What are the views of autistic young people, their parents and professionals on which daily life skills need to be taught, and what are the promoters and barriers to achieving such skills?

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Attard, Yanika (2022). What are the views of autistic young people, their parents and professionals on which daily life skills need to be taught, and what are the promoters and barriers to achieving such skills? University of Birmingham. Ph.D.

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Abstract

There is a lack of research on why a gap exists between the verbal and cognitive abilities of autistic young people and their level of independence skills. Literature suggests that relative to their non-autistic peers of a similar age and intellectual ability, many autistic adults fail to achieve desired outcomes in various areas of independent living. They often lack friends, have lower rates of post-secondary education, are seldom in full-time employment, and continue to live with their parents. A recent report by the Office for National Statistics in the UK (2021) revealed that only 22% of autistic people were in employment – the lowest among other special needs groups, and 75% still lived with their parents. The literature revealed a need to explore the views of key stakeholders on what supports the development of independence skills. This study was conducted in Malta and gathered the views of autistic young people, their mothers and fathers, and professionals who specialised in autism. They were asked which daily living skills (DLS) should be prioritised and what they felt the main promoters and barriers to developing such skills were. A convenience sample of 34 participants was recruited, 9 autistic young people aged between 16 and 30 years, with good spoken language and cognitive abilities, their mothers (n=9), their fathers (n=7), and 9 autism professionals.

Q sort methodology was used to identify the views of the participants on what helps or hinders the development of DLS. In-depth interviews were carried out with eight participants, two from each of the four different groups. A DLS checklist consisting of 50 items was developed and used to identify which DLS participants believed were high or low priority for independence. Personal hygiene, money and budgeting skills, and household safety were rated high priority by all stakeholders. Driving their own car, and skills related to this, were rated low priority by the young people and fathers. Mothers, fathers and professionals all agreed that caring for clothes was also a low priority relative to other areas. The Q sort revealed 7 distinct subjective viewpoints, four for the Promoters, and three for the Barriers - two of which were bi-polar. The dominant Promoter Factor was that parents should teach DLS, despite the challenges, and have professional support. The dominant Barrier Factor was related to parents’ beliefs, attitudes and fears, and the fact that DLS were often not taught through direct teaching. Interview data revealed that DLS acquisition is not merely about skill building, but many other factors affected this, such as their experiences since childhood, particularly feelings of failure.

These findings suggest that more communication is needed between stakeholders to identify their different perspectives and to develop a consensus on what might be worked on and how. Recommendations are made on the basis of this study to support the development of DLS in young autistic people. These include teaching Executive Functioning (EF) and DLS directly and from a young age, addressing their past negative experiences, acknowledging the culture, beliefs and attitudes of the family system, and helping the young people to embrace autism as part of their identity. Recommendations for the future include developing methods to reach a consensus among stakeholders; examining how DLS are best taught and developed; and longitudinal studies following up young autistic people into adulthood to find out which DLS they still need support with and from whom, and which skills they can do unaided.

Type of Work:

Thesis (Doctorates > Ph.D.)

Award Type:

Doctorates > Ph.D.

Supervisor(s):