“Girls and women with Asperger syndrome are almost invisible – a minority within a minority. Too often and for too long they have fallen through the established diagnostic process centred on male characteristics”, runs author Dr. Christine Preißmann’s key message – she is a doctor and affected by it herself – as she describes in her book “Surprisingly Different – Women and Girls with Asperger”.
More girls affected than is assumed
For a long time the professional medical world has gone with the assumption of a gender ratio of one girl with Asperger syndrome for each six to eight affected boys. More recently, experts have been discussing whether a distribution of 1:4 or 1:2.5 corresponds rather better to reality. Many European countries are reporting increasing numbers of girls and women having diagnosis results within the autistic spectrum. Yet unlike the situation with boys, these are usually found out only in adolescence. “At present, getting a correct diagnosis and adequate support seems to be rather hit and miss”, says Preißmann. The affected girls usually suffer greatly from it because they often spend years pondering the cause of their “otherness” and its related solitude. Blame for this mainly lies with the current diagnostic criteria, which tend to use as their reference the male manifestation of Asperger syndrome. “It’s high time for a book that comes from a female autistic angle”, says the general practitioner discussing her aims.
Girls fall through the diagnostic grid
“The symptoms of Asperger syndrome manifest in girls more subtlely and are usually less severe”, says Preißmann with knowledge coming from personal experience. Girls she says are usually calmer and can better control their behaviour than affected boys. Therefore, they would be rather perceived as “strange”, but not comprehensively impaired. For example, a lack of eye contact is more likely to be attributed to shyness with women than to be associated with autism. “In order to not attract attention and to be able to be as “invisible” as possible, girls with Asperger syndrome often imitate other girls, trying to copy the behaviour, facial expressions and gestures of the other girls”, writes Preißmann. Unlike most boys, girls with Asperger syndrome are definitely able to have a best friend. Personally specific interests typical to Asperger syndrome, which are characterised by frequent arranging and categorising, are usually acted out when alone. This is similar to boys. However the girls’ concerns are often more similar to those of their peers, and therefore do not stick out. It’s rather the intensity and quality of these concerns which really do. All these criteria must be considered in the diagnosis, “so as to end the silent suffering of many girls and women with autism”, says the doctor.
Attentiveness of teachers is called for
Preißmann also draws attention to the unique position of teachers when it comes to noticing abnormalities in girls. They are usually the only ones in a position to compare a student with the entire class community. When a combination of the following characteristics is present, teachers and psychologists according to Preißmann should consider when looking at any girl that an autistic disorder may be present:
- social withdrawal and isolation
- social immaturity and naivety
- being teased by female peers
- uncertainty in contact with others
- passivity in class learning and lack of interest in extracurricular school activities
- interests that are lived out via unusual means of expression
- lack of eye contact
- poor handwriting
- repetitive behaviours
- motor difficulties
- poorer academic performance than is to be expected as a result of intelligence
- behaviour overall described as “strange” and not age-appropriate
What good is an early diagnosis?
“Early diagnosis can prevent many difficulties, humiliating events and injuries which affected people experience in their lives”, says Preißmann. An early diagnosis is also advantageous in terms of providing adequate support. This is needed by girls and women with Asperger syndrome, especially in the following areas of life:
- social conduct and social expectations
- relationships, friendship and partnership
- self-confidence and mental health
- physical health and well-being
- adaptive skills during puberty, when attaining adulthood and in ageing (menstruation, hygiene, sexuality experiences in menopause, etc.)
- leisure and sporting activities that are geared to their interests, abilities and conditions
- professional opportunities and career planning
- their personal development
- the varied possibilities of life design
Here both group training as well as participation in self-help groups, and individual measures as are used in psychosocial and occupational therapy, have proven to be helpful.
Little points of assistance with a big impact
Often there are also very small, simple things that can make life considerably easier for girls with Asperger syndrome. All those in Preißmann’s book who are affected describe their schooling as brutal and extremely stressful, because to them school meant isolation, stress and confusion. Many girls with Asperger syndrome have big problems with unexpected events and are overstimulated quickly. If however they are informed about upcoming changes such as room swaps or free periods, the fears in the girls often reduce considerably. When able during breaks to pull into a quiet classroom, or for instance make requests about having a little more time available for class work, most of the girls described great relief in their otherwise stressful school life. These specifics are presumably not too difficult for teachers to implement if they are known to them
A path between false adaptation and stereotypes
Preißmann knows how important individuality is for those affected. Women with Asperger syndrome need help when it comes to adapting to existing social conventions, or simply not to adapt and be happy in their very own way. The publication focuses less on the “normalisation” of the affected girls and women, but rather on reducing the burdensome symptoms and giving relieve to the families. Those who are looking for a starting point can obtain the contact details of the regional associations via the association for the advancement of people with autism, “Autism Deutschland e.V.“.