A story by PLUS (Forth Valley) Ltd
The Aspergers Support Project (ASP) enabled children and young people to meet, interact and take part in activities with other young people with Aspergers. They built relationships, made friends, and to feel more included and were encouraged to developed coping and life skills.
What Asperger Project did
We reopened in June 2020 and shortly afterwards introduced a weekly online Dungeons and Dragons session which allowed us to get some services up and running, without the concern of social distancing. This continues to run with approximately 7 teenagers with 2 staff members supporting this.
Due to the complex nature of lockdown and the impact this had on the children, we engaged with each parent over the months of June and July 2020 to find out how home life was and how we could provide some support. We believed that we had to take a more holistic approach to supporting the young people and it was agreed that we would reintroduce our parent support sessions online and to date there has been 12 sessions facilitated. Phone calls have remained a permanent fixture with calls taking place at least monthly, but for some, it is before and after each session to provide more in depth feedback and personalised support.
In person sessions restarted in August 2020, running on a fortnightly basis. These were able to run until Christmas, when the more restricted lockdown then meant the group had to stop.
In January 2021, the group was split into 3 smaller groups and we then facilitated online sessions for them where we were able to work alongside the Macrobert Centre to create short stories and films, which ran until the end of March. There was then an 'Incredible Watch Party' where the participants were able to join online to watch their finished pieces of work and celebrate their success.
In May 2021, we were able to restart the in person sessions and these are now running on a fortnightly basis.
What PLUS (Forth Valley) Ltd has learned
We have learned to adapt to working online and attempted to keep the project relevant and engaging. Each young person has taken to this so differently, with some showing amazing progress and others who haven’t been able to engage at all.
As you will see, the number of young people who we have recorded as yet to experience progress is significant. In fact, we would go further to note there are serious regressions in some of the young people who used to participate but haven’t since lockdown began. There are a number of reasons for this however it often centres around their anxiety in relation to covid. Such as, not wanting to leave home, concern around being indoors and general low moods. Some dislike being online, with 2 having disengage fully with school because of this.
The project coordinator had concerns about moving the project online. Reducing the session to 1 hour in length but increasing the frequency to weekly did help provide more structure as did the project with the Macrobert Centre. Kate is pleased with how the young people engaged however can’t wait to be back working face to face. We have learned that we cannot underestimate the impact of being in the same room as others for building support and the positive impact the group has on relationships, creating opportunities and providing consistency for the young people. There are several who are keen to return, so it will be great to be able to welcome them back.
How PLUS (Forth Valley) Ltd has benefitted from the funding
We have benefited from this funding as it allowed us to bring the staff member back from furlough to begin to reengage with the young people and their families. We were able to focus on support to parents and carers who have also been really isolated during the pandemic, providing them with an outlet for their worries and concerns which developed over the lockdown period. We were able to use our funding to redesign our service to go online with flexibility to reduce the time length, but meet more frequently and generally explore new ways of working. Our reputation among these families remains high and it has been positive to hear feedback from families who children joined over the year, despite not meeting anyone in person for the first part of their journey with us. What was also highlighted to us however, was the fact that in the case of many families, we were the only connection they had out of their families in the early stages of the pandemic. The only organisation who took time to reach out to them and to let them know we were here - despite our staffing being highly restricted. As one family commented ‘Thank you again for adding a more personal touch and actually being there for us, whether you provide care or you don't.'
33 children and young people across the Forth Valley will regularly attend Asperger support groups and participate in activities that they have helped plan.
26 young people were supported across the online and in person groups which have taken place. This is less than the target figure because several young people chose not to engage online and others have had high levels of anxiety with regards to being in a group based setting.
L’s mum has said, “PLUS has been a social life line for L. I remember the first time he started at the group he left saying, ‘My goodness that was amazing the other boys are just like me’. PLUS is one of the few places where L can just be himself. After Lockdown L has become socially distant and doesn’t want to engage with anyone and has great difficulty leaving the house. We are encouraging him to keep going with the group as it is the only group that he has and does enjoy.” A and M have developed a very close bond. They have similar personalities and laugh at the same things. They can be quite mischievous together, which can result in their peers reminding them to stop messing around. Group chat on zoom also has to be disabled as they allow this to distract them from the session. However, the positive here is the friendship and fun they are having. The boys attend different schools in different local authority areas and so without the project, they would likely not have met one another. The relationship between the boys is also being nurtured by their parents out of the project which increases the success here.
Provision of 60 support sessions per year (20 per group) provides each family of a child with Aspergers with approximately 40 hours respite a year.
