Support for Engagement in Social Activities Programme for Autistic Young People
A story by Perth Autism Support SCIO
Our project supported our hardest to reach, most anxious autistic young people to access wider Perth Autism Support group activities and increase social opportunities. This was achieved through building on 1:1 support, smaller group engagement and a slow introduction to larger group activities supported by staff.
What Support for Engagement in Social Activities Programme for Autistic Young People did
We received funding from Better Breaks in March 2021. Since we received this funding, we have delivered a whole range of activities that our hardest to reach autistic young people have been supported in accessing. Due to COVID-19 restrictions easing, we were able to hold most of our activities in person, however, we have also discovered that online activities have been of benefit to some of our young people who struggle with social anxiety therefore some online groups have continued. From March 2021- March 2022, we have delivered over 47 different types of activities, including cookery, art, and drama, with a total of 242 autistic young people accessing. Of this number, we have managed to support 73 of our most hard to reach autistic young people through our 1:1 support programme to engage with this range of social activities and opportunities.
These activities were delivered at our Centre within Perth City, and across rural Perth and Kinross. Our project also allowed our parents/carers to access respite time. By encouraging young people to attend our activities, this frees up time every week for parents/carers to have time away from their carer roles, whilst also ensuring our autistic young people have access to vital social opportunities.
A huge success from our project was that we were able to get a substantial number of our hardest to reach young people to engage in social opportunities and experiences. For many autistic young people, accessing social opportunities can be incredibly difficult, they are more likely to be subject to social isolation, bullying and loneliness due to a lack of understanding around their communication and social differences. The access to 1:1 support to engage with universal Perth Autism Support social activities have meant that our young people can socialise and communicate with other autistic young people who are well supported by our autism trained staff team.
What Perth Autism Support SCIO has learned
We have learned that there is a real need for support for our hardest to reach, most anxious young people. There are no other autism specific support services within the Perth and Kinross local authority area, and as a result of communication and social barriers that a large number of our autistic young people experience, attending mainstream activities is difficult, if not impossible for them, as mainstream activities are not equipped to support their needs.
Furthermore, in the earlier stages of this project when activities were returning to in person post COVID-19 lockdowns, we found that there was an adjustment period. Our young people rely on consistency and predictability when it comes to their routines as it can help emotionally regulate and feel less anxious. This made the return to activities quite difficult for our young people as they were often dysregulated, unable to focus, had high anxiety due to the change in structure and this has meant a lot more of our young people have required 1:1 support or a more tailored approach to be able to cope with or manage attending wider PAS activities. This has meant that we have had to look into developing more services that respond to the growing number of anxious people that we support.
We have therefore, alongside this project, developed our “Small Steps” group which is a smaller social group of up to 5 young people which is targeted towards those with anxiety, as well as increasing our delivery of our “Be Content” Programme. Our Be Content Programme provides information and learning for how to manage anxiety and developing coping strategies.
In addition, we have learned that more and more young people are in need of support, particularly as we re-adjust to the easing of restrictions coming out of the pandemic, and with this increase in service delivery to mitigate this increased, this has also meant we have had to maximise our funding streams. Securing funding is a challenge across the third sector and in response to the increase in funding needed, we have developed an in depth Income Generation Strategy that provides a clear plan on how we will secure funds from our main funding sources which includes our Trusts and Foundations, our Community Fundraising, Self Generated Income and Commissioned Services.
How Perth Autism Support SCIO has benefitted from the funding
The Better Breaks Funding has been incredibly important in being able to reach our most anxious and hardest to reach young people. It has provided with us the resources necessary to provide quality support and as a result, more and more of our young people who previously found it challenging to attend wider group activities are able and excited to do so.
80 autistic young people will be able to access services to have social opportunities, build peer support and engage in motivating activities
We have successfully supported 73 of our young people into accessing wider services and the social opportunities. This was achieved through the six week block of 1:1 support provided to our young people via our autism staff trained team. The 1:1 support has facilitated a safe space for our most anxious young people where they can build relationships with our staff, get to know their environment and be reassured that they will be well supported with their individual needs and challenges. Furthermore, this approach has been tailored for each and every child, as they will all have completely different needs. Having a bespoke support plan in place has made it far easier to support our hardest to reach young people with the range of needs that they have. This has in turn made it far easier to identify the specific barriers to accessing wider group activities each young person has and through the 1:1 support, having a targeted approach to overcome these barriers.
