Keep Autism Awareness Alive: Help Prevent The Reality Of Falling Off A Cliff

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These are two stories that typically merit separate posts, but they clearly share a central theme and so I decided to put them together.  Growing up on the Autism Spectrum is difficult; for the individual, for parents, educators, siblings and friends.  It is made (relatively) easier by the degree to which that individual has support; financial, emotional, institutional or otherwise.  The harsh reality of new-found adult status can be jarring, if not entirely all-consuming and down-right depressing at times.  Gone are many of those supports that each individual has literally needed to make the progress that they have.  Gone also are many of the dreams of childhood; that unique innocence that sparks each autistic child to work towards something off in the distance.  

As a society, we need to have a plan to integrate young adults on the spectrum into that same civilized society.  Assistance with job placement? Yes!  Easier access to (more) Day Habilitation Programs? Yes again! Autism insurance reform? Hell yes! 

Autism awareness efforts can no longer be a grass-roots effort.  It must be a concerted, unified attack that has the full backing of local, state and federal agencies.  No autistic child who grows into adulthood should ever have to fend for himself to receive the same considerations that their neuro-typical peers get.  

On this last day of Autism Awareness Month, let’s all give our kids (children and adults alike) a hug, a kiss and a promise to keep their hopes and dreams, as well as their rights, alive.  -Ed

KIDS WITH AUTISM “FALL OFF THE CLIFF” AFTER GRADUATION

PHOTO: Janet Mino has taught her class of young autistic men for four years at Newark's JFK High School. But as they age out of the system, they have few options.

Janet Mino has taught her class of young autistic men for four years at Newark’s JFK High School.
But as they age out of the system, they have few options.

For four years, Janet Mino has worked with her young men, preparing them to graduate from JFK High School, a place that caters to those with special needs in the heart of one of the poorest cities in America, Newark, N.J.

All six of them have the severest form of autism, struggling to communicate, but Mino’s high-energy style evokes a smile, a hug and real progress.

Much of the work that she does may ultimately unravel because after these young men earn their diplomas, their future options are bleak — lingering at home, being placed in an institution or living on the streets.

New Jersey has the highest rate of autism in the nation and some of the best intervention resources. But after graduation, programs are scarce.

“They are adults longer than they are children,” Mino, 46, told ABCNews.com. “We need to give them a light. It’s up to us and up to me.”

“There’s nothing — nothing out there,” she said.

Mino, a whirling dervish of enthusiasm and warmth, is the subject of a documentary, “Best Kept Secret,” that recently premiered at the Independent Film Festival in Boston and will be shown at this weekend’s Montclair Film Festival in New Jersey.

Mino’s efforts to find resources for her students are Herculean in a school that is touted as the state’s “best kept secret.” Her efforts are exacerbated by poverty and lack of funding, but her classroom is a happy place as she finds ways to reinforce that they are capable and worthy.

“I look at it as a challenge — if I can get them as independent as possible,” she said. “They are so wonderful. They make you laugh. … They just think differently.

“Some people think that because they are nonverbal and can’t communicate, they can’t understand, but that’s not true. From my experience, they read us better than we read them.”

Director Samantha Buck [“21 Below”] and producer Danielle DiGiacomo, who is manager of video distribution at the Orchid, follow Mino and her students in their hardscrabble lives for 18 months leading up to their 2012 graduation.

“Autism is part of who we are as a society,” said Buck, 30. “Across the country, young adults who turn 21 are pushed out of the school system. They often end up with nowhere to go; they simply disappear from productive society. This is what educators call ‘falling off the cliff.'”

This year alone, 50,000 children with autism will turn 18, according to Sen. Robert Menendez, D-N.J., who has sponsored federal legislation to provide funding for adult programs. Within two years of high school, less than half of those with autism spectrum disorder have paying jobs, the lowest rate of any disabled group.

“Meanwhile, adults with ASD run the highest risk of total social disengagement,” Menendez told ABCNews.com in an email. “By the time they are in their early 20s, they risk losing the daily living skills they developed as children through supportive services.”

“Their families still need support,” he said. “The challenges they face will not disappear but only grow greater, and ultimately we will all pay the price for that.”

Today, an estimated 1 in 50 U.S. school-age children are diagnosed with some form of autism, a number that has been on the rise, according to the Centers for Disease Control and Prevention.

But the filmmakers said they did not want to focus on the “causes of autism and why.”

