Bits & Pieces 

August '09

G'day everyone. Now I've begun to turn the headings intolinks so you can go straight to the source and see related articles, pics & video.

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Aug 20

Australian Associated Press

"We need to know the extent of autism in Australia so we can properly support people with ASD."  - Bill Shorten                                                           

A national register will be created to track the rising incidence of Autism Spectrum Disorders (ASD) in Australia, the federal government has announced.                                                                                                  

Parliamentary Secretary for Disabilities and Children's Services Bill Shorten told a regional autism conference in Sydney that a register would help improve government support services.                                                        

"The autism community has been advocating for a comprehensive approach to national data collection for many years," Mr Shorten said on Thursday at the Asia Pacific Autism Conference 2009.                                                      

"We need to know the extent of autism in Australia so we can properly support people with ASD."                                                                         

Establishing a register was a key recommendation of a 2007 report commissioned by The Australian Advisory Board on Autism Spectrum Disorders (AABASD).                                                                                        

The AABASD, a WA-based register and other stakeholders will lodge a report detailing a proposed model for the register with Mr Shorten's department by September 30.                                                                          

"The government will consider the range of options in the report, before making progress to develop the register," Mr Shorten said.                             

The government last year announced a $190 million Helping Children with Autism Package.                                                                                                 

The brain development disorder affects one in 160 Australians. The rate of diagnosis is increasing, partly due to increased understanding.

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How To Guide for Teachers of Autistic Students

Karen Griffin Roberts' education manual was named GMU's Most Creative BIS Project.

By Justin Fanizzi

(Burke Connection)

Wednesday, August 19, 2009

When Karen Griffin Roberts set out to return to school to get her bachelor's degree, she simply wanted to jump the gun and meet future federal requirements for preschool teachers. Instead, she became the creator of an award-winning educational manual and provided hope for millions of children with autism at the same time.

Griffin Roberts, a Burke resident, was selected as the recipient of George Mason University's 2009 Most Creative Bachelor of Individualized Study (BIS) Project Award for her senior project, which outlined education strategies for children with autism.

"I was shocked," Griffin Roberts said, describing her reaction to winning the award. "So many of my fellow BIS students had phenomenal projects and studies. I'm still not sure why mine was singled out among them, but I am truly honored."

According to BIS Director Dr. Jeannie Brown Leonard, the BIS program recognizes students who produced exemplary projects in their senior capstone course at the end of every spring semester. The students are nominated for the awards by their individual BIS faculty mentors and, after a thorough selection process, were named and recognized after the undergraduate convocation ceremony.

Griffin Roberts was nominated by her mentor, Dr. Monimalika Day for her project, an educational guide entitled "Modifying the Preschool Classroom to Include Children with Autism: A Manual for General Education Preschool Teachers." The manual explains the developmental deficiencies that children with autism have and provides a researched strategy on how to incorporate them smoothly into a typical classroom.

Griffin Roberts, a teacher for 18 years, with the last 10 spent teaching preschool at Burke United Methodist Preschool, drew the inspiration for the manual from her own person experience. Her son Kevin, 21, was diagnosed with Asperger Syndrome, an autism spectrum disorder, and as a teacher, she developed an interest in finding a way to make children with autism a part of a typical classroom. So, when she decided to return to school, she registered in the individualized study program so she could pursue this interest.

"During years of teaching and raising my son with autism, I learned a lot about special education," Griffin Roberts said. "I thought my knowledge of autism with a preschool teaching background would be a unique perspective on teaching young children in special education."

As a requirement for graduation from the program, Griffin Roberts had to complete a senior project, and the decision to create the manual was an easy one. Griffin Roberts said that she had included a child with high functioning autism into her general education preschool class and that he attained success in a mainstream kindergarten. In addition, she did an internship that summer with Johns Hopkins School of Medicine's Center for Autism in Baltimore, where she was able to observe autism classrooms, attend autism professional development classes and more. Based on those two experiences, she knew she had the research she needed to create an effective manual for teachers.

