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12/12/2012

Asperger's Job Readiness Program

The next session of the JVS Toronto's Asperger’s Job Readiness Program is scheduled to start on Feb. 11, 2013.

The program was instrumental in helping Toronto's Malcolm Fairweather find a job he enjoys along with a new sense of self-esteem.

Funded through Service Canada and offered in collaboration with Kerry's Place Autism Services, the program helps young adults with Asperger's between the ages of 18 and 30 prepare for employment.

It includes eight weeks of intensive workshops with weekly one-on-one sessions followed by up to 14 weeks of work experience with job coaching.

For more information:

Download Job Readiness Program Flyer

Download JRP Application

 

 

12/03/2012

Two U.S. presidents and an autistic boy

For years, U.S. political journalist Ron Fournier and his wife Lori, thought their son was different, quirky and socially odd. But it wasn’t until the Fournier’s saw an episode of Parenthood that they realized their son was autistic. At the time, Tyler was 12.

Fournier, an editor at the National Journal, has written an emotional essay of what it’s like to be the father of a boy he was sometimes “embarrassed” of being embarrassed about. The article is about expectations, his perceived failures of being both a father and a son, and, how two U.S. presidents helped to show Fournier everything would be all right.

Fournier’s piece will make you like George W. Bush, if not momentarily, for his ability to instantly accept and connect with Tyler.

Bush gave Fournier a presidential directive to “love that boy.” Fournier listened.


 

 -- Tanya Talaga

11/30/2012

Teens with autism can thrive when they share their strengths

In a recent blog, we learned how Jacob Wilson, a Vaughan high school student who has autism, overcame elementary school bullies and blossomed in his teen years.

It turns out Wilson's experience is not so uncommon.

A recent American study shows that young people with autism spectrum disorders (ASD) can thrive as teenagers when they share their intelligence or special interest with peers. 

In Wilson's case, it was his voice, which he parlayed into a regular gig reading the school announcements and eventually used on stage in drama and musical productions. Suddenly he had friends.

The University of California, Santa Barbara (UCSB) study, published in the October issue of  the Journal of Positive Behavior Interventions, found that this ability to make friends shows that the area of the brain that controls social behaviour is not as damaged in teens with ASD as previously believed.

The study, discussed in the online research news site futurity.org quotes study author Robert Koegel describing how restricted interests among teens with ASD can dominate their lives and push people away.

“They're so highly focused on that interest, people think they're weird. But by involving themselves in an activity around the interest, they not only make friends but also become valued members of the group. Their specialized skill becomes a strength,” says Koegel, director of the Koegel Autism Center at UCSB and the study’s lead author.

It is an exciting finding -- proven through Wilson's experience -- that will no doubt give many teens with ASD, and their families, hope for the future.

 

 

 

11/21/2012

A safe place online for children with autism and other disabilities

For tech-savvy children, teens and young adults with autism spectrum disorders, the internet can be both a refuge and a peril.

It can be a source of fascinating information, escape and entertainment. But it can also lead to social isolation and cyber bullying. 

Ability Online, a monitored social network, allows young people with disabilities, chronic illnesses or other challenges to connect with friends, share stories and updates, and most of all feel included.

No other organization offers a program where the child can be in the safety of their home, using a computer or tablet, to interact with other children facing similar challenges, says Executive Director Michelle McClure.

“Instead of isolating a child with autism who understands they are different from the other kids, here they feel like they can finally fit in and be themselves,” she says.

The free, Toronto-based service which just celebrated its 20th anniversary, has helped more than 40,000 registered members since its inception, including 2,000 current active members. Most come from Canada, with about 23 per cent from the United States and about 2 per cent from the United Kingdom and Australia.

In addition to fostering friendships among children, the service partners with 200 health-care organizations that provide support to parents, teachers and professionals.

Each group of adults has their own special homepage where they can participate in forums, share resources and support each other, McClure says.

Meantime, homepages for children offer online mentoring, tutoring and job coaching.

A special friendship-builder portal for children with autism provides online role-playing, forums and problem-solving.

For autistic children, it’s about fitting in, getting support from others who face similar challenges, talking about what works and what doesn’t, and learning from each other while making friends on-line.

“It’s a wonderful opportunity for these children to practise real-life social situations in a safe and supportive environment,” McClure says. “It is a place where disability really disappears.”

