Abstract
Quality of life is often relatively lowered in families of children with additional needs, and this may be particularly the case where additional needs are accompanied by an autism spectrum disorder (ASD). Here we explore the effects of diagnostic status specifically, comparing families with children with an ASD diagnosis with others who a) have additional needs but no signs of ASD; and b) have additional needs and signs of ASD but no diagnosis. Mothers (n = 76) of children with additional needs completed standardised questionnaires about quality of life, stress, service provision, child behaviour and presence and severity of ASD traits. In addition, a group of mothers of typically developing young people (n = 17) completed standardised questionnaires on individual and family quality of life and on the behaviour of their son or daughter. Mothers of typically developing young people had significantly higher individual and family quality of life scores than each of the three other groups. Increased severity of ASD was associated with increased maternal stress, which in turn was associated with decreased family and maternal quality of life. The group reporting the lowest quality of life and the highest stress were the mothers of individuals with signs of ASD but no diagnosis. This pattern did not seem to be explained by lack of access to services, or rates of intellectual disability or challenging behaviour in this sub-group. The finding that poor quality of life and high stress was most apparent in the sub-group of mothers with children who had signs of ASD but did not have a diagnosis of ASD suggests that an interesting topic for further investigation is whether receipt of a diagnosis itself can positively influence quality of life and levels of maternal stress.
Highlights
Autism spectrum disorder (ASD) refers to a constellation of conditions united by difficulties with typical social interaction and communication abilities, and the presence of restricted and repetitive behaviours as well as sensory hypo- and hypersensitivity [1]
Differences between the two groups might explain why some young people receive a diagnosis and others do not, and reveal whether the mere presence of a diagnosis might beneficially impact on maternal stress and family quality of life
In terms of quality of life and stress, results suggest that the presence of a young person with additional needs within the family has a detrimental effect on these and that when the young person has an ASD the effect is more marked
Summary
Autism spectrum disorder (ASD) refers to a constellation of conditions united by difficulties with typical social interaction and communication abilities, and the presence of restricted and repetitive behaviours as well as sensory hypo- and hypersensitivity [1]. Lower maternal mental health has been reported in longitudinal research [10] Child characteristics such as challenging behaviour or intellectual disability have been reported as major stressors [11,12]. Reasons for stress under these circumstances may include lack of access to appropriate support services, or systematic differences between children and young people who receive and do not receive an ASD diagnosis. Lack of a definitive explanation for the difficulties being experienced by the child or young person, and their family, may be a stressor. The Child Behaviour Checklist [29] is a parent/carer-completed scale and reports the activities, behaviours and functioning of the young person as previously described in more detail in Paul et al [30]. We used the 1991 version of the scale to allow future comparison with a large dataset that collected using this scale in the Edinburgh High Risk Study [31]
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