combined origin in both genetics and environment.

When a young child with autism spectrum disorder has pain or is otherwise unwell, sometimes the only way she can express herself is by behaviour. Speech delay, both in expressing language as well as understanding words, can be one of the first signs of autism. Trying to figure out why behaviour has suddenly changed is one of the many challenges for both parents and healthcare workers. Potty-training a child with autism can be extremely challenging and sleep problems are also very common. These different medical aspects of autism spectrum disorder are still not fully understood.

The Autism Treatment Network (ATN) was established to help understand autism better through further research and also, perhaps most importantly, to provide comprehensive medical care to kids with autism spectrum disorder. ATN brings together hospitals and physicians with an interest in autism across North-America. Institutions in Toronto and Edmonton are the only two Canadian participants and I am fortunate to be part of the Edmonton ATN group which launched in June 2011.

As a General Pediatrician practicing in the community, I have a special interest in patients with autism spectrum disorder. I absolutely love working with all children, but I especially enjoy working with kids with autism. I have a 17 year old patient – we’ll call him Joe – who has severe autism and hardly any vocabulary. I have been following him for years, and he and I have developed an unspoken bond. He always gets chocolate after a doctor’s visit and is able to say “choco”. When he comes in for a checkup or when he is unwell, he lets me examine him while chanting “choco, choco, choco”.  We have established a connection. On two occasions, he has come to me straight from an Emergency Room, not because the doctor there was not capable nor because I am a better physician. It was simply because Joe and I “clicked”. He is one of the many autistic patients I truly enjoy working with. 

When my patients turn 18, they transition to a family physician for further care. In Canada, there is a shortage of family physicians, let alone doctors who have an interest and can take the time to work with an adult who has autism. I am somewhat concerned about who will take over medical care for Joe. It seems to me, it may put even more load on the shoulders of his parents. This should be a load we all share.

My hope is that through the ATN we will be able to identify more common medical problems in patients with autism that we can then, hopefully, manage. This in turn should help us provide even better care to the children, adolescents and adults with autism. And finally, I hope that we will continue to work hard on establishing a medical platform/model that will offer more help to our patients when they reach adulthood.

I hope I have given you some insight into the complex issues associated with autism. Perhaps, I’ve also connected with you. Making the connection with a child with autism for the first time is very special. Here’s to making many more!

Research funded by Autism Speaks provides vital information on the need to screen baby siblings of children on the spectrum

Parents of children with autism are understandably concerned about the likelihood that subsequent children will be affected. New research, made possible by Autism Speaks, shows that the chances are considerably higher than previous estimates.

“These findings emphasize the importance of screening high-risk younger siblings,” explains Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D., “because we know that early diagnosis and early intervention help children on the spectrum achieve their greatest potential.”

The study is the largest ever of its kind and is being published online today by the respected journal Pediatrics. It found that in families with one or more children on the autism spectrum, the chances that a baby sibling will develop autism are around 1 in 5, more than double previous estimates of 1 in 10 to 1 in 30. The rate was much higher among younger brothers (1 in 4) than among younger sisters (1 in 9). In families with more than one older child on the spectrum, 1 in 3 infants eventually developed autism. The severity of the older sibling’s autism did not affect the risk to younger brothers or sisters, nor did other family attributes such as parental age, ethnicity, or birth order.

In all, the researchers assessed 664 infants, all of whom had at least one older sibling with a verified diagnosis of an autism spectrum disorder (ASD). They enrolled infants very early (two-thirds of them before 6 months) before symptoms of autism become obvious. The clinicians then followed the babies through 36 months of age. They used gold standard diagnostic methods and comprehensive assessments performed by expert clinicians. (Visit Autism Speaks website to learn the early signs of autism, and Dr. Dawson’s accompanying commentary for more information on how parents and healthcare providers can access important resources developed and supported by Autism Speaks.)

“Previous studies were done in the 80’s and 90’s when different and more narrow diagnostic criteria were used,” Dr. Ozonoff says of the dramatic findings. “Previous studies also used different methods and some did not directly assess children.”

