NAVIGATING AUTISM DATA, RESEARCH, & RESOURCES: PRACTICAL STRATEGIES AND TIPS FOR PROVIDERS

Transcription

1 NAVIGATING AUTISM DATA, RESEARCH, & RESOURCES: PRACTICAL STRATEGIES AND TIPS FOR PROVIDERS Presented by PJ Turcotte, MPH Kaitlin Koffer Miller, MPH June 7 th, 2018 AGENDA Who are We? Who are You? Identifying Bad Research and Resources and Finding Good Research and Resources Finding and Using Good Data Sources Wrap Up PATC

2 WHO ARE WE? WHAT DOES ASERT DO? support THE AUTISM COMMUNITY THROUGHOUT PENNSYLVANIA educate INDIVIDUALS WITH AUTISM AND THEIR FAMILIES, PROFESSIONALS, AND COMMUNITY MEMBERS measure DATA, NEEDS, AND CHANGE build RESOURCES, PROGRAMS, AND INNOVATIVE PROJECTS connect LOCAL, REGIONAL, AND STATEWIDE RESOURCES PATC

3 ASERT COLLABORATIVE REGIONAL PROJECTS ADULT DIAGNOSTIC CLINIC RESOURCE CENTER JUSTICE AND CHILD WELFARE TRAININGS FIRST RESPONDER TRAINING PERIODIC RISK EVALUATION (PRE) SUBSTANCE ABUSE PROJECT PSYCH REHAB PA AUTISM NEEDS ASSESSMENT PA AUTISM CENSUS RESOURCE CENTER ADULT AND ADOLESCENT ASSESSMENT CLINIC SOCIAL SKILLS GROUPS PCAMS RESOURCE CENTER WESTERN CENTRAL ALL EASTERN PATC WHO ARE YOU? 3

4 TELL US ABOUT YOU! What county are you from? How do you use data and research now? How do you want to use data and research in the future? PATC

5 Text LINDSAYSHEA877 to to join! PATC

6 RESEARCH: THE GOOD, THE BAD, AND THE UGLY INCREASING AUTISM PREVALENCE [CELLRANG [CELLRANG E] E] [CELLRANG [CELLRANG E] E] [CELLRANG [CELLRANG [CELLRANGE] E] E] PATC

7 INCREASING AUTISM PREVALENCE [CELLRANG [CELLRANG E] E] [CELLRANG [CELLRANG E] E] [CELLRANG [CELLRANG [CELLRANGE] E] [CELLRANGE] E] PATC INCREASING AUTISM PREVALENCE [CELLRANG [CELLRANG [CELLRANG E] E] E] [CELLRANG [CELLRANG E] E] [CELLRANG [CELLRANG [CELLRANGE] E] [CELLRANGE] E] PATC

8 AUTISM RESEARCH AND ID RESEARCH 5000 Number of Publications on PubMed about Autism or Intellectual Disabilities ID Publications ASD Publications PubMed search terms: ASD = autis* ID= Mental Retardation OR intellectual disabilit* WHAT IS THE CURRENT STATE OF ASD RESEARCH? Educational Outcomes ASD Research Intervention Biomedical/ Genetic Causes** Voc Bio Early Dx Quality of Life Syst ems Supp ort behav Source: OAR PubMed PATC

9 WHAT IS RESEARCH? Basic Research Designed to answer a fundamental question Example: biomedical research Applied Research Taking basic research and applying it to everyday life Example: a pilot program Source: OAR PATC WHAT ARE THE COMPONENTS OF A RESEARCH ARTICLE? Abstract Background/ Introduction Methods At the top of the article A brief snapshot of the study Provides context to the study What came first? The recipe for the study Design, participants (characteristics and number), procedure Results The findings were they significant? Figures to demonstrate the findings Discussion How the authors interpreted the findings Limitations? Source: OAR PATC

10 EXAMPLE OF RESEARCH ARTICLE COMPONENTS PATC WHAT DO RESULTS MEAN? Mean Statistically Significant n Average score, result, etc. of all study participants Findings are only meaningful if they are statistically significant**. If the probability that the difference could be due to chance is less than 5% or 1%, depending on the study. Often indicated with an * in the findings tables. The number of study participants Be wary of studies with small n s* Source: OAR PATC

11 DETERMINING THE EFFECTIVENESS OF TREATMENTS Investigate Ask for Examples Peer review studies Consult Trusted Professional Objective opinion Decision Pursue Ask more questions Source: Mruzek, D.W. (2014). ASD intervention: How do we measure effectiveness? Science in AutismTreatment, 11(3), PATC DETERMINING THE EFFECTIVENESS OF TREATMENTS ADDITIONAL QUESTIONS TO ASK: PRIOR TO IMPLEMENTATION Decision Pursue Ask more questions What behaviors should change? When will we look at the data? How will these changes be measured? How will the data be presented? Source: Mruzek, D.W. (2014). ASD intervention: How do we measure effectiveness? Science in AutismTreatment, 11(3), PATC

