Autistic girls suffering in silence

Autism may be going undiagnosed in girls, who are highly likely to suffer additional conditions such as eating disorders and self harming, new research being conducted by Bond University’s Centre for Autism Spectrum Disorders (CASD) has found.

CASD director Professor Vicki Bitsika said the centre was part-way through its latest study into anxiety and stress in girls with autism, but a worrying trend was already emerging.

“Boys are more likely to display their autism-based traits using overt behaviour which is easily recognisable as problematic, whereas girls may appear to be behaving appropriately, leading others such as their teachers to assume these girls are coping when they are actually in distress,” she said.

“While girls appear to be more socially competent at school than boys, once they are at home they can manage their distress through self-harm or abnormal eating patterns. We need to be sensitive to the fact they have a difficult internal life despite their external appearances.

“Just one girl to every three boys is diagnosed with autism and we are suggesting that this disparity is not necessary due to fewer girls being affected by this condition, but rather that they are trickier to identify.”

Professor Bitsika said 35 girls, aged between six and 18 years, had taken part in the study to date and Bond was aiming to involve at least another 100.

“We are looking for more girls to be part of the research and need some brave families to come forward and take part, so we can get a better understanding of how this disorder manifests in girls,” she said.

“The criteria we use to assess autism are strongly based on the traits boys display and, if we continue to use the same criteria, we will continue to miss girls.

“The research is showing us these girls are highly anxious and socially challenged, so completing this research and getting a better understanding of girls with this disorder is extremely important.”

Professor Bitsika said girls often masked their issues through rote learning.

“In conversation, these girls can use quite sophisticated language, which is essentially rote learned with little understanding of the meaning behind the words being used. It is not until you question these girls further that the full extent of their impairment may start to emerge,” she said.

“These girls are inadvertently really putting themselves at physical and emotional risk.  They become quite disengaged and trapped in their anxiety and disconnected to the environment around them.

“My fear is if they don’t understand the social world well and don’t have supportive people in their life and are using, for example, an eating disorder to control their anxiety, they are on a downward spiral.”

Professor Bitsika said parents who feared their daughter was experiencing social difficulties, should gently and calmly question her further.

“Asking girls to elaborate on what they’ve told you about a situation is really useful, because if they are using rote learned language it starts to break down,” she said.

“There is a definite discrepancy between girls being able to recite a social rule and follow that social rule.  While they can repeat it, because they don’t actually understand it, they can’t follow through on the rule in daily life.

“They can also be very strict rule followers, who can’t tolerate a rule being broken.”

Professor Bitsika said the multi-modal study involved interviewing the girls, observing them and playing with them, together with a saliva test, over two home visits in which researchers also parents are also interviewed.

“The study is unique because we are not relying on one form of data collection and we’re speaking to the girls directly,” she said.

Bond completed a major study into anxiety and stress in boys with autism, involving about 150 children – one of the largest studies of its kind to be undertaken in Australia – late last year.

The girls research is expected to be completed later this year.

Families on the Gold Coast and Northern New South Wales who are interested in taking part, should contact Jean Stevens at the Bond Centre for Autism Spectrum Disorder on 07 5595 1596 or jesteven@bond.edu.au.  They can also visit http://bond.edu.au/researchers/research-strengths/faculty-research-centr…

(Source: Bond University)