I-RAP
Improving Recognition and Understanding of Autism and Personality Disorder
What Did We Do
1. Highlights
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We wanted to find out:
1.
Could problems with autism and personality disorder assessment tools contribute to autism being missed and to misdiagnosis with personality disorder?
2.
What are the similarities and differences in how autistic people and people with a ‘personality disorder’ diagnosis experience their emotions and their relationships and interactions with other people?
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We investigated this by asking:
1.
15 women/AFAB (assigned female at birth) people with a personality disorder diagnosis who did not have an autism diagnosis and did not believe themselves to be autistic
2.
13 women/AFAB people diagnosed or self-identifying as autistic, who had never had a personality disorder diagnosis and did not believe themselves to have a personality disorder
3.
13 women/AFAB people with a personality disorder diagnosis who were also diagnosed or self-identified as autistic
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To:
1.
complete brief questionnaires designed to assess the likelihood that they meet diagnostic criteria for autism or personality disorder
2.
take part in diagnostic interviews to give a more detailed and definitive assessment of whether they meet diagnostic criteria for autism or personality disorder
3.
give detailed feedback on their experiences of filling out the autism and personality disorder questionnaires
4.
take part in an in-depth interview about their personality, thoughts, feelings and behaviours in different situations.
2. Who took part?
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Everyone who took part in this study was a woman or assigned female at birth (AFAB). By assigned female at birth, we mean a person whose gender was assigned by medical professionals as female when they were born, even if the person then later realised they had a non-female or non-cis gender .
1.
15 women/AFAB people with a personality disorder diagnosis who did not have an autism diagnosis and did not believe themselves to be autistic
2.
13 women/AFAB people diagnosed or self-identifying as autistic, who had never had a personality disorder diagnosis and did not believe themselves to have a personality disorder
3
13 women/AFAB people with a personality disorder diagnosis who were also diagnosed or self-identified as autistic
First Question
Could problems with autism and personality disorder assessment tools contribute to autism being missed and to misdiagnosis with personality disorder?
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Specifically:
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Do participants understand and interpret autism and personality disorder assessment measures as intended?
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Could mismatches between participants’ clinical and self-identified diagnoses of autism and personality disorder and their scores on autism and personality disorder assessment tools relate to problems with using these questionnaires to accurately detect and differentiate these two diagnoses?
Why did we want to answer this question?
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We know that one reason autism has sometimes been missed is that some autism assessment tools were designed to pick up on things that may be more strongly related to a ‘male’ or ‘externalised’ presentation of autism than a ‘female’ or ‘internalised’ one. Although an autism assessment involves many components, these assessment tools are one important part of this process.
For more information on this, see the "Gender stereotypes and autism in women and people assigned female at birth" section.
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The questions in the assessments may also be based on stigmatised ideas and/or assumptions, and may use vague language. Additionally, it is possible that the personality traits and behaviours asked about on personality disorder questionnaires could actually be reflective of autism, leading an autistic person to score highly on these questionnaires; or vice versa.
What information did we gather?
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Online questionnaires. All participants first completed some online questionnaires that are “screening tools” i.e. brief questionnaires designed to assess the likelihood that someone meets diagnostic criteria for autism or personality disorder. These were:
1.
AQ-10 (autism questionnaire) [1]
2.
SAPAS (personality disorder questionnaire) [2]
3
SCID-5-PD screen (personality disorder questionnaire using the DSM 5 diagnostic criteria – only the questions about avoidant personality disorder, obsessive-compulsive personality disorder, schizoid personality disorder and borderline personality disorder were asked) [3]
4.
PDS-ICD-11 (personality disorder questionnaire using the ICD-11 diagnostic criteria to assess different levels of “severity” of personality disorder traits) [4]
5.
PAQ-11 (personality disorder questionnaire using the ICD-11 diagnostic criteria to assess different domains or “types” of personality disorder traits) [5]
6.
If they felt comfortable and willing, participants also had the option to complete the ITQ, which is a questionnaire asking about experiences of trauma and the impact of these experiences on their mental health.
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Diagnostic interviews. Participants then met with our PhD student, Elissa Thompson, to take part in two diagnostic interviews. Diagnostic interviews are used to give a more detailed and definitive assessment of whether someone meets diagnostic criteria for autism or personality disorder. They are based on standardised questions and further follow-up questions asked by a trained interviewer. Elissa has been trained in how to ask the interview questions and on how to interpret participants’ answers. The two diagnostic interviews she completed with participants were:
1.
ADOS-2 Module 4 [6]. This is an observational assessment tool used as part of an autism diagnostic assessment, to assess whether someone meets diagnostic criteria relating to social interaction and communication.
2
SCID-5 PD interview [3]. This is a diagnostic interview using the DSM 5 diagnostic criteria. Elissa first looked at the answers participants had given on the SCID-5-PD screening questionnaire, and then asked standardised follow-up questions to assess participants’ avoidant, obsessive-compulsive, schizoid personality and borderline personality traits.
