Late diagnosis of autistic women

An Increase in Women Referred for a Diagnostic Assessment for Autism

Over the last decade we have experienced a considerable increase in women seeking a diagnostic assessment for autism, they have either been self-referred or referred by a colleague. The self-referral has often been due to a child being diagnosed autistic and his or her mother identifying with the characteristics of autism in her own developmental history or learning about autism from the media or autobiographies and resonating with the descriptions of an autistic life.

Another pathway to a diagnostic assessment is the recognition of a mental health condition that is associated with autism. This can include depression, an anxiety disorder, borderline personality, addiction, PTSD, chronic fatigue, and an eating disorder. The specialists in these areas may recognise that the woman has an atypical developmental history and profile of abilities for the mental health condition and eventually seek a diagnostic assessment from a colleague specializing in autism.

We have found that prior to the diagnosis of autism, many autistic women have felt misunderstood and invalidated by health professionals. This may be due to health professionals having limited or obsolete training in autism and especially how autistic women can camouflage or compensate for their autistic characteristics.

Screening Questionnaires for Autistic Women

We have designed and evaluated a new screening questionnaire based on our extensive clinical experience in identifying the profile of autistic characteristics in women. The GQ-ASC (Brown et al 2020) is a 22 item questionnaire which can be downloaded from the Forms and Questionnaires section of Tony’s website www.tonyattwood.com.au The questionnaire explores aspects of imagination and play during childhood, camouflaging of autistic characteristics as an adult, sensory sensitivities, socialization and interests. A total score of 57 or higher indicates a high level of autistic traits; sensitive to 80% of confirmed cases. We send a copy of the GQ-ASC to all women prior to their diagnostic assessment and calculate their overall score before the formal diagnostic assessment.

Diagnostic Instruments

The most popular diagnostic instrument for autism is the ADOS-2 (Autism Diagnostic Observation Schedule, Second Edition, (WPS) which was originally developed in the 1980s and the second edition published ten years ago in 2012. Whilst there is a consensus amongst diagnosticians not specialising in autism that the ADOS module 4 is appropriate for a woman who has intellectual and language abilities in the normal range, we have some concerns about this choice.

A recent systematic review and meta-analysis of gender and social interaction and communication abilities of autistic males and females found that autistic females demonstrated significantly better social interaction and communication skills than autistic males and that this characteristic may not be captured by current diagnostic instruments for autism such as the ADOS-2 (Wood-Downie et al 2021).

The ADOS-2 has also been criticized in research studies for not being standardized on sufficient numbers of autistic girls and women, and not being sensitive to the more subtle characteristics in someone who is able to camouflage their autism (Lai et al. 2011; Langmann et al. 2017).  Autistic girls and women are often able to mask their social difficulties during the short observation in a diagnostic assessment. The ADOS-2 has been considered as having a high rate of false negatives for autistic girls and women (Cumin, Pelaez and Mottron 2021)

Our clinical opinion is that while module 4 of the ADOS-2 includes some components that could be included in a diagnostic assessment of women, we do not recommend using the ADOS-2 as the definitive diagnostic instrument. We have developed diagnostic procedures over several decades based on the diagnostic criteria for autism as described in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, APA 2013) and our extensive clinical experience that we consider are more sensitive to the more subtle signs of autism that can occur with autistic women.

What Happens During the Diagnostic Interview?

We engage in a conversation with the person referred for a diagnostic assessment to explore the person’s developmental history and current profile of abilities. We focus on their ability to ‘read’ social situations and non-verbal communication and the development and experience of friendships from early childhood to the adult years. We make a note of any difficulties we observe during the conversation with social, conversational, and emotional reciprocity, frequency and duration of eye contact, facial expressions, gestures, and descriptions of their own and other’s thoughts and feelings when describing personal experiences

We include discussion of any difficulties with interpersonal abilities such as working out people’s intentions, knowledge and beliefs or Theory of Mind abilities, being vulnerable to being deceived, bullied, and socially rejected. We also discuss potential adaptations to autism such as camouflaging and compensation.

To explore camouflaging in more depth we use the 25 item Camouflaging of Autistic Traits Questionnaire or CAT-Q (Hull et al 2018). If you are interested in further information on camouflaging, we recommend our blog Why Camouflage Autism? Compensation can include a career with little social contact such as being a wildlife ranger, preferring the company of males socially and professionally (social dynamics relatively simple) or an artist where social eccentricities are accepted.

We also explore aspects of autism such as sensory sensitivity, interests and hobbies and preference for routines and consistency and any mannerisms that are soothing or express excitement. There is also a cognitive profile associated with autism that includes attention to detail, ability to identify patterns and systems, cognitive rigidity, and retention of factual information. Our clinical experience has been that in comparison to autistic men, autistic women can be recognized for their talents and career in the arts, caring professions, and sport.

We recognize the value of an external informant such as a parent or partner during the diagnostic assessment to confirm and validate aspects of the person’s developmental history and current abilities and challenges. We also explore issues in friendships and relationships, past and present, achieving career goals and promotion and being a mother if she has children.  

During the diagnostic assessment we ask the person a very short and deceptively simple question, “Who are you?” to explore the concept of self. There is often a thoughtful delay before replying with a comment such as “I don’t know who I am, who is the authentic me?”. The sense of self may unknown or suppressed or defined by abilities and interests rather than social network and descriptions of personality.

There are many more aspects of autism explored in a diagnostic assessment and we recommend our online course, Diagnosis for Autistic Girls and Women.

Diagnostic Confirmation

When confirming the diagnosis of autism, we often notice a sense of relief, vindication, and validation, their autism has been ‘discovered’. Gradually there is a process of making sense of past and current experiences through the new lens of autism. There is less self-blame and self-judgement and more self-compassion and confidence with increased agency and the potential for a new identity and authenticity. There is invariably a reduction in the desire to camouflage the characteristics of autism.

We discuss how to explain the diagnosis to a partner, family members, friends, and colleagues, if that is a desired outcome. We anticipate the person may encounter difficulties in being believed because she may not represent society's stereotype of autism. Common responses can include, “Oh but you are too empathic/social/warm/friendly” or “oh aren’t we all a bit on the spectrum!”  It can be helpful to be emotionally prepared and have pre-thought-out and respectful answers for such comments. Fortunately, there is growing awareness and acceptance of the characteristics of autistic girls and women, but some members of our community need more knowledge and time to understand.

The diagnosis can also lead to connecting with other autistic women and benefitting from their guidance and experiences. We have found that this will lead to better self-understanding, and self-regulation and reduce anxiety and depression and the potential for autistic burnout.

References and Resources

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. Fifth edition. Washington, DC

Autism Diagnostic Observation Schedule (2012) Western Psychological Services

Brown et al (2020) Autism in Adulthood 2

Cumin, Pelaez and Mottron (2021) Autism (in press)

Hull et al (2018) Journal of Autism and Developmental Disorders 48.

Lai et al (2011) PLos One

Langmann et al (2017) Research in Autism Spectrum Disorders 34

Wood-Downie et al (2021) Jr Child Psychol. and Psychiatry 62