MIND Institute

I have had a wonderful time discussing The Politics of Autism at the Autism Law Summit. Thanks to Lorri Unumb and Mike Wasmer.

At The Atlantic, Joceyln Wiener reports on The MIND Institute:

Nearly two decades after the men first imagined it, the MIND Institute counts among its ranks 55 of the world’s premier scientists working on autism and other neurological conditions. Most researchers are based in two neighboring buildings on campus; the rest are scattered in departments across the university. MIND has research grants and contracts that total about $25 million annually, the majority of them from the National Institutes of Health (NIH). The state of California kicks in about $2.7 million a year.

 Over the years, the institute’s researchers have made major discoveries in the fields of neuroscience, immunology, behavioral and language interventions, environmental toxicology and targeted treatments. “MIND and the investigators that are present there have been central to most of the significant developments within autism research within the last decade or so,” says Mathew Pletcher, interim chief science officer for the advocacy organization Autism Speaks.Their early goal for the institute—finding a ‘cure’ for their children’s autism—has become increasingly controversial.

What sets MIND apart, he and others say, has been its focus on collaboration: between experts from different disciplines, with other universities, and between researchers, clinicians and families. This type of integration was part of the institute’s founding vision.

Families have driven research fundraising for a host of childhood conditions. This is hardly surprising; nothing motivates parents like seeing their children suffer. In the 1990s, as autism diagnoses were accelerating but research funding remained sparse, parent-led research efforts emerged en force.

The small cadre of parents who formed MIND were especially well positioned. By the time their young sons were diagnosed with severe autism, many were community leaders in Sacramento, California’s state capital. They used their connections, influence, skill, and passion to amass funding and political support for the new institute. Their vision influenced everything from the organization’s research agenda to the color of its walls.

In the early years, these parents sat on grant evaluation panels, helping to decide which pilot research proposals would be funded. They pushed for the creation of the International Meeting for Autism Research, which today brings together more than 2,000 researchers, advocates and family members from around the world. But their early goal for the institute—finding a ‘cure’ for their children’s autism—has become increasingly controversial.

A Possible Cause of Some Cases

A release from the UC Davis MIND Institute:

UC Davis MIND Institute researchers have identified the specific antibodies that target fetal brain proteins in the blood of a subset of women whose children are diagnosed with autism. The finding is the first to pinpoint a specific risk factor for a significant subset of autism cases, as well as a biomarker for drug development and early diagnosis. The researchers have named autism related to these antibodies “Maternal Autoantibody-Related," or MAR autism.

The study found that the mothers of children with autism were more than 21 times as likely to have the specific MAR antibodies in their systems that reacted with fetal brain proteins, or antigens, than were the mothers of children who did not have autism. In fact, specific combinations of MAR antibodies were not found in the blood of mothers whose children were typically developing.

The research, "Autism-specific maternal autoantibodies recognize critical proteins in developing brain," is published online today in Translational Psychiatry, a Nature journal.

The study was led by principal investigator and immunologist Judy Van de Water, a researcher affiliated with the MIND Institute. Earlier studies by Van de Water and her colleagues found that women with certain antibodies in their bloodstreams are at greater risk of having a child with autism and that their children exhibited more severe language delays, irritability and self-injurious behaviors than did the autistic children of mothers whose blood did not have the antibodies.

“Now we will be able to better determine the role of each protein in brain development,” said Van de Water, professor of internal medicine. “We hope that, one day, we can tell a mother more precisely what her antibody profile means for her child, then target interventions more effectively.”

To identify the exact antigens targeted by the mothers’ antibodies, Van de Water and her colleagues conducted the research in Northern California using blood samples from 246 mothers of children with autism and of a control group of 149 mothers of children without autism to examine their reactivity with the candidate antigens.

Seven antigens were significantly more reactive to the blood of mothers of children with autism than to that of the control mothers. The study found that the mothers with antibodies that reacted with any one of these antigens, either individually or in combination with other antigens, were more than three times as likely to have a child with autism spectrum disorder.

