Beyond the Square

Parents assisting kids with autism are meeting at Autism SA on Wednesday 19th November at 7.30pm.

MISSION STATEMENT

We are a group of parents who have come together with the aim of supporting Autism SA and raising awareness of Autism Spectrum Disorders (ASDs) and raising funds to enable Autism SA to provide services for children and young people with Autism Spectrum Disorders in metropolitan South Australia.

Autism SA services over 3000 families and provides support services, early development programs, respite, diagnosis, advice and information to children, young people and adults with Autism Spectrum Disorders and their families. The aim of PAKA is to support Autism SA in this service provision in several key ways:

•    By building stronger relationships between people with ASDs and their families and Autism SA.  The autism community in South Australia is diverse but shares a common purpose, and PAKA aims to build on that purpose by creating awareness of autism issues and supporting Autism SA in its work. We envision PAKA as a part of Autism SA, in which parents and friends of the Autism SA community work together towards this common purpose, building reciprocal relationships along the way.
•    By raising awareness of ASDs in the community.  There is a lack of awareness of ASDs in the general community.  This lack of awareness has an impact on the funds available for the provision of support services for people with ASDs.  We anticipate that an increased awareness of ASDs and issues faced by people with ASDs will result in an increase in financial support to Autism SA.
•    Supporting our children. Support services for our school aged children are minimal due to a general lack of funding.  In order to improve support services for these children we will raise funds to enable the delivery of support services.
•    As there is a lack of social skills training available in Adelaide, it has been decided to concentrate our fund raising efforts on raising funds for social development groups for children with ASDs in the metropolitan area.  The age group for participation in the social skills development groups has been set at 8-15. Social skills training is essential to the development of people with Autism Spectrum Disorders, which is characterised by difficulties with communication, relationships and understanding social norms. Children with autism are often vulnerable to bullying, exploitation and abuse. Social skills groups teach children self protective behaviours and provide a safe and supportive space for young people to discuss these issues with their peers.

If you would like to be involved in PAKA, please contact Amanda Tulloch-Hoskins on 82710982 or Caroline Hill on 82999138 or paka1@iprimus.com.au

The Pattern of Abilities and Development of Girls with Asperger’s Syndrome Dr Tony Attwood - September 1999
The overwhelming majority of referrals for a diagnostic assessment for Asperger’s Syndrome are boys. The ratio of males to females is around 10:1, yet the epidemiological research for Autistic Spectrum Disorders suggests that the ratio should be 4:1. Why are girls less likely to be identified as having the characteristics indicative of Asperger’s Syndrome? The following are some tentative suggestions that have yet to be validated by academic research, but they provide some plausible explanations based on preliminary clinical experience.
• It appears that many girls with Asperger’s Syndrome have the same profile of abilities as boys but a subtler or less severe expression of the characteristics. Parents may be reluctant to seek a diagnostic assessment if the child appears to be coping reasonably well and clinicians may be hesitant to commit themselves to a diagnosis unless the signs are conspicuously different to the normal range of behaviour and abilities.
• We have a stereotype of typical female and male behaviour. Girls are more able to verbalise their emotions and less likely to use physically aggressive acts in response to negative emotions such as confusion, frustration and anger. We do not know whether this is a cultural or constitutional characteristic but we recognise that children who are aggressive are more likely to be referred for a diagnostic assessment to determine whether the behaviour is due to a specific developmental disorder and for advice on behaviour management. Hence boys with Asperger’s Syndrome are more often referred to a psychologists or psychiatrist because their aggression has become a concern for their parents or schoolteacher. A consequence of this referral bias is that not only are more boys referred, clinicians and academics can have a false impression of the incidence of aggression in this population.
• One must always consider the personality of the person with Asperger’s Syndrome and how they cope with the difficulties they experience in social reasoning, empathy and cognition. Some individuals are overtly active participants in social situations. Their unusual profile of abilities in social situations is quite obvious. However, some are reluctant to socialise with others and their personality can be described as passive. They can become quite adept at camouflaging their difficulties and clinical experience suggests that the passive personality is more common in girls.
• Each person with Asperger’s Syndrome develops their own techniques and strategies to learn how to acquire specific skills and develop coping mechanisms. One technique is to have practical guidance and moral support from one’s peers. We know that children with Asperger’s Syndrome elicit from others, either strong maternal or ‘predatory’ behaviour. If the person’s natural peer group is girls, they are more likely to be supported and included by a greater majority of their peers. Thus girls with Asperger’s Syndrome are often ‘mothered’ by other girls. They may prompt the child when they are unsure what to do or say in social situations and comfort them when they are distressed. In contrast, boys are notorious for their intolerance of children who are different and are more prone to be ‘predatory’. This can have an unfortunate effect on the behaviour of a boy with Asperger’s Syndrome and many complain of being teased, ignored and bullied by other boys. It is interesting to note that some boys with Asperger’s Syndrome actually prefer to play with girls who are often kinder and more tolerant than their male peers.
• The author has conducted both individual and group social skills training with boys and girls with Asperger’s Syndrome. Experience has indicated that, in general, the girls are more motivated to learn and quicker to understand key concepts in comparison to boys with Asperger’s Syndrome of equivalent intellectual ability. Thus, they may have a better long-term prognosis in terms of becoming more fluent in their social skills. This may explain why women with Asperger’s Syndrome are often less conspicuous than men with the syndrome and less likely to be referred for a diagnostic assessment. The author has also noted that, in general, mothers with Asperger’s Syndrome appear to have more ‘maternal’ and empathic abilities with their own children than men with Asperger’s Syndrome, who can have great difficulty understanding and relating to their children.

