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 .
Behavioral manifestations of autism in the first year of life
In the interest of more systematic ally documenting the early signs of autism , and of testing specific hypotheses regarding their underlying neurodevelopmental substrates , we have initiated a longitudinal study of high-risk infants , all of whom have an older sibling diagnosed with an autistic spectrum disorder . Our sample currently includes 150 infant siblings , including 65 who have been followed to age 24 months , who are the focus of this paper . We have also followed a comparison group of low-risk infants . Our measures include a novel observational scale ( the first , to our knowledge , that is design ed to assess autism-specific behavior in infants ) , a computerized visual orienting task , and st and ardized measures of temperament , cognitive and language development . Our preliminary results indicate that by 12 months of age , siblings who are later diagnosed with autism may be distinguished from other siblings and low-risk controls on the basis of : ( 1 ) several specific behavioral markers , including atypicalities in eye contact , visual tracking , disengagement of visual attention , orienting to name , imitation , social smiling , reactivity , social interest and affect , and sensory-oriented behaviors ; ( 2 ) prolonged latency to disengage visual attention ; ( 3 ) a characteristic pattern of early temperament , with marked passivity and decreased activity level at 6 months , followed by extreme distress reactions , a tendency to fixate on particular objects in the environment , and decreased expression of positive affect by 12 months ; and ( 4 ) delayed expressive and receptive language . We discuss these findings in the context of various neural networks thought to underlie neurodevelopmental abnormalities in autism , including poor visual orienting . Over time , as we are able to prospect ively study larger numbers and to examine interrelationships among both early-developing behaviors and biological indices of interest , we hope this work will advance current underst and ing of the neurodevelopmental origins of autism
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 .