Utah Autism Research Project
The Utah Autism Research Project is currently recruiting for the following studies:
Autism Genome Project Trio Network—ages 4-18. Collaborative Genetic study of Autism.
The Autism Genome Project is a large, multinational consortium of over 50 research centers in the US and Europe. The goals of this study are to find genetic variation that leads to susceptibility to autism. Parents will be asked to complete a set of questionnaires to determine eligibility. Individuals with Fragile X, tuberous sclerosis, congenital rubella, phenylketonuria, neurofibromatosis, blindness, deafness and evidence of major CNS injury are not eligible. Both biological parents must also be available for testing. Testing involves questionnaires, blood draw, IQ/language testing and autism diagnostic testing. Contact Jubel Morgan or Bryanna Salisbury at 585-9098.
Multiplex/Extended Pedigree Studies—no age limit. Genetic study of Autism Spectrum Disorders in families. This study uses a resource unique to Utah: large extended pedigrees with more than one person in the family suspected of autism, PDD, or Asperger Disorder. We are using these families to look for genetic variation that could lead to susceptibility to autism. We have already identified many extended families, but are continuing to add new ones. Testing involves blood draw (ages 3 and older), autism testing, brief language and IQ testing, and questionnaires. Contact Bryanna Salisbury or Jubel Morgan at 585-9098
Genetic Association Study—age 3 or older. Genetic study of Autism Spectrum Disorders.
This study will allow local Utah researchers to search for genetic differences identified in the Utah pedigree study or the Autism Genome Project study to see how often they occur in a large set of local Utah families. Parents will be asked to complete a set of questionnaires to determine eligibility. A previous diagnosis of autism is not required. Individuals with Fragile X, tuberous sclerosis, congenital rubella, phenylketonuria, neurofibromatosis, blindness, deafness and evidence of gross CNS injury are not eligible. Both biological parents must also be available for testing. Testing involves questionnaires and blood draw. Contact Jubel Morgan or Bryanna Salisbury at 585-9098.
The EACH CHILD Study (Screening toddlers for Autism) –children born in 2006, living in Salt Lake county (excluding Jordan School District area). Ages 3 and under.
We have been working closely with a local pediatric practice to screen all toddlers for autism. The office staff distributes two of the screening questionnaires recommended by the American Academy of Pediatrics. We followup with parents of any child who screens positive, including inviting them in for an in-person screening evaluation. This is one of the first studies to get close to complete screening within a practice. We hope to further our understanding of the feasibility of screening for autism in a pediatric setting, as well as to examine the ability of current screening practices to detect autism in toddlers. We have almost finished our data collection and hope to analyze our results this fall. This study has been funded by a grant from Centers for Disease Control and Prevention, as well as a grant from the Pediatrics Department at the University of Utah. The research team includes Judith Miller, PhD, Terisa Gabrielsen, Michele Villalobos, Rebecca Alleman, Brandon Segura, Natalie Wahmhoff, and Lisa Kuhn.
DSM-IV Re-classification Project
In the 1980’s, a Utah research team scoured the state to determine the prevalence of autism at that time. Since that time, diagnostic criteria have broadened significantly. In this current study we are examining the records of those individuals who participated in the 1980’s study, to see if more individuals might meet today’s diagnostic criteria for autism. We anticipate this will help further our understanding of why there are more individuals with autism now than previously. We also hope it will help us begin to understand how many adults with autism may be living in Utah today. This study is funded by the Department of Psychiatry at the University of Utah. The research team includes William McMahon, MD; Judith Miller, PhD; Deborah Bilder, MD; Hilary Coon, PhD; Judy Zimmerman, PhD; CareyLyn Wolfley, and Megan Farley, PhD.
Identifying Phenotypes of ASD
Individuals with ASD vary tremendously. We are trying to identify individuals on the spectrum who may be similar to each other, to see if they have similar outcomes or perhaps similar causes. This study takes families who have more than one member with an ASD, and examines their IQ profiles, level of adaptive functioning, and other behavioral features to see if groups cluster together. This study is funded through AutismSpeaks. The research team includes Michele Villalobos, MS; William McMahon, MD; Hilary Coon, PhD; and Judith Miller, PhD.
Outcome Study of Adults with a Childhood Diagnosis of Autism and Measured Cognitive Ability of at Least 69 Points Utah Autism Research Program, Department of Psychiatry, University of Utah.
Past research on the outcome for adults with autism spectrum disorders has demonstrated that outcome for approximately 60% of adults is “poor” or “very poor” and that few adults with autism marry or maintain employment positions. A childhood IQ score of 70 or more and the acquisition of communicative phrase speech by age 6 appear to be necessary but insufficient for obtaining better outcomes (i.e., some close relationships, a relatively high level of independence at work at home). In this study, we examined outcome in adulthood for a group of 41 individuals with childhood autism and childhood IQ scores of 69 or more who were originally identified through a 1980’s population-based study of autism in Utah. Participants included 38 men and 3 women. The average age at the time of the assessments in childhood was 7.17 years (range = 3.08 - 25.92 years) and at follow-up was 32.48 years (range = 22.33 to 46.42 years). Outcome measures included diagnostic assessments, cognitive ability measures, and measures of self-care abilities. Additional information collected concerned demographic variables, indicators of independence, social relationships, medical and psychiatric conditions, and social service use. Adult outcome results for this sample were better than what has been identified in previous work on individuals with similar cognitive functioning. One-fourth (n = 10) obtained a “Very Good” outcome, and one-fourth obtained a “Good” outcome. Fourteen participants were within the “Fair” range of outcome status, and 7 participants achieved a “Poor” outcome. There were no participants in the “Very Poor” outcome category in adulthood. There was considerable variability in measured cognitive ability over time in this sample, with over half of the sample demonstrating a change in cognitive ability of greater than 1 standard deviation. Change in cognitive ability was associated with outcome status, as were self-care skills. There was limited evidence to support the use of early childhood variables to predict adult outcome.