What in the World Is Going On May 2013 Edition

Autism Awareness Centre Inc.

A story that’s grabbing headlines this month is the Telford’s struggles with their adult son who has severe autism. Amanda Telford left her son at the Ottawa offices of Developmental Services Ontario, the Ontario government agency that connects adults with disabilities to services in the community because she said she can no longer care for him. Phillipe has complex needs and requires 24 hour supervision. The long waiting list for residential placements leaves families like the Telfords trying to manage on their own at home. Amanda Telford, social worker, said she and her husband ... more »

Air travel made easier for children with autism

MINNEAPOLIS, Minnesota (KARE) — Travel can be stressful for anyone, but for kids with autism, crowded airports and security screenings can be downright scary.

Since the beginning of the year, Minneapolis-St. Paul International has been part in a new program to help the kids prepare for air travel.

For the Nielsen family, the already overwhelming adventure at the airport brings additional worries... more >

What in the World is Going On April 2013 Edition

April is Autism Awareness month. April 2nd marks World Autism Day, which was created by the United Nations in 2008. Autism Speaks celebrates this day with their Light It Up Blue Campaign. Check out their blog which gives daily updates as they count down until April 2nd. See how people around the world are planning to light it up blue to raise autism awareness. And speaking of Autism Speaks, they just launched their Employment Tool Kit. The creation of the kit started back in June 2012 with an employment Think Tank which captured the current state of employment for adults with autism... more »

Autism Awareness Centre Inc.

New Gene Variants Linked to Autism

In one of the largest-ever studies of genetics and autism, researchers have identified 24 new gene variants associated with autism spectrum disorders (ASD). The work also confirms that 31 variants previously linked to the developmental disorder may serve as useful genetic markers for identifying those with the condition.

Understanding autism’s genetic roots is a priority, researchers say, since it may lead to earlier diagnosis and behavioral intervention, which can improve patient outcomes.

“Oftentimes findings like this get published in academic journals, but they don’t get translated into clinical use,” says Chuck Hensel, an author on the new research study, published in PLoS ONE, who is the senior manager of research at the genetic diagnostics company Lineagen. “Our goal,” Hensel says, “is to try to get these markers into the clinic.”

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Farewell to Aspies: Some families reluctant to let go of Asperger's diagnosis

Linda Federico-O'Murchu
TODAY.com

The news that the term “Asperger’s syndrome” will soon cease to exist has some parents concerned – especially parents raising “Aspie” children.

Starting May 2013, the American Psychiatric Association’s new diagnostic manual, known as the DSM-5, will go into effect, stripping the well-known condition – a condition sometimes associated with loner geniuses like Albert Einstein and Andy Warhol -- of its name.

Instead, Asperger’s syndrome will simply be known as ASD-Level 1 (mild), a top rung in the ladder of autism spectrum disorders. For those who viewed an Asperger’s diagnosis as light-years away from clinical autism, this new classification may feel like a fall from grace...
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How and when do you tell a child about their ASD diagnosis?

Autism Awareness Centre Inc. 

Answer: There are a number of frequently asked questions around when you should tell a child about their ASD diagnosis. How do you tell a child about their diagnosis of ASD? Is there a right age? How do you know when the child is ready to hear the information? It is recommended not to start this process before the age of 7. Children under that age generally don’t have enough understanding to grasp what autism is all about. When parents feel anxious about wanting to talk to their young child about autism, I usually suggest they begin with celebrating differences and building pos... more »

What in the World is Going On January 2013 Edition

Written by Maureen Bennie  |  Autism Awareness Centre Inc. 

The big news this past month was the finalizing of the DSM-V which will be published May 2013. There was much discussion around the possibility of Asperger Syndrome no longer being classified as a separate diagnosis. Asperger Syndrome will now be a part of Autism Spectrum Disorder (ASD), a new term added to the manual. ASD is a term already used by many experts in the field. The new category will include individuals with severe autism, who often don't talk or interact, as well as those with milder forms. Catherine Lord, an autism expert at Weill Cornell Medical College in New York... more »

Characters with autism getting prime spots on major TV series

NICK PATCH  |  The Canadian Press

When Parenthood creator Jason Katims created the character Max Braverman – an intelligent, inscrutable, insect-obsessed youngster with Asperger’s – he had in mind his own son, Sawyer, who was similarly diagnosed.

But while many are absorbed in the travails of the mop-topped Max on the generously open-hearted family TV drama, Katims’s own teenaged son isn’t among them.

“Everybody else in the family watches it but he doesn’t,” the Emmy Award-winner said in a recent telephone interview, chuckling softly.

