by Joseph Erbentraut, via The Huffington Post
When Atlanta-based attorney Shannon Nash and her husband first received the news that their 18-month-old son, Jason, was autistic, they felt overwhelmed and devastated.
The outlook for Jason painted by doctors and therapists alike was, Nash says, “a very bleak outcome in terms of what his future could be. Very, very bleak.” Her expectations, she says, were set very low when it came to what her son would be able to accomplish.
“Thank God they were wrong and that they just didn’t know,” she told The Huffington Post.
Now, Nash’s son is 16 years old. Though he will likely need to continue speech therapy for the rest of his life and has other struggles, he has made a lot of progress. His receptive language, she says, is excellent and she is currently considering sending him to a Minnesota-based program where he could earn an associate degree that will be of good use when he enters the workforce as an adult. It’s something she never would have anticipated when they first got the diagnosis.
Shannon Nash with her son Jason, who helped inspire her to launch Autism Job Board, a new website for job seekers with autism spectrum disorder.
The time after high school, however, is when the obstacles typically heighten for youth with autism spectrum disorders (ASDs). Though the Centers for Disease Control and Prevention estimates that one in 68 U.S. children now have ASDs — a marked increase from the time Jason was diagnosed — employment opportunities for those children when they become adults (an estimated 500,000 will do so within the next decade in the U.S.) are frustratingly few.
According to a 2012 study from Washington University in St. Louis, just 55 percent of young adults with autism had a job over the course of the six years immediately following high school. And the chance of being unemployed or not continuing their education is more than 50 percent greater for young adults with autism compared to their peers with other disabilities. Their combined unemployment and underemployment rate is estimated at 90 percent nationwide.
Alarmed by those statistics, Nash began researching employment opportunities for youth with autism several years ago. Though she found helpful resources from advocacy groups like Autism Speaks on resume-writing and other job-seeking skills, what she couldn’t find was anything specifically bringing together applicants with autism and the employers willing and able to hire them.
“I thought surely my search terms were off or there was something wrong with me, but the more I looked, I found very little,” Nash told HuffPost.
Tired of hunting down something she was convinced already should have existed, she decided to do it herself. A serendipitous run-in with an employee of jobBoardASP — a company that specializes in building job board websites — helped her get a handle on the backend of such a website, while she focused on making connections with other organizations working on the issue. That work culminated recently in the website,Autism Job Board, being launched at the AutismOne conference in Rosemont, Illinois.
In addition to searchable job postings, the website will also feature information for employers on best practices for hiring and employing workers with ASDs, as well as tips and help for applicants. Registration is free.
The response thus far, Nash says, has been positive, though employers have been slow to take to the site. So far, just one job posting — for prep cook positions at a restaurant in Denver — can be found. Nash is currently focusing on ramping up efforts to urge more people — employers and job seekers alike — to sign up.
The effort is very personal for Nash, who has seen her son flourish as he’s volunteered with the veterinarian’s office where they take their family dog. Not long after Nash first asked the office if Jason could work there three or four hours a week, they were asking her to stay home and send her son on his own — for fear that her presence could actually hinder his progress.
“He loves it and I see a future for him there,” she said.
Nash hopes many others like her son will also be given the opportunity to excel in workplaces, gaining valuable experience they can build on as they get older. Though she believes there is a misconception among some employers that hiring a worker with autism will be more risk and liability than it is worth, she’s found the opposite to be true.
An organization called Actors for Autism is behind an innovative program based in Glendale, California, the Advanced Media Vocational Academy. The program offers training in several areas of the entertainment industry, including some areas that Nash says workers with autism are particularly well-suited for, such as film editing — a time-consuming, solitary process that many with autism might enjoy. The program is also involved in job placement. Other autism career programs in Plano, Texas, and Chicago offer similar training catering to other industries.
Beyond pushing for higher registration on the website, Nash hopes the Autism Job Board will eventually offer job fairs held throughout the country in order to bring together job seekers and local businesses with positions to fill in person. She is optimistic the employment outlook will improve for people like her son — though it may take some time.
“We want to educate people and make them understand this is a workforce to really get behind,” Nash said, “and I can tell you it’s going to happen because it’s too many kids aging into adulthood.”
Sorry for not posting anything for a long time. Besides being swamped with work (for a residential facility hellbent on moving institutionalized individuals into the community; will get into this in another post), they updated their network servers which now block my ability to blog at work (the nerve, right??). It winds up being easier to post to the Beyond Autism Awareness Facebook page , or tweet links and stories on Twitter. Like the rest of you, I am usually too busy or tired after work to post anything of value, or more likely than not, life in general just gets in the way. But that’s commonplace for families on the Spectrum, so I know you understand.
Sooo, what’s new on this end? Well just a few things, really. Mike continued to learn new things in his Computer class given by the Nassau County PAL Special Needs Unit, and is continuing to make progress in school. He had a successful season with his Farmingdale Splash friends that culminated in winning 2 medals at a Special Olympics swim meet. He was really proud of himself, and of course, so were we.
He also had 2 of his drawings featured at the Long Island Children’s Museum, alongside some of his peers.