Background A got referred to PAS in November 2017 by Child Development Clinic, at age 6. He struggled with socializing and selective mutism, this was made worse by the fact he was bullied within school and many of his peers did not understand his autism and support needs. What did we do? Prior to A accessing groups, staff met with mum to explain the structure of the sessions and answer any questions or worries that she may have. Upon accessing his first session, A was allocated to a staff member on a 1:1 basis so that he could be fully supported in his transition. A appeared anxious at interacting with other YP in the group and he presented selective mutism – i.e. he did not speak to others during sessions. Staff lowered the social demand placed on A, and focused on making him comfortable in the group. Staff adapted to A’s communication, who spoke rarely and by using his teddy bear, and encouraged A to take part in different games 1:1 with a staff member. Staff slowly introduced parallel play with one other YP at a time, particularly with young people who shared A’s interests to make this a more comfortable interaction for him. Each session had a clear structure week after week, so that A knew what to expect from each group, and changes to this routine were slowly introduced as A became more comfortable. Eventually, A started taking part in activities with the whole group and speaking to both staff and other young people without his teddy and, subsequently, without much prompting or support from staff. What outcomes did we achieve? - A grew in confidence in his communication skills – he displayed selective mutism and would not speak during sessions; now, he speaks and interacts with staff and peers in his groups unprompted. - The sessions clearly have a positive impact in A’s mental health and well-being. A is visibly happy before each session, looks forward to coming into the group and thoroughly prepares beforehand different toys and news that he wants to share with the group. - A comfortably interacts with others in the group and is steadily developing communication and social skills – he does not manage this at school or in any other environment other than at home. - A feels safe and understood in PAS groups and has developed positive relationships with his peers. He developed these further during lockdown, as he managed to arrange online calls with other Young people outside of his scheduled PAS videocalls. - A and his family feel more included in their community, as before PAS involvement, they did not have access to any services in their area who could support A fully. His mother shared with us that "For us PAS outreach gives us a local place for A to go and truly be himself and be understood. Unlike school were he finds navigating friendships very difficult especially having selective mutism in particular with other kids. He is trying to survive on gestures and head nods/shakes to get through. We can see a difference in social group. He is more relaxed and confident and I am told he speaks there. He is able to take his big bag of things that are special to him and share them with others. This is the only place apart from home where he can do this. He glows with happiness as he fills up his bag before going to social group. He can’t share who he is anywhere else. He doesn’t have friends and school is not an option."
Carers of disabled children and young people (aged 20 and under) will have more opportunities to enjoy a life outside of their caring role
Through 1:1 support and successfully supporting 73 of our young people into regularly accessing wider group activities, 182 carers could identify an opportunity where they have time to enjoy life outside of their carer duties each week. This provided regular respite time where our families take time for themselves whilst being assured that their young person is being well supported by an autism trained staff team. A very important element of this outcome was ensuring that the young people were encouraged and supported to attend regularly our wider group activities so that parents/carers had regular access to respite time. Therefore, it was important that the group activities were developed to meet the needs, interests and wants of our young people and created a fun, safe space where they feel comfortable and well supported whilst enjoying social opportunities. This has ensured regular attendance and regular time for parents/carers to have to themselves away from their carer duties.
B is a registered autistic young person, with several additional support needs, including with emotional regulation, particularly with his “fight response” when he becomes over stimulated. This has made him particularly hard to reach, as group activities can often be overwhelming and because of his fight response this has made it difficult for him to attend. Furthermore, B comes from a neuro-diverse family as both of his parents are autistic. As a result, home life has been incredibly difficult as B’s parents have had to try and manage his additional support needs and whilst also trying to manage their own. This has often resulted in his parents becoming emotionally de-regulated, exhausted and suffering poor mental health. B’s mother in particular has suffered from poor mental health over the last 15 years and as a result of not coping, the family were referred to social work for self-directed support however did not meet the criteria. This meant they continued to struggle with the family dynamic with limited to no help and support. What did we do? This family have accessed several of our services including our Family and Education Support, and Children’s Services, however, as one of our hardest to reach young people he has also been supported 1:1 with managing and integrating into Group activities. One of the biggest challenges for B attending activities has been that he does not live within Perth City and his father works full time and mother does not drive. He has found travelling anxiety inducing and difficult and as a result of all of these factors he has struggled to attend PAS services. Through our 1:1 support sessions, we have supported B with Independent Travel so that he has the skills and confidence to be able to get a bus to join our activities. B’s parents, as a result of their own autism, have struggled with socialising, through our 1:1 support and individual child support plan, we identified that B being able to partake in social opportunities and developing social skills was vitally important to his parents. We have also encouraged B’s parents to partake in their own social opportunities whilst B attends group activities, including referring both parents to community services, such as adult autism services and Andy’s Mans Club which is a male mental health group within the local community. Outcomes: As a result of the 1:1 support we have provided, B has been able to access our wider group activities and enjoy social experiences largely without becoming emotionally de-regulated and having a fight response. This is because we have identified his main barriers and he is well supported by our autism trained staff team in overcoming those barriers, or being provided with the support he needs if he is experiencing difficulty emotionally regulating. B has also been able to regularly get the bus into our wider activities and has overcome his anxiety about traveling by himself through 1:1 support. Not only this but because B has been attending our wider activities multiple times a week, this has allowed his parents to access vital time away from their carer duties. This is extremely important for B’s parents as they are both autistic and need the time to be able to regulate their own emotions. They require their respite time to be able to manage and sustain the family dynamic within the household. As a result of B accessing wider activities, the family home has stabilised and B’s parents are now able to manage and cope which has improved both of their mental health. It has also allowed B’s parents to access their own social experiences and community support through Adult Autism Services and Andy’s Man’s Club.
