Links between Autism Spectrum Disorder Diagnostic Status and Family Quality of Life

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.

Quality of Life in Caregivers of Children and Adolescents with Autistic Spectrum Disorder: Development and Validation of the Questionnaire

“…The social, personal, and financial impacts that these families experience make living with autism an arduous, challenging, exhausting, and sometimes painful task. A family with an autistic member goes through unique experiences, becoming vulnerable to social integration, predisposed to stress and family dysfunction [ 12 , 37 , 47 ]. It is not uncommon among ASD parents to give up their jobs to take care of their children [ 48 , 49 ].…”

“…Some studies show that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting their quality of life (QoL) [ 4 , 5 , 6 ]. Thus, it is necessary to evaluate the QoL of their caregivers [ 7 , 8 , 9 , 10 , 11 , 12 , 13 ].…”

“…Some instruments were used to assess QoL in ASD children and adolescents and their caregivers. Most studies used generic instruments such as HRQoL [ 5 , 18 , 19 , 20 , 21 ]; the U.S. National Survey of Children’s Health (NSCH), which contains some items related to QoL [ 22 ]; the Pediatric QoL (PedsQL) Inventory [ 11 ]; and WHOQOL-BREF [ 12 , 22 , 23 , 24 ]. However, to our knowledge, there are no questionnaires specifically designed to evaluate QoL in parents or caregivers of ASD children and adolescents in Brazil.…”

The experiences of fathers who have a child with autism spectrum disorder: from birth to adulthood

“…It is characterised by: deficits in social communication; social interaction and restricted and repetitive patterns of behaviour (American Psychiatric Association, 2013). The challenging behaviours that are often associated with ASD can be extremely debilitating for families (McKechanie et al, 2017). Recent estimates of the prevalence of ASD are higher than 1 per 100 (Brugha et al, 2016;McConkey, 2019).…”

Kualitas Hidup Sibling Anak dengan Autis

“…Selain itu, sibling juga cenderung pendiam ketika berada di rumah, tetapi lebih ceria ketika berada di lingkungan luar rumah dengan teman sebayanya. Penelitian McKechanie et al, (2017) juga menunjukkan hasil bahwa kualitas hidup sibling anak dengan autis tidak terganggu. Hal ini disebabkan karena sibling mampu menyesuaikan diri dengan kondisi saudara mereka yang mengalami autis.…”