Short Break Stories

Autism Initiatives Activity Break Project

A story by Autism Initiatives (Number 6)

We provided short breaks for groups of autistic adults who do not access short break services as part of their regular support.

The breaks provided respite for families and opportunities to learn skills in a new setting, thereby improving a range of quality of life outcomes and reducing parent/carer anxiety.

What Autism Initiatives Activity Break Project did

We did not need to recruit staff we used two of our current volunteers (also autistic adults) to support the trips. We advertised the trips in our newsletter, website and Facebook page and also through PASDA, a carers’ organisation. A variety of criteria was used to determine who was most in need, such as those who did not already receive respite funding, those with carers with long-term or crisis health conditions, those with older carers, and those with partners who were also carers.

There were two breaks of three days each at an activity centre in Cromdale, Highlands, with the opportunity for autistic adults to take part in outdoor activities such as kayaking, archery, mountain biking, zip wiring, as well as developing independent living skills such as cooking and taking care of the building.

For many, this was the first break they had taken from their carers for many years, and it highlighted to some that they needn’t be so reliant on their carers – other support was available.

Carers were not directly involved, but told us that they had more time to focus on other family members, went on holiday, met with friends, or, as one wife of an autistic adult said “I put my feet up and did absolutely nothing – it was great!”

Carers also told us that they were only able to fully relax during the breaks because they already knew our service and they (and those they cared for) felt safe with us.

An autistic man of 43 has been married for 20 years and his wife is effectively his carer. When he first used the service they were having marriage problems and his wife told us that her social circle had reduced to zero over the years and that she felt trapped, with no time for herself. She loved her husband, but didn’t think she could carry on much longer in the marriage, as she felt that there would be no respite from her caring role and also felt that carers’ organisations had focused on parents and that there was no service for her out there.

The break from her husband not only gave her a weekend of seeing family (and doing nothing!) but it also demonstrated that there are services which can help their particular situation. The husband regularly uses the service, and is now using staff for help with some of the issues he had previously relied on his wife for, allowing for a less pressured relationship.

A 35 year old man still living with his elderly mum in the rural north of the Highlands was reluctant to use the local drop-in we provide, as there are few people who attend and he didn’t want to stand out. He would have been happier going to the drop-in in Inverness, but this was a 2 hour trip, so he rarely left the house to mix with others.

We provided transport for the trip and a member of staff spent a number of sessions getting to know him beforehand, he then felt able to attend the activity break. Over the course of the 3 days he very quickly came out of his shell and joined in all of the activities, developing a couple of friendships with people from other areas.

This gave him the confidence to attend the local drop-ins when the break was finished, he also keeps in touch with some of the group via the internet. Not only did his mum get to spend a weekend in England with her brother, but she also has more regular breaks when he attends the drop-ins, giving her more confidence that he will not be completely isolated when she is no longer here to support him.
A 55 year old man retired from work and his wife was concerned that without the structure of employment he had become reliant on her to support and direct him through the week (this had always been the case at weekends, but the respite of going to work had made things manageable). She had spoken to our service about encouraging him to use some of our social groups, as she felt that he was becoming depressed and that it was in turn affecting her mental health, but he could not find anything that interested him.

He attended the activity break reluctantly after an ultimatum from his wife, however he developed a real love of mountain walking whilst away. Upon his return, he joined our monthly mountain walking group, but he also now regularly goes walking on his own. This has led to a clear improvement in his mental health, and his wife is far happier with the level of support she is now being asked to provide.

What Autism Initiatives (Number 6) has learned

We have learned the importance of using varied criteria based on real need that covers as many individuals/carer groups as possible. In particular partners who are carers are often missed, when they can be more desperate for support and the individual concerned is in a more vulnerable position if the relationship breaks down.

We expected that those attending would build relationships that they could then continue when they got back to their respective One Stop Shops, but they have also continued to develop relationships with people from different areas. It has helped in the development of a cross-OSS community.

As mentioned above, one of the successes of the trips was the change to the criteria, which has led to different carer groups to become involved in the service. In particular, we have brought more partners into the service.
Top tips Autism Initiatives (Number 6)'s top tips for an organisation that wants to run a similar project
Tip 1:
Use transparent criteria based on need, demand will almost certainly exceed service provision, so ensuring that people are aware that there is a clear process of selection and that an expression of interest will not guarantee a service is important.
Tip 2:
Plan further in advance than you think you need to as there are always last minute changes, but if you have planned in advance and have contingencies, it will be a smoother process for the beneficiaries.
Tip 3:
Give detailed clear information to all involved and have a two way process of communication at all times when working with autistic adults, as having a shared understanding of exactly what expectations there are from both sides is vital.

"I know what day L is coming, it's written on my calendar every week. I love it when I see her name on a Thursday and I look forward to her coming".

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