Transcript Amanda-Gulsrud-and-Erin-Graham-ETG

UCLA Center for Autism
Research and Treatment
A leading center for multidisciplinary ASD research,
treatment, and education.
Amanda Gulsrud, PhD & Erin Graham, PhD
UCLA Semel Institute
760 Westwood Plaza
Los Angeles, CA 90095
Tel: (310) 825-9041 | Fax: (310) 825-2682
www.autism.ucla.edu
Presentation Overview
• What is Autism Spectrum Disorder and Why
Does it Matter?
• What is UCLA CART?
• What does UCLA CART have to offer in the
community?
What is Autism Spectrum Disorder?
• Autism Spectrum Disorder (ASD) is a disorder of brain
development
• Onset in childhood; continues into adulthood
• Children and adults with ASD may communicate,
interact, behave, and learn in ways that are different
than most people
• Abilities of people with ASD can range from gifted to
severely challenged
CDC Learn the Signs. Act Early. www.cdc.gov/actearly
What is Autism Spectrum Disorder?
Autism
Social
Spectrum
Communication
Disorders
Restricted and
Repetitive
Behaviors
Expressive Language Level
Level of Support Needed
Diagnostic and Statistical Manual-5th Edition
What is Autism Spectrum Disorder?
Children or Adults with ASD might:
• Not point at objects to show
interest
• Not look at objects when another
person points at them
• Have trouble relating to others or
not have an interest in other
people at all
• Appear to be “in their own world”
• Avoid eye contact and want to be
alone
• Have trouble understanding other
people’s feelings or talking about
their own feelings
• Repeat actions over and over
again
• Play with toys or objects nonfunctionally
• Have trouble adapting when a
routine changes
• Have unusual reactions to the
way things smell, taste, look, feel,
or sound
• Have unusual motor movements
(Social Communication)
(Restricted & Repetitive Interests)
CDC Learn the Signs. Act Early. www.cdc.gov/actearly
What Causes ASD?
• No one cause of autism
has been identified
• Most cases involve a
complex and variable
combination of genetic
risk and environmental
factors that influence
early brain
development
Autismspeaks.org
How common is ASD?
• 1 in 68 children has an autism
spectrum disorder (CDC, 2014)
• More common in boys than
girls
• ASD occurs in all racial, ethnic,
and social groups…BUT
African American and Latino children are
more likely to be diagnosed later
Disparities in ASD Diagnosis
• Autism can be reliably diagnosed at two years
of age (and sometimes younger)
• The average age of diagnosis for African
American and Latino children is 6-8 years
Disparities in Diagnosis
Mandell, Listerud, Levy, & Pinto-Martin (2002).
Disparities in Autism Services
Many African American and Latino children are
missing out on early intervention
Early intervention leads to better outcomes
Disparities in Treatment
Hours of Individual Treatment
3000
Cumulative Hours Treatment
2500
African
American
2000
Caucasian
1500
1000
500
0
Some college or less
Four years college or more
Maternal Education
Carr & Lord, 2013
Partnering in South Los Angeles
• Families of lower levels of education, lower financial income,
and racial/ethnic minority background have been found to
experience greater limitations in accessing services for ASD
(Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007; Mandell et al., 2009)
• Most current intervention studies in autism have only included
predominantly white, middle class populations (Lord, Wagner,
Rogers, Szatmari, Aman, Charman et al., 2005).
Barriers to Participation in Intervention
• Access Barriers
Location
Limited availability of service providers
Service cost
Family stressors
• Predictors of Attrition and Treatment
Dissatisfaction
Time commitment (waitlist, length of intervention)
Few incentives for attendance
Mismatched expectations
Lack of cultural understanding
Ingoldsby (2010); Nock & Ferriter (2005); Mandell &
Novak (2005); Snells-Johns et al.(2004)
UCLA CART History
Co-founded by Dr. Daniel Geschwind, neurologist and the late
Dr. Mariam Sigman, a developmental and clinical psychologist,
the UCLA Center for Autism Research and Treatment was
established in 2003 as one of eight national centers in the
National Institute of Health (NIH) funded research initiatives,
Studies to Advance Autism Research and Treatment (STAART).
In 2007, the Center was awarded two NIH Autism Centers of
Excellence (ACE) grants. Mostly recently, CART became the
only ACE Center in the country to be awarded renewed
funding to 2017.
