Kate E. Reynolds Autism Agony Aunt

Articles by Kate E Reynolds

Latest article for SEN Magazine 'The Trouble with Sex'.

Published in SEN Magazine Issue 62 Jan/Feb 2013:

Autism Spectrum Disorders in Females
Kate Reynolds examines why autism spectrum disorders in girls are often identified late by health and education, how signs differ to boys and what changes need to happen to improve early diagnosis and optimise life chances of girls affected.
Background
The most common Autism Spectrum Disorders (ASDs) seen by health and education services are autism disorder (also called childhood or classic autism) and Asperger’s syndrome. Autism disorder is characterised by speech delay and florid signs of impaired social interaction, communication and imagination. Wing’s research found a ratio of 2:1 male to female prevalence of autism disorder and 15:1 in Asperger’s syndrome, suggesting that girls were less prone to the more subtle forms of ASDs. Certainly, males are more susceptible to organic conditions, such as autism and girls appear to have some protection from the genetic variants that are thought to cause autism.
However, it is becoming clear that girls simply may be under-represented in Asperger figures because the history of research into ASDs is based on males, from its inception with Kanner’s and Asperger’s work in the mid 1940s onwards. Diagnostic tools - using interviews, specific tasks and categorisation of behaviours result in quantitative scores for analysis – were developed according to male phenotypes (Gould & Ashton-Smith: 2011) The ways in which Asperger’s syndrome manifest in girls have not been adequately investigated and only in the last 5-10 years has attention been focused on females.
Signs in girls
Diagnosis of ASDs is based on a Triad of Impairments, identified by Wing and Gould in 1979. In Asperger's syndrome, in each of these areas of impairment, girls can present differently to boys:
1.Social interaction:
(Holtman et al: 2007)
•Boys with ASDs tend not to appear motivated to be socially interactive, but girls on the spectrum do. However, girls have a history of failures in achieving and maintaining friendships.
•Girls gravitate towards older girls, who tend to mother them and act as a form of social ‘protection.’
•Girls may be socially immature and make a preference to play with much younger children who are not challenging and would allow the ASD child to dominate play, giving them the predictability and control autistic children crave.
•Asperger girls may ‘adopt’ a less able peer, perhaps someone with a learning difficulty, who may themselves be marginalised so they are open to being dominated by the ASD child.
•Girls with Asperger’s may be unnecessarily dependent on their mothers (or other primary carer) whom they regard as their ‘best friend’ and confidante in a social world which they find challenging and frightening.
1.Social Communication:
•Boys engage in disruptive behaviours, whereas girls will be persistently ‘ill’ to gain what they want or control their situation.
•ASD girls tend to act passively and ignore daily demands, while boys become disruptive in response.
•Girls appear more able to concentrate than boys, who become distracted more easily and disruptive.
•Girls tend to learn social behaviours by observation and copying, which can disguise their social deficits.
•Girls may find the idea of social hierarchy difficult, so they can respond inappropriately to people in authority, such as teachers
•In similarity to boys, ASD girls need to learn the rules of ‘small talk’ which they often find incomprehensible as a pastime. Girls difficulties tend to be masked by their passive behaviours and ability to mimic without understanding

1.Social imagination:
Parents may state that they feel their daughter is non-specifically ‘odd’ or has experienced difficulties but without being able to pinpoint the cause.
•Imaginative play does exist, but it is intense in nature, often focused on stereotypical girls’ interest, such as dolls, make-up, animals and celebrities – which is why girls on the spectrum may not seem that different to non-spectrum females. The key is the intensity and quality of these special interests – they are exclusive, all-consuming and experienced in finite detail.
•Repetitive questioning well beyond the age non-spectrum children do this.
•Poor empathic skills and lack of social interest.
•Lack of interest in the classroom.
•Non-specifically being perceived as ‘odd’ by teaching staff.
•Immature, impulsive and unusual behaviours.
•An inability to ‘move on’ even with basic matters, for example, throwing away clothes which the child has long since fitted, or old toys from baby/childhood. This ‘cluttering’ behaviour outlines their difficulties with change.

It seems that girls on the autism spectrum are less noticeable than boys because they are less disruptive and have an ability to mimic behaviours (Attwood: 2012.) However, they lack social understanding and any deep knowledge of language. This becomes increasingly obvious at secondary school level, when:
•There are no younger children to associate with, when peer groups are more mixed and any ‘protection’ may have dissolved.
•Additionally multiple stimuli (such as crowds in corridors, screams in playgrounds) and changes to routines which occur at secondary education can increase individual anxiety hugely.
•Adolescence, involving unstoppable changes such as menstruation and the growth of breasts and body hair, can profoundly affect ASD girls, heightening anxieties due to lack of control over what is happening.

Mental Health Issues for Girls
Anorexia Nervosa has been called ‘female Aspergers’ because around one fifth of girls who present with anorexia have traits that are peculiar to the autism spectrum. Around 20-30% of anorexic patients are perfectionists and demonstrate rigid modes of thinking and behaviour, these being autistic features. Anorexia offers ASD girls a positive – lack of nutrition prevents menstruation and physical development.
It is not until puberty that girls’ social difficulties become more obvious – particularly as they enter secondary school when they can become the subject of bullying or be generally marginalised and perceived as ‘strange.’ Unlike boys, they become withdrawn, depressed and quiet rather than aggressive.
Profound anxieties may be demonstrated in altered behaviours, lower grades at school, poor work performance in women, poor sleep patterns, low mood/depression and obsessive behaviour.
Research from 2011 found that many women who were later diagnosed as being on the autism spectrum initially were thought to have learning difficulties, personality disorders, obsessive compulsive disorder or eating disorders. This differential diagnosis could be related to lack of awareness of how ASDs present in females.

