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11/15/2012

Is there an autism epidemic?

The U.S. Centers for Disease Control and Prevention says 1 in 88 children is now diagnosed with autism. We asked autism experts the question: Is there an autism epidemic? One of Canada's leading researchers in autism had this to say:

Dr. Evdokia Anagnostou, child neurologist, clinician scientist, Bloorview Research Institute; assistant professor, department of pediatrics, University of Toronto:

There is no doubt that the rate of diagnosing autism spectrum disorders (ASD) has been increasing . . .

The question remains whether the increase in the diagnosis is due to a true increase in the incidence of autism spectrum disorder (the true risk of developing ASD) or whether other methodological factors account for this increase.

Possible culprits include changes in the diagnostic criteria, making the diagnosis earlier and earlier so that younger kids are included in the numbers, diagnostic substitution (we diagnose more ASD now than global developmental delay or language disorders compared to one to two decades ago), and increased awareness of the diagnosis, so that teachers, parents and front-line clinicians are more likely to look for signs and symptoms of ASD. All of these would have been predicted to increase the number of children diagnosed, and have been shown to do such in various studies.

The question still remains, after all of this is accounted for, is there a true increase in the incidence of the disorder?

We do not know the answer to that yet, but that does not mean that we should not be investigating this possibility. Specifically, although we know that ASDs have a strong genetic component, and we absolutely need to understand that more fully so that we can understand the biological paths that may be potentially targets for treatment, there are factors within and out of the human body that influence the degree of gene expression.

In other words, although children with autism carry genetic variations that either cause ASD or increase the risk of ASD, there may be interactions with the environment, whether this is the environment around conception (e.g., recent data related to paternal age), fetal environment or the environment outside of the body that may influence how these genes ultimately affect the function of brain and other biological networks.

As such, studies of the epidemiology of ASD, as well as our genome and gene-by-environment relationships, are still critical to fully answer this question.

Loving a kid like Jaden

Conservative MP Mike Lake and his wife Debi first noticed something was amiss with their son, Jaden, when he was 1-and-a-half years old.

He didn’t speak and he was preoccupied with organizing his toys. Lake will never forget the time Jaden, then a toddler, was handed all the letters in the alphabet and he organized them starting with the letter “Z” and he worked backwards to the letter “A.”

 The Lakes felt Jaden was autistic.

When the diagnosis came, it “wasn’t a big shocker,” Lake recalls. The family was lucky enough to squeeze Jaden into a provincially government funded program that gave him 36 hours a week of one-on-one treatment.

Now Jaden is 17 and he attends high school with a full-time aid.

“But he is like a 3 or 4 year old inside a teenager's body,” says Lake (Edmonton-Mill Woods-Beaumont.)

Lake seemed ambivalent to the creation of a national strategy to combat autism. He is looking forward to a stronger definition of autism that is due to come out next year with the release of the fifth edition of the Diagnostic and Statistical Manual of Disorders. A better definition will lead to more kids getting treatment, he feels.

Jaden still doesn’t speak but he does communitcate through sounds.

Lake has made it his mission to introduce Jaden to the lawmakers inside Parliament and expose them to what autism is all about.

He often brings his son to his office at the House of Commons and he has given many, passionate speeches on the need to better take care of autistic children. Just last September, Lake spoke to a special World Focus on Autism special gathering in New York City. The even was organized by spouses of United Nations diplomats. (http://www.mikelake.ca/news.aspx?pID=1587)

Lake knows it is unrealistic to expect that one day his son will be able to live on his own.

“But we don’t discount he may have reachable progress,” he says, adding Jaden loves to cook, follow recipes and make chocolate-chip cookies.

“We aren’t going to get ahead of ourselves. We tend to take it day by day,” he says.

Lake is not surprised the autism rates are 1 in 88 and that for boys it is 1 in 54.

“But it is still a mystery. Still. We have a lot to learn,” says Lake.

His son sometimes suffers from anxieties in the evening.

“Sometimes, I lay in bed with him at night and I look in his eyes. We communicate without speaking.”

Before Jaden, the thought of having a child with special needs terrified Lake.

“Now, I can’t imagine loving a kid more than Jaden. I didn’t expect this. I love what he is able to achieve. It is just – different.”

-- Tanya Talaga

 

 

 

Q&A: Maxine Share, a proud mother of a son with Asperger's

In an earlier post, the Toronto Star Autism Project blog shared a Q&A with Daniel Share-Strom, a 22-year-old public speaker and advocate who has Asperger Syndrome. When Share-Strom spoke at a convention in Toronto last month about navigating the world of work, he talked about what a crucial role his mom had played -- and probably made a few people tear up in the process (ahem). We caught up with Maxine Share, ShareDaniel's mom, to chat about being a parent to a young person who is trying hard to break into the workforce, an uphill task with or without Asperger's. Share is also a consultant for Kerry's Place Autism Services, where she helps advocate for families. 