CART – Center Organization
Center for Autism
Research and Treatment
Research
Child and Adult
Neurodevelopmental
(CAN) Clinic
Early
Markers
Evaluation
Genetics/Eti
ology
Treatments
Biomarkers
Long-term medical
and psychiatric care
Treatment
Referrals for genetic
testing
CART Collaborations with
Other Allied UCLA Programs
Early Childhood Partial
Hospitalization
Program
PEERS
ABC Partial Program
Parenting and
Children’s Friendship
Program
Secret Agent Society
(SAS)
CART Research by Study Name
AGE RANGE
STUDY NAME
Infants under 6-weeks
Identifying Early Signs of Autism in High-RisK Infants
12 - 21 months
Joint Engagement in Infants at Risk for ASD: Integrating Treatment with Biomarkers
33 - 39 months
Identifying Children With Autism Spectrum Disorders And Developmental Delays
3 - 21 years
5 - 8 years
5 - 11 years
Autism Genetics and Human Diversity Study
Adaptive Intervention for minimally verbal children with ASD in the Community
Treatment with Aripiprazole and Behavior Intervention for Children with Autism who have Low
Language Ability
8 - 13 years
Treatment with Therapy for Study for Children with Autism
7 - 17 years
Brain Imaging in Children with Autism
8 - 16 years
Treatment with Risperidone for Repetitive Behaviors in Children with Autism
11 - 18 years
PEERS Social Skills Training for Children/Teens with Autism
18 - 35 years
Treatment of Social Disability in Young Adults with Autism Spectrum Disorders
Autism Centers of Excellence
(ACE): Center and Network Sites
Where’s your piece of the pie?
Unknown 277
Native Pacific 15
>1 race 277
Afr. Amer. 208
Asian 75
Native Amer. 4
Proband Ethnicity
White 2784
Autism Genetics Resource Exchange (AGRE)
Autism Centers of Excellence
(ACE): Center and Network Sites
Autism Genetics & Human Diversity Study
UCLA RESEARCH STUDY
The purpose of this
study is to help
researchers
understand autism
spectrum disorders
in African American families.
If you have one or more children between the ages of 3
and 21 years with symptoms of autism, your family may
be eligible to participate
Who can participate?
• Children between the ages of 3-21 years with symptoms consistent
with an autism spectrum disorder (ASD) and their siblings and
parents
• Families must be of African American descent
What is involved?
•
•
•
•
One screening phone call
One in-person family visit for up to 6 hours
Observations of children’s behavior
Questionnaires and interviews for parents about themselves and their
children’s development
Families completing the study will receive $250
For more information, contact the Study Coordinator at
(310) 794-4090 or Special Needs Network at (323) 291-7100.
Protocol ID:IRB#14-000312
UCLA IRB Approved Approval Date: 10/22/2014 Through: 6/24/2015 Committee: Medical IRB 3
Study Involvement Breakdown
• Before Community Event
• Phone screen
• Questionnaires
• During Community Event
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•
•
•
•
•
Blood draw
Interviews
Photos
Physical exam
Verbal feedback
Compensation
• After Community Event
• Written feedback report
• Follow-up if necessary
Study Magnitude
• Government funded by the NIH
• 4 years ongoing through 2017
• Multiple sites across the nation
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•
•
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•
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UCLA
Wash U (St. Louis)
Emory (Atlanta)
Einstein (New York)
Yale (New Haven)
Johns Hopkins (Baltimore)
Early Findings
(N = 95)
• Delays in service initiation for African American children
• Average interval between 1st concerns and receiving an
ASD diagnosis = 43 months
• 49% Diagnosed some other diagnosis before receiving an
ASD diagnosis
• 53% of these children were diagnosed ADHD
• 31% Reported visiting a professional 6 or more times before
receiving a diagnosis
• 97% insured
• Approx. half experienced delayed care due to inefficient,
unavailable, inadequate, or denied ASD services
Washington University, St. Louis
We want YOU!
• Next Community Data Collection Event in South
LA on Saturday, June 6th
• Ongoing research appointments also available
during the week on UCLA campus in Westwood
• Sign-up now or contact the Study Coordinator for
more info:
Erin Graham, Ph.D.
310-794-4090
[email protected]