Autism Speaks joined with tens of thousands of families and advocates across New York State to express extreme disappointment in Governor David Paterson’s veto of landmark autism insurance reform legislation – passed unanimously by the state legislature – and challenged the cost projections cited by the governor in justifying his decision. The organization immediately began conferring with key legislative allies to determine a course of action, which could include a call for a post-election session of the legislature and an override effort.
“Today is a sad day for tens of thousands of people with autism and their families, the result of a misguided fiscal decision that will actually cost taxpayers untold millions of dollars in the coming years,” said Bob Wright, co-founder of Autism Speaks. “This is a significant setback, but it is far from the end of the battle. We will not stop fighting until every child with autism in New York State has access to the treatments they need and deserve.”
The legislation – co-sponsored in the State Senate by Senators Neil Breslin and Thomas Duane, as well as Charles Fuschillo, Jr., and in the Assembly by Assemblyman Joe Morelle and Speaker Sheldon Silver – received overwhelming bi-partisan support, with unanimous passage in both the State Senate and Assembly.
“We urge the autism community to call Governor Paterson (518-474-8390) and express their disappointment,” said Peter Bell, executive vice president of programs and services for Autism Speaks. “Contact your State Senator and Assemblymember and insist that they see through their commitment to the enactment of this critical legislation and call for an override.” (visit Autism Votes to find your local legislator)
The governor’s veto memo stated that his decision was based purely on fiscal considerations and not the legislation’s merits. The memo, though, cited inaccurate costs projections. Actuarial reports have concluded that the actual costs to the state and local municipalities would be negligible during the first year and no more than $30 million once fully implemented. Moreover, private insurance policyholders would see minor premium increases of less than 0.65% – far less than the inflated figures included in the memo.
Twenty-three states have already enacted legislation to end insurance companies’ discrimination against people with autism. Governor Paterson is only the second governor in the United States to veto such legislation, joining South Carolina Governor Mark Sanford, who vetoed Ryan’s Law in June, 2007. The S.C. legislature subsequently overrode Sanford’s veto and Ryan’s Law was enacted.
To learn more about Autism Votes, an initiative of Autism Speaks focused on federal and state legislative advocacy, please visit www.autismvotes.org.
“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and will address the other themes we received in this weekly post.
In the last two decades, autism prevalence as reported in the scientific literature has increased by more than 600%. In 2009, the latest estimate of autism prevalence in the United States, as reported by the Centers for Disease Control was 1 in 110 children. Since then, a number of studies have sought to investigate the cause(s) of this dramatic increase in autism prevalence over time. The most recent findings suggest that at least a portion of the increase in prevalence can be attributed to changes in diagnostic practices and increased awareness of autism over time, as well as other social factors such as advanced parental age. However, converging evidence also suggests that while these factors account for a portion of the increase, they cannot alone explain the dramatic rise in autism prevalence.
The criteria for assessing autism has changed over the last 20 years resulting in a broadening of autism diagnoses and the identification of cases that would not have been diagnosed as such using older criteria. Looking at a population of children in California, researchers from Columbia University reported that approximately 26% of the rise in autism caseload between 1992 and 2005 could be directly attributed to changes in diagnostic criteria, specifically the shift from mental retardation diagnoses to autism diagnoses. In other words, 1 in 4 children diagnosed with autism in California today would not have been diagnosed using older diagnostic criteria.
Another aspect of the autism landscape that has changed over the past 20 years is an increase in the awareness of autism among the general public as well as healthcare professionals. In 2010, the Columbia University research team again examined the California sample in an effort to quantify the influence of autism awareness on the rise in autism prevalence. The investigators found that children living in close proximity to another child that had been previously diagnosed with autism had a better chance of being diagnosed with autism themselves. The proposed explanation is information diffusion, or parents talking to and educating other parents about autism resulting in an increased likelihood of their children being diagnosed. It is estimated that 16% of the increase in autism prevalence over time in California was due to social influence and increased awareness.
