The UN passed the first ever World Autism Day April 2nd. CNN is planning an all-day coverage of the condition on that day. On Sunday night at 11, they are replaying their documentary “Autism is a World” following one young woman’s life.
Considering they are advertising this heavily, and even alerting more established blogs, they are probably going to air more than a Larry King interview!
Source: W-Five/CTV site
The story of Carly has been heavily covered in the media. To the point that several people have told me I should buy the PECS device they saw or read about — though they aren’t in a position to help me raise the $12,000 that it costs for the unit! They just like the “Star Trek”-ness of the device. LOL!
I’m hoping that W-Five will point out the heavy costs that a lot of people don’t understand come with caring for a child with autism. I also hope they will give a detailed account of wait times and lack of availability for ABA/IBI treatments. Because frankly I’ve been disappointed with the CNN “Jenny McCarthy says vaccines are bad” -style coverage. :/
Here’s what CTV teases about the show:
Coming Up
March 22Avis Favaro tells the remarkable story of Carly, a 13 year old girl with autism. She is unable to speak and like many children with autism, she lives locked in a world of her own. Or so everyone thought until Carly suddenly found a way to communicate and now has a powerful and moving story to tell.
Source: ComedyNetwork.ca
There’s no indication if this will air on this network at the allotted time.
Jon Stewart to host `Night of Too Many Stars’ autism benefit3/10/2008 11:14:00 AMAfter being surrounded by the dramatic heavyweight stars of the Oscars, Jon Stewart will play host again, this time to a bevy of comedians.
Stewart will host the second biannual “Night of Too Many Stars: An Overbooked Benefit for Autism Education'’ on April 13 at the Beacon Theater in New York City.
The night will feature standup routines, sketches and short films from comic talent, including Will Ferrell, Adam Sandler, Steve Carell, Tina Fey, Conan O’Brien, Stephen Colbert, Sarah Silverman and Amy Poehler.
It’s the second such benefit and was organized in part due to Robert Smigel, whose son, Daniel, is autistic. Smigel’s most famous character, Triumph the Insult Comic Dog, will also be attendance.
The night will raise money for schools and education programs for autistic children and adults. A portion of the proceeds will also go to the advocacy group Autism Speaks. The first “Night of Too Many Stars,'’ held in October 2006, raised more than $2.6 million.
Also appearing will be Matthew Broderick, Jonah Hill, Kevin James, Rosie O’Donnell and Susie Essman.
This video helps to explain the condition, and features an interview with a young man afflicted with the condition.
http://video.google.com/googleplayer.swf?docId=-3164386222378450506&hl=en-CA
CTV’s Avis Favaro interviews Carly’s parents and the various specialists involved in Carly’s care. Carly has apparently learned to type and can, in no uncertain terms, explain what she’s feeling. In case the article is removed; it is below:
Girl’s writings opening new window on autism
Updated Sun. Feb. 17 2008 10:12 PM ET
CTV.ca News Staff
A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it’s like to have her condition.
From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak.
Her father, Arthur Fleishmann, says many people who didn’t know her assumed she was intellectually challenged.
“Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would way mentally retarded, which means low IQ and low promise and low potential,” he says.
Arthur and Carly’s mother Tammy were advised to place her in an institution. Instead, they opted for an intensive therapy called ABA — Applied Behavioural Analysis, the kind of therapy now recommended for kids with autism but because of the expense and the need for specially trained therapists, isn’t available to all children.
While Carly made progress through the therapy, speech continued to elude her.
“We tried hard to get her to talk but it wasn’t in the cards for Carly,” says her speech pathologist Barbara Nash-Fenton.
Then, two years ago, Carly surprised everyone. Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words — help, hurt, head, teeth — but soon she was assembling sentences.
She typed then as she does now — slowly using only finger — and the words she wrote stunned all who knew her.
“All of a sudden these words started to pour out of her,” says Nash-Fenton. “And it was an exciting moment because we didn’t realize she had all these words.”
“It was one of those moments in my career that I’ll never forget.”
Writing reveals secrets of autism
As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself.
“It feels like my legs are on fire and a million ants are crawling up my arms,” Carly has written about the urge to hit herself.
“I want to be like Taryn,” she has written of her twin sister, who does not have autism.
With her single typing finger, Carly has been able to demonstrate her emotional intelligence and witty sense of humour to a family who says they were stunned by what she revealed.
“We realized that inside was an articulate, intelligent, emotive person that we had never met. She was 10 at the time, and we just met her for the first time at 10 or 11 years old,” says her father Arthur. “This was unbelievable because it opened up a whole new way of looking at her.”
Through her writings, Carly has joked about her “yucky” siblings, shown that she understands their jokes and revealed a curiosity about boys — even asking when can she go on a date.
“Inside, she is a perfectly normal 13-year-old girl. She has crushes, she likes music, she wants to be treated like every other 13-year-old,” says her father.
Carly also has expressed her frustration about her condition and about how the world misunderstands her.
