Sunday, July 30, 2017

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.

The above quote is from the JADD abstract below. It hits one of the greatest autism issues square on the head. The future of autistic adults once family members can no longer provide the care they need in varying degrees.

The Restigouche Psychiatric Hospital located on NB's northern border

far from most families in NB, and far from the autism expertise which has

been developing in centrally located Fredericton. It is very difficult for families

in the south to travel to Campbellton and back on a regular basis to maintain

ties with severely autistic adult family members.

Parents in New Brunswick fought hard for early autism services in NB and for autism trained teacher aides to work with our children in our schools but when it comes to adult autism residential care and treatment the government has not budged. Adults with severe autism requiring long term residential care and treatment are still sent, for purely political reasons, (as documented re the youth mental health facility) to the northern NB border, to the Restigouche Psychiatric Hospital in Campbellton, as far as possible from families, the overwhelming majority of whom live in central (near NB's autism expertise) and southern New Brunswick. The travel time particularly in winter or during summer construction seasons renders maintenance of family relationships sent to the Restigouce hospital extremely difficult.

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Journal of Autism and Developmental Disorders

Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults

Authors

Authors and affiliations

Renske Herrema

Deborah Garland

Malcolm Osborne

Mark Freeston

Emma Honey

Jacqui RodgersEmail author

Brief Report

First Online:: 28 July 2017

Abstract

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.

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NB Needs an Adult Autism Center and Network

"Paul McDonnell, September, 2010 "Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community. We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected. Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."