So far, the manual has been well-received, garnering positive reviews from many places outside of the George Mason community. Griffin Roberts said that she has received positive feedback from families that have children with autism, and said that her strategies have already been pitched to local preschools.

THE EDUCATION community has also responded well to the manual, with the Parent Educational Advocacy Educational Training Center being a prominent supporter of Griffin Roberts' work. The center, a non profit dedicated to improving educational opportunities for children with disabilities, has given the study glowing reviews and has posted the manual on its Web site.

"She's done a fabulous job," said Charlene Takemoto, executive director of the training center. "The manual not only has some solid ideas, but it also has a strong research foundation. There may be other interest in publishing it."

Currently, Griffin Roberts is beginning her second year in the masters of early childhood special education program at Mason on a full scholarship awarded after she completed her bachelor's degree. Since the scholarship is through a federal grant, she owes the federal government four years of special education teaching in some capacity.

Eventually, she hopes to be working in a preschool autism classroom or a classroom for young children with varied disabilities. In the meantime, however, she can take pride in the fact that she has helped people, and that others recognize it.

"Karen has demonstrated excellent leadership qualities by working on a cutting edge issue in the field of special education and early childhood education," said Day, in his nomination report. "Her work has definitely impacted teachers in this region and can potentially affect teachers across the nation."

By HOWARD WEISS-TISMAN                                                             (Brattleboro Reformer)

BRATTLEBORO -- An Australian artist has given a new voice to the students at a school for autistic children.

Garry Jones recently completed his musical installation, "Wind Song Dreaming," on the campus of INSPIRE for Autism, a private school for autistic children that opened last year.

"Music is a pure form of communication," Jones said, as the wind blew up through the valley and created haunting tones from the sculpture. "For people with disabilities, this gives them a way to make music and experience music."

Jones, who moved to Brattleboro recently, has worked in the past with people with disabilities.

He contacted administrators at INSPIRE earlier this year with an idea to create a musical sculpture that the students could help put together.

The artwork now stands sentry in front of the school.

At the top of each pole, a plastic tube with a slit allows the wind to pass through and make deep tones.

Within each tube, an organ pipe is connected to a bellows positioned below a rubber pad which allows the students to jump up and down, sending air through the pipe and creating a different tone.

When the wind is blowing hard, and two or three students are working the pipes, the sculpture lets out chords and notes that sound at once disjointed while at the same time soothing.

"This is a way to communicate. Anyone can do this," Jones said. "I am trying to create a different way to experience music."

INSPIRE co-director Carol Ortlip said Jones called in the spring looking for a school to work with and she said the school was excited from the start.

The school built its summer art program around the project, with the summer students painting the tubes and creating a totem on top of each tube that reflects the personality of the student who worked on that pole.

The students also helped put together the sculpture.

When Jones first walked around the campus, he did not know exactly what the final piece would be, but they settled on a high hillside in front of the new school and decided to make use of the stiff winds in that area.

"This gives us a sense of permanence," Ortlip said about the steel poles that now stand in front of the school.

The school opened last year to serve student with autism and had three students in its first year.

This September, 11 students from Vermont, Massachusetts and New Hampshire are expected to enroll in the special program.

"For these kids who can't sing or play instruments, this is a way for them to make music," Ortlip said. "For these kids, who look at the world in a different way, I think this is a great way for them to express themselves."

Jones is a musician and he first worked with people with disabilities in 1994.

Each sculpture that he develops is a little bit different, but they all use physical movement and stay away from any electronics.

"I have no interest in doing the same thing over again. Each piece is unique," Jones said. "These kids have a different way of describing things and a different way of looking at reality. This gives them a different way to make music."

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                                                                                                                                                      BY CASSANDRA SPRATLING
FREE PRESS STAFF WRITER

There was a time when Claudreen Jackson wasn't sure she loved her son Pervis Jr.

He was driving her crazy. From the time he was about 2 years old, P.J., as they called him, screamed uncontrollably and ran around the house. He tore the drapes from the windows. He ran on top of furniture. He couldn't talk like most kids his age. He wouldn't let people hug him or hold him.

