The Early Years Break-out Session at the MAC Annual Meeting focused on what goals the Early Years group should focus on for the next year. The minutes are below.

Goals for the Early Years Sub-Committee

Through our collaborative efforts, the Early Years Subcommittee will develop and implement the following Strategies:

2008-2010
* Educate the local community about autism, and help provide information, referral and context for empirically evaluating controversial claims regarding causes and treatment
* Educate parents about developmental warning “flags”, and help them be effective advocates with their physicians and other service providers
* Educate physicians and other medical professionals about autism, to ensure prompt, effective screening, diagnosis and referral for treatment
* Ensure early, intensive intervention for children with autism before age three
* Ensure that we have a “system of care” in place for all people with autism, regardless of income level, ethnicity, language, and literacy
* Develop culturally sensitive strategies for outreach and education in diverse multi-ethnic and low income communities (for example, “mentores” – paraprofessional members of the community, who talk to parents; written information in English and Spanish; videotaped information in English and Spanish; pictorial information; website information in English and Spanish)
* Ensure continuity of care across the spectrum of age, ASD diagnoses/eligibility criteria, and systems of funding and care

2010-2011
* Continue to educate the professional community especially physicians and nurses on autism and related disorders and the importance of early screening and diagnosis
* Outreach to the Spanish community through bi-national health fairs
* Meet quarterly with other birth to 5 groups to improve collaboration to benefit consumers
* Continue to update the MAC website
* Link families with support groups hosted by MATRIX or other organizations in the community

Participant Input from Early Years Sub Committee- MAC Annual Meeting
March 6, 2010

• A therapeutic component for preschoolers with EBD/SED
• Explore why eligibility changes from ASD to Speech & Language delays when transitioning from Part C to Part B
• Explore creative ways to link service providers to families and families to providers
• Insurance issues
• Outreach to Waldorf and charter schools

Joint Meeting of the
Birth-to-Five Members of various Roundtables

March 11, 2010

AAA-California Automobile Association
99 Smith Ranch Road, San Rafael 94903

Subcommittee Members in Attendance: Susanne Kreuzer, Easter Seals, Stephanie Stein, MATRIX; Meghan Johnson, Easter Seals, Phyllis Ring, Easter Seals, Gail Cavello, Blind Babies, Doug Lipinski, SLP, Alyea Sandovar, MA, JFCS, Diana Hill, FSA, Gloria Droquett, CAM; Joan Troppmann, Headstart, Kathy Truax, FSA, Linda Mariscal, Health and Human Services, Pam Doer, CPS, Linda Cimoli, MCOE; Katrina Ferreyra,Coordinator MAC; Minal Doshi, GGRC, Wyoming Irwin, Early Start MCOE, .

Member updates:
• Katrina and Susanne spoke of about the MAC Annual meeting to be held March 6, 2010 at Hollis Hall. Key note speaker was David Amaral, PhD from the M.I.N.D. Institute. Approximately 60 individuals were in attendance

Minutes from Last Meeting:

Susanne shared information explaining the various birth to 5 Roundtables that meet in Marin and what their purposes are information was distributed about the various activities that each roundtable has been working on.

Early Start Roundtable: Presented a Speaker series in the fall on various topics related to Early Intervention. The program was held at the Wellness Center in San Rafael. Some of the presentation were videotaped. Spoke about he history of the Early Start Roundtable

Special Needs/Mental Health Roundtable: Presented the history of the Special Needs/Mental Health Initiative funded by First 5 Marin. Spoke about funded partners and distributed information regarding the program.

MAC Early Years Subcommittee: Presented information on how the MAC was established and the subcommittees developed. Information regarding the vision and goals of the Early Years Subcommittee was distributed as well as information on the MAC Website.

After some discussion it appears that it would be helpful for the joint groups to meet on a quarterly basis and work more closely together in doing outreach coordination and presentations in the community.

The group felt that first priority was to share information and be better at linking ourselves together. Consensus determined that we would focus on two areas first
1. Stephanie from MATRIX suggested that a Tab for the Early Intervention programs could be put on their website to link families who have young children with special needs to each other and programs.
2. Explore the process of developing a yahoo email group for the professionals to share information. Katrina and Susanne would investigate

Next Joint Meeting: June 10, 2010 12-1:30
Please join us! Send an email to kferreyra@lifehouseagency.org if you would like to get on the early years mailing list!

Thanks to all who attended the March sub-committee meeting!