• Some individuals with Asperger’s Syndrome can be quite ingenious in using imitation and modelling to camouflage their difficulties in social situations. One strategy that has been used by many girls and some boys is to observe people who are socially skilled and to copy their mannerisms, voice and persona. This is a form of social echolalia or mirroring where the person acquires a superficial social competence by acting the part of another person. This is illustrated in Liane Holliday-Willeys intriguing new autobiography, titled, “Pretending to be Normal’.
I could take part in the world as an observer. I was an avid observer. I was enthralled with the nuances of people’s actions. In fact, I often found it desirable to become the other person. Not that I consciously set out to do that, rather it came as something I simply did. As if I had no choice in the matter. My mother tells me I was very good at capturing the essence and persona of people. At times I literally copied someone’s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating. (p.22)
Girls are more likely to be enrolled in speech and drama lessons and this provides an ideal and socially acceptable opportunity for coaching in body language. Many people with Asperger’s Syndrome have a prodigious memory and this can include reciting the dialogue for all characters in a play and memorising the dialogue or ’script’ of real life conversations. Knowing the script also means the child does not have to worry about what to say. Acting can subsequently become a successful career option although there can be some confusion when adults with Asperger’s Syndrome act another persona in real life as this can be misconstrued as Multiple Personality Disorder rather than a constructive means of coping with Asperger’s Syndrome.
• When a child would like more friends but clearly has little success in this area, one option is to create imaginary friends. This often occurs with young girls who visualise friends in their solitary play or use dolls as a substitute for real people. Girls with Asperger’s Syndrome can create imaginary friends and elaborate doll play which superficially resembles the play of other girls but there can be several qualitative differences. They often lack reciprocity in their natural social play and can be too controlling when playing with their peers. This is illustrated in Liane Holliday¬Willey’s autobiography.
The fun came from setting up and arranging things. Maybe this desire to organise things rather than play with things, is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment.
When involved with solitary play with dolls, the girl with Asperger’s Syndrome has total control and can script and direct the play without interference and having to accept outcomes suggested by others. The script and actions can be an almost perfect reproduction of a real event or scene from a book or film. While the special interest in collecting and playing with dolls can be assumed to be an age appropriate activity and not indicative of psychopathology, the dominance and intensity of the interest is unusual. Playing with and talking to imaginary friends and dolls can also continue into the teenage years when the person would have been expected to mature beyond such play. This quality can be misinterpreted as evidence of hallucinations and delusions and a diagnostic assessment for schizophrenia rather than Asperger’s Syndrome.
• The most popular special interests of boys with Asperger’s Syndrome are types of transport, specialist areas of science and electronics, particularly computers. It has now become a more common reaction of clinicians to consider whether a boy with an encyclopaedic knowledge in these areas has Asperger’s Syndrome. Girls with Asperger’s Syndrome can be interested in the same topics but clinical experience suggests their special interest can be animals and classic literature. These interests are not typically associated with boys with Asperger’s Syndrome. The interest in animals can be focussed on horses or native animals and this characteristic dismissed as simply typical of young girls. However, the intensity and qualitative aspects of the interest are unusual. Teenage girls with Asperger’s Syndrome can also develop a fascination with classic literature such as the plays of Shakespeare and poetry. Both have an intrinsic rhythm that they find entrancing and some develop their writing skills and fascination with words to become a successful author, poet or academic in English literature. Some adults with Asperger’s Syndrome are now examining the works of famous authors for indications of the unusual perception and reasoning associated with Asperger’s Syndrome. One example is the short story, “Cold” in ‘Elementals: Stories of Fire and Ice’ by A.S. Byatt.
• Finally, the author has noted that some ladies with Asperger’s Syndrome can be unusual in their tone of voice. Their tone resembles a much younger person, having an almost child like quality. Many are concerned about the physiological changes during puberty and prefer to maintain the characteristics of childhood. As with boys with Asperger’s Syndrome, they may see no value in being fashionable, preferring practical clothing and not using cosmetics or deodorants. This latter characteristic can be quite conspicuous.
These tentative explanations for the apparent under representation of girls with Asperger’s Syndrome have yet to be examined by objective research studies. It is clear that we need more epidemiological studies to establish the true incidence in girls and for research on the clinical signs, cognitive abilities and adaptive behaviour to include an examination of any quantitative and qualitative differences between male and female subjects. In the meantime, girls with Asperger’s Syndrome are likely to continue to be overlooked and not to receive the degree of understanding and resources they need.
Reference
Holliday-Willey, L. (1999) Pretending to be Normal: Living with Asperger’s Syndrome. London. Jessica Kingsley Publications.

