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Autistic parents' views and experiences of talking about autism with their autistic children.

ABSTRACT:

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Previous research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child's needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).

SUBMITTER: Crane L

PROVIDER: S-EPMC8111227 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Background and aimsThe diversity of the autistic population seeking professional services and education in the United States has increased. As the diagnosis of autism increases among the Chinese American immigrant population, there is also an increasing need to learn about this population and provide appropriate intervention and education for this group. However, current education and intervention provided for autistic individuals tend to be culturally blind. Gaps were found in our understanding of the cultural context and its relationship with the education mechanisms among Chinese American autistic families. The current study intends to investigate how Chinese American parents perceive the education materials and intervention strategies received by their autistic children as well as their experiences and needs in the education process.MethodSemi-structured interviews were conducted among 10 Chinese American parents (one father and nine mothers) online. They all had children who had a formal diagnosis of autism spectrum disorder and received some intervention or education. Thematic analysis was used to analyse the results.ResultsThe study suggested that most Chinese American parents were satisfied with the current education materials and intervention strategies provided to their autistic children. Due to cultural-related stigma, parents differ in their perceptions of children's autism diagnosis and characteristics as well as their expectations of children's culturally sensitive education. A theoretical model was created to provide culture-centered interpretation of the interconnected relationship between their pre- and post-immigration contexts and parenting attitudes.ConclusionsCulture plays a critical role in understanding Chinese American parents' experiences, needs, and expectations of culturally sensitive education for their autistic children. Interconnected relationships were found between contexts and parenting attitudes, which were largely influenced by cultural-related stigma.ImplicationsSuggestions and implications were provided for institutions and professionals working with Chinese American families and children. It is critical for them to learn about the experiences, needs, and attitudes of Chinese American parents to provide Chinese American autistic children with more appropriate and culturally sensitive education.

Project description:Background and aimsA high rate of children in mental health services have poor language skills, but little evidence exists on how mental health support is delivered to and received by children with language needs. This study looked at parental experiences, asking parents of children with speech, language and communication needs (SLCN) about their experiences seeking help for their children's mental health. We were particularly interested on the experiences of parents of children with Developmental Language Disorder (DLD), a specific SLCN that remains relatively unknown to the general public.MethodsWe conducted an online survey of 74 parents of children with speech, language and communication needs (SLCN). Survey respondents included parents of children with a range of difficulties, including DLD, autism, verbal dyspraxia, global intellectual delay, a history of hearing problems, and SLCN without a primary diagnosis. Survey respondents were asked what sources of support they had accessed for their child's mental health and to provide comments on what was good and what was not good about this support. We then conducted 9 semi-structured interviews of parents of children with DLD about their experiences. These were parents of children with DLD aged 7 to 17 years, from across a range of educational settings, and with a range of present mental health concerns.ResultsContent analyses of the survey responses from parents of children with SLCN highlighted three broad factors of importance to parents' experiences: relational aspects of care, organisational aspects of care, and professionals' knowledge. Thematic analyses of the interviews of parents of children with DLD identified 5 themes: the effects of language problems on the presentation of distress; the role of the school environment; the role of key professionals; standard approaches to mental health support might not be appropriate; and the role and impact on parents. Parents expressed concerns that their children's mental health problems and need for support would not be recognised, and felt interventions were not accessible, or delivered in a manner that was not comfortable for their children due to high reliance on oral language skills. Some parents were left feeling that there was no provision suitable for their children.ConclusionsParents of children with SLCN face barriers accessing support for their children's mental health, including a lack of professional knowledge about their children's language needs. Parents argued that language and communication needs can significantly affect the delivery and success of psychological therapies and interventions. Systematic research is needed to understand how to successfully adapt services to make them accessible to children and young people with language needs, and to ensure that mental health problems are detected in children with language difficulties. Increased knowledge about language disorders such as DLD, and access to speech and language therapy expertise, is needed amongst professionals who work to support children's mental health.

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Autistic parents' views and experiences of talking about autism with their autistic children.

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