Support for Siblings of Autistic Young People
A story by Perth Autism Support SCIO
We provided weekly social groups for the siblings/young carers of autistic children and young people to allow them to develop peer friendships with others in a similar situation.
Supported by autism specialist staff, there are the opportunities to take part in fun, relaxed activities designed by the young people.
What Support for Siblings of Autistic Young People did
We delivered two groups for siblings on a rotational weekly basis split in to primary age and secondary age young people, one group per week for two hours, allowing them to be with their own peer groups and the focus of activities around autism awareness and understanding to be tailored to the age and stage of the young people.
The groups followed the same structure – group time and catch up, activity related to autism understanding (i.e. what challenges do we have and thinking about solutions), all delivered in a range of ways depending on the interests of the group. We looked at exploring the positives of having an autistic sibling and also the challenges of explaining autism to their friend group out with Perth Autism Support.
There was then be the opportunity for some free choice activities allowing them to relax, have fun and build friendships. Through this time the staff were available to chat one to one with any sibling who may have a particular concern or issue that they wished to discuss privately.
Our project addressed the following principles of the fund: Mutual Benefit, Personalisation, Targeted Support, Adding Value and Knowledge and Understanding.
Whilst our project ran to plan and had a great feedback and success we have learned better in how to support each age group with both groups having different reasons for attending siblings support. For example, the secondary age group was much more focused on having a fluid, less structured approach and were keen to participate in activities out in the community as opposed to in our centre.
They had a strong desire for learning and sharing experiences, whereas our primary group were really keen to have fun, take part in similar activities they knew their sibling attends at Perth Autism Support, with a focus on developing friendships and less on learning.
What Perth Autism Support SCIO has learned
Full consultation is key with young people, by consulting at the start of the project, this meant that we had a clearer idea of the needs of the young people which meant that the main delivery of the service was not required to change substantially through the project. It also allowed us to understand the different needs for the two age groups we provided groups for.
In terms of project planning and budgeting, the needs of some of the young people within the groups, although not necessarily diagnosed with autism, meant that we had to allow for extra unexpected staff support, this means that we need to change do more work in getting to know individual young carers prior to them joining groups, so we can accommodate and support all support requirements more easily.
In terms of reaching new families, we have improved our communication to reach new young carers as we found it was those who knew our service really well who joined the groups and we should better communicate our offer for young carers to other organisations who may be supporting them in other areas, education colleagues and to families who may be new to our wider organisation.
How Perth Autism Support SCIO has benefitted from the funding
Our organisation benefitted from Creative Breaks funding as it allowed us to deliver much needed services for young carers. We know from our consultation how much the service is needed and valued and without the funding we would not have been able to have the resource to ensure young carers of autistic siblings have the autism specialist support they are keen to access. The funding ensures there is a choice and flexibility for young carers to find a service that is right for their needs and is essential to the wellbeing of a range of young people and families.
40 young carer siblings will have access to regular social and learning opportunities.
49 young carers accessed support for the length of the project, some attending every session for their age group, some attending every second group.
40 young carer siblings will have increased resilience to be able to deal with their caring role and a range of practical strategies to be able to support them in their caring role.
49 young carers had access to a suite of resources, appropriate to their age and stage and access to autism specialist staff to support information and learning. This was more successful for the 22 secondary aged young people who reported they had used ideas and resources successfully. Both age groups reported that they enjoyed the break from their caring role and indicated they preferred leaving the house and coming to our centre when restrictions were lifted rather than connecting online.
C accessed our Siblings group prior to Covid. During lockdown, this was suspended and C’s family took part in our Siblings consultation and surveys to let us know ways in which PAS could support C and other Siblings during Covid. C’s family took part in a videocall Children’s Services Team Leader and they expressed that the Siblings group had been crucial for C to understand her autistic brother. C had learned how to deal better with her brother’s challenges by using strategies that she had learned in Siblings group. C’s family also said that the group helped C feel included in her brother’s life – her brother accesses PAS activities regularly, and C had been feeling left out of this until she started accessing Siblings group. Based on this feedback, we created an online Primary Siblings group that would allow C to still have contact with PAS staff and her PAS peers.
40 young carer siblings will have a supportive, understanding network of peers and have a positive approach to living with their autistic sibling
49 young carers had access to, and reported that they felt a sense of belonging with others in a similar situation. There have been peer friendships that have been developed and are maintained out with Perth Autism Support activities. In terms of a positive approach to living with their autistic sibling, this has been easier to evaluate with the secondary aged group who have reported they are more comfortable at home, that they are more likely to talk positively to their friends from out with the social groups about their sibling and parent/carers of both groups reported an increased understanding and acceptance within households.
As part of our Siblings group consultation, we identified siblings of young people currently accessing PAS. One of our targeted siblings was R, sibling to two autistic individuals who regularly access our services. We sent out to families two surveys, one for families and one for siblings themselves, asking what they would like a Siblings specific group to look like. R and their family filled out both surveys – which were anonymised. R and her mum also took part in an videocall with the Team Leader of Children’s Services to gather more individualised feedback. R expressed feeling like she did not have space to express her emotions in her household, as her two autistic siblings usually required a lot of support from her parents. R struggles with friendships at school, and she would like a group of peers with whom to discuss her worries who would listen to her and not judge. R also expressed that she would like the group to have YP her own age, as the Siblings face to face group she had previously attended had younger children. As a result of the consultation, Children’s Services offered an online Secondary school aged Siblings Social group where R met another YP fortnightly with the support of two staff members. Staff would ask R for feedback after every session, and she passed on that she felt comfortable and really enjoyed the group.