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
Click this link to view the associated video:
JOHNS CREEK, Ga. — A puppy, thrown away and left for dead on the side of a DeKalb County street, almost starved to death.
Seven months later, she is living up to the name her rescuers gave her — Xena the Warrior Puppy.
She is alive, well, and working miracles for all in her life.
One miracle is that Xena survived the abuse.
Another is what she is now doing for other abused animals.
This just might be a match made in heaven.
Tuesday afternoon, Xena the Warrior Puppy was running around the yard of her new home in Johns Creek with her new best friend, Jonny Hickey.
How far they’ve both come. Together.
In September, Xena was near death, a victim of severe neglect.
The rescue group “Friends of DeKalb Animals” found Xena and somehow was able to nurse her back to health.
At a fundraiser in November, 11Alive News shot some video of Xena, wagging her tail, nuzzling up to the people around her, healthier and stronger. Xena’s miraculous recovery had made her an international Facebook sensation, and she was raising tens of thousands of dollars for the care of other abused animals.
And at that fundraiser in November, Xena ran straight to two people she didn’t know, a little boy and his dad, and “introduced” herself.
The news camera caught a glimpse of it, the photographer not knowing, then, that the father and son Xena was greeting was Jonny and his dad.
Jonny’s autism had made him withdrawn, reluctant to speak and interact with others.
He fell in love with Xena.
And she fell in love with him.
And in late March, with Xena fully recovered and ready for adoption, she moved in with Jonny and his family.
The two became inseparable.
Suddenly Jonny is a chatterbox.
And he wanted his mom, Linda Hickey, to make a YouTube video of him telling the world about the month of April — how did Jonny know it is “autism awareness” month, and it is also “prevention of cruelty to animals” month?
“My name is Jonny,” he says on the video, “and this is my puppy, Xena. Well, my Xena was hurt really bad. By some not-so-nice people. And I have autism. So I think we make a pretty perfect team to spread the word to be nice to animals, and nice to kids like me.”
How far they’ve come, together. A match made in heaven.
On April 21, Friends of DeKalb Animals is holding another fundraiser, at Fleur’tee Bee Boutique, 1440 Dutch Valley Place, NE, in Atlanta, from 2pm to 5pm. Xena will be there, one of the stars of the event’s “kissing booth.”
Lynn Herron of Friends of DeKalb Animals told 11Alive News Tuesday that Xena, and her story of heartbreaking, near-fatal suffering, and her recovery, have drawn attention to the work of her organization rescuiing abused, abandoned and neglected animals. Herron said people who have followed Xena’s Facebook page have donated about $30,000, so far, which has made it possible for Herron to establish the Xena Shelter Fund for the most severely abused and injured animals, like Xena was.
Herron said DeKalb County Police have not yet been able to find out who abused Xena, but the case remains open, with a reward of $2,500 to anyone who helps lead police to the abuser:
It had been a very good week off; a time to recharge, spend time together as a family and appreciate what that means: being together, re-connecting, and appreciate that times can change quickly and drastically. The new pup has changed our sleep/wake patterns and we’re still getting used to that. In a matter of months, Nick will be in college; hopefully he’ll have some kind of part-time job before then (LOL!), so our day-to-day family dynamic will definitely change. Birthdays, concerts and baseball games are coming now that Spring has finally arrived.
I guess I tend to take for granted the support each of us has provided to each other; understanding what it’s like to be part of a family affected by Autism is one thing; it is quite another to walk in our shoes. Just simple acts of empathy, and understanding the stress levels that Autism tends to put families under are tremendously helpful. Actually learning about Autism (and other related developmental disabilities) and offering help when it seems to be needed are true gifts; to that end I am extremely proud of my older sons, who so often ‘step up’ for their little brother, and each other. Imagine someone offering you a brief respite, a moment to sit and have a quick, undisturbed cup of coffee or offering to watch your special needs child for a few minutes is like manna from heaven.
Our vacation, as usual, came to an abrupt and jarring end after an Easter get-together. The setting is a family gathering in the home of a young child who is (at least) developmentally delayed and likely a nonverbal autistic. He is a whirlwind of activity and impulsivity. My kids played with his siblings and other cousins, allowing his parents to tag-team without the distraction of worrying about their other kids. While he does have quiet moments (he let me stroke his hair while he lay next to me on the sofa), these are usually short-lived, especially when it’s late in the day and he’s tired. Then he jets off to another room, or activity, or just needs to get up and keep moving.
I was appalled to hear a relative say, “I know this sounds mean but can’t we strap him down to a chair?” Let’s be clear here: this is not the first visit she’s had to her nephew’s home. He wasn’t particularly agitated, certainly not violent. Actually quite redirectable. So after cocking my head askew and imperceptibly shaking my head, I (and others in the room) answered 1. how inappropriate that is, and 2. how futile it would be, reiterating how this boy had earned his nickname ‘Houdini’.
