In the 25 days leading up to Autism Speaks’ fifth anniversary, we summarized significant advances in autism science and updates since these advances occurred. This is a time for celebration and reflection, as well as focusing on next steps. On the eve of the fifth anniversary, this opinion piece, written by Nicholas Kristof, appeared in the New York Times and has generated considerable interest.
At Autism Speaks, we are investigating environmental links to autism as well as gene-environment interactions through our various grants and initiatives. In our environmental portfolio, we are currently supporting grants that examine the effects of environmental agents in animals, in which we look for some of the hallmarks of autism. Researchers in this area are studying animals with different genetic mutations and environmental exposures to the response of the immune system, the effectiveness of the body’s systems at clearing toxins and in changes in the expression of certain genes that occur as a result of the early environment. In addition we are also funding an expansion of epidemiology and brain development projects, including the Early Autism Risk Longitudinal Investigation (EARLI) and the Infant Brain Imaging Study (IBIS) to learn about gene-environment interactions that may affect the developing fetus. In the next weeks, we’ll be posting several pieces about gene-environment interactions to educate our community on these important interactions and inform you of the latest autism research in this area.
Do Fertility Treatments Raise Autism Risk? (Boston, Mass.)
Doctors at 15 autism treatment centers nationwide have collected data that show an association between autism and children conceived through in vitro fertilization, WCVB-TV in Boston reported. Read more.
New hope for autism care (Scotland)
A new study by researchers from Edinburgh could aid the search for treatments for an autism condition which affects more than 1,000 girls in the UK. Read more.
Pushing the limit (Corvallis, Ore.)
Cheers erupted Monday at the Osborn Aquatic Center as Rachel Grant slowly floated in a pool on her back – without any assistance – for the first time.Read more.
Do what’s best for special needs kids (Canada)
Debate raged this week over the use of educational assistants (EAs), the people in Saskatchewan classrooms who assist special needs students. Read more.
Parents of teen with severe autism allege abuse at Orlando school (Orlando, Fla.)
In fall 2008, 15-year-old Christopher came home from school with a contusion on his forehead and a scrape on his nose. Read more.
Great expectations? The Autism Act meets hopes, misconceptions and realities (U.K.)
The 2009 Autism Act promised much but putting it into action is a whole different ball game, even though some improvements can be delivered at very little cost, writes Dr Mitzi Waltz. Read more.
Hampton Roads mother of autistic child speaks out to delegates who voted against autism insurance bill (Va.)
Vania O’Keefe’s son, Sean, is one of many American children with autism. Read more.
SC budget would cut services for 30K disabled (Columbia, S.C.)
Children with autism, people with spine and brain injuries and the long-term disabled in job programs are among the 30,000 people who would lose state help under a $5.1 billion spending plan approved by a House committee Thursday. Read more.
Autism Summit held at S.U.P.E.R. Learning Center (Lakemore, Ohio)
S.U.P.E.R. Learning Center, located in Lakemore is inviting the public to a 2010 Autism Summit which will be held March 13 at the school from 8 am until 3:30 pm. Read more.
A new resource is available to Del Norte County residents who are at risk of wandering off and getting lost. Read more.
New devices aid task of finding missing people (Del Norte County, Calif.)
Council says no to special needs centre (UK)
Plans for a revamped special needs centre in Vange have been turned down following a protest from residents. Read more.
Life Works set to unveil new home (Longview, Wash.)
A once-empty warehouse has been transformed into a light, cheery hub of classrooms, offices and spaces for getting exercise, learning to cook, puttin’ on the Ritz and for kids to romp. Read more.
City’s moving on Freedom Ride (Orlando, Fla.)
Perhaps Orlando will prove to have a heart after all when it comes to providing a vital service for some of the area’s most vulnerable kids and adults. Read more.
Camp For Kids With Disabilities Eliminated (Colorado Springs, Colo.)
A Southern Colorado mother is speaking out after learning a Colorado Springs city program that helps children with disabilities has been canceled. Read more.
Autism strikes adults as well (Joplin, Mo.)
While much of the attention directed toward autism is centered on children the condition is pervasive. Read more.
Bangor guesthouse owner killer gets 12 years (U.K.)
A man who knifed a Bangor guesthouse owner to death in a “frenzy” was jailed for life today and told that he will have to serve at least 12 and a half years before even being considered for release. Read more.
Man who lost camera gets replacement from Walleye (Toledo, Ohio)
Simon Greenspan was pleased but casual yesterday about meeting his hockey hero, Toledo Walleye defenseman JC Sawyer. Read more.
Police criticised for failing to properly investigate rape claims (U.K.)
Police failed to properly investigate the alleged rape of a Worcestershire man who was later killed, an investigation has found. Read more.
