Links between Autism Spectrum Disorder Diagnostic Status and Family Quality of Life
15
Citation
38
Reference
10
Related Paper
Citation Trend
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.Keywords:
Daughter
Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched.
Cite
Citations (1,547)
Pervasive developmental disorder
Cite
Citations (4)
There has been a growing push for the Autistic and autism communities to be more actively involved in autism research. From January 2021, the journal
Cite
Citations (4)
Autism is an innate or developmental difference that occurs in the first years of life. While the number of individuals with autism in the world is increasing day by day, the importance of what should be known about autism also increases. However, it is still not possible to say that this information is sufficient. The definition of individuals with autism and their health problems, what autistic individuals do to express themselves, and who the individuals with autism are and their representatives are important. Some basic points such as how to raise awareness about the lives of individuals with autism have still not been overcome. The main theme of this study is how the media addresses the issue of individuals with autism, their problems, and needs. The research question of the study is how to read the reflections on autism through the media.
Theme (computing)
Cite
Citations (0)
This article reflects on how autism interacts with the Christian faith and the Church. From considerations of the lived experience of the author’s son, who has autism, tensions are noted between the two main theoretical stances which are commonly applied to autism and how this has a bearing on a ‘theology of autism’. Of these two stances, it is suggested that ‘Intense World’ theory is more useful because it treats autistic people with greater empathy; ironically, an aspect that an ‘impaired’ Theory of Mind suggests they lack. This has implications for how the Church can learn from and be enriched by neurodiverse people.
Cite
Citations (4)
We present the case of a mother and daughter diagnosed in our unit with neurofibromatosis 1 (NF-1). The diagnosis was first made in our Plastic Surgery Department, and, surprisingly, the daughter was diagnosed first. We find it both interesting that the mother and daughter have very different course of disease and disturbing that the diagnosis was not made earlier, which could have led to better results with a significantly smaller emotional burden on the patient.
Daughter
Cite
Citations (3)
Cite
Citations (45)
ABSTRACT: Until recently, treatment for children with autism involved housing them in hospitals for the developmentally disabled. Today more slates are returning children with autism to their home communities, and more parents are choosing or are being required to keep their children with autism in their homes. Laws were developed to ensure that children with autism receive some form of education, often through the local school system. School nurses, who may not have experience working with children with autism, may feel uncertain about how to provide support for the child with autism. Approximately 300,000 persons in the United States have autism or display autistic behaviors. About one‐third are under age 21. People with autism come from all socioeconomic classes. Males are four times more likely to be affected by autism than females. People with autism can be expected to live a normal lifespan. (J Sch Health. 2001;71(3):96–100)
School nurse
Cite
Citations (13)
The genetic liability for autism appears to be expressed not only as the full syndrome of autism, but in milder, qualitatively similar characteristics that collectively have been referred to as constituting the broad autism phenotype. Identification of components of the broad autism phenotype that segregate independently in relatives of autistic individuals may provide an index of genes that, when present together, may interact to produce autism. Inclusion of information on the broad autism phenotype in relatives, in linkage studies of autism, may provide a potentially important, complementary approach for detecting the genes causing this condition. Am. J. Med. Genet. (Neuropsychiatr. Genet.) 105:34–35, 2001. © 2001 Wiley-Liss, Inc.
Heritability of autism
Genetic linkage
Cite
Citations (134)
Stigma
Cite
Citations (9)