Changes needed
•More research is essential to identify features of ASDs, particularly Asperger's syndrome, in girls and train health and teaching staff about presentations in females.
•Diagnostic tools need to be adapted to incorporate gender differences and ensure that scores attributed to behaviours include the range of symptoms in girls.
•Observation of girls in the social setting of school, paying close attention to friendships, is vital for diagnosis.
•Seeing how girls manage during unstructured time is also telling, since those with Asperger's syndrome would have difficulty identifying how to fill the time and would not ‘enjoy’ the freedom but be lost and anxious during that time.

The earlier diagnosis is made, the sooner intervention can be implemented. Within a school, this might mean:
•Use of visual timetables or other visual jigs to underpin communication and increase predictability
•Emphasis on visual and sensory play for younger children
•Occupational therapy input to address any sensory issues and enhance co-ordination and musculo-skeletal abilities
•Programs to improve knowledge of facial expressions and understand the physical signs of feelings and attach names to those emotions.
•Social programs, such as the Australian ‘Friends For Life,’ involving exercises and language games performed by small groups of ASD children
•Buddying between individual ASD children and older volunteer children in school, who can offer social support and advice about social interactions
•Structuring breaks or lunchtimes for girls with ASDs.
•Awareness among teachers, so that they do not suddenly present tests to ASD (and therefore other) children, highly structured lessons and help to ASD kids in unstructured time and careful positioning of ASD children in the class, away from distracting children, and warning of sensory stimuli in the class
•Close liaison with parents to understand if school is causing high anxiety which is being acted out at home, for example, friendships issues and disruptive behaviour in school
•Parents are also key to supporting enhanced language skills, using games provided by school or speech and language therapy

All research confirms that the earlier the diagnosis of ASDs if followed by appropriate interventions will optimise the person’s life chances by increasing independence, understanding and accumulation of language and social abilities. To date, the way females present with Asperger’s syndrome has not been thoroughly examined and the findings used to mould diagnostic tools, which remain male dominated. The All Party Parliamentary Group on Autism (APPGA) is recommending that there is a lead teacher on autism in every school, who has relevant expertise and training – this follows a survey which found that 80% of respondents thought teachers were not given sufficient training to support autistic children. Of course, that training would need to include gender issues because teachers are in a key position to identify ASD in girls early and implement strategies to enable them.

Further information
Kate Reynolds, BSc (Hons) RGN, PGDipHEd, PGDipCouns. is an autism mother, counsellor, blogger and author for Jessica Kingsley publishing:
www.autismagonyaunt.com

References:
Attwood, T. (2012) The Pattern of Abilities and Development of Girls with Asperger’s Syndrome. Undated archived paper at: www.tonyattwood.com.au
Gould, J. and Ashton-Smith, J. (May 2011) Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum Good Autism Practice Vol. 12 No. 1 p 34-41
Holtman, M. Bolte, S. and Poustka, F. (2007) Autism Spectrum Disorders: Sex Difference in Autistic Behaviours Domains and Coexisting Psychopathology Developmental and Child Neurology 49 p 361-366

Published in Nasen's Special Magazine, January 2013

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KATE E REYNOLDS BSc(Hons)Soc.Pol. PGDipHEd. PGDipCouns. RGN
HOW TO INCLUDE AUTISTIC PUPILS IN SOCIAL GATHERINGS AT SCHOOL.
Introduction:
Official figures for children who have autism spectrum disorders (ASDs) in the UK are around 1:100 of all children (Baird et al: 2006). These figures may need to be reviewed as more girls are identified (Begeer: 2011). The autism spectrum represents a vast range of abilities in terms of academic achievement, ability to access the curriculum, and social/communication skills. Progressive government policies, the movement towards inclusion in and parental preference for mainstream education means children who have more extreme special needs related to their ASD increasingly are seen in mainstream schools.
Issues at Social Gatherings:
One key characteristic of many children with ASD is a need for predictability, without which they may react with aggression or other maladaptive behaviours caused by fear and anxiety. Transitions from one situation or one task to another can be incredibly difficult for these children whose response may be refusing to participate or clear distress displayed in emotional outbursts and self-injurious behaviours.
There are other neurological reasons why social gatherings present immense challenges to children with ASDs:
1. Sensory issues may relate to any of the senses.

Children with ASD can be overwhelmed by visual or auditory stimuli, much of which non-spectrum children will filter out. Sounds and sights that we might consider ‘background’ are experienced as acute and often alarming to an autistic child. In addition, common smells and different textures can be extreme to ASD pupils.
2. Proprioception.

This is the dovetailing of efficient co-ordination of muscles, tendons, ligaments and joints and includes spatial and body awareness. In children with ASDs, poor proprioception may make gross motor skills difficult, for example riding bicycles or running. Other ASD pupils may lack proprioceptive input which they gain by self-stimulatory behaviours (‘stimming’) such as head banging or rocking which are soothing. Stimming is used by higher functioning as well as lower functioning autistic pupils and commonly will be seen when a child has had an emotional outburst.
3. Processing disorders.

This is the relatively slow ability to understand and process verbalisation, especially if there are other noises to contend with the teacher’s voice. Additionally, the ASD pupil’s ability to formulate an answer, especially if it is verbal, may be hampered. It also applies to written information.
4. Body space and crowds.

Many children with ASDs find body space an issue. Some are unable to discern appropriate personal space and can invade this without realising it. The ‘arm’s length’ rule is helpful, because it gives the child a physical measure of a circle around themselves and others which they can be taught should not be infringed in school.
Other ASD children may find the proximity of others a real challenge, particularly in a crowded party atmosphere. They may react with aggression or other dysfunctional behaviours, caused by fear.
5. Literal understanding and visual learning.

