High Early Parental Expectations Predict Improved Independent Living and Quality of Life for Adults with Autism Spectrum Disorder

Background:  

Previous studies examining the effect of parental expectations of children with autism spectrum disorder (ASD) have shown that expectations predict outcome, at least in the short –term (Chiang et al., 2012; Taylor et al., 2011). However, these studies provide conflicting findings on whether expectations serve as predictors across domains (educational, vocational, etc.), and no study to date has studied the relationship between parental expectations and long-term outcomes. The current study examined the relationship between early parental expectations of independence (living, education, and relationships) and long-term outcomes in these same children 20 to 40 years later. 

Objectives:  

The present study examined how early parental expectations relate to long-term outcomes in adults with ASD. It was predicted that higher parental expectations in childhood would relate to better outcomes in middle adulthood, regardless of childhood functioning. 

Methods:  

As part of a longitudinal follow-up study of families seen by the University of North Carolina TEACCH Autism Program between 1965 and 1999, 52 archival records of childhood parental estimates of current adaptive functioning and future adult outcome were obtained.  Future estimates of adult outcome included expectations regarding living situation (e.g., group home, home, or independent), education level (e.g., special education, high school, college), and relationships (e.g., never date, date but not marry, married, married with children).  These predictions were combined to produce an overall estimate of parental expectations.  We compared these expectations to measures of adaptive behavior (Waisman Activities of Daily Living) and quality of life in the same children 20 to 40 years later.

Results:  

A hierarchical linear regression with a stepwise progression was conducted using adult W-ADL as the dependent variable.  The number of years between childhood and follow-up study (M = 29 years; range: 20-41 years) and parental estimates of childhood adaptive functioning (as a proxy for developmental level) were entered first into the model with adult outcome expectations  as the last predictor to examine the impact of parental expectations of adult outcome after controlling for these other variables.  Parental outcome expectations during childhood significantly predicted adult adaptive behavior (R²_change=.07, p=.04).   The same analysis was performed on quality of life with parental outcome expectations during childhood significantly predicting adult quality of life (R²_change=.10, p=.01). 

Conclusions:  

Taken together, these findings suggest that higher parental expectations during childhood lead to higher levels of adaptive behavior and quality of life in adulthood.  This was evident after controlling for parental perception of childhood adaptive behavior as a proxy for current developmental level and the length of time between childhood and adulthood evaluation.  Given generally poorer outcomes for individuals with ASD, one might expect higher parental expectations to result in lower ratings of quality of life given the disparity between the expected and the actual outcomes.  However, the current findings suggest that parental expectations are not only related to quality of life, but may be important for improving the level of independence in adulthood.  These results suggest that parents should be encouraged to hold high expectations for their young children with ASD.