The Autism News | English

Joanne Rathe, Globe Staff Photo

By Kathleen Burge | The Boston Globe

Eliza Mury was only one year old when she said her first word — ”doggie” — and a few more words followed. But soon her parents noticed that her vocabulary seemed frozen. Speech therapy didn’t help.

Eliza’s mother, Aimee Mury, took her daughter to doctors and specialists, but none diagnosed anything more serious than a hearing deficiency. Friends and relatives, though, had gently begun to suggest that Eliza might be autistic. Aimee Mury was so fearful of the condition, she could barely say the word.

After repeated exams by specialists, Eliza was diagnosed with autism when she was 2 1/2, in the spring of 2007. Aimee Mury read everything she could about the condition. But as she learned about traits and treatment, she had a hard time seeing what an autistic child looked like.

”It’s very hard initially to meet other people and kids,” Mury said. ”I was on YouTube and I was trying to search for autism. And I found there was very little out there.”

Nearly three years after Eliza’s diagnosis, Aimee Mury has helped create a movie about her daughter and their struggle to get her diagnosed called ”Eliza, My Songbird.” The movie, produced and directed by Mury’s neighbor, Zadi Zokou, will have its first public showing Sunday at Natick’s Morse Institute Library.

Mury, 42, saw the movie as a chance to help other families with autistic children get diagnosed more quickly than Eliza. But Eliza also plays a prominent role in the movie. Mury and her husband, John, pastor of Natick’s Beacon Community Church, hope that making autistic children more visible will help diminish the stigma of the neurological disorder.

”I think it’s a wonderful tribute that she is willing to do this,” said Kelly Gryglewicz, a member of the board of directors of the Autism Alliance of MetroWest, and a friend of Mury’s. ”A lot of people are not willing to disclose the diagnosis.”

Getting Eliza diagnosed with autism was a long and frustrating process that began when the girl was 18 months old. Appointments with specialists took months to book, and in the beginning, none of them believed Eliza was autistic. Girls are less likely than boys to be autistic. And while many autistic children shy away from social contact, Eliza was very social — even though she was indiscriminate, trying to sit on a stranger’s lap, for instance.

”That’s what I was quickly learning was that even within the professional group, there’s a lot of misunderstanding of what a child with autism can look like,” Aimee Mury said.

Finally, a friend who works with families with autistic children persuaded the Murys to see a neuropsychologist, and this time the diagnosis was firm: Eliza had autism. The doctor saw Eliza on a Saturday and he told Mury to get on the phone the following Monday, trying to set up the array of services she would need. Now Eliza spends about 26 hours getting special services at Johnson Elementary School in Natick.

Once Aimee Mury began researching autism, she realized her daughter had some of the classic signals early on: She didn’t point to things. She didn’t respond to her name. She didn’t show her mother things. Mury made the film hoping it might encourage other families to get their autistic children diagnosed early.

Now, at 5 1/2, Eliza says only a few words and the name of the movie came from the noises she made when she was younger. ”She chirped just like a bird as toddler,” her mother says, in the movie.

The Murys make a point of taking their daughter out in public, even though it may create awkward situations — Eliza has tried to drink out of a stranger’s cup. But when they explain that she is autistic, others are usually understanding.

The last few years have been hard on the Murys. Aimee Mury discovered she had inherited a gene linked to breast cancer and a rare form of stomach cancer — which killed her mother in her 40s — and underwent nine surgeries in three and a half years, removing her stomach and both breasts. John’s brother died unexpectedly a little over a year ago.

When Mury told her neighbor, Zokou, that she wanted to make a YouTube clip about her experiences getting Eliza diagnosed and finding services for her, he offered to help. Zokou is a sales associate at Neiman Marcus but he was a screenwriter in his native country of the Ivory Coast.

When Mury told him about her plan, he had recently bought new film equipment and he told Mury he would help her. Zokou encouraged her to think bigger than YouTube. Next, Zokou would like to raise money for a longer film about Eliza and the rest of her family.