An additional social factor that has been implicated in contributing to the increase in autism prevalence is advanced parental age. A number of recent publications investigating the relationship between parental age and autism have demonstrated that older parents are at increased risk for having a child with autism. This is not surprising since increased parental age is associated with a slightly increased risk for other developmental disorders as well. Researchers from the California Department of Public Health reported that parental age and particularly maternal age is a significant risk factor for autism, with a 10-year increase in maternal age increasing the odds of having a child with autism by 38% and mothers over the age of 40 at highest risk. Researchers at Columbia University similarly found, that older mothers and fathers were at increased risk of having a child with autism and estimated that the increase in parental age over time can account for 11% of the increase in prevalence over the same time period. The underlying mechanism behind the relationship between increased parental age and risk for autism is currently under investigation.
Based on the abovementioned research, approximately 53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%). While this research is beginning to help us understand the increase in autism prevalence, half of the increase is still unexplained and not due to better diagnosis, greater awareness, and social factors alone. Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects currently supported by Autism Speaks.
The increase in autism prevalence is real and the public health crisis is growing. More families are affected by autism today then ever before. While Autism Speaks has cast a wide net to explore the role of genetic and environmental factors in increasing the risk for autism, the research community requires additional funding support to increase the pace of discovery. Never before has the need for research into the causes of autism and effective treatments for autism been greater.
 Prevalence of Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report. 2009;58(SS-10). http://www.ncbi.nlm.nih.gov/pubmed/20023608
 King, M. & Bearman, P. (2009). Diagnostic Change and Increased Prevalence of Autism. International Journal of Epidemiology, Volume 38, Issue 5:1224-1234.
 Grether, et al. Risk of Autism and Increasing Maternal and Paternal Age in a Large North American Population. American Journal of Epidemiology. 2009;170(9):1118-26. http://www.ncbi.nlm.nih.gov/pubmed/19783586
Utah lawmakers explore Medicaid waiver for children with autism (Salt Lake City, Utah)
On average, about one in 110 children in the United States has an autism spectrum disorder, while in Utah the ratio is approximately one in 130. Soon-to-be-released figures will likely show an even greater prevalence of the disorder, according to Michael Hales, director of the state Division of Medicaid and Health Financing, and that means a greater demand for services for children with ASD and a great need for assistance for the children’s parents who are the primary caregivers. Read more.
Preschool class open to abled, disabled kids (Upper Township, N.J.)
At the end of a hallway called “Caring and Sharing Road,” Upper Township Primary School’s youngest students sit on a blue rug decorated with numbered fish as teacher Theresa Bryan reviews the day’s agenda: art class, cupcakes for a birthday, a book about pumpkins. Read more.
Dance, baby, dance! (India)
Although dance therapy is a relatively new profession, it is based on the assumption that the body and mind are in constant reciprocal interaction. Motion influences body image and leads from a change in body image to a change in psychic attitude. Read more.
Hi-Lo Reaches Out To Best Care (Jamaica)
In a bid to ensure that children with special needs are equipped with the knowledge and skills needed to become productive members of society, Hi-Lo Food Stores recently presented the Best Care Foundation with an education grant. Read more.
Visit to N.J. pharmaceutical company helps disabled students focus on their abilities (East Hanover)
It wasn’t an ordinary field trip for 50 students who visited the Novartis pharmaceutical company yesterday. Read more.
Comedy Central’s Night of Too Many Stars: An Overbooked Concert for Autism Education is hosted by Jon Stewart and will air at 9 p.m. EDT/6 p.m. PDT. During the airing of “Night of Too Many Stars: An Overbooked Concert for Autism Education” on COMEDY CENTRAL, viewers who call in to a celebrity operated phone bank and make a donation of $100 or more to the program will receive a complimentary White Castle Original Slider®-Scented Candle. Comedians include Stephen Colbert, Tina Fey, Steve Carell, Jimmy Fallon, Chris Rock, Triumph the Insult Comic Dog and many, many more. Viewers will be urged to call in to a celebrity phone bank to make donations. Answering the phones during the broadcast will be many of the comedians as well as George Clooney, Larry David and Jimmy Kimmel. Autism Speaks receives 10 percent of all proceeds. Check your local listings.
This Family Services blog, is written by Mary Carol Grabill. She is a mother of three, including an 11-year-old boy, Tommy, who has autism.