12 WHAT TYPES OF STUDIES ARE THERE? Case Study Correlational Study Longitudinal Study Experimental Study Clinical Trials Source: OAR PATC STUDY DESIGNS Randomization Single or double blind studies Two or more alternative treatments are assigned to volunteers by chance rather than by choice When participants do not know which treatment is being used (single) When neither the patient, nor the researchers, know which treatment is being used (double) PATC

13 LEVELS OF EVIDENCE Systematic Reviews Randomized Control Trials Cohort Studies Case Control Studies Case Series, Case Reports Editorials, Expert Opinions PATC HOW DO I KNOW IF RESOURCES/WEBSITES/RESEARCH ARE GOOD? Is it a for profit company? Is it a.com or a.edu,.org., or.gov? What are the researchers credentials? What is the sample size? Is the site promoting nonevidence based practices? Is the site promoting pills, books, etc.? Is the site promoting dangerous practices? Is the study inappropriately claiming cause and effect? Is it personal opinion? Is it on social media?** Is it claiming a cure for autism? PATC

14 WHAT ARE EVIDENCE BASED PRACTICES FOR AUTISM? Established Antecedent Package Behavioral Package Comprehensive Behavioral Treatment for Young Children Modeling Joint Attention Intervention Naturalistic Teaching Strategies Peer Training Package Schedules Self Management Story based Intervention Package Source: National Standards Project, Phase 2 PATC WHAT ARE EVIDENCE BASED PRACTICES FOR AUTISM? (CONT.) Emerging Aug. and Altern. Communication Device Cog. Behavioral Intervention Exercise Exposure Package Imitation based package Initiation training Language Training Massage/Touch Therapy Multi Component Package Source: National Standards Project, Phase 2 PATC

15 WHAT ARE EVIDENCE BASED PRACTICES FOR AUTISM? (CONT.) Unestablished Academic Interventions Auditory Integration Training Facilitated Communication GF/CF Diet Sensory Integration Package Harmful/Ineffective None noted at this time in the research** Source: National Standards Project, Phase 2 PATC LET S TEST IT OUT! PATC

16 EXAMPLE #1 Centers for Disease Control and Prevention (CDC) PATC PATC

17 EXAMPLE #2 Talk About Curing Autism (TACA) PATC PATC

18 ASATONLINE.ORG Gold Star Resource PATC FINDING AND USING DATA SOURCES 18

19 PUBLIC DATA SOURCES ASERT Data Sources PA Autism Census (paautism.org/census) PA Autism Needs Assessment (paautism.org/needsassessment) Ask us! Other Sources Bureau of Labor Statistics US Census American Fact Finder Data.gov PATC CORRELATION IS NOT CAUSATION PATC

20 RESEARCH AND DATA CASE STUDY: AUTISM AND CRIMINAL JUSTICE SYSTEM WHAT DO YOU KNOW ABOUT AUTISM AND THE JUSTICE SYSTEM? PATC

21 PA AUTISM CENSUS PENNSYLVANIA AUTISM CENSUS Captures number of people with autism Where are people with autism being served? Where they are located geographically? PATC

22 JUVENILE JUSTICE CHARGES: LANCASTER Top 5 Charges Non payment of fines Simple assault cause bodily injury Theft Theft vehicle or >$2000 Criminal mischief real or personal property Ages with Highest Number of Charges Lancaster PA PATC JUVENILE JUSTICE BY CHARGE TYPE: LANCASTER Offense Against Person 29% Includes Assault, Harassment, Stalking etc. Offense Against Property 34% Includes Arson, Theft, Trespassing etc. Other 38% Includes Drug Charges, Driving Offenses, etc. PATC

23 JUVENILE JUSTICE BY CHARGE SEVERITY: LANCASTER Felony Lancaster 18% PA 27% Misdemeanor Lancaster 53% PA 56% Summary Lancaster 28% PA 17% PATC PA AUTISM NEEDS ASSESSMENT 23

24 PENNSYLVANIA AUTISM NEEDS ASSESSMENT The PA Autism Needs Assessment is the largest and most comprehensive survey of individuals with autism and their caregivers to date in the nation. PATC PA AUTISM NEEDS ASSESSMENT Pre Elementary 8% Individual 4% 3,500 respondents Elementary 36% Adult 14% Middle/High 38% PATC

25 NEEDS ASSESSMENT FINDINGS Expert from the Summary Report Service Needs Getting a Diagnosis Barriers to Service Access Employment Unwanted Outcomes Family Impact PATC NEEDS ASSESSMENT FINDINGS Expert from the Summary Report Service Needs Getting a Diagnosis Barriers to Service Access Employment Unwanted Outcomes Family Impact PATC