Last but not least, he wrote a short biographical piece that will be featured on The Golden Hat Foundation’s Blog page.
All in all, it’s been a really hectic year so far, and I hope it continues; every step regardless of how small is always a step forward.
Peace to you all. -Ed
Scott Brown is in his senior year at SUNY Purchase studying Psychology. His area of interest is Autism and for his senior project he created a survey along with his faculty mentor (see description below). If you have a child diagnosed with Autism, Asperger’s, PDD-NOS, or another diagnosis on the Autism Spectrum, would you please take the time to fill out this survey. Scott hopes to present his findings at a senior presentation in addition to graduating with his Bachelor’s degree on May 16! Please forward to any other parents, guardians or caregivers you may know that would be willing to participate. It is much appreciated.
The following link is for a research study investigating Coping Strategies and Advocacy in parents of children with Autism. The survey will take about 10 minutes and it is our hope that the data will contribute to the research on Adaptive Coping Strategies for parents of children with Autism. Upon completion of the survey, please feel free to forward the link to any other parent who may be willing to fill out the survey. Thank you for your participation.
Billy Nacmias weighs in at 168 pounds today (left) since checking into Center for Discovery in the Catskills at 280 pounds (right).
There could be no better Christmas gift than watching your son’s life be saved.
But Jack had been used to having his own home wrecked.
He lived with his autistic teenage son, Billy, who had grown up as a mild-mannered boy lost in the bewildering maze of his affliction.
But as Billy reached full-muscled puberty, he was beaten by a teacher in now-defunct Beach Channel High School. Billy’s reaction was to eat uncontrollably until he hit 280 pounds. His anger grew in scary proportion.
“Some days, Billy would just suddenly go berserk and destroy the whole house,” Nacmias said. “The cops would have to come to restrain him. My wife and I would clean up the mess and weep. Not for ourselves. For him. For Billy. We didn’t know how to help him.”
Jack and his wife, Jane, loved Billy as much as their other kids, James and Danielle. But Billy had reached an age when keeping him at home was counterproductive to everyone’s quality of life — especially his own.
The Nacmiases sued the city.
As part of the settlement, the city offered to let them pick an institution of their choosing to try to rectify the harm done to Billy. The Nacmiases searched for the right place, where experts might rechannel Billy’s rage.
A few days after Thanksgiving, I stopped by the Nacmias and Son Sunoco station on Coney Island Ave. for my six-month tuneup. The usually jaded Jack Nacmias was a bouquet of smiles. I asked for the same high-octane gas he was on.
Billy Nacmias as Scrooge in ‘A Christmas Carol,’ a role which contributed to the discipline that led to his dramatic weight loss.
“I believe in miracles,” he said. “My son Billy has been saved.”
Nacmias started talking as fast as a tobacco auctioneer. Billy had been placed in the Center for Discovery in the Catskills. He said professionals there had transformed his overweight, unhappy, often violent son into a trim, joyful and productive young man.
Jack whipped out remarkable before-and-after photos.
“When we visited him, Billy rushed out and hugged us and proudly showed us the house he shared with four other kids on this 1,000- acre paradise,” Jack said. “There’s a full-time nurse, all kinds of dedicated counselors, and he works with egg production in the henhouse, with horses and sheep. He dropped from 280 pounds to 168 pounds, and he’s the trail leader on team hikes. He’s also studying drama to play Scrooge in ‘A Christmas Carol.’ ”
Jack is a grizzled Brooklyn grease monkey, not prone to sappy displays of emotion. But as he talked about his son, he wiped a damp eye. “On Thanksgiving, we took Billy to my cousin’s house and he ate with perfect table manners, using a knife and fork,” Jack says. “Billy ate responsibly, and when he was done, he asked if he could be excused.”
Billy Nacmias found a passion for the stage — among other things — at the Center for Discovery in the Catskills.
Nacmias said the Center for Discovery is equipped with state-of-the-art technology and programs for autistic kids like Billy.
“The Center for Discovery uses a holistic approach,” says spokesman Loren Riegelhaupt. “All the food the students eat here is organic, farm fresh. They also work. As they lose weight and detoxify from chemical additives, they tend to calm down and sleep much, much better and act out less. They also can focus and learn more. In his 18 months here, Billy has gone through an astounding transformation. We’re thrilled with his success.”
Nacmias is thrilled, too.
“Listen, I use tools, parts, and labor to make a car run,” he says. “But these people have tools and counselors to perform human miracles. They have given my son Billy a life and given my family more happiness than you could ever know.”
The only sad part of the story is that Billy will soon reach the age of 21, when he must transfer out of the center.
“But his progress has been so remarkable that the counselors are trying to see if they can actually hire him to work with new kids like he was when he first arrived,” his dad says. “If they can, he’ll have his place in life.”
On Wednesday, Jack and his family drove up to see Billy in “A Christmas Carol.”