When Mury was done telling her story for the film, Zokou asked her a few more questions. He wanted to make the film more personal.

”I wanted her inner feelings about having an autistic kid,” he said. ”I was glad that she answered the questions.”

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Source: http://www.boston.com/yourtown/news/natick/2010/03/film_tells_of_natick_mothers_a.html

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The Autism News | English

By Jennifer Lebovich and Kathleen McGrory | Miami Herald

Three boys were charged Wednesday in the sexual assault of an 11-year-old autistic girl in an elementary school restroom.

One of the boys, also 11, followed the girl into a restroom at Norland Elementary School in Miami Gardens earlier this month and forced her to perform oral sex on him, authorities said.

He is charged with sexual battery on a child under 12 and with false imprisonment.

The two others, ages 13 and 11, acted as lookouts outside the restroom, the arrest report said.

The Miami Herald is not identifying the youths because of their ages.

“It’s a terrible, unfortunate incident,’ said Miami-Dade Schools Police Chief Charles Hurley. “I don’t know where youngsters are learning some of these things. These are acquired behaviors.’

The girl’s mother said she did not find out about the attack until two days later, when she got a call from the school. She said, though, that family members noticed a change in the girl’s behavior right away.

“She wouldn’t hold her head up, she wasn’t the same,’ said the girl’s mother.

The girl has Asperger’s syndrome, a mild form of autism, and is in a special education class at Norland Elementary, 19340 NW Eighth Ct.

The girl’s mother and attorneys hired by the family called for more security to prevent such incidents in schools.

“Two places your children should be safe: home and school,’ the mother said. “That should be a safe haven for them.’

The attorneys said they had not ruled out taking legal action.

A schools spokesman said the alleged assailants had been suspended and would be recommended for expulsion. The three, who were charged as juveniles, were not physically taken into police custody. Instead, the department filed the charges directly with the Miami-Dade state attorney’s office.

Police said the assault took place about noon March 3. The girl had been in a class preparing students for the FCAT, the attorneys said.

She was in a restroom when one of the boys came in and locked the door.

The boy “told the victim to get on her knees and he unzipped his pants,’ the arrest report said. He then made her perform a sex act .

The two other boys were outside the bathroom acting as lookouts, the report said. They were charged with false imprisonment and as accessories to sexual battery.

Hurley, the schools police chief, said his department approached the case “with an extreme amount of caution, care and sensitivity.’

“Instead of just making a quick arrest, we tried to gather as much information as we could,’ he said.

School administrators said they were reviewing procedures at the school.

Hurley said schools remain a safe place for children.

“We open our doors every day to 340,000 kids,’ he said.

Source: http://www.palmbeachpost.com/news/crime/three-boys-charged-in-miami-dade-elementary-sex-445346.html

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The Autism News | English

By Mike Steketee | The Australian

Voters are being asked to back only parties that promise a national disability insurance scheme

IN the 1976 movie Network, Peter Finch in his role as a television broadcaster urges people to go to their windows, stick their heads out and shout: “I’m as mad as hell and I’m not gonna take this any more.” Windows are thrown open and the words echo around the country.

Australians with disability and their supporters are hoping for something similar from the campaign they are launching via their “australiansmadashell” website. As it says, “we are not going to take it any more — and there are millions of us”.

They are asking people to take a pledge to vote in state and federal elections only for parties that promise to introduce a national disability insurance scheme. The responses will be compiled and candidates, particularly in marginal seats, will be told of the number of pledges in their electorate.

An insurance scheme, rather than paying a welfare benefit or damages, as with motor vehicle or workers’ compensation schemes, would provide the essential services and facilities to the disabled and increase their prospects of a meaningful life, including a job. It would constitute a landmark economic and social reform and, while costly in the short term, would pay for itself in the long run, according to its proponents.

