High divorce rate in autism families is a myth

Parents of autistic children often hear that the divorce rate in families with autism is 80%, but a new study debunks that figure as a myth.

”There really weren’t any significant differences in terms of family structure when you consider children with autism and those without,” says study researcher Brian Freedman, PhD, clinical director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

via Autism Families: High Divorce Rate Is a Myth.

Grandparents of children with autism have a major role

Early intervention is essential for successfully treating children who have autism, and a recent survey shows that grandparents across the nation are making significant contributions in this area.

The Interactive Autism Network gave AARP an exclusive first look at the results of its new survey of grandparents who have grandchildren with Autism Spectrum Disorders (ASD). The Network is an innovative online project (a Web project of the Kennedy Krieger Institute, sponsored by Autism Speaks) that brings together tens of thousands of people nationwide affected by ASD with hundreds of researchers—all in search of answers.

The survey highlights the major role grandparents play in the lives of children diagnosed with ASD. According to the survey, grandparents not only are often the first to raise key concerns about their grandchildren’s development (by 31 percent), but they also support others who raise concerns (by 48 percent).

via Grandparents Austism Survey, autistic grandchildren, Amy Goyer– AARP.

Autism is a family affair

An often forgotten component of autism is the effect it has on the family.

Caring for an autistic child causes severe stresses on families. Behavioral problems are often the biggest struggle family members face with an autistic. Divorce rates are higher for parents of children with autism than the general population.

Among the many projects being conducted at the Waisman Center in Madison, researchers are studying how autism affects families. Leading that research is Waisman Center director Marsha Mailick Seltzer.

“The predominant pattern, not just in our study but in other studies, that the most stressful period is in the early childhood period,” Seltzer said. “We have a paper under review right now looking at divorce rates. They are higher in families of children with autism than the general population.”

via Autism is a family affair.

President Reagan’s Son Advocates for Alzheimer’s Awareness

When former President Ronald Reagan designated November as National Alzheimer’s Awareness month in 1983, roughly 2 million Americans had the fatal brain-wasting disease. Today, 15 years after Mr. Reagan himself was diagnosed with it, and five years after his death, more than 5 million Americans are struggling with Alzheimer’s.  The number of victims and the cost of their extended care are expected to increase. Experts say raising awareness about Alzheimer’s is a key to winning the fight against this disease.

Alzheimer’s is the most common form of dementia. It attacks the brain’s nerve cells, robs memory and impairs thinking and language skills. It’s currently the sixth leading cause of death in the United States.

“Every 70 seconds, somebody is diagnosed with Alzheimer’s disease,” says Michael Reagan, popular radio talk show host and son of former President Ronald Reagan, probably the most famous victim of Alzheimer’s.

Alzheimer’s as a family affair

Reagan says almost from the time his father first learned he was ill, he has been part of a national campaign to raise public awareness about this devastating and heartbreaking illness.

“Joining the efforts is like I’ve been in this for a long time, as my father wrote a letter back in 1994 telling the world he had Alzheimer’s disease, watching what my father went through as he deteriorated year after year after, and finally being bedridden, and then passing away 5 years ago [in 2004],” he says. He adds, “That’s why I’m involved.”

Via President Reagan’s Son Advocates for Alzheimer’s Awareness

Missouri Lawmakers Push to Mandate Autism Insurance Coverage for Kids

A group of Republican lawmakers joined Gov. Jay Nixon on Thursday to push legislation that would require insurance companies to provide coverage for certain therapies for autistic children.  Lawmakers attempted this last session but concerns about the cost of a mandate ended up killing the bill in the House. Those concerns remain but Nixon pledges 2010 will be the year that autism coverage becomes mandatory in Missouri.

As the mother of two boys with autism, Elizabeth Obrey has seen the progress that regular therapies can produce.  Her 4-year-old Chase now plugs through his A-B-Cs.  Her 7-year-old Nathan is opening up, beginning to read.

Their schooling is not cheap.  Even with insurance and a $500 monthly co-pay, Obrey pays thousands of dollars each year out of pocket for classes at Rivendale Center for Autism in Springfield. It is an overwhelming financial burden.

“When we moved, we sold a house and a business and that money, instead of reinvesting it in a house, it went to their therapies,” said Obrey.

With Nixon’s backing, a bipartisan group of lawmakers is pushing legislation that would not only mandate insurance companies provide coverage — up to $72,000 a year — but prevent them from refusing or restricting therapies.

“We know that 1 in 100 kids are being diagnosed, and we know that 1 in 58 boys born today will be diagnosed,” said Sen. Eric Schmitt, R-Glendale.

“As many of us know, autism is one of 12 major neurological disorders and the only one of those 12 that’s excluded from coverage by insurance carriers.  We believe that is grossly discriminatory and a civil rights issue,” said Rep. Dwight Scharnhorst, R-Valley Park.

Obrey said she talks to many parents who would jump at the chance to put their children in a program like Rivendale but who have no financial option to do so.

Arguments against the bill are a concern about the financial burden that could be placed on small businesses and the impact a mandate could have on already rising healthcare insurance premiums.

“This is another mandated benefit and, just like any other mandate, there is a certain amount of cost to require companies to provide that coverage, and, the smaller the group, the larger the impact,” said Rep. Kevin Wilson, R-Neosho.

For Obrey, even without coverage, she’ll sacrifice for her sons, because there’s no price for a chance at normalcy.

“I do think that our children are being excluded,” she said.  “If my child had cancer, would you pull chemo from them?”

