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- 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
- 9. Disparities in Diagnosis Mandell, Listerud, Levy, & Pinto-Martin (2002).
- 10. Disparities in Autism Services Many African American and Latino children are missing out on early intervention Early intervention leads to better outcomes
- 11. Disparities in Treatment 0 500 1000 1500 2000 2500 3000 Some college or less Four years college or more Cumulative Hours Treatment Maternal Education Hours of Individual Treatment African American Caucasian Carr & Lord, 2013
- 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
- 17. Autism Centers of Excellence (ACE): Center and Network Sites
- 18. Where’s your piece of the pie? Native Amer. 4 Asian 75 Afr. Amer. 208 >1 race 277 Native Pacific 15 Unknown 277 White 2784 Autism Genetics Resource Exchange (AGRE) Proband Ethnicity
- 19. Autism Centers of Excellence (ACE): Center and Network Sites
- 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
Notas do Editor
- 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