Catherine Trezona

Catherine Trezona attended the fifth Asia Pacific Autism Conference (#APAC17) in Sydney in September and shares the latest research into gender differences in the assessment of autism.

ARE AUTISM assessment tools gender neutral?

Autistics and professionals have been discussing this for several years and #APAC17 offered delegates a range of presentations on this topic.

Dr Felicity Chandler from Autism Spectrum Australia (Aspect) outlined a range of hypotheses that have been suggested to explain the lower rates of autism diagnoses in females compared with males. The ratio is currently thought to be 3:1, that is, there are three males with an autism diagnosis for every one female (Loomes, Hull & Mandy, 2017).

Why is autism more commonly diagnosed in males than females? Is it a matter of timing? Are girls better at faking it, masking their incomprehension of the social world by imitations? Do autistic girls share a strength in expressive skills with neurotypical girls? Rigid and repetitive behaviours are less predictive of autism in girls so does this mean special interests are viewed by others as pretend play?

Does the skill of autistic girls in mimicking neurotypical girls lead them to develop a parody of ways to behave during a diagnosis?

Dr Chandler investigated hypotheses such as these by reviewing the autism assessment data of 246 people aged between 16 months to 48 years, who were all given an autism diagnosis at a tertiary referral service.

The clinicians were all experienced in autism assessments and were aware that autistic females might look different from autistic males. Of the 246 people, 189 were male and 57 were female.

The researchers asked a range of questions such as:

• What was the age of the first concern?
• What was the age when seen by the consulting professional?
• What was the outcome of the first professional consultation?

No significant difference was noted across these three questions in this group of 246 people.

Two gender differences in timing were identified. A longer gap between the first professional consultation to diagnosis was seen in the females compared with the males.

A longer gap between the parents’ first concern and the first consultation was also found in the older girls, but not found in the younger group. Overall, girls under 13 years were diagnosed around one year later than boys, but it was unclear why.

In a separate presentation, Tony Attwood shared an update on a pilot study of a new diagnostic tool for assessing autism in girls, called the Girls Questionnaire for Autism Spectrum Conditions (GQ-ASC).

Attwood, Garnett and Rynkiewicz have developed this questionnaire to address the perceived limitations of standard instruments currently used to diagnose autism, such as the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Observation Schedule–2 (ADOS-2).

These two tools have been considered the gold standard for diagnosing autism.

Attwood reviewed an earlier attempt to improve the way girls are assessed for autism. In 2011, Kopp and Gillberg added 18 items for girls between 6-16 years to the Autism Spectrum Screening Questionnaire (ASSQ). This revised tool identified that autistic girls were more likely than autistic boys to avoid demands, be very determined, be careless with their physical appearance and dress, and interact mostly with younger children.

The assessment tool for girls developed by Attwood and colleagues has been tested on a sample of 236 children and adolescents (138 boys and 98 girls) who were aged between 5 years and 13 years and had a diagnosis of autism spectrum disorder – level 1 (without intellectual or language impairment).

Parents were asked to complete the GQ-ASC which was then analysed by the researchers using Principal Component Analysis. Eight key components of the tool were identified:

• Gender identity
• Sensory
• Compliance
• Friendships (girls are more likely to have best friends, enjoy socialising and this higher social interest may provide more motivation for coping mechanisms)
• Social Masking (girls have a greater ability, are more creative, employ coping mechanisms)
• Imagination (girls tend to have more imagination)
• Imitation
• Talents and Interests

The results also showed significant differences in the presentation of autism in males and females with females reporting greater levels of difficulty in behavioural characteristics associated with gender identity, sensory sensitivity, social masking, imagination, imitation, and talents.

The significance of research into gender difference was brought home by Attwood when he described a typical scenario. Girls fake it through to adolescence but then when it ultimately doesn’t work and they are not accepted into teenage girls groups, they throw it all away.

Without an accurate autism diagnosis and appropriate support, girls at this stage may turn to promiscuity, drugs and self- harm as a balm to a damaged sense of self-worth and acceptance.

The pilot study of the GQ-ASC is due to be published in the Journal of Autism and Developmental Disorders in late 2017. The questionnaire will be freely available with the article.