Then comes, “couldn’t they put him in a room with nothing in it?” I bit my lip before answering, “this is his home, this is where he should feel at home.”
I did not bother to go into awareness issues. I did not bother to explain just how wrong those two questions were, on so many levels. Autism and developmental disabilities have been part of our extended family landscape for over a decade. Everyone was witness to how difficult family gatherings in homes and restaurants, were. How much of a toll in terms of stress and anger and lack of support there was after we found out our son Mike was autistic. After learning that our nephew was also developmentally delayed, I remember my sister-in-law telling my wife ‘now I know what you were going through’ (or something similarly empathetic). Vindication? No. Understanding, yes.
I can’t pummel people about the head repeatedly to change how they view Autism, and its alarming rise in the United States. I can’t change people who don’t want to change. I can’t change how people interact with their own family members. I can’t make people advocate for a cause they don’t want to understand. I don’t wish they knew what it would be like to raise a Autistic child, because that would be one more child who needs to be championed. I can’t ever describe how it feels to see how my Autistic child makes small progressions, and how that has helped me appreciate his two older brothers that much more for their successes. I can’t teach them how to be ‘other-centric’.
I can feel sorry for them, for they lack basic human kindness. They can’t help it; they were born that way.
As many of you who read this blog know, I work in a state-run residential facility for developmentally delayed adults. Some of those adults are strictly mentally retarded (MR) while others have mixed diagnoses; all have MR, but some may also have autism, and others may have psychiatric diagnoses as well. I attended a exit conference for one individual, an adult diagnosed with Mild MR and autism, who is generally regarded as high functioning. He has no legal guardian and in fact, successfully argued (with the aid of staff psychologists and his appointed mental health attorney) in family court to prevent a family member from becoming his guardian. Despite that, his family remains quite involved in his care and has been on the forefront of getting him placed “in the community” closer to one family member’s home; he is quite independent and this would be situated such that he could visit with his family far more frequently. He was, in fact, accepted into the group home; the exit conference was a formality only.
Quite suddenly, the individual began displaying anxiety; his speech pattern became more rapid and repetitive, almost echolalic, with an increase in volume from normal conversational tone to near-screaming. He brought up many undesired behaviors he had exhibited in the past, and vowed to do them all over again; he sabotaged his own placement. While this was difficult to watch, it was not totally unexpected. This individual had, in fact ‘sabotaged’ a community placement opportunity a few years ago by the exact same means. A family member who was present at the meeting became exasperated. His clinical team tried in vain to slow down the verbal train which was speeding towards a fiery crash; an impasse if they were lucky. The group home staff, who likely had been made aware that these behaviors would resurface, tried to ‘talk him down’, but to no avail.
What’s at issue here? As many parents on the Spectrum know, anxiety is that demon that often undermines the best of plans and the best of intentions. Anxiety is that monster in the closet that hides until rearing its ugly head in the middle of the night, waking everyone in the household with irrational fears. Is it treatable? Of course. Imagine this for moment though: someone tells you (yes, you, not your autistic child) to take a pill to change your mood. You are an adult who functions fully without any help, and frankly has no desire to change your mood; you feel there is nothing wrong with your mood. And frankly speaking, who the hell are you to tell me what to take; I am an adult and can make my own decisions about my health.
All valid points; points that can be made by both the neurotypical and autistic individual. As advocates for those with autism, we would likely applaud this rationale, this particular response, as one that displays self-awareness and self-esteem. As advocates we also have the ability to access others’ wisdom and expertise in order to plan long-term, despite short-term fears. As someone who had no legal guardian, this individual has all the rights and privileges that other (neurotypical) adults enjoy. He can live wherever he chooses, even if that choice is one that others would consider a poor one. He can also refuse to take any medications despite its benefits. A mild anxiolytic might have been helpful in this instance. Weeks ago I had suggested to the family member that he might want to consider offering this individual an herbal supplement or beverage (Vitamin Water makes one) aimed at reducing anxiety/producing a calming effect, just for this exact circumstance.
What did this teach me, as a parent of an autistic child? It reinforced the need to do many of those things we don’t even want to think about, put on the back burner, but nonetheless need to be addressed: having a will, establishing a special needs trust, petitioning for guardianship, and applying for Medicaid and/or Social Security benefits. I know, why do those now? They don’t all need to be done at the same time but they all need to be done by the time they reach age 18. And, in the case of the guardianship process, this is a long and circuitous process that is designed to wear you down and discourage you. My advice would be hire a special needs attorney who will help you formulate a plan to tackle one item at a time. Then just keep moving forward.
We all want to be there to see our children grow to be successful members of society. We don’t want them to fall into situations that they can’t handle, or shouldn’t handle, on their own. We want them to be able to handle their futures with as little anxiety as possible.