in progress

Draft Research Plan

Autism Spectrum Disorder in Young Children: Screening

February 25, 2021

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Figure 1 is the analytic framework that depicts the five Key Questions to be addressed in the systematic review. The figure illustrates how screening for autism spectrum disorder in children ages 12-36 months may result in improved intermediate outcomes (access to autism spectrum disorder evaluation, diagnosis, and interventions) and health outcomes (developmental, function, and quality of life outcomes) (Key Question 1). There is also a question related to the accuracy of screening instruments used to detect autism spectrum disorder (Key Question 2) and potential harms of screening (Key Question 3). Additionally, the figure illustrates that interventions for autism spectrum disorder may have an impact on health outcomes (patient, family/caregiver, and societal outcomes) (Key Question 4) and whether these interventions result in any harms (Key Question 5).

Abbreviation: ASD=autism spectrum disorder.

  1. Does universal screening for autism spectrum disorder (ASD) in children ages 12 to 36 months improve:
    1. Access and timing of ASD evaluation, diagnosis, and ASD-specific intervention?
    2. Developmental, functional, and quality of life outcomes?
  2. What is the accuracy of screening instruments to detect ASD in children ages 12 to 36 months?
  3. What are the harms of screening for ASD in children ages 12 to 36 months and their families?
  4. Do interventions targeting young children with ASD improve developmental, functional, and quality of life outcomes?
    1. To what extent is the timing of intervention initiation (by age and in relation to the establishment of an ASD diagnosis) associated with ASD-related outcomes?
  5. What are the harms of interventions for ASD in young children?

Contextual questions will not be systematically reviewed and are not shown in the Analytic Framework.

  1. What are the disparities related to identifying and treating young children with ASD?
  2. What interventions help facilitate earlier access to ASD-related services (evaluation or intervention) for children who have screened positive for or have otherwise been identified at risk for ASD?
  3. What is the relationship between access and timing of evaluation, diagnosis, and ASD-specific intervention and health outcomes (i.e., developmental, functional, and quality of life outcomes)?

The Proposed Research Approach identifies the study characteristics and criteria that the Evidence-based Practice Center will use to search for publications and to determine whether identified studies should be included or excluded from the Evidence Report. Criteria are overarching as well as specific to each of the key questions (KQs).

  Include Exclude
Condition Clinical diagnosis of ASD  
Populations KQs 1–3: Children ages 12 to 36 months not previously known to have ASD

KQs 4, 5: Children younger than age 6 years (<72 months) with clinically diagnosed ASD

 KQs 1–3: Studies limited to:
  • Infants younger than age 12 months
  • Children with known delayed language or communication, known familial history of ASD, or for whom concerns of ASD have been raised by their parents or a clinician

KQs 4, 5: Studies limited to:

  • Older children (age 6 years or older), adolescents, or adults
  • Children with another known condition that impairs social communication or interaction and/or is associated with stereotypic movements (e.g., global delay/intellectual disability, intellectual giftedness, social [pragmatic] communication disorder, developmental language disorder, language-based learning disorder, attention deficit hyperactivity disorder)
Setting KQs 1–3: Primary care settings and primary care–referable settings, childcare and other education settings

KQs 4, 5: Clinical, educational, early intervention, or home settings

  
Screening

KQs 1, 3: Universal screening (i.e., screening the entire population)

KQ 2:

  • Screening instruments designed specifically to detect ASD, including the Checklist for Autism in Toddlers (CHAT), Modified Checklist for Autism in Toddlers (M-CHAT), and M-CHAT-Revised with Follow-up (M-CHAT-R/F), Joint Attention-Observation Schedule (JAOS), Screening Tool for Autism in Toddlers and Young Children (STAT), Rapid Interactive screening Test for Autism (RITA-T), Early Screening of Autistic Traits (ESAT), Systematic Observation of Red Flags (SORF), Young Autism and Other Developmental Disorders Checkup Tool (YACHT-18)
  • General developmental screening instruments (only if studied in relation to an ASD diagnosis) (e.g., Ages & Stages Questionnaire [ASQ], Infant Toddler Checklist [ITC], and Parents’ Evaluation of Developmental Status [PEDS])
 KQs 1, 3: Screening of preselected (including prospectively followed) or referred populations

KQ 2: Genetic or biomarker screening or imaging
Interventions ASD-specific behavioral and communication interventions, including developmental approaches, naturalistic developmental behavioral interventions, augmentative and alternative communication therapy, parent training, and social skills training, with or without other interventions.

Example interventions include: the Early Start Denver Model (ESDM), applied behavioral analysis (ABA)/Discrete Trial Training and Teaching, Pivotal Response Training (PRT), milieu teaching, and incidental teaching

 Interventions limited to:
  • Dietary approaches
  • Medication
  • Complementary and alternative medicine
  • Occupational therapy
  • Physical therapy
  • Speech-language therapy
Comparators KQs 1, 3: No screening or usual care

KQ 2: Reference standard (clinical assessment with explicit diagnostic criteria)

KQs 4, 5: No intervention/waitlist, usual care, minimal ASD intervention, or non-ASD–specific intervention (e.g., low-intensity speech therapy)

 KQs 4, 5: Active ASD intervention (i.e., a study comparing two or more active ASD interventions without a true control group)
Outcomes KQ 1a: Timing of referral/evaluation, diagnosis, and access to intervention

KQ 1b: Developmental and functional outcomes, including autism symptom severity; adaptive behavior; cognitive ability and intelligence; communication and language skills; social competence; daily living skills; problem behavior; academic placement/achievement; child quality of life; parent stress, well-being, and quality of life

KQ 2: Raw cell values (true positive, true negative, false positive, false negative), sensitivity, specificity, positive and negative predictive values, positive and negative likelihood ratio values, and area under the curve

KQ 3: Harms of ASD screening (e.g., stigma, family distress, false reassurance, and opportunity cost)

KQ 4: Developmental and functional outcomes, including autism symptom severity; adaptive behavior; cognitive ability and intelligence; communication and language skills; social competence; daily living skills; problem behavior; academic placement/achievement; child quality of life; parent stress, well-being, and quality of life

KQ 5: Harms of intervention (e.g., deterioration or worsening in adaptive behavior or autism symptom severity, parental distress, and quality of life)

Outcomes will be grouped into the following time points: immediately post-intervention, 1 to 5 months post-intervention, 6 to 11 months post-intervention, 12 to 23 months post-intervention, 24 to 35 months post-intervention, and so on (i.e., every 6 months for the first year and yearly thereafter).

 
Study design KQs 1, 3–5: Randomized clinical trials; nonrandomized and quasi-experimental designs; retrospective and prospective cohort designs

KQ 2: Diagnostic accuracy studies

 KQs 1, 3–5: Case-control studies; single case reports or single case design

KQ 2: Case-control studies, single case design
Study geography Studies that primarily take place in countries categorized as “Very High” on the 2019 Human Development Index (as defined by the United Nations Development Programme) Studies that primarily take place in countries not categorized as “Very High” on the 2019 Human Development Index
Publication language English Any language other than English
Publication date 2000 to present  
Publication type Peer-reviewed article or report Dissertation, thesis, or editorial/commentary
Quality rating Fair- or good-quality studies Poor-quality studies

Abbreviations: ASD=autism spectrum disorder; KQ=key question.