What are the biggest worries and complaints you hear from parents of children with ASD?

Friendships.  Futures. These are the areas that cause parents to lose sleep.  Establishing and maintaining friendships can be hard for kids with ASD, and the social isolation can be wrenching for both the child and the parent who is watching him suffer.  The biggest complaint? That’s easy: having to explain your child’s needs at every turn to service providers and educators who may not seem to share information from year to year, or who don’t share the most relevant information.

I’m sure there’s a lot that needs fixing, but is there one major fix that could help parents that doesn’t exist now? 

I hope we continue to  find better ways to support our children with ASD in the schools.  I would start by making it mandatory that anyone who teaches children on the spectrum should have additional qualifications.  At the moment, teachers are not required to have any special training in order to take on a student with ASD.  Having said that, I’d take a teacher with a great heart and an open mind any day over a specialist who is inflexible.  I love teachers!

Many parents of children with ASD cite independence as their number one goal for their kids, and employment is the road to achieving that. What is it like watching your son become an adult and enter the workforce?

My little boy who sat and rocked and chewed his shirt and was so painfully shy that he would be mute when friends approached, may have surpassed the expectations of others, but not of me. He told me when he was a little boy that he wanted to go to university, and I knew he would — my challenge was to find a way to get him there. When he was two years old, he sat through an entire dinner trying to pick up a slippery mushroom with a pair of chopsticks.  Never complained, and maybe half-an-hour-later — ta-da!!—he popped that mushroom into his mouth. That’s Daniel.  He will get where he wants to go because he never gives up.   

 What can parents do to help their kids along the path to getting a job?

I would love to see all kids have a Life Coach. This is someone who can help them to avoid the social, academic, and life-skill pitfalls that can trip them up.  I encourage parents to hook them up with great mentors along the way who can help them acquire the necessary skills to be successful in finding a career, looking for work, presenting for an interview, and then maintaining employment.  I’d love to see school work on this model as well.

What one thing do you wish employers knew about people with ASD? 

I wish they knew that employees with ASD are loyal, hard-working, focused, and care deeply about doing a good job.  Many are brilliant: give them room to shine, and you can bask in their reflected glory!

11/14/2012

Q&A: Daniel Share-Strom, a 22-year-old with Asperger's, about finding a job

Daniel Share-Strom is a 22-year-old student in his last of year of an honours Communications degree at the University of Ontario Institute of Technology. Share-Strom has Asperger's, a high-functioning type of autism. At last month's Geneva Centre autism symposium in Toronto, he charmed at least one reporter in the audience during a panel session on navigating the world of work. Share-Strom spoke frankly about his struggles and triumphs on the path toward finding a job -- which is indistinguishable from the path toward independence, for most adults. The Star emailed him some questions which he took the time to answer in between a busy day of classes.

Share-StromShare-Strom (right) probably prompted some teary eyes in the audience when he spoke about how much his mother, Maxine Share, has done for him. We'll feature a Q&A with her in another blog post.

You’ve found a couple of really interesting jobs. What are they?

I worked at my mother’s retail store for many years, but more pertinently, I am a professional public speaker and Asperger’s advocate and educator.  I haven’t been successful in getting interviews for those part-time student jobs that many of my peers work at.  Soon, I will be helping to edit my school’s peer-reviewed journal.  I’m also writing a screenplay about Asperger’s Syndrome.    I’ve had to make my own luck, so to speak.

How did you get those jobs?

Working at my mother’s store?  Nepotism.  Public speaking?  From a very young age, I was able to be my best version of myself when I had a microphone in my hand.  My mother nurtured this gift and found speaking opportunities for me wherever possible.  When school issues started to dominate, she combined my love of technology with my love of public speaking, and my public speaking career was born.  We created a presentation to tell my teachers how I learn and what I need to do well.  With regard to my editing job at school, my professor approached me and offered me the opportunity.


You spoke candidly at the conference about some of the challenges you’ve encountered while looking for a traditional, nine-to-five job. Can you tell us about those challenges?

The main issue is the way that the people receiving my resume perceive me or the way I carry myself.  I am highly qualified, on paper, for the jobs I apply for, but it seems that, perhaps, my eye contact, gait, tone of voice, and physical presentation must be communicating something about me that makes them decide not to consider my application.  I’ll be honest: It doesn’t feel too great.


You say you’re now looking at entrepreneurship as a career option. Why?