March 2010/ Marin Autism Youth Sub Committee Minutes

Participants: Lynn Wasley/Matrix, Barry Benda/Lifehouse, Katrina Ferreyra/MAC Coordinator, Jordana Perman/parent, Jennifer/parent, Karen Kaplan/ AutismConsultant

Introductions: Each participant introduced themselves and then shared any current events or resources.

Barry Benda from Lifehouse announced once again about their expanded after school recreational program for teens and young adults on the spectrum. Barry encouraged families to connect with Lifehouse as sign ups have already started.

Karen Kaplan passed out the current Autism Lecture Series flyer and encouraged everyone to attend the April 6th lecture on addressing Post Secondary issues at Marin County Office of Education. She also passed out the September 11th flyer on the Autism Information & Resource fair at Dominican University. There will be 12 workshops focused on core needs of people with ASD and a resource fair filled with service providers from early intervention, youth, transition years, residential, vocational and postsecondary programs as well as therapists from all specialty areas.

Discussions on Current Projects:

1) Safety and our children: Karen announced that the DVD for first responders had been completed and was now in the hands of our first responder trainers. The committee thought it would be a good idea for letters to be sent to the Marin County trainer to encourage the use of this DVD. Perhaps MAC, Matrix, Easter Seal, Dedicated to Special Education, Marin County Office of Education and others could send a letter relating the importance of using this DVD in our county. Karen will connect with Josh Todd the trainer for our area to find out where letters could be sent and perhaps his plan to be using the DVD.

2) Medical Practitioners Education on Resources: The committee reviewed the current list of medical practitioners and noticed that family practitioners were left out. Karen agreed to connect with Kat Vaughn who put the list together and ask if this category could be added by the next committee meeting.
Katrina announced that Easter Seals was holding a medical practitioner workshop very soon and perhaps our resource guide could be made available at that workshop. She is to check into that. Jennifer volunteered to be present at the workshop if needed.
The committee suggested a flyer be put together identifying the MAC directory web site and some very specific local, state and national resources on ASD and to see that all practitioners on our list get a flyer to post in their offices. Our committee will discuss this further at the next meeting.

3) Making recreation and other resources known to families: The committee discussed best ways to ensure that families are getting ideas and suggestions on resources in our community. It was suggested that perhaps a MAC newsletter could be developed quarterly with a column put out by families providing ideas, tips and suggestions on resources (dentists, friendly restaurants, summer programs, doctors, salons, how they were able to get an agency to accept their son/daughter etc.)

4) Mike Gardner was not present to report on Autism Survey being obtained by his teachers and Theresa’s teachers in MCOE. Once this Survey is completed our committee can brainstorm on how to offer identified training to teachers/instructional aides/therapists in the schools.

Additional Announcements: Karen Kaplan announced that she will be unable to continue leading the youth sub committee but will continue to attend. She has taken a position as Executive Director of Wings Learning Center, a school for ASD children and teens. MAC is looking for someone to step up after Karen has been leading the group for over 2 years. Please connect with Katrina if you are interested or know of someone.

Next Autism Youth Sub Committe Meeting: April 27th from 9:30 to 11:00 at California Auto Association on Smith Ranch Road, in San Rafael on the 2nd floor.

The Autism Society of America has put together a summary of how the proposed health care legislation affects individuals with ASD. See their article of health care reform.

Take a look at this program near Chicago for developing employment opportunities for adults on the spectrum. http://www.aspiritech.org/

—– Forwarded Message —-

http://online.wsj.com/article/SB20001424052748703422904575039351632663996.html

Why is a child born in northwest Los Angeles four times as likely to be diagnosed with autism as a child born elsewhere in California?

Medical experts have pondered for years why autism rates have soared nationwide, and why the disorder appears to be much more prevalent in certain communities than in others. Now, some recent studies that zero in on California may shed some light on these baffling questions.

Researchers from Columbia University, in a study published in the current Journal of Health & Place, identified an area including West Hollywood, Beverly Hills and some less posh neighborhoods that accounted for 3% of the state’s new cases of autism every year from 1993 to 2001, even though it had only 1% of the population.

Another recent study, from the University of California, Davis, published in Autism Research, also found high rates of autism in children born around Los Angeles, as well as nine other California locations. Autism, usually diagnosed before a child is 3 years old, is a developmental disorder characterized by impaired social interaction and communication and repetitive behavior.

Both of the California-based studies suggest that local environmental or social factors are driving the high autism-diagnosis rates. And they conclude that childhood vaccinations—which some people fear is a factor behind rising autism—are not to blame. Otherwise, diagnoses of the disorder would be more evenly dispersed, they say.