Friend: NY Mom Had Obsessed Over Dead Son’s Autism (NYT.com)
Gigi Jordan quit a high-powered job as a pharmaceutical company executive and abandoned her social life to devote all her time to her severely autistic son. Read more.
A yen for Pokemon (Forest Grove, Ore.)
At 5-feet-7, with black, close-cropped hair and sporting a hip pair of glasses, Jeremiah Stephens looks much older than his 12 years. Read more.
AUTISM SPEAKS NEWS
Singing for a cure for autism (The Rider News)
Not everyone is blessed with a golden voice like Mariah Carey, but many belted it out for a good cause last Friday at the Alpha Xi Delta (AZD) Karaoke for the Cure Pub Night to help raise money for the international philanthropy Autism Speaks. Read more.
The NCS, or National Children’s Study, was authorized by Congress in 2000 as part of the Children’s Health Act. This study, unprecendented in size and scope in the United States, will seek to recruit hundreds of thousands of pregnant women to ultimately enroll and follow 100,000 children from gestation through adulthood. During the course of the study, parents and children will be studied carefully, with measures of behavioral, psychosocial and medical development tracked. This includes autism and autism spectrum disorders. Recent prevalence estimates suggest that around 1,000 children born to mothers enrolled in the study will develop ASD.
The overarching goal of the study is to examine how genetic and environmental factors affect child health and development. In addition to screening for autism spectrum disorders at 18 and 24 months, the current study protocol will collect multiple measures of genetic factors and environmental exposures, including specimens from mother, father and child at multiple times during development and adolescence, examination of environmental exposures, as well as medical information and medical events. The term environment is used broadly, and the study is very comprehensive in the frequency and specificity of examinations, as well as keeping in mind the magnitude and duration of a variety of exposures (medical, chemical, behavioral, psychosocial, demographic). Autism Speaks is currently working with the NCS to create a more developed and enhanced autism screening and diagnosis protocol, and identify solutions to clinical and ethical questions. This means that the NCS will be an instrumental tool for examining the relationship between genes and the environment and their relation to developmental disorders, including autism.
Because of the comprehensive nature of the study, families are expected to contribute a great deal. However, being enrolled in the NCS also provides an opportunity to contribute to a rich database of health information. This health information will be used to make policies on a statewide and federal level, identify possible intervention and treatment strategies for those enrolled, and provide participants with in depth evaluation and long-term follow up that they might not have received elsewhere. For the study to be successful, families should be willing to participate. Recruitment has already begun, and the study looks forward to talking to families who may be eligible to join – not just from those affected by autism, but those who are not affected. That means that your friends, family and neighbors could enroll even if you do not participate!!
Research facility to bring innovative treatments (Houston, Texas)
Scientists and physicians in a new building, all focused on the brain and bringing treatments to Houstonians faster. That’s the story behind a huge new biomedical research building that opened today. Read more.
Research Builds on Genetic Link to Autism and Schizophrenia (Science Daily)
A genetic link between schizophrenia and autism is enabling researchers to study the effectiveness of drugs used to treat both illnesses. Read more.
Do Toxins Cause Autism? (NYT.com)
Autism was first identified in 1943 in an obscure medical journal. Since then it has become a frighteningly common affliction, with the Centers for Disease Control reporting recently that autism disorders now affect almost 1 percent of children. Read more.
Gene Mutation Is Linked to Autism-Like Symptoms in Mice, Researchers Find (Science Daily)
When a gene implicated in human autism is disabled in mice, the rodents show learning problems and obsessive, repetitive behaviors, researchers at UT Southwestern Medical Center have found. Read more.
Scent research could help autism understanding (U.K.)
New research into how animals bond with each other could shed light on the causes of autism and anxiety disorders, according to an Edinburgh scientist. Read more.
Watch How You Hold That Crayon (NYT.com)
Noah Lascano, 8, had a problem: His teachers couldn’t read his handwriting. His homework became a frustrating exercise in writing once, and then, at the teacher’s request, writing again, just for legibility. Read more.
West Ham boss helps autistic school (U.K.)
Hillingdon’s only school for autistic children is set to expand, after getting a helping hand from the owner of West Ham United. Read more.
Feds probe special needs school (Boston, Mass.)
The U.S. Justice Department has opened an investigation into whether a Massachusetts special needs school violates federal disability laws by disciplining students with electric shock therapy. Read more.
Students with autism learn work skills (Richmond, Va.)
High school senior Ann Marie Chevalier quickly folds baby blankets in the mother-infant unit at St. Mary’s Hospital – and then moves on to her next task. Read more.
Family Meets With Oregon School District Over Field Trip (Oregon, Wis.)
An Oregon mother said she is still looking for answers after her 13-year-old son with high-functioning autism was not allowed to go on an overnight school trip. Read more.