P.J., now 34, is autistic. And his behavior depressed Jackson, sometimes to the point of her spending days in bed, not bothering to wash up or comb her hair.

One day she was sure that she was on the verge of a nervous breakdown. So she figured she'd better clean the house. She didn't want whoever came in to take her away to think she was a horrible housekeeper.

She also figured she should buy groceries and cook, so her three older children and P.J. would have something to eat while she was away. And she also figured she should do the laundry so they'd have clean clothes.

Jackson was so exhausted after getting ready for her breakdown, she slept peacefully and woke up refreshed the next day.

God had answered her prayers, sort of.

"He didn't cure Pervis, but he cured me," says Jackson, now 70.

"I had to ask myself, are children worth any less because they have a disability?"

Jackson grew into a loving caregiver, an ardent advocate for disabled children.

She took classes at what is now the University of Detroit Mercy simply because she wanted to be polished when speaking on behalf of disabled people.

Those classes led her to an education degree. At 50, she became a special education teacher and retired 14 years later.

Jackson tells her story in a book about her life raising Pervis Jr. and living as the wife and now widow of Pervis Jackson of the multi-Grammy winning R&B group, the Spinners.

"Inspired by Autism: A Spoonful of Comfort for Parents of Children with Disabilities," (Zoe Life Publishing, $14.95), will be available Friday at a fund-raiser at Seldom Blues in downtown Detroit. Proceeds benefit the Pervis Jr. Autism Foundation.

Jackson says her late husband inspired her to write the book. He often encouraged her writing, and his dying wish was that she do something to help disabled children and their parents. In addition to her life's story, the book contains poems by her and her late husband.

Jackson's ultimate goal is to raise money to help parents struggling with raising disabled children. The funds will help pay for respite, camp or other services.

"Those of us with money can afford to take a trip or have somebody come and sit with our children, but lower-income parents don't have that," she says.

Jackson knows what stress can do to a marriage. Her son's autism and her husband's singing career -- which kept him away from home and her alone a lot -- hurt their marriage. They were separated for several years, but never divorced, and reunited after years of separation.

These days P.J. is much calmer than he was as a child. Even though he can't work, he can care for his basic needs, including cooking and cleaning for himself.

P.J. also enjoys painting, and some of his colorful artwork adorns the cover of his mother's book.

"I was struggling so hard to make him into what I wanted," Jackson says. "I had to realize that all I can do is help develop whatever potential he has. And really that's all any parent can do with any child."

Jackson realizes that many parents cling to hope for a cure. While she doesn't discourage that, she wants parents to know that even if their child isn't cured, autism is survivable.

"Even if you can't cure them, you can still love them," she says.

Wednesday, August 19, 2009

(The Republican)

Proposed legislation at the Statehouse would require insurance providers to offer coverage for the treatment of autism.

The organization of Advocates for Autism proposed an insurance bill on Jan. 22 supporting individuals with autism.

State Rep. Barbara L'Italien, of Andover, and state Sen. Fredrick E. Berry, of Beverly, have introduced House Bill 3809, and it is also co-sponsored by 110 legislators. Currently eight states have passed similar bills including Maine, New Hampshire and Connecticut.

The bill, An Act Relative to Insurance Coverage for Autism, would require insurance providers to provide total coverage in the diagnosis and treatment of autism. The bill would require insurance companies to provide coverage for diagnostic testing, applied behavioral analysis, and behavioral therapy.

It would also require coverage for occupational therapy, physical therapy and speech therapy. The act provides complete coverage as long as the diagnosis and treatment is provided or prescribed by a licensed physician or licensed psychologist, who will determine if the treatment is medically necessary.

If habilitative or rehabilitive care is needed it should be analyzed and supervised by a certified behavior analyst. Only a licensed professional can determine if other treatments such as pharmacy care, psychiatric care, psychological or therapy are needed.

The bill does not have an age limit. It is currently going through the legislative process and if passed it would take effect in January 2010.

Today one in every 150 children is affected by the autism spectrum disorder.

