Not long ago I posted a video of a lecture by Temple Grandin. Temple is autistic, a designer of livestock handling facilities and a Professor of Animal Science at Colorado State University. She is an icon in the Autistic Community. Her life has been a beacon and an inspirational story and recently her story was told in a biopic produced by HBO. She is the author of several books on autism and the autistic spectrum.
Yesterday I came across this amazing one-on-one interview with Temple. The video is a re-broadcast of an hour long intimate discussion with Temple about her life, her work and her journey with autism. If you are at all interested in the area of ASD you will want to watch this!
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As today is World Autism Awareness Day, I thought I’d highlight A new book by Australian author and mum Sally Thibault, whose son David, now 24 and studying at University, has Asperger’s Syndrome. Below is an interview with Sally and the story of “David’s Gift”
Credit : davidsgift.com.au: A new book called David’s Gift by Australian author Sally Thibault is a real-life story about her long struggle to cope with son David’s Asperger’s Syndrome – an autistic spectrum disorder. The book was released in mid March 2010 to help other parents facing challenging behaviours with children.
The message of the book is for everyone – that it’s not what happens to you in life that’s important, but how you handle it that matters.
Sally was a pioneering parent dealing with autistic spectrum disorder when it was unknown and first being diagnosed in Australia about 12 years ago. Now this complex neurological disorder is the most common developmental disorder in Australia. One in every 166 children in Australia has autism and that number has increased to one in every 91 children in the USA. Three out of every four are boys.Interview with Sally Thibault ABC Queensland 1st April 2010 Download
Already being touted as a must read for all parents, teachers and health care professionals, David’s Gift helps others understand the pain and emotions parents deal with as they navigate the challenges of having a child with ASD.
Thibault’s story is inspirational and offers hope to people from all walks of life, especially those with disabilities. The book reveals useful information about Asperger’s Syndrome and autistic spectrum disorder (ASD), and gives parents real, tangible tools to assist them to come to terms with the diagnosis and create strategies to ensure their child grows to be a strong, self-actualised and confident young adult.
“When Asperger’s Syndrome first came into our lives it presented us with a challenge that, at the time, seemed sad, unfair and overwhelming. It is only now I can see that it was in fact an incredible gift,” said Mrs Thibault.
“As parents, we had to become the people we wanted David to be. What we learned about ourselves and who we became as people was David’s gift to us.”
“The book transcends the issue of autism and can be transferred to anyone’s life situation. The story has the potential to transform how people view the challenges they face, by helping readers see how those challenges are a gift offering them opportunity to grow and have a better life.”
Sally Thibault is a ‘wise mother’ of three children aged 24, 22 and 16, who has lived with autistic spectrum disorder for 24 years. She hopes her honest account of parenting a child with Asperger’s Syndrome will help other parents learn through her experiences.
When her eldest son David was a toddler, Sally knew he was different from other children. After searching for answers for many years, it wasn’t until David was 12 years old that he was finally diagnosed with Asperger’s Syndrome, an autistic spectrum disorder, in 1997.
“Back then, there wasn’t nearly as much information about Asperger’s as there is today, but judgements still haven’t changed in 12 years,” said Mrs Thibault. “One of the greatest challenges for children with ASD and their families is coping with a world that doesn’t accept difference very well.
As Barack Obama said: “My advice is to cultivate a sense of empathy – to put yourself in other people’s shoes – to see the world from their eyes. Empathy is a quality of character that can change the world.”
Asperger’s Syndrome is the mildest and highest function end of the autistic spectrum. People with Asperger’s find it difficult to understand social skills, often misunderstand the use of language and can be considered ‘obsessive’, focussing on one particular area of interest. People diagnosed with Asperger’s are generally intelligent, intense and self-focussed individuals who usually find success in a career that requires enormous amounts of attention to detail.
Steven Spielberg was diagnosed with Asperger’s as an adult. Today, David is following a similar career path and studying to be a digital video editor, which is perfect for his personality type.
Bill Gates is suspected to have Asperger’s Syndrome, along with Albert Einstein, Isaac Newton, Benjamin Franklin and Ludwig van Beethoven. David’s Gift has parallel themes to the award-winning book and film, The Horse Boy – a true story about a father’s quest to heal his autistic son by traveling with horses through Mongolia.