The insurance concept is based on the fact that all Australians are at risk in life’s lottery, whether they are among the one in 160 born with autism, one in 400 with cerebral palsy, are blind or deaf, have Down syndrome, suffer severe intellectual disability, fall from a skateboard and suffer brain damage, or dive into the surf and end up as a quadriplegic. As Sue O’Reilly, one of the campaign organisers, puts it: “This is not something that happens to Martians on another planet.”

People decide how to vote for all sorts of different reasons and there are any number of issues jostling for a place on the political agenda. But grey power helped elevate the concerns of older Australians up the scale of political priorities and the Women’s Electoral Lobby succeeded in putting issues such as child care on the agenda.

The Australian Institute of Health and Welfare estimates there are 1.5 million people with a severe disability and that will grow to 2.3 million by 2030. Including parents and other primary carers, extended family members, disability support workers, health professionals and specialist teachers, organisers say their campaign could influence more than 2 million voters, people for whom disability is not just one of many issues but central to their lives.

For years, the disabled and those supporting them mostly have accepted their lot, often consumed by the daily struggle to survive. Now, something is definitely stirring. O’Reilly says they hit on their theme because they kept hearing people saying, “I’m just so angry, just so fed up.” Under her maiden name, Corrigan, she wrote an article last year for The Weekend Australian Magazine that told of parents who, at the point of collapse, resorted to abandoning their children in emergency respite centres. She wrote of her experiences raising a son with cerebral palsy, how the lack of support drove her family to live in England, where there is a legal right to vital equipment and services, including a residential secondary school.

The death of her husband prompted her to return to Australia, to be confronted all the more starkly with the lack of services here. Her article prompted one of the biggest reader responses the magazine has received.

Last weekend’s South Australian election saw the election to the upper house of Kelly Vincent, a 21-year old wheelchair-bound candidate for Disability with Dignity. She replaced the lead candidate, Paul Collier, who died during the campaign but whose name remained on the ballot paper. The party received only 1.2 per cent of the primary vote but came ahead of a string of other single-issue parties and independents, and picked up enough preferences to win a seat.

The Rudd government’s Parliamentary Secretary for Disabilities Bill Shorten has no doubts about the political potency of the issue. “I have a 100 per cent conviction that this is far more important than Canberra insiders, including in the press gallery, have treated it up to now,” he tells Inquirer.

As for the new campaign, “I am very supportive of moving disability from the important to the urgent column.”

To a considerable extent, it is the government that has given the issue traction.

It set up a Disability Investment Group of outside experts who reported that, despite governments spending $20 billion a year on disability welfare through a patchwork of programs and an army of 2.5 million family members and other carers providing unpaid care and support, the present system was “a national disgrace”, with glaring gaps and increasing unmet demand.

It warned that the demand for services was growing at 7.5 per cent a year after inflation, with a rising incidence of disability as the population aged combining with a shrinking pool of ageing carers and the huge cost of replacing informal, largely unpaid care with formal care. The group’s principal recommendation for a national disability insurance scheme would use a social insurance model to assess the risk of disability in the general population, calculate the costs of meeting their essential lifetime needs and estimate the premium or cost required to pay for them.

The emphasis would be on early intervention and access to education and training to maximise long-term independence. The government has asked the Productivity Commission to look at the feasibility and costs of such a scheme, as well as other options for long-term care and support. In the meantime, the government has substantially increased funding to the states for disability services and guaranteed real increases of 3 per cent a year, as well as increasing the disability support pension and the carer payment.

Bruce Bonyhady, chairman of Yooralla, Victoria’s largest disability service provider and a member of the group, says its work established the significance of disability as not just a social but an economic issue, “one with quite profound economic implications if we don’t do anything. We are at a tipping point where it is now becoming a political issue. Once you have an all-embracing solution like an [insurance scheme], you open up the possibility that it becomes a political issue, as opposed to a partisan issue.”

The major parties will have difficulty making an ironclad commitment to such a scheme, given the Productivity Commission is not due to report until the middle of next year. It is a scheme that comes with a price tag: a net $4bn to $5bn a year to cover people aged under 65, according to an analysis by PricewaterhouseCoopers. It also argues that the scheme could pay for itself, possibly after 10 years, through reduced disability support pension and carer payments, and lower bills for health, aged care and other social programs.