3
Additionally, participants were asked if they were willing for someone who knew them well as a child, or someone who knows them well currently, to be asked some standardised questions about any autistic traits the participant had shown as a child or was showing now as an adult. This interview is called the 3DI-A and was also conducted by Elissa.
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Cognitive interviews. After filling out the questionnaires, participants met with Elissa and took part in a ‘cognitive interview’ [7]. This means Elissa asked them in detail about their experiences of filling out two questionnaires: the AQ-10 (an autism questionnaire) [1] and the SAPAS (a personality disorder questionnaire) [2]. Elissa looked at how each participant had answered each questionnaire. She went through each question on both questionnaires and asked the participants how they had interpreted each question and how they had decided what answers to give. She also asked if any of the questions on these questionnaires, or on any of the questionnaires they had competed, were confusing, upsetting, or hard to answer. Usually Elissa did these interviews on the phone or over video conferencing, but because not everyone wants to use phones or do video call, she offered to come to their home to do these face-to-face or meet at a local community venue if preferred.
How will we use this information?
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We will evaluate whether participants understand and interpret autism and personality disorder measures as intended, and how their interpretation relates to their clinical or self-identified diagnosis. We will then critically discuss whether any identified interpretation problems or differences may contribute to autism being missed and to misdiagnosis with personality disorder.
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We will identify subgroups of participants whose clinical and self-identified diagnoses either match or do not match their scores on the autism and personality disorder assessments. We will then critically discuss whether identified mismatches between participants’ diagnoses and their assessment scores illustrate problems with using these assessments to accurately detect and differentiate these two diagnoses.
Second Question
What typologies best characterise similarities and differences in the interpersonal and emotional experiences of autistic people and people with a personality disorder diagnosis?
Why did we want to answer this question?
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We suspect that one reason autism is sometimes misdiagnosed as personality disorder is that sometimes an autistic person’s behaviour and experiences can look similar to the diagnostic criteria for borderline personality disorder, or other types of personality disorder.
For more information on this, see the "Possible overlaps between autism and personality disorder" section.
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To help us better understand this, we wanted to investigate potential similarities and differences in five areas:
1.
Emotions
2.
Behaviours
3.
Cognition
4.
Identity
5.
Interpersonal interactions
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We wanted to start with understanding people’s lived experience of these areas in depth, in their own words.
How will we use this information?
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We will first summarise information about each participant, by combining information from their qualitative interview with other information they have provided when taking part in this research, including information they have shared about experiences of trauma and past psychotherapy, and information from the diagnostic interview for personality disorder. We will then group together the participants with similar shared characteristics/behaviours/ experiences to make ‘typologies’. For this, we will use the principles of ‘ideal type’ analysis [9] which seeks to systematically compare patterns of experience in a naturally occurring phenomenon; or the behaviours and experiences of autistic women/AFAB people and people diagnosed with a personality disorder.
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We will then further compare the typology groups by looking at individuals’ stated clinical diagnoses and self-identified diagnoses, potentially alongside their scores on the assessment tools. This will help us to see if there are any interesting patterns or groups with shared features that might tell us more about shared and differing traits and characteristics.
5. References
1.Allison C, Auyeung B, Baron-Cohen S, (2012). Toward Brief “Red Flags” for Autism Screening: The Short Autism Spectrum Quotient and the Short Quantitative Checklist in 1,000 Cases and 3,000 Controls. Journal of the American Academy of Child and Adolescent Psychiatry, 51(2), 202-12. 2.Moran, P., Leese, M., Lee, T., Walters, P., Thornicroft, G., & Mann, A. (2003). Standardised Assessment of Personality–Abbreviated Scale (SAPAS): preliminary validation of a brief screen for personality disorder. The British Journal of Psychiatry, 183(3), 228-232. 3.First, M. B., Williams, J. B. W., Karg, R. S., & Spitzer, R. L. (2015). User’s Guide for the SCID-5-PD (Structured Clinical Interview for DSM-5 Personality Disorder). American Psychiatric Association. 4.Bach, B., Brown, T. A., Mulder, R. T., Newton‐Howes, G., Simonsen, E., & Sellbom, M. (2021). Development and initial evaluation of the ICD‐11 personality disorder severity scale: PDS‐ICD‐11. Personality and mental health, 15(3), 223-236. 5.Kim, Y. R., Tyrer, P., & Hwang, S. T. (2021). Personality Assessment Questionnaire for ICD‐11 personality trait domains: Development and testing. Personality and Mental Health, 15(1), 58-71. 6.Hus, V., Lord, C. (2014). The Autism Diagnostic Observation Schedule, Module 4: Revised Algorithm and Standardized Severity Scores. Journal of Autism and Developmental Disorders, 44(8), 1996–2012. 7.Drennan J. (2003). Cognitive interviewing: verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42(1), 57-63. 8.DiCicco‐Bloom, B., & Crabtree, B. F. (2006). The qualitative research interview. Medical Education, 40(4), 314-321. 9.Stapley, E., O'Keeffe, S. & Midgley, N. (2022). Developing typologies in qualitative research: The use of ideal-type analysis. International Journal of Qualitative Methods, 21, 1609406922.
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