Most children with ASDs take verbalisations literally or may develop more language but without depth of understanding. Additionally, most learn by observation without necessarily marrying this with verbalisation. In the context of social gatherings with a theme, particularly Halloween, realistic costumes or entertainers performing ‘tricks/jokes’ can alarm younger or more extreme autistic children. Even HFA teens can be distressed and have literal interpretations of these.
Strategies:
It is important that teachers implement strategies to address these issues in order to facilitate effective inclusion in all aspects of school life.
1. Information from Parents.

I would argue that parents are an underestimated and valuable source of information about children with ASDs in a class. It is also important to liaise with parents to ensure any work you do in school is continued at home, to mutual benefit and, of course, that of the child. Home/school books are useful to an extent but hurried or unclear written words can lead to misinterpretation and even animosity. If you are introducing a new concept, or simply need parental support with work you are doing with a child with ASD, either speak directly to the parent at the end of school or (as many of these children use school transport) pick up the telephone. The flow of information can significantly reduce difficulties at social gatherings in school.
ASD ‘passports’ comprise a booklet of the child’s likes/dislikes, fears/fascinations and how best to handle emotional outbursts. These are either carried with the child, located centrally or in the teacher’s file and can be helpful if read before the stressful environment of school gatherings.
It is equally important to feedback to parents how an event at school has progressed. Social gatherings and parties are rites of passage for non-spectrum children but may be something autism parents actively avoid due to poor past experiences. Any such event at school may enable parents to start or resume taking their offspring to social gatherings outside school especially if the child has a level of ‘success’ in managing these events, usually classified by parents as avoidance of emotional outbursts or extreme physical behaviours, in school. This is enhanced if parents don’t have fallout of behaviours at home after an event at school, which is common since ASD children tend to hold in emotions and release them in the safety of the home.
2. Exploit visual acuity.

Most autistic children are visually acute; what they lose in verbalisation they make up with visual memory. Social stories and visual cues are useful tools for those with verbal communication difficulties and younger ASD children – older and those with higher functioning autism (HFA) may find this patronising, but still appreciate written information about what will happen at social events. They can identify transitions that will take place from one activity to the next or perhaps one place in the school to another during the social event. Photographs of any adult who might be helping the ASD child 1:1 or new equipment for activities are also useful. It’s helpful to give the following information to parents:
• Likely numbers of children
• Whether or not the autistic child will know the other children
• Specifically where the event will take place – eg the main hall, the child’s class room (not just ‘in school’) – with a basic map
• That there is a quiet area/room if the social event becomes overwhelming

Be explicit in asking parents of autistic children to read through the story with their child before the party/event. Many children with ASD need information to be reiterated to enable them to absorb it, due to processing disorders. This may be patent to SENCOs but may need underpinning to parents, who often are inundated with facts about autism and unaware of simple methods of conveying messages to ASD children. For many parents, social stories or story boards are either processes that happen only in school as part of ‘education’ or they are unaware of them. For others, they may not use social stories unless they are from a book. Seeing a basic hand drawing as a means of communicating can bolster parents’ self-confidence to use social stories effectively and regularly. Some autistic children identify with the story only if a photo of their own face is on the drawing.
Although these lengths may seem onerous and time-consuming, a central template of social stories or visual cues, held on computer, can limit extra work.
3. Pecs/Signage.

Whether you have autistic children in your school or simply early years children, they benefit from clear signage, which is often improved by colour coding. Any signage that you use during the school day should be continued at social gatherings or parties – this gives the child predictability which is so often the root of anxieties and emotional outbursts. In party information, alert parents about how signs and colours are used in school so that they can give continuity at home.
In addition, any visual class reward systems should be continued, such as children’s names on smiley faces, badges or visual boards of house points. Consider having a poster, including pictures and words, of unacceptable behaviours and have this clearly displayed.
For individual autistic children, try to establish before the social gathering a sign, which they can use to show they are becoming distressed such as a simple ‘thumbs down’. With HFA or older children a key word would be less obtrusive.
4. Non-Spectrum children.

One of the most challenging aspects of social events can be the interaction of non-spectrum with autism spectrum children. Even in schools where autistic pupils attend regularly, this can present difficulties. Schools, of course, are far more aware of bullying as an issue. It is, perhaps, not the obvious bullying but the side-lining of pupils that can happen more readily today. In secondary schools, where pupils are observed necessarily less closely, those with HFA are vulnerable to this. Autistic children also need guidance as to how to handle difficult situations that might arise in school. Building self-esteem, supported by learning programs such as ‘Friends for Life’ can empower autistic children to be robust in school, allowing less likelihood of bullying or reducing its impact while increasing its reporting.
5. Activities according to development and age.

It’s tempting to place less academically or socially able pupils with younger children. This would be a mistake. There is ample evidence that autistic children should be placed with their peers, since they learn by observation predominantly. Peers act as role models of appropriate behaviour for their age, which is particularly important as children get older. Issues such as body space and touch can be modelled by same-age peers, as well as social protocol around dining and other activities.
In order to accommodate the range of skills and communication difficulties activities and games should be broad and allow for proprioceptors challenges. It is often a good idea to start a social gathering with a physical activity to reduce anxieties that many autistic children might feel.
Ensure all entertainers are briefed about autistic children, so they can accept ‘odd’ behaviours and modify their performance if necessary prior to the party. Also check that none of the ASD children has an acute fear of a particular colour or costume.
Discos tend to be a challenge even for teens with autism. The difficulty is lack of structure when pupils envisage a sea of time without something specific to do. A vague expectation of dancing is a problem to ASD teens. The idea of ‘chat’ or ‘small talk’ is remote to many autistic teenagers who simply don’t understand conversation as being an exchange of information, when participants take turns, rather than one party (the ASD teen) dominating discussion with their special interest.
The way round this is to structure any such event, perhaps have an ongoing ‘buddy’ system for ASD pupils and be vigilant about what’s happening at the gathering. Another helpful strategy is to allocate a ‘job’ to an autistic pupil, which will enable them to engage with peers without the pressure of verbalising. For older pupils, being the photographer is often a useful role.
NB. Having photographs taken can be extremely distressing for some autistic children. Sensitive ways around this are to have children pose with a piece of work so the focus seems more on the creation not the child, minimise photos or gently remove the child while group photographs are taken.
6. What to do when things go wrong.