Every day we are learning more about this disorder along with all the different types of treatments available. However, one common problem is that many of these treatments are not covered by insurance, which means that many families have to pay out of their own pocket.

Due to the fact that many of these treatments can cost several thousands dollars, many families experience hardships, especially in today's economy.

Health care should not only be affordable but every one should have access to it especially when our health and well being is a top priority. Carrie Barrepski, a native of Livonia, Mich., lives in Western Massachusetts. You can learn more about Carrie at her Web site, www.carrie writes.netShe can be reached at cbarrepski@ carriewrites.net The bill, An Act Relative to Insurance Coverage for Autism, would require insurance providers to provide total coverage in the diagnosis and treatment of autism. The bill would require insurance companies to provide coverage for diagnostic testing, applied behavioral analysis, and behavioral therapy.

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By Betsey Bruce                                                                                              August 20, 2009

(Click heading link to article with video)

WATERLOO, IL ( KTVI - FOX2Now.com )

An autistic boy will be allowed to take his new service dog to school in Columbia, IL. Monroe County Circuit Judge Dennis Doyle issued a preliminary injunction ordering the Columbia School District to permit the highly trained dog to accompany Carter Kalbfleisch to his special needs class.

The judge cited an Illinois state law that permits children with disabilities to have service animals in school if the animals help them complete beneficial tasks . The school district attorney had argued the dog had nothing to do with the child's educational needs. Christi Flaherty insisted since the dog was not part of the child's IEP or individual education plan, the animal should not be allowed.

The five year old boy's mother, Melissa Kalbfleisch testified that after just one month of working with the dog, her son could calm down and focus on tasks without throwing disruptive tantrums. For the first time, she and her husband were able to take Carter on family excursions and shopping trips. Kalbfleisch said she and her husband are trained to handle the dog in public. She plans to come to school with her child to be sure there are no problems.

Judge Doyle said that in addition to the state law he was impressed by the fact two doctors had prescribed the service dog as an aide to the child.

Shannon Crook, who identified herself as a new resident of the school district, testified her child has a rare lung disease and must be hospitalized when he is exposed to dogs or cats. The judge ordered both sides back to court on Monday to work out the logistics of how to safely introduce the dog, Corbin, to the school setting.

No date has been set for a court hearing on a permanent injunction in this case. One of the attorneys for the Kalbfleisch family said they remain open to "working with the school district to try to accomplish our mutual goals.

School district attorney Flaherty left the courthouse without talking to reporters.

----------------------------------------------------------------------------------------Family Family forced to head to UK for autistic son's sake

By Sharon O'Neill for the 7:30 Report

7.30 Report | abc.net.au/7.30

Posted Thu Aug 20, 2009 7:23am AEST
Updated Thu Aug 20, 2009 8:17am AEST

Lack of funding for autism forces family overseas

Forced overseas: The Maxwells are moving to the UK to get treatment for their autistic son (7.30 Report)

* Video (Click heading to go to article & video)

A New South Wales family have made the gut-wrenching decision to leave the home and friends they love and move to the UK because they say Australia cannot provide the support and services they need for their autistic son.

It is estimated that 500,000 Australian families are affected by autism.

Many of them struggle not just with the needs of an autistic child or adult, but with the huge costs associated with the array of therapies required.

For the Maxwell family, that struggle came to an end last week when they decided Australia was not the place to provide the support and services needed for their autistic son.

"Our whole lives have just been packed up today and put into that truck and it's gone," father Kevin Maxwell said. "It's very surreal."

"This is really exciting for us because we really hope that we can get something better for Jonah. But the other side of the equation is it's sad.

"Things have to be pretty severe for us to give up that sort of a home base, that foundation, and go to the other side of the world."

Jonah Maxwell was born a normal, healthy boy, who up until the age of two was happily reaching every developmental milestone.

"He had all his skills," Mr Maxwell said. "He spoke. He'd talk. He knew colours, and then around two years 10 months we noticed a big regression.

"He just started losing a lot of those skills. He became more withdrawn, starting speaking less, and over a number of months he just became more and more withdrawn."

