Content note: this blog makes reference to eating disorders and alcohol misuse
I am autistic and I am not an overly social person, but in the past I have enjoyed social contact through shared interests and hobbies with others. Before COVID-19 I had a long period of ill-health which involved hospital admissions to mental health hospitals, and just as I started to recover the pandemic hit and I became terrified of contact with others. When the restrictions lifted I found it hard to return to any sort of normality and became quite isolated and unable to do most of my regular day-to-day activities. During this period, I had first-hand experience of both social prescribing as referred through my GP, and via my local adult autism service. As I will now recount, the experiences and their impact on my care and safety varied hugely, and demonstrate the importance of funding individualised social prescribing, particularly within autism services.
GP Social prescribing
My GP suggested I access social prescribing. I was quite cynical about it, but went ahead with their advice. Unfortunately my misgivings became reality. The first barrier was that the social prescribers (who were a team of around four) did not have anyone that worked on my two non-working days. As I was unable to meet with them I asked if they could provide information about nature/outdoor wellbeing groups for my non working days. They could not find anything suitable. They then discharged me from their service. If I had been able to access the service the appointments would have been indoors which would have felt too overwhelming, or over the phone, which would have compounded the feelings of isolation. As I understand it their support is usually limited to six sessions of around an hour, which gives a very limited amount of time to build up a sense of trust.
Adult autism service
I am lucky enough to live in an area which has an adult autism service which provides ad hoc ongoing support to people once they have received an autism diagnosis, or if they have an existing diagnosis. This is not the case in all areas of the country, some areas have no post-diagnostic support at all. In one of their online groups I was told about social prescribing. After my initial experience I was nervous to try it and took a bit of persuading to give it a go. Some services would just walk away at the point of reluctance, but they took the time to talk to me about my anxieties and develop ways to support me in feeling safe and at ease such as taking COVID-19 tests before meeting and wearing masks.
Where you feel comfortable
When the social prescriber made contact with me for the first time they emphasised we could meet where I would feel most comfortable. To begin with the only place I felt comfortable was outside, in my local open space. Despite the weather often being incredibly poor at times they never cancelled or changed our plans. For me this was pretty key as routine and structure are incredibly important and one cancelled or changed plan can be enough to derail my entire week. They worked full time and were able to meet me either on my day off, my lunch break or the tail end of my working day.
Building trust and acceptance
For anyone to tackle things they are scared of or find overwhelming it requires a degree of trust, which can take time. Before we even started talking about trying some of the things I was avoiding we had already met more times than the standard GP prescribed sessions. The social prescriber would always remember things I had talked about the previous week, they would always stick to any actions they agreed between the sessions and they gave me their work email/work contact number in case I needed to check anything between sessions. Often NHS services refuse to do this, which can make communication more challenging, especially if it’s something you struggle with.
I felt accepted during our sessions, I wasn’t told I was wrong and felt that my experiences were understood without having to start from scratch by explaining autism. When you’ve faced lots of misunderstanding in your life, being accepted really helps when it comes to having trust in someone supporting you.
There were occasions that I became distressed, upset and extremely anxious, and they were able to pick up on this and support me in a way which didn’t make the situation worse. They always communicated if they were running late. They adapted the length of their appointments based on what goal we were working on, so if we needed to include a bus journey as something we were working on, the appointment was longer.
When I visit a place for the first time I find it really hard as I don’t know where to go or what to do: basic stuff like finding the toilets and not getting lost on return. The social prescriber was always able to help with this, helping me to find things and waiting for me so I didn’t get lost. Once I’ve repeated things a few times I am okay, if I don’t have that support it could mean I leave an activity and don’t feel able to return to it.
I was lucky enough to be matched with a social prescriber that had some lived experience of some of the difficulties I had. Obviously this may not be the case in all instances, but when you can relate to another person and describe things equally in a way that makes sense, it feels easier to then problem-solve how to work on things.
One of the things I wanted to work on was being able to catch buses again. I don’t drive a car and hadn’t travelled by bus since before the pandemic. My bus pass had lapsed and I hadn’t bothered to renew it. The social prescriber encouraged me to renew it and supported the application with a letter. My bus pass was granted. Some social prescribing services wouldn’t offer support with this sort of thing, but having the pass was an important step to being able to travel by bus. The social prescriber took the time to explain how the bus service worked, and supported me to use the bus by planning short journeys to start with and making sure we could get off at any point if it became too overwhelming. Eight months on from starting social prescribing I have been able to catch buses on my own, which has given me more freedom and independence.