Outbursts can seem completely unexpected in autistic children, who don’t communicate upset like non-spectrum pupils. Watch for sweating, heavy breathing, agitation or a pose as if the child were preparing to fight, such as gritted teeth or clenched fists.
Have a quiet room where autistic children can go if the event becomes too overwhelming and identify that this is available on the party information. It is usually unwise to have access to computers in a quiet room because many ASD pupils adore computing and may engineer a need for the quiet room – or you may have an emotional outburst when extricating them!
Refer to the visible list of unacceptable behaviours, if appropriate. Remember that even HFA pupils will find verbalising difficult when they’ve had a physical/emotional outburst, so if possible remove them to the quiet room and give time for them to calm down before attempting to talk through what’s happened.
As soon as possible, return the child to the social gathering.
Conclusions.
Social gatherings and parties in school encourage autistic pupils to engage socially and learn social skills by observation. This can be rare in the outside world, especially if they have had past poor experiences.
Social events and parties at school can encourage friendships or invitations to birthday parties, for example, which expand the autistic child’s social experiences and enable them to develop socially over time. For these children, school is their main social world and their most socially lucrative resource.
Biography:
Kate Reynolds worked in various management roles for the NHS for 18 years, specialising in sexual health. She has two children on the autism spectrum, one with Asperger syndrome, the other with autism disorder (classic/childhood autism) and severe speech delay. She writes books for Jessica Kingsley Publishers and blogs and answers parents’ questions about autism at www.autismagonyaunt.com
Kate would like to acknowledge the help of Anne Callahan, Primary School Teacher, who reviewed this article and added personal insights.
References:
Baird, G. Simonoff, E. Pickles, A et al (2006) ‘Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs Autism Project (SNAP).’ The Lancet 368, 9531, 210-215.
Begeer, S. Quoted in Rudacille, D. (2011) Diagnostic Tests for autism may miss many girls. Simons Foundation Autism Research Initiative https://sfari.org/news-and-opinion/news/2011/diagnostic-tests-for-autism-may-miss-many-girls. Accessed 12 October 2012
Further reading:
Gray, C (2012) ‘Social Stories’ www.thegraycenter.org
Interactive Connections Ltd (2012) ‘The Friends Programme’ www.interactive-connections.co.uk
Reynolds, K.E. (2012) ‘Party Planning for Children and Teens on the Autism Spectrum: How to avoid meltdowns and have fun!’ Jessica Kingsley Publishers, London.

