Around 1% of individuals in the UK meet the criteria for Autism Spectrum Condition. More than 70% of autistic individuals have comorbid mental health conditions such as ADHD, anxiety or depression. 82% of autistic people said that support services took too long to offer them support and 86% of autistic people could not find an appropriate service in their area. While this has been echoed by Well In Mind Therapy's own autistic clients, an understanding of the specific barriers experienced when accessing mental health support from the autistic community's viewpoint still seemed to be undeveloped. Research is slowly catching up to the ethos of "nothing about us without us" and turning its focus to the autistic experience instead of deficits, but the next requirement seems to be a focus on the practical and meaningful support and accommodation of autistic service users and clients. In support of this autistic led viewpoint we created a survey to help identify the specific barriers to mental health support experienced by participants, with the aim of further identifying meaningful accommodations to improve access and outcomes.
An online survey containing 38 questions was created. The survey was hosted on Google Forms and no identifying or registration information was required from any participants. Participants were not asked to declare names, locations or email addresses. No identifying medical information was recorded. Access to the survey was achieved using an online link. The survey accepted multiple choices and free text answers.
The access link was made available to online autistic forums and groups. 71% of participants identified as female, 13% identified as male, 8% identified as non-binary and 3% preferred not to say. Participants were between the ages of 18 and 70, with the majority being between 25 and 45 years of age. 92% were white British and 8% Asian British.
The survey was only available online and was limited to people with internet access, technological literacy and/or support completing questionnaires. One of the participating groups was open to female members only and would therefore by necessity skew participant demographics.
18-24 : 3% / 25-30 : 18% / 31-35 : 13%
36-40 : 18% / 41-45 : 26%. / 46-50 : 3%
51-55 : 11% / 56-60 : 5% / 61-65: 0%
66-70: 3%
Female: 71%
Male: 13%
Transmasculine: 3%
Non-binary: 8%
Prefer not to say: 3%
Homosexual: 3%
Bisexual: 16%
Heterosexual: 39%
Asexual: 24%
Other: 5%
White: 92%
8%: Asian British
Some significant answers were:
Some significant answers were:
Autistic: 100%
ADHD: 58%
Sensory Processing Difficulties: 18%
Learning Difficulties: 3%
Some significant answers were:
Some significant answers were:
Sound: 97%
Visual: 66%
Touch: 55%
Smell: 50%
Vestibular: 5%
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Transport: 3%
Limited sitting: 21%
Chronic pain: 8%
Mobile with support: 16%
Some significant answers were:
Non-verbal periods: 24%
Dyslexic: 8%
Deafness: 3%
Executive dysfunction: 79%
Time blindness: 29%
Face blindness: 3%
Eye contact aversion: 61%
Memory problems: 58%
Alexithymia: 61%
Dyspraxia: 3%
Some significant answers were:
Some significant answers were:
Very comfortable: 50%
Comfortable with general technology: 26%
Able to use with minimal support: 16%
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Full disclosure: 8%
Only at my explicit instruction: 39%
None - all information private: 11%
Brief summaries of sessions: 3%
Administrative information only: 8%
Some significant answers were:
Some significant answers were:
Yes - privately: 37%
Yes - NHS: 53%
No: 8%
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
Some significant answers were:
The survey feedback clearly showed that the autistic community deeply understood the difficulties they experienced in accessing meaningful mental health support. They are also able to eloquently and clearly express their needs and required adaptations. It is meaningful to notice how frequently empathy and patience were mentioned in the feedback. As well as the consistent call for therapists to be educated, knowledgeable and trained. The need for autistic led training and practice is loudly conveyed.
Practical accommodations to support sensory and communication needs are simple to implement but offer immense equalisation in order to ensure access to support. The importance of valuing the autistic lived experience, believing expression of discomfort or distress and being open to empowering autistic clients (as well as following their lead) are repeatedly expressed.
It is saddening to see the general disappointment and loss of faith the autistic community expressed towards mental health support services and there seems to be a shift towards using private services despite the cost burden (the same cost burden which then makes such access limited and infrequent).
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