A programme designed to support parents and carers of autistic children has significantly increased the number of people it can help since moving online.
The Cygnet programme, run by Barnardo’s and funded by NHS Lothian’s Children and Adolescent Mental Health Services (CAHMS), helps people understand autism and access a support network.
During the pandemic, it was forced to move away from face-to-face sessions. Since then, it has helped around 200 people, six times more than it could previously reach in person, to provide vital care and support. Simon Robinson, Cygnet facilitator from Barnardo’s, explains why the programme is so important:
“On the surface of having an autistic child people will describe seeing what look like tantrums, meltdowns and bad behaviours. However, it’s important to remember these are often more like panic attacks where a child is distressed by their environment. Throughout the programme, we explore how parents and carers can help their child or young person by making their world more autistically appropriate.”
“The programme is very personal to each individual, so I was initially reluctant to make the transition to online. However, because we can now host more sessions, more frequently and at more convenient times we’re now helping more people than ever before, which is amazing.”
In the Lothian’s it’s estimated that there are 7,400 people with an autism diagnosis. The Cygnet programme was developed alongside young people, parents and practitioners to increase parents and carer’s knowledge of autism and create an inclusive support network for them.
Commenting on the success of the programme, Lisa Canale of NHS Lothian’s CAMHS said: “It is great to see so many people benefitting from the redesign of this support programme, which is the result of a lot of hard work and dedication from the team at Barnardo’s. As we look to recover from the pandemic, it’s important we continue to look at new ways to deliver care and partnerships we can use to reach the people in our communities who need help and support.”
The Cygnet programme covers a variety of topics including sensory issues, communication and understanding behaviour better over six weeks. There is a 2-hour session every week in the morning or evening.
Sharon May, a mum from Edinburgh who attended the Cygnet online programme, said: “I was in tears after the first session as it was the first time I’d received any help or support like that. The programme was so reassuring as it reaffirmed that my daughter is autistic and that I wasn’t going mad.”
“I loved the fact that the course was run online as you don’t need to organise childcare and there was a high chance you could go to one of the sessions. It can feel like we live in quite a traumatic household, never knowing when our daughter will have a meltdown, but if she did have one, being online meant one of us could still attend.”
“The tips we received were revolutionary and the Cygnet co-ordinators were cracking. They were really down to earth, not in the least patronising and their depth of knowledge was incredible”.
Sandra Bruce, a mum from West Lothian who also attended the course, said:“It worked really well for me and my husband and helped us to juggle our four kids. It was so accessible, and I could even have it on in the background while I had other things going on at home.
“The information wasn’t overwhelming and when people had their cameras on you could think to yourself – oh that’s another normal family and I’m not alone in this.
“I think the main benefit for me was that my husband could watch it too and it was the first time that he had been involved. I used to attend these meetings by myself and then fill him in but it never worked. Now I feel like we both have a greater understanding of our child.”
For more information about Cygnet, please check out the website here
