Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain.
Adults with autism in Spain have bleak objective life quality because supports vanish after school.
01Research in Context
What this study did
Saldaña et al. (2009) asked adults with autism in southern Spain about their quality of life. They looked at jobs, health, friends, and community help.
The team used a survey. They wanted to see how life was going after school services ended.
What they found
Most adults had no jobs, no friends, and little medical care. Community supports were almost zero.
The study calls the results 'extremely poor' across every area checked.
How this fits with other research
Billstedt et al. (2011) seems to disagree. They also asked adults with autism about life quality and found 'encouragingly positive' answers. The gap is real but explainable: Eva’s group was still living with parents and had early diagnoses, while David’s group was pulled straight from the community where help was missing.
Knüppel et al. (2018) adds a twist. They asked both the adult and a parent in Denmark. Self-scores were a little higher than proxy scores. This tells us one viewpoint is not enough.
Kuhlthau et al. (2010) and Potvin et al. (2015) show the same low scores in children. The pattern starts young and, as David shows, continues without support.
Why it matters
If you serve teens or adults, do not assume poor scores mean the person is ‘depressed’. Ask where the supports are. Add job coaching, social clubs, and medical check-ins. One extra service can flip a score from hopeless to okay.
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02At a glance
03Original abstract
Subjective and objective measures of quality of life (QoL) were obtained for adults with autism spectrum disorders (ASDs) living in Andalusia (Spain). Seventy-four families responded to questionnaires about objective QoL indicators such as employment, health, adaptive behaviour and social network, and were asked to act as proxies for subjective QoL measures. Outcome on objective QoL was extremely poor. Social networks were most frequently composed of family members. Community-oriented resources were absent in most cases. For two-thirds of the families, the ability to act as proxies for subjective QoL was seriously limited by the participants' poor social and communicative abilities. The results are indicative of the need for additional support to families of adults with ASD and increased community-based resources. Further conceptualization of indicators and measurement of subjective QoL in individuals with severe disabilities and ASD is also needed in order to include their own perspective in the evaluation of service provision.
Autism : the international journal of research and practice, 2009 · doi:10.1177/1362361309103792