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.