MIND Institute

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The UC Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a research and treatment center affiliated with the University of California, Davis, with facilities located on the UC Davis Medical Center campus in Sacramento, California. The institute is a consortium of scientists, educators, physicians and parents dedicated to researching the causes of and treatments for autism spectrum disorders, fragile X syndrome, and other neurodevelopmental disorders. The director of the MIND institute is Dr. Leonard Abbeduto. [1]

Contents

Origins

Parents of autistic children led the drive to raise funds for the cause, anticipating the institute could become the premiere autism research institute in the world. Among the parents behind the institute are Chuck and Sarah Gardner, whose son Chas has been diagnosed with autism. Chuck is a Sacramento area building contractor and co-founder of the institute along with his wife, Sarah, a television anchorwoman for Sacramento (KCRA 3).[ citation needed ]

The institute's largest contribution came from the California State Legislature, which provided $34 million to the institute for autism research. The efforts enabled construction of the institute's facility at the UC Davis Medical Center campus in Sacramento. After the major funding from the State, Rick Rollens, the former Secretary of the California State Senate and one of the leaders in the effort to create the institute, said the National Institutes of Health (NIH) was funding genetic-oriented research into autism, and that the MIND Institute was created by parents demanding that scientists look at other causes.[ citation needed ]

Interdisciplinary research teams

The MIND Institute brings together experts in fields as diverse as molecular genetics and clinical pediatrics, using a multidisciplinary approach to treating and finding cures for neurodevelopmental disorders.

David G. Amaral is the research director of the MIND Institute and a professor in the Department of Psychiatry and the Center for Neuroscience, a neuroscientist who studies the organization of memory systems in the brain. Sally J. Rogers is a specialist in developmental psychology and professor of psychiatry and behavior science for the institute. Jacqueline Crawley is a behavioral neuroscientist and an expert on rodent behavioral analysis and the director of IDDRC Rodent Behavior Core in MIND Institute.

Fragile X and fragile X-associated tremor/ataxia syndrome

MIND institute has a major focus on studying neurodevelopmental disorders caused by genetic instability, e.g. fragile X syndrome. Randi J. Hagerman and Paul J. Hagerman have been studying genotype-phenotype correlations in fragile X and potential discovery of targeted treatment. [2] [3]

Prevalence study

In October 2002, the institute released a study appearing to confirm that the prevalence of autism has risen steeply. The study was led by Robert Byrd, whose team gathered information on 684 children with developmental disabilities from California's Department of Developmental Services regional centers. Byrd's team's reported autism was on the rise in California, and that some of the increase was real and could not be explained by artificial factors such as misclassification and diagnostic criteria changes, nor by migration of children into California. [4] However, a 2006 analysis found that special education data poorly measured prevalence because so many cases were undiagnosed, and that the 1994–2003 U.S. increase was associated with declines in other diagnostic categories, indicating that diagnostic substitution had occurred in the U.S. overall (though not in California in particular). [5] The current consensus is that the rise in the number of autism cases is largely attributable to changes in diagnostic practices, referral patterns, availability of services, age at diagnosis, and public awareness, [6] though as-yet-unidentified contributing environmental risk factors cannot be ruled out. [7]

However, a study published in 2009 found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in diagnosis or counting. [8] Published in the January 2009 issue of Epidemiology , results also suggest that research should shift from genetics to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California's children.

Autism Phenome Project

In 2006, the MIND Institute launched its Autism Phenome Project, with the objective of identifying biological and behavioral patterns in order to define distinct autism spectrum subtypes. According to Amaral, "The tremendous variation in autism leads us to believe that it is a group of disorders rather than a single one." [9]

The longitudinal study will enroll 1800 children, aged two to four: 900 diagnosed with autism, 450 with developmental delays, and 450 neurotypical control subjects. The study will involve systematic analyses of immune systems, brain structures, genetics, environmental exposures, blood proteins and other developmental indicators, and the medical evaluations will continue for several years. [10] Over time, it is anticipated that this information will assist in determining the appropriate supports or therapies to fulfill each individual's specific requirements. [11] [12]


Related Research Articles

<span class="mw-page-title-main">Asperger syndrome</span> Neurodevelopmental diagnosis now categorized under Autism Spectrum Disorder

Asperger syndrome (AS), also known as Asperger's syndrome, formerly described a neurodevelopmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior, interests, and activities. The syndrome has been merged with other disorders into autism spectrum disorder (ASD) and is no longer considered a stand-alone diagnosis. It was considered milder than other diagnoses that were merged into ASD due to relatively unimpaired spoken language and intelligence.

<span class="mw-page-title-main">Fragile X syndrome</span> X-linked dominant genetic disorder

Fragile X syndrome (FXS) is a genetic disorder characterized by mild-to-moderate intellectual disability. The average IQ in males with FXS is under 55, while about two thirds of affected females are intellectually disabled. Physical features may include a long and narrow face, large ears, flexible fingers, and large testicles. About a third of those affected have features of autism such as problems with social interactions and delayed speech. Hyperactivity is common, and seizures occur in about 10%. Males are usually more affected than females.