Entrepreneurship is an option because I can create a work environment that allows me to be successful and not feel under the microscope for things that do not come naturally to me.  Self-employment can allow me to support myself, but more importantly, this option can allow me to maintain my dignity and surround myself with people who accept me for who I am and what I can do, not what I cannot.


What’s been the biggest help along the path to employment?

The most important thing that every individual on the spectrum needs is a life coach.  A life coach can teach them those essential social and workplace skills that will help them avoid the pitfalls that result in the incredibly high unemployment rates of individuals on the spectrum.  For most people, life coaching falls to their mother, but as a society, I would encourage schools to pitch in here.


What’s been the biggest barrier?

The biggest barrier to employment has always been the kid behind the counter.  In other words, give us a chance to succeed or fail based on our abilities, not on my eye contact.  People with autism are incredibly bright.  With the kind of intense focus and interest we bring to our areas of expertise, I fully expect one of us to find the cure for cancer one day.


What do you want employers to know about people with ASD?

I cannot speak for all people with ASD.  Like every other human being, we have gifts and challenges, strengths and needs.  We love, we cry, we experience joy.  Sound familiar?  We are human beings.  We have a lot to offer.  Please treat us with the same dignity and respect you would like to receive.

What do you want people with ASD to know about employment?

I think it’s important for all people to know themselves in order to find their place in this world.  That’s even more important for someone with ASD.  However, we’re not great at identifying our own weaknesses or areas of need.  Again, I urge my ASD peers to find a life coach that they trust and allow that person to help them navigate the world of employment.  Whether that means finding a career path or preparing for a job interview, we need to reach out and ask for help.


Anything else you want to tell our readers?

With all the money that school boards are spending on ASD, they’re missing the mark.  Thousands of so-called high-functioning kids on the spectrum are unhappy and unsuccessful in their school setting.  I want those kids to know that it gets better.  There is more understanding at the post-secondary level.  Hang in there.

Is there an autism epidemic?

The U.S. Centers for Disease Control and Prevention says 1 in 88 children is now diagnosed with autism. We asked autism experts the question: Is there an autism epidemic? Here is a response from one of our political leaders:

Mike Lake, whose now 17-year-old son, Jaden, has autism, is Conservative MP for Edmonton-Mill Woods-Beaumont:

I’ll leave that question for the scientists to answer. But when you are looking at those numbers I would certainly say that there is a combination. We are doing a better job of recognizing it. So there’s a better job of diagnosis. So that certainly plays into those numbers. But I do believe — and I think if you talk to most families that live with someone with autism — that we would recognize more of it in society as well. So I think you are seeing a combination of the two.

We need to continue with the momentum that we are building. Right now for example in Canada we have some of the best researchers in the world. Talking to Jonathan (Weiss, recently appointed Canadian chair in autism research), I have no reason to believe he won’t be another one of those researchers. There is some phenomenal research going on right now. You see Stephen Scherer in Toronto on the Autism Genome Project, really taking a leadership role worldwide with that. Someone like Lonnie Zwaigenbaum and Susan Bryson. That list is long and it’s getting longer all the time . . .

Then there is the treatment side of things. And of course most of the treatment in this country falls to the provincial level, so a big part of the equation is getting out to the provincial elected officials and first of all educating them on what autism is because I still don’t think everybody understands exactly what it is and what the challenges are . . . (Then) they can make the right decisions in terms of funding for not only treatment for kids, which tends to be a big focus, but recognizing that autism is a lifespan issue. People with autism live just as long as you or I . . . so there are transitions into school, out of school into the work environment. And then housing challenges and what happens with these kids that become adults that become seniors when we’re gone as parents. That’s a question that all parents grapple with.

11/13/2012

The bullying problem

Bullying affects children with autism far more often than other kids -- and it was a common theme in many of the stories families shared with the Star when talking about their experiences in the education system.

In fact, a recent study of 920 families reported in the Archives of Pediatrics & Adolescent Medicine, found that almost half of autistic teens have been victimized, which is "substantially higher" than the average bullying rate.

"Future interventions should incorporate content that addresses the core deficits of adolescents with an ASD, which limits their verbal ability to report bullying incidents," said the study, led by Paul Sterzing, who is now at the University of California at Berkeley.

"Schools should incorporate strategies that address conversational difficulties and the unique challenges of those with comorbid conditions."

The study's authors also suggest that integrating students with autism into regular classrooms boosts understanding and empathy in the class.

There are no specific bullying prevention programs to help those with autism, says Wendy Craig of Queen's University, a leading expert in bullying in Canada and a leader of PREVNet, an anti-bullying coalition. (The name stands for "promoting relationships and eliminating violence network").