Via Missouri lawmakers push to mandate autism insurance coverage for kids

The Sandwich Generation: Modern Dilemma of Elder Care

More than 25% of American families are involved in elder/parent care at some level. Today, the baby boomers are the “heart” of the sandwich generation.

To understand the significance of the Sandwich Generation, one needs to realize that the Sandwich Generation is THE largest segment of our population.

Who are these sandwich generationers?

Traditional sandwich: those sandwiched between aging parents who need care and/or help and their own children

Club sandwich: those in their 50s or 60s, sandwiched between aging parents, adult children and grandchildren. OR those in their 30s and 40s, with young children, aging parents and aging grandparents. (Term was coined by Carol Abaya)

Open Faced: anyone else involved in elder care. (Term coined by Carol Abaya)

Statistics further demonstrate the importance of understanding the sandwich generation scenario:

$34 billion a year are lost in employee productivity because of elder care responsibilities. More productivity is lost from elder/parent care responsibilities than from child care.

The cost to industry to replace experienced workers who leave their jobs to take care of a sick loved one is more than $7 billion a year.

Of full time employees who are caregivers, today 52% are men and 48% are women. This is a dramatic shift in the caregiver picture because of the high rate of divorce and family being geographically scattered.

77% of caregivers report they work less effectively.

More employees develop health problems from the stress of elder care than from child care.

While the sandwich generation is the largest segment of our population, those over 85 make up the fastest growing segment.

All of these statistics clearly show the undefinable challenges for adult children.

Via The Sandwich Generation: Modern Dilemma of Elder Care

How to Get Early Intervention Autism Therapy for Your Child

The good news is that it looks like very early intervention programs for children with autism really do help. The bad news is that services can be hard to find, and expensive.

Toddlers who participated in a study testing the Early Start Denver model for early intervention showed improved language skills and IQ, compared with children who didn’t get the specialized training, which emphasizes social skills and communication. The intensive therapy, which included 20 hours a week at home with a trained therapist and additional time working with parents, increased the IQ of the children by 18 points, compared with 7 IQ points in children who got more standard therapy.

Researchers and pediatricians have increasingly thought “the earlier, the better” when it comes to autism treatment, but this is the first hard evidence that working intensively with children who are younger than 2½ helps reduce the social and language deficits typical of autism. The study, which involved 48 children ages 18 months to 30 months, was published online Monday in Pediatrics.

Via How to Get Early Intervention Autism Therapy For Your Child

Mom Pleased with Support of Autistic Student

When Jill Mitchell first met with Yuma Elementary District 1 to inquire about services available for her autistic son, she was prepared to fight for them.

Mitchell, who moved to Yuma from Woodland Park, Colo., last summer, said services for her son Connor, 10, were not optional – she said she has read books and attended conferences and knows what works.

But despite some criticisms she had heard about special education programs at the district, Mitchell was pleased with what she found. “The fabulous thing about District 1 is that I didn’t need to fight because they agreed on everything,” she said.

The Arizona Department of Education audited Yuma Elementary School District 1 in October after a complaint was filed by a parent. The audit noted that 29 percent of special education teachers have not met the Highly Qualified standard in the subject area they are assigned to teach as mandated under the 2001 No Child Left Behind Act. And there are four positions currently filled by long-term substitutes.

Mitchell said she knew that her son needed a paraprofessional “and without blinking an eye, they agreed.”

Via Mom Pleased with Support of Autistic Student

Autism Odds: The Diagnosis is as Puzzling as the Behavior

“When you take a drug to treat high blood pressure or diabetes, you have an objective test to measure blood pressure and the amount of sugar in the blood. It is straightforward,” writes Temple Grandin. “With autism, you are looking for changes in behavior.”

Though she’s a PhD and a professor at Colorado State, Grandin is not a professional autism expert—in fact, her field is animal behavior. Rather, she’s described by the Autism Society as “inarguably the most accomplished and well-known adult with autism in the world,” and she’s the author of books on both animal behavior— Animals Make Us Human, Animals in Translation—and autism: Thinking in Pictures: and Other Reports from My Life With Autism.

As Grandin has recognized, diagnosing and even defining autism is challenging. Though parents whose children are severely autistic never argue about the syndrome, others say that the spectrum of the disorder is so wide that proper diagnosis is a puzzle with too many pieces. No wonder the prevalence, causes, and treatments of autism are so hotly debated.

Via Autism Odds: The Diagnosis is as Puzzling as the Behavior

Early Treatment Benefits Autistic Children, Study Shows

Clinicians have increasingly come to believe that the worst effects of autism can be blunted if the condition is identified and treated early enough. Now, the journal Pediatrics has published a study that seems to validate the theory.

The study is the first randomized, controlled trial for comprehensive autism treatment for children as young as 18 months old. While certainly not a cure for the condition, the study did find that intense early treatment yields major improvements in IQ scores, language processing, and in the ability to manage everyday tasks essential for early childhood development and education.

The University of Washington study was funded by the National Institute of Mental Health. It involved 48 children ages 18 to 30 months, half of whom were randomly assigned to receive the Early Start Denver Model, an intensive autism therapy protocol. The other half were assigned to a control group and received less intensive therapy.

After two years, those who participated in the Denver Model group had average IQ scores 17.6 points higher than the control group, putting them within the range of normal intelligence, while those in the other group gained just seven points, remaining in the zone of intellectual disability.

Via Early Treatment Benefits Autistic Children, Study Shows