“Here are these human beings and they live in our world and are part of our society,” said Buck. “How do we integrate this huge population into our society?”

While on the festival circuit, Buck noticed the industry’s interest in films about autism.

“I pretty much cried at every single one,” said Buck. “They were predominantly centered around young Caucasian families with money.”

The filmmakers looked for an inner-city school that would tell a different story. With the help of Menendez, they found JFK High School, where they followed Mino’s students.

But funding is just part of the problem. Many of her students come from dysfunctional families that are challenged by poverty and lack of support.

Erik, the highest-functioning student in the group, is smart, talkative and great at following directions. He may be the most likely to make it in the real world. But his biological mother is too sick to care for him and he relies on a dedicated foster mother.

Robert’s home life is chaotic and it is reflected in his classroom work. He can read and spell, but is frequently absent. His father home-schooled him until dying four years ago. Now, an aunt, a recovering drug addict, looks after him.

Quran is the only one being raised by both his parents. He is able to read and control all of his behaviors, but his family doesn’t know where to turn for help.

“His parents spend every minute of the day thinking about him and his life,” said film producer DiGiacomo. “But they have to put food on the table and there is no time to access information on places where he can go.”

Parents work full time and need placement for their children when they go to work. Programs are costly and navigating the bureaucracy is difficult.

After-school recreation centers only operate from 10 to 1, impractical hours for working parents. And some families don’t even have cars.

“These are the simplest things that we don’t think about that can make or break families,” said Buck. “But they don’t have a woe-is-me [attitude]. This is their life and they love their children.”

Erik works hard when given direction and takes on a part-time job cleaning at Burger King.

“Everybody loves him,” said Buck. “They are good workers. This is not charity.”

But students need work coaches to help with the transition into a job, and Erik’s coach has 100 other clients.

Some will find part-time work or activities at a recreation center. Most of what is available resembles piecemeal factory work.

The filmmakers see Mino as the “heroine,” fighting to create meaningful lives for her students.

Mino said the intensity of filming the search for her students’ placements, she decided to fulfill a lifelong dream: to create her own center for young adults with autism.

She has now written a grant application to open the Valentine Center, which she calls the “center with a heart.”

Mino said she hopes to provide parent-friendly hours and transportation, as well as a variety of therapies and activities — “the basic things they need to survive.”

Until then, Mino continues to teach at JFK High School, where it’s all about her students.

“I fall in love easily,” she said.

“They are people,” director Buck said of Mino’s students. “If an audience can feel emotionally connected to Eric or Quran or a Robert, that might be an impetus to do something. It’s a first step.”

Buck said the making of the film was “kismet, in a way” and her hope is that viewers “watch the film they stop seeing these guys as young men on the autism spectrum and really get to know them. … It’s a first step.”

http://abcnews.go.com/Health/kids-autism-fall-off-cliff-turn-21/story?id=19068035#.UYALdKIp_5s

THE REALITY OF FINDING A JOB WITH AUTISM

Sarah Still has Aspergers and has spent years working a variety of jobs that don't seem to fit her needs.

Sarah Still has Aspergers and has spent years working a variety of jobs that don’t seem to fit her needs.

(CNN) — Smiling is something 30-year-old Sarah Still constantly has to remind herself to do, especially when she is going into a job interview.

Still has Asperger’s, a high-functioning form of autism. For the past 10 years, she has experienced the highs and lows of being on the autism spectrum while trying to work in professional settings.

It is not as though Still cannot get a job — in fact, her resume is full of them, ranging from room attendant at Yellowstone National Park to receptionist at a massage parlor. It’s keeping the jobs that has been the issue.

“Some days it is really hard to function … things like fluorescent lighting can even bring my systems down,” she said, meaning the lighting depresses her mood easily.

Still is not alone. The Centers for Disease Control and Prevention says as many as one in 50 children are diagnosed with autism spectrum disorders.

Many of those children will grow up and eventually try to enter the workforce.

Still said she’s had a range of job experiences. Her worst, she recalls, was working as a room attendant at Yellowstone National Park, because she had a hard time remembering her tasks. She has memory issues because of her Asperger’s, she said, and often loses track of time.

“It was really hard for me to remember how they wanted me to clean the rooms. They were really fast and I had an awful time keeping up,” she said. She only stayed at that job for two months.