Jonah was diagnosed with childhood disintegrative disorder, a rare and severe form of autism.

"It was a shock," Mr Maxwell said. "I remember [my wife] Annette calling me up at work and I had to leave work and come back. It was devastating.

The diagnosis of autism was the start of a difficult journey for Jonah and his family.

He needed a range of specialist treatments and therapies, and they all came at a cost.

"I couldn't put an exact amount to it, but between lost wages and therapy bills, Jonah over the last three years has probably cost us $80,000 to $90,000," Mr Maxwell said.

Nicole Rogerson, the founding director of the advocacy group Autism Awareness, is also the director of the Lizard Children's Centre, a private clinic for autistic children.

Her son Jack has autism.

"I make a joke that the one thing you need when you have a child diagnosed with autism is a good strong credit card," she said.

"But you know, it's true. You need to get intervention for that child. There needs to be a lot of hours. That's where the money becomes involved.

"Children with autism have a pervasive developmental disorder. It affects every part of their life.

"So, their ability to speak and to communicate, their social skills, their ability to go to the toilet, their ability to eat a range of foods.

"In order to get them back from where they are, we need to remediate everything. So it's really important that they have as many hours as possible in intervention."

Last year the Federal Government announced details of its long-awaited funding program for children with autism.

The $190 million package provided families of autistic children with an annual payment of $6,000 for two successive years, up to the age of six.

But it still fell short of what is required to meet the Government's own best-practice guidelines.

"It's giving parents access to maybe once a week they see a speech pathologist, they see an occupational therapist maybe, but essentially it is only really going to mean a child is getting two or three hours at the most of early intervention a week," Ms Rogerson said.

"The Federal Government published their own reports saying children need a minimum of 20 [hours].

"So whilst it's great, and I don't mean to sound like it's not helpful to some families, unfortunately $6,000 is simply not going to do it."

End of the road

Bill Shorten, the Parliamentary Secretary for Disabilities, says the Federal Government has, for the first time, provided literally thousands of dollars plus allied and professional health services to children.

"What I can't say is that we've reached the end of the road or we've solved the problem because we simply haven't," he said.

When the Government's autism package was announced, Jonah Maxwell, who had turned six and was attending full-time school, was not entitled to assistance.

But earlier this year the Government expanded eligibility for the program to include children like Jonah.

It was to be assessed on a case-by-case basis.

"We thought great, here is a hope - $6,000 - it will just pay for his speech therapy bill for a year," Mr Maxwell said. "It really got our hopes up.

"But then to be rejected on the fact that he goes to full-time school, it just doesn't make sense.

"It was so frustrating and that was one of the driving issues or results I guess that tipped us over the edge and thought we're going to have to look to other places to live.

"It is just not affordable. It's not happening here in Australia."

When Mr Maxwell began making inquiries about the support available to autistic children and adults in the United Kingdom, he was surprised by what he learnt.

"The primary difference is that the local authority has a statutory duty of care," he said. "They have to look at the child.

"Jonah has been at school here at an autism-specific school for a year-and-a-half.

"The NSW education department know him. They know of his paperwork. They've never come and seen him. They've never sat down with us and said, "Right, your child has a disability. What can we do for you? Where should we go for this?"

"When we go to the UK, within three months - we've been told it should only take two months - the local council have to sit down with us, assess Jonah and come up with an education plan for him."

No choice

Mr Maxwell has given up a full-time position as a producer at the ABC, but he says it is the sacrifice made by his two older children that pains him most.

"They're brilliant. You just look at them, the way they interact with Jonah, they love him and they do understand.

"They've seen what's happened. They've cried with us. They know how hard it is."

The family believe they do not have a choice.

"The education system in Australia, in my opinion, does struggle with children with autism," Mr Shorten said.

"The challenge for providing greater support for parents of children with autism is the challenge that all carers and all people with impairment face.

"That is the rest of the community doesn't always want to know, and what we have got to do is keep debating within government and within the community at all levels of government and say, hey, this child with an impairment needs more support."

