ASP - Developing our Support for Young People with Aspergers
A story by Plus Forth Valley
Young people with Asperger Syndrome came together on a fortnightly basis to meet with their peers at our premises in Stirling.
The groups discuss and plan their sessions, promoting some independence and negotiation skills. Sessions range from Lego therapy, short film creation and drama workshops.
What ASP - Developing our Support for Young People with Aspergers did
We provide a safe environment where children are encouraged to take ownership of the group and have discussions to decide what activities they want to do each session. Some activities can last a few weeks and can include board games, technology, trips out, or more team work focused activities. The groups run fortnightly during term time, in addition to extra sessions for summer and two film launches. Developing a partnership with the Macrobert Art Centre was great for the groups as it allowed them to learn new skills, be taken out of their comfort zones, and feel a sense of pride in their task completion and film launches in a formal cinema/filmhouse environment.
Referrals come directly from families, or via social work. Families are able to relax whilst their child is at PLUS as they can see the enjoyment it brings their child being able to spend time with peers who have similar interests. Most of the people who attend are at different schools and as a result, would not have met without the group .
We did also successfully develop a parent support group during the year, which families really benefited from. We even found that a couple of dads became regular attendees - which is not something we have previously found in any of our parent support groups. All attendees also attended more than once which was reassuring that they valued the opportunity. In addition, we found that parents whose children didn't attend our groups, but would have fit the criteria to, asked if they could access the parent support. We were happy to open this wider as we could see there was a clear demand for this in the Forth Valley.
Unfortunately the older transition group never really took off. This was partly impacted by the older group being involved in the film and drama workshop for last 5 months of the project, and the older ones who would have been part of the new transition set up were keen to participate in the project. As a result, we facilitated some 1:1 sessions, but these didn't progress to a group set up.
Priority areas addressed were independence and transition to adulthood - although there ended up being much less focus on the latter.
What Plus Forth Valley has learned
There is a huge benefit in considering a two pronged approach to support, where we work with the young people and the parents and carers in tandem. At the moment our services for the parents have been more focused on providing them with a safe space to share - building this relationship is crucial, but it also opens doors to provide them with training opportunities or a chance to reflect on their approach and their knowledge.
More specifically, our project coordinator has said: 'Working on this project has just been amazing. I have learnt that although these young people are all diagnosed with Asperger’s they are not all the same. Every one of them has different needs and challenges to overcome. Giving them the opportunity to take ownership of the group has been interesting and the activities that they have been involved in have shown strengths that I wouldn’t have known about before.
We've learnt that they need continuity, building a core team of staff that are familiar to the young people has been important because they feel more confident to open up. Time management and being able to delegate to staff if any issues arise during any sessions. Small steps are just as important as big ones.
For some young people it has been a challenge getting out of the car, or walking into a room of strangers. For others its joining in and making conversations. We have done some amazing things over the year, drama workshop, escape rooms, Lego challenges, bowling and cooking. Being able to work in partnership to deliver sessions has added value to the project this year. The group react different to an external facilitator and the flexibility of the partner to lengthen the project to help build the relationships made it such a success.
We get great satisfaction working with all the young people, supporting them to find ways to breakdown barriers, watching them overcome some of their hurdles often independently, sharing in their successes and knowing that I have been a part of it.
How Plus Forth Valley has benefitted from the funding
The partnership with the Macrobert Centre over the year has been highly beneficial. We have been able to raise the profile of the group, and also reward the group for their hard work which took place over a number of months. The funding has allowed us to offer additional support to the parents, which would would not have otherwise been able to do - this did enrich the project.
30 children and young people across the Forth Valley will regularly attend the group and participate in activities they have helped to plan
We supported 28 young people to attend on regular basis., which was close to our target of 30. We find the engagement in these fortnightly sessions are high and the atmosphere is always really positive.
For weeks, one young boy would only talking to his 1:1 support. He now chats openly in group discussions, joins in activities and shows great creativity his through art and model making. His mother has said ‘This group has been the best experience for him and he has grown in confidence, he just loves coming.’ Another young boy used to always have his hood up during sessions, which made him feel safe. With regular attendance and continuity of staff support, he has built up a relationship and trust with the staff member. He now keeps his hood down and chats to other young people more independently. He joins in group activities and has made suggestions about future sessions. He has become very friendly with another boy in the group, due to them sharing the same interests which highlights his increased confidence in communicating. An older boy has isolation issues and can lack understanding of some situations. He initially appeared confident when he joined the group but it was clear he struggled to engage in some activities. He would chat when spoken to but didn't initiate conversations - now he talks to some of the boys, asks questions about the games they are playing and watches and listens to what is going. He does this while drawing at the same time. He has told his parents he is enjoying the group and the other boys talking to him. His mum emailed that he had come home and said “this was the best day of my life. I could cry, I had my first proper conversation”
30 young people will attend the group. They will be invited to attend other sessions, increasing their social opportunities and providing additional respite for families. We will support the children and their families with coping skills, developing communication techniques and tools.
Several of the group members now choose to come along to other PLUS activities, such as bowling and Dungeons and Dragons events. They know they will likely see each other there and it is clear that these additional opportunities to meet are strengthening the friendships. We have facilitated monthly parent support group which we opened out wider via social media and we have have a high interest in this. It became clear really quickly that even parents are feeling isolated.
