Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults. Laura Foran Lewis, RN, PhD University of Vermont

Transcription

1 Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults Laura Foran Lewis, RN, PhD University of Vermont

2 AUTISM SPECTRUM DISORDER (ASD) Diagnostic and Statistical Manual of Mental Disorders (DSM-5): Persistent deficits in social communication and social interaction Restricted, repetitive patterns of behavior, interests, or activities

3 AUTISM SPECTRUM DISORDER (ASD) Affects 1 in 100 adults 1-2 Purpose: Approximately half of individuals with ASD have average/above average intelligence 2 & many function independently 3-4 To examine s to formal diagnosis for adults with ASD Many experience depression, anxiety, & suicidal thoughts 5-6 For every 3 known cases of ASD, there are 2 unknown cases of ASD 7 Despite evidence of significant s to formal diagnosis, no studies examine s to diagnosis for adults

4 Research Questions: QUAL: What s do adults with ASD face in reaching a formal diagnosis? QUAN: What is the incidence Mixed methods design: and severity of each of Exploratory sequential design these s? (Creswell & Plano Clark) Step 1 Qualitative analysis of interviews with adults with ASD about diagnostic experiences to identify what s to diagnosis exist Step 2 Use findings from qualitative analysis to build survey to explore severity of each identified Step 3 Quantitative analysis of survey data to determine incidence & severity of s

5 QUAL Research Question: What s do adults with ASD face in reaching a formal diagnosis? Secondary analysis of data from two phenomenological studies 1) Experience of being formally diagnosed with ASD as adult 2) Experience of being self-diagnosed with ASD as adult Data analysis: Krippendorff s qualitative content analysis Qualitative Strand

6 Demographic characteristics of the qualitative sample (N = 114) Note: Sample size is provided for each demographic characteristic to account for missing data. Total sample size N = 114 Qualitative Strand

7 9 emergent themes Themes Anxiety Cost Access to adult ASD specialists Fear of not being believed Inability to describe symptoms Mistrust of healthcare professionals Stigma Complexity of healthcare system Lack of perceived value of diagnosis Qualitative Strand

8 Qualitative data used to derive in-vivo items for quantitative survey Example Quote from participant: I've never sought a formal diagnosis mostly because I don't think it would help with anything. There's no drugs that can cure me, so why bother involving doctors? Item derived from data: Belief that there is no benefit to being diagnosed because there is no treatment or cure Qualitative Strand informs Quantitative Strand

9 QUAN Research Question: What is the incidence and severity of each of these s? Data collection: Online survey via Limesurvey Recruitment via online forums & message boards 4-point Likert-type scale to rate severity of each Quantitative Strand

10 Instructions: Please read the following list of s and indicate what impact, if any, each had on your own diagnostic experience. If you have been formally evaluated and diagnosed, please think back on your experience of receiving a formal diagnosis and indicate the degree to which you experienced these s when you were being diagnosed. Quantitative Strand

11 Data analysis: Descriptive statistics Post-hoc independent samples t-tests & ANOVA Incidence: Number of participants scoring item as a (somewhat, moderate, or extreme) Total number of participants Severity: Mean Likert score of all responses (*Note: no influence = 1) Number of participants scoring item as extreme Total number of participants Quantitative Strand

12 Demographic characteristics of the quantitative sample (N = 665) Quantitative Strand

13 Themes Anxiety Cost Access to adult ASD specialists Fear of not being believed Inability to describe symptoms Mistrust of healthcare professionals Stigma Complexity of healthcare system Lack of perceived value of diagnosis I realized that even if I hadn t been in significant denial as a teen, I would never in a million years have been capable of going to the appointment because of the severity of my social anxiety. 24 year old female, self-diagnosed

14 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Theme Anxiety Barriers to Formal Diagnosis Incidence Severity N Item Anxiety about making an appointment with a mental health professional Anxiety about going to an appointment with a mental health professional Anxiety during an appointment with a mental health professional Concern about sharing my life story/private information with a stranger, e.g. mental health professional I have not met before this as a Mean Likert Score (1-4) SD this as an extreme

15 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Theme Cost Barriers to Formal Diagnosis Incidence Severity N this as an extreme Item this as a Mean Likert Score (1-4) SD Cost of appointment with a mental health professional Cost of travel to see a mental health professional Cost of formal evaluation for a diagnosis I do not have health insurance or recently did not have health insurance Cost of appointment would not be covered by health insurance Cost of formal diagnosis would not be covered by health insurance

16 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Theme Access to adult ASD specialists Barriers to Formal Diagnosis Incidence Severity N Item Difficulty finding an ASD specialist who would diagnose adults Difficulty finding an ASD specialist who also specializes in adults Difficulty finding an ASD specialist who also specializes in my gender Difficulty finding any mental health professional this as a Mean Likert Score (1-4) SD this as an extreme

17 Themes Anxiety Cost Access to adult ASD specialists Fear of not being believed Inability to describe symptoms Mistrust of healthcare professionals Stigma Complexity of healthcare system Lack of perceived value of diagnosis I always have concern in general I ll be told off by a doctor telling me I m making things up resulting in me trying to cover as much up as I could for decades. 30 year old male, self-diagnosed