Bonyhady says the scheme could be funded through a Medicare-type levy of 0.8 per cent of taxable income. Politicians will baulk at a new tax, particularly in an election year, although Tony Abbott will find it harder to invoke his great big new tax argument on this issue.

However the parties react to the election pledges she is seeking, O’Reilly will be happy if she hears Kevin Rudd and Abbott declare their commitment in the next term of government to a radical overhaul of the disability system.

Source: http://www.theaustralian.com.au/politics/opinion/disability-group-mad-as-hell-and-ready-to-fight/story-e6frgd0x-1225845897896

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The Autism News | English

Published by Trumpeter Books

Given the daily challenges of raising a child with autism, it’s easy for parents to lose themselves and for their overall quality of life to plummet.

The Autism Mom’s Survival Guide contains many parents’ stories and ideas (including my own) on handling feelings of despair and hopelessness, caring for your marriage, enjoying your life as an adult — not just as a parent — having fun with your kids, finding a good balance between accepting your child and seeking new treatments, dealing with the rest of the world’s attitudes towards your child, looking toward your child’s adulthood, letting go, and allowing yourself to find your own joy even in the midst of great struggle.

Paperback: 208 pages
Publisher: Trumpeter (March 30, 2010)
Language: English
ISBN-10: 1590307534
ISBN-13: 978-1590307533
Product Dimensions: 7.6 x 5.4 x 0.6 inches

Click to look inside

Source: http://susansenator.com/survivalguide.html

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The Autism News | English

By Fox 41 | Louisville News

Michala Riggle is taking her “Beading to Beat Autism” project to prison. Wednesday the 13-year-old from Louisville spoke to nearly two dozen inmates at the Kentucky Correctional Institution for Women. The women have volunteered to bead bracelets to be sold on her website.

KCIW Warden Janet Conover explains, “I think the inmates get a sense of giving back to the community. You know they’ve committed some crimes, been convicted by a court, and this is their way of giving back to society in a positive way.”

Jail officials say more than thirty inmates signed up, but only 23 are participating. The program’s goal is to help in raising $300 million to build the most comprehensive autism research and treatment center in the world.

Source: http://www.fox41.com/Global/story.asp?S=12197465

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The Autism News | English

By WorldAUtismAwarenessDay.org

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.

UN World Autism Awareness Day Resolution (.pdf format)

Source: http://www.worldautismawarenessday.org

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The Autism News | English

By Mof Gimmers | TV Scoop

Most young adults take their freedom for granted – they can choose their friends, stay out late, learn to drive and decide what they want to do as a career. For people growing up on the autistic spectrum, life can be very different. But what is it like to grow up living with autism? In a series of warm and insightful films, BBC Three explores the complex lives of these young people as well as the challenges they face.

Danny Cohen, Controller BBC Three, says: “Thought-provoking factual programming sits at the heart of BBC Three and I hope the diverse range of documentaries and events in the season will be insightful, challenging and inspiring.”

The Autistic Me – 1 Year On

Following on from last year’s acclaimed documentary, The Autistic Me, this new film catches up with Oliver, Alex and Thomas a year after director Matt Rudge first met them. For the lives of these young men on the autistic spectrum, the last 12 months has seen some dramatic changes and upheavals in all of their lives, as they continue their journey into adulthood.

Oliver, 25, has high functioning autism and had been searching for a job. In the first programme, a temporary contract at the British Library had come to an end and he was desperate for something to do so he could have a routine and find self worth.

A year on, Oliver has moved out of home but is still desperate for work. Attending a course specifically designed to help people with autism find work, he’s been attending mock interviews and has work experience at a supermarket. But, with an encyclopaedic knowledge of British history, is stacking shelves really all he can get?

Tom, 16, has Autistic Spectrum Disorder. His frustration with a lack of independence was at boiling point and his parents thought it best he spend some time away from the family in a residential care unit.

