Edited/Written By: MARTY OMOTO, Director/Organizer
To Respond to THIS report reply to: martyomoto@rcip.com CDCAN website: www.cdcan.us
Autism Numbers "Exploding"
* 60 MINUTES SEGMENT THIS SUNDAY 2/18 ON AUTISM
* FOCUS ON EARLY DIAGNOSIS AND TREATMENT
* HIGHLIGHTS WORK OF UC DAVIS MIND INSTITUTE
SACRAMENTO - The CBS News program "60 Minutes" will broadcast this Sunday (February 18) evening a report by correspondent Lesley Stahl on the impact of early diagnosis and treatment of children with autism, highlighting the work of the University of California at Davis Medical Investigation of Neurodevelopmental Disorders (MIND) Institute in Sacramento. [Note: the program broadcasts at 6 PM, Pacific Time, in Northern California, and in other parts of the State and in the country, the time may be the same or an hour later - check your local listings or contact your local CBS affiliate]
With no known cause that government officials and advocates agree on or a known cure for autism yet, researchers are trying to detect the earliest signs of the disorder so they can begin treatment earlier, giving parents some hope to cope with a disorder that the government now says affects about one in every 150 children nationwide. The primary goal of earlier diagnosis is to be able to treat the disorder as early as possible in a child's life and lessen the disability associated with autism. The analysis also found that delays in diagnosis were common: an average of at least a year and a half from the time parents first reported odd speech problems or other social deficits, typically around the age of 3.
“While we still do not have all the answers to autism, what we do know is that the earlier you detect it, the earlier you can intervene and the better the outcomes for the child,” said Sally Ozonoff, vice chair of research and a professor of psychiatry and behavioral sciences and one of the principal investigators for the study at the MIND Institute.
Number of Autism Related Cases "Exploding" Across Nation & State
* About one child in 150 develops autism or a related disorder like Asperger's syndrome by the age of 8, according to a federal government study released February 8th, by the Centers for Disease Control and Prevention. The analysis involved these states: Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia and Wisconsin.
* The study, which looked at cases of autism spectrum disorders in 14 states in 2000 and 2002 confirmed recent estimates used previously by federal and state government agencies, which put the number at roughly one in 160 children. In the 1980's the number was estimated at 1 in 200 children.
* Researchers said the study was the most comprehensive analysis to date of the increasing numbers of children with autism or related disorders in the US.
* In California, the numbers of current caseload of persons with autism being served by the 21 non-profit regional centers under the Department of Developmental Services have as one advocate put it "exploded" with a dramatic increase from 4,911 in August 1993 to over 31,000 persons in 2006. The State reports that about 77% of those persons are children under the age of 18 years. It is considered by advocates and state officials as the fastest growing major developmental disability in California touching every community and ethnic group.
* The Department of Developmental Services reports that the California's autism caseload increased by 634% from 1987 to the end of 2002, with about a net increase of over 3,000 persons with autism being added every year to the caseload. The state considers autism as the fastest growing developmental disability.
* The percentage increase in the number of children and adults with autism who received services through the 21 regional centers under the Department of Developmental Services during the first quarter of 2005 more than tripled the percentage increase in the number of individuals for the three other primary types of developmental disability combined, according to the State.
* Those numbers do not include thousands more who may not know of those services or fall outside the eligibility requirements to receive it.
[Note: The State changed eligibility standards - some critics say significantly narrowed it - that came into effect in 2004. The Governor, as part of his budget for 2007-2008, proposes to continue the change in eligibility that originally was supposed to expire last year.. Democrats in both houses of the state Legislature seem at this point to support doing so, according to Capitol observers]
* The California Department of Education reported that in the 1992-93 school year, there were 1,982 students with autism who were enrolled in grades Kindergarten through 12th grade with that number dramatically increasing by 2004 to 21,948. The Department of Education says the number of students with autism enrolled in K-12 schools has increased over 1,000% in the past 23 years with nearly every region of the state reporting a doubling of the numbers of children with autism being enrolled in recent years.
Major Impact to State and Federal Resources and Budget Issues
* The issue - in terms of early intervention, treatment, possible cures or prevention - and for later supports and services has major impact to both the federal and state budgets for current and long term funding of support services, accessible and affordable housing, transportation, employment, education (including adult and higher education programs serving people with disabilities, including those with autism), mental health services and more.
* The rise in numbers potentially impacts other services not under the Department of Developmental Services - including Medi-Cal, In-Home Supportive Services (IHSS), special education, adult education, employment training, transportation, housing and other related issues.