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Jodi Picoult is the author of a number of topical novels including “My Sister’s Keeper” and the recently released “House Rules“, a murder-mystery in which the main character is Jacob, a young man with Aperger’s Syndrome. I have just finished reading this novel and thoroughly enjoyed it. Picoult’s understanding of ASD is extensive and well researched, although Jacob’s character probably represents a conglomerate of austistic features in one character. I wondered where she might have drawn her inspiration for the book’s protagonist. As the podcast below reveals, she has some personal experience. Thought it was interesting. Have a watch
Vodpod videos no longer available.
Here’s a review of the book if you’re interested:
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- Picoult keys on a teen with Asperger’s (boston.com)
- Jodi Picoult’s ‘House Rules’: a novel about a family ruled by Asperger’s syndrome (seattletimes.nwsource.com)
I came across this fascinating lecture by Temple Grandin. Enjoy!
Vodpod videos no longer available.
Recently, the American Psychiatric Association released some preliminary draft changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) that may affect those diagnosed on the autism spectrum. There are several significant changes proposed that are now posted for public view, including: Asperger’s Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) would both be subsumed into the Autistic Disorder category, meaning that they would no longer be considered a separate diagnosis from autism, and the inclusion of potential co-morbidities with ADHD and other medical conditions.
The Autism Society is currently investigating the implications this change could have for the service and support systems currently in place for those with autism spectrum disorders. We will also be holding a town hall meeting at the Autism Society’s National Conference on Autism Spectrum Disorders in Dallas July –, 2010 (learn more about the conference or register at www.autism-society.org/conference). You can also give your feedback on the changes at the Web site www.DSM5.org – look for the diagnoses on the autism spectrum under “Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence.”
These changes are not yet official – they are proposed for the update to the manual, which is expected to be published in May 2013. Whatever changes do go into effect surrounding autism spectrum disorders, the Autism Society will continue to work as we have always done to improve the lives of people across the entire spectrum of autism.
I love using technology to engage and reach people in therapy. For me, it started with the relaxation cassette tape! I frequently use the internet,email, PowerPoint narratives and mp3’s and even Twitter and this Blog with clients. A Minneapolis center is experimenting with Ipods as an intervention tool with ASD youth. The wonderful book “Getting IT” is a must for anyone interested in using technology with children and youth in the areas of mental heath and disability. I thoroughly recommend it.
This story from Reuters
Sue Pederson knows that the teenage boys in her treatment program have trouble making conversation. They may not know what to talk about; or once they get started, when to shut up.
That’s one of the striking features of people with Asperger’s syndrome: they struggle with the social skills that come so naturally to others.
But about a year ago, Pederson, a psychologist, and her colleagues at the Fraser Child & Family Center in Minneapolis found a new way to reach these students — right through their headphones.
They’re using iPods, which play music and videos, to teach them how to fit in.
It may have started out as a form of entertainment, but Pederson says this kind of technology is turning into an unexpected boon for children and teenagers with special needs. The devices, it turns out, can be crammed with the kind of information they need to get through the day. While it’s still experimental, she said, “I think it’s going to spread like wildfire.”
With Asperger’s, a form of autism, people lack the inner voice that tells them what is, or is not, appropriate behavior. At Fraser, Pederson’s staff came up with the idea of programming iPods to act as an electronic substitute for that missing voice.
In this case, the staff helped students create a series of short videos and slide shows on how to behave in different social settings. Some are barely 30 seconds long: How to carry on a conversation (“Let the other person talk AND change the topic…”); how to respect other people’s boundaries, and think before they speak (“Use your filter!”)
In the world of special education, these scripts are known as “social stories,” used to teach basic social skills. “It’s a mental checklist for things to think about when you’re interacting with other people,” explained Mandy Henderson, who works with Fraser’s Asperger’s program.
As part of the Fraser project, the students can transfer the videos onto their iPods, and replay them over and over, to drive the lessons home.
Jack O’Riley, of Eagan, said it’s just what his 15-year-old son P.J. needed. “This really hit the mark,” he said. Like many kids with Asperger’s, P.J. is baffled by the normal rhythms of social interaction: in conversation, he may blurt out too much information, or say nothing at all, his father says.
At the same time, P.J. is easily distracted and has a hard time staying on task, another common trait of Asperger’s. For years, O’Riley posted laminated signs around the house to remind his son how to get through the day — take a shower, brush his teeth, get ready for school.