“It is hard to be autistic because no one understands me,” she writes. “People look at me and assume I am dumb because I can’t talk, or I act differently than them… I think people get scared with things that look or seem different than them. It feels hard. It feels like being in a room with the stereo on full blast.”
Autism specialist Dr. Wendy Roberts has read some of Carly’s writing and watched her on video. She says Carly is certainly unique in her abilities and provides some fascinating insights into the condition of autism.
“I think the initial reaction is that it is incredibly remarkable,” she says. “It is amazing to think that somebody who has not been able to put her thoughts into words now has a mechanism to get some of her ideas across.”
Roberts says it’s unclear whether Carly’s unusual language abilities makes her a rare case or whether her new writing skills are the result of her intensive training.
She says it’s rare for someone with autism to have apraxia — the inability to speak despite an understanding of language — as well as such an obvious command of written words. Roberts says it may be that Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out.
“What she does is quite uncommon but there hasn’t been a really good look at kids with severe apraxia to see what could they be taught with intense teaching,” says Roberts. “And that really begs the question of are we giving children enough intensive intervention to see if we are missing a fairly small percentage of kids who have this ability. There may be children being missed because they have not had access to therapy.”
“From a broader perspective it puts pressure on us to develop interventions that will allow written language to develop… so that we can develop more effective interventions.”
The benefits of ABA therapy
Carly’s parents say they are so grateful that their daughter was able to discover this way to communicate because it has made them rethink autism and made them realize that they made the right decision to provide Carly with intensive therapy.
“If we had done what so many people told us to do years ago, we wouldn’t have the child we have today. We would have written her off,” says her father Arthur. “Then what would she be today?”
“We never would have seen she could write these things. Can you imagine? We would have never have gotten out of her how articulate she is how intelligent she is,” he says. “Now, she tells us stories, she teases her brother. She just does it in a different way, she does it with her computer.”
Carly’s writing has progressed so far in the last two years, she’s now starting to write a book. It’s a take-off on herself and she’s already come up with the title: “Elephant Princess.”
Her writing has also helped her therapists help her more effectively.
“We’ve actually learned a lot about Carly,” says her therapist Howard. “Since she has been able to type she has been telling us how it feels to be in her skin — like ants are crawling up her arm. For us, this is very important. It helps with how we treat Carly, even how doctors treat Carly.
“I think Carly has a lot to teach us.”
Carly has said she would like to tell the world about what it’s like to have autism, so that others can understand what it’s like.
“Autism is hard because you want to act one way but you can’t always do that,” she has written.
“It’s sad that sometimes people don’t know that sometimes I can’t stop myself and they get mad at me. If I could tell people one thing about autism it would me that I don’t want to be this way but I am. So don’t be mad. Be understanding.”
- Read some of Carly’s words.
From a report by CTV medical specialist Avis Favaro and producer Elizabeth St. Philip
Source: http://www.cbc.ca/news/background/autism/
I’m not sure why CBC revised their article, but it’s likely because they didn’t have proper permission to have the comparison between the provinces at the end of the article. It’s a very well written article. For comparison sake, here’s the original version:
ORIGINAL
In Depth
Autism
Making sense of a confusing world
February 11, 2008
CBC News
A child sits flapping his arms wildly in the air; another expresses his frustration by pushing aside a teacher’s aide, a third retreats into playing computer games instead of playing with friends.
All three are showing signs of autism, a common neurological disorder. Autism rates have been rising steadily — even dramatically — in Canada. An estimated 190,000 Canadian children have the disorder. The most recent epidemiological studies suggest that the rate of autism has increased from 40 cases per 100,000 to 60 cases.
Autism was first described in the early 1940s by two doctors who were working independently of each other. Leo Kanner and Hans Asperger identified a set of symptoms they found among the children they were studying. Both used the word autism — from the Greek word for self — to describe the children they treated who seemed enclosed in their own solitary worlds.
Kanner was a child psychologist at Johns Hopkins Hospital in Baltimore; Asperger — whose work was published a year after Kanner’s — was a pediatrician in Vienna.
Since Asperger, unlike Kanner, included people who had average to high IQs in his definition, the scientific community has reserved “Asperger syndrome” to describe prodigies and certain high functioning people with autistic disorder. Bill Gates, founder of Microsoft and the world’s richest man, is thought by many to have the characteristics of Asperger syndrome. He has often been seen rocking and tends to speak in monotones — both habits acknowledged to be symptoms of Asperger.
Seventy per cent of people with other forms of autistic disorders suffer from mild to severe mental retardation.
What is autism?
The term is used in two ways:
- To refer specifically to Autistic Disorder (classic autism).
- To refer to five Autism Spectrum Disorders described under the diagnostic category of Pervasive Developmental Disorders (PDD) that appear in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.
Autism Spectrum Disorder is a neurological condition that causes developmental disability. It affects the way the brain functions and results in difficulties with communication and social interaction. People with the disorder also exhibit unusual patterns of behaviour, activities and interests.