“The implications of the study are clear,” Dr. Dawson adds. “Baby siblings of a child with ASD need to be tracked carefully. Pediatricians and other medical professionals should work actively with parents to monitor developmental milestones, especially those related to autism, and if needed begin intervention without delay.” Equally important, she adds, is the need to fund further research on how early intervention can be best used with infants and toddlers and whether it might be possible to develop preventive measures to help children not yet showing full symptoms.

Autism Speaks made the study possible by organizing the High-Risk Baby Siblings Research Consortium, an international network that pools and coordinates studies of affected families in 21 sites in the US, Canada, Israel and the UK. Alycia Halladay, Ph.D., Autism Speaks director of research for environmental sciences, and Andy Shih, Ph.D., vice president of scientific affairs, organized the consortium in 2003, in partnership with the Eunice Kennedy Shriver National Institutes for Child Health and Development. Autism Speaks funded the participation of lead authors Sally Ozonoff, Ph.D., and Gregory Young Ph.D., both of the University of California-Davis MIND Institute and also funded the study’s analysis of collaborative results. The National Institutes of Health provided overall funding.

This is a special post by Anita Helser from team Amber’s Angels. She will be walking in the 4th Annual BC Walk Now for Autism Speaks on September 25.

I walk for my daughter and my team walks in support of both of us and all children like her. We walk with hope that a change will happen, with a belief that we can make a difference, with pride in those who have Autism and to help recover these wonderful Can you imagine living every day with thoughts and ideas to share and the inability to do so? I can’t but I know that my daughter, Amber, can. No child should feel this way.

We walk so that they can live and survive in a world that is chaos to them. We walk so that no parent ever has to hear the words, “Your child has Autism”. We walk so that others can understand and accept these precious children.

I learned something myself at the last walk: that I still needed to be more understanding myself. I had a view that Autism needed to be cured wholly. I gave a speech at the 3rd Vancouver Autism Walk last September and was heckled by a teen with Autism saying why is it bad to have Autism. This got me thinking, a lot. It isn’t bad to have Autism. I do not think any less of my child because she has Autism. I feel that she has taught me so very much because she is Autistic. I would like to see all people afflicted by this neurological disorder live a full and complete life. Find ways to be able to be independent and survive this over stimulating world in which we live.

My fears as a parent are that my child will not be able to have a full life, with friends and independence. I looked at my daughter and realized that she will be just fine. She is a very determined little girl and has a way of just figuring out life so it works for her. We are blessed by this child, who is happy and cares so very much for those around her. The trick is to find the way into her brain to teach/show her ways that will allow her to process things easier, with less stress.

Can you imagine living every day with thoughts and ideas to share and the inability to do so? I can’t but I know that my daughter, Amber, can. No child should feel this way. Can you imagine how difficult it is for these lovely Autistic people to handle all that the world today throws their way? They are over stimulated into overload every day. We are asked a question; we process it quickly and come to an outcome to be achieved. These autistic persons need to process what their environment is, how it is affecting them, the words that they hear, the background noise, their body placement, and then they can get to what the outcome can be. If the lights make noise, the TV is on, they are hot, the floor is slippery, they can overload and it an delay their responses. They need added time to get to where we need them to get to. So we get impatient and ask again or in a different manner which starts the process over for them. How frustrating! They may look just like a typical (whatever that is) person, no tell-tale features or attributes that give away that they can’t process as we do, which adds to difficulty in the “real” world.

If we take a little extra time, slow down our world just a little bit for them, remove some of the stimuli that surround us, imagine how much better we would all communicate and feel: Less stress and less frustration.

These autistic people are our early warning system that too much is happening in our world today that we need to slow down and smell the flowers a bit more. Get away from all the technology for a few minutes each day. It does not need to be cured for those that are gifted with this disorder but understood and accepted. It would be wonderful to prevent this for future children and that should be a goal. But for today, let us embrace it and work with autism to find a way to bridge the gap to the “real” world. If you open your heart to a person with autism and change your expectations, are patient and calm you will find some of the kindest, warmest and most gentle souls that have some of the biggest contributions to make to mankind.

I LOVE A PERSON WITH AUTISM AND I AM SO PROUD OF HER! She is the reason that I walk for Autism.

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 is a special post by Athena Leskun, a photographer. Athena shares about her relationship with a special little girl and why she will be taking candid and team photographs at the 4th Annual BC Walk Now for Autism Speaks.

