Newsweek has a lead article on autism when they grow up
I will include the link to the whole article on the bottom but I wanted to post a few exerpts that hit home and sound as if I helped write the article. They are things I have been talking about to anyone who will listen for years
so here ya go-- if you are really interested the link will be at the bottom of this post:
What Happens When They Grow Up Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.
Eric Ogden for Newsweek
Christopher Jorwic, 17: He doesn't speak, despite therapy since childhood. His parents, who've been active in the autism movement for years, call him their 'gentle giant.'
|
Nov. 27, 2006 issue - Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He asks for it once, twice ... 10 times. In the kitchen of the family's suburban New Jersey home, Danny's mother, Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We're having spaghetti. But Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-oldsister, Rosalinda, wanders in to remind her mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to notice any of this. "Mom," he asks in a monotone, "why can't we have chicken and potatoes?" If Danny were a toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. "That's really what life with autism is like," says Loretta. "I have to keep laughing. Otherwise, I would cry."
Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens next?
As daunting as that question may be, it's just the latest in the endless chain of challenges that is life for the dedicated parents of children with autism. Twenty years ago, they banded together—largely out of desperation—to raise awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids and more money for research into autism, a neurological disorder characterized by language problems, repetitive behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children—or as many as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially awkward math whizzes to teens who aren't toilet trained—but who all fit on what scientists now consider a spectrum of autism disorders.
Some kids have made dramatic progress after intensive physical and behavioral therapy; many others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will establish legal guardianship to protect them. But no matter what level they've reached, many will need help for the rest of their lives. Most government-sponsored educational and therapeutic servicesstop at the age of 21, and there are few residential facilities and work programs geared to the needs of adults with autism. "Once they lose the education entitlement and become adults, it's like they fall off the face of the earth" as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy group.
According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But parents of youngsters with autism "have to navigate a maze and, if they find providers, then they have to figure out how to pay for it," says Singer. Grossman's early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues.
The article is quite expansive and concentrates on the bills that are currently being considered for passage in Congress but the meat of the article to me are the realities of livng anf growing with autism -- Not just for the individual but also for the families
The most important element that I want to highlight is awareness and edusction of those who dont know about autism.These kids deserve to be treated with dignity and tolerance in their communities and given vocational opportunities that suit thier strengths not just busy work hidden away in a "workshop for challenged people.
Heres the link :
No comments:
Post a Comment