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.

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?

Social Communication

Restricted and Repetitive Behaviors

Expressive Language Level

Autism Spectrum Disorders

Diagnostic and Statistical Manual-5th Edition

Level of Support Needed

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

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…BUTAfrican 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

Some college or less Four years college or more0

500

1000

1500

2000

2500

3000

Hours of Individual Treatment

African Amer-ican

Caucasian

Maternal Education

Cum

ulati

ve H

ours

Tre

atm

ent

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 BarriersLocation

Limited availability of service providers

Service cost

Family stressors

• Predictors of Attrition and Treatment DissatisfactionTime 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 OrganizationCenter for Autism

Research and Treatment

Research Child and Adult

Neurodevelopmental (CAN) Clinic

CART Collaborations with Other Allied UCLA Programs

Early Markers

Genetics/Etiology

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

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

Autism Centers of Excellence (ACE): Center and Network Sites

Where’s your piece of the pie?

Autism Genetics Resource Exchange (AGRE)

Proband Ethnicity

Autism Centers of Excellence (ACE): Center and Network Sites

Autism Genetics & Human Diversity Study

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

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)

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 servicesWashington 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

egraham@mednet.ucla.edu