Women and Girls on the Autism Spectrum

527915_430995843644687_2020405065_n
“In recent years, questions have been raised about the ratio of males to females diagnosed as having an autism spectrum disorder (ASD). Overall the most recent studies suggest that the prevalence of autism spectrum disorder is about one in 100, but what of the male/female ratio?

There is no hard evidence of numbers. Various studies, together with anecdotal evidence, have come up with male/female ratios ranging from 2:1 to 16:1.

Whatever the true ratio, clinical referrals to a specialist diagnostic centre such as The National Autistic Society’s Lorna Wing Centre have seen a steady increase in the number of girls and women referred.

Because of the male gender bias, girls are less likely to be identified with ASD, even when their symptoms are equally severe.

Many girls are never referred for diagnosis and are missed from the statistics. At The Lorna Wing Centre, emphasis is placed on the different manifestations of behaviour in autism spectrum conditions as seen in girls and women compared with boys and men.

In our paper (2011) we have identified the different way in which girls and women present under the following headings; social understanding, social communication, social imagination which is highly associated with routines, rituals and special interests. Some examples cited in the paper are:

• Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood, 2007).

• Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined and many have one special friend.

• In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.

• Evidence suggests that girls have better imagination and more pretend play (Knickmeyer et al, 2008). Many have a very rich and elaborate fantasy world with imaginary friends. Girls escape into fiction, and some live in another world with, for example, fairies and witches.

• The interests of girls in the spectrum are very often similar to those of other girls – animals, horses, classical literature – and therefore are not seen as unusual. It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests. Many obsessively watch soap operas and have an intense interest in celebrities.

The presence of repetitive behaviour and special interests is part of the diagnostic criteria for an autism spectrum disorder. This is a crucial area in which the male stereotype of autism has clouded the issue in diagnosing girls and women.

As highlighted above, the current international diagnostic criteria do not give examples of the types of difficulties experienced by girls and women. In order to recognise the different behavioural manifestations, it is important to take a much wider perspective regarding the social, communication and imagination dimensions in addition to the special interests and rigidity of behaviour.

The girls and women learn to act in social settings. Unenlightened diagnosticians perceive someone who appears able and who has reciprocal conversation and who uses appropriate affect and gestures as not fulfilling the criteria set out in the international classification systems.

Therefore a diagnosis is missed.

It is only by asking the right questions, taking a developmental history, and observing the person in different settings, that it becomes clear that the individual has adopted a social role which is based on intellect rather than social intuition. To quote:

“The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008).

It is important to prepare girls for a life of quality as adult women.

Schools need better trained staff to recognise and address the needs of students on the autism spectrum and especially the more ‘subtle’ presentation in girls.

Schools need to be more ‘girl-friendly’ with girl orientated personal, social skills classes.

There needs to be a focus on the ‘hidden curriculum’ which directly teaches the skills that typically-developing girls learn indirectly and intuitively, such as the unwritten rules of girls’ social interactions. Girl orientated personal, social and health education should be part of the curriculum.

Schools educating girls on the autism spectrum should focus on teaching independence and strategies to reduce vulnerability.

They also need to address self-image, self-esteem and confidence building. Gender identity is a big issue for girls, as is emotional wellbeing and fostering mental health. Society has expectations of both men and women, but many women on the autism spectrum believe that these expectations are greater for women.

In the book ‘Asperger’s Syndrome for Dummies’ (Gomez de la Cuesta & Mason 2010), the authors touch on this issue and describe different ‘types’ of women on the autism spectrum. At work, women experience ‘a glass ceiling that is double glazed’ according to the authors. Women experience the same difficulties as other women, plus the difficulties experienced by women on the autism spectrum. These women often go into professions that are traditionally male-orientated. Harder (2010) has produced a booklet called ‘Illustrated glimpses of Aspergers for Friends and Colleagues’. This gives a valuable insight into the difficulties women on the autism spectrum experience at work and provides explanations to colleagues of the different ways in which such women perceive the world.