Fortunately for Katims, millions of other people are playing close attention – particularly those with a loved one on the autism spectrum.

And those numbers are growing. One in 88 American children has an Autism Spectrum Disorder (ASD) according to the U.S. Centers for Disease Control and – while no federal monitoring system exists in Canada to provide a similar rate of prevalence – ASD is the most common childhood neurological disorder or severe developmental disability here. (A controversial decision was recently made to fold Asperger syndrome, a type of high-functioning autism, into an umbrella diagnosis for autism spectrum disorder, but the families interviewed for this story largely used the terms interchangeably.)

Television can often be painstakingly slow to adapt to such shifts in demographics. But it’s clear that some of the challenges faced by the autistic population have captured the imagination of TV writers, who are increasingly penning eccentric characters whose quirks would seem to align with typical characteristics of ASD on shows including The Big Bang Theory and Bones.

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In autism, there's no such thing as a simple shave and a haircut

Liz Becker

I tried taking my autistic son, Matt for professional hair care, but I soon found that there was no such thing as a simple haircut. Matt, not wanting to sit in the chair, put on the apron, or watch a pointed object approach his head, would struggle and fight through the entire process. I finally decided I would have to attempt to cut his hair myself. I hoped that maybe being in the comfort of familiar surroundings of home, that maybe, just maybe, we could be successful.

I talked him into sitting in the chair and even in wearing the plastic drape, but all that cooperation disappeared when I got out the scissors. As I tried to trim his hair Matt would unexpectedly jut his fingers up between the blades of the shears in an attempt to stop the process: he squirmed, twisted, his hands in constant motion the entire time. He especially hated the sound of his hair being trimmed around his ears - his hands again flying upward to cover and protect them. It was exhausting, for both of us.

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Autism and the ultimate goal: independence

Liz Becker

Navigating autism takes time – lots and lots of time. It took until Matt was almost 5 years old for speech to come, and then it was very few words for years after. It took almost 7 years to get out of diapers and almost 9 to completely be potty trained without the occasional accident. It took until he was almost 7 years old to get use to a change in routine, to age 12 to agree to try a new food item, and he was somewhere in his early teens when he started to pick out his own clothes. Autism slows down progress, but the good news is that it doesn’t stop progress. Doing something new just takes more time to learn.

I was never in a hurry – except for speech. Speech has a window of opportunity, so we pushed him to speak. Matt saw a speech therapist from his diagnosis at two and a half years old to his day of graduation from high school at 19 years old. Everything else was mostly accomplished with a bit of steady pressure and a great deal of time. Matt was given equal time to flap his hands and spin his toys and time to focus on learning something new.

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Occupational therapy, autism and tactics of self-regulation

Brian Field

Occupational Therapy, or “OT,” is frequently incorporated into autism therapy regimens to help, among other things, stimulate a balance between the body and mind that can help focus the child. For example, a child may be easily distracted while sitting in a regular classroom chair. When the chair is replaced by a large exercise ball and the child now needs to maintain his balance while sitting, the child’s mind becomes more attuned – focused in part on balancing, more aware of the environment around him, and able to concentrate and focus on other learning.

Exposure to OT and developing awareness to self-regulate one’s body and the body-mind connection can help children – and adults – focus when distracted, and energize oneself when feeling depleted. For younger children, talking about one’s body as an “engine” that’s performing slowly, or “hot/too much energy” is a good visual to use. The following are some OT tactics that can help get your child (or you) out of a “hot zone” and into a calmer physical-mental state.

“On high” at home: too much energy and running all over the house? Some ways to ground yourself are animal walking, learning a few simple yoga postures to do, stopping and taking a few deep breaths.

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Autism and small victories

Lena Rivkin

“Phillip made that!” I proudly exclaimed. Then I instantly wondered who exactly I had become. A friend had come over with her 5-month-old baby. After we cooed over her baby’s latest accomplishments, I suddenly pointed to a neon pink, incredibly long legged creation with green ears, round black eyes and a glittering necktie, taped to my refrigerator door. I instantly worried aloud if I had just sounded too parental. My friend reassured me. “You’re not just Phillip’s sister. You’re his parent as well. So why not be proud of his accomplishments!” She’s right. I am proud. As an adult with severe autism, my brother Phillip doesn’t use words. He speaks with his art.

My brother and I were equally lucky in different ways to have an artist for a mother. Everything our mother did, she did with creativity and her own personal flair. Termed severely retarded at the age of three, my parents were told to expect nothing of Phillip, advised to put him in a mental hospital and to move on with their lives. Even though Phillip was born long before autism was considered common, my parents instinctively saw their son as more than just a dire diagnosis. So they did just the opposite.