I have Asperger’s; I am just like you

Ann Cameron Williams, chief research and innovations officer withThe Arc, a national organization of and for people with intellectual and related developmental disabilities, asks what will happen to those one in 50 children once they enter adulthood.

Should insurance cover autism therapy?

“How will these children impact our schools, our offices? It is something that we have to open our eyes to. It is something that we really have to embrace,” she said.

“We don’t have a choice of turning away — we have to employ these people.”

One of the main challenges The Arc faces is educating employers about the benefits of hiring those on the autism spectrum, according to Williams. She said some employers are hesitant because they are unfamiliar with how such workers will perform on the job.

“When it comes to questions from businesses, it is just communicating to them the facts. Giving someone with autism a chance to work, many employers will discover that those on the spectrum are great at working with numbers, computers and spreadsheets,” she explained.

I hired someone with Asperger’s — now what?

Besides advocating for those with autism disorders, The Arc and other national organizations have work-training and placement programs. One company that specializes in job placement for those on the spectrum is Nobis Works, a nonprofit organization based out of Georgia.

Becky Ketts, the director of rehabilitation services at Nobis Works, finds jobs for people on the autism spectrum while they go through the organization’s training program. These training programs last anywhere from three months to a year, and teach everything from anger management to customer service.

These “soft skills” are essential for success in the workplace, Ketts explains, especially for those with autism disorders.

“Even the thought of interviewing for a job can be overwhelming for someone on the autism spectrum. That is such an intimate setting. That alone can keep people from finding a job,” Ketts said.

Still can relate. “I don’t tell employers I have Asperger’s,” she said. She worries that employers will be immediately turned off from hiring her. “But I think when I do interviews I seem a bit strange and people don’t hire me.”

She also has difficulties “being social,” she said. It is those little things that ultimately build stress for her in the workplace.

Social interaction is a common challenge for those with autism disorders, Ketts said. “We all interact with so many people, co-workers, bosses, it can all be very overwhelming for those on the spectrum,” Ketts said.

Still said positive reinforcement was lacking in some of her previous jobs. “I had one boss who I would hear yell at other employees — that really affected me,” she said. “And sometimes, I feel people staring at me and it makes me uncomfortable.”

Ketts adds the key to overcoming those overwhelming feelings can be as simple as having a support system. A positive work environment and internal support can help increase retention rates at jobs for those on the spectrum. Nobis Works said it offers external support for individuals on the spectrum and reports an 84% retention rate, where employees stay longer than 90 days at their placement jobs.

“We can set someone up on the autism spectrum at a good job, but things can change. Keeping a job can be the hardest part,” Ketts said.

Music exercise class for adults with autism

More employers are becoming aware of the needs of people on the autism spectrum. There also are companies actively seeking to hire people on the spectrum. Aspiritech, a nonprofit Chicago-based company, launched a program to train high-functioning people on the autism spectrum to test software for tech development companies.

Even companies like Walgreens are taking a stand to hire more people on the spectrum. The company’s CEO announced in 2012 that it would try to fill 20% of its distribution center jobs with people of different disabilities.

Williams said companies are starting to see not only the business benefits of hiring someone on the spectrum, but also the ethical and public relations benefits. “It is hard to measure it with a dollar, but it is the right thing to do. When you have a company that is willing to hire someone with a disability, it’s a positive reflection on that company,” she said.

Karen Carlisle, vice president at Nobis Works, said the most important thing for employers to remember when hiring someone on the spectrum is that they are always going to have autism, no matter how much training a placement program provides for them.

“We don’t fix people with disabilities, we help people work with those disabilities and we work with managers and employers to help them understand these people,” she said.

“There is hope for people on the autism spectrum in terms of finding work.”

Still said she wishes employers would be aware that some people on the spectrum tend to be more sensitive. “And it may take us a bit more time to learn how to do something, but once we get it, we are very helpful. Many of us are dedicated to helping others, we just learn and show our dedication differently,” she said.

She said she hopes that if and when she does find a job she can start telling her employer about her needs with Asperger’s.

Despite not having a job since May 2012, Still said she isn’t discouraged. Ideally, she hopes to work with animals in the future and be out in nature. She said she’s hopeful because she knows she and others on the autism spectrum have a lot to offer.

“We are very intelligent,” she said. “We are very focused if we are doing something we love.” And that thought keeps her smiling.

http://www.cnn.com/2013/04/30/health/irpt-autism-in-the-workplace/index.html

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