Tom is no longer at the care unit. He and his family have moved over 300 miles to start afresh in Cornwall. However, their idyllic dream move is proving a challenge for everyone – especially Tom. He finds himself isolated in the countryside, with no friends and contemplating the pressures of having to attend a mainstream college.

Alex, 25, has Asperger’s Syndrome, was using the internet to find a girlfriend and had been on a first date with Kirsty, 20 – another girl with autism.

A year later, Alex is doing well at work and Kirsty has become his girlfriend – but he still hasn’t actually seen Kirsty since their first date. They live in separate towns and traveling to see each other is difficult and challenging. But Kirsty’s birthday party is fast approaching and he plans a trip to see her. What does the future hold for a relationship such as theirs?

The Autistic Driving School

Most teenagers want to learn how to drive. It represents a coming of age, a new beginning and a sense of freedom, but it is a daunting and stressful experience even for the calmest of individuals – much more so for those with autism.

For some young people on the autistic spectrum, learning to drive represents the independence they often find so difficult to achieve in the rest of their lives. Many Autistic people cannot cope with noisy and unreliable public transport, crowds, or even being looked at by strangers. Learning to drive is a crucial aspect in their transition into adulthood – but it’s not easy.

This new film follows a group of young people on the Autistic spectrum all coping in different ways with their condition, and at different stages along their journey towards learning to drive.

From first lessons, to taking theory and practical tests, the programme captures the highs and lows of their experiences, revealing how varied and surprising autism can be.

The programme introduces 22-year-old twins Lucy and Lizzy, who share everything in life, including their driving lessons. After three-and-a-half years with their instructor they are ready to take their tests.

Karting enthusiast Chris was diagnosed with Semantic Pragmatic disorder when he was very young, but is a super-confident driver. He’s booked in for his practical test but, with a tendency to drive too fast, will he pass?

David and Laura are complete beginners but hope learning to drive will help their career prospects and personal lives.

The programme also examines what life is like for people with autism who have their driving licence. Twenty-six-year-old Sarah passed her test first time in 2004, but she’s too scared to drive. Her Asperger’s syndrome means she is full of anxiety and terrified of crashing, but she is desperate to get back behind the wheel.

Julia is the only driving instructor in the UK to have been diagnosed with Asperger’s syndrome. She’s studying for two degrees and is a member of Mensa, but how will a new student do under her guidance?

Taking a driving test is something that everyone can relate to – but a rite of passage many people may take for granted.

Autism, Disco And Me

Andy and Sheila Hobley have three children, 16-year-old Alex and 10-year-old twins George and James. But they are not a typical family – all three boys have autism. Alex is an Emo, George likes playing computer games and James likes dancing – he is, in fact, a champion disco dancer.

Two years ago, James couldn’t read or write – he struggled at school and was happier playing with his cats than talking to his family. Then, a leaflet for disco dancing lessons dropped through his door – and changed his life for ever. Within six months, he’d won countless competitions and was crowned “best beginner” at the World Disco Championships.

Now, James’s goal is simple – he wants to win what’s arguably the biggest disco competition out there – Disco Kid – in Blackpool.

James’s family believes dancing has “unlocked” his mind. Since he started dancing, his reading and writing has improved drastically, his memory and coordination has got better and, for the first time in his life, he has friends.

Andy and Sheila have invested thousands of pounds on dance lessons, travel and fancy costumes preparing James for competitions, but believe the remarkable transformation they have seen in their son has been worth it.

This one-hour film reveals how dancing has transformed James’s life and follows him on his incredible journey. James believes that dancing has fixed his brain, but will his progress be enough to see him through to the final of Disco Kid?

The Autistic Proms

A two-part documentary series with a unique event at its heart has been commissioned as part of BBC Three’s Living With Autism season. The Autistic Proms (working title) follows a group of young autistic people with a passion for music, as they prepare for what could be the biggest night of their lives.