People with ASDs could share certain behavioural, social and communication characteristics, but they can vary widely in the effect it has on their day-to-day lives. Some people can function well, others are locked in a world of their own. At its most severe, people with autism can exhibit extremely repetitive and unusual behaviours like self-injury and aggression.
If untreated, the symptoms can be very persistent and difficult to change. But in its mildest forms, autism is more like a personality difference linked to difficulties in understanding social conventions.
What are some of the symptoms of ASDs?
There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:
- Shows no interest in other people.
- May be interested in people, but does not know how to talk, play with, or relate to them.
- Initiating and maintaining a conversation is usually difficult.
- Speech and language skills may begin to develop and then be lost, or they may develop very slowly, or they may never develop.
- Difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
- Repeated ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting self.
- Restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea, or activity.
- Sensory input may be scrambled and overwhelming.
As well, people with ASDs may have secondary problems such as:
- Neurological disorders including epilepsy.
- Gastro-intestinal problems.
- Fine and gross motor deficits.
- Anxiety and depression.
Children with ASDs develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking.
How are ASDs diagnosed?
There is no single test that will confirm that someone has an ASD. A diagnosis is based on the number and pattern of typical characteristics and on the observation of specific behaviours and disabilities.
Someone with a mild case could go undiagnosed for years and may only be detected when the person goes through a crisis that brings them in contact with professionals who are able to recognize the disorder.
What causes ASDs?
Nobody’s certain. It’s generally accepted that autism is a neurological disorder. Research is focusing on genetics, differences in brain function, environmental factors, viral infections and immune responses and deficiencies.
In 2001, a Wired magazine article coined the term “Geek Syndrome” after researchers in California (particularly Silicon Valley) noticed a three-fold surge over 10 years in the number of reported cases of autism.
Researchers have found children with autistic disorders are more common among the offspring of parents in particular careers. In the mid-1990s, clinical psychologist Simon Baron-Cohen compared the professional backgrounds of parents and grandparents of almost 1,000 children with autism to groups of parents of children with Tourette syndrome, Down syndrome and other language delays, and to a control group of parents chosen randomly. His findings showed that the fathers and grandfathers of autistic children were twice as likely to be engineers as the parents of children who were not autistic.
A study published in the journal Nature Genetics on Feb. 18, 2007, pinpointed a new region of DNA thought to cause at least some cases of autism in children. The work involved abnormalities in chromosomes, gene codes and proteins. Between seven and 12 per cent of the families showed individuals sharing possibly detrimental chromosome abnormalities. A linkage analysis that searched for regions of the genome that might be shared by individuals with autism spectrum disorder turned up a region on chromosome 11 that was not previously linked to the risk of developing autism.
How is autism treated?
Some people with mild forms of autism may never need treatment. They can function well and may even excel. However, those with severe forms of the disorder are unable to function and may benefit from active therapy.
There are several ways people with autism are treated and there is plenty of debate over what kinds of treatments offer the most success. Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) are designed to actively engage children with communication, socialization, learning and behavioural problems.
ABA can be extremely expensive as it involves one-on-one teaching for up to 40 hours per week. Costs range from $30,000 to $80,000 a year, according to Autism Society Canada. IBI is also an intensive program that can involve either one-on-one therapy or sessions with small groups.
Other types of therapy can combine elements of physiotherapy, counselling, development of motor and language skills, diet and medication.
Provincial medical plans offer varying levels of coverage for autism therapy. Some will also cover all or part of the cost of intensive ABA and IBI programs.
- Alberta pays up to $60,000 a year per child up to age 18 for ABA/IBA programs.
- Ontario covers ABA/IBI programs for qualifying children under the age of six — older children are also eligible if an assessment determines they need more treatment.
- British Columbia pays up to $20,000 annually for treatment for children up to age six. It pays $6,000 annually for treatment of children six years of age and older.
- Nova Scotia pays for an Early Intensive Behaviour Intervention Program. Direct EIBI is provided over the first six months for 15 hours a week, and is gradually reduced over the following six months (10 hours per week for three months and then five to six hours a week for the remaining three months). The number of children selected for the program depends on the resources available through local District Health Authorities.
- P.E.I. covers IBI programs for up to $200 per week.
- In New Brunswick, the government will pay for intervention services for a child diagnosed with Autism Spectrum Disorder until the beginning of the school year in the year they turn five.
- Manitoba pays up to $6,000 a year for preschoolers for up to 36 hours of ABA treatment a week, with five hours of that treatment provided by the family.
- Newfoundland and Labrador will pay up to $40,000 a year per child under the age of six for 30 hours a week of ABA/IBI treatment for two years.
- Saskatchewan offers up to 10 hours of therapy under its Autism Early Childhood Therapy Program. In 2006, six children were covered.
- Quebec’s Autism Action Plan offers 20 hours a week of ABA/IBI therapy for children between the ages of two and five.
- The Yukon government pays for ABA/IBI treatment for children up to the age of 19, with no yearly maximum.
- The Northwest Territories pays for ABA/IBI treatment for pre-school and school-aged children.
- Nunavut has no specific program for children with autism.
