A survey of Scottish autistic people has found that over half have had negative experiences while trying to access mental health services.
The survey, conducted by the Autistic Mutual Aid Society Edinburgh (AMASE), found that autistic people report being denied much-needed services because of their autism diagnosis. The organisation called on ministers to conduct an “urgent review” of policy and practice in mental health service provision for autistic people.
Mental health difficulties like depression, anxiety and obsessive compulsive disorder are more common in the autistic community than in the population at large. Many of the autistic people surveyed were told they were either too complex to treat or that mental health problems were normal for autistic people.
One respondent said: “As soon as my autism diagnosis was confirmed, I was kicked off the mental health waiting list.” Another claimed the Community Mental Health team said they were too complicated to treat.
AMASE argued that the NHS and the Scottish Government were “duty-bound” to provide a standard of care that was available to everyone, regardless of disability. “A diagnosis of autism should not be a reason people are denied access to the mental health services they need, yet our report shows this is a reality,” said the group’s chair, Sonny Hallet.
AMASE’s survey of 50 people is thought to be indicative of problems widely experienced by the autistic community. It found that autistic people were not being taken seriously when trying to communicate their distress, and that staff often had insufficient knowledge of autism and how it interacted with mental health.
Those surveyed said professionals too often ignored autism and did not take onboard the distress of their patients because they were not communicated in the typical way. “They always treat me like I’m just a little bit stressed and I’ll be fine,” said one person. “I was suicidal.”
They always treat me like I’m just a little bit stressed and I’ll be fine. I was suicidal. Autistic person
Long waiting times for mental health services were also identified as a problem. These are common for both autistic and non-autistic people but the report said that “distress may be exacerbated for autistic people due to a failure by services to recognise when they are in crisis.”
The most common form of mental health support was through General Practitioners (GPs), but the report found that there were numerous problems with the service GPs provided.
The time pressure of a regular ten-minute appointment slot created anxiety, phone-based appointment systems were challenging and GP waiting rooms were over-stimulating causing sensory discomfort, according to the survey.
Some respondents also complained of an over-reliance on medication with little or no observation or support. “I was just told to continue taking these medicines as the best of a bad bunch and come back in 12 months,” said one GP user.
The report contrasts these problems with the success of One Stop Shops in Edinburgh, Perth and Inverness. These are drop-in services for autistic adults where they can socialise with peers and get advice.
One Stop Shops are facilitated by staff with expertise in diagnosis, employment, benefits and advocacy. They aim to work with and empower autistic-led groups and facilitate peer support.
Although most of the support provided is not mental-health specific, respondents claimed that having a ‘safe space’ to meet peers, empathetic allies and mentors had been extremely good for their mental health.
“Since discovering the One Stop Shops, I have made more progress in my mental health and general stability and wellbeing than I think I ever have,” said one survey participant.
The One Stop Shop in Inverness was threatened with closure at the start of the year when NHS Highland ended its financial support.
In March though, the service was saved for at least another year thanks to a £25,000 donation from the Scottish Government and a large gift from an anonymous private donor.
The lack of regular funding for One Stop Shops remains a concern though. One person surveyed said it terrified them, and another said they would be lost without the One Stop Shops.
AMASE’s Hallett called upon the government to secure funding for “services which currently do good work such as One Stop Shops”.
Our message is clear: nothing about us, without us. Sonny Hallet, Autistic Mutual Aid Society Edinburgh
To improve regular mental health services, the AMASE report asked for an urgent review of autistic access and improved autism training.
It called for more research into the mental health impacts being undiagnosed until adulthood can have, and on how mental health treatments can be adapted for autistic patients.
“None of this should be done without the involvement of autistic people ourselves,” said Hallett. “Our message is clear: nothing about us, without us.” The Ferret reported in September 2018 that the Scottish government had been criticised for not properly consulting with autistic people when designing its autism strategy.
Responding to AMASE’s report, the Scottish Government’s mental health minister Clare Haughey MSP said: “We are committed to transforming the lives of autistic people and we refreshed our Scottish Strategy for Autism priorities to focus on ensuring people with autism live healthier lives, have choice and control over the services they use, and are supported to be independent and active citizens.
“We are also clear that everyone should have access to the mental health services they need. Our 10-year Mental Health Strategy is how we want to ensure that people get the right help at the right time, free from stigma, and where we treat mental health with the same commitment as we do physical health.
“As part of this, a task force is looking at how we meet changing demands faced by mental health services for young people, and particularly the response people with autistic spectrum disorder, attention deficit hyperactivity disorder or a learning disability.”
The Ferret has also reported allegations that young people with autism are being “failed” by the Scottish school system. Research published by autism advocates in September 2018 said that 34 per cent of parents claimed their autistic children had been unlawfully excluded in the last two years.