Parents told us that they often feel like they don't belong in among other parents whose children's autism is more complex. They truly benefited from having a safe place to share their concerns, their worries and their bad weeks. Despite many of the families not knowing each other, their honesty and natural support to one another was clear. For us, having 2 dads attend regularly was also a bonus as we tend to find that parent support we offer reaches mothers, in the main. Everyone attended more than one session as well, which again highlighted the value they placed in the sessions.
Provision of 60 sessions per year, which will provide each family with approximately 40 hours of respite per year.
A total of 53 sessions took place over the year. There were an additional 8 sessions cancelled due to COVID, or limited availability of young people - this impacted the transition group. 5 x 1:1 sessions took place with the individuals who should have been meeting as part of the transition group and there were also 4 phone call catch ups to engage the young people in the lead up to the sessions. This was less than planned, however we were also able to facilitate 11 Dungeons and Dragons sessions, on the request of this group, with the length of the event and also the frequency increasing due to their requests. In addition to the figures above, 5 parent support groups took place, and were scheduled to last 1.5 hours. The meetings were closer to 2.5-3 hours in length each time, with families agreeing to stay later to provide additional support to one another as well as gaining information and advice from PLUS. A total of 846 hours of respite were provided to families.
Jane is 17 years old and only accesses the Asperger’s project. She is an extremely kind and helpful young person. Being the only girl in the group has been quite challenging for her, although she gets on well with the boys she doesn’t always want to participate in the activities. She tends to chat to staff more. Jane doesn’t like school and this has been an issue over the last couple of years. She wasn’t engaged and would take a lot of time off. This only added to the pressure and worry her parents felt. Jane wanted to leave school to go to college to do a beauty course. The interview process was particularly hard for Jane as some of the questions were hard for her to process. With the support from PLUS, by helping reword the questions, she eventually got on the course. Unfortunately, she has since left but gained a lot from the experience. Through the group it was suggested that Jane did some volunteering work with the younger Aspergers Group. Jane was really enthusiastic about this and after discussions with her parents she started volunteering. She has been great in this role and works well with the staff and young people. She is always willing to do things and gives input during debriefs. Being in this role has given her a lot more confidence talking and engaging with everyone. She is now moving out of her comfort zone and volunteering in other groups with young people with varying disabilities. She has reengaged with school and is building better relationships with her teachers. Since September 2019 Jane has started work experience in the PLUS office gaining administration skills to add to her achievements. PLUS has continued to engage with Jane's family and the school to support to gain some valuable life skills. The support she receives from the Project Coordinator has become quite bespoke - however it felt like this was the right thing to do for her. Her parents are happy that she is learning new skills in an environment where she feels safe. Jane's sense of belonging continues to grow and she will have a lot more to offer in the future. School have also been delighted that such appropriate roles have been able to evolve and develop, creating some valuable work experience for her.
30 children will attend the project and families will access additional sessions via Family PLUS. The young people will attend additional PLUS activities. We will explore opportunities for 1:1 support for volunteering.
Funding for our Family Coordinator wasn't secured and as a result, the project coordinator took lead with developing opportunities for the parents and carers directly. For the first 4 months of the project, organisational wide support sessions took place. By creating the specific group for parents whose children have Asperger Syndrome, we were able to have a greater impact on the families. Formal volunteering has been developed for 2 of the young people, one mentioned in the previous case study, and the other below. Again, this was a situation which almost grew quite organically and it is great to see how much stronger it continues to grow. 11 Dungeons and Dragons sessions took place, which tends to be attended primarily by the young people from this group. 22 Bowling sessions took place, which are also sessions where there is a high number in attendance from this group. The group discuss what sessions they are planning on booking in for.
Tom is diagnosed with Asperger’s and he started attending PLUS via the Aspergers Group when he was 8 years old. He is a bright young boy but found making friends and socialising difficult. His interests are history, museums, technology and biology. Tom is now 14 years old and has grown in character as well as confidence over the last year. He is looked up to by the other boys and he enjoys taking the lead in some of the activities, Dungeons and Dragons being one of his favourites. His communication skills and confidence is amazing and we felt that we could encourage this. During conversations with Tom we found that he was keen to run a group specifically for Dungeons and Dragons. Over the summer Tom became a volunteer and with the support of our Volunteer Manager and the group was set up with Tom leading it. It has been a great success with some of the boys from the Aspergers group attending along with other children who access PLUS. Through his volunteering, Tom is now participating in the Duke of Edinburgh award through school and is also registered with the Saltire Awards. Tom is therefore able to see a tangible piece of evidence to recognise his achievements. As sessions were cancelled relating to the current pandemic, we had consent to share the contact details of the families and young people involved in the project as it looked likely our staff would have to go on furlough, and so the support we would be able to offer would be limited. The young person has been able to use the lockdown period to set up an online Dungeons and Dragons game, which they play weekly, where there are regularly 5-6 young people from PLUS playing together. This is a huge success as he has been able to take his leadership skills to bring the group together at a time where PLUS has been limited in our capacity. This independence shown, as well as the friendships between the group are no longer requiring PLUS facilitation - definitely a success!!