She says that there is research showing that there is an awareness of bullying of ASD students.

Studies have said anti-bullying programs for both students with and without ASD are needed.

York University professor Jonathan Weiss was recently awarded a five-year research chair to look at mental health issues for those with autism, and in part will look at how bullying can affect their lives.

A small 2011 study he co-authored found as many as 77 per cent of families report their child had been bullied within the past month, double the average rate.

Bullying can increase stress and anxiety in children with autism, and lead to more self-harming behaviours.   

How one teen with autism beat the bullies

Jacob Wilson was diagnosed with autism when he was 4 and was non-verbal until age 5. His struggles to communicate for most of elementary school and his classmates' perception he was getting special treatment, made him a target for bullies. By Grade 8, the weekly beatings from bullies led him to attempt suicide.

After a short stay in hospital, the Vaughan teen spent most of Grade 8 at home. But he used his time well.

"I made the decision I was going to teach myself to talk," says Wilson, now 18, who listened to voices in video games and practised pronouncing what they said.

"I used what I love to help me catch up."

When Wilson entered St. Joan of Arc Catholic Secondary School things began to change. In Grade 10 Wilson surprised even himself when he memorized "In Flanders Fields" and recited it in front of 1,800 fellow students at the school's Remembrance Day Ceremony.

"Everyone was in awe that I could do it," he says proudly. "I still remember it to this day."

Before long, Wilson was taking turns reading the morning announcements and participating in the school musical.

"I started meeting so many people. I made friends who were my peers. And I kept pushing myself to talk to people."

By Grade 12, Wilson and his best friend entered the Sears Drama Festival and he had a co-op position working behind the scenes with Rogers TV in Barrie.

"After eight years of being bullied, I was something that I had never been -- popular," he says.

Wilson credits the psychological help he has received through Kinark Child and Family Services for many of his high school achievements.

Last summer, he spoke about his transformation at Kinark's annual meeting. The experience has led to Wilson's new role as a guest speaker on autism.

He especially likes to speak to students.

"I tell them autism is a disorder you are born with and there are many different forms," he says.

"But I show them that for people with autism, there is always hope for them to be better than what they are."

Wilson is living proof.

"I was bullied for eight years of my life, almost commited suicide, changed my life around dramatically, and now I am loving life."

Toronto star

Jacob Wilson, 18, who had difficulty speaking in elementary school, now reads the morning announcements at St. Joan of Arc Catholic Secondary School, participates in school shows and spreads the word about autism as a guest speaker for Kinark Child and Family Services.

Teachers awarded for tablet technology research

 

Carroll- autism
Stacie Carroll and Sabrina Tayebjee Morey are all smiles after receiving awards for research that helps students with autism. (Steve Russell, Toronto Star)

Stacie Carroll and Sabrina Tayebjee Morey are teachers at Toronto's Beverley School, a school that serves special needs students.

They're now also Prime Minister teaching award winners because of their groundbreaking research into how tablet technology can be used to reach non-verbal students, particularly those who have autism.

The two were celebrated at an assembly at the school Monday afternoon, with about 150 students, staff and parents cheering them on. MP Olivia Chow presented their awards. Both Carroll and Morey -- who is off on maternity leave, and brought her 3-month-old daughter -- were given flowers by two young students. 

Here's an excerpt from a nomination letter written by Sarah Patterson, mom to 5-year-old Landon, who was on the front page of Monday's Star because of the amazing strides he has made using an iPad:

"We are fortunate that our son was placed in Stacie’s classroom. Stacie has an extremely extensive knowledge base regarding touch technology and their applications for children with special needs. In the special needs community, Stacie is well known for this expertise.

"The knowledge that Stacie has acquired in this area has allowed children to communicate when they previously were unable, or did not possess any skills to allow them to communicate. 

"She has given our son a voice. My son has not been able to communicate with anyone and has become quite frustrated when we do not understand him or when he is unable to communicate his needs. He also became quite passive in general as his attempts to communicate were not understood and not reinforced. In a very short time with Stacie, my son was able to identify pictures and words on a device and has learned to communicate with everyone. Stacie focuses on family-centred care initiatives and generalizes what she teaches our son into our home. I can honestly say our experience with Stacie has changed not only my son’s life but my family’s as well."   

Is there an autism epidemic?

The U.S. Centers for Disease Control says 1 in 88 children are now diagnosed with autism. We asked autism experts the question: Is there an autism epidemic? Here is a response from one of the world's most accomplished and well-known high-functioning autistic adults:

Temple Grandin, animal sciences professor at Colorado State University, author and livestock industry consultant on animal behaviour:

Mild autism or Asperger’s has always been here. I’ve worked in a technical industry for 40 years and . . . they’re everywhere. They just used to call these people nerds before . . .

