Developing SFSC for parents of children with ASD

Trizia Wells is an SFSC facilitator based in the Calderdale area.  She worked with co-facilitator Cath Streeting to develop a specially adapted version of SFSC for parents of children with autism spectrum disorder.

In 2009, Calderdale local authority endorsed the Strengthening Families Strengthening Communities programme by providing funding for over 30 officers from a wide range of teams to undertake the training.  I was lucky enough to be in a cohort that was trained by Dr. Marilyn Steele – it was a genuinely uplifting and inspiring experience and I couldn’t wait to get started on my first course.

Calderdale continued to support the programme, working closely with the Race Equality Foundation to ensure that the course was offered to a range of parent groups across the authority in a way which was well planned and adequately resourced.

The first Strengthening Families Strengthening Communities programme was delivered in 2010, and it was an early aim of one Family Services Area Manager, Lynn Powell, to offer an adapted programme to parents of children with behaviours on the autistic spectrum.   Such families may have a full diagnosis, or may be at the beginning of the long assessment process.  They can fall into the remit of social services, health teams, Special Educational Needs (SEN) or family support services

And so the pilot SFSC program me for parents of children on the autistic spectrum (ASD) was born!  Not only was this Calderdale’s first foray into adapting the programme for specific needs, it was also my first as a facilitator, so it was in at the deep end for everyone!  The pilot presented a great opportunity to work more closely with colleagues from different services.

Lynn Powell began discussions in 2010 to involve all the relevant partners.  Several meetings later, a delivery plan was agreed in April 2011, to bring together Family Support Services, the Disabled Children’s Team (DCT) and the Parent Partnership Service (PPS), which supports parents of children with SEN.

The Disabled Children’s team released a member of staff (Vicky) for one day a week to help plan and deliver relevant adaptations.  Parent Partnership provided the venue (and me!), while Family Support pledged to provide a budget for the meal, and their most experienced facilitator, Cath Streeting, who co-facilitated Calderdale’s very first SFSC programme in 2010.   I was relieved and pleased to be working with such an experienced lead facilitator who could manage all these aspects– as a newbie I really came to appreciate her experience as well as that of Beverley Thompson from the Race Equality Foundation.  Parents were recruited through our teams, and the programme began in October 2011.

We emphasized to parents during the pre-course questionnaires, and at all points throughout the programme, that this was a pilot and we needed to learn from them about the aspects that needed adapting to meet the particular needs of autistic children.

We started out by delivering the sessions as they would be done in the core programme. Cath and I would facilitate the session between us.  Vicky from DCT was present at each session and was able to bring her specialist knowledge to bear on making ASD friendly amendments to the programme.  She responded to parents’ concerns and questions as they arose.  Beverley was able to ensure that the core SFSC ethos did not get lost in the process and we all would take notes, which we then discussed at the afternoon planning sessions.  In the early stages it was sometimes a challenge to stay true to the SFSC ethos and so Beverley’s calming presence was invaluable. She was very reassuring when I worried that we were going over the allocated time, coming as I do from a teaching background where everything has to adhere to a strict timetable!

Afternoon planning sessions were spent in reflection and adjusting the following week’s timetable.  Sometimes Vicky would create or collate resources or activities for the following week if we felt more input was required to support the ASD aspect. As these were presented to parents, their usefulness was discussed, and Beverley would again make notes on how they could be mapped onto the core programme.

The discussion element which is so central to SFSC was absolutely core to the pilot as we needed to really understand why certain features of the programme were inappropriate for children with autism and how they could be adapted to be fully inclusive.  This meant that many sessions over ran, but the extra time was very worthwhile, as one parent commented: “…the time allocated (to the core programme) is least useful…parenting a child with ASD is very different and a lot of group participation is needed…”

All aspects of the programme were covered – many of the parents had non ASD children as well and were able to offer many suggestions for adapting the activities for their ASD children.  They clearly appreciated the different experiences within the group and felt that parents with only non ASD children might not have been as understanding of the difficulties they faced.

Probably the most significant adaptations we made to the SFSC programme were around managing anger.  Vicky provided activities and handouts on helping children with ASD to recognize and manage their anger.  We placed less emphasis on rewards and incentives because children with ASD are often not motivated by the same things, or able to make the same link between cause and effect as can non ASD children.