The presentation, recognition and diagnosis of autism in women and girls

Abstract

Purpose Autistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and are more likely to experience misdiagnosis. Design/methodology/approach This paper aims to report a narrative literature review that examines research on the presentation, recognition, and diagnosis of autistic women and girls. Findings Findings suggest that autistic females present differently to males and highlight low recognition of the female presentation of autism among the general public, in social spheres, educational, clinical and forensic settings. This lack of recognition appears to affect the likelihood of females being referred for diagnosis, the reliability of diagnostic assessments and subsequent access to support. Originality/value Recommendations for clinical practice focus on initiatives to increase awareness of the female presentation of autism, improving the diagnostic process for females, increasing female representation within autism training and for future research to support these goals.

The Diagnosis and Management of Autism Spectrum Disorder (ASD) in Adult Females in the Presence or Absence of an Intellectual Disability

“…We refer the reader to a review by Driver and Chester [20], and references therein, who summarise many of the clinical issues regarding autism in females. We will highlight some of these aspects here but with a focus on possible reasons for the differences and on autism in females with a non-syndromic intellectual disability.…”

“…Nonetheless, clinicians can help in better diagnosing females by dismissing the notion of autism as a male disorder and not dismissing concerns of parents. A clinician also needs to make sure that behind the mental illness diagnosis being made of a patient, there may be autism [20].…”

Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being

“… 3 , 4 Indeed, examining the role of gender in diagnostic instruments, studies have found that most of the diagnostic tools used currently were developed based largely on the observation of boys, and that many diagnostic tools, including the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R), are less sensitive to women and girls. 5 Others have found six traits and behaviours which consistently show gender differences, and which are a barrier to young autistic women gaining an autism diagnosis: behavioural problems, social and communication abilities, additional diagnoses/misdiagnosis, relationships, language, and repetitive and restrictive behaviours and interests. 6 Driver and Chester 5 support this, showing that many autistic women are first mis/diagnosed with mental health conditions, overshadowing an underlying autism diagnosis and stopping further investigation.…”

“… 5 Others have found six traits and behaviours which consistently show gender differences, and which are a barrier to young autistic women gaining an autism diagnosis: behavioural problems, social and communication abilities, additional diagnoses/misdiagnosis, relationships, language, and repetitive and restrictive behaviours and interests. 6 Driver and Chester 5 support this, showing that many autistic women are first mis/diagnosed with mental health conditions, overshadowing an underlying autism diagnosis and stopping further investigation.…”

“…While diagnosis might open up additional support and understanding, there may be factors that influence whether the process has a positive effect. The stereotype of autism as a ‘male’ disorder, even within healthcare, can be a barrier to women gaining an autism diagnosis; Driver and Chester 5 found professionals involved in primary care and in diagnosis to be lacking in knowledge and training, while Lockwood Estrin et al 6 found parental concerns, others’ perceptions, a lack of information and resources, clinical bias, and compensatory behaviours on the women’s part to be perceived barriers to diagnosis by autistic women. Barriers to accessing healthcare may be one of the greatest difficulties within the process of diagnosis for autistic individuals, with 80% of autistic adults reporting difficulties around visiting their general practitioner.…”