 

11/17/2012

Q&A: Anne Gingras, blogger, teacher, mother, Aspie

Anne Gingras wears about as many hats as you can wear when it comes to autism. She is the mother of a 19-year-old son with high-functioning autism. She is a special education teacher who works with young autistic people at French Catholic school. She blogs about autism at myaspiefiles.com. And last year, she was diagnosed with Asperger's Syndrome herself. 

We asked her to pick her top issue in each of these spheres of life. What does she most want readers to know? Her answers have been edited and condensed.

As a mother: huge service gaps ignore older children

My son is 19 now, and when we got him diagnosed he was 4. The services seemed to be (geared) towards younger children. And as they grow older – high school years, college years, adult years – the services just disappear. That’s really, really scary, because there’s no support out there. Community living associations do give help, but they need to be within a certain IQ range. He’s so high-functioning, he doesn’t qualify for that. Yet he doesn’t fall anywhere anymore. So that’s really scary.

 

As a special-ed teacher: Seeming "normal" doesn't mean kids don't need help

I see my coworkesr struggling: sometimes they don’t see the autism because the kids look fine. They don’t understand that it’s something that’s ongoing, so you have to almost convince them . . . we need acceptance, not convincing. Teachers I find, especially in high school, they seem to think that (the kids are) in high school, so they don’t need the special help anymore and the ongoing support. So that’s really difficult. It’s almost like they see the kids manipulating the system, when they’re not.

 

As a blogger: being different is okay

I just started writing my own thoughts about how it is to be different, and how I see the world -- because we don’t see things exactly the same way, or in a typical way . . . Basically, (the goal is) acceptance. I’m different and you’re different. Let’s say if I go to your house, and I need to shut the lights because it’s too bright, doesn’t mean that I’m weird. Just like if you come to my house and the TV is too loud and you turn it down, it’s okay. It’s okay to talk about what makes us special and what makes us different. It’s not an excuse, it’s an explanation for our behaviours.

 

As an adult woman: that girls are being missed.

I was diagnosed last year, in 2011. I was 41...in the school board where I work, we’re starting to diagnose little girls even sooner. Because the word is getting out there. And I think that’s really important, because they come across as being shy and being studious and being extremely intelligent, and that’s okay. Meanwhile, they’re on the spectrum and we’re not addressing their other needs. I see them growing up, and I don’t want them facing the same thing that I did.

The Sunday Star features a story on mothers who are diagnosed with autism in middle age, and why girls are diagnosed less often than boys.

 

 

Familes struggle to help adult children and sibblings with autism spectrum disorders

In the early 1990s, when autism spectrum disorders were even less well-understood than today, most families with autistic children suffered in silence and isolation.
 
One Toronto woman says her brother never received help in school or elsewhere after he was diagnosed at age 13 with Pervasive Developmental Disorder - Not Otherwise Specified, (PDD-NOS), a condition on the autism spectrum.
Her brother is now an anxious and angry 33-year-old who until recently lived at home where he terrorized his parents by throwing dishes, upturning the family dinner table and attacking his older brother.
"Growing up, it was something we never spoke about," says the woman, who does not want to be identified to protect her brother's privacy. "He was never able to carry on a conversation and we all just put up with his erratic behaviour."
Last winter at a family gathering, the woman says her brother pushed her husband through the living room window and the family finally called police for help.
Her parents have rented an apartment for her brother. Police have issued a peace bond between the man and his family. But the woman is worried about her brother's future.
"He needs help," she says. "But we don't know how or where to get it."
Kerry's Place for Autism, which serves about 7,000 children and adults with autism spectrum disorder (ASD), has met the man several times. But the agency can't help him because he is not disabled enough to qualify for Developmental Services Ontario, a provincial agency that helps adults with autism and other developmental disorders.
He doesn't qualify for the federal Disability Tax Credit or the Registered Disability Savings Plan. And his behaviour makes it difficult for him to get help from justice and health-care systems.
Glenn Rampton, CEO of Kerry's Place, says this woman's brother is a classic case of someone with ASD falling through the cracks.

The health ministry doesn’t see him as a mental health problem, the ministry of community and social services says he is too intelligent to receive its services. But both need to take responsibility, Rampton notes.

If this man ends up in jail, he will cost taxpayers much more, he warns.

“There has got to be somebody who manages people who fall through the cracks,” he says.

The provincial Ombudsman can advocate for these people and raise red flags as it did in its annual report last year, but Rampton says the problem needs more than advocacy. It needs service.