Written For Community Practitioner Journal, UK

Autism Spectrum Disorders in Girls and Women: An Update
Kate E. Reynolds PGDHEd, PGDCouns. BSc (Hons) Soc Pol, RGN,
Author & writer on health issues
Correspondence:
kate_dorrie_reynolds@yahoo.com
Competing interests:
The author has a nine year old son whose has autism disorder at the more extreme end of the autism spectrum. The author is completing a second book about autism for Jessica Kingsley Publishing.
Introduction
Autism Spectrum Disorders (ASDs) are a range of conditions which are identified by the presence of the Triad of Impairments (Wing and Gould, 1979) The US Diagnostic and Statistical Manual and the International Classification of Diseases use the term Pervasive Developmental Disorders (PDDs) to describe a similar range of conditions, these being
Autism disorder/classic autism/childhood autism/typical autism
Asperger syndrome
Rett syndrome
Childhood disintegrative disorder
Pervasive developmental disorder not otherwise specified (PDD-NOS), which includes atypical autism when symptoms do not completely fit into a diagnosis of autism disorder
ASDs are neurological, life-long, developmental disorders. The level of disability associated with ASDs can vary from the more subtle presentations of Asperger syndrome to severe learning disabilities associated with autism disorder and more debilitating physical difficulties of Rett syndrome. However, Asperger syndrome (AS) and higher functioning autism (HFA) *are linked to a high degree of mental health issues.*The difference being that there is a deficit in language in HFA which is not present in Asperger syndrome, but both conditions have a pre-requisite of a minimum IQ of 65.
The most common disorders that community practitioners will experience are autism disorder and Asperger syndrome. This original research focused on male patients, a bias that continued in subsequent studies in this area.
Incidence
Research suggests that around 1% of the UK’s childhood population has a level of ASD, or one in 100 children on the autism spectrum (Baird et al, 2006) Among the general population approximately 500 000 people have autism (NAS, 2010)
Current research indicates more males than females are on the autism spectrum, averaging 4:1 in autism disorder (Kanner, 1943) and Asperger Syndrome (Ehlers and Gillberg, 1993.) Data have demonstrated a disparity between the more subtle presentations of Asperger Syndrome/higher functioning autism, in which the ratio was 15:1 male to female incidence, compared to autism disorder and associated learning difficulties at 2:1 male to female (Wing, 1981.) Wing’s work suggested that females might be less prone to subtler forms of autism spectrum disorders and more prevalent in more overt forms.
There is evidence to support males being more likely to have ASDs than females (aside from Rett Syndrome which is predominantly a female condition.) Rimland was able to demonstrate that autism is an organic condition, to which boys are more susceptible (Rimland, 1964.) Genetic studies have shown that girls have a level of protection from rare genetic variant that appear to cause autism in boys. They demonstrate also that females have large deletions and duplications of DNA with more severe symptoms. Some research proposes that ASDs are a form of “extreme male brain” or an exaggeration of male traits, caused by exposure to abnormally high testosterone levels in the uterus during pregnancy (Ingudomnukul E et al. 2007)
For a clearer explanation of these findings we need to examine the inception of research into ASDs by Kanner and Asperger (Asperger, 1944) in the 1940s, which focused solely on boys. As a result, reported symptoms, cataloguing of ASDs and diagnostic tools became based on manifestations of these disorders in male patients (Kopp and Gillberg, 1992) leading to fewer females being diagnosed and therefore included in research.
It now seems that girls/women present differently to their male counterparts and their symptoms are more subtle unless they are at the lower functioning end of the spectrum. Boys generally have more disruptive behaviours than girls, which might explain girls’ absence from statistics among higher functioning/Asperger patients. In addition, females have better social and linguistic skills in their early development, whereas males have more honed visuospacial skills. Girls also are more able to copy behaviours and this disguises their deficits (Attwood, 2007.)
Psychologist, Baron-Cohen produced scientific evidence to show that the male and female brains are different. He proposed that autism spectrum disorders were an extreme of the male brain, it being highly systems-oriented (Baron-Cohen, 2004.) This influential work reinforced conventional thinking about ASDs, meaning that girls, who present with a level of empathy (viewed as a female trait) may be excluded from an ASD diagnosis.
One study found that impairments to social and communication were more obvious in the early years in boys than in girls but this pattern was reversed in adolescence and adulthood (McLennan et al, 1993.) Researchers suggested that in adolescent and older women, activities with peers involved high levels of social interests and communication, whereas males had a greater emphasis on other social choices, such as spectator sports, which required less interaction and social skills.
Diagnostic tools
In order to categorise behaviours as being within the triad of impairments, Lord et al developed the Autism Diagnostic Observational Schedule, which became widely available in 2001 (Lord et al, 1989). This diagnostic tool consists of structured interviews with patients (or their primary carer) and semi-structured tasks which involve interaction between the practitioner and the patient. There are specific observations of behaviour, which fall into predetermined categories, which in turn produce quantitative scores for analysis.
In addition to this tool, there is the Autism Diagnostic Interview-Revised (ADI-R) structured interview. This diagnostic instrument incorporates the patient’s entire developmental history and relies on input by primary carers (Lord et al, 1989) However it is becoming clear presentations in females with Asperger syndrome or HFA are different to those in males (Kopp and Gillberg, 2011) so girls are either diagnosed late or missed completely.
Diagnosis
Diagnosis is based on the Triad of Impairments, which was developed according to available research of male phenotypes. For a diagnosis of an ASD, the patient must have symptoms in each of the three areas of impairment 1. social interaction, 2. social communication 3. social imagination.
The most subtle and missed gender differences occur in Asperger/HFA diagnoses, when the patient must meet all six areas defined by the DSM-IV description of Asperger Syndrome (A-F below) (DSM-IV 1994)
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairment in the use of multiple nonverbal behaviours, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(4) lack of social or emotional reciprocity
B. Restricted, repetitive, and stereotyped patterns of behaviour, interests, and activities, as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.
Existing diagnostic tools do not address the following gender issues:
Questions are not specific enough to examine girls’ unusual or atypical play habits (Huerta, 2011)
The presence of repetitive behaviours and particular special interests are considered an essential part of a diagnosis of autism spectrum disorder. This is male phenotype effectively misses females. (Attwood, 1999)
Definitions as laid out under the International Classification Systems are narrow and exclusive of female manifestations (Ashton-Smith 2011 interview)
Asperger syndrome was not included on the autism spectrum until the diagnostic criteria were re-evaluated and expanded in the DSM-IV in 1994 (Begeer, 2011) but these still do not incorporate many female symptoms
Using conventional diagnostic tools, girls have greater communication abilities, such as pointing and following with gaze (Huerta, 2011)
How females present differently to males:
Research into Asperger syndrome has found that both genders experienced difficulties in visual/fine motor skills, such as poor handwriting and co-ordination in sports.
Impairment of social interaction
Unlike boys, girls appear to be motivated to engage socially, but have a history of lacking success in creating and maintaining friendships. (Huerta, 2011)
Girls tend to gravitate towards older girls, on whom they become socially dependent for “protection”
Girls are often socially immature, playing with younger girls, who are not so challenging than peers and allow ASD girls to dominate the play. (Holtman et al, 2007).
Impairment of social communication
Boys engage in disruptive behaviour to obtain objects, whereas girls are disruptive, sometimes being persistently “unwell” for attention.
Girls tend to avoid daily demands by passively ignoring them, whereas boys become disruptive.
Girls may be more able to concentrate, whereas boys are more distracted
Girls seem to have greater difficulty in communication, regardless of cognitive ability
Socially, girls tend to observe and follow their peers, instead of initiating social contact
Girls need to learn to make “small talk” which they find meaningless.
