Opinion: Need to Fill Service Gaps for Young Adults with Autism

An important read by Valerie Paradiz, Executive Director, Autistic Global Initiative, on the importance of measuring outcomes as our field evolves. She has presented at YAI's conference in the past. We need to ensure there's a better transition for young adults and it needs to start earlier.

I am the mother of Elijah, a 25-year-old young man on the autism spectrum. When he received his diagnosis at age 4, following two years of terrifying seizures, I was teaching German literature at Bard College in New York. I loved being a professor, but when Elijah’s struggles began to have a greater impact on his and my daily life, I chose to switch careers and concentrate on education and advocacy — for him, and also for other children with autism.

During Elijah’s time in school, I saw gaps in knowledge and help for those on the spectrum. Although my focus at the time was on children, the lack of services has persisted, undermining a whole generation of youth with autism through their school years and into young adulthood.This topic is of urgent importance: An estimated half million young Americans with autism will make the transition to adulthood over the next decade. A report released in April captures the story of this overlooked generation in hard numbers.

U.S. Unprepared for 'Autism Tsunami' as Children Transition to Adults Services

Autism is on the rise: More than 1.5 million people have the condition in the United States alone. But because the majority of these people are younger than 22, the country is on the verge of an “autism tsunami” that could leave thousands without the support they need as they become adults, according to Autism Speaks, an autism advocacy organization. 

“The current system we have right now is woefully inadequate,” says Angela Lello, director of housing and community living at Autism Speaks. "There are lots of long waiting lists. In some states, it can take as long as 10 years to gain access to [these support] services."  

Preparing Special Ed Students for Jobs

JORDAN, Minn. — Each student needs to prepare for life after high school while still sitting in class before graduation day.

Every high school student needs to think about pursing a higher education or be ready to enter the workforce with necessary skills that match jobs in technical or service industries.

Special education teacher Vanessa Bigaouette teaches a Transitions class at Jordan High School that prepares juniors and seniors for life after high school. The curriculum covers subjects like planning for post-secondary education or training, employment and independent living.

Bill To Help Ease Transition at Age 22

BOSTON — With the right services, autism advocates say people with developmental disabilities can work and live independently.  But instead, they say, many of them are cut off from special education when they turn 22 and do not qualify for adult services they need from the state’s Department of Developmental Services.
“We have many children who are sitting at home, watching TV, playing on the computer, don’t have access to a day program,” said Barbara L’Italien, spokesperson for The Arc Massachusetts.

Defying the Odds with a Job

LAWRENCE, Kan.  — Lawrence man Ryan Banning is in every sense of the word an entrepreneur. For more than a decade, Banning, 36, has operated his own business, Ryan's Vending Service, managing a dozen or so vending machines in Lawrence.

He's always looking to expand, he said as he loaded the soda and snack machines at the Lawrence Municipal Airport recently.

And the bottom line for Ryan, who has Down syndrome, is that he enjoys the work and turns a profit.

Latino Families Brace for Future of Their Young Adult Children with Autism

Kudos to NBC Latino for exploring this topic and its impact on families. Be sure to watch the video.

In a recent study published online in Pediatrics, researchers found that more than half of young adults with autism had no job or schooling within two years of graduating high school. Are America’s Hispanic families and communities prepared to help serve this generation?As part of a special project with Telemundo, NBCLatino.com hopes to explore this topic more deeply by talking with families who are living with these challenges.
We begin with the story of southern California’s Ana DaSilva and her family of 5.  Eighteen-year-old Andy DaSilva has autism and is about to graduate high school.  Anna is worried about Andy’s transition into college.  He wants to become a  chef or maybe an animator someday.

Hurricane Autism Has Made Landfall

From our friends at the Age of Autism. Something we've been talking about for years . . . autism isn't just about children; there are thousands of adults on the spectrum.

Looking back over the last several weeks I’ve noticed a steadily increasing trend in the news — more and more stories are coming around the country talking about the aging out ofthe autism generation.  It’s not surprising that this isn’t a cause for alarm.  Mounting numbers of children with autism have been calmly accepted for the last several decades by doctors, health officials, and the media.  And of course, children grow up, so this is only to be expected

Transition Time for Teens with Autism

Now that an autism diagnosis is 10 times more common than it was in the 1980s, more children than ever before are undergoing effective early interventions and treatment plans. However, one aspect of the disorder that has yet to garner attention is the scarcity of support for young adults transitioning out of high school and into adulthood.
“There is a severe lack of knowledge for educators and parents regarding available options after the public K-12 system,” says Rodger Stein, M.A., an instructor at UC Davis Extension and professor of psychology with the Los Rios Community College District who specializes in behavior supports for youth with high-functioning autism or Asperger syndrome. “We have to get to the point where our students are the ones driving their own transitions based on their own futures.”