In 2008, Autism Ontario released Forgotten, a report calling for a provincial strategy to deal with adults with Autism and Asperger's.

Four years later, families like this woman's -- and many others -- are still waiting.

 


 

What's in an autism awareness card?

Here's an information-packed autism awareness card from Dennis Debbaudt, the U.S. educator who works with police forces to improve their understanding of the disorder as well as their reponse in an emergency. There's more at ddpi@flash.net

Most cards have far less detail, but importantly, include the phone number of someone who knows the person with autism and can help in a crisis.

COMMUNICATION

The person you are interacting with:

May be non-verbal or have limited verbal skills

May not respond to your commands or questions

May repeat your words and phrases, your body language and emotional  reactions

May have difficulty expressing needs

BEHAVIOUR

May display tantrums or extreme distress for no apparent reason

May laugh, giggle or ignore your presence

May display lack of eye contact

May have no fear of real danger

May appear insensitive to pain

May exhibit self-stimulating behavior: hand flapping, body rocking or attachment to objects

IN CRIMINAL JUSTICE SITUATIONS

May not understand rights or warnings

May become anxious in new situations

May not understand consequences of their actions

If verbal, may produce false confessions or misleading statements

As with Alzheimer patients, persons with autism may wander. Persons with autism may be attracted to water sources, roadways, or peer into and enter dwellings.

TIPS FOR INTERACTIONS WITH PERSONS WITH AUTISM:

Display calming body language; give person extra personal space

Use simple language

Speak slowly, repeat and rephrase questions

Use concrete terms and ideas; avoid slang

Allow extra time for response

Give praise and encouragement

Exercise caution during restraint

Person may have seizure disorders and low muscle tone

Avoid positional asphyxia. Keep airway clear. Turn person on side often.

Given time and space, person may de-escalate their behavior

Seek advice from others on the scene who know the person with autism

If in custody, alert jail authorities. Consider initial isolation facility. Person would be at risk in general prison population.

REMEMBER: Each individual with autism is unique and may act or react differently.

PLEASE contact a professional  who is familiar with autism.

Copyright Debbaudt/Legacy Productions, 2005

 

 

11/16/2012

Autism alert cards in times of trouble

Many advocates suggest someone with autism carry a card that helps explain that the bearer may have difficulties communicating or responding to orders. These cards may be lifelines when people with autism get lost, encounter police, or even in everyday life where others may be puzzled or frightened by their mannerisms.

Here's a story relayed by British psychologist Richard Mills - he's Director of Research for the National Autistic Society - about how an autism awareness card helped a student with autism on the London subway. It reveals how people with autism don't often understand social boundaries and how their rigid behaviours can easily be misunderstood:

"He was a student who attended a college for people with autism. He was a very tall, athletic and handsome African teenager, and had very little verbal communication ability but was able to travel quite independently.

He had a preferred seat in a particular carriage on the Tube and whenever possible he would sit in it. One evening he was going home after a social event and because it was quite late there was only one other passenger, an older lady in the carriage, and because she was sitting next to his preferred seat, he sat next to her.

She suddenly got off at the next stop and complained to staff that she had felt threatened by him sitting next to her and thought she was going to be mugged.

He was apprehended by transport staff and police a couple of stations down the line. He did not initially respond to questions, but fortunately he had in his wallet with his travel pass an autism alert card and the police were able to put it all together. The police called his mum, explained what had happened and he was allowed to go home. If he hadn't had the card, it's easy to see how the situation could have gotten out of hand.

"It's part of this instinctive difficulty in understanding social context. You can teach behaviours, but without context, they don't really mean anything."

Mills adds:

"In London, on the tube, particularly at that time it was common for a lot of crime to be committed. Sitting next to someone causing them to feel threatened is an assault - in English law - touching them adds the charge of battery.  He was not charged and the lady accepted the explanation. Part of the difficulty in this case was the absence of any sign that the young man might be different or disabled.  

"I would make the point that people with autism are much more likely to be victims of crime and bullying. In fact, this particular young man had on another occasion been accosted near his home by a gang of youths who knew he had a disability and persuaded him to hand over his watch and some money."  

Older adults and autism

Here's an interesting note about autism in older adults in a study by British researchers. The Star's series turns its attention to older teens and adults starting Saturday and continuing until Monday.

The study, reported in the journal Geriatric Medicine,http://www.gerimed.co.uk/_documents/resources/1104.230.pdf suggests that brain maturation and adaptation continues well into adulthood, with a reduction in the level of disability for some.


