The Boy Who Ran Away: In-Depth Look at Life and Death of Avonte Oquendo

The doctor told the mother not to worry, that the baby was only a little developmentally delayed. Some kids just do it on their own time, he said. So she brought him home and waited.

Vanessa Fontaine had the background, as a nurse and an experienced mother, to understand that something was different about Avonte. He was one year old and still not making eye contact. He’d started talking, saying “Mommy” and “Daddy,” but then just as suddenly he’d stopped saying anything at all. There were other symptoms, too. “He’d watch TV, but he wouldn’t play with toys,” she remembers. “He didn’t like any toy that I would buy him, no toy at all.”

Maryland Bill Focuses on DSP Wages

Such an important issue in every state. If your organization is not already a member of the American Network of Community Options and Resources, then you should be, as ANCOR's National Advocacy Campaign is focused on raising the professionalism and wages of all Direct Support Professionals.

Tony, Chucky and Barry live in a typical suburban house in a typical suburban neighborhood. They leave for work in the morning, and come home again at the end of the day.

In the evenings Tony usually relaxes in his favorite chair, the TV on in the background, while Barry watches Westerns in his room. Chucky either watches TV with Tony, or finds tasks to do around the house.

To lead these lives though, Tony, Chucky and Barry need help. “The guys”, as their support staff collectively refer to them, all have varying degrees of developmental disabilities.

They live in a group home paid for by the state.

Their “work” is a day program of individualized activities they attend with other people with developmental disabilities. And in their house they have Charlene Smith-Scott and Jared Knight-Hopkins, the support staff who help them with their daily functions.

How much to pay support staff like Smith-Scott and Knight-Hopkins is the subject of SB890, sponsored by Sen. Thomas Mac Middleton, head of the Finance Committee. The bill aims to ensure that the compensation for support staff always remains at least 50% above the minimum wage.

How to Think About the Real Autism Risk

A study published last week found that the brains of autistic children show abnormalities that are likely to have arisen before birth, which is consistent with a large body of previous evidence. Yet most media coverage focuses on vaccines, which do not cause autism and are given after birth. How can we help people separate real risks from false rumors?

CDC: 1 in 68 Children in U.S. Diagnosed with Autism Spectrum Disorder

One in 68 children in the United States have now been identified with an autism spectrum disorder, according to new Centers for Disease Control and Prevention numbers released Thursday.

The latest estimate is roughly 30 percent higher than the CDC's previous measure, released in 2012, which found that 1 in 88 children had autism, based on health and education records.

Study: Autism Begins In the Womb

The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.

Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, researchers report in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.

Don't Keep Sports Off Limits

Michael John Carley is the Founder of GRASP, and the author of "Asperger's From the Inside-Out" (Penguin/Perigee), "The Last Memoir of Asperger Syndrome" (TBD), and numerous articles. In 2000, he and one of his two sons were diagnosed with Asperger's Syndrome. 

When you grow up with any kind of developmental disability it means that you do not grow as everyone else does. Shut out of the rituals of your peers -- the "developmentally-appropriate" experiences others refer to -- you will grow in different, often unseen ways. We positive types like to mention that there are some areas where you might find yourself surprisingly ahead of your peers. But, as we all know, not only will the areas where we are behind get the most notice (as that is what others will more clearly see), being in any kind of minority makes life harder, not just "different."

For autism spectrum kids who are better able to navigate greater society, sports are one of those rituals. But unlike fellow proponents of "more athletics for spectrum kids," my concerns don't rest solely with the exercise benefit. In 10 years of running the world's largest membership organization for adults (GRASP), I saw inestimable damage because people had grown up terrified of competition. In some cases, with folks whose ages range from the 20s to the 80s, I even saw a commitment -- rather than a conditioning -- towards avoiding rivalry. They were so determined to avoid creating, or engaging in any kind of battle with their fellow humans that they wouldn't even utter the words, "I can do better," which, as we all know, is wherein we compete against ourselves.

NYS Lawmakers Seek Funds for Children

ALBANY — With the clock ticking on the budget due April 1, advocates and legislators called Monday for the final spending plan to include help for programs benefiting disabled children.
The providers says that since the state Health Department revamped the payment system that was formerly run by counties, payments from health insurance companies have been delayed for weeks and months. They want the state to take responsibility for billing and collection for services to kids with autism, developmental disabilities or other serious conditions diagnosed when they are small children.

Open Letter to Journalists on Eve of Autism Awareness Month

From Age of Autism's Media Editor Anne Dachel.

Dear Fellow Members of the Media: (That includes all of you at CBS, NBC, CNN, Forbes, New York Times, Chicago Trib, LA Times, et al.)

April is coming up and I wanted to say a few words about the month dedicated to autism awareness.  Many of us in the autism community are tired of stories about lighting the world up in blue and celebrating autism as if parents should be happy about a diagnosis.  We've endured years of feel-good coverage about awareness, fund-raising walks, and no explanation for the mystery of autism.  