Fronted by BBC Radio 1’s Reggie Yates, the two 60-minute documentaries will follow a cast of young people aged 11 to 23 during the build-up to a one-off performance to be held at a major London venue.

The line-up includes young people from right across the autistic spectrum. They all have exceptional musical talents, but behind the stage curtain it is a very different story. Everyday life poses many challenges, for them and their families, but through creativity they become freer to communicate with the world around them.

The documentary will allow access to each of the cast members’ lives, revealing their daily struggles and triumphs – helping to shed light on a condition that affects over 500,000 people in Britain. The event is an opportunity for young autistic people to show their talent and creativity on a high-profile stage, within an atmosphere that is sensitive to their condition.

Samantha Anstiss, BBC executive producer, says: “The Autistic Proms (working title) is an inspiring addition to the upcoming Living With Autism season. As well as witnessing the determination of young people with Autistic Spectrum Disorder taking on a momentous challenge, the audience will be led on a journey of awe-inspiring moments towards a celebration of artistic excellence.”

The first film will introduce the UK and US cast, unveiling their established or untapped talent. Through the build-up, training and mentoring for the public event the film will reveal the hurdles, conflicts and personal triumphs of these young people and the professionals and relatives that care for them, as they prepare for the night of the performance.

The second film will bring viewers closer to the big night, with everyone arriving in London and rehearsals taking place. The American performers will also arrive and join in with the preparations. The final part of the second film will document the event itself, capturing the energy, excitement and inevitable ups and downs occurring on and off stage.

Source: http://www.tvscoop.tv/2010/03/bbc_three_explo.html

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The Autism News | English

Photographed by Shannon Taggart

‘J-Mac’ Secret Weapon of Cornell Basketball Team During NCAA Tournament

By David Muir and Christine Brozyna

If Cornell is this year’s Cinderella story at the NCAA tournament, than Jason “J-Mac” McElwain certainly would be its prince.

J-Mac, who has autism, first captured the heart of the nation four years ago when, in the last game of his high school basketball team’s season, he was given his first chance to play. In just four minutes, he scored six three-point shots and finished with 20 points. He even tied the school record.

One of J-Mac’s admirers is Cornell basketball coach Steve Donahue, whose own son, Matt, has autism. Donahue reached out to J-Mac after that electrifying high school basketball game and the two have stayed in touch ever since.

“It was one of the greatest inspirational stories I had ever heard,” Donahue said. “Jason was having so much fun and enjoying the experience. It made me really happy that one day my son could have kind of experience as well in his high school.”

This year, J-Mac, now 21-years-old, joined Donahue at the NCAA tournament selection. In addition, he’s been calling and texting Donahue with advice for the team — including how to beat top NCAA teams Temple University and University of Wisconsin.

“Jason’s advice is unbelievable. The kid is on the money,” Donahue said. “What better way to motivate our guys then to have Jason come in and talk to them. He’s got a lot of great ideas and always ends them with an inspirational thought. I love hearing from him.”

Still, J-Mac, who is not a student at Cornell, is humble about his involvement with the team.

“I’m not taking anything away from the team,” J-Mac told ABC News.

But it was J-Mac’s text in the final minutes of the Wisconsin game that has had the most impact. It read, “If you don’t dream to become a champion, you won’t become a champion.”

Moments later, Cornell won again.

As J-Mac’s story continues to unfold, a new chapter is developing for the inspiring young man. He’s decided to turn his attention to the sidelines, and in addition to giving advice to the Cornell basketball team, he volunteers as a junior varsity assistant coach for his alma mater — Greece Athena High School in New York state. Next year, he’ll help with the varsity team.

He also works a job in the Greece, N.Y., area.

In the meantime, J-Mac continues to dole out advice to the Cornell team.

“I’ve been a part of many comebacks,” he said. “I’ve been a part of teams that have come back against us. I told them you have to finish the game.”

Source: http://abcnews.go.com/WN/autistic-teen-basketball-phenom-inspires-cornell-team/story?id=10199431

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