The diagnostic category pervasive developmental disorders (PDD), as opposed to specific developmental disorders (SDD), was a group of disorders characterized by delays in the development of multiple basic functions including socialization and communication. It was defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM), and the International Classification of Diseases (ICD).

<span class="mw-page-title-main">Conditions comorbid to autism spectrum disorders</span> Medical conditions more common in autistic people

Autism spectrum disorders (ASD) are neurodevelopmental disorders that begin in early childhood, persist throughout adulthood, and affect three crucial areas of development: communication, social interaction and restricted patterns of behavior. There are many conditions comorbid to autism spectrum disorders such as attention-deficit hyperactivity disorder and epilepsy.

David Gil Amaral is a professor of psychiatry at the University of California, Davis, United States, and since 1998 has been the research director at the M.I.N.D. Institute, an affiliate of UC Davis, engaged in interdisciplinary research into the causes and treatment of autism and related neurodevelopmental disorders. Amaral joined the UC Davis faculty as a professor in the Department of Psychiatry and the Center for Neuroscience and as an investigator at the California Regional Primate Research Center in 1991. Since 1995, he has been a professor of psychiatry in the UC Davis School of Medicine, with an appointment to the Center for Neuroscience.

Rick Rollens is an American lobbyist with a client list including ARCA, Autism Business Association, and Applied Behavior Consultants. He is also a political consultant and identifies as an internationally known advocate for autism research. His specific focus in terms of research and advocacy is for those "full syndrome" autistic individuals. Prior to his son Russell's autism diagnosis, Rollens was the secretary of the California State Senate. Rollens resides in Granite Bay, California where he runs a lobbying/consulting business.

<span class="mw-page-title-main">Causes of autism</span> Proposed causes of autism

Many causes of autism, including environmental and genetic factors, have been recognized or proposed, but understanding of the theory of causation of autism is incomplete. Attempts have been made to incorporate the known genetic and environmental causes into a comprehensive causative framework. ASD is a neurodevelopmental disorder marked by impairments in communicative ability and social interaction, as well as restricted and repetitive behaviors, interests, or activities not suitable for the individual's developmental stage. The severity of symptoms and functional impairment vary between individuals.

The epidemiology of autism is the study of the incidence and distribution of autism spectrum disorders (ASD). A 2022 systematic review of global prevalence of autism spectrum disorders found a median prevalence of 1% in children in studies published from 2012 to 2021, with a trend of increasing prevalence over time. However, the study's 1% figure may reflect an underestimate of prevalence in low- and middle-income countries.

<span class="mw-page-title-main">Classic autism</span> Neurodevelopmental condition

Classic autism, also known as childhood autism, autistic disorder, (early) infantile autism, infantile psychosis, Kanner's autism,Kanner's syndrome, or (formerly) just autism, is a neurodevelopmental condition first described by Leo Kanner in 1943. It is characterized by atypical and impaired development in social interaction and communication as well as restricted, repetitive behaviors, activities, and interests. These symptoms first appear in early childhood and persist throughout life.

<span class="mw-page-title-main">Autism spectrum</span> Neurodevelopmental disorder

Autism, formally called autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental disorder marked by deficits in reciprocal social communication and the presence of restricted and repetitive patterns of behavior. Other common signs include difficulties with social interaction, verbal and nonverbal communication, along with perseverative interests, stereotypic body movements, rigid routines, and hyper- or hyporeactivity to sensory input. Autism is clinically regarded as a spectrum disorder, meaning that it can manifest very differently in each person. For example, some are nonspeaking, while others have proficient spoken language. Because of this, there is wide variation in the support needs of people across the autism spectrum.

Irva Hertz-Picciotto, is an environmental epidemiologist best known for her studies of autism. She is Professor and Chief, Division of Environmental and Occupational Health, Department of Public Health Sciences, at the University of California, Davis (UC-Davis). In addition, she is on the Research Faculty of the MIND Institute at UC-Davis; is Deputy Director of the UC-Davis Center for Children's Environmental Health; and is on the faculty of the Center for Occupational and Environmental Health of the Universities of California at Berkeley, Davis, and San Francisco. Hertz-Picciotto serves on the advisory board of the anti-toxic chemical NGO Healthy Child, Healthy World.

Paul Ashwood is an associate professor of immunology at the MIND Institute at the University of California Davis. His lab conducts research regarding the potential role of immune system disorders in autism, as well as other neurodevelopmental disorders such as Fragile X syndrome, Tourette syndrome, schizophrenia and mood disorders.

Diagnostic substitution is a phenomenon in which one label for a condition becomes replaced with another, causing an apparent decrease in the rate of the first condition and increase in the rate of the second.

The development of an animal model of autism is one approach researchers use to study potential causes of autism. Given the complexity of autism and its etiology, researchers often focus only on single features of autism when using animal models.

Diagnosis, treatment, and experiences of autism varies globally. Although the diagnosis of autism is rising in post-industrial nations, diagnosis rates are much lower in developing nations.