Carers of disabled children and young people (aged 20 and under) will feel better supported to sustain their caring role
With 73 of our hardest to reach young people being supported into accessing wider group activities, 182 of our parents/carers have been able to take vital respite time, but they have also been able to access a strong peer network of support, information, advice and training from other PAS services, which has supported them further with their carer role. With their young people accessing wider PAS services, our parents/carers have also been able to access a network of peer support from others who can relate to the challenges that they face in their carer roles, whilst also being able to develop peer friendships for the young people we support outside of our services.
When A first began accessing support with our services, he would only communicate by using his favourite teddy to use gestures or speaking in a “teddy” voice. He struggled with selective mutism, and found it difficult to communicate in environments he wasn’t familiar with or he didn’t feel safe in. School has been very challenging for A as he has experienced bullying and a lot of his peers do not understand his autism which makes it incredibly difficult for A to socialise or communicate. This has meant that he did not attend any social groups and this has meant that his parents did not have time for themselves outwith their carer duties or time to access peer support and information, advice and training to help support them. Outcomes: Now that A is regularly accessing activities, his carers have had the time to access support and training from other PAS services in order to help support them further with their carer duties. His mother has stated: “I personally have attended all the Crieff autism training courses that were available and felt they were really good. I learned a lot and was great to share with others and learn from them.” Due to regularly accessing PAS activities, A’s mother has also been able to access peer support from other parents who’s young people have attended the wider group activities which has provided some relief and reassurance to her as she can share with these parents similar experiences and challenges and know that she will be understood.
80 autistic young people will have regular access to social opportunities and their carers will have regular access to time away from their caring role.
73 of our young people have been able to, through tailored and 1:1 support, access a whole range of different fun, engaging activities. We have ensured that we are offering flexible, engaging packages of support which are regularly reviewed to monitor and evaluate progress for our young people. It is important that we have maintained close communication with families and young people, as this has allowed us to identify areas of support for our young people and tailor our approach to ensure each young person is getting the direct support they need.
Background We received an initial referral for this young person via our Families and Education service. The family were looking for support for the young person who had high anxiety and was not attending school regularly. The young person has also has an eating disorder. On the referral it was noted that an application had been put in for a specialist school as the young person was struggling too much in a mainstream class. The parents were worried about her high levels of anxiety and the impact it will have on her schooling as well as her day to day life. It was also massively affecting their relationship as a family and was causing a lot of tension within the household. The family were worried about their family life suffering as a result of the high level of need from the young person and them not knowing how best to support her. It was decided 1:1 support would be more appropriate for the young person. It was identified that one to one work around emotional regulation, anxiety management and increasing confidence was needed. The young person was struggling to maintain a positive relationship with anyone, and group activities were not achievable at that time. It was determined that if no support was given then this young person's mental health would deteriorate and she would become more and more socially isolated and wouldn’t have any positive relationships. What did we do? After receiving the referral, we focused on information gathering from other services including school, to find out her needs and challenges. We also signposted the parents to our parent training programme and recommended certain courses which would work well alongside the work that we would be doing with the young person. Through our 1:1 support, she was able to build a relationship with staff and begin to feel more comfortable. By identifying which concerns and difficulties she was having, we were able to make an individual support plan and work with her to overcome her barriers. This has included doing some work within the community to build her confidence and social skills such as, helping her with ordering a coffee in a café. As a result of this, we were eventually able to introduce her to a range of group activities. What outcomes did we achieve We have noticed a real difference in the young person’s overall engagement and their mental health. We have seen this by the levels of engagement from the young person. They have been able to access other services and not just the 1:1 support sessions, but also regularly attending social group activities. One quote from the young person was: ‘I felt like I was starting to think my bad thoughts and feel a bit anxious but I managed to stop this by going to get my ipad and start to draw’. It has also made a difference to the family as a whole as the high levels of tension at home have lowered. They are now able to enjoy family time better. The young person also talks about doing different things with her younger sibling which she was not able to do before and their relationship was constantly troubled. The quote from their parents said ‘ Thank you so much for arranging for ****** to attend the group sessions. She is getting on so well and is now managing to attend them independently and is building a great relationship with the staff. Thank you!’