"It is also suggested that some do in fact, 'grow out of' autism, in that they no longer meet diagnositic criteria for diagnosis. If this is so, and whether it is due to changes in the brain itself or the individual's successful adaptation to social and environmental conditions, are matters for conjecture.

"At present we do not know."

A 2009 study from the University of Utah showed improvement in communication skills and IQ and a reduction in repetitive behaviors and rigid interests in nearly 30 per cent of those studied.  Another review of adult functions, published in the Journal of the Canadian Academy of Child and Adolescent Psychiatry, reported that the worst outcomes in adults with autism were for those who also had an intellectual disability.

It's also distressing to read in the short, highly readable paper from the UK about the abandonment of many people with autism as they age. Studies from the 1980s and 1990s "revealed a desperate picture of social isolation, high unemployment and mental ill health among the more able population."

The paper concludes with questions. We've found in writing about this age group there are questions in abundance, but scant research and few answers.

 "Could this be a double whammy for people with autism? Already socially isolated and disadvantaged by their condition and responses to it, will they face additional problems from a system more attuned to the needs of the majority?"

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?

This response is from Catherine Lord, who is part of the American Psychiatric Association’s working group responsible for updating the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), a guide used by physicians around the world. The latest edition will include a new definition of autism.

Catherine Lord, director of the Center for Autism and the Developing Brain (a collaborative program between New York-Presbyterian Hospital, Weill Cornell Medical College and Columbia University, in partnership with the New York Center for Autism):

The number of children identified as having autism spectrum disorders has clearly been increasing for the last 30 years, with the steepest increases in the last 15 years. Some of this increase is accounted for by diagnostic substitution. That is, children who once received diagnoses of mild intellectual disability or receptive-expressive language disorder are now recognized as having autism spectrum disorder.

However, this shifting only accounts for a small proportion of the increase in numbers. Some of the increase is accounted for by increased awareness and access to services. We can see this in the U.S. Centers for Disease Control numbers, because parents who are not native English speakers, parents who have less education and families in regions with fewer services all have significantly fewer children with ASD in studies, something that seems very unlikely in reality.

We also know that from (the 1987) DSM III-R on, with broader references to difficulties in social reciprocity, as opposed to references to much more severe “lack of social awareness,” that the concept of autism has broadened. However, all of these factors do not necessarily add up to the very large numbers of children being identified now.

A recent study in the U.K., using similar standardized diagnostic methods to those in many other studies in Canada, the U.S. and Europe, found that 1 in 100 adults met diagnostic criteria for ASD, most of whom had never received an ASD diagnosis, though most of them were receiving some kind of psychiatric or social support, and many were not employed or living independently.

If 1 in 100 adults has ASD, then this would not suggest that the numbers of young children are not increasing as much as that, with careful searches, we are doing a better job of finding people with ASD — both children and adults (in that particular study, not necessarily in other circumstances).

Another research finding that suggests caution is that there is very large variation in how many children are identified with ASD in the U.S. in the CDC studies, and even in the baby sibling research projects, where methods are similar and researchers are all well-trained. My bias, as a clinician who works with families with family members with autism, is that most of the variation is accounted for by underestimates — that is, in some areas of the U.S. we are still missing many children, particularly children who are not in the famous “1 per cent” of affluence, with ASD or misdiagnosing them as having other disorders. However, I know that I am biased.

With adults and with the baby sibling studies, it is harder to know what is going on. Our clinic does see some self-referred adults hoping to get diagnoses of ASD that they can use to account for life problems such as marital problems or job losses or problems with the law, when ASD is not appropriate. In contrast, we also regularly see adults whom we do diagnose with ASD who have never received an autism diagnosis before but have clearly struggled with the difficulties associated with autism since early childhood, and just never had a good assessment. For children, my experience is that far fewer families seek diagnoses of ASD when they are not appropriate.

Putting this information together, I do not believe that we can rule out the possibility that the numbers of children with autism are increasing beyond diagnostic substitution and increased awareness, but we need to be very careful how we study these changes.

As a former Edmontonian and proud wife and mother of Canadians, I can proudly say that the Canadian health and social systems are much more uniformly accessible within provinces than these services in the U.S. and offer an opportunity to figure out what the true nature of these changes in numbers mean.

I avoid the use of the word “epidemic” because it has connotations of contagion and fear, which I do not think are helpful for families. But I think we need to understand what is happening.

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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