Post diagnostic support and knowledge sharing within Argyll and Bute
Clare Brogan, Autism Advisor, Scottish Autism
The Get Set 4 Autism (GS4A) project provides post diagnostic support to parents and carers of children and young people in Argyll and Bute under the age of 19 with a diagnosis of autism. The project commenced in February 2015 in partnership with Autism Argyll and has been funded for five years by The Big Lottery.
Family support in rural Scotland
It is widely recognised that from the point of diagnosis, families need access to support and good quality information. In Argyll and Bute, the remote and rural geography of the region can contribute to an increased sense of isolation at what can be an already difficult time for families. GS4A recognises the local context, provides a positive and proactive start for families and will support the ongoing needs of the family. One of the key aims is to enable parents by building skills, knowledge and resilience within families so that they can be proactive in their parenting, nurturing and support of their child or young person.
GS4A combines use of the comprehensive online support programme Right Click with face-to-face home visits, emails and phone call support from Autism Advisors. Over the contact period, the advisor signposts parents and carers to sources of ongoing support and information. The model involves family referral by locally-based diagnostic teams at the point of diagnosis, or self-referral using an online form. An advisor arranges an initial home visit, and up to four supportive visits are arranged around the Right Click (five week) online programme, however this model remains flexible to allow information and support to be tailored to the needs of each family. Some families choose not to engage with Right Click and some require more or less visits depending on their circumstances and the issues faced at the time. Access to GS4A and Right Click is free and the duration of a visit can range from one hour to several hours.
The advisors use a brief questionnaire to collect data before and after their period of involvement with a family. Parents are asked to rate their own knowledge of autism, their feelings about coping and resilience in raising an autistic child, the frequency and intensity of daily difficulties related to their child’s behaviours, and a measure of parental wellbeing. This information provides an indication of the issues a family is facing at the point of diagnosis, and provides a second picture of the family situation after support from the GS4A project. To date, the project has supported 62 parents with data indicating a clear trend of positive change across all self-report measures. These results clearly demonstrate that this model of post diagnostic support results in increased parental knowledge of autism and child understanding, and highlights an increase in the confidence and capacity of parents to teach their child or young person the range of skills and coping strategies needed during key aspects of their development.
Library of sensory resources
From this strong foundation, three further resources have been developed including a library of sensory equipment which includes weighted blankets, weighted jackets/waistcoats, ear-defenders and wobble cushions. These resources can be made available to families via the GS4A advisors and their use often illustrates that the child or young person is coping with sensory issues which parents and/or professionals may not always be aware of. Families are given the opportunity of a free loan of products to try over a number of days or weeks, which they can take into different settings including school and on holiday. This gives families confidence in a product before they consider buying it (which is particularly useful when items are expensive) and advisors can also signpost to possible sources of funding that might help with purchase costs.
Go For It companion guide
To accompany the Right Click programme, a companion guide and notebook has been designed for use by parents with a young child. Titled ‘Go For It’, the guide encourages note-taking and reflection as part of the online learning experience. It supplements online content with a comprehensive workbook supporting further exploration of Right Click material and helps parents develop a better understanding of autism and their own child. Go For It is a flexible resource that can be used in part or as a whole by parents and advisors, and has been positively received.
Professional learning resource
Together with the funder (The Big Lottery), the GS4A project has developed an online learning resource for professionals in Argyll and Bute, with content which compliments Right Click material. This resource is designed to promote a shared understanding of the impact of autism on family life for professionals working alongside these families, and develop empathy for the autistic family experience. The online programme is strongly underpinned by parent voice and includes video contributions from families involved with the GS4A project who share many aspects of their experiences of parenting an autistic child. This resource has recently been launched in Argyll and Bute and will hopefully be taken up by professionals across Health, Education, Social Work and the Third sector, and may potentially be incorporated into training and service development.
An important contribution of the GS4A project is the sharing of information about the project set up and the ongoing development of this practice model. This dissemination has taken many forms including close working with colleagues within Scottish Autism and a presentation at the annual Staff Conference. The sharing of project knowledge at a national level recently occurred during a poster presentation at the Autism Europe Conference in Edinburgh last Autumn.
Over the past six months, GS4A has held seven information events in various locations across the region, taking in some of the more remote locations (Islay, Campbeltown, Oban, Lochgilphead, Dunoon, Rothesay, and Rhu/Helensburgh). These events raised the profile of the project within the communities and gave an opportunity for parents and practitioners to come together within an informal setting to hear about the work of the project, the wider work of Scottish Autism, and share information amongst themselves about what was happening in that local area. As a result, there are new parent support groups and stronger working relations between parents, professionals and the GS4A advisors.
The GS4A advisors regularly link with professionals in public and the third sector within Argyll and Bute to establish networks for information sharing. Examples include close working with those in the Diagnostic Network Teams (comprised of Paediatricians, Educational Psychologist, Speech and Language Therapists, Occupational Therapists), Community Child and Adolescent Health Teams, Social Workers, Advisors for Self-Directed Support, Advisors in the Department of Work and Pensions, Royal Navy Welfare services, Carer’s Support, as well as nursery, primary and secondary school teachers and support staff. All of these communications (and there are too many to mention here) raise the profile of the needs of people on the autism spectrum and their families and contribute to the synthesis and dissemination of applied autism knowledge within a variety of contexts and settings.
In summary, the Get Set 4 Autism Project has proven a successful model of family support within rural areas. By seeking to enable and empower families, this project has sought to foster more inclusive and dignified family and community experiences for people on the autistic spectrum.