MIND Institute In Sacramento One of 17 Sites In Study
* The MIND Institute is one of 17 sites participating in the High Risk Baby Siblings Research Consortium, which represents studies enrolling infants as early as 1 month old with at least one sibling diagnosed with autism.
* These children may have as much as a 10 times higher risk of the disorder than children with typically progressing brothers and sisters, according to the MIND Institute. The children are assessed at various points up to age 3 for distinctions in their development that might indicate autism.
* MIND Institute researchers Sally Ozonoff and Sally Rogers will be featured on the on program. Sally Ozonoff, a professor of psychiatry and behavioral sciences and principal investigator for the study at the MIND Institute, shares her pioneering work in identifying behaviors prior to age 2 that predict a later diagnosis of autism.
* Ozonoff has begun studying 200 babies from birth to try to determine the earliest signs of autism in order to diagnose it and begin treatment before 12 months. So far, she has found that early signs of autism include less interaction, less eye contact and the child paying more attention to objects than people.
* Most children, according to Ozonoff, will respond to their name called from behind them; about half of the children she sees who do not, turn out to have autism. In another test, infants are shown toys that a child would normally reach for and make eye contact with the person holding it. Babies with autism seldom show interest in toys held out to them and rarely look people in the eye Ozonoff says. She though she might be able to see the outward signs of the autism spectrum disorder as early as six months, but "the truth of the matter is, we cannot," she tells 60 Minutes, but is hoping to learn much more in the 18 remaining months of the study.
Early Treatment and Intervention MIND Institute Study
* Sally Rogers, a professor of psychiatry and behavioral sciences and the other principal investigator for the study, demonstrates interventions with toddlers that help parents learn how to deliver early treatment and intervention at home telling Lesley Stahl of 60 Minutes that by using early treatment "...we are certainly creating new connections in the brain. We don't know how to touch the biology of autism. But I do think that the behaviors associated with autism can be reduced to the point where they are not obvious anymore."
* The early intervention study — part of a MIND Institute partnership with the University of Washington Autism Center, enrolls very young children who have been diagnosed with autism. There can be a waiting period between a diagnosis and community or school-based treatments. In this treatment program, parents are taught to intervene in the home right away, while they wait for other services to begin.
* Rogers said she was optimistic about the initial stage of the study, saying that “Parents are very capable therapists. Raising a child with autism takes so many different skills. I try to facilitate the parents' own abilities, showing them how to use specific types of play and interaction techniques to increase their children's enjoyment and engagement with them, their gestural communication and language.”
* According to Rogers, over the course of several weeks, parents learn to build their children's repertoire of adaptive play and interaction skills, thereby reducing the use of challenging behaviors, such as tantrums, to attain goals and that the family interventions help bridge gaps in services and increase the number of hours each day the child is engaged in learning opportunities.
* The early diagnosis study is funded by the National Institutes of Health, Autism Speaks and the MIND. Institute. The early intervention study is associated with the National Institutes of Health through the Studies to Advance Autism Research and Treatment (STAART) Network and funded by the John and Marcia Goldman Foundation and Autism Speaks.
Parents And Their Children Also Interviewed On 60 Minutes
* Parents and their children who are participating in the studies were also interviewed for the “60 Minutes” program. They shared their insights on raising children with autism, along with their experiences in gaining access to services.
* Rogers said that many of the families of children with autism do not have access right away to enough intervention or to intervention services at all and that “...teaching parents to use effective techniques throughout their daily lives with their children helps parents begin intervention immediately after diagnosis and allows them to continue to do so even after their child enters other kinds of programs.”
* While having parents deliver play- and language-based interventions in the home has a long history, Rogers' study examines the effects of parent intervention very early in the disorder, by or before the child's 2nd birthday and as soon as autism symptoms are identified. Rogers says that children at this age may be even more responsive to interventions than older preschoolers, and parent training helps create a home environment that is "optimal for fostering the social and communicative development of young children with autism".
* The 60 Minutes segments includes an interview with parent Valerie Arias, a mother of four children, two who have been diagnosed with autism, and a third, a toddler named Haydn, who may or may not have the same disorder. At age 1 year, he failed the name-response test.
* Arias told Lesley Stahl that "I knew my son wasn't hearing me…[and] it’s not a hearing issue. He can hear."
* MIND Institute researcher Ozonoff however thought it was too early to make a certain diagnosis saying that "I would hate to cause the pain and anguish of having another child diagnosed on the [autism] spectrum and be completely wrong."
* However, 2 months later, Haydn, changed. At 14 months, he laughed, he showed interest in a toy and looked the researcher in the eye. He also exhibited some repetitive behavior, another sign of autism.