“I’m a Jew,” said Jack. “But here’s my son Billy, who used to wreck the house, memorizing lines and performing in the greatest Christmas story ever written. When I saw him playing Scrooge on stage, I was in tears with pride. It was the greatest gift our family has ever received. Billy has found meaning in life. Now I understand what Tiny Tim means when he says, ‘God bless us, everyone.’ ”
As if any of us needed reminders of why we do what we do, and do so without batting an eyelash…
A Walk in My Shoes
C. Waeltermann, 2007
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift?
The right color and style?
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent..”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
But what they don’t know
And what they don’t see
Is the joy that we feel
He said “hello”!
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty!
Who cares if he’s ten;
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you…
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned.
- Santa greets children with autism in Virginia Beach (hamptonroads.com)
THE DAY MY SON WENT MISSING
Wandering Is A Major Concern For Parents Of Children With Autism
By LORI McILWAIN, via NYTimes.com
NOW in its sixth week, the search for Avonte Oquendo, a 14-year-old boy from Queens with autism, is shining a light on the issue of wandering among people with autism. On Oct. 4, Avonte managed to slip away after lunch from his school in Long Island City — even though he was known to wander during classroom transitions.
While most people associate wandering with elderly sufferers from Alzheimer’s or other types of dementia, a recent study published in the journal Pediatrics found that 49 percent of children with autism were prone to the behavior. Given the prevalence of autism — at one in 88 children, or one in 50 school-age children — it’s clear this is an everyday concern for many thousands of parents.
The day Avonte went missing, a Friday, a 12-year-old boy with autism was in a medically induced coma in Oakland, Calif. According to reports, he had wandered from his mother in a parking lot and entered eastbound traffic on I-580, where he was struck by at least one vehicle. By Sunday, another child with autism had gone missing: 5-year-old Devonte Dye wandered from his grandparents’ home in southeast Missouri. Tragically, he was found the next day, drowned, in a slough near the St. Francis River.
Since 2011, 41 American children with autism have died after wandering, or “bolting,” from caregivers. Water is often a fatal draw for these children. Since April of this year, 14 out of 16 deaths were from drowning.
Even as a campaigner, I did not appreciate the full magnitude of the issue until my own child went missing in 2007. Connor was 7 years old when he left his schoolyard, unnoticed, through an unlocked gate and made his way toward a four-lane highway.
Many children with autism have particular fascinations, and Connor’s is with highway exit signs. For our family, driving up and down the interstate was a fun day out. We never suspected he’d attempt to get there on foot.
Luckily, a passing driver noticed our son; the driver turned around, just in case. When Connor failed to answer a few basic questions, he was taken to another nearby school. That school called the police. The police had no idea how to deal with Connor: An officer mistook our mostly nonverbal child for a defiant rule-breaker who needed some “tough love.”
Finally, a staff member at the school reached me, but exactly how long Connor had been missing by the time I got to him, no one could tell me. Connor was hysterical, shaking. I scooped him up in a hug, whispering through my own tears, “You’re O.K.”
That was our big wake-up call, but it didn’t end there. Connor’s wandering had started in day care and continued through school. He slipped out during classroom transitions, as Avonte did. We found ourselves keeping Connor home on days we feared it might be easier for him to slip away. Here I was, an advocate for others, yet I could not keep my own child safe.
Today, the National Autism Association, where I work, provides information and resources for caregivers. Back then, there were no fact sheets to support our pleas for greater vigilance. And, to this day, there is no guidance from the Department of Education; no protocols, not even a mandate to notify parents of any wandering attempts. At the N.A.A., we often hear from parents who have a child who cannot sleep, forcing caregivers to barricade doors and take shifts staying awake. Others are so desperate that they hide their child’s shoes to slow them down in case they escape.
Under federal criteria, which most states follow, the Amber Alert system can be used only for children known to have been abducted. Wandering doesn’t count. Instead, the refrain most often thrown at parents is simply “watch your child better,” or “find a school that will watch your child better.”
Imagine if that were the advice given to those who care for Alzheimer’s patients. In fact, the Department of Justice provides about $1 million a year for first-responder training on Alzheimer’s-related wandering and tracking technology. There is no equivalent funding for autism-specific wandering and no more than a promise, in 2011, from Kathleen Sebelius, the secretary of health and human services, to give the issue “serious consideration.”
If consideration had become action, perhaps Avonte would be home safe right now. There is still a lack of awareness in schools. Simply to provide better teacher training on wandering would help prevent future disappearances.
So where is the federal autism program on wandering prevention? Yes, budgets are tight, but here is our choice: We can spend the money now on awareness and training, or later, on huge, intensive searches for missing children.
Now 13, my son wears a tracking device, and is learning ways to keep himself safe. In his room are miniature replicas of his favorite exit signs, and a laptop, which he uses to draw them whenever he likes. He hasn’t attempted to reach the highway since getting the laptop. He’s also at middle school now, cared for by an amazing staff. While Connor still has phobias that can make bolting behaviors difficult to prevent, we finally have the resources to help keep him safe.
But not nearly enough is being done to keep children like Avonte from disappearing. Too many parents are still going through the anguish of losing their wandering children.
- Chuck Schumer Calls for GPS Tracking of Autistic Children… (breitbart.com)
- NYC Missing Boy Stirs Fears For Special-Ed Parents (huffingtonpost.com)