In the beginning of 2007, I reconnected with an old high school friend named Shawn and was introduced to his fiancee Samantha. Samantha and I instantly connected and have been great friends ever since. We share a lot in common including having our oldest kids a year apart.

I knew that Samantha’s daughter Callista had Autism, but to be honest, I never knew what Autism was exactly. I spent a lot of time with Samantha as we both were pregnant with our second babies. I used to bring my son Brodie around in hopes that him and Callista could play together, but I could never understand why it never worked out. Samantha then explained to me how Autism affected Callista’s life. Immediately I went home and did some research on the web. I couldn’t believe what I was reading. The number of children affected by Autism is unbelievable.

As the years pass, I have come to understood Callista’s life. Callista is a beautiful child. She has a laugh that you can’t help smiling at and is so intelligent with electronics. Going out with Callista was a learning curve for me. It was difficult to see the realness of having a child with Autism. At times Callista is outraged, scared or stressed and I see my dear friend do the best she can to control the situation. The hardship of having an Autistic child can sometimes be seen on my friends face, but I’ve said it to her many times and I’ll say it again. I am very proud of her for being such a great Mom and providing Callista with love, support, patience and understanding. If I had to step into her shoes for a day, I don’t know if I could do it. It takes a special Mom and a special connection to deal with having an Autistic child. It’s non-stop commitment.

I am a professional photographer and have had a chance to photograph Callista. I have caught some beautiful moments on camera for Callista and her family – a true relief since school photos never turned out because Callista was always uncomfortable. Callista giggled on camera and posed perfect! The environment that was created just for her was what she needed.

It has been 5 years of knowing this beautiful little girl. I feel so grateful to have been given the opportunity to open my eyes and learn about Autism. Since then, I have learned of others close to me affected by Autism and a lot more being tested in fear.

It is my pleasure to be a part of the BC Walk Now for Autism Speaks walk happening at Nat Bailey Stadium on September 25, 2011. I will be offering my photography services to the public by taking candid and team shots of the event. I look forward to meeting those involved and the teams that have dedicated themselves to raising funds to research Autism.

I wish everyone a successful walk to help find the meaning and cure for Autism.

This week our blogger Zara writes about the end of school transition.

This week was rough on my son, I don’t think he understood what school ending meant.  Being his first year of school I don’t think I prepared him enough.  The day they sent his stuff home he was insisting that we had to take it back to school the next day.  I didn’t even think that he would need to be preped for the last day of school; it doesn’t mean school is over forever and he gets the same teacher next year, but I was wrong. 

Often I find it’s easy for us to miss what our kids need help with because life is easy for us.  It is so hard to know what they need us to guide them through especially if they themselves can’t articulate their needs.  I could blame myself for yesterday as I’m not perfect, by far, I’m just a mom who’s trying her best. 

I’ll try my best next week when I prep him for camp.  He’s going to a new camp, with new teachers.  I’m really nervous but perhaps I can learn from this week and put more effort into helping him transition to camp. 

On a plus note we are going to see fireworks tomorrow which will be the highlight of his week for sure. 

Happy Canada Day! Be safe and have fun!

Edmonton autism researchers join North American network

Opportunity to better address needs of children with autism spectrum disorders

Autism researchers and clinicians at the Glenrose Rehabilitation Hospital are now linked to hundreds of their counterparts across the U.S. and Canada since joining the Autism Treatment Network (ATN) , a prestigious U.S.-based research initiative, this month.

The Glenrose, together with the Stollery Children’s Hospital, was recently awarded a grant of $417,000 over three years by the ATN to work on improving standards of medical care for children with autism spectrum disorders (ASD), a complex, neurobiological condition that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by behavioral challenges.

“We are really proud to be associated with the Autism Treatment Network,” says Dr. Lonnie Zwaigenbaum, Co-director of the Autism Research Centre at the Glenrose.

“The funding of an Edmonton site reflects on the excellence of our clinical and research programs supporting children with autism spectrum disorders. Being part of the Autism Treatment Network gives us the opportunity to better address the medical needs of children with ASD in a more coordinated and comprehensive way.”