Most of all, we want you to do your jobs. 

Filling Need for Dental Care

Back from vacation. Thanks to Samantha Link, our intern, for filling in.
Dennis Fitzpatrick had 17 cavities by the time he arrived at the Rutgers School of Dental Medicine's special care center seven years ago. Fitzpatrick, 27, who suffers from cerebral palsy, had regular checkups throughout childhood, but his dental decay had progressed so far, four of his teeth had to be removed.

Because of his disability, other dentists were nervous about treating Fitzpatrick. They couldn't accommodate his wheelchair, so he was placed in a dental chair, which failed to hold him securely. His difficulty communicating and the sounds he made during episodes of reflux prompted dentists to wonder if he was choking.

Lawmakers Urged to Fund Developmental Disability Services in Florida

TALLAHASSEE-- .Advocates for people with developmental disabilities Tuesday called on lawmakers to take advantage of Florida's improved economic outlook, slash a waiting list for services and raise hourly wages for caregivers.

The Florida Developmental Disabilities Council and The Arc of Florida said their legislative agenda includes supporting Gov. Rick Scott's budget recommendation of $20 million to reduce a waiting list for home- and community-based services under what is known as a Medicaid "waiver."

The thousands of people on the waiting list have different levels of need, but the Agency for Persons with Disabilities has identified people to serve as quickly as possible because of critical needs.

Experts say that Autism Training for Law Enforcement in NJ Often Leads to Better Outcomes

With statistics indicating that one of every 49 children born in New Jersey develops some form of autism, prosecutors say it’s inevitable that law enforcement officers will come in contact with someone with the neurological disorder.

Whether it’s a child who wandered off or an adult implicated in a crime, law enforcement officers need to learn the special techniques to handle a person with autism to prevent the escalation of what could potentially be a field of land mines in emergency situations, prosecutors say.

To familiarize emergency responders with those techniques, the County Prosecutors Association of New Jersey is holding a two-day statewide seminar prosecutors hope will go a long way toward changing how law enforcement officers deal with people with autism.

Down Syndrome: A Year of Grief and Joy From ABC NEWS

In one week from today it will be one year since I decided to become the mother of a child with Down syndrome.

It was March 21, 2013 –- World Down Syndrome Awareness Day. But I didn't know that. All I knew was I was 15 weeks pregnant, lying on a table, having an ultrasound and waiting for the tech to tell me what else was “wrong” with my baby.

Girl with Cerebral Palsy Learns to Walk with the Help of a Horse

            

PORTLAND- Four-year-old Abigail Fantz giggles and her curls bounce as she stands straight up on a moving horse. She's held in place by a team of adults, but she's not practicing a circus trick - she is in a unique therapy called hippotherapy (hippo is Greek for horse).

 

Abigail has cerebral palsy and can't walk without a walker, but standing, kneeling, and sitting on a pony named Pippin is strengthening her trunk and her left side. Eventually, she'll be able to sit up and stand up straight and eventually walk all on her own.

At Last, Hope in Colorado for Those on Adult Support Lists

Beautifully written and sensitive piece by Jeremy P. Meyer, Denver Post Editorial Writer who is also a parent of a child with Down syndrome. It's clear that he understands the issues and lives with them. Wish there were more journalists who could connect with our field and the importance of services. 

DENVER -- Angela DeBruyn didn't think she would have a problem seven years ago when she put her 14-year-old daughter Anna on a wait list for adult support services.

Anna, who has Down syndrome, cannot be left alone for long periods. She can't take a bus by herself, cannot make herself a meal or go anywhere unattended.Anna is now 21 and still on the wait list. She ages out of a day program for people through 21 this summer and her mother doesn't know what she will do.

Making a Birthday Wish Come True

PITTSBURGH

— 

A local mother is trying to make her 8-year-old son’s upcoming birthday one he’ll never forget.

Ange Dellavecchio said her son, A.J. Greene, who lives with autism, has developed a huge fascination with clocks.
“I like the color about it,” A.J. said as he showed off one of his clocks.

Effort to Boost Investment in Autism

The leading autism nonprofit and Google have teamed in an attempt to link private investors like venture capital, private equity and even hedge funds to inject innovative autism-related business development.Thanks to increased awareness and diagnosis of autism, it's now known that one in every 88 American children is born with some level of the disorder. That's more than those affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome—combined.

Advocates: New Jersey Medicaid Expansion Leaves Unmet Needs

In what he called an “era of fiscal restraint,” Gov. Chris Christie wants to increase state spending for New Jersey’s expanded Medicaid program by $254 million next year.The governor’s proposed Medicaid spending includes an additional $100 million to place people with developmental disabilities or mental health issues in less restrictive community settings, and a $125 million increase for assistive services to keep older adults out of nursing homes.The governor also is urging the state’s medical research institutions to find new ways to improve health care delivery and control rising expenses.