Several combinations of antibodies in the blood from mothers of children with autism were not found in the control mothers’ blood. Nearly 23 percent of mothers of children with autism had certain combinations of autoantibodies against the target antigens, compared with less than 1 percent of mothers of children without the disorder.

Autism and Obesity

A new study linking autism and obesity is getting a great deal of media attention. CBS reports:

Autism is more likely to occur in children whose mothers were obese while pregnant, new research suggests.

The study, one of the first of its kind, involved about 1,000 California children, ages 2 to 5. Researchers affiliated with the UC Davis MIND Institute looked at their mothers' medical records and examined the association between obesity and autism. Women who were obese during pregnancy were about 67 percent more likely than normal-weight women to have autistic children, the study showed. Obese moms also faced double the risk of having children with other developmental delays.

Obesity isn't the only risk factor found for pregnant moms in the study. Researchers also looked at prevalence of gestational diabetes and found pregnant moms with diabetes had nearly 2 1/3 times the chance of having a child with developmental delays compared with healthy mothers. Although the proportion of diabetic mothers who had a child with autism was higher, the numbers did not reach statistical significance.

The study was published online in the April 9 issue of Pediatrics.

MIND Institute Billboards

In California, Capitol Weekly reports:

A statewide billboard campaign has been launched focusing on the UC Davis MIND Institute's efforts to develop improved treatments for children with autism spectrum disorders. 

The billboards depict a young child and state: "Making breakthrough discoveries in the causes of autism," and then provide contact information for the MIND Institute, which was founded in 1998 to coordinate research into autism and other disorders.

The billboards were made possible through the support of the California State Outdoor Advertising Association (CSOAA), which contributed $50,000 to the enterprise.

The collaboration received praise from California Senate President Pro Tem Darrell Steinberg, D-Sacramento. ...

The Sacramento-based UC Davis MIND Institute is an interdisciplinary research center where parents, community leaders, researchers, clinicians and volunteers collaborate to study and treat autism and other neurodevelopmental disorders. The institute has conducted major research into autism, Tourette syndrome, fragile X syndrome, chromosome 22q11.2 deletion syndrome and attention-deficit/hyperactivity disorder (ADHD).

Additional information about the institute, including previous presentations in its Distinguished Lecture Series, is available on the web at mindinstitute.ucdavis.edu.

Autism Research and Policy: A Family's Journey

Autism Research and Policy: A Family's Journey
Presenter: Louis Vismara, Ph.D., and Laurie Vismara Ph.D., BCBA-D
Affiliation: UC Davis MIND Institute
Date: August 5, 2011
Length: 1:16:13
Summary: Keynote Address from 2011 Summer Institute.

Recently posted on YouTube:

 

Research News

The New York Times reports (h/t John McNulty):

In the three years since her son Diego was given a diagnosis of autism at age 2, Carmen Aguilar has made countless contributions to research on this perplexing disorder.

She has donated all manner of biological samples and agreed to keep journals of everything she’s eaten, inhaled or rubbed on her skin. Researchers attended the birth of her second son, Emilio, looking on as she pushed, leaving with Tupperware containers full of tissue samples, the placenta and the baby’s first stool.

Now the family is in yet another study, part of an effort by a network of scientists across North America to look for signs of autism as early as 6 months. (Now, the condition cannot be diagnosed reliably before age 2.) And here at the MIND Institute at the University of California Davis Medical Center, researchers are watching babies like Emilio in a pioneering effort to determine whether they can benefit from specific treatments.

So when Emilio did show signs of autism risk at his 6-month evaluation — not making eye contact, not smiling at people, not babbling, showing unusual interest in objects — his parents eagerly accepted an offer to enroll him in a treatment program called Infant Start.

The treatment is based on a daily therapy, the Early Start Denver Model, that is based on games and pretend play. It has been shown in randomized trials to significantly improve I.Q., language and social skills in toddlers with autism, and researchers say it has even greater potential if it can be started earlier.

