Autism Identification From Psychometrics to Systems Autism Identification

Autism Identification: From Psychometrics to Systems

Autism Identification: From Psychometrics to Systems (and Social Supports)

Developmental Disabilities l Conditions characterized by – Atypical development l l l Cognitive Motor Social-emotional

Autism Spectrum l Condition characterized by – – Atypical communication/socialization Repetitive/perseverative behaviors, interests

How Prevalent? • • 1 in 6 (~17%) children have a developmental disability or delay (DD) (CDC, 2011; National Survey of Children’s Health) 1 in 68 (~1. 5%) have an autism spectrum disorder (CDC, 2014; Autism and Developmental Disability Monitoring Network)

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – Longitudinal process

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – – Longitudinal process Ask/listen to parent concerns

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – – – Longitudinal process Ask/listen to parent concerns Developmental record

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – – Longitudinal process Ask/listen to parent concerns Developmental record Developmental observations

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – – – Longitudinal process Ask/listen to parent concerns Developmental record Developmental observations Look for risk/protective factors

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – – – Longitudinal process Ask/listen to parent concerns Developmental record Developmental observations Look for risk/protective factors Document

What is developmental monitoring and screening? l Developmental surveillance/ monitoring (AAP, 2006) – – – Longitudinal process Ask/listen to parent concerns Developmental record Developmental observations Look for risk/protective factors Document l Professionals (e. g. , physicians)

What is developmental monitoring and screening? l Developmental surveillance/monitoring (Barger, Rice, Simmons, & Wolf, 2016) – – – Cultural change/awareness LTSAE Advocacy

What is developmental monitoring and screening? l Developmental surveillance/monitoring (Barger, Rice, Simmons, & Wolf, 2016) – – – Cultural change/awareness LTSAE Advocacy l l Professionals (e. g. , physicians) Caretakers Early childcare providers Community members (YMCA)

What is developmental monitoring and screening? l Autism/Developmental screening (Macy, 2012; Robins et al. , 2014) – – Provision of brief instrument/questionnaire to identify children at risk of autism or developmental disabilities Typically given by health care professionals

Why increase monitoring and screening? • 1 in 6 (~17%) children have a developmental disability (DD) (CDC, 2011; National Survey of Children’s Health)

Why increase monitoring and screening? • • l 1 in 6 (~17%) children have a developmental disability (DD) (CDC, 2011; National Survey of Children’s Health) 1 in 68 (~1. 5%) have an autism spectrum disorder (CDC, 2014; Autism and Developmental Disability Monitoring Network)

Why increase monitoring and screening? • • • 1 in 6 (~17%) children have a developmental disability (DD) (CDC, 2011; National Survey of Children’s Health) 1 in 68 (~1. 5%) have an autism spectrum disorder (CDC, 2014; Autism and Developmental Disability Monitoring Network) Only 30% of children with DD identified before Kindergarten • 2 nd grade influx

Why increase monitoring and screening? • • 1 in 6 (~17%) children have a developmental disability (DD) (CDC, 2011; National Survey of Children’s Health) 1 in 68 (~1. 5%) have an autism spectrum disorder (CDC, 2014; Autism and Developmental Disability Monitoring Network) Only 30% of children with DD identified before Kindergarten Early intervention requires early identification

Does screening/surveillance work? l Policy recommendations for developmental screening primarily based on availability of valid developmental screeners (APA, 2006)

Does screening/surveillance work? l Policy recommendations for developmental screening primarily based on availability of valid developmental screeners (AAP, 2006) – Developmental screeners are tools designed to identify children at risk of autism and/or developmental disabilities/delays

Does screening/surveillance work? l Policy recommendations for developmental screening primarily based on availability of valid developmental screeners (AAP, 2006) – – Developmental screeners are tools Developmental surveillance/screening is a process

Does screening/surveillance work? l Policy recommendations for developmental screening primarily based on availability of valid developmental screeners (AAP, 2006) – – Developmental screeners: tools Developmental surveillance/screening: process l LIMITED EVIDENCE IN RELATION TO EARLY INTERVENTION IDENTIFICATION

What does this process look like? l Consider the Individuals with Disabilities Act (IDEA) Part C (IDEA, 2004; PL 108 -466) – 0 -3 early intervention system

What does this process look like? l Consider the Individuals with Disabilities Act (IDEA) Part C (IDEA, 2004; PL 108 -466) – l 0 -3 early intervention system Part C Early Intervention Process Includes – Monitoring (i. e. , Child Find)

What does this process look like? l Consider the Individuals with Disabilities Act (IDEA) Part C (IDEA, 2004; PL 108 -466) – l 0 -3 early intervention system Part C Early Intervention Process Includes – – Monitoring (i. e. , Child Find) Evaluation Assessment Referral

What does this process look like? l Consider the Individuals with Disabilities Act (IDEA) Part C (IDEA, 2004; PL 108 -466) – l 0 -3 early intervention system Part C Early Intervention Process Includes – – – Monitoring (i. e. , Child Find) Evaluation Assessment Referral Evaluation Assessment and Eligibility Determination

What does this process look like? l Consider the Individuals with Disabilities Act (IDEA) Part C (IDEA, 2004; PL 108 -466) – l 0 -3 early intervention system Part C Early Intervention Process Includes – – Monitoring (i. e. , Child Find) Evaluation Assessment Referral Evaluation Assessment and Eligibility Determination Intervention Receipt l Individualized Family Service Plan (IFSP) (Blackman, Healy, & Ruppert, 1992; Bricker et al. , 2013)

