Sobering new study by Easter Seals describes the state of disabled adults in the U.S.

| November 7, 2010

Easter Seals focuses on many disabilities and especially Autism Spectrum Disorders. Their Living With Disability Study paints a startling picture of the life-long challenges surrounding everyday life and future concerns for parents of adult children with disabilities and adults with disabilities.

Many parents worry their adult children’s basic needs for employment, housing, transportation, social interactions, recreation, healthcare and financial security will not be met:

  • Only 11% of parents of adult children with disabilities report their child is employed full time.
  • Just 6 in 10 parents of adult children with a disability rate their child’s quality of life as excellent or good (61%), compared to 8 in 10 parents of adults without a disability (82%).
  • Huge gaps exist in parents of adults with disabilities’ assessment of their child’s ability to manage their own finances (34% vs. 82% parents of adults without disabilities) and have the life skills necessary to live independently (30% vs. 83% parents of adults without disabilities).
  • Nearly 7 in 10 adults with disabilities (69%) live with their parent(s) or guardian; only 17% live independently compared to more than half of adult children without disabilities (51%).

These are the very concerns that we hope Autistry Studios can help address for individuals and families living with ASD and other related communication/social disorders.

Talk at North Bay Regional Center in Santa Rosa

| November 2, 2010

Janet and I are really happy about the presentations we did this Tuesday and Wednesday for the North Bay Regional Center about Building Social Skills and Networking for People with ASD. Here’s a link to the slides we used.

Best Practices slide deck

If you attended, please comment on any resources you’d like us to add and I’ll expand this post.

Symposium: Making healthy babies, raising healthy children

| November 10, 2009

RyderEventWhere: UC Berkeley Art Museum Theatre, 2625 Durant Ave. Berkeley, California
When: Saturday, November 21, 2009, from 9 am to 4 pm

Sponsors: SageFemme, Ryder Foundation, Midwifery Today, Autism Recovery Consortium

Tickets: $60 until 11/20 then $75 and may be purchased through Everbrite: http://makinghealthybabies.eventbrite.com

The 2009 CIA World Factbook ranks the USA 45th among nations for infant mortality— the worst among all industrialized countries. The autism rate in our country is now 1 in 100.

How we can understand and take appropriate steps to ensure healthy mothers, births and children? Take a unique look at the entire system that affects our future generations- a mother’s current environment, the birth environment and your child’s toxic world.

This symposium brings together scientists, doctors, researchers and professionals for a compelling conversation about environmental influences around birth and childhood. Featuring plenary speakers, panels, audience questions, and film clips.

Revolutionary new software will also be introduced that will help parents assess the risks our children may encounter from the environment before birth, at birth and during childhood. Our three part program will make clearer to attendees what they should know about environmental health, their world, and how it affects them and their children.

Session One: Preparing for Childbirth
Sharyle Patton, Director, Commonweal Health and Environment Program, presents several new biomonitoring studies documenting the ubiquity and complexity of chemical and environmental exposures that people experience every day, and how those exposures could influence pregnancy and the health of our children. Exciting new software will be introduced which gives parents-to-be the opportunity to evaluate environmental exposures, and the effect they may have, so lifestyle changes can be made to ensure healthier outcomes for families and children. This session concludes with an expert panel, including Dr. Joanne Perron, OB/GYN, who will correlate the environmental science with her own personal experience; Julie Matthews, Certified Nutrition Consultant, who will describe the best diet for pre-pregnant women.

Session Two: The Birth Experience
Robbie Davis-Floyd, PhD, medical anthropologist and author of eight books including Birth as an American Rite of Passage, presents a brief history of birth in the USA. This presentation will focus on women’s ideas and cultural values about childbirth. The session concludes with a panel consisting of Elizabeth Davis, a Certified Professional Midwife, who will touch on an integrated view of birth, family and ecology and natural birth icons, Dr. Marshall Klaus, Pediatrician and Neonatologist and Phyllis Klaus C.S.W., M.F.C.C. who understand what care and support a woman needs at birth. A new film, produced by Diana Paul, of Sage Femme, will be premiered to introduce this session.