26 NEEDS ASSESSMENT FINDINGS Unwanted Outcomes PATC AUTISM AND JUSTICE IN RESEARCH 26

27 WHAT DOES THE RESEARCH SAY? Most studies are completed in institutionalized settings (Forensic hospitals, jails, etc.) Contact with the justice system has found to be both higher and lower when comparing ASD to other populations (i.e. we don t know) Rava et al. found that 20% of youth with ASD have been stopped and questioned and 5% have been arrested using NLTS data PATC INTHENEWS Is this study good? Should you use murderpedia.org? (No) (No you shouldn t) PATC

28 RECENT RESEARCH.. Source: PATC SCHOOL HOSPITALIZATION AND POLICE CONTACT Through experiences and previous research we had an inclination that these events don t occur in isolation Are individuals with autism getting in trouble in school? Expulsions, detentions, suspensions Are these individuals being hospitalized? For psychiatric reasons How are the police involved? Stopped by police, arrested, fined, etc. PATC

29 SCHOOLS, HOSPITALIZATIONS, AND POLICE PATC SCHOOLS, HOSPITALIZATIONS, AND POLICE PATC

30 SCHOOLS, HOSPITALIZATIONS, AND POLICE PATC SCHOOLS, HOSPITALIZATIONS, AND POLICE 30

31 RESOURCE SPOTLIGHTS SOCIAL STORY RESOURCE COLLECTION Are you looking for existing social stories or guidance on how to create social stories? ASERT Developed Social Stories paautism.org/socialstories Other Resources PATC

32 VISUAL SCHEDULE RESOURCES Are you looking for resources about using visual schedules? How to Create Visual Schedules Other Resources paautism.org/visual PATC MENTAL HEALTH RESOURCE BUNDLE Are you looking for resources about mental health and autism? Overview Anxiety Depression Behavior Services and Assessment paautism.org/mentalhealth Psychopharm Crisis Intervention PATC

33 SUPPORT GROUP MAP Are you looking for support groups for siblings, participants and families or self advocacy groups? Clickable map by county Online groups In person groups paautism.org/supportgroups PATC PHILLY NEIGHBORHOOD RESOURCE MAP Are you looking for support groups, self advocacy groups, libraries, or other community organizations in Philadelphia? Clickable map by neighborhood Online groups In person groups Philadelphia Free Library Branches phillyautismproject.org/resourcemap PATC

34 EARLY CHILDHOOD RESOURCE BUNDLE Are you looking for information about developmental milestones, the signs of autism, and what to do after an autism diagnosis? Developmental Milestones Early Signs and Evaluation Process Newly Diagnosed paautism.org/earlychildhood PATC EARLY INTERVENTION RESOURCE COLLECTION Are you looking for resources about early intervention services? What is Early Intervention? Accessing Early Intervention Services paautism.org/earlyintervention PATC

35 TRANSITION TOOLKIT COLLECTION Are you looking for transition resources throughout the lifespan? Newly Diagnosed Ages 0 5 Ages 5 11 Ages Ages paautism.org/transitiontoolkit Older Adults Lifespan PATC JUSTICE RESOURCE COLLECTION Are you looking for resources about autism and justice system? Background Information ASERT Justice Trainings Social Stories Resources for Professionals paautism.org/justice PATC

36 PLAN Are you looking for information about engaging with law enforcement agencies? Prepare Learn Advise Notify paautism.org/plan PATC ACT 62 RESOURCES Are you looking for resources about payment for autism services? What is the Autism Insurance Mandate? Act 62 General Information for Families What are the Difference Between Private Insurance and Medicaid? paautism.org/act62 PATC

37 PHYSICAL HEALTH RESOURCE BUNDLE Are you looking for resources about medical conditions in individuals with autism? General Resources Resources about Sleep Issues Resources about Seizure Disorders Resources about GI Issues Resources about Obesity Related Conditions paautism.org/health PATC APPLIED BEHAVIOR ANALYSIS (ABA) RESOURCE COLLECTION Are you looking for resources about ABA? What is ABA? Finding, Evaluating, and Accessing ABA paautism.org/aba PATC

38 LGBTQI RESOURCE PAGE Are you looking for resources and information about the LGBTQI community for participants or families? Background Information Resources for Parents and Families Resources for Individuals paautism.org/lgbtqi Resources for Policymakers and Providers PATC VOTING RESOURCE PAGE Are you trying to prepare for election day? ASERT Voting Infographic Preparing for Voting Applying, Accommodations, and Polling Places paautism.org/vote PATC

39 LIBRARY RESOURCES Are you preparing your child for going to the library? Social Stories Resources for Librarians paautism.org/library PATC PSYCHOPHARMACOLOGY INFORMATION SHEETS Are you looking for information about medications and autism? paautism.org/pharminfo PATC

40 WRAP UP ACKNOWLEDGEMENTS: FUNDERS AND COLLABORATORS PATC

41 Website: ASERT is funded by the Bureau of Autism Services, PA Department of Human Services PATC