I-RAP
Improving Recognition and Understanding of Autism and Personality Disorder
What Did We Do
1. Highlights
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We wanted to understand people’s experiences of being diagnosed with ‘personality disorder’ and seeking an autism diagnosis.
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We did this by asking:
1.
15 women/AFAB people with a pre-existing personality disorder diagnosis who had since been diagnosed or self-identified as autistic, or who thought they might be autistic.
2.
15 clinicians who worked in services providing care for autistic people and/or people with ‘personality disorder’.
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to take part in semi-structured interviews. For our lived experience group, this was to help us understand how their diagnosis came about and why they felt autism may fit with their understanding of themselves. For clinicians, this was around what helped them in differentiating these two diagnoses and what would make this an easier process.
2. Why did we do this study?
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A priority from the WTCO scoping exercise was that autistic individuals, especially AFAB/women, were being missed or mis-diagnosed with ‘personality disorder’. Additionally, where someone already had a ‘personality disorder’ diagnosis, this was reported as making it harder to detect that they were autistic, especially where services worked separately.
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The outcome of this exercise was that people wanted to understand more about the relationship between autism and personality disorder. This was around similarities and differences, as well as how a certain diagnosis may or may not fully explain life experiences.
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Within the I-RAP study, therefore, we wanted to gain a better understanding of people’s diagnostic history, including:
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Perspectives on ‘personality disorder’ as fitting them or not.
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Why there may be confusion between autism and ‘personality disorder’.
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What got in the way of recognising that they were autistic and/or accessing autism assessments.
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What helped in recognising that they were autistic and/or accessing an autism assessment.
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What may be helpful to mental health clinicians with less knowledge of autism.
3. Who took part?
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We interviewed:
1.
15 people with lived experience of being diagnosed with a ‘personality disorder’ who had since been diagnosed as autistic/self-identified as autistic or were questioning if they might be autistic.
2.
15 staff working in services for autistic people or people with ‘personality disorder’.
4. What information did we gather?
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Semi-structured interviews with people with lived experience focused on:
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How the person came to know they are autistic/came to think they may be autistic.
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Whether they agreed with their personality disorder diagnosis and why.
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Whether they wanted to get an autism diagnosis and why.
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Experiences of facilitators and barriers to discussing possible autism with health professionals and gaining a diagnosis where this was wanted.
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Views on possible key facilitators and barriers including:
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Gender stereotypes, confusion between personality disorder and autism traits, communication difficulties, and the limitations of current assessment methods.
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Semi-structured interviews with people clinicians working in services focused on:
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Experiences of differentiating autism and personality disorder in clinical practice.
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Experiences of assessment tools and challenges in using standardised measures.
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Views on possible key facilitators and barriers including:
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Gender stereotypes, confusion between personality disorder and autism traits, communication difficulties, and the limitations of current assessment methods.
5. How will we use this information?
1.
To share information with people with lived experience of a personality disorder diagnosis who think they may be autistic, about why autism is sometimes missed or misdiagnosed in people diagnosed with a personality disorder, why misdiagnosis of autism as personality disorder may occur, how to recognise autism in themselves, and challenges they may encounter through the process of questioning their diagnosis.
2.
To create a resource for people working in primary care or secondary care services who want to understand more about differentiating ‘personality disorder’ and autism. This will include dos and don’ts to help prevent autism being missed or misdiagnosed as a personality disorder.
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