Sibling Support for Young Carer Siblings of Autistic Children and Young People
A story by Perth Autism Support SCIO
Our project supported the siblings of autistic children and young people within Perth and Kinross by offering group and 1-1 activities where they spent time with others who understand what it’s like to be the sibling of an autistic person, whilst building strong friendships.
What Sibling Support for Young Carer Siblings of Autistic Children and Young People did
The young people who attend our siblings’ sessions have built strong friendships with one another and have become aware of why they attend our sessions. We make it fun as we want them to know that when they are here, they are allowed to relax, left off steam from being at school, or put behind them any difficulties they might be feeling at home. Even though the group is treated as a respite group, we still structure our sessions so that they are having fun but are continuing to learn about themselves and their autistic sibling.
Recently the siblings group worked through a booklet called, ‘Autism, my sibling and me.’ Whilst working through the booklet, the young people readily engaged with staff and each other by either asking questions or discussing what they wrote down in the activities. Staff found that working through this booklet with the young people opened comfortable conversations where they could talk to staff regularly about their sibling whether it involves, differences between themselves and their sibling, things they find difficult at home with their sibling, or things their sibling might do that they do not understand.
What Perth Autism Support SCIO has learned
We have learned the following three key points from our project this year:
The importance of having autism specialist support for siblings has meant that we have been able to bring together young people who would never have had the opportunity to meet due to attending schools. This in turn has decreased social isolation for young people and lowered anxiety and stress as they know they are not alone in their experiences.
With our knowledge that there is often a theme of neurodiversity in our families, it is not unexpected that we have siblings attending with their own support requirements. It has therefore been really helpful that our team are used to being flexible in their approach to respond to the person centred, individual needs of children and young people who access our support.
We are experienced in evaluating activities with autistic children and young people to allow differences in communication styles whilst still hearing the young person's voice and this has been the same for our siblings. The range of evaluation approaches we have in our toolkit needs to also be applied to young carers to hear their views, thoughts and opinions.
How Perth Autism Support SCIO has benefitted from the funding
The funding has allowed us to provide a safe space for young carer siblings where they are supported not only to have a break from their sibling carer role but in an environment in which we can talk through situations with them from an autism perspective, allowing them to develop skills, understanding and learning whilst in a fun and supportive environment.
40 young carer siblings will have access to regular autism-specific learning opportunities as well as social opportunities away from their young carer roles.
34 young sibling carers attend our groups regularly. 5 of these young people are working 1:1 with staff.
We have worked closely with a family where their 8 year old is autistic and the 10 year old attends the group but struggled at home and at school to maintain relationships with their peers. They also expressed anxiety around moving up to secondary school and leaving their autistic sibling behind in the coming year. Through working with our staff and communication with the parents, our staff worked 1:1 with the sibling who opened up about their feelings around anxiety and change. They have begun to make friends in the group and shared stories with others about their experiences and feelings of guilt and anxiety. Together the group have discussed this common feeling and have opened up about their worries around leaving primary school. Perth Autism Support is working with them and their family to support the transition to secondary school and how best to manage the change for the whole family.
40 young carer siblings will have an increased understanding of autism which will provide them with a range of practical strategies and increase their resilience to be able to deal with their caring role.
34 young carer siblings are assumed to have increased resilience, and the 15 young carer siblings who attended our secondary school group reported an increase in their resilience. Evidence of increased resilience for our primary aged group was gathered through feedback from families. Families of 16 of the 19 primary aged children who attended, reported that their children had better understanding and empathy with their siblings and that relationships had improved at home.
A parent of one of our young people who attends the siblings’ sessions reached out to staff this term and asked if we could do some activities on emotional regulation as their young person has started to struggle with relationships at school due to how she may seem to other people when she is dysregulated, and this is having a detrimental effect on her relationships with her classmates and other people at school. We will continue to work on emotional regulation throughout this term and continue to support her with her own emotional regulation both in and out of Perth Autism Support.
40 young carer siblings will have a supportive, understanding network of peers and have a positive approach to living with their autistic sibling as well as having an improved relationship.
34 young sibling carers have worked through information and activities that will help them understand their autistic siblings better. In the primary aged group, 12 of the 19 young people when asked told us they had made at least one change at home that helped support their autistic sibling.
One of our young people had shared with staff that her sister often sits in her room and that they don’t communicate often and questioned why she does this. Staff had explained to her that her sister may find her room as her comfort space, so if her sister were to have a hard day at school, is feeling overwhelmed, or just needs some time to relax, she might just want to spend time in her room on her own. Another one of our young people said that he and his sister often “scream” at each other at home. He said to staff that he doesn’t understand why “she gets to scream, and I can’t”. He said that this often starts because his sister becomes frustrated and becomes louder until she is screaming; he said that he often matches her volume as he becomes frustrated himself. He had said that often, if he screams back, she will become frightened and go to her room. Staff had explained to this young person that his sister is most likely overwhelmed by something that has happened at home or outside of their home, and when she becomes overwhelmed she may not realise that she is raising her voice, and if he were to match her volume, she may get a fright as she isn’t aware of her own volume so hearing his volume may take her by surprise and she may be confused as to why he is frustrated and raising his voice. Since then he has thought more about his behaviour and changed how he responds to his sisters' reaction. He now tries to be more understanding of why she is doing what she does.