Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults
Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were “their needs won’t be met” (77% worried weekly), “whether they will be happy” (72% worried weekly) and “who will care for them” (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future.
KeywordsAdults Autism Family members Future Support Worry
The authors are grateful to all families who participated in this research. The research was commissioned, funded and supported by Research Autism and carried out in partnership with Scottish Autism. We wish to extend our gratitude to these charities for all of their support. We are grateful to the Newcastle University Autism Spectrum Cohort-UK study team for supporting recruitment of relatives of autistic adults to the project (see http://research.ncl.ac.uk/adultautismspectrum/ for further details, and to join the study). ASC-UK is funded by the UK autism research charity Autistica (https://www.autistica.org.uk/).
This manuscript was authored by Ms RH & Dr JR, Institute of Neuroscience, Faculty of Medical Sciences, Newcastle University, UK, Professor MF, School of Psychology, Faculty of Medical Sciences, Newcastle University UK & Northumbria Tyne and Wear NHS Foundation Trust UK, Mrs DG National Autistic Society and Northumbria Tyne and Wear NHS Foundation Trust UK, Dr EH Northumbria Tyne and Wear NHS Foundation Trust UK and Mr MO, KAYAKS Support Group, UK. All authors contributed to the design of the study and analysis of the data.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
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