Breaks for Siblings of Children with Autism
A story by Perth Autism Support
We provided a range of activities for the siblings of children undergoing assessment for, or with a diagnosis of Autism Spectrum Disorder in Perth.
These included weekly term time groups, days out during the holidays and training about Autism to help the young people understand their siblings.
What Breaks for Siblings of Children with Autism did
A Sibling Co-ordinator was appointed to take the lead on organising the various activities and to be a main point of contact for parents and carers. In order to ensure appropriate support was provided, additional staff were sourced from the existing pool within the activities team at Perth Autism Support.
Each block of activities was advertised via a programme of support which was circulated to all parents of children with autism registered with Perth Autism Support. At the outset of the project information was released to various professionals within Perth and Kinross detailing the type of support offered. Once the programme was circulated, parents/carers could sign their child up for any activities they would like to attend.
In order to engage those who may not readily ask for help, siblings who were known to have a high caring role were targeted and phone calls made to their parents to introduce the service and what could be offered. A slow introduction to the service, including initial meetings at the young person’s house or at our centre, was part of this package. When new parents registered with the organisation the Family Support Worker would sign post to the sibling service where relevant.
Throughout the year various staff at Perth Autism Support attended events and included information regarding the sibling project in their promotional material. These events included the local Young Carer’s Conference and the international Autism-Europe Conference.
Two weekly social groups were offered during term time. These were based in the Perth Autism Support Centre. In order to provide continuous support throughout the year, one day out per week of the school holidays was organised during the Easter and Summer holidays for the siblings as well as a Christmas party. In addition to the above, two six week blocks of sibling training sessions were organised through the year. The break described above provided an opportunity for carers to develop a life outside of their caring role and make connections with others in a similar position, who have a personal understanding of the particular challenges associated with living in an autism household.
The Plan: the young person to attend weekly social groups with other siblings to encourage friendships and provide respite from the home environment, the young person to attend sibling training sessions (Time for Us) to provide an opportunity to explore and express feelings about their sibling as well as find out more information about autism.
What Happened: the young person attended the term time social group each week, where they knew some other young people from previously attending residential camps for siblings with Perth Autism Support. The young person regularly attended and integrated well into the group, though did stay within groups of people which were comfortable for them rather than mixing with others they didn’t already know.
The young person attended the full course of Time for Us and engaged well with the activities. The topics covered allowed for conversations to take place surrounding feelings about the young person’s sibling and promoted awareness of supports that were in place. At the conclusion of the 6 week programme an evaluation showed that the young person felt that they understood what having a sibling with autism meant for them and knew where they would go to get help if they had a question about their sibling or about autism.
The young person continued to access the social group, however following a difficult time at school paired with an increase in incidences of challenging behaviour from his sibling, relationships within the group began breaking down. Weekly 1:1 sessions with the sibling coordinator were started at the conclusion of each social group to allow focused work to take place regarding any incidents which occurred and to provide an opportunity for reinforcement of positive aspects of friendships within the group and reparative work where things had been more difficult with peers.
The young person also accessed activity days out during the school holidays, the aim of which was to ensure that continuous support was offered throughout the school year. The relationship built up between the young person and the sibling coordinator during 1:1 sessions was useful during this time as activity days out were longer than the social group and so there were more opportunities for issues or misunderstandings to arise with the young person and their peers and these could be picked up on and dealt with promptly, avoiding prolonged feelings of instability in the group.
Outcomes were, the young person regularly accessed respite opportunities with peers in a similar situation, with additional support within and outwith the group, the young person had positive interactions with others that they knew, as well as making new friendships, the young person was given information and advice about their sibling’s autism and made aware of support networks and the young person was more able to talk about positive and negative aspects of friendships with the sibling coordinator, and experienced increased stability in the groups
Plan: that the young person would attend weekly 1:1 sessions with the sibling coordinator going through the sibling training programme (Time for Us)
What Happened: The young person was referred to the sibling service through a Senior Social Care Officer at Perth & Kinross Council who was working with the family. It was identified that the young person would not access a group setting but required support in understanding their sibling’s difficulties.
Initially, the young person was hesitant to come to the sessions on their own and attended the first session along with an older sibling. The young person was extremely anxious and did not volunteer much information initially, although through going through ‘getting to know you’ activities the young person did begin to open up.
The young person attended the remainder of the sessions on their own and started making suggestions of things they would like to know in relation to their sibling. The main focus was why the young person’s sibling showed aggressive behaviour towards her. Working through a variety of activities the young person began volunteering more information about their feelings towards their sibling. In addition to providing a place for the young person to explore their feelings, practical strategies were suggested and other avenues of support were pointed out.
Outcomes: The young person completed the course with an increased knowledge of autism and their sibling’s difficulties, the young person expressed that they knew where they would go should they have a question about autism or their sibling, the young person began building a relationship with the sibling coordinator and became more familiar and comfortable with the Perth Autism Support centre and the young person expressed during the final evaluation that they would like to come for a visit to the social group, which is something they had previously said they wouldn’t do.
Plan: The young person would attend activities during the summer holiday period to provide respite opportunities during an unstructured part of the year, peer friendships would be promoted during activity days out and reinforced to the young person in order that they could recognise them and Sibling Coordinator was available to provide 1:1 support on specific issues should this be required.
What Happened: For example: What work was actually done / what went well / what did not work as well / other observations
The young person attended activity days out during the summer holiday period. The groups were split into primary age and secondary age in order to provide peer groups for the young people in attendance. The young person was new to the service so did not know any others in the group prior to attending, though he had met with the sibling coordinator so had a familiar face.
At the beginning of each day, young people within the group were introduced to each other and asked to share a piece of news about themselves if they felt comfortable doing so. The young person was able to share information about themselves and common interests with others in the group were pointed out.
The young person verbalised that they had enjoyed the days out and had an interest in continuing accessing sibling support through term time social groups. The young person then accessed the weekly term time social group which had a mixture of others they knew from the summer holidays, and others they had never met. The young person engaged very well in the group and in the end of term evaluation indicated that they felt they had made friends.
Time was given in the group to discuss anything about autism or their siblings that the group would like to share and the young person entered into discussions with others in the group, supported by the sibling coordinator, about similarities and differences with their siblings.
Outcomes: The young person accessed activity days out during the summer holidays and made connections with other young people in a similar situation
The young person continued accessing support opportunities
What Perth Autism Support has learnedThrough the year of funding we have learned that there is a gap in the support provided to siblings of children with autism spectrum disorder. Through conversation with many of the young people that have been supported through this project, we realised that this is something they have come to accept and many develop their own coping strategies which are not always healthy or beneficial and include distancing themselves from their sibling or throwing themselves so fully into their caring role that they deny their own needs. We feel that the support we have provided within the last year has helped the siblings begin to realise that there is a way this can be balanced – however it requires structures of support, such as those provided by this service, to be in place.
Having this funding in place has helped those who have worked directly with the siblings, who also work children with autism within our organisation, to fully appreciate the impact that the challenges autism brings can have on a family dynamic, which we believe will in turn improve the level of service provided to the whole family. We have learned that it is important to have connections with other services, as those less likely to ask for support themselves may be more likely to engage should another professional or agency who is already involved refer them.