Recognizing the prominent role of parents in supporting their children with

intellectual and developmental disabilities (IDD), improving quality of life for these
families is an essential endeavor. While much attention has focused on the
experiences of families with younger children with IDD, little is known about the
family quality of life (FQOL) among families with transition-age youth and young
adults. We examined the FQOL ratings of 425 parents with a child between 1321
years of age with intellectual disability or autism to understand FQOL and the
factors that may shape it. Overall satisfaction with FQOL was somewhat high for this
sample, with some variability across domains. Higher FQOL ratings were predicted
by lower frequency of challenging behaviors, lower support needs, and higher
strength of parental religious faith. We present recommendations for research and
practice focused on promoting quality of life during the transition period.

Family Quality of Life During the Transition

to Adulthood for Individuals With
Intellectual Disability and/or Autism
Spectrum Disorders

Abstract
Objectives. Transition to adulthood can be a challenging time for all young people. However,
this period of change is likely to be more difficult for those with mild intellectual disabilities
(IDs) because they are often more socially marginalized, remain more dependent upon their
family, and have fewer options for future careers than their typically developing peers.
Therefore, this study examines the content and salience of worries experienced by young people
with mild ID during transition to adulthood, and whether the above disadvantages are associated
with the level of reported anxiety and their sense of self-efficacy.

Design and Methods. Fifty-two participants (1720 years) took part; 26 with mild ID and 26
typically developing adults. Of interest were potential differences between groups in (1) worries
described; (2) salience of worries; and (3) associations between self-efficacy, anxiety, and worry
within groups. Participants completed a worry interview, the General Self Efficacy Scale-12
and the Glasgow Anxiety Scale-LD.

Results. It was found that the ID group's most salient worries (being bullied, losing someone
they are dependent upon, failing in life, followed by making and keeping friends) were largely
different from their non-disabled peers (getting a job, followed by not having enough surplus
money, failing, and having to make decisions about their future choices) at this stage of
transition. Not only was there a difference in the nature of worries expressed, but the
intellectually disabled group also reported ruminating significantly more about their worries and
being more distressed by them.
Conclusion. Obtaining insight into worries at transition may help to target efforts at increasing
these young people's resilience. Clinical applications of the findings are discussed.

An anxious time? Exploring the nature of worries experienced by young people with
a mild to moderate intellectual disability as they make the transition to adulthood