* Ozonoff tells 60 Minutes that this demonstrated "....some encouraging signs, but there are some mildly concerning signs" with the bottom line that Ozonoff probably won't be able to tell Valerie Arias if Haydn has autism for another 6 to 10 months.
* Arias in response says to 60 Minutes that , "I’m still leaning for optimism because…he's such a good boy…a good kid."
* Note: The MIND Institute says that the community can help by enrolling their children in research studies - see below for address and contact information
Background on MIND Institute and Contact Information
* The MIND Institute opened its doors in April 2003 and is one of the nation's largest autism related research and treatment centers.
* It was founded by a small group of fathers whose children have autism, including Dr. Lou Vismara, a senior staffer with the State Senate Rules Committee chaired by Senate President Don Perata, Rick Rollens, a parent activist and co-founder of Families for Early Autism Treatment (FEAT), an advocacy organization and Chuck Gardner, husband of Sacramento KCRA News anchor Sarah Gardner, who helped to supervise the construction.
* The mission of the institute is finding improved treatments, causes and eventually cures for autism, fragile X syndrome, Tourette syndrome, learning disabilities and other neurodevelopmental disorders.
* The MIND Institute says that the community can help speed that process by enrolling their children in research studies. For more information about MIND Institute research studies currently enrolling participants:
UC Davis MIND Institute
2825 50th Street
Sacramento, CA 95817
Toll-Free Phone: (888) 883-0961
Local Phone: (916) 703-0280
Website: www.mindinstitute.org
FOR MORE INFORMATION ABOUT THE 60 MINUTES PROGRAM
To watch (after the Sunday broadcast) a video or read a transcript of the autism segment, go to the CBS 60 Minutes website at: http://www.cbsnews.com/stories/2007/02/15/60minutes/main2483414.shtml
* You can also view now a short video clip by CBS News 60 Minutes correspondent Lesley Stahl about her report
* You can make a comment about the 60 Minutes segment on the CBS News 60 Minutes site (go to the same website address above)
* Address and phone of 60 Minutes
60 Minutes
524 West 57th St.
New York, NY 10019
(212) 975-3247
* Email address: 60m@cbsnews.com
* For Transcripts call: 1-800-777-TEXT
* For Videotapes call: 1-800-848-3256
SOME EFFORTS IN CALIFORNIA
* LEGISLATIVE BLUE RIBBON COMMISSION ON AUTISM - In California, Senate President Pro Tem Don Perata (Democrat - Oakland) authored SCR 51, which passed in 2005, that created a Legislative Blue Ribbon Commission on Autism to study issues including the early identification and intervention of Autism Spectrum Disorders and to also identify gaps in programs, services and funding related to the early identification, education and treatment and provide recommendations to close the identified gaps. The commission is required under SCR 51 to report its findings and recommendations to the Governor and to the Legislature no later than September 30, 2007. SCR 51 passed both houses of the Legislature overwhelmingly. In the State Senate it passed 39-0 with one senator absent or abstaining. In the Assembly it passed 75-1, with only Republican Assemblymember (now retired) Ray Haynes voting no.
AUTISM SPECTRUM DISORDERS INITIATIVE - created in 1997 under Gov. Gray Davis, it was expanded significantly as part of the 2006-2007 Budget by Gov. Arnold Schwarzenegger providing funding for training to clinicians and other professionals on already published best practices guidelines, developing and publishing "ASD Guidelines for Effective Interventions", establishing state and regional ASD Resource Centers, adding one ASD Clinical Specialist and one ASD Program Coordinator at each of the 21 regional centers and adding one clinical position at the Department of Developmental Services headquarters office to coordinate and facilitate the expansion of the Initiative.
OTHER EFFORTS:
* Various advocacy groups focusing on autism have been long active in promoting changes in interventions, supports and services, including Autism Education Network, Autism Society of California (and America), Families for Early Autism Treatment and many other groups (including family resource centers, empowerment centers, etc.. CDCAN will post website links to all these groups in the next few days.
* Legislation by former Sen. Wes Chesbro (SB 1270) is seeking to find new ways for providing certain types of non-residential supports and services for people with developmental disabilities, with a report due to the Legislature and Governor by May this year. The work is being coordinated by the California State Council on Developmental Disabilities, with a meeting scheduled on February 22. Go their website for more information at http://www.scdd.ca.gov/SB1270.htm
* The Association of Regional Center Agencies (ARCA) recently held a conference in San Diego called a "New Day" looking at different ideas for programs and support services.
* Other groups and organizations have come together to propose different or new ideas.
* CDCAN (California Disability Community Action Network) has organized in the past and future series of townhall telemeetings focusing on accountability of the rights of people with disabilities covering a range of services and supports.