The studies also disagree on some points. According to the UC Davis study, greater concentrations of autism occur in communities where parents are highly educated, which could mean they have more awareness of autism and access to treatment. By contrast, the Columbia researchers discount the role of educational levels. They believe that social influences, such as shared information about diagnoses, doctors and services, are largely responsible for the high rates they found in parts of Los Angeles.

In Los Angeles itself, residents have a variety of explanations for the high autism rates, ranging from a family’s affluence and the activity of autism-advocacy groups to past air and water pollution.

James McCracken, a child psychiatrist at the UCLA Center for Autism Research and Treatment, says families often have to fight with state bureaucracies to be deemed eligible for services, and some spend thousands of dollars for private evaluations. “You can see the possibility for inequity according to social advantage or cultural background,” he says.

But Moira Giammatteo, a San Fernando Valley mother with a 12-year-old autistic son, doesn’t believe that affluent, educated parents are gaming the system. “It’s not like people think, ‘get this label and you can get services.’ Nobody wants this diagnosis; most parents are in denial,” she says.

Some of the increase in autism rates in past decades is due to changing definitions. Until the early 1990s, diagnoses of autism were rare and included only children with low I.Q.s, who were deeply withdrawn and had very minimal language skills. In 1994, diagnosticians adopted the term autism spectrum disorder (ASD), which also includes children with impaired social skills but not necessarily severe intellectual disabilities or language delays.

On average, one in 110 American 8-year-olds had an autism spectrum disorder in 2006, an increase of 57% since 2002, according to a December report from the Centers for Disease Control and Prevention. Some parts of the U.S. are seeing much higher rates than others: Metropolitan Phoenix, for example, has twice the prevalence as northern Alabama.

Whether those differences reflect actual higher risk in different regions, differences in awareness among local residents, or simply variations in record keeping is something the CDC is trying to untangle.

“We still don’t know what causes autism, and we don’t know a lot of the underlying factors, so we can’t rule out the possibility that there are differences in the distribution of risk factors.” says Jon Bai, a CDC epidemiologist.

Theories abound to explain the steep increase that has occurred in recent years. Some experts attribute it to genetic changes within families. But others say genetic changes wouldn’t occur so quickly and instead they blame environmental toxins or childhood vaccinations.

Another possible explanation: Greater awareness of the disorder, and programs in some parts of the country that can help children regain skills, may make parents more willing to have their children diagnosed.

“But awareness can only go so far” to explain the rising levels of autism, says Dr. Baio. “We are still identifying more children with autism, in all levels of severity, than ever before, which is why this continues to be a perplexing and urgent concern.”

Around the U.S.

Nine out of every 1,000 8-year-olds were diagnosed with autism spectrum disorder as of 2006. But rates vary widely in the survey areas, located in 11 states, that the CDC monitors. (Prevalence per 1,000):
Alabama 6.0
Arizona 12.1
Colorado 7.5
Florida 4.2
Georgia 10.2
Maryland 9.2
Missouri 12.1
North Carolina 10.4
Pennsylvania 8.4
South Carolina 8.6
Wisconsin 7.6

Source: CDC’s Autism and Developmental Disabilities Monitoring Network

In California, children with autism or ASD must be “substantially developmentally disabled” to qualify for services from the state’s Department of Developmental Services (DDS). The two recent studies used data from the DDS in their research. The studies looked at where the children with autism were born, not where they were diagnosed, so that their findings wouldn’t be skewed by families moving into the areas.

As part of their work, the Columbia researchers constructed a “SimCity map of California,” referring to the city-building simulation game, says Peter Bearman, the lead investigator. They assembled data pinpointing not just where children with autism were born and diagnosed but also all the parks, day-care centers, doctors’ offices, autism-advocacy groups and other gathering places.

The result: significantly higher occurrences of autism in a large area of Los Angeles stretching from Santa Monica in the west to beyond Burbank in the east, and from El Segundo in the south to the San Fernando Valley in the north. The epicenter of the autism cluster: areas around Hollywood.

Dr. Bearman says he believes social influences are the leading cause for the high autism rates in Los Angeles, although the researchers continue to examine environmental issues.

Other studies have shown that older parents run a greater risk of having an autistic child. But when the Columbia researchers adjusted the Los Angeles cluster to factor out parental age, the higher levels remained. Dr. Bearman says he believes the high levels will also remain after the data are adjusted for education levels, socio-economic status and other demographic characteristics in future studies.

In addition to parts of Los Angeles, the UC Davis study located clusters around Santa Ana, San Diego, San Francisco, Santa Clara, Fresno and Stockton where children had at least a 70% greater chance of being diagnosed with autism than in surrounding areas.