But for the Maxwells, the time for debating is over. And as they say goodbye to Australia, Mr Maxwell is convinced his family are the lucky ones.

"We've got an option," he said. "We have a plan B. We can go to England.

"God knows how many tens of thousands of families are out there suffering.

"They haven't got a plan A. They haven't got a plan B. The system's deserted them.

"We have to give the best possible chance we can to our son."

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 08/17/2009(Smart Brief)       

An inclusive Iowa summer day camp is the first in the state to combine activities for children with autism spectrum disorder and their peers without autism. "They're learning great things," said a Camp Be A Friend official. "Children teaching children how to behave, how to socialize (and) how to be friends." A two-week pilot session at the new camp served 43 children, about half of whom have autism, and there are plans to expand next year.

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(By Cailin Riley
Aug 17, 09 10:37 AM                                                                                           The East Hampton Press & The Southampton Press)

Thanks to blue skies, a gentle breeze and calm ocean conditions, the parking lot at Cupsogue Beach in Westhampton Dunes was packed to the gills on Saturday with families taking advantage of what was a picturesque summer day.

But for a certain group of parents and their children, it was more than just a nice day at the beach.

For the third consecutive year, Community Options, Inc. hosted its iMatter Surf Camp for children with autism spectrum disorders. Community Options Inc. is a national non-profit organization that provides residential, employment and recreational services to individuals with disabilities. The camp was started three years ago and is based on research that supports the concept that water is effective as a therapeutic tool and can also help encourage functional movement and range of motion for children with developmental disorders. The camp also aims to give children a chance to have fun and build self esteem.

Dr. Jessica Guberman, the executive director of Community Options Inc., says she has been thrilled to watch the growth of the camp. In 2007, the first year, 20 children took part in the camp, but on Saturday, a total of 95 children participated.

"The iMatter Surf Camp is a magical day," she said. "Families are so eager to sign their children up for the event and to participate in an innovative and inclusive activity that connects children to the fun and therapeutic advantages of the water."

On Saturday, parents watched from the shore, cheering and offering words of encouragement to their children as they were gently guided through the small shore break on large foam surfboards. There was plenty of laughter and smiles and no signs of frustration or tantrums; most of the children looked content to stay in the water for hours and eagerly scampered back onto their boards after each ride.

Paula and Michael Prestia of East Setauket were at the camp for the first time on Saturday with their son Anthony, 14. They said that after attending another surf camp for children with developmental disorders last year and seeing their son enjoy it so much, they were eager to try it again.

"The last time we did it, he got up on the board," Paula said. "He's pretty good in the water."

Paula watched her son and took pictures as she spoke about the camp and the positive impact it has had on her son and the other children in the water.

"It's a wonderful thing they do," she said. "It's a great opportunity that these kids would normally never have."

When asked if Anthony gives her any feedback about his experience once he gets out of the water, Paula said it wasn't hard for her to discern that he was having a good time.

"Look at his smile," she said. "Certain things you don't need words for. He's not looking to come out."

Jennifer Brown of Ronkonkoma said that the camp has worked similar wonders for her son Robert, 12.

"He absolutely loves the waves," she said. "If he keeps wanting to do it again, then I assume he's loving it."

Jennifer, like Paula, spoke highly of the surf camp and the people who put it together.

"They're phenomenal," she said. "I love Jessica for figuring this out."

For more information, contact jessica.guberman@comop.org.

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From The Sunday Times
August 16, 2009

Families complain there is not enough support and a postcode lottery syndrome for sufferers of autistic-spectrum disorder.

Peter Griffin is 29, he has an IQ of 159, a degree in astrophysics, and a gallows humour about his Asperger's syndrome, an autistic-spectrum disorder that makes social interaction so difficult that his longest - indeed his only - stretch of paid work has been a Saturday job in Tesco, which he has had since he was 16. He is so wired after his shift that he is awake until 4am and it takes him the rest of the week to recover: "At the end of a day trying to be ‘normal', acting the part, wearing the mask and reining myself in, I'm like a pressure cooker."