18 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Theme Fear of not being believed Barriers to Formal Diagnosis Incidence Severity N this as an extreme Item this as a Mean Likert Score (1-4) SD Concern that I will not be listened to Concern that I will not be believed Concern that I will be told I am making up symptoms Concern that I will be evaluated but will not be diagnosed with ASD Concern that I will be evaluated but will not be diagnosed with ASD because I am an adult Concern that I will be evaluated but will not be diagnosed with ASD because of my gender

19 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Theme Inability to describe symptoms Barriers to Formal Diagnosis Incidence Severity N Item Inability to adequately communicate symptoms to a provider, e.g. due to anxiety or not having the right words this as a Mean Likert Score (1-4) SD this as an extreme Sadly enough I both suck in recognizing feelings, and knowing what s normal and what s not. 30 year old male, self-diagnosed

20 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Barriers to Formal Diagnosis Incidence Severity N Theme Mistrust of healthcare professionals Item this as a Mean Likert Score (1-4) SD this as an extreme Poor past experiences with a healthcare professional prevent me from making an appointment Poor past experiences with a mental health professional prevent me from making an appointment Past experiences being misdiagnosed Past experiences being blamed for symptoms Mistrust of mental health professionals Mistrust of healthcare professionals Mistrust of institutions in general, e.g. healthcare system, schools, employer Concern about having a formal record of ASD, e.g. needing to report diagnosis to employer, school, etc

21 Themes Anxiety Cost Access to adult ASD specialists Fear of not being believed Inability to describe symptoms Mistrust of healthcare professionals Stigma Complexity of healthcare system Lack of perceived value of diagnosis My husband was less thrilled [than I was to seek a diagnosis] and doesn t want me to be open about it because he thinks people (like his mother) will call me a retard. 40 year old female, formally diagnosed

22 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Barriers to Formal Diagnosis Incidence Severity N Theme Stigma this as an extreme Item this as a Mean Likert Score (1-4) SD Cultural norms where I live do not recognize adults with ASD, e.g. ASD is seen as a childhood disorder only Personal stigma about ASD Personal stigma about mental illness Stigma about ASD from friends and/or family Stigma about ASD from others in my community

23 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Theme Complexity of healthcare system Barriers to Formal Diagnosis Incidence Severity N Item I am unable to navigate the healthcare system to get insurance I am unable to navigate the healthcare system to make an appointment with a mental health professional Being bounced around between providers Long wait times when booking appointments with mental health professionals this as a Mean Likert Score (1-4) SD this as an extreme

24 Note: Red indicates incidence >80% of sample; mean Likert score >2.5; or severity rated as extreme in >30% of sample Barriers to Formal Diagnosis Incidence Severity N Theme Lack of perceived value of formal diagnosis Item Personal belief that there is no way to diagnose ASD in adults Experience being told that there is no way to diagnose ASD in adults by a professional Experience being told that there is no benefit to being diagnosed as an adult by a professional Confidence that I have ASD and do not need formal evaluation to confirm Belief that there is no benefit to being diagnosed because I am already self-aware Belief that there is no benefit to being diagnosed because there is no treatment or cure Belief that there is no benefit to being diagnosed because there are no services available for adults Belief that there is no benefit to being diagnosed because I do not need any services/assistance this as a Mean Likert Score (1-4) SD this as an extreme

25 OTHER IMPLICATIONS Most frequently occurring & most severe s relate to fear of not being believed Importance of trust-building by professionals Recognition that more severe ASD symptoms may increase s to diagnosis (e.g. alexithymia, anxiety) Pilot intervention: use of Internet for initial contact with professionals? Gender distribution suggests delayed diagnosis may be more common in non-males Consistent with previous research Females report s as more severe than males Need to revise diagnostic tools to increase sensitivity for non-males

26 QUESTIONS?

27 REFERENCES 1. Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., et al. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psy- chiatry, 68(5), 459. doi: /archgenpsychiatry Centers for Disease Control and Prevention [CDC]. (2014). Prevalence of autism spectrum disorder among children aged 8 years Autism and developmental disabilities monitoring network, 11 sites, United States, Morbidity and Mortality Weekly Report, 63(SS02), Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2(2), doi: /aur Tobin, M. C., Drager, K. D. R., & Richardson, L. F. (2014). A sys- tematic review of social participation for adults with autism spectrum disorders: Support, social functioning, and quality of life. Research in Autism Spectrum Disorders, 8(3), doi: /j.rasd Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger s syndrome attending a special- ist diagnostic clinic: A clinical cohort study. Lancet Psychiatry, 1(2), doi: /s (14) Lehnhardt, F. G., Gawronski, A., Pfei er, K., Kockler, H., Schilbach, L., & Vogeley, K. (2013). The investigation and di erential diagnosis of Asperger syndrome in adults. Deutsches Arzteblatt International, 110(45), doi: /arztebl Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., & Brayne, C. (2009). Prevalence of autism- spectrum conditions: UK school-based population study. The British Journal of Psychiatry, 194(6), doi: /bjp. bp