My mother and father were very involved and dedicated parents. They fully immersed him in their fun and busy lives. They were proud of everything he accomplished. After I was born, my parents skillfully raised me to know that my older brother was special and he was my family.

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Developing long-term relationships between school and parents

Melissa Dubie

The process involved in establishing a student’s individualized education program (IEP) can nurture a climate of trust if certain steps are followed. Ideally, the annual case conference is a systematic process that ultimately leads to effective programming for students on the autism spectrum. In order for the case conference to run smoothly, certain preliminary steps should be taken that involves setting up the meeting, gaining input from all involved, and creating meeting cultures that promote collaboration.

Let’s start by setting up the annual case conference meeting. The annual case conference must be set up at a “mutually agreed upon time.” This means the school can suggest times. However, parents have the right to say when they can attend if the stated time does not work for them. Each party needs to be reasonable about their request. Attempt to meet during lunch hour, before school, or after school. Give sufficient notice for parents to make arrangements with their employers to get off of work. If a parent does not respond, it is essential to keep trying to meet with them for the conference. Offer to provide transportation to and from school for the parent. If there are extreme health or other circumstances, school staff may need to consider meeting parents at their home. If these attempts don’t work, then conduct the meeting over the phone. School districts must make three attempts to contact parents for a case conference meeting. Be sure these attempts are sensitive and responsive to events surrounding the family member’s life. Parents are an essential member of their son or daughter’s educational team. Also, be sure to let the parent know they can bring a friend, an advocate, or anyone else they feel comfortable with. Being outnumbered by the numerous professionals that typically attend these meetings can be overwhelming to some parents.

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Love the gift of who you are and love yourself

Kristi Sakai

My 8-year-old daughter, Kaede, is warm, friendly, caring, empathetic, has a wonderful sense of humor … and she has Asperger Syndrome. We’ve often heard, “She’s too social to have autism.” Her personality and delight in pleasing adults has sometimes overshadowed the black-and-white diagnostic criteria of autism spectrum disorder. Yet, even as she fluttered around like a little social butterfly she has faced challenges. For years she has had periods of excelling as she is highly focused on pleasing others, followed by an inability to manage in the school environment and deterioration of her behavior. She seems to be driven by high expectations of herself and the desire to please others – until she reaches her limit and hits overload. Yet throughout her struggles, Kaede continued to maintain her optimistic view, “Everyone is my friend,” she exclaimed cheerfully. She carried a seemingly unshakable sense of who she was, “I’m really smart!” and “I am great at drawing!” … until this year!

It has been painful to watch my daughter lose both her rose-colored glasses and her sense of self. A new Kaede emerged: wary, uncertain, anxious and depressed. And very, very sad. Initially it didn’t show up at school: she continued to do well academically and to generally be cooperative. Meanwhile at home there were daily morning meltdowns before school, which grew to include nightly meltdowns due to her anxiety over school the next day. She’d sleep fitfully, tossing and turning.

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The harmony of purpose

Lena Rivkin

My friends are great parents because they let their son skip school. Thursday, October 26th, 2012 was a regular old work or school day for most of Los Angeles, but for the students, teachers, aides, caregivers and families from LACOE Special Education Programs and LAUSD schools, it was Christmas, Hanukkah and everybody’s birthday all rolled into one huge party. And my friends Randy and Charisse make a point of having their 7-year old son, Tyler, volunteer with me.

Suzy Boyett, Program and Events Manager for the Music Center and her extraordinary staff tirelessly produce the Very Special Arts Festival. And it truly is the most exuberant day of the year – not just for the students, but also and especially for the artists and volunteers. The Music Center Education Division comes up with the Festival’s annual theme and each contributing artist develops a workshop around that theme.

This year’s theme was “Harmony”. Other contributing artists create workshops, which explore the concept of harmony with musical, theatrical, dance and even gardening and recycling activities. As a visual artist my job is to develop an art project for the children to construct.

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Ho-Ho-Hold the Expectations: Thoughts for a Great Holiday

Written by Maureen Bennie 

The Christmas holidays are a time of great excitement and anticipation. Holidays also mean changes in the schedule, visitors, crowds, line-ups, noise, and socializing. For children with ASD, the Christmas holidays can be a stressful and anxious time. Meeting family demands can be especially nerve-wracking, particularly if you want to break with time-honoured traditions that just don't work for a child with autism. Here are a few ideas for making the holidays happy.