Families reel as state cuts respite funding (Gary, Ind.)
Every Wednesday, 10-year-old Bobby Long expects to see his state-provided caregiver at his door to drive him to a weekly therapy session. Read more.
Antibully measure advances to Senate (Boston.com)
A bill aimed at dramatically reducing bullying in schools gained a key endorsement yesterday and will go to the Senate for a vote early next month, weeks after a South Hadley teenager committed suicide following apparent harassment from her peers. Read more.
Mandated Insurance Coverage of Autism Proposed (Mich.)
On February 5, 2009, House Bill number 4183 was introduced by Republicans. This bill was proposed to amend an existing policy titled “The insurance code of 1956.” This existing policy, which was enacted in 1956, covers what insurance money can be spent on. The new bill proposes that the treatment of autism spectrum disorder be covered by insurance. More specifically, House Bill 4183 proposes a change in insurance codes that would affect commercial insurers and health maintenance organizations. Read more.
Parents of Autistic Children Disappointed by Bill’s Failure (Danville, Va.)
It’s a disappointing decision for many parents of children with autism. Legislation that would’ve required many Virginia employee health care plans to cover a particular treatment was killed in the House on Tuesdsay. Read more.
One family’s struggle to claim state-mandated insurance benefits for autism (Ill.)
Just before Thanksgiving, Ember and Mike Burke faced the very real threat of temporarily stopping therapy and treatment for their 3-year-old son, Brendan, who has autism. Read more.
Judge: Center must continue autism therapy (Alhambra, Calif.)
A medical center in Alhambra has been ordered to continue treating children with autism with a “special therapy” until a judge issues a further ruling on the treatment. Read more.
Hunt for missing St Leonards man moves to Rock-a-Nore (U.K.)
Police looking for missing man Piers Hopson are shifting their focus to Hastings Old Town. Read more.
Marathon grandad to run to help disabled children (U.K.)
A 75-year-old will take on a marathon to raise money for disabled children. Read more.
West Mercia police ‘failed’ man who was killed (U.K.)
An inquiry into the killing of a man who had complained about receiving threatening messages has found police responsible for a number of “failings”. Read more.
The Autism Debate: Who’s Afraid of Jenny McCarthy? (TIME)
In person, surprisingly, Jenny McCarthy comes across as corn-fed cute rather than overwhelmingly beautiful. She has a common touch, and a woman even slightly more beautiful would struggle to connect as she does. When McCarthy meets a mom, when she spits forth a stream of profanity and common sense — the foulmouthed comedian from Chicago never far from the surface — she is there as a mother, not as a celebrity or starlet. That’s what got her there, but that’s not who she is once she’s there. She speaks to so many frustrated, despairing mothers of autistic children because she is plausible, authentic. If you needed a woman to bring hope to these mothers, you couldn’t ask for better casting than Jenny McCarthy. Read more.
Autism documentary features local resident (N.J.)
“Make Friends With Autism”, a documentary featuring nine-year-old North Arlington resident Tyler Banuls, can be found at the Web site wwww.makefriendswithautism.org. The site and documentary aim to provide information on Autism Spectrum Disorders and support for families. Read more.
Touching Moment (Rosedale, Md.)
Our Lady of Mount Carmel High School sophomore wrestler JT Dulany usually begins warmups well before any of his teammates. Read more.
William Jordan (Jacksonville, Fla.)
When you first meet William Jordan, you can tell right away that something is unique. Read more.
Granddad felt dread about disabled girl (Phoenix, Ariz.)
Nearly every morning, Leonard Orta Sr. returned to his Phoenix apartment from his graveyard shift and asked about his granddaughter. His son would tell him the 5-year-old girl was fine, although Orta sensed a lie. Read more.
10-Year Prison Term For Man Who Choked His Disabled Son (Hartford, Conn.)
A city man who admitted to authorities that he choked his disabled son while high on angel dust was sentenced to 10 years in prison. Read more.
Palin, really a special needs advocate? (MSNBC.com)
During the Oct. 15, 2008 presidential debate, First Read made the point that there remain many unanswered questions as to what Sarah Palin’s specific policy initiatives would be for children with special needs after John McCain claimed that no one knows more about autism than Sarah Palin. Read more.
AUTISM SPEAKS NEWS
Autism Speaks Receives $1 Million Donation (tonic)
Sumner Redstone, one of the world’s most prominent and successful media entrepreneurs, donated $1 million dollars to Autism Speaks, the organization announced yesterday. Read more.
Autism awareness riders make their way from Florida to California (Sulphur, La.)
They call themselves “the Wolf Pack.” A trio of young Connecticut men in their 20s are bicycling across the country from St. Augustine, Fla., to San Diego trying to raise awareness of autism and collecting donations for Autism Speaks. Read more.
