Breaking down a recent study by Kentrou et al. (2024): Perceived misdiagnosis of psychiatric conditions in autistic adults
Disclaimers:
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A note on language: The language in the DSM, including the use of the word disorder (D in acronym), some find this harmful, while others prefer the language “disorder.” When this language is used, it is because, as mental health professionals, we need to use this same language when referring to “diagnoses” in the DSM. In addition some Autistics find the use of the level system helpful in identifying the level of support needed, while others view it as an overly simplistic way of defining something that’s fluid, and may feel it’s harmful and minimizing. The beauty is that each individual gets to choose what language feels validating and affirming to them. Inspired by Dr. Jennifer Mullan, we use the term, “therapy participant” rather than “client” or “patient,” as we work toward decolonizing therapy.
Educational Purposes: The information presented here is for educational purposes, and not meant to diagnose, treat or cure medical conditions or challenges, including neurodivergence (including mental health challenges), or physical health.
Hey all! Today we are going to be talking about perceived misdiagnosis of psychiatric conditions among Autistic adults, looking specifically at a recent study conducted by Kentrou et al. (2024). You might remember a while back we did a blog on masking traits in young women and briefly touched upon how many Autistic individuals, in particular women, do not receive an Autism diagnosis until adulthood. The blog also noted gender differences in the diagnosis of Autism, such as differences in masking and the presentation of Autism in men compared to women. If you would like to read more about this, here is the direct link. While the previous blog covered one factor that might contribute to late diagnosis of Autism (i.e. masking/camouflaging), Kentrou et al. (2024) discuss another major factor which could contribute to late diagnosis, which is the misdiagnosis of psychiatric conditions.
Background Information on Perceived Misdiagnosis and Gender Differences
Co-occurring psychiatric conditions are highly prevalent among Autistic adults, who face an increased risk of several psychiatric conditions including (but not limited) to anxiety, depression, bipolar disorder, obsessive-compulsive disorder, schizophrenia, and suicidality. Additionally, Autistic adults are at an increased risk of chronic medical conditions, such as autoimmune conditions, gastrointestinal issues, hypertension, and diabetes. Autistic women in particular are more frequently diagnosed with anxiety, depression, bipolar disorder, schizophrenia, dementia, and suicidality compared to their male counterparts.
A key factor contributing to this risk of misdiagnosis is diagnostic overshadowing, whereby Autistic traits are overlooked or misattributed to psychiatric conditions. While there are multiple psychiatric conditions that have overlap in symptomology, it is incredibly important that both the literature and healthcare professionals have a more comprehensive understanding of the presentation of Autistic traits, particularly among women. For instance, when social camouflaging (which refers to strategies used to blend into social settings and conform to allistic social norms) and other compensatory strategies are employed–either consciously or unconsciously–observable Autistic traits are less apparent to healthcare professionals. This can create an added barrier to an Autism diagnosis, often resulting in delayed diagnosis until adulthood.
With respect to gender differences in the diagnosis of Autism, Kentrou et al. (2024) discuss the concept of the “female Autism phenotype,” which refers to the distinct behavioral presentation of Autism that is more common among women and may differ from male phenotypes. For example, some women may present milder communication difficulties, greater social awareness, and higher social motivation relative to men. These differences might give women an advantageous ability in social interactions to observe social cues, resulting in some Autistic women camouflaging characteristics more successfully than men.
Participant Characteristics and Methodology
The study’s sample consisted of 1,211 Autistic adults in the Netherlands, with 52% being women. The study explored the frequency of perceived psychiatric misdiagnoses prior to an Autism diagnosis, as well as gender differences in Autism diagnoses. To summarize participant characteristics, all were 16 years or older at the start of the study (with the average age being 42 years old), they all had a diagnosis of Autism, the majority were moderate to highly educated, and the majority of participants received their diagnosis in adulthood. Participants were asked about prior diagnoses, including the condition(s) they were diagnosed with and whether this diagnosis was later perceived as a misdiagnosis. To assess Autistic traits, researchers used the Autism Spectrum Quotient-Short questionnaire, a 28-item self-report measure scored on a 4-point Likert scale (1=”definitely agree,” 4=”definitely disagree”).
Key Findings—
Kentrou et al. (2024) found that 42.9% of the sample had received at least one psychiatric diagnosis prior to a diagnosis of Autism, with women (53.7%) being more likely than men to report prior diagnoses. In addition, participants who were older when diagnosed with Autism were more likely to report at least one prior psychiatric diagnosis.
The second finding reported by Kentrou et al. (2024) looked at the proportion of respondents who reported at least one perceived misdiagnosis of a psychiatric condition prior to receiving an Autism diagnosis (24.6%). Women (31.7%) were more likely than men to report at least one perceived misdiagnosis. Participants who were older when diagnosed with Autism were more likely to report at least one prior perceived misdiagnosis.
The average number of perceived misdiagnoses was 0.38, with 15% of the sample reporting only one psychiatric misdiagnosis, 6.4% reported two perceived misdiagnoses, and 2.5% reported three or more perceived misdiagnoses. Furthermore, women (N=637) reported significantly more perceived misdiagnoses than men (N=574).
Lastly, Kentrou et al. (2024) found that 24.8% of participants were diagnosed with Autism at 18 years old or younger, 9.8% were diagnosed between the ages of 18-24, 16.9% were diagnosed between the ages of 25-34, 21.2% were diagnosed between the ages of 35-44 years old, 18.3% were diagnosed between 45-54 years old, and 9% were diagnosed at 55 years or older.
Summary
Two important limitations of this study should be noted: the sample was composed entirely of participants from the Netherlands, and data was self-reported. Nevertheless, Kentrou et al. (2024) found that one in four Autistic adults, and one in three Autistic women, reported a perceived misdiagnosis prior to receiving an Autism diagnosis. The findings of this study align with existing literature on psychiatric misdiagnosis among Autistic adults.
Misdiagnoses of psychiatric conditions are linked to long pathways for diagnosis and delayed recognition of Autism, which can lead to negative experiences involving feelings of distress, isolation, anxiety, or confusion. The findings of the present study highlights the need for more comprehensive training for both mental health practitioners and healthcare professionals to improve their understanding of Autism presentations, reduce misdiagnosis, and address the specific needs of Autistic women. It is essential that such professionals understand and recognize the nuanced ways Autism presents, the impact of compensatory strategies, and the gender-related differences in the diagnosis of Autism.
Reference
Kentrou, V., Livingston, L. A., Grove, R., Hoekstra, R. A., & Begeer, S. (2024). Perceived misdiagnosis of psychiatric conditions in Autistic adults. EClinicalMedicine, 71, 102586. https://doi.org/10.1016/j.eclinm.2024.102586
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