One of the things that helped them (succeed) is that in the 1950s, they taught social rules. Kids were taught table manners, how to shake hands, how to say please and thank you. That was just taught to all children in the ’50s. So they were better able to cope in society.

However, I think severe autism — where children remain non-verbal into adulthood — has increased. I don’t think the total increase would be just the previously undiagnosed Asperger’s. That would probably only be half of it.

Environmental contaminants could be one (explanation). Older parents could also be a factor. One of the problems that a male has is that when he gets older, his sperm has to be copied every two weeks. He makes a copy of a copy of a copy. So as he ages, you get copying mistakes. Women have all their eggs from birth. They are not copied constantly . . .

Kids (today) don’t get enough exercise, they don’t have enough omega 3 in their diets . . . In the ’50s we ate a lot more wild fish. Also, there is more mercury and solvents in the environment.

The other thing is there are a lot more psychiatric and other types of drugs taken during pregnancy. Epilepsy drugs, anti-depressant drugs, a lot of these drugs weren’t taken during the ’50s.

 

 

11/12/2012

Mental health and autism, one teen's tragic story

Jarrett with computer (2)

Photo of Jarrett Borstscher and his "broken computer." Borstscher, who has Asperger syndrome and catatonia, was found dead in September. (Family photo)

At last week's York University announcement of a new $2 million research chair in autism and mental health, MP Mike Lake (PC--Edmonton-Mill Woods-Beaumont) read a heart-breaking letter from an 18-year-old Edmonton teen with autism suffering from mental health problems.

Jarrett Borstscher went missing from his parents' home in late September and was found dead in the North Saskatchewan River several days later.

Borstscher had Asperger syndrome, a high-functioning form of autism as well as catatonia, a condition that causes sufferers to fall into a trance-like state. As Lake noted, adolescents with high-functioning autism are acutely aware they are different from their peers and this can cause depression and other mental health problems.

Borstscher had been in hospital receiving youth psychiatric services for about 18 months but was discharged in June. He was awaiting transfer to adult services when he went missing.

A few weeks before Borstscher died, he wrote about what was happening to him and his parents encouraged Lake to share it in the hope that it would help others:

"I am a broken computer.

"Some of the circuits in me may still contain useful memory . . . while other circuits were simply blown. I'm there, just tangled up. The RAM has difficulty. The screen may display little or nothing at all, though nonetheless there is some activity.

"I was once an explorer of the internet: gathering information and useful knowledge from all areas in life to process and become stored... Useful data may still be looming in my old dusted internal hard drive circuits, though their access is largely cut off by fractures in the circuitry that connects to it...

"How did I become broken? It all started with the screen freezing, and went downhill to a crashed, bricked hard drive. Though a good shock reversed the brick situation, the CPU functions at lower capacity than before and requires continuous maintenance. Slower processing speed and frequent errors are examples of the aftereffect. Hopefully I will still be useful in some way to the world.

"Explanation:  I'm mentally unstable as a broken computer would be unstable. I have catatonia and had catatonic seizures which are like frozen, bricked computers. The freeze (something that made me stop going to school) started at the end of Grade 10, and I got into a fully catatonic state halfway through Grade 11. Electroconvulsive therapy (ECT) at a hospital has jolted me out of my catatonic state, but I require medication to rehabilitate from the life-altering event.

"I have anger blow-ups like blown circuitry. I often went to video game tournaments with a philosophy based off Sun Tzu: The Art of War.  My "RAM" is bad in that I always forget the right thing to say until it's too late, as if glitches and errors occur in my brain.  Nonetheless I have nostalgic memories of the past, like spurts of old knowledge from within cut-off circuitry.

"In the past, I often browsed every corner of the internet to learn about science, human culture, geography and more; I also liked to read scientific studies about human health and nutrition, which all relates being “useful data.”

"My focus and concentration ability is severely hindered; slow processing speed. Medications alter me to the point of not being myself: before I was catatonic, I was fine and doing well all through Grade 10. I hope the dreams I once had will still be possible to reach.”

Lake said he hopes the new five-year research position awarded to Jonathan Weiss, an assistant professor in York's  psychology department, will help others like Borstscher.

The Autism Project

  • Welcome to the Toronto Star's autism blog, a daily amalgam of breaking news stories, features, trends and ideas flowing from our Autism Project. The blog is written by Star reporters: Kate Allen, Andrea Gordon, Laurie Monsebraaten, Kris Rushowy, Leslie Scrivener, and Tanya Talaga.

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