Based on the survey carried out by AMASE (Autistic Mutual Aid Society Edinburgh), Spring 2018. The full results are discussed in our report ‘Too complicated to treat’? Autistic people seeking mental health support in Scotland‘.
The main aim of the survey was to gather experiences of autistic people in accessing and being treated by mental health services in Scotland, in order to identify and highlight any challenges they faced, what is working well, and also gather views on what autistic people would like to see done differently in this area. A secondary aim of the survey was to look at how the Autism One Stop Shops may play a part in Scottish autistic people’s mental health support networks. AMASE publicised the survey on Twitter, via our email and facebook networks, and at a drop-in discussion event we organised in Edinburgh.
In total, 50 autistic individuals across Scotland were surveyed anonymously using the online questionnaire.
Due to our initial focus on the Edinburgh area, where AMASE is based, 50% of respondents described themselves as being based in the Edinburgh area, followed by 16% in the Highland Council area, and another 18% in the Lothians. Other respondents’ locations included Fife, Glasgow and surrounding areas, Dumfries and Galloway, Ayrshire, Angus, and Shetland and Orkney.
This short draft report will focus on the secondary aim of the survey, exploring how the Autism One Stop Shops (OSSs) have played a part in our respondents’ mental health.
The survey consisted of 6 questions focused on autistic individuals’ experiences of mental health provision. Question 6 focused specifically on the role of the OSSs:
“Has Number 6 (or any other One Stop Shop – please specify) had an impact on your mental health and wellbeing? If so, how?”
The OSSs mentioned by the respondents were Number 6 in Edinburgh, Number 3 in Perth, and Highland (HOSS) in Inverness.
Of the 50 respondents, 66% had used one or more of the OSSs mentioned. Of those:
64% described the OSS experiences having had a positive on their mental health, 18% mixed and 15% negative. The remaining 3% of answers were either neutral or did not elaborate sufficiently to draw clear conclusions.
The positive experiences tended to highlight the importance of the OSSs helping to provide greater stability in day to day life, being a non-judgemental source of advice, reassurance and a place to talk, and providing access to peers and allies who have a good knowledge of autism.
Several mentioned the impact of having people to talk to who could empathise with autistic experience, both peers and staff:
“[specific issues were] understood without my even needing to explain”
“They listen to my concerns or need for support and make me feel like a person, my feelings are valid and they will try and support me in the ways they can”
“I could talk to other actual people who KNEW HOW I FELT and felt the same”
“I feel accepted and welcomed and that they actually know how I feel about things and know why I need help and give it to me if I need it.”
“I trust and value the staff for their empathetic skills and understanding of autism”
“They just get exactly what it is like to have ASD.”
“For the first time in my life, I feel that I have a safe and non-judgmental place to go to, with people I trust to talk with, whether I am in crisis, or just have small worries I’d like to prevent from getting bigger, or even for just practical advice on work.”
Many respondents described dramatically positive impacts that the OSSs had on their lives:
“Highland One Stop Shop HOSS has been the best thing that’s happened for me in all my adult life. Their support is priceless”
“by providing support in [benefits] and other day to day matters meant I could finally break free from an abusive relationship […] I believe that without [their] help I would possibly be dead or very likely in a much worse position mentally.”
“they have supported me to become independent so as I don’t need support anymore.”
“Since discovering Number 6, I have made more progress in my mental health and general stability and wellbeing than I think I ever have.”
“Thank god there is somewhere like that to go. We would be lost without them.”
The mixed and negative results tended to focus on anxieties around how the services are structured and issues with accessibility, sometimes relating to the services’ lack of resources or capacity, or their inability to signpost to other more relevant services:
“Attempted to get other support but they are so oversubscribed that I’ve had no luck”
“it’s very hard to build rapport when staff are coming and going fairly frequently”
“number 6 has increase[d] my anxiety levels as the[y] do not have the funding to support all the people needing help”
“I only wish that they had more resources in general, and someone trained in mental health problems, so that they could help more people (and be easier to access), and be less powerless in the face of crises.”
“it is less accessible if you have anxiety issues due to location.”
“I felt that the one stop shop wasn’t the right [place] to signpost me to for the services I needed”
Although it was not raised in the survey questions, some individuals also expressed anxieties or related comments about the idea of the services’ longevity being in question:
“The closure or dilution of the One Stop Shop services across Scotland is going to create a profound crisis in years to come.”
“Their lack of guaranteed yearly funding terrifies me, as I don’t know what I’d do without them.”
“I’ve known so many people who are helped by this service in the Highlands HOSS, please ensure it is properly funded.”
“We would be lost without them.”
The overwhelmingly positive experiences reported of the OSSs in relation to mental health (64% positive, 15% negative) stand in stark contrast to experiences reported with mental health services and GPs in the rest of the survey, in which 52% of respondents described overall negative experiences compared to just 18% having had mostly positive experiences. While 42% of respondents reported specific problems with being listened to, taken seriously or being misunderstood by GPs and MH professionals, the comments on the OSSs repeatedly highlight the value placed by service users on being listened to, understood and empathised with. he OSSs mentioned are doing far better in MH support of autistic people in Scotland than many GPs and specific MH services. The negative experiences above highlight the impact of cuts to valued services; adequate resources to sustain reliable services are crucial.
We feel that lessons can be learnt from what the OSSs seem to be doing well in this regard, and their contribution to autistic people’s mental health should be better recognised,understood and supported long term.
AMASE (Autistic Mutual Aid Society Edinburgh) is an independent autistic people’s organisation based in Edinburgh. All of the committee are on the autistic spectrum, and our goal is to help autistic people to help make each other’s lives better through peer support, advocacy and education.
About the author
This report was compiled by Sonny Hallett (current chair of AMASE), with help from other AMASE committee members, and advice from Catherine Crompton.