A total of 129 sessions took place, split between 34 Dungeons and Dragons Sessions, 35 in person event and 60 online sessions. The online sessions were smaller in size to help make it more conversational between the group and they were shorter in length due to concentration span online being lower than in person. However they took place weekly, rather than fortnightly to support continuity over the difficult lockdown period and helped offer some structure. This was of greatest importance when contact with school was limited. Almost 900 hours of support was provided which was under the target of 1320 hours (40 hours for 33 children and young people , however with only 26 children and young people active, this averaged out at 35 hours per person.
One mum drops her child off at the event and then goes for a coffee and reads her book, often driving up to the Wallace Monument where she has a beautiful view and can have some quiet time for her. This is something she doesn't often get to do as she has another child as well. She uses this as her time to herself. Two other parents drop their child off and then go for a cycle, enjoying the child free time to spend time on their own health and wellbeing. Another couple of mums have met at drop off and gone for a walk and a coffee together, which is great in terms of being able to widen their social circles.
33 children and young people attending the project and families accessing peer support through the Parents Group.
Due to the complex nature of lockdown and the impact this had on the children, we engaged with each parent in June/July20 to find out how home life was and how we could provide support. We believed that we had to take a more holistic approach to supporting the young people and it was agreed that we would reintroduce our parent support group. This has run monthly and took place online during the pandemic. There is a lower of number of families participating in this and they are keen for it to return to being in person support when restrictions allow. The project coordinator has also set up a group "What's App" chat which the families use in between sessions, often for seeking advice. The project coordinator encourages the parents to develop their own peer support in situations like this, however will also respond directly if she feels there is additional input or support required.
“PLUS has been a lifeline and we hugely appreciated the Asperger group sessions being run online during lockdown. Kate has been a fantastic support for both the young people and the parents too. Thanks,” Parent “You are a fabulous service. Obviously I am aware of you in my work life too and I have seen first hand the impact your service had had on local families, children and adults. I am delighted that my child has been able to access this support. Also, accessing this support was really easy and Kate has always been really welcoming!” Parent
The ASP PC will work with the children, young people and their families supporting them with coping skills, developing communication techniques and tools.
One of the major issues for this group was isolation - and for some this was also an issue pre pandemic. Trying to support this was complex when the restrictions were in place however being able to reach out to some of them online did reduce some barriers. For those who were able to engage via zoom, they were able to get a lot out of the sessions and relationships with peers really did develop positively. However for others, they couldn't cope with the group set up online and so we were able to offer them 2:1 sessions so they could still work through projects and submit as part of a group. The ability to be flexible here and maintain regular contact with families has been essential here. Working alongside social work with one family meant that we were able to secure funding to support the individual on a 1:1 basis. His personal support requirements meant that he was unable to cope in a group setting online or in person, however we are working up to him returning to the group.
“My son benefits from spending time with peers in a supportive environment.” Parent ‘L has always struggled with imaginative and creative tasks. He is a very scientific and 'black and white' thinker. When I knew he was going to be doing creative activities with Daniel from the MacRobert Art Centre I wasn't sure how this would go... and L was extremely worried he would be rubbish and "there's no point in doing it". Normally when L loses confidence or worries about his capacity to carry out a task he withdraws and disengages. However, despite these worries, and often being pushed out of his comfort zone, L has thoroughly enjoyed all the activities done with Daniel and managed to attend the majority of the sessions, even when worried and anxious. He overcame his dislike of Zoom to attend the meetings online when the lockdown restarted and despite being extremely anxious some weeks, he managed to overcome this and came up with his own ideas and concepts for their work. Daniel has inspired L and through his belief in him he has managed to unlock an ability which L didn't believe he had. He worked with him with enthusiasm, patience and respect. L's confidence has improved and he has now surprised everyone by choosing to take drama as one of his third year options. Thank you!’ Parent And from the young people... J is so engaging over zoom and his really dry sense of humour has been coming across. He has attended almost every session and has coped well with the changes in the project. He was very quiet when he first started and although he would answer questions he wouldn’t proactively engage. We were keen to see if the confidence he showed online would continue in person and we have been delighted that this is the case. N has shown fantastic progression and is more engaging with his peers and staff. He confidently makes suggestions and showed interest in the editing and filming. Previously he struggled to hold conversations but now he will initiate them. He also likes to step up to help where he can. D is normally a very quietly spoken boy but he has shown an increase in confidence whilst meeting weekly over zoom. He now has a voice, is happy to participate, is more vocal when doing so and he engages well with his peers