1. Family Expectations - Be clear with other family members what will and won't work and make a compromise. For example, my mother wants us to spend most of the day on December 24th at her house, then go to an evening mass. To get a seat, you have to be there one hour before the mass starts. I know this will be too much for my two children on the spectrum so I've opted to just spend the afternoon at Grandma's, then go home for a quiet, family dinner on our own. We'll still see the family, just not for the same amount of time everyone else will.
   
2. Pick the Right Time for Activities - With everyone on Christmas break, most attractions will be busier. Call ahead and ask when the less busy times are. Matinees are better than evening shows. If eating out, get there by 5 pm or after 7 pm. A Sunday may be quieter than a Saturday; mornings are usually better at most places.
   
3. Maintain Routines - Try to stick with routines like bedtime, bathtime and meals. If that's impossible, try to keep one routine in place so that the child has something he can count on being the same. Kids like predicatability. If there is a change in routine, let your child know ahead of time on the schedule.

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How I took my autistic son off his meds

Shannon Des Roches Rosa

My 12-year-old autistic son Leo was on the black box anti-psychotic medication Risperdal for almost four years. As of this writing, he's been off it for almost four weeks. Will he be okay? I hope so, but I'm not sure. Not yet.

We'd finally arrived at the point where Risperdal's side effects outweighed its benefits. Leo was no longer the desperately agitated and distraught boy of four years ago who seemed to feel assaulted by the world and so needed to assault it right back... which was good. But after one of the periodic medical check-ins that should accompany any Risperdal use, we found out he was also on the verge of becoming an unhealthily overweight boy with dangerously elevated cholesterol levels. It was time to stop Risperdal and try something else.

The doctor who prescribes our boy's psychopharmaceuticals was sympathetic, both about the decision we'd need to make, and his own inability to give us guarantees about medications and autism -- because there aren't any. Autistic people as a population don't always react typically to medication, plus they can have very different reactions to the same medication. Leo's doctor couldn't tell us what was likely to happen if we changed Leo's meds; he could only tell us what he's seen in other patients.

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Autism and the battle against textures

Liz Becker

Sensation, whether visual, auditory or tactile, can be difficult for the autistic individual. Overcoming the onslaught, dealing with the sensations and figuring out how to interact in an environment filled with these uncomfortable and some times overwhelming stimuli are a daily ritual for many autistic children. Over the years my son has learned not only how to accept them, but has also figured out how to lessen the impact. Matt is 26 years old, (almost 27), and has spent 25 of those years navigating sensory overload. Over the years I have watched him learn and grow and just like every child, on the spectrum or not, he continues to learn how to interact in a complex world. I wonder, how much of his success can be directly related to his desire to interact with his environment?

This past month we carved pumpkins for Halloween. Now Matt has drawn on pumpkins before, has even tried carving before, but this year he did it all. From cutting the cap to cleaning out the goo to creating a design to carving, Matt did it all. While all of these things required interaction and creativity I am most impressed with his ability to think through a problem– more specifically, a sensory problem – and come up with a solution all by himself. Watching him I became convinced that his desire to succeed outweighed the obstacles his autism placed before him.

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He struggles, but he's my hero

Jenipher 

My 11 year old son, Emmett, is autistic. I love him the way he is. Let me repeat that - I love him the way he is. He struggles, but he's my hero. He is happy - most of the time (like any 11 year old boy)....he is affectionate, funny, and smart - in HIS own, special way. He has taught me and my husband so much about being loving, patient, and attentive parents to ALL of our four children.

Many parents of autistic children these days think that they can "cure" or "recover" their autistic child. I wouldn't change my son for the world. Wanting to "fix" him implies that he is ill, or sick, or broken, or lost....he is none of those -- he is who he is and if this is how GOD (or Fate) gave him to me, then it is not my place to attempt to change him so he can comply with societal norms.

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Death of the cool mom

Rachel McCumber

I remember a time when I was cool. At least, my son thought so. He liked going to the store with me. He thought I was funny. Being cool to my son was a nice balance to the struggles.

My son, Daniel is my first child. As a new mom, I wasn’t sure what to expect but it always seemed to me that connecting with Daniel and understanding him was unusually difficult. I began looking for answers and solutions when he was two but we didn’t get his diagnosis of Asperger’s Syndrome until he was eight. By then it was a relief.

Raising him has been a roller coaster. There are dark moments and great “highs” when we meet with success. Daniel is twelve now but because of how close he is developmentally to his younger brother, in the past, I have often feel like I had twins.

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