Very few people outside his family seem to understand Peter's needs. At 11, an educational psychologist said, "I'm happy to tell you that Peter is among the top 2% of the population," which, since Peter was unable to get anything down on paper, made his parents feel worse rather than better. "His teacher used to say, ‘If only I could find the starter button.'" At secondary school, homework involved standing next to his mother, Ann, who would say, "Why? What? When?", then quickly type what he said. "He knew all the answers. But his thinking was, ‘Why are they asking?' It made no sense to him."

Peter's contextual memory is so bad he doesn't remember this, but Ann, who works full time at a local college, vividly recalls the late-night battles. Peter couldn't stand the crossing of the boundaries between school and home: "They are two separate entities and I didn't like the lines being blurred," he says. Because he didn't conform, he was labelled uncooperative and lazy. Only his maths teacher seemed to get him. He told his parents: "Peter is Peter. We should encourage him to be himself, not change him."

But being Peter has not been easy. Asperger's was not recognised or routinely diagnosed until the early 1990s. Peter says he thought he was going mad. Ann remembers ringing round, trying to get some support for him, and being told it was her problem. She needed to let go. Then, when the Griffins' youngest child, Stephen, started school, Ann went in to see his teacher and watched aghast as Stephen collected hundreds of rubbers and lined them up under a chair. "I said, ‘Do you think he's like Peter?' And his teacher said, ‘I think he's much worse.' " Stephen's severe autism was diagnosed at eight, at which point the penny dropped and Peter, then 19, got his diagnosis.

"Michael, our second boy, is what we call neuro-typical," says Ann. "He was sociable, able, all the things Peter and Stephen weren't. He was our touchstone. We kept saying, ‘Thank God for Michael, because we know we're not bad parents.' "

Stephen Griffin is clear-skinned and luminously good-looking, an 18-year-old with the guilelessness of an eight-year-old. His passion is racing cars. He can tell you the name of every Formula One champion back to 1950, yet he doesn't understand that a bus that takes him one way will also bring him back. The rest of us assume an awful lot about the world, based on knowledge we have gathered and processed. People on the autistic spectrum assume nothing: just because a traffic light turned from red to green last time, it doesn't mean it will do so again. It makes every step a perilous one.

With his mother's help, Stephen got a handful of GCSEs - Ann took two weeks off work and together they learnt about the Chinese revolution and the life of plants. But since his statement of special needs ended at 16, he has had no transitional support. Apart from taking an animal-care course at college - the idea being that through caring for animals, he would learn about taking care of himself - he has been stuck at home, watching racing on TV. He has a normal IQ but is profoundly autistic. If you say, "Would you like to work in a shop?", he will say "No", because he has no way of knowing if he'd like it. And anyway, one shop is not the same as another.

Support for Stephen has been patchy and fairly pointless. "I want to help him move towards work," says Ann. "But the courses available to him seemed designed purely to keep him out of his bedroom for a year."

Last year, as part of its I Exist campaign, the National Autistic Society (NAS) commissioned the largest ever UK survey on the experiences of adults with autism and their families. It identified a fundamental problem: nobody - not government nor health authorities nor primary care trusts - knows how many autistic adults there are in England. No wonder, then, that so many don't have access to the services they need. The National Audit Office, crunching the figures it has on children, estimates that there are half a million people with autistic-spectrum disorders in the UK, of whom around 400,000 are adults, ranging from the mildly affected to those who will need lifelong care. A recent study suggests that autistic adults cost the economy around £25.5 billion a year, 36% of which is accounted for by lost employment. The government is now committed to developing a national adult-autism strategy, which includes the appointment of a full-time autism specialist within the Department of Health, and training for social and healthcare professionals. Every parent has his or her own professional horror story, from the GP who thought Asperger's was a childhood syndrome - "Do they think kids magically shed ASD when they're 18?" asked one parent incredulously - to the social workers who repeatedly lump young adults with ASD (autism-spectrum disorder) together with those who have mental-health or severe learning difficulties.