The first time I was exposed to Right Fit and Suzanne Gray, was during a summer camp for children with autism that my son Tommy attended. Part of the camp’s day was spent with Suzanne and the Right Fit staff, doing exercises that focused on different aspects of movement, body awareness, social skills, and much more. Right Fit’s “Raise the Bar” program uses physical fitness as a therapeutic tool to motivate, educate, and reinforce positive behavior in youths with autism.
I immediately witnessed how good Suzanne was with Tommy. She has so much positive energy, never tires, and is always working on a new project to benefit the lives of children and adults touched by autism. I asked her if she could work one on one with Tommy and that is how we got started with Right Fit.
On our first day, when I walked Tommy into her facility, I was nervous about Tommy’s first session. I assumed it would end early, due to Tommy’s unpredictable behavior, so I thought I would stick around. To my surprise, Suzanne suggested, “Why don’t you go grab a cup of coffee or something, Tommy will be fine here.” “What?!!!” I thought. “Leave Tommy alone?” I’m glad I did.
It’s amazing what kids can do when Mom is not around. While I was gone, Suzanne had complete control of Tommy, who can be quite the manipulator. But here is the difference: he wants to be at Right Fit. I decided then and there, this was a place where Tommy could thrive and call his own.
Tommy currently works out in Right Fit’s Raise the Bar program four times per week, in one-on-one and group settings. As a result of his participation in Raise the Bar, we have been able to take Tommy off the medication he took during the previous several years. He is physically fit and his self-stimulating behavior has decreased significantly. I firmly believe that exercise, and I mean a lot of exercise, has had a major impact on my son’s demeanor.
Everyday after school Tommy says, “I want to go to Right Fit.” I understand why: it is filled with good, honest, funny, caring, enthusiastic and hard working people. They are always positive, and if Tommy comes in stressed from school, which is typical, they want to know about it and provide an avenue for him to release his stress.
I don’t know what my family would do without Right Fit. Suzanne Gray and her entire staff are excellent. They all respect my son and that is one of the reasons he responds so well to Raise the Bar!
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.
Autism Speaks Board of Directors member Holly Robinson Peete was highlighted as the “Cause Celeb” in the October issue of Delta Sky magazine. Holly is a huge advocate not only for Autism Speaks, but also for the autism cause in general. She and her family have shared their story not only in the media but also in books. Holly and her daughter Ryan wrote a children’s book called “My Brother Charley” and Rodney Peete wrote a personal story of coming to grips with his son’s autism diagnosis in “Not My Boy.” We thank Holly for her willingness to participate in this column and encourage you to take a look!
Check out more about Holly here!
Miami Township Center Offers Help for Families Facing Autism (Miami Township, Ohio)
Chances are you know someone who has autism. Ten years ago, one out of 10,000 babies born were diagnosed with autism. Today, the Centers for Disease Control (CDC) reports that the prevalence of autism has risen to one in every 110 births in the United States; the rate for boys is higher, one in 70 births. According to the Autism Society, autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Read more.
Dogs Reduce Stress in Kids with Autism (My Health News Daily)
Specially trained service dogs may reduce stress in children with autism, according to a new study. The results showed children with an autism spectrum disorder experienced a decrease in levels of the stress hormone cortisol after a service dog was introduced into the family. Autism spectrum disorders (ASDs) are a range of conditions in which kids have trouble communicating and interacting with others, and behave appropriately in social situations. Read more.
Autism rights rally set for tomorrow night (Staten Island, N.Y.)
Tomorrow night, the borough will “Stand Together for Autism Services on Staten Island.” An autism rights rally from 7 to 9 p.m. in the Michael J. Petrides School, Sunnyside, will formally kick-off an Island-wide initiative designed to give families the resources they need in dealing with the disease. Read more.
Grants from Community Foundation helps Appleton Area School District buy Apple iPod Touch devices for disabled children (Post Crescent)
Last school year, Sarah Hall began a tiny experiment using iPod touch technology to help students with autism disorders gain greater independence, communicate more effectively and function better in school. Read more.
Construction starts on preschool, offices (BlueRidgeNow)
Immaculata Catholic School and St. Gerard House held a ground-breaking blessing and ceremony Tuesday for a joint new building on Oakland Street to house two new preschools and administrative offices. Read more.