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Amanda-Gulsrud-and-Erin-Graham-ETG-additions.pptx
1. UCLA Center for Autism
Research and Treatment
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
A leading center for multidisciplinary ASD research,
treatment, and education.
2. 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?
3. 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
4. What is Autism Spectrum Disorder?
Social
Communication
Restricted and
Repetitive
Behaviors
Expressive Language Level
Autism
Spectrum
Disorders
Diagnostic and Statistical Manual-5th Edition
Level of Support Needed
5. 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 non-
functionally
• 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
6. 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
7. 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
8. 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
10. Disparities in Autism Services
Many African American and Latino children are
missing out on early intervention
Early intervention leads to better outcomes
12. 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).
13. 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)
14. 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.
15. CART – Center Organization
Center for Autism
Research and Treatment
Research
Child and Adult
Neurodevelopmental
(CAN) Clinic
CART Collaborations with
Other Allied UCLA Programs
Early
Markers
Genetics/Eti
ology
Biomarkers
Treatment
ABC Partial Program
Secret Agent Society
(SAS)
PEERS
Early Childhood Partial
Hospitalization
Program
Evaluation
Referrals for genetic
testing
Long-term medical
and psychiatric care
Treatments
Parenting and
Children’s Friendship
Program
16. 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 Autism Genetics and Human Diversity Study
5 - 8 years Adaptive Intervention for minimally verbal children with ASD in the Community
5 - 11 years
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
20. Autism Genetics & Human Diversity Study
The purpose of this
study is to help
researchers
understand autism
spectrum disorders
in African American families.
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.
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
UCLA RESEARCH STUDY
Protocol ID:IRB#14-000312 UCLA IRB Approved Approval Date: 10/22/2014 Through: 6/24/2015 Committee: Medical IRB 3
21. Study Involvement Breakdown
• Before Community Event
• Phone screen
• Questionnaires
• During Community Event
• Blood draw
• Interviews
• Photos
• Physical exam
• Verbal feedback
• Compensation
• After Community Event
• Written feedback report
• Follow-up if necessary
22. Study Magnitude
• Government funded by the NIH
• 4 years ongoing through 2017
• Multiple sites across the nation
• UCLA
• Wash U (St. Louis)
• Emory (Atlanta)
• Einstein (New York)
• Yale (New Haven)
• Johns Hopkins (Baltimore)
23. 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
24. 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
egraham@mednet.ucla.edu
Editor's Notes
Genetic predisposition + a number of nongenetic, or environmental influences further increase a child’s risk before and during birth
Advanced parental age at time of conception
Maternal illness during pregnancy
Mother’s exposure to to high levels of pesticides and air pollution
Extreme prematurity
Very low birth weight
Difficulties during birth (e.g. oxygen deprivation)
-age of diagnosis (ethnic minority children later)
-likelihood of receiving ASD diagnosis
-financial burden, accessibility to services
Mandell, Listerud, Levy, & Pinto-Martin, 2002; Mandell, Ittenbach, Levy, & Pinto-Martin, 2007; Ruble, Heflinger, Renfrew, & Saunders, 2005; Flanders, Engelhart, Pandina, & McCracken, 2007
Demographic factors such as maternal education, birth weight, and IQ have also been found to influence diagnostic rates of ASD (Mandell, Wiggins, Carpenter, Daniels, DiGuiseppi, Durkin et al., 2009).
Age, race, maternal education, and maternal age were associated with type of identification source (Yeargin-Allsop, Rice, Karapukar, Doernberg, Boyle, & Murphy, 2003). African American children and children who were school-aged were more likely to be identified at school sources. Furthermore, as maternal education and maternal age increased, there was a greater likelihood that children were identified at sources outside of the educational system.
Families who are eligible for Medicaid also face challenges to receiving adequate care for their child with ASD. In a Tennessee Medicaid managed care program, the rate of children receiving services for the treatment of ASD was only one-tenth of the expected estimate given the prevalence of ASD in that region (Ruble, Heflinger, Renfrew, & Saunders, 2005). Medicaid-based programs will not fund the cost of intensive behaviorally-based interventions for children with ASD and school systems are unable to provide the labor-intensive treatments. Consequently, families who wish to provide such services for their children must bear the financial burden on their own (Newschaffer & Curran, 2003).
Higher SES was associated with a greater likelihood of Autism across ethnic categories. . Cuccaro, Wright, Rownd, Abramson, Waller, & Fender (1996)
The way in which underserved is defined, may vary across fields.
Underserved, as defined by Snells-Johns and colleagues refers to when…When an individual or family with an identifiable disorder is receiving no or minimal health services (Snells-Johns, Mendez, and Smith, 2004)
In the field of autism, prevalence rates of the disorder are similar across racial/ethnic backgrounds and other demographic factors, yet families with lower levels of education, lower financial income, and racial/ethnic minority background are historically underserved. Many children of families from these populations do not receive diagnoses as early, if at all, nor do they receive intervention.
This has large implications for long-term outcome, as it is generally accepted that children benefit from early diagnosis and early intervention
Research outside the field of autism intervention has provided some insight into barriers to participation in intervention research
The use of strategies to overcome such access barriers has not been widely published in the autism field.
There is also a lack of emphasis on the many factors that may affect a child or family’s outcome
CART has received multiple federal grants from the National Institutes of Health (NIH) through the Autism Centers of Excellence (ACE) program
Purpose of ACE program is to investigate both causes and treatment of autism
11 current ACE grants, mostly on east coast
UCLA CART has 3 of the 4 grants on west coast
Great for us, but how does that help you?
For perspective on where the majority of autism research has focused in terms of race and ethnicity
African Americans represent approximately 7% of the pie
Remember those 3 ACE grants I told you about that were awarded to UCLA CART?
2 of them are focused on participants recruited right here in South LA.
We’re developing partnerships with community leaders and organizations to make sure underrepresented racial and ethnic minorities are included in the conversation about autism causes and treatment
Genetic data will take a while to analyze, but preliminary clinical data strongly suggest socio-political implications for access to ASD services for African American families