The Davis researchers believe their findings can be explained solely by parents’ educational levels—by adjusting the data for educational levels, the discrepancies in autism rates virtually disappeared.

“There are many ways that you can see that a highly educated person will be more successful at getting the diagnosis,” says Karla Van Meter, the study’s lead author. “If I’m more educated, I might have different expectations for my child,” she says.

Corrections & Amplifications
An earlier version of this article incorrectly spelled Jon Baio’s surname.

Write to Melinda Beck at HealthJournal@wsj.com

Hello Marin Autism Collaborative Members

Great News

I just received a copy of the completed DVD on Peace Officer Standards and Training for ASD in the mail.

Over 600 law enforcement agencies in CA will be receiving a copy of this.

It is now important for all of us to ask our Law Enforcement trainers to choose this DVD when training officers. They have many DVD’s to choose from.

It is now important for all of us to help our trainers understand the need in our county for this training.

I am sure we can identify ways to help our trainers see how very important this training is. It is up to us to rally for our children, teens and adults.

When officers understand our children’s needs they also understand many others with developmental learning challenges

This is another great accomplishment of the California Autism Blue Ribbon Commission!!!!

Karen Kaplan
Karensupportsu@comcast.net
415 497-3751

Autism Research Update
________________________________________

MIND Institute: Autism’s earliest symptoms not evident in children under 6 months

Condition is characterized by a slow decline rather than an abrupt loss of skills, study says

A study of the development of autism in infants, comparing the behavior of the siblings of children diagnosed with autism to that of babies developing normally, has found that the nascent symptoms of the condition — a lack of shared eye contact, smiling and communicative babbling — are not present at 6 months, but emerge gradually and only become apparent during the latter part of the first year of life.

Researchers conducted the study over five years by painstakingly counting each instance of smiling, babbling and eye contact during examinations until the children were 3. They found that by 12 months the two groups’ development had diverged significantly. Intentional social and communicative behavior among children developing normally increased while among infants later diagnosed with autism it decreased dramatically. The study is published online early and will appear in the March issue of the Journal of the American Academy of Child & Adolescent Psychiatry.
“This study provides an answer to when the first behavioral signs of autism become evident,” said Sally Ozonoff, the study’s lead author, a professor of psychiatry and behavioral sciences and a researcher with the UC Davis MIND Institute. “Contrary to what we used to think, the behavioral signs of autism appear later in the first year of life for most children with autism. Most babies are born looking relatively normal in terms of their social abilities but then, through a process of gradual decline in social responsiveness, the symptoms of autism begin to emerge between 6 and 12 months of age.”
Autism is a pervasive developmental disorder of deficits in social skills and communication, as well as in repetitive and restricted behaviors, with onset occurring prior to age 3. Abnormal brain development, probably beginning prenatally, is known to be fundamental to the behaviors that characterize autism. Current estimates place the condition’s incidence at between 1 in 100 and 1 in 110 children in the United States.
Children with a sibling already diagnosed with autism are known to be among those at greatest risk of developing the disorder. The current study included 25 high-risk children who met criteria for autism at 3 years of age, matched with 25 low-risk peers who were developing normally. It was conducted at the MIND Institute and the University of California, Los Angeles. The sole inclusion criterion for the high-risk group was having a sibling with autism; low-risk participants had to have been born after 36 weeks gestation and have no autistic family members.
The children’s development was evaluated at 6, 12, 18, 24 and 36 months of age using a series of widely implemented diagnostic tools, including the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). Examiners were not told which babies were at high- or low-risk when evaluating the participants’ development.
The researchers found that there were few discernable differences between the two groups at the outset but that after six months, 86 percent of the infants who developed autism showed declines in social communication that were outside the range for typical development. “After six months,” the study found, “the autism spectrum disorder group showed a rapid decline in eye contact, social smiling, and examiner-rated social responsiveness.” Group differences were significant by 12 months in eye contact and social smiling and all other measures by 18 months, the study found.
The study is notable because of the accuracy and precision of its prospective methodology, assiduously recording exact numbers of social and communicative behaviors during lab visits. Previously, researchers have constructed evidence of autism’s earliest manifestations by interviewing parents about when they believed their children’s symptoms first arose or by reviewing home movies for clues to when children begin exhibiting symptoms of autism.
“Until now, research has relied on asking parents when their child reached developmental milestones. But that can be really difficult to recall, and there is a phenomenon called the “telescoping effect” where people usually say that they remember something happening more recently than when it occurred,” Ozonoff said. In addition parents frequently will turn off the video camera when their children are behaving poorly — precisely when autistic symptoms may appear.
Ozonoff said that the study provides a deeper understanding for parents, caregivers and health-care providers and for future research of the developmental trajectory for very young children with autism.
“We need to be careful about how we screen, and we need to know what we’re looking for,” Ozonoff said. “This study tells us that screening for autism early in the first year of life probably is not going to be successful because there isn’t going to be anything to notice. It also tells us that we should be focusing on social behaviors in our screening, since that is what declines early in life.”
“This study also found that the loss of skills continues into the second and third year of life,” she said. “So it may not be adequate, as the American Academy of Pediatrics currently suggests, that providers screen for autism twice before the end of the second year. Autism has a slow, gradual onset of symptoms, rather than a very abrupt loss of skills.”
“Screening may need to continue into the third year of life, since symptom emergence takes place over a long time. If a child starts exhibiting a declining trajectory and a sustained reduction in social communication we want to refer them into therapy, especially if they are at risk,” Ozonoff said, “even before we might be able to make a definitive diagnosis.”
Ozonoff said that the study does not address the etiology of autism or causality. In this study, the infants who participated were at high risk due to having strong family histories of autism, suggesting that genetics plays a major role in the later autism diagnoses, despite the fact that their symptoms were not apparent at birth.
The study was funded by grants from the National Institute of Mental Health of the National Institutes of Health.