Sex and gender differences in autism exist regarding prevalence, presentation, and diagnosis.

Randi J. Hagerman is an American physician who is the medical director of MIND Institute at the University of California, Davis. She works for the pediatrics department under the division of child development and behavior. She is an internationally recognized researcher in the field of genetics of autism spectrum disorder with special focus on genomic instability. Along with her husband Paul Hagerman, she discovered the Fragile X-associated tremor/ataxia syndrome (FXTAS), a neurological disorder that affects older male and rare female carriers of fragile X.

Sally J. Rogers is professor of MIND Institute and department of Psychiatry and Behavioral Sciences at the University of California, Davis. She is a scientist working on early diagnosis and interventions methods for autism and other neurodevelopmental disorders. She is a pioneer in the field of autism treatment and pioneered the development of The Early Start Denver Model (ESDM). She has published nearly two-hundred papers on the field of autism, early diagnosis and treatments.

Leonard Abbeduto is a psychologist known for his research on individuals with neurodevelopmental disorders, including Fragile X syndrome, autism spectrum disorder, and Down syndrome, and factors that influence their linguistic development over the lifespan. He is the Tsakopoulos-Vismara Endowed Chair of Psychiatry and Behavioral Sciences at University of California, Davis. He serves as Director of Research at the Medical Investigation of Neurodevelopment Disorders (MIND) Institute, which was launched in 2001. Prior to his affiliation with the University of California, Davis, Abbeduto was the associate director for Behavioral Sciences at the Waisman Center at the University of Wisconsin-Madison.

The diagnosis of autism is based on a person's reported and directly observed behavior. There are no known biomarkers for autism spectrum conditions that allow for a conclusive diagnosis.

References

  1. ↑ "Dr. Leonard Abbeduto, Ph.D. for UC Davis Health". health.ucdavis.edu. Retrieved 2019-10-28.
  2. ↑ Hagerman, R.J.; Hagerman, P.J. (2002). Fragile X Syndrome: Diagnosis, Treatment, and Research. Johns Hopkins Series in Contem. US: Johns Hopkins University Press. ISBN   978-0-8018-6843-6.
  3. ↑ Hagerman, R. J.; Leehey, M.; Heinrichs, W.; Tassone, F.; Wilson, R.; Hills, J.; Grigsby, J.; Gage, B.; Hagerman, P. J. (2001-07-10). "Intention tremor, parkinsonism, and generalized brain atrophy in male carriers of fragile X". Neurology. 57 (1). Ovid Technologies (Wolters Kluwer Health): 127–130. doi:10.1212/wnl.57.1.127. ISSN   0028-3878. PMID   11445641. S2CID   28380944.
  4. ↑ Byrd RS, Sage AC, Keyzer J, et al. (2002). Report to the legislature on the principal findings of the epidemiology of autism in California: a comprehensive pilot study (PDF) (Report). M.I.N.D. Institute. Archived from the original (PDF) on 2008-04-14.
  5. ↑ Shattuck PT (2006). "The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education". Pediatrics. 117 (4): 1028–37. doi:10.1542/peds.2005-1516. PMID   16585296. S2CID   26733990.
  6. ↑ Newschaffer CJ, Croen LA, Daniels J, et al. (2007). "The epidemiology of autism spectrum disorders". Annu Rev Public Health. 28: 235–58. doi: 10.1146/annurev.publhealth.28.021406.144007 . PMID   17367287.
  7. ↑ Rutter M (2005). "Incidence of autism spectrum disorders: changes over time and their meaning". Acta Paediatr. 94 (1): 2–15. doi:10.1111/j.1651-2227.2005.tb01779.x. PMID   15858952. S2CID   79259285.
  8. ↑ "UC Davis M.I.N.D. Institute Study Shows California's Autism Increase Not Due To Better Counting, Diagnosis". Medical News Today.
  9. ↑ "Getting closer to finding the culprits" (Press release). UC Davis Health System. Retrieved 2007-11-11.
  10. ↑ Nordahl, Christine Wu; Andrews, Derek Sayre; Dwyer, Patrick; Waizbard-Bartov, Einat; Restrepo, Bibiana; Lee, Joshua K.; Heath, Brianna; Saron, Clifford; Rivera, Susan M.; Solomon, Marjorie; Ashwood, Paul; Amaral, David G. (2022). "The Autism Phenome Project: Toward Identifying Clinically Meaningful Subgroups of Autism". Frontiers in Neuroscience. 15. doi: 10.3389/fnins.2021.786220 . ISSN   1662-453X. PMC   8801875 .
  11. ↑ Singer, Emily (2005-06-01). "'Phenome' project set to pin down subgroups of autism". Nature Medicine. 11 (6): 583. doi: 10.1038/nm0605-583a . ISSN   1546-170X. PMID   15937456.
  12. ↑ Sharp, Marianne Russ; Davis, U. C. "Study explores how changing autism traits are linked to mental health conditions". medicalxpress.com. Retrieved 2023-12-13.
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