Girls may find the concept of social hierarchy difficult, so they cannot appropriately communicate with people of higher status, such as teachers.
Girls become socially isolated, teased/bullied by peers
Impairment of social imagination
Parents may be concerned about their daughter’s development but cannot specify the problem. Girls may present with:
Immature, impulsive and unusual behaviours (Holtman et al, 2007)
Declining or poor grades at school
Being regarded non-specifically as “odd” by teachers
Disorganisation
Lack of interest and passive responses to classroom learning
Poor empathic skills and lack of social understanding
Repetitive questioning
An intense interest in imaginative play – but it is obsessive, often involving an inability to discern between reality and fantasy. Girls may believe they can become imaginary characters. Because their interests tend to be the same as their peers – animals, mermaids, popular literature, celebrities - girls on the autism spectrum may not seem so different. The key is to examine the intensity and quality of their fascinations. (Knickmeyer et al, 2008)
Links to mental health issues:
Anorexia nervosa
This has been described as “female Aspergers” since around one fifth of girls with anorexia have features that are specific to the autism spectrum. Additionally 20-30% of these patients exhibit rigid patterns of behaviour an thought and are perfectionists (Treasure, 2010 ) Part of the reason for ASD girls becoming anorexic is that they tend to be driven by systems and rules; the rules surrounding eating food therefore alluring to them.
Clinical depression
The incidence of clinical depression associated with Aspergers and HFA is well documented and self-harming behaviours are common (Attwood, 1998.) Females appear to be more prone to sleep disturbances, depression and anxiety than males (Huerta, 2011) It is only during adolescence that the social deficits in girls become more obvious, they become marginalised, can be bullied and/or socially withdraw (Holtman et al, 2007). They do not become aggressive, but shy and depressed by feeling on the periphery (Ashton-Smith, 2011)
Non-epileptic seizures
According to documented and anecdotal evidence, non-epileptic seizures occur with Aspergers and HFA. They are characterised by a sudden shut down in conscious awareness, sometimes accompanied by twitching but the patient will not harm themselves during the seizure. In Asperger syndrome and HFA, they are due to sensory overload, usually noises, crowded or unpredictable situations and are not conscious actions. Around 75% of cases of non-epileptic episodes are women, usually presenting in their late teens or twenties (Mellors, 2005.)
Differential diagnosis
Research has found that females who later were identified as on the autism spectrum, were often initially diagnosed with learning disorders, obsessive compulsive disorders, schizophrenia, personality or eating disorders (Taylor-Rivet and Matson, 2011.) This may be related to social stereotypes of women and lack of awareness of how ASDs can present in females. A woman who displays features associated with being on the autism spectrum, such as lack of emotional attachment and social awareness, may be assumed to be odd or cold, whereas men behaving this way may be construed as just being part of their gender behaviours. (Faherty, 2002.)
Future:
More research is needed to adequately describe and manage autistic characteristics in girls/women (Hartley, 2009) and heighten awareness among professionals, especially community practitioners who are key to early detection and referral for diagnosis.
Diagnostic criteria need to be refined to take account of gender differences. A simple checklist cannot sufficiently account for the full range of symptoms of females. Complete assessment requires detailed evaluation of various aspects of the patient and takes time in order to produce a full profile.
Diagnostic tools, such as Autism Diagnostic Interview (ADI), Autism Diagnostic Observational Schedule (ADOS) and pre-linguistic ADOS need adapting.
Developing assessment criteria could include:
Further assessment when a girl’s scores on conventional autism screening do not quite reach the level for diagnosis
Comparisons of the girl’s communication and social skills with neurotypical girls of that age and similar cognitive ability
Examination of social and communication difficulties in the absence of significant disruptive behaviours
Observing how the girl manages in the unstructured world with peers, not just an artificial situation with a professional
Examine existing friendships carefully for social dependence or immaturity
That ASDs in girls may become apparent in adolescence through disruptive behaviours
Some suggest that females have greater social difficulties than males, but research is inconsistent and at present it is only clear that girls and boys have different developmental profiles in terms of communication and social difficulties. (Williams et al, 2008)
Research and debate will create a climate where autistic females can be identified. The earlier the diagnosis the more support can be given, especially in the school environment, and the better the prognosis. Community practitioners are in a key position to identify and refer girls for specialist diagnosis.
References
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders Washington D.C American Psychiatric Association
Asperger H (1944). Die Autistischen Psychopathen im Kindesalter Autistic psychopats in childhood (in German). Archiv für psychiatrie und nervenkrankheiten 117: 76–136.
Attwood, T (1998) Asperger’s Syndrome: A Guide for Parents and Professionals London, Jessica Kingsley Publishing
Baird G, Simonoff E, Pickles A et al. (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 368(9531): 210-5.
Baron-Cohen, S (2004) The essential difference: Male and female brains and the truth about autism. New York: Perseus Books Group.
Begeer, S. Quoted in Rudacille, D. (2011) Diagnostic Tests for autism may miss many girls. Simons Foundation Autism Research Initiative https://sfari.org/news-and-opinion/news/2011/diagnostic-tests-for-autism-may-miss-many-girls Accessed 22-03-12
Ehlers S, Gillberg C. (1993) The epidemiology of Asperger syndrome: a total population study.J Child Psychol Psyc 34(8): 1327-50.
Faherty, C (2002) Asperger’s syndrome in women: A Different set of challenges? Autism Asperger’s Digest See: www.autismtoday.com/articles/Aspergers_in_Women.htm
Gould, J and Ashton-Smith, J. (2011) Missed Diagnosis or Misdiagnosis? Girls and Women on the autism spectrum. Good Autism Practice, May 2011
Hartley, S. L and Sikora, D. M (2009) Sex Differences in Autsim Spectrum Disorder: And Examination of Developmental Functioning, Autistic Symptoms and Coexisting Behaviour Problems in Toddlers Journal of Autism and Developmental Disorders, 39, 1715-1722
Holtman, M Bolte, S and Poustka, F (2007) Autism Spectrum Disorders: Sex Differences in Autistic Behaviours Domains and Coexisting Psychopathology Developmental and Child Neurology, 49, 361-366
Huerta, M. Quoted in Rudacille, D. (2011) Diagnostic Tests for autism may miss many girls. Simons Foundation Autism Research Initiative https://sfari.org/news-and-opinion/news/2011/diagnostic-tests-for-autism-may-miss-many-girls Accessed 22-03-12
Ingudomnukul, E, Baron-Cohen, S, Wheelwright, S et al (2007) Elevated rates of testosterone-related disorders in women with autism spectrum conditions Hormones and Behavior 51(5) 597-604
Kanner L. (1943) Autistic disturbances of affective contact. Nervous Child 2: 217-50.
Knickmeyer, R.C., Wheelwright, S., & Baron-Cohen, S. (2008) Gender-typical play: testing for masculinization/ defeminization in girls with an autism spectrum condition. Journal of Autism and Developmental Disorders. 38(6): 1028-1035.
Lord, C Rutter, M Goode, S et al (1989) Autism Diagnostic Observation Schedule: A Standardized Observation of Communicative and Social Behaviour Journal of Autism and Developmental Disorders, 19 (2) 185-212
McLennan, J. D Lord, C and Schopler, E (1993) Sex Differences in Higher Functioning People with Autism Journal of Autism and Developmental Disorders, 23, 217-227
Mellors, J.D.C (2005) The Approach to Patients with Non-Epileptic Seizures Postgraduate Medical Journal 81,(958) 498-504
National Autistic Society (NAS). (2010) Facts and statistics about autism. See: www.autism.org.uk/ about-autism/some-facts-and-statistics (accessed 10 June 2011).
Rimland B. (1964) Infantile autism: the syndrome and its implications for a neural theory of behaviour. New York: Appleton-Century-Crofts.
Rivet, T. T and Matson, J. L (2011) Review of Gender Differences in Core Symptomatology in Autism Spectrum Disorders Research in Autism Spectrum Disorders. 5 (3) 957-976
Treasure, J. (2010) quoted in Laurance, J. Why Autism is different for Girls. The Independent 23 February 2010
Williams, J, Allison, C, Scott, F et al (2008) The Childhood Autism Spectrum Test: Sex Differences Journal of Autism and Developmental Disorders, 38, 1731-1739
Wing L, Gould J. (1979) Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism and Developmental Disorders 9(1): 11-29.
Wing L. (1981) Sex ratios in early childhood autism and related conditions. Psychiatry Research 5(2): 129-37.