Session Three: Healthy Childhood
Dr. Andy Wakefield, academic gastroenterologist and Director of Thoughtful House Center for Children in Austin, Texas, presents new information and good news about the treatment and prevention of autism (now affecting 1 in 100 children). A ChARMtracker demo will be featured, launching this ground-breaking web-based treatment tracking software for autism. The session will conclude with a panel consisting of Pramila Srinivasan (ChARM founder), and Kenneth Bock (an integrative family practitioner whose practice is the beta site for the ChARMphysician product) and Julie Matthews, Certified Nutrition Consultant, who will describe the best diet for a healthy child. Clips from Elizabeth Horn’s film “Finding the Words” will introduce this session.

Audience questions and answers will be taken at the end of each session.

Master of Ceremonies
Carolyn Raffensperger
, M.A, J.D., Executive Director of Science and Environmental Health Network, is an environmental lawyer specializing in the fundamental changes in law and policy necessary for the protection and restoration of public health and the environment. Carolyn coined the term “ecological medicine” to encompass the broad notions that both health and healing are entwined with the natural world. She emphasizes ecological integrity and guardianship for future generations in her work.

ABOUT THE SYMPOSIUM ORGANIZERS

Maureen Block is former in-house counsel at a New York investment bank, and founder of The Ryder Foundation whose mission is to raise money for organizations that make a difference in the lives of children with autism. Ms. Block is the mother of a child who has recovered from autism.

Elizabeth Horn co-founded the Autism Recovery Consortium to support continued research into autism recovery. Along with Dr. Martha Herbert of Harvard and Michael Lerner of Commonweal, she co-founded the autism group that meets regularly at Commonweal called NPART (New Paradigms for Autism Recovery and Treatment). She produced a documentary entitled “Finding the Words” about children recovering from autism that has now been broadcast in over 30 countries, and recently collaborated on the creation of ChARMtracker software (treatment management software for children with ASD).

Diana Paul is a filmmaker and Founding Director of Sage Femme, a non-profit organization that produces the Motherbaby International Film Festivals and promotes and educates about EcoBirth.

Molly Arthur, who has had 30 years of working with start-ups and growing networks in her professional sales career, is the Managing Director of Sage Femme. Molly is also the inspiration behind EcoBirth, a philosophy linking birth and the environment.

EcoBirth is the study of and practice in Deep Womb Ecology. It links and relates the environments of Birth and Earth. EcoBirth recognizes that the mental and physical care surrounding Birth is an indicator of how we care for the Earth. Since our primary provider and first home is the Earth, EcoBirth advocates cherishing her as a means of protecting our mother’s wombs, our baby’s births and our children’s futures.

David Kirby: seven studies to watch

| June 15, 2009

David kirby in Huffington Post comments on Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith’s (R-NJ) calls on HHS to fund comparative studies on vaccinated vs. un-vaccinated children but i think the most interesting part of the article is tacked on at the end:

Seven studies to watch

APPROVED STUDIES:

1) The National CADDRE Study — This 5-year project of the CDC’s Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network will “help identify what might put children at risk for autism,” the CDC says. Among those risk factors: “specific mercury exposures, including any vaccine use by the mother during pregnancy and the child’s vaccine exposures after birth.”

2) The National Children’s Study – This HHS-EPA joint effort will investigate “the effects of environmental influences on the health and development of more than 100,000 children across the United States,” including autism. As part of their work researchers will track medical records, including vaccinations and their impact on neorodevelopment.

3) The Early Autism Risk Longitudinal Investigation (EARLI) – This network of NIH agencies (NIEHS, NICHD, NIMH, NINDS) and affiliated sites will follow 1,200 pregnant women who already have a child with autism, to identify the “earliest possible environmental risk factors and their interplay with genetic susceptibility during the prenatal, neonatal and early postnatal periods.” Potential risk factors in the study include vaccines, thimerosal, and heavy metals.

RECOMMENDED STUDIES

On June 2, 2009, the Federal Government’s National Vaccine Advisory Committee voted unanimously to recommend a sweeping list of vaccine safety studies, including four related to vaccines and autism. The CDC had previously proposed studying autism as a “clinical outcome” of vaccination, and NVAC concurred. The document can be viewed at:

4) Study the Feasibility of Comparing Vaccinated, Unvaccinated and Alternatively Vaccinated Children – NVAC recommended asking an expert panel, such at the Institute of Medicine, to weigh in on the strengths, weaknesses, ethical issues and costs of studying and comparing vaccinated, unvaccinated, and “alternatively vaccinated” groups of children for a number of disorders – including autism. Prospective clinical trials, where children would be randomized into vaccinated and placebo groups, would be unethical.