Supporting access to other organisations
In Bristol we are lucky enough to have a charity, Diverse, run mostly by autistic people or people with lived experience of autism, for autistic people. The charity runs weekly social activities. The social prescriber encouraged me to find out about one of the groups I was interested in, a tennis group. I was worried it wouldn’t be structured enough for me, but when I made contact with the group leader they advised it was actually quite structured, using various fun games to support tennis skills. The social prescriber offered to meet me there and walk back with me afterwards. Having a familiar face there really helped and being able to talk about how it felt to be in the group after was useful. As they support other people to attend the groups they will also be a familiar face in other sessions even if they aren’t supporting me. Being able to attend the group really lifted my mood, the group felt encouraging and kind, which was something I had really been missing. The group is now an important part of my routine. The social prescriber also supported me to return to bouldering with another autistic person, which will hopefully become another regular activity.
As the social prescriber was working solely with autistic people they had built up a knowledge bank over time of different activities, places and ways of working around barriers. I think this experience is key to supporting autistic people as someone without that knowledge could inadvertently encourage someone into a really unhelpful situation and may not recognise what adjustments they could need or know how to go about asking for them. Sometimes I think it can be hard to self-advocate for adjustments you might need to go somewhere or attend something as sometimes organisations don’t always listen to you or understand, they can sometimes be more responsive to an NHS professional, especially if they are able to explain the detail, which can be difficult at times. Once they’ve started talking to an organisation or service about adjustments it may make them more aware or amenable to individuals in the future. In an ideal world it shouldn’t be the case that we aren’t heard, but instead that we are central to decision making and planning.
Relapse and problem solving
During the period of time I was seeing the social prescriber I was having a really hard time at work and struggled to move forward with some of the goals I had said I wanted to work on. Rather than discharging me and telling me to come back when I was able to do more they continued to support me to work through the problems I was having with work. I have a history of an eating disorder and was having problems with drinking alcohol to manage my anxiety and starting to fall back into the eating disorder behaviours. I firmly believe that without the support at that time I probably would have had a full blown relapse. Instead I managed to plan a way through the work situation, which eventually lowered my anxiety and distress, reversing any relapse. When I returned to working on my goals I was also able to stop drinking.
What was the impact on me?
Whilst I was working with the social prescriber we worked on quite a few things. As a result I was able to do the following:
- Get used to briefly going into indoor places. I was able to buy vegetable seeds for my garden which I have grown and am now eating the produce from! Being able to feel less anxious about going into indoor places wearing a mask has meant I have been able to get my eyes tested, visit the GP and have meals out with my family in pub/café gardens.
- One of my goals was to get back to my hobbies, one of which was caving. I could not imagine being able to be in a group indoors earlier in the year, but I’ve now had four trips and reconnected with the club I caved with. Bouldering is also now a part of my weekly routine and I’m really enjoying it.
- I feel I can start to use buses on my own.
- I felt too scared to go to the face-to-face autism service previously. We arranged to meet there one week to enable me to go to an involvement meeting and a group. I can now attend the service on my own. I needed someone to help me to feel safe in that place, which was the previous barrier. Now that I feel safe, it feels less frightening.
- I was struggling to go anywhere on my own due to being scared of people. This is still something I find hard, but I have started practising it a bit more.
My local autism service only has limited funding for social prescribing and I believe there aren’t many (or any?) other autism services offering this. In the grand scheme of NHS costs and funding it makes sense to enable autism services to offer this sort of support, as it can really help the long term health and social outcomes for autistic people and it’s not a huge amount of money compared to other services. Autistic people can struggle to find services which support their mental health and wellbeing, often facing barriers and misunderstanding.
The current offer of GP social prescribing fails to meet the needs to various groups of people with more explicit needs, due to the short term and restricted nature of the provision. As I have talked about, if I’d not had the right support, there could have been the risk of a further mental health crisis. The cost of me being in a mental health hospital for two months could probably fund one social prescriber for a year who could support hundreds of autistic people. When you look at it like that it puts it into perspective. To me the social prescribing support I received was possibly more like what social work used to look like when there were more resources and social workers had more time to help people in this type of way. Whether it’s through autism service-led social prescribing or something else, the NHS and social care need to talk to autistic people and their families about what help they need, and look at developing and commissioning their services accordingly.
Ruth works part time in admin, outside of work Ruth is an Expert by Experience and enjoys working on projects with others around health improvement. Ruth enjoys all things outdoors including mountains, searching for fungi, photography and caving. Ruth is scared of lots of things including heights, the dark, moths and motorways!