U.C.Davis MIND Institute
________________________________________

Extremely premature babies show higher autism risk

Researchers found that of 219 children born before the 26th week of pregnancy, 8 percent met the criteria for an autism spectrum disorder (ASD) at age 11. That compared with none of 153 classmates who were born full-term and included in a comparison group.
This latest study shows not only a substantially heightened risk among children born very preterm, but also points to which of these children are most likely to be affected.
“The study shows an increased frequency of ASD, but it is mainly among children with other disabilities, such that the risk of it developing in children with no other problems is very low,” explained Dr. Neil Marlow, a professor of neonatal medicine at University College London, in the UK, and one of the principle researchers on the study.
“We know that very preterm babies’ brains develop differently to those of full-term babies after birth, and that this is associated with a high frequency of cognitive problems in childhood,” Marlow told Reuters Health in an email.
The impaired brain development in these children may account for the high ASD risk, the researchers speculate. And that, they say, means that autism may arise via different mechanisms in extremely preterm children compared with those who were born full-term — for whom, Marlow noted, genetics are believed to be key.
For parents of children born extremely preterm, the findings mean that they should be aware of the possibility that their child’s learning or behavioral issues could be indicative of an ASD.
“Where a parent is worried about learning or behavioral problems in their very premature baby,” Marlow said, “they should seek advice from a professional to see what the nature of these problems is.”

Full Article, Reuters
________________________________________

Hormone-infused nasal spray found to help people with autism
The study, involving 13 adults with either a high-functioning form of autism or Asperger syndrome, a mild form of the disorder, found that when the subjects inhaled the hormone oxytocin, they scored significantly better on a test that involved recognizing faces and performed much better in a game that involved tossing a ball with others.

“This is the first study that looked at whether oxytocin has an effect on social behavior, which is a major deficit in autism,” said Angela Sirigu, who directs the National Center for Scientific Research in France and led the study, published online by the Proceedings of the National Academy of Sciences. “It looks like it could be very helpful.”
While cautioning that more research is needed on children and additional patients to make sure oxytocin is safe and effective, advocates for families with children with autism welcomed the findings.

http://www.autismspeaks.org/press/baker_camp_program.php

Here might be a way for programs to access dollars to provide scholarship camp spots.

Karen Kaplan

As we start the New Year, I am very pleased to announce the new website for the Autism Research Program at Kaiser Permanente Northern California: www.autismresearch.kaiser.org.

We’ve designed the site to provide an overview of the many autism research projects underway at the Division of Research and to be a resource for families and providers. Our intent is to keep the site timely and lively so that parents, providers, and researchers can stay current and connected to the most up-to-date news on autism research at Kaiser Permanente. We also provide many downloadable materials containing general information about autism and describing the system for support and services at Kaiser Permanente Northern California.

We believe that the path to prevention starts with research. Please help us raise awareness of the opportunities for families to participate in research by adding a link on your organization’s site to the Kaiser Permanente Autism Research Program website. We are eager to share resources and work together to advance the scientific understanding of autism spectrum disorders.

We welcome your comments and questions about the website or our program. Please contact us at autism.research@kp.org.