Making decisions based on sound research and evaluation is among the goals outlined in the
5-Year Health Action Plan, jointly developed by Alberta Health Services (AHS) and the Government of Alberta and supported by the province’s 5-Year Health Funding Plan.

ASD is the fastest-growing serious developmental disability in North America, currently diagnosed in one in 110 children, affecting four times as many boys as girls. Its causes are unknown; however, research indicates lifelong interventions can result in significant improvements.

The ATN pools the expertise of more than 200 practising physicians, nurses, specialized therapists, behavioral specialists and clinical researchers at 17 leading children’s hospitals and academic medical centres. The Glenrose is only the second Canadian ATN site.

The network is a project of Autism Speaks, a not-for-profit group whose mission is to change the future for people who struggle with ASD. The group funds research into the causes, prevention, treatments and finding a cure for autism, as well as raising awareness, and supporting family services and advocacy programs.

Edmonton resident Tami Alger believes the sharing of knowledge within the network will positively affect the treatment her six-year-old daughter receives at the Glenrose.

“The Autism Treatment Network will help create a coordinated and holistic link between our daughter’s autism and all of her other medically complex needs,” says Alger.

“It will help in putting together all the pieces of her puzzle.”

Autism Speaks raises funds through corporate partnerships as well as through its North American Walk Now program, held in more than 80 locations across Canada and the U.S.

“We are very proud of the world-class research being led by Dr. Zwaigenbaum and his team,” says Suzanne Lanthier, Executive Director of Autism Speaks Canada. “Our annual Edmonton Walk event raises money to help support wonderful research initiatives like the ATN.”

In 2010, Autism Speaks Canada funded close to $70,000 in community grants to local agencies working directly with children, youth, adults and families in the Edmonton area.

For more information, visit the Autism Speaks Canada and the Edmonton Walk Now for Autism Speaks websites.

Alberta Health Services is the provincial health authority responsible for planning and delivering health supports and services for more than 3.7 million adults and children living in Alberta. Its mission is to provide a patient-focused, quality health system that is accessible and sustainable for all Albertans.

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 special guest post by Jen and Scott Chataway, members of Connor’s Cool Cats! They will walk this Sunday in the Toronto Walk Now for Autism Speaks Canada.

The Chataways

We stumbled across the Autism Speaks Canada website quite by accident. Shortly after our son Connor was diagnosed, we were researching a place for private IBI therapy. After a quick chat, we signed up, called the office for pledge forms and started building a team and fundraising.

The first year, we missed the actual walk day, but Scott met with Suzanne Lanthier, Executive Director of Autism Speaks Canada. They had a great chat, and we’ve been involved ever since. We walk for a variety of reasons, which seem to change from year to year.

The first year, we wanted a place to fit in and belong. A place where we weren’t alone, a place where we felt our family was safe and accepted.  We wanted to find a way to feel like we were making a difference and not sitting by idly.  We walked for hope.

The second year, we had our son on a leash as I was terrified he was going to run off, terrified that he would have a meltdown.  But the route was short and we had our family and friends with us, and the lease came off pretty quickly as it was driving our son crazy!  He didn’t run off, and seemed to have a good time.  We brought our own snacks as he wasn’t eating much, and it had to be the perfect, mushy texture. We didn’t participate in anything. We just walked and left. 

The third year, we walked, leash-free and I even let Connor run around with his brother.   We met some friendly faces along the route.  My older son Colin was a bit upset that we didn’t get to visit all the activities because Connor was done and we had to go. I was the one with the meltdown, but had the support of family and friends. Connor ate a bit of the snacks provided, and he had a great time. 

Connor's Cool Cats

Last year we walked, leash-free, had the same snacks as everyone else.  Connor walked and rode in a wagon with a friend.  We socialized with family and friends we met along the way.  We stayed and enjoyed the event and the kids visited all the booths and activities that they wanted to.  Colin raised $1200.00 on his own going to door to door in our neighborhood, beating me into the Grand Club!  We had a great time.

This year we walk because it’s a great, safe, fun family event. We walk to raise awareness and to raise money for much-needed research.  We walk to feel part of a community.  We walk for all the newly diagnosed families looking for answers and a place to feel ‘normal’.  We walk for our kids’ future.