Siblings Australia, the only national organisation committed to siblings of children with special needs, is facing a funding crisis. The federal government has rejected a proposal for further support in 2008 and so the office has been forced to close in three weeks. You can support the organisation in its attempts to turn this around by signing a petition on its website www.siblingsaustralia.org.au <http://www.siblingsaustralia.org.au>
Siblings are too important to ignore!

Kate Strohm
Executive Director

Spectrum Art Exhibiton.

Presented by Autism SA

Carclew, North Adelaide.

24-29 Feb, 3-7, 10-14 March .

E. move, Aspie Live.

Presented by Autism SA

The Parks Community Centre - Cowan Street, Angle Park.

8 March 2pm, 5-7 March 7pm Cost Full price $18.00, C$14.00, C$10.00

Contact Autism SA for details.

Hello out there. Please write to us and say hello. We would love to hear from you and to hear you share your story. Tell us what you would like to see on the site. Regards Barbara. Coordinator of Beyond the Square.

After 3 years of meeting weekly during school terms, the 2 groups providing education and experience in social issues facing females with Asperger’s syndrome run by Autism SA staff are now in maintenance sessions of 2 per term until the end of 2007.

The reason is heavily bound by the funding situation. The funding for this group came from a source external to Autism SA and is no longer available. While the mother’s of the females lucky enough to have been included are grateful for the time their girl’s have had there is now very little opportunity left for these girl’s. A number of these girls only received a matter of months in the program. Yet one of Autism SA’s own recently presented a paper at a conference revealing that evidence supports the notion that females with Asperger’s need such education and experience as an ongoing service opportunity.

This is because individuals with Asperger’s experience difficulties and need assistance as an ongoing thing as they navigate the complicated social world they find themselves in. They also experience difficulties in transferring knowledge or generalising from one situation to another. Beyond the Square recognises that the needs facing females with Asperger’s Syndrome as an ongoing concern for all those concerned about the health and wellbeing of the minority group.

If anyone is able to help raise funds, if anyone has any suggestions please let us know or Autism SA.
I fear that unless parents work collaboratively towards forging a meaningful life for our girls their needs will become lost to all but us.

Featuring Tony Attwood, Temple Grandin, and 7 more experts. (2006). Asperger’s and Girls. Future Horizons Inc, Arlington.

At last a book relating specifically to females with Asperger’s. Includes chapters on dating and marriage, education, transition from school to work, puberty, friendships and more. Prof. Tony Attwood talks about understanding diagnosis in the female population. Must have for parents.

Available at www.bookinhand.com.au. You can also phone toll free on 1800 505 221.