The difficulties in the diagnosis of girls and women arise if clinicians continue to use the narrow definitions set out in the International Classification Systems.

It cannot be stressed enough that diagnosis and full assessment of needs cannot be carried out by following a checklist. Proper assessment takes time and detailed evaluation is necessary to enable a clinician to systematically collect information which not only provides a diagnostic label, but more importantly, a detailed profile of the person.

We wish to draw attention to the fact that many women with an autism spectrum condition are not being diagnosed and are therefore not receiving the help and support needed throughout their lives. Having a diagnosis is the starting point in providing appropriate support for girls and women in the spectrum. A timely diagnosis can avoid many of the difficulties women and girls with an autism spectrum disorder experience throughout their lives.”

Dr Judith Gould and Dr Jacqui Ashton Smith
Good Autism Practice, May 2011
This post originated from http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx

 

Aging and Autism – Insights from the Perspectives of Adults with High Functioning Autism/Asperger Syndrome

Art by Maria Zeldis
Art by Maria Zeldis

Over a year ago I had the privilege of being part of a research team exploring the experiences of adults with High Functioning Autism/Asperger’s Syndrome, within our community. Whilst most of the data generated in the early stages of the research was  considered comparatively raw, I never the less, picked up on some of the less anticipated and therefore more qualitatively unique themes that emerged from within the data.

One of those themes concerned the prospects of aging  for those with High Functioning Autism.

I nominate this as a unique theme because it may very well represent the first time that any research project has stumbled upon the issue of aging as  derived specifically from the perspectives of adults with high functioning autism themselves.

As an Autism parent I am well versed in the realm of potential fears  that we hold for our children’s care as they enter into adulthood.

The ever-present concern of what ‘will happen in the future’  forms not only a salient question for parent carers, but  is also, according to the words of many with High Functioning Autism,  increasingly forming an even more salient and potentially frightening question  for those with high functioning autism themselves.

‘What will happen to me when I can no longer remain independent within my own home?’

The level of concern that adults with high functioning autism express when discussing the issue of their own aging creates  a disturbing picture of  just what the reality of aged care may well represent for them.

A picture that from my perspective, demands that a clearer understanding of how adults with high functioning autism relate to the current structure of the aged care system and its  facilities, be obtained and worked upon as a matter of policy.

For example, could an adult with high functioning autism, who has been independent prior to old age, cope with having to adapt to the routine of a nursing or aged care home?

Would they cope with being told not only when to eat but what to eat?

Would they deal well with a constant intrusion on their privacy by well-meaning staff?

Many of the adults spoken to described the current version of aged care on offer to them as a ‘nightmare’ of epic proportions.

This descriptor was especially strong among those whose ability to lead  an independent life had been premised largely on their ability to remove themselves from the presence of others in order to eliminate stress when necessary.

To me such descriptions pose some serious questions around aging and autism that need to be addressed. For example :

What is on offer for adults with High Functioning  Autism who have extreme sensory sensitivities to noise and/or the presence of others?

What would happen in the event of a meltdown in such an environment?

Are aged care facilities really geared up for handling the multiple sensory issues and sensitivities that adults with High Functioning Autism can experience?

Research is increasingly showing that when it comes to the concerns of those with High Functioning Autism, we are no longer just  talking about the concerns of a small group of people who crave solitude.

Rather, research is beginning to uncover  the legitimate concerns of an increasingly growing number of adults who not only do not want to be placed in aged care facilities, but who doubt their very ability to survive in them.

These are people whose very quality of life can sometimes depend on their capacity to remove themselves from the presence of others. Their concerns are real and they need to be addressed.

Is this something any of you have thought about?

Have you read any articles that tackle the issue of aging and autism?

If so I’d be extremely interested in hearing more about your views on aging.

Thank you for taking the time to  read this post.