Short Break Stories

Siblings Project

A story by Perth Autism Support

We offered weekly support for children who have siblings with Autism in Perth & Kinross, we did this with weekly social groups, individual sessions and holiday programmes.

The siblings had their own space where they were able to share their experiences with other children who are in the same situation, gain a better understanding about what Autism is, have fun and be supported by a team of staff and volunteers.

What Siblings Project did

Over the past year, we have had a very positive response from volunteers who enjoyed taking part in the siblings group, through training sessions and chats about the siblings project, we recruited different staff members and volunteers who have been exceptional in giving support to the children. There is a Siblings Programme each term and a Siblings Holiday Programme where we run activities for them as well as the siblings on the autism spectrum.

Programmes were sent to all parents who are registered with us, who in turn book their children in for the different activities suggested in the programmes. The siblings service has a specific promotional leaflet which is distributed around schools within Perth and Kinross. The siblings service was spoken about during family support and school support meetings so not only current families are aware of the service, but also new families who had just registered with us, are thinking about getting registered or are going through the registration process.

In the last year, we offered a total of 106.5 hours of direct service to carers between weekly social groups, individual sessions and holiday programmes. Whilst the weekly social groups and individual sessions took in our centre, during the holiday programmes the carers enjoyed the opportunity to go on day trips to places like The Science Centre in Dundee or Landmark in Aviemore.

During their breaks our carers' cared-for children enjoyed other activities within Perth Autism Support and its Autism Spectrum Disorder dedicated programmes. The carers had their dedicated time to enjoy doing different activities during term time such as going to a café which they like and rarely have the opportunity to go to as a result of their cared-for relatives, as well as doing some art painting canvasses, going out for trips to different parks in Perth, doing science experiments, taking part in sensory play activities, baking and cooking. During the holidays, the children had a great time going out on day trips to places which they suggested.

This young carer started coming to siblings group with very low self-confidence levels and constant need for reassurance to get involved in activities. The carer suffers from some physical disabilities which cause delays in the way information is processed in the brain, factor which has been for a long time a noticeable obstacle in the carer's involvement with the group or ability to put own ideas forward.

The carer never missed any social groups in the last year, and with the consistency in the staff and volunteers who have supported the siblings group, the improvement in self-confidence has been more than noticeable - the young carer now takes part in activities without displaying anxious behaviours as support has consistently been there and no fear of failure has developed.

The young carer has also improved in terms of putting ideas forward, and other children have responded in a very positive way, engaging with the ideas put forward which has improved the dynamics in the group as now the group has full involvement from all children.

When this young carer joined the siblings group a year ago, the relationship with the child who has Autism in the household was rapidly deteriorating. After spending a year with the siblings group, learning about Autism, sharing experiences with other children who are in the same position and having fun with other children and adults, the relationship between both children has improved to unexpected measures.

We often receive feedback from the parents when the young carer gets dropped off or picked up at siblings group explaining situations which the parents thought would never become a reality in their house - a very touching moment was when the cared-for child was planning his birthday party and once the date was set up, the parents said that the sibling was away that day and would not be attending the party, to which the cared-for child replied "then I will change the day, because I will not have fun unless we are both together".

When the parent was telling the staff this story, she very emotionally said that the improvement in their relationship was a dream come true and that she was very thankful for the services they have benefited from at Perth Autism Support.
These young carers who are siblings themselves joined the group when the service started and have been attending different holiday programmes and the weekly social groups ever since. The situation in their home has been challenging in terms of the difficulties they have encountered with both having a sibling with Autism, through the siblings service both have been increasingly more positive and helpful with their cared-for sibling who as a result has been better understood and supported by both carers.

Unfortunately, the last year has been specially challenging for this family as a member of their household was diagnosed with a very aggressive illness, which has had a big impact on both children's lives. The siblings service has helped both children to continue to have time away from the household and provide them with a safe environment where they have been supported through all their challenges, they have had the opportunity to share their worries and anxieties with members of staff that they trust and use Perth Autism Support as a place where they felt happy and distracted from the unfortunate events that they have had to go through over the past months.

What Perth Autism Support has learned

During our time delivering the siblings service, we have learned many things. One of the most important things that we have learned is that this fund has allowed many children to benefit from many activities which are not always accessible to them and most importantly, it has improved many carers and cared-for children's lives.

On the other hand, making this service personalised by tailoring each activity around the children's interests has been a great way to fully meet the need of the children to fulfil those activities which was in their interest to be a part of.

Lastly, and as said above, spreading the word across schools and in family meetings has been a great way to attract new carers, we have had the opportunity to experience this first hand as we also work alongside schools within the Family Support Service of our charity, and detecting families who could benefit from the siblings service has been a key part of the recruitment of new carers.
Top tips Perth Autism Support's top tips for an organisation that wants to run a similar project
Tip 1:
Keep it carer centred and tailor the activities and trips around their interests and ideas, to allow ownership and continued engagement in the project.
Tip 2:
Have understanding staff who have a specialist knowledge of autism and who can develop relationships in which the carers feel protected and safe.
Tip 3:
Make carers feel special by taking on board all their ideas and developing projects that they would like to take part in.