KEY POINTS
Although research shows more males than females are on the autism spectrum, the ratios for higher functioning autism and Aspergers appear inaccurate
Diagnostic tools and methods effectively exclude many of the presentations of autism spectrum disorders in females
More research and revised diagnostic methods are needed to redress this imbalance and ensure females on the autism spectrum are identified early, when therapies will have the optimum effect

'Women and Girls on the Autism Spectrum' for Special Education Advisor. August 8 2012

UPDATE ON AUTISM SPECTRUM DISORDERS IN CHILDHOOD
KATE E. REYNOLDS
RGN, BSc.Soc.Pol, PGDipHEd, PGDipCouns.

DEFINITION
Autism Spectrum Disorders (ASDs) are a range of conditions, identified by the presence of the triad of impairments (see Diagnosis below). A similar range of conditions are also called Pervasive Developmental Disorders (PDDs) a term used by the International Classification of Diseases and the United States’ Diagnostic and Statistical Manual. These conditions are:

Autism disorder/classic autism/childhood autism/typical autism
Asperger Syndrome
Rett Syndrome
Childhood Disintegrative Disorder (CDD)
Pervasive Developmental Disorder not otherwise specified (PDD-NOS), including atypical autism (where symptoms do not fit wholly into an autism disorder diagnosis).

ASDs are neurological developmental disorders which are life-long. The extent of disability is variable. Typically, ASDs develop in the first three years of life and are characterised by difficulties with non-verbal and verbal communications, social interactions and imaginative/play activities.
However, autism disorder is often associated with more severe, complex conditions, such as genetic disorders where autism is only one of several presenting features of that patient. Community practitioners generally will work with patients/families affected by the most common ASDs of autism disorder or Asperger syndrome.

INCIDENCE
There is no central register of people with ASDs, so projections are based on epidemiological studies in the United Kingdom (UK). Figures produced in 2009 estimate the population of the UK at 61.8 million (1) with over 500 000 having autism (2). Research in 2006 suggested over 1:100 children is on the autism spectrum. In practical terms, this means around 1% of the childhood population of the UK has a level of ASD (3).
The numbers appear to have risen dramatically in the past 20 years, but the definition has broadened considerably since autism was identified over 50 years ago by Leo Kanner. Research often refers to ‘strict’ diagnoses of ASD, meaning autism disorder/Asperger syndrome, as opposed to the wider umbrella of other ASDs. Greater awareness of autism also could account for an increase in diagnosed cases.

CAUSES
There is no known single cause of ASDs, although it is widely accepted that around 40% of cases have an underlying genetic predisposition. Research published in 2006 found a strong connection between autism disorder and chromosome 7 as well as less well-defined connections with other chromosomes (4). Although scientific research into specific genes continues, it is clear that autism can be inherited from male or female lines (5).
Post mortems have demonstrated abnormal levels of neurotransmitters, such as serotonin and abnormalities in the cerebellum, frontal lobes and brain stem – all suggesting a biological cause. Other factors may include viruses, metabolic and immune disorders during pregnancy and perinatal anoxia.
Research by Paul Shattock at Sunderland University indicated that autism disorder may be linked to the incorrect metabolism of casein and gluten in the diet (6). Although this work has been criticised for lacking scientific rigour, there is much anecdotal evidence that elimination diets have a positive impact on symptoms of autism (7).
Dr Andrew Wakefield’s assertion that the Measles, Mumps and Rubella (MMR) vaccination directly caused autism has been quashed (8) but it is still impacting on uptake of the MMR. The fact that symptoms of ASD present around the time that children have the MMR, does not mean a causal link between the two events and none was proven.