Dedicated teams within local authorities will now be tasked to ensure that every 14-year-old with a statement has a transition plan. This is a statutory requirement set out in the SEN (special education needs) code of practice, yet at present only 34% of children with ASD have them. The consequences of getting things so badly wrong are huge. Currently, only 15% of adults with ASD are in full-time employment, and they report that their experiences at work are marred by misunderstandings and inadequate support.

Peter Griffin still shares a bedroom with his 25-year-old brother, Christopher. Christopher has a long-term girlfriend, and their brother Michael, 27, is married. Does Peter see himself married one day? "Oh dear," he says. "Hmmm. Yes and no." My questions on this subject are relayed through Ann. Peter is keen to answer, but points out that I'm looking at all this from a neuro-typical point of view. "I've never had a girlfriend, so how can I know if I'd like one?" Do you have friends? There is a long pause. "Not really, no. It's difficult. To develop. To maintain..."

He says working out the basics of social etiquette has been "like learning times tables".

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  On August 17 'Rocklin & Roseville Today' published an article about this book;

101 Games and Activities for Children with Autism, Asperger's, and Sensory Processing Disorders

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Police conference to address dealing with autism                                  

Regine Schlesinger Reporting                                                                        Posted: Monday, 10 August 2009 8:29AM

CHICAGO (WBBM) -- Among other topics, a 2-day police conference in Rosemont this week will deal with how police should handle encounters with autistic people. WBBM's Regine Schlesinger reports that misunderstandings sometimes can lead to explosive and even deadly results.
Midwest Security & Police Conference Autism Alliance for Responder Training

Last April, Chicago police were accused of beating an autistic teenager after a confrontation. It's one of a growing number of cases of police interacting with autistic people and sometimes misinterpreting their responses.

While there are no physical features to distinguish people with autism, Chris Lacey, founder of the non-profit group Autism Alert, says they react differently, "A lot of persons with autism cannot tolerate being touched so if a police officer would touch them lightly on the shoulder and say 'Are you okay?' that person may strike out or may become combative."

Lacey, the parent of an autistic child, trains police to recognize the signs of autism. She'll conduct a workshop tomorrow at a police conference at the Stephens Convention center in Rosemont.

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Some Said Teen Was 'Threat' To United Airlines Flight                                  

It happened last month as Candice Dinicarlo and her 17-year-old son Gavin were en route back from Chicago. Dinicarlo said the airline broke the law and she's determined to make sure it never happens again.

Dinicarlo said the United Airlines flight was traumatizing for her son after he had just received a month's worth treatment for his autism, and she is angry because she believes he was the victim of discrimination.

Gavin Dinicarlo is severely autistic. He can't talk and he needs help to walk.

The 17-year-old and his mother were on a flight headed to New Orleans when the plane was turned around because of a sick passenger. While descending, all electronics had to be turned off, including a DVD player that Gavin Dinicarlo was watching.

Moments passed, the sick passenger was off the flight and Candice Dinicarlo said her son was calm. She said the captain started to take off again but stopped.

"It kind of teased him, so he starts yelling again and stomping his feet," she said.

The captain said there was another issue to address.

"I see three Chicago police men, two United Airlines supervisors and paramedics walking down the aisle of the plane," Candice Dinicarlo said.

She said she and her son were kicked off the flight.

"'The captain has made up his mind,'" she said they were told. "'He has made his decision and he does not want you all on the plane.' And I said, 'On what grounds?' None of them gave me an answer."

Due to her son's outbursts, the airline said, some people thought he was a threat, even though other passengers came to his defense. Still, the mother and son were booked on a later flight.

"If he is such a threat, why are you going to put him on any other plane?" Candice Dinicarlo said.

Now she's pursuing legal action, but she said what she wants most from the airline is "to be sorry and to realize that you can't go around treating people like this."

She said she believes United was in violation of the Air Carriers Access Act, which prohibits discrimination in air transportation by domestic and foreign air carriers against individuals with physical or mental impairments.

WDSU contacted United Airlines and was referred to Shuttle America, the operator of that flight. A media representative said via e-mail that the case is under review.

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 UPDATE AUGUST 23rd 2009

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