Toys”R”Us, U.S. Launches Fundraising Campaign to Help Autism Speaks Solve the Autism Puzzle (Wayne, N.J.)
Toys”R”Us, U.S. today announced that its fundraising campaign to benefit Autism Speaks will begin Sunday, February 28 and continue through Friday, April 30. Throughout the campaign, monetary donations will be collected at all Toys”R”Us and Babies”R”Us stores and online at Toysrus.com/AutismSpeaks. Autism Speaks is the nation’s leading organization dedicated to increasing awareness of autism spectrum disorders; funding research into the causes, prevention and treatments for autism. Read more.
Five years ago today Autism Speaks Co-founders Suzanne and Bob Wright appeared on the Today Show to discuss the founding of Autism Speaks. Since then, it has grown into the world’s largest autism science and advocacy organization. Visit www.autismspeaks.org to learn more.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 25th item, Autism Prevalence Reaches 1:110, is from Autism Speaks’ Top 10 Autism Research Events of 2009.
In 2009, two major studies using different research methodologies yielded strikingly similar and eye-opening results showing that ASD affects approximately 1% of children in the United States. Based on data collected just four years earlier, it was found that ASD affected 1 out of every 150 children in the U.S. This represents a 57% increase in ASD prevalence in a relatively short period of time. Both studies also found that ASD continues to be four times more common in boys than girls.
In the first study, published in Pediatrics, authors from the U.S. Department of Health and Human Services (HHS) and the Centers for Disease Control and Prevention (CDC) collected data through the National Survey of Children’s Health (NSCH) on parent-reported diagnosis of ASD. Among a nationally representative sample of 78,000 children aged 3 to 17 years, the investigators found that 1 in 91, or an estimated 673,000 children in the U.S. had an ASD. While concerns lingered over the parent-reported nature of the data, this large-scale study set the stage for another major publication on ASD prevalence with similar results.
In December researchers at the CDC released new prevalence data collected by the Autism and Developmental Disabilities Monitoring Network (ADDM), a series of surveillance sites throughout the U.S. that maintain medical and service records on children with autism. By abstracting data and subjecting those records to stringent clinical evaluation, the authors found that approximately 1 in 110 children, 1 in 70 boys, met the criteria for ASD. This 1 in 110 statistic, based on data collected in 2006, represents a 57% increase from the 1 in 150 statistic which was based on data collected by the ADDM network in 2002 using identical research methods to the current study.
In a year that was jam-packed with publications on autism epidemiology, a number of other studies sought to investigate the reasons for the dramatic increase witnessed in autism prevalence. Researchers from Columbia University reported that approximately 25% of the rise in autism caseload in California between 1992 and 2005 could be directly attributed to changes in diagnostic criteria that resulted in a shift from mental retardation diagnosis to autism diagnosis. Therefore, converging evidence from this study and others around the world suggests that while changes in diagnostic practice may account for a portion of the increase, they cannot alone explain the rise in autism prevalence, and other factors, including environmental factors, likely play a role. One environmental factor that continues to be implicated in the increase in autism prevalence is parental age. Researchers from the California Department of Public Health reported in 2009 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.
The prevalence studies of 2009 helped shed additional light on the immense nature of the autism public health crisis. With 1% of the U.S. population affected by ASD, and emerging data suggesting that 1% of the global population may be affected by ASD, never has the need for funding to support research into the causes and treatments of ASD been greater. In addition, these findings call attention to the necessity for more accessible diagnostic and intervention services for the growing population of those affected. In the CDC’s ADDM report and a separate study published in the Journal of the American Academy of Child and Adolescent Psychiatry, it was reported that while we can now reliably diagnosis autism spectrum disorders at two years of age, children on average are still being diagnosed at close to 6 years of age. This means that there is a large gap between the time that children can effectively be diagnosed at age 2, and the time they are actually receiving a diagnosis – valuable time lost where early intervention services can dramatically improve outcomes.
Did you know?: Autism Speaks, in partnership with the CDC, developed the International Autism Epidemiology Network, a forum to facilitate collaboration and information sharing between autism experts around the globe. Launched at the International Meeting for Autism Research (IMFAR) in May of 2005, today the network supports over 100 participants from 30 countries and its activities have resulted in over $2.5 million in targeted international epidemiology research funding from Autism Speaks. This includes the launch of two RFAs in 2008 designed specifically to better understand global autism prevalence and risk factors – click here for more information on the funded grants.
We want to hear from you – how has autism changed since 2005? What progress has been made in research, legislation and awareness? How has the autism community changed?
And most importantly, how has your loved one (or, you, if you have autism) changed in the past five years? Please share your success stories in the comments section below.