Thank you! Access to Services and Response to Treatment Among Minority Children with an ASD. What do we know? Touch on these questions:

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1 Thank you! Access to Services and Response to Treatment Among Children with an ASD Kelly Sheperd, Ph.D. Rebecca Landa, Ph.D., CCC-SLP Children and families who participated The wonderful CARD staff HRSA, NIMH, Krieger Foundation, ROAR Touch on these questions: What do we know? What do we know? What do we need to know? What are early behavioral markers of ASD? What are effects of intervention? What can we do to address barriers to early identification and intervention? Diagnosis of ASD is happening too late (CDC Autism Surveillance Study, ADDM 2012) Study based on record abstraction of existing medical records Creates algorithm to classify children into groups Autistic disorder = 4 years ASD diagnosis = 4 years, 5 months Asperger diagnosis = 6 years, 3 months children are being diagnosed later than White children What do we know? What do we know? children are less likely to receive ASD diagnosis ASDs more common among White than among Black or Hispanic children children more likely to receive ADHD or CD (Mandell et al., 2009) Largest increases over time were among Hispanic children (110%) and Black children (91%) AAP recommends ASD specific screening at 18 and 24 months Early detection of ASD is possible as early as 14 months (e.g., Landa et al., 2007) Access to appropriate early intervention can improve core deficits of ASD (e.g., Landa et al., 2011) Improvement, but need to do more, for all children, to detect earlier 6 1

2 What do we need to know? ASD, SES, Race/ethnicity, Geography How do we discern the characteristics, needs, barriers, resources, perspectives of minority children and families to promote early identification of ASD and access to appropriate early intervention? This constellation of factors differs for different families within a particular SES, race, geography. Parent attitudes/ beliefs Resources autism Stress Need to know themes Then seek to understand each child and family Child characteristics Early Detection Study What we have learned ASD is brain-based disorder but has no medical test Clinical judgment is gold standard Goal to identify behavioral and biological markers of ASD as early as possible Phenotype changes with development DSM-IV criteria not applicable during infancy Early Detection Study Method Can we diagnose autism at 6 months? Baby sibs of children with autism 18.7% will have ASD (Ozonoff et al., 2011) ~30% will have language/social delays (Messinger et al., in press) At each visit, record clinical judgment about whether child has ASD or other impairments Outcome groupings assigned at 36 months of ASD or non-asd using CJ and gold standard tools No, but we are looking for red flags: Passive temperament Delay in milestones (babbling, motor) Other qualitative motor problems such as tonal issues, postural control issues, head lag Social domain appears to be largely intact (with infrequent exceptions) 11 2

3 Head lag at 6 months Head Lag at 6 months %With Head Lag at 6 Months ASD Language/Social Delays Outcome at 36 months No Delays month predictors of ASD Stereotyped and repetitive interests appear early Successfully predicted over 90% of children with ASD at 14 months Poor or inconsistent response to name Low frequency of babbling; low inventory of consonant sounds in communicative vocalizations Limited response to joint attention Limited initiation of joint attention Receptive language delay on Mullen Scales Stereotyped/repetitive interests and behaviors Present in 60% of 14-month-olds later diagnosed with ASD Present in 90% of 24- and 36-month-olds with ASD Barriers to Early Detection Among Families Cultural differences in views of developmental milestones Decision making within families Socioeconomic status Resources vs. needs Access to health care Role of parent vs. pediatrician Incorrect diagnosis Awareness and understanding of ASD Intervention Studies What have we learned?