Time reports:

Too many tight connections in frontal-lobe circuits and too few long-distance links between the frontal lobe and the rest of the brain may cause some of the language, social problems and repetitive behavior seen in autism spectrum disorders, according to a new study published in Science Translational Medicine. The research links a variant of the CNTNAP2 gene to this particular type of rewiring in the brain.

The new findings, which used functional magnetic resonance imaging (fMRI) to measure the types and strength of connections between brain regions, could provide autism experts with some important clues for early intervention and treatment. (More on Time.com: Special Report: Kids and Mental Health)

"I think it is quite a beautiful study," says Kamila Markram, director of the Autism Project at the Brain Mind Institute of the École Polytechnique Fédérale de Lausanne in Switzerland, who was not associated with the current research. "What's new is that it brings the genetic data together with the functional brain activity and that is usually not done. Either people look at gene expression or they look at functional brain activity. To bring them together and relate them to say, 'That particular gene is responsible for the different connection pattern that one observes,' that's a unique research area and that's the beauty of the study."

At The Age of Autism, Katie Wright says:

... I want all autism families to know that the leaders of Department of Defense’s autism research program really get it. They are our allies in the fight for our children, rather than just another obstacle. The DOD strongly believes in stakeholder involvement.

The DoD actually WANTS parents’ opinion regarding their research choices. They INVITE a diverse body of Moms and Dads in sit on their grant committee panels. The DoD ENCOURAGES parents to fully participate in all scientific, clinical and treatment discussions. DoD EMPOWERS each stakeholder as a fully voting members of grant committees. The DoD ASKS families what they think of their previous research work and how they can better respond to the needs of people living with autism NOW.

Family Activism and MIND

Chuck Gardner writes at The Sacramento Business Journal about the origins of the MIND Institute. Like so many families, they started with worries that a pediatrician could not resolve:

Eventually, we found our way to a specialist in San Francisco and learned our son had a disorder called autism. We were told to go find a nice institution for our son and move on with our lives. Instead, on the trip home, we vowed to exhaust every avenue to find out what the proverbial “they” were doing to treat and cure autism.

We discovered there was no “they” for autism and further, there was no medical treatment, no cure. In fact, autism was considered to be such an impenetrable disorder that it received little funding from the National Institutes of Health, and thereby little attention from the research community.

Two years later, we came together with four other Sacramento families who believed that with a focused scientific effort, we could begin to see into the core biology that underlies autism. Our vision was to create a place where families, researchers, clinicians and educators would partner to mount an unprecedented effort to prevent, treat and cure autism and related disorders. We wanted families like ours to know there was a “they.”

Today there is a “they,” and thanks to the University of California Davis, it is the world-renowned MIND Institute. The team at the MIND Institute is achieving the vision set by the families by making the most significant discoveries in the history of autism and another poorly understood developmental disorder, fragile X syndrome.

When we approached UC Davis with our vision, we found a university that was not only open-minded but willing to take a risk that a few highly motivated families could deliver on that vision. With a “Field of Dreams” spirit, UC Davis built the MIND Institute and “they” came: researchers, clinicians and educators. All are focused on preventing, treating and ultimately curing autism and related disorders.

See here for an April 2006 article by Gary Delsohn providing more detail on MIND's origins.

Autism Clusters

The San Jose Mercury News reports:

Silicon Valley's concentration of autism cases has triggered a spate of theories, from neighborhood contamination to a "geek gene." But a team of researchers from the University of California-Davis has found one factor that unites this and nine other California clusters of cases of the developmental disability: parental education.  College-educated parents of autistic children are more likely to fight for a diagnosis — and seek the state-funded services that accompany it — than less-educated parents, according to the team.

See the MIND Institute release here.

Belief in a link between parental intelligence and autism goes back to Leo Kanner, who first described autism in 1943.  As Laura Schreibman explains in The Science and Fiction of Autism (Harvard University Press, 2005, p. 82):

[T]here may have been a sampling error in Kanner's first group of parents.  It is certainly more likely that an intelligent, well-educated parent would have been aware of Leo Kanner, the leading child psychiatrist of his day, and that a parent who could afford to take his child to Johns Hopkins University to be seen by Dr. Kanner must have had above-average financial resources.