Social Activities for Young Carer Siblings of Autistic Children and Young People
A story by Perth Autism Support SCIO
Our project was supporting young carer siblings of autistic children and young people in Perth & Kinross, through social opportunities to build confidence, peer networks and provide fun activities out with the family home.
What Social Activities for Young Carer Siblings of Autistic Children and Young People did
We delivered support for siblings of autistic children and young people within Perth & Kinross. Living with and supporting an autistic young person can be challenging for siblings. Autism as a condition, as it is neurological, can often be a confusing and difficult condition to understand, particularly for other children, and can have a lasting impact on sibling’s relationships and their day-to-day childhood. For example, we would expect young people to be able to develop friendships through having friends' round for tea, or family relationships to be strengthened going on holiday together or having fun, spontaneous days out.
Both of these simple events are difficult for a lot of our families due to the autistic young person’s need for routine and struggles with transition or doing things that are new. All of these things take planning and careful consideration and for some families is just not achievable.
Our project supported siblings from age 5 and up and offered a social opportunity each week to have fun, to develop peer friendships with other young people who may be experiencing similar experiences in their home life and to be supported by a staff team knowledgeable in autism to help the young carers to understand better the sibling's autism and what they can do to support their brother or sister.
We delivered two groups for siblings on a rotational weekly basis split into primary age and secondary age young people, one group per week for two hours for 20 siblings. This allowed them to be with their own peer groups and allows 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, social activity and the activities were developed around the interests of the group with a fun, relaxed approach. Some of the siblings who attended the groups had their own additional needs and therefore needed higher levels of staffing support, this meant that some spaces were not filled to allow for the right support for the children/young people attending.
What Perth Autism Support SCIO has learned
We have learned the following three key points from our project this year:
1. 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.
2. 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.
3. 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 appropriate social and learning opportunities at a time that is right for them
We supported 36 young carer siblings throughout the project. Due to additional needs of 5 of the young people, we tailored their support in the sessions (3 in primary aged group and 2 in secondary aged group), this allowed them to still benefit from the support and be included in our siblings offer with a higher level of support than the other children and young people.
One of our young carer siblings, lives at home with her parents and two siblings, all 4 of whom have a diagnosis of autism or self-identify as neurodiverse. For R this means that she is used to living in a household that not only impacts her social opportunities in terms of having friends home due to her siblings' preferences for routine and structure at home, but she is reliant on her parents to transport her to social opportunities out with the home, something that they can find challenging to do due to their own neurodiversity. R lives in a rural part of Perth & Kinross and over her primary years, just withdrew from attempting to make friends with her peers as her situation meant that she wasn't consistent in forming these friendships and in her words "she gave up because it was too hard work". The family know our services well and therefore R's parents were encouraging of supporting her joining our siblings' activities and as they were every fortnight for her age group didn't demand too much from the family to support her to attend. R has formed close friendships with 2 young people in her group in particular, and they have been chatting online in between groups and she has had her first sleepover at one of her friends' houses, stating in her words "it doesn't bother me when A's brother gets upset as this is something usual in my house". R told us, "I sometimes felt like the odd one out in my house, but now I have two best friends who know what it feels like - it's just annoying they don't go to my school".
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
36 young carer siblings are assumed to have increased resilience, and the 19 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 13 of the 17 primary aged children who attended, reported that their children had a better understanding and empathy with their siblings and those relationships had improved at home.
M is 10 years old and has a sister who is 8 and autistic. Before accessing our support, M found it increasingly difficult to understand why his parents may use different approaches for his sister than they did with him. This was changing the relationship M had with his sister and there was increased tension and arguing in the household. Since accessing our support, on the weeks when M would attend angry and frustrated, he had a listening ear from a staff member who could then chat through why things may be happening at home and why it might seem different in terms of parenting techniques. This information, as it was delivered by someone not emotionally involved with the relationships and in an age-appropriate way, meant that M was more likely to listen and more able to take on board information, with a safe space to say how he really felt without worrying about hurting anyone's feelings or damaging relationships. Since accessing support, M's mum told us "He will often tell us now why his sister is specifically doing something and he is much more patient and kinder, even when he doesn't understand why we might do things differently with her, he trusts us enough now to accept it better more often".
40 young carers will be able to take part in a range of activities to increase awareness of their caring role as the young carer for an autistic sibling
36 young carers were able to take part in regular, fun, social activities with their peers. The activities were decided by the group and through doing this, peer friendships were more quickly formed and cemented as they all got to know who had similar interests as each of them much quicker.