SAFE is a programme of support for families of children with autism and those waiting for a diagnosis. It has been developed with parents and uses their our unique perspective of life with a child with autism.
Dr Becky McKenzie and her team at the University of Plymouth are testing the SAFE programme with parents to learn about their experiences of taking part.
They want to gather enough data for a national trial so that they can share the benefits of the programme with other families and carers and improve support following a diagnosis of autism.
It felt good to tell someone about my ideas
Autistic boy, 11
Explaining the need for this project
Parents tell us that there is a desperate need for specific support during and following an autism diagnosis that offers a consistent approach to all family members.
We know that early intervention is very important for the development of children with autism and the wellbeing of their family members. The assessment process for an autism diagnosis can take years and families tell us about the lack of help and support during this very stressful time.
Research has shown that families waiting for a diagnosis are at high risk of developing mental health problems. Often the wellbeing of all family members is affected by the challenge of managing their autistic child’s communication, behaviour and emotional issues.
Parents have told us that support programmes need to build on their determination and strength to provide a positive future for their children and for themselves.
The research process
Becky and her team have worked closely with families to develop ideas and improve the programme.
SAFE is for all the family and includes
- 5 x 3 hour sessions delivered over 4 months
- home visits and group sessions
- sessions facilitated by family therapists trained in the SAFE programme
As part of the research, families will also receive a 2 hour follow up, 6 months after starting the programme.
The team are making good progress. They are
- recruiting autism specialist therapists
- recruiting families from 2 research centres
- developing information leaflets, consent forms and weekly journals with their family consultation group
- developing sensitive ways to work in people's homes
How this project is making a difference
The SAFE programme offers practical support to improve the daily lives of families of children with autism.
I got to hear my husband's view in a calm setting rather than in the heat of a meltdown