Autistic and Seeking a Place in Adult World

MONTCLAIR, N.J. — For weeks, Justin Canha, a high school student with autism, a love of cartoons and a gift for drawing, had rehearsed for the job interview at a local animation studio.
As planned, he arrived that morning with a portfolio of his comic strips and charcoal sketches, some of which were sold through a Chelsea gallery. Kate Stanton-Paule, the teacher who had set up the meeting, accompanied him. But his first words upon entering the office were, like most things involving Justin, not in the script.
“Hello, everybody,” he announced, loud enough to be heard behind the company president’s door. “This is going to be my new job, and you are going to be my new friends.”
As the employees exchanged nervous glances that morning in January 2010, Ms. Stanton-Paule, the coordinator of a new kind of “transition to adulthood” program for special education students at Montclair High School, wondered if they were all in over their heads.

Parents Sue Philadelphia School District

PHILADELPHIA -- Four parents have filed a class-action lawsuit on behalf of their autistic children, alleging that the Philadelphia School District is illegally moving the children from school to school based solely on their disability.
At issue is the district's Automatic Autism Transfer Policy, which mandates that students with autism move to another school at the end of third and fifth grades. Non-autistic students do not have to move.

Program Helps Transition to College Living

SCOTSDALE, Ariz. -- A new summer program for young people with Asperger's syndrome and high-functioning autism will prepare them for the social intricacies of college.
The Scottsdale-based Spectrum College Transition Program helps people who have developmental disorders navigate college life during the academic year. Typically, Spectrum offers additional academics during the summer.
But O. Robin Sweet, co-founder of Spectrum, said she discovered that her clients don't really need the academic help.
"Our students excel academically," she said.
"Their issue is the social component."

Autism's Challenges After Graduation

SCARBOROUGH, Maine -- David Bouchard is, without a doubt, looking forward to graduating from high school next month.
He says so with wide eyes and a big smile even before he types Y-E-S on his DynaVox, a hand-held communication device tethered to his belt.
Debbie Bouchard, on the other hand, is starting to dread the end of her son's public school career. After years of special education programs to prepare the Arundel man for work and life in the community, David Bouchard -- and other young adults with autism across the state -- may have nowhere to go but home.
The generation of children who experienced the first wave of an ongoing autism epidemic is now reaching adulthood. Public support programs that used to provide continuing education and care for virtually all adults with development disabilities now have hundreds of Mainers are on waiting lists that are expected to keep growing.

Turning 22 and Facing the Next Step

YORKVILLE, Ill. -- Seth Harbin, who has Down syndrome, turned 22 last month. Because the Illinois public school system provides special education for those with developmental disabilities only until their 22nd birthdays, that means Seth is no longer able to attend Yorkville High School, where he has been a student for seven years.
"Seth is very social," said his mom, Patty Harbin. "There's no way I'd want him sitting at home watching TV all day."
Because Seth's daily routine will no longer include going to school, according to Patty, having either paid employment or a volunteer position is crucial so that he will have a purpose each day.

Who Will Care for Dana?

Nice job by Parade magazine for highlighting the issue of young adults with autism who are aging out of education services at 21. Transitioning from a system of "entitlement" (such as guaranteed education for children with special needs)to a system of "eligibility" (adult services, including day and employment programs) is a major struggle for so many families and an issue that certainly deserves more media attention.

In many ways, Dana Eisman, 20, of Potomac, Md., is like any other young adult. She rocks out to Train, adores Glee, and eats pizza every week. And this June, like many of her peers, she’ll leave school and join the real world.
But for Dana—and her parents, Beth, who works in a doctor's office, and Rob, a business owner—that prospect is terrifying. "I want to celebrate," Beth says, "but what I feel is a knife in my heart."
That's because Dana is autistic. She can't hold a conversation, make eye contact, verbalize her thoughts, cross the street alone, or control herself when she's upset. Starting when she was 4—thanks to a federal law that guarantees disabled children an appropriate education—she has spent her weekdays at Ivymount, a private school for special-needs students that she loves and that has been paid for by the state and county. But because Dana turns 21 this week, that support will dry up when the school year ends, leaving her parents to agonize about the quality of life their daughter is facing.

Parents Protest Privatization of Group Homes

Staff turnover can be extremely difficult on people with developmental disabilities and their families. Starting from scratch and establishing trust takes time. Surprised we haven't heard more of this going on. Unfortunately, it probably is just the beginning of things to come.

TRUMBULL, Conn. -- Since 1997, Marge Keane's stepson, Brian, has lived at a state-run group home for people with developmental disabilities. Time was, she said, when the 47-year-old's behavioral issues meant that he often had to be restrained.
But with the same staff of caregivers regularly on duty at the home, that's no longer the case, Keane said. She fears, however, that her stepson's behavior will regress when the group home's management is turned over to a private firm.
According to Joan C. Barnish, a spokesman for the state Department of Developmental Services, 17 state-run group homes will be turned over to private management because of the recent retirement-incentive program offered to state employees. She said 395 DDS employees took advantage of the program and of that number, 162 workers provided direct support and service in group homes. Those 162 jobs will not be permanently filled, Barnish said, so the department feels the privatization is the best option to provide care.