In particular , there is little evidence that the identified tools would be good at detecting change in intervention studies .
The obvious gaps in available outcome measurement include well-being and participation outcomes for children , and family quality -of-life outcomes , domains particularly valued by our informants ( young people with ASD and parents ) .
This is the first systematic review of the quality and appropriateness of tools design ed to monitor progress and outcomes of young children with ASD .
BACKGROUND The needs of children with autism spectrum disorder ( ASD ) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children 's progress .
Relevant outcomes include improvement in core ASD impairments , such as communication , social awareness , sensory sensitivities and repetitiveness ; skills such as social functioning and play ; participation outcomes such as social inclusion ; and parent and family impact .
OBJECTIVES To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years .
To identify outcome areas regarded as important by people with ASD and parents .
Autism from 2 to 9 years of age.
CONTEXT Autism represents an unusual pattern of development beginning in the infant and toddler years . OBJECTIVES To examine the stability of  autism spectrum diagnoses made at ages 2 through 9 years and identify features that predicted later diagnosis . DESIGN Prospect i ve study of diagnostic classifications from st and ardized instruments including a parent interview  ( Autism Diagnostic Interview-Revised [ ADI-R ] ) , an observational scale ( Pre-Linguistic Autism Diagnostic Observation Schedule/Autism Diagnostic Observation Schedule [ ADOS ] ) , and independent clinical diagnoses made at ages 2 and 9 years compared with a clinical research team 's criterion st and ard diagnoses . SETTING Three inception cohorts : consecutive referrals for autism assessment to ( 1 ) state-funded community autism centers , ( 2 ) a private university autism clinic , and ( 3 ) case controls with developmental delay from community clinics . PARTICIPANTS At 2 years of age , 192 autism referrals and 22 developmentally delayed case controls ; 172 children seen at 9 years of age . MAIN OUTCOME MEASURES Consensus best-estimate diagnoses at 9 years of age . RESULTS Percentage agreement between best-estimate diagnoses at 2 and 9 years of age was 67 , with a weighted kappa of 0.72 . Diagnostic change was primarily accounted for by movement from pervasive developmental disorder not otherwise specified to autism . Each measure at age 2 years was strongly prognostic for autism at age 9 years , with odds ratios of 6.6 for parent interview , 6.8 for observation , and 12.8 for clinical judgment . Once verbal IQ ( P = .001 ) was taken into account at age 2 years , the ADI-R repetitive domain ( P = .02 ) and the ADOS social ( P = .05 ) and repetitive domains ( P = .005 ) significantly predicted autism at age 9 years . CONCLUSIONS Diagnostic stability at age 9 years was very high for autism at age 2 years and less strong for pervasive developmental disorder not otherwise specified . Judgment of experienced clinicians , trained on st and ard instruments , consistently added to information available from parent interview and st and ardized observation
In particular , there is little evidence that the identified tools would be good at detecting change in intervention studies .
The obvious gaps in available outcome measurement include well-being and participation outcomes for children , and family quality -of-life outcomes , domains particularly valued by our informants ( young people with ASD and parents ) .
This is the first systematic review of the quality and appropriateness of tools design ed to monitor progress and outcomes of young children with ASD .
BACKGROUND The needs of children with autism spectrum disorder ( ASD ) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children 's progress .
Relevant outcomes include improvement in core ASD impairments , such as communication , social awareness , sensory sensitivities and repetitiveness ; skills such as social functioning and play ; participation outcomes such as social inclusion ; and parent and family impact .
OBJECTIVES To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years .
To identify outcome areas regarded as important by people with ASD and parents .