But NVAC suggested one publicly submitted idea to conduct an “observational study” looking at, “natural variation in vaccination schedules, including some children where vaccination is declined through parental intent.”

5) Study Vaccine-Mitochondria-Autism Links – “Recent developments around mitochondrial dysfunction reinforce the importance of studies of vaccine adverse events in rigorously defined subsets of the ASD spectrum,” the NVAC wrote. The rate of mitochondrial dysfunction in autism has been estimated at somewhere between 7%-to-30% of all ASD children. “Mitochondrial dysfunction carries an established risk of brain damage subsequent to infectious disease,” the NVAC wrote. “Thus, a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to live virus vaccination.”

6) Study Vaccines and Regressive Autism – “In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism” the NVAC wrote. Estimates of ASD regression range from about 15 to 50% of all ASD cases, depending on the definition used. “Regressive autism does fit the recommendations of the IOM (immunization) committee for further research in rigorously defined subsets of ASD,” the NVAC said. Such studies might entail, “prospective vaccination response profiling in siblings of children with regressive ASD, a subpopulation who are at higher risk.”

7) Study Vaccine Injuries and the Risk of Autism - Another autism subpopulation that should be included in vaccine studies is what the NVAC called “the intersection of ASD cases with (clearly defined vaccine outcomes) such as fever, febrile seizure, or hypotonic-hypo-responsive episode (HHE).” Do these adverse effects correlate with ASD? “It would be worthwhile to assess,” the NVAC wrote. “On a molecular level, it might be feasible to compare ASD cases with history of adverse events following immunization against cognitively normal controls with a similar history of adverse events, to assess whether there are significant differences in immune response profiles between groups.”

David Kirby writes about NIH EARLI effort to study potential environmental causes of ASD

| June 11, 2009

In the Huffington Post today David Kirby writes

US Government officials are finally getting serious about studying all potential environmental factors in autism, and I for one applaud them heartily for leaving no etiological stone unturned.

Kirby is writing about the Early Autism Risk Longitudinal Investigation or EARLI study. See their website.

See NIH Autism Study to Leave No Stone Unturned at Huffington Post.

As someone trained to be a scientist it has always been infuriating to me how little is understood about the current increase in the number of children with ASD. It looks like there is finally some momentum in the right direction. I increasingly feel there is some bad combination of genetic tendencies with environmental triggers.

Is ASD due to a “super male” brain?

| June 9, 2009

In the June 22 issue of Forbes is an article by Elisabeth Eaves about Simon Baron-Cohen (academic brother of comedian Sasha Baron-Cohen) which discusses his research and his idea that the Autistic Spectrum Disorder (ASD) brain is an extreme version of the male brain.

Baron-Cohen and his researchers feel the currrent incidence of ASD is 156 per 10,000 (or 1.56 %).

Today the strongest evidence [of a cause for ASD] supports a genetic theory, most likely with an additional environmental factor that interacts with the risk genes.

Forbes.com: The Extremely Male Brain

Researchers Discover Mothers of ASD Teens Stressed Out – doh!

| June 6, 2009

This is one of those articles that makes me wonder what the heck researchers think they’re going to find when they start their projects? Kind of like doing a study to discover the sky is blue, or that water is wet!

Breaking News: Mothers of ASD Teens are Stressed Out

Studies continuing on Vaccine-Autism link

| June 5, 2009

I don’t know whether vaccines are related to any increase in cases of Autistic Spectrum Disorder (ASD) seen in recent years. I agree there are very probably genetic factors but I feel there must also be some sort of environmental trigger at play as well.

Is there really an increase in ASD? There is definitely an increase in ASD diagnoses (see Epidemiology of autism at Wikipedia). What I have seen in my lifetime in the SF Bay Area is that when I was a kid you saw mainly Down Syndrome and children with birth defects in Special Education classrooms — no autistics.

Autism was rare.

Here in Marin today we easily fill classrooms with autistic kids and I do not mean edge cases but full blown autistic kids.

Many believe that the way vaccines are administered, and how that has changed over the years, could be one of the environmental factors affecting the rate.

David Kirby’s article at Huffington Post today Top US Panel: Some Vaccine-Autism Research is “Appropriate,” “Worthwhile” and “Warranted” is an excellent and relatively even tempered discussion of the current thinking and research directions into the possible Vaccine-Autism link.