Macy et al. (2014)

Macy et al. (2014) l l l l Recognition Referral Intake Assessment Eligibility Determination IEP EI receipt

Developmental Surveillance Model

Developmental Surveillance Model a

Developmental Surveillance Model a

Developmental Surveillance Model a

Developmental Surveillance Model Vast majority of research is focused here

Developmental Surveillance Model And some is focused here

Developmental Surveillance Model Next to nothing on understanding/improving this process Notable exceptions: Guevaro et al. (2011); MA PELLS (Clements et al. , 2007); NE TIPS (Jackson & Needleman, 2007)

Start Filling this Gap (Part C)

Start Filling this Gap (Mental Health)

Nationally, Tracking Changes in Surveillance Practices

Nationally, Tracking Changes in Surveillance Practices

JAMA Article

JAMA Article l ASD screeners can identify ASD

JAMA Article l l ASD screeners can identify ASD 26 good/fair RCT for early intervention

JAMA Article l l l ASD screeners can identify ASD 26 good/fair RCT for early intervention No RCT screening + impact functioning

JAMA Article l l ASD screeners can identify ASD 26 good/fair RCT for early intervention No RCT screening + impact functioning Harms from screening minimal

JAMA Article l l l ASD screeners can identify ASD 26 good/fair RCT for early intervention No RCT screening + impact functioning Harms from screening minimal Harms from intervention low

JAMA Article l l l ASD screeners can identify ASD 26 good/fair RCT for early intervention No RCT screening + impact functioning Harms from screening minimal Harms from intervention low Low evidence base indicating children identified via screening respond + to intervention

JAMA Article l l l ASD screeners can identify ASD 26 good/fair RCT for early intervention No RCT screening + impact functioning Harms from screening minimal Harms from intervention low Low evidence base indicating children identified via screening respond + to intervention – Benefits of screening are questioned

JAMA Article: Mostly Harmless l l l ASD screeners can identify ASD 26 good/fair RCT for early intervention No RCT screening + impact functioning Harms from screening minimal Harms from intervention low Low evidence base indicating children identified via screening respond + to intervention – Benefits of screening are questioned

JAMA Article l Positives

JAMA Article l Positives – Considers the whole process

JAMA Article l Positives – – Considers screening as process Brings light to holes in understanding

JAMA Article l l Positives Negatives

JAMA Article l l Positives Negatives – Screening only focus

JAMA Article l l Positives Negatives – – Screening only focus Myopic view on which intervention “counts” l Only studies wherein screened ASD children receive intervention

JAMA Article l l Positives Negatives – Screening only focus l – No monitoring/surveillance Myopic view on which intervention “counts” l Only studies wherein screened ASD children receive intervention

JAMA Article l l Positives Negatives – – – Screening only focus Myopic view on which intervention “counts” Misses key clinical issue: “Screening merely creates the opportunity for treatment and services… [it] does not determine the quality and benefits of such treatment. ” (Pierce et al. , 2016)

JAMA Article l l Positives Negatives – – Screening only focus Myopic view on which intervention “counts” Misses key clinical issue Potentially damaging l l Screening does identify children with ASD Intervention does help children with ASD Dawson, 2016; Pierce et al. , 2016; Robins et al. , 2016;

Ongoing Psychometric Issues l False Negatives – l Unidentified Cases Sensitivity (i. e. , accurate identification of cases) – True Positive/True Positive + False Negative

What’s missing?

What’s missing?

What’s missing?

Robins et al. (2014)

What to do? l Psychometric suggestions: – Meta-analyses of diagnostic accuracy l – – l Compare screeners accuracy Use prevalence estimates to estimate expected rate of ASD in screener samples Revisit basic psychometric questions System suggestions – Move from which screeners are reliable to which l Individuals, clinics, etc… are reliable

What to do? l Psychometric X System diagnostics – Scale reliabilities influenced by l l Individuals Policies Personnel buy in Tracking capacity – Move from classic test methods to l Multi-level models

Where to start? l Puzzle pieces – Psychometric l l – Systems l l – Screeners Monitoring Medical Educational Data Policies Social l Community Supports

Where to start? Psychometric

Where to start? Systems

Where to start? Systems

Where to start? Social

Where to start? Data Tracking

Breakout Sessions l Psychometrics: Barriers to effective community based early identification practices

Breakout Sessions l l Psychometrics: Barriers to effective community based early identification practices Systems: Barriers to children receiving diagnostic assessments

Breakout Sessions l l l Psychometrics: Barriers to effective community based early identification practices Systems: Barriers to children receiving diagnostic assessments Data tracking: Barriers to developing effective data systems tracking children from early concern to EI/treatment

Breakout Sessions l l Psychometrics: Barriers to effective community based early identification practices Systems: Barriers to children receiving diagnostic assessments Data tracking: Barriers to developing effective data systems tracking children from early concern to EI/treatment Community supports: Barriers to effective community supports helping families move from early concern to early EI/treatment

Breakout Sessions l l Psychometrics: Barriers to effective community based early identification practices Systems: Barriers to children receiving diagnostic assessments Data tracking: Barriers to developing effective data systems tracking children from early concern to EI/treatment Community supports: Barriers to effective community supports helping families move from early concern to early EI/treatment

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