4 HRSA R40 Early Achievements Study HRSA R40 Early Achievements Study RCT (6 months): Classroom (10 hours per week) + 2x/week parent coaching + monthly 2-hour parent education group AEPS curriculum paired with Landa Interpersonal Synchrony curriculum Eligibility criteria: months old Diagnosed ASD by clinician impression and ADOS No siblings with ASD NVMA > 12 months English as primary language Parent Mediated + 1:1 intervention: 1.25 hours per week HRSA R40: What do we need to know? Age at access to intervention Are young minority children accessing services as early as non-minority children? Is the phenotypic presentation of toddlers with ASD similar for minority and non-minority children? Are minority parents experiencing different levels of stress and psychological distress than non-minority parents? Are minority parents exhibiting different patterns of engagement with their young children with ASD? Is there a difference in treatment response for minority vs non-minority toddlers with ASD? For the children in this HRSA R40 RCT: 2-year-old participants age of enrollment into intervention (apart from our study) (n=13) Non- (n=24) Age at entry into HRSA R (3.05) (3.16) Age at enrollment into EI (4.97) 18.8 (5.61) p Differences in ASD Phenotype Phenotypic presentation of minority and nonminority children Variable (n=13) Non- (n=24) Age at entry into HRSA R (3.05) (3.16) # of domains in which parents expressed concerns at study entry 6.82 (1.08) 5.93 (2.04) CSBS DP CQ Words 6.39 (12.46) (8.06).025 CSBS DP CQ Understanding 9.00 (6.75) (7.44).020 Mullen Expressive Language AE (5.56) (7.63).015 Mullen Receptive Language AE 8.44 (7.16) (9.36).008 CSBS DP CQ Social (4.63) (7.15) ADOS Soc+Com Algorithm score (2.87) (3.41) Vineland Socialization Domain SS (6.63) (7.40) p 4

5 PSI Parent Domain PSI Child Domain Stress and Psychological Distress Separating Groupings PSI Child Domain PSI Parent Domain (n=18) (21.63) Percentile: (20.6) (21.63) Percentile: 59.9 (23.5) Non- (n=35) (26.27) Percentile: 75 (25.5) (30.50) Percentile: 47.5 (31.8) BSI Depression (9.44) (10.67) BSI Anxiety (9.53) (11.4) BSI Global Severity Index (10.00) (11.4) Non AA Non-African American Non-AA Separating Groupings Brief Symptom Inventory Non AA Non-African American Non-AA % scoring in clinical range BSI GSI Non % scoring in clinical range on 2 or more BSI scales Clinical range Non Change in Scores After 6 Months of Tx HRSA R40 (n=18) Non-minority (n=27) p CSBS DP Words 1.21 (1.12) 0.86 (1.46) Mullen change in RL AE (7.74) (7.611) Mullen change in EL AE 8.06 (7.54) 9.96 (8.57) ADOS Soc (2.96) (2.44) ADOS Com 0.28 (2.22) 0.44 (1.70) Vineland Socialization Domain Raw (2.35) 0.12 (3.73) Are young minority children accessing services as early as nonminority children? Yes Are there phenotypic differences between toddlers with ASD from minority and non-minority groups? Yes primarily in language domains Are minority parents experiencing different levels of stress and psychological distress than non-minority parents? Possibly, but having a toddler with ASD is stressful Are minority parents exhibiting different patterns of engagement with their young children with ASD? No Is there a difference in treatment response for minority vs nonminority toddlers with ASD? No For families who sought out this research-based EI 5

6 What can we do: Identify barriers to EI What can we do? Identify and address barriers to identification and intervention Physical space: space to do the tx size, cleanliness, clutter Equipment: toys Interruptions: especially other people Life demands: difficult to keep appts Preoccupation: hard to focus on tx seemed to affect the buy in Parent education or language: could not read the handouts Parenting attitudes: some parents not used to playing with children occupy children so they could do other things Discipline: use of harsh/punitive strategies Understanding of ASD: unrealistic expectations for child 31 What can we do: Modifications to tx delivery What can we do: Developing More Ideal Tx Intervention not modified for the population: Routines and play with toys Low SES families didn t have a space in the home to play; didn t have toys More concerned about getting through meal and bath and taking time to play was a foreign concept to them. Protocol didn t allow for this. So daily life activities were really where the tx needs to focus Provide options and alternatives Need family-centered center-based tx in community Parent gets to see their child improve Gets to bond with other parents build a community Gets to observe the strategies that work Things we told parents to do didn t always work Difficulty with adapting daily routines Work with parents to modify treatment for individual families What can we do: Changing the developmental landscape What can we do: Why Wait and See? Develop inoculation against: The cascading effects of ASD through early experience Low awareness in the community about early signs of ASD Low awareness in the community about the importance of early experiences and how to create an enriched learning environment for children Limited resources, stress, distress of families 6

7 Conclusions Thank you! Role for Public Health school-readiness and mental health paradigm A community-wide effort Center-based intervention/enrichment component Embed better mechanisms to detect ASD earlier Methods to help parents identify barriers and find resources Consider family preferences and strengths for treatment design - one size does not fit all Dr. Landa CARD team Questions? Contact: sheperd@kennedykrieger.org 39 7