Now, with the videos developed at Fraser, “we can plug this stuff into his little ‘extended memory,'” O’Riley said. P.J. is building a library of videos on his iPhone, so they’ll be at his fingertips. “He can pull up a topic on his ‘to do list’ and find everything he needs to know,” his father said.
Sixteen-year-old Myles Lund of Lakeville, another student in the Fraser program, said he’s learned to use the iPod to help control his emotions by playing his favorite music. “It helps take my mind off of it,” he said. At the same time, Myles, who says he rarely initiates a conversation, agrees the videos can help in social situations. “I just pull out my iPod and go through a list of things to talk about.”
The staffers at Fraser came up with the idea after they noticed how students with Asperger’s would use iPods as a calming device, to block out noise or other distractions. “We just started thinking how else can we use this technology,” said Pederson. They got a $7,500 private grant to buy the iPods and other equipment, and started experimenting.
Jim Ball, an adviser to the Autism Society of America, said similar projects are popping up around the country. Some people are designing adaptations for smart phones, Palm Pilots and other devices to fill the same need, he said.
“This is just another way of prompting kids when they’re in situations when they don’t know what to do,” said Ball, who works with autistic children in New Jersey. “The technology gives them the ability to be independent.”
Ball noted the devices could work especially well with Asperger’s kids, because they’re often far more comfortable with electronic gadgets than they are with people. “It’s a machine; they don’t have to react to it, they don’t have to understand it,” Ball said. “They just need to know how to work it. And they do.”
Another advantage, especially for teenagers, is that they won’t stand out using this kind of device, noted Pederson. “If you walk into a family reunion and you’ve got a teenager with an iPod, nobody bats an eye,” she said.
Barbara Luskin, a psychologist with the Autism Society of Minnesota, agrees. “Adolescents with Asperger’s, like all adolescents, don’t want to look different,” she said. If the device just blends in with everyone else’s, she said, “you’re much more likely to use it.”
So far, there appear to be few commercial products aimed at this market, but that may be changing. The Conover Co., a special-education software company in Appleton, Wis., recently adapted its “Functional Skills System” for the iPod Touch. But the package, which sells for $3,500, is mainly marketed to schools and other organizations.
Fraser, meanwhile, is hoping to get another grant to expand its iPod program.
Ball, of the Autism Society, predicts this is just the beginning. “I think that technology is limitless in its potential for working with kids,” he said.
Music affects all of us, and we can attest to it’s appeal to our emotions. Now researchers have developed a program designed to help children with ASD better understand emotions, and learn to recognize emotions in other people.
The children use a method of music education known as the Orff-Schulwerk (schulwerk is German for schooling) approach, which was developed by 20th-century German composer Carl Orff. This approach to music learning uses movement and is based on things that kids intuitively like to do, such as sing, chant rhymes, clap, dance and keep a beat or play a rhythm on anything near at hand.
The 12-week program uses elements from the Orff method — including games, instruments and teamwork — and combines them with musical games. The idea is to pair emotional musical excerpts with matching displays of social emotion (happy with happy, sad with sad, etc.) in a social, interactive setting.
Istvan Molnar-Szakacs, a researcher at the UCLA Tennenbaum Center for the Biology of Creativity and member of the of the Help Group–UCLA Autism Research Alliance, stated, “The purpose of this work is to provide a means for awakening the potential in every child for being ‘musical’ — that is, to be able to understand and use music and movement as forms of expression and, through that, to develop a recognition and understanding of emotions.”
Molnar-Szakacs also said that participating in musical activities has the potential to scaffold and enhance all other learning and development, from timing and language to social skills. “Beyond these more concrete intellectual benefits, the extraordinary power of music to trigger memories and emotions and join us together as an emotional, empathic and compassionate humanity are invaluable”
The goal of the research is to evaluate the effect of the music education program on outcomes in social communication and emotional functioning, as well as the children’s musical development.
I am constantly delighted and enthralled by the children, young people and adults with ASD with whom I have the opportunity to work. There is a frankness and depth in these conversations that blows my socks off just about every time we get together.
Here are some of the ASD resources that I use and recommend to my clients and patients as well as my colleagues.
This is not an exhaustive list by any means, but rather some of those I have found most useful or been described as most helpful. Please have a look and see if you think they may be of use to you or someone you know. There are others listed in my “Highly Recommended Books and Resources” Link to the right of this page.
and there are so many others! I’m just realising that this is an entire post topic in itself. Stay tuned. Any others you like” Any questions? Leave a comment!