DIAGNOSIS
A common experience among primary carers is that health visitors do not accept that the child is ‘different.’ A frequent explanation for a boy’s lack of speech is that males develop physical skills more readily than girls, so are slower at verbalising. The focus can become the ‘anxious’ carer, rather than the child.
A difficulty for health visitors is that their role has changed over time, so they less frequently experience ‘normally’ developing children, which would give them a yardstick as to what is not typical development of communication. If a parent is describing odd behaviours in their child, this should alert the practitioner to a possible ASD.
At present, diagnosis is still made on observed behaviours. There is no diagnostic tool, although researchers in London have made strides using MRI imagery to pinpoint features specific to those on the autism spectrum (9).
Diagnosis depends on the patient presenting with symptoms from each of the so-called ‘Triad of Impairments’ these being:

  Impairment of social interaction
Lack of eye contact/covering their head or eyes persistently
Reluctance to cuddle/be appropriately tactile
Inappropriate responses to social interactions, such as laughing at others’ injuries
Aloofness or indifference to others
No spontaneous attempts to make social contact
Lack of empathy with others
Following their own ‘agenda’ of (often seemingly odd) activities

  Impairment of social communication
Delay in speech, with no underlying hearing deficit
Does not respond to his/her name
Echoing words or phrases
Generally preferring to be alone
Difficulty interacting with others
Difficulty expressing wants or needs – may use gestures
Not understanding the spoken word as a means of conveying/gaining information
Inability to interpret body language or the nuances of the spoken word
A literal understanding of speech

  Impairment of social imagination
Concentration on the minutia, not the overall picture
Inappropriate attachment to objects
Prolonged repetitive behaviours
Spinning themselves or objects
Lining up objects
Insistence on (often elaborate) routines
Inability to play with toys with any imagination, no mimicking parental behaviours such as vacuuming
Displaying tight, repetitive interests, often with vast knowledge of these

OTHER SIGNS
Over or under-sensitivity to pain
Toe-walking – people with ASD describe feeling pain if they place the entire foot on the floor
No fear of danger
Aggression/Tantrums for no apparent reason
Self-injurious behaviours, such as head banging/scratching
Hyperactivity
Sleep disturbances
Repetitive, focused behaviours have a purpose, in that they protect the child from what can be a bewildering world, by giving comforting predictability. Distracting the child, blocking or removing the items of focus can cause great distress.
Many people demonstrate autistic traits – such as a need for routine, lack of empathy – but cannot be described as on the autism spectrum, unless they fit the triad outlined above.

EARLY SIGNS
Autism disorder is difficult to identify, but is often apparent, in the first two years of life. The following signs are not conclusive, but should be areas for concern for practitioners involved with young children. Make a referral to a specialist or continue observation if the child:
Does not coo, point or gesture by 12 months
Does not say single words by 16 months
Does not say two or more words by 24 months
Has lost some social skills or language
Has a fascination with bright/shiny objects and no apparent interest in people (10)
More subtle signs can be missed, so ‘oddness’ or ‘eccentricities’ in a child should be closely examined. The critical point for practitioners is that, the earlier an ASD is diagnosed, the sooner intervention can start and the greater the life chances of the individual.

THERAPIES
Due consideration needs to be given to the primary carer, without whom the whole basis of home care would collapse. Medically, patients can be prescribed Melatonin or a sedative to enable sleep for the person with ASD and the carer, whose exhaustion levels may be high, given years of disturbed sleep.
Around one in three people with ASD will experience one to two epileptic seizures by adulthood, which are treated in line with medical protocols. Other medical treatments will be according to presenting illness.
Much of the input is in terms of education or developing language. Speech and language therapists tend to assess and prescribe follow-up therapy, to be supported by generic staff in educational establishments. A common approach uses the Picture Exchange Communication System (PECS) which exploits the highly visual nature of many people with ASD. Each card shows an object and its name printed underneath. The child select what they want, gives it to the carer who repeat the word on the card, so the child makes the specific link between the visual appearance of the object and the name – a link not made automatically in autism.
Makaton signing may be used to enable a level of communication, where there is severe speech delay. With Makaton, the signer verbalises simultaneously with signing.
As a community practitioner, there are several ways in which you can enable primary carers to support the development of language. This is useful, when there may be a long waiting list for a Speech and Language therapist to assess:
Always have the child facing the carer when trying to communicate
Hold an object up to the side of the carer’s mouth, as the carer says the name of the object
Use visual aids – simple drawings will do – to explain what the child is going to do or what is going to happen. Many children with ASD can only start by having one or two drawings.
Use mirrors to help the carer enunciate clearly and the child copy exactly. This is also useful for educating about facial expressions and how these show feelings – often a deficit in people with ASD

SUPPORT
Critical to the approach of community staff is to understand that carers will undergo a bereavement period, which may be prolonged. Even the most basic of hopes for their child - having friendships, children, and employment – may be dashed.
Couples may attempt to blame each other for any genetic links. Aside from the destructive aspects of this behaviour, scientific research is far from conclusive. Contrary to the popular concept, autism is not necessarily passed down the male line. Professional counselling may enable parents to adjust to the diagnosis.
There will be uncertainty about the child’s future. The medical profession cannot identify a linear pattern to the progression of autism. The child may develop well in some areas, or not at all.
Referral to a social worker may facilitate respite services, but in today’s climate of austerity these are likely to be very limited. Even social workers who specialise in disability have tight resources and focus primarily on acute cases of families in distress, so community practitioners in health services should be aware of local support agencies. Local services, such as free nappies for disabled children, can be a great support; some autistic children need nappies for life, others may be several years behind their peers.

Recent changes to government policy were outlined in the Autism Act 2009 and rolled out in an adult autism strategy paper for England last year. Of particular note to community practitioners are the following key points:
Improvement to training for frontline practitioners
Diagnosis to be facilitated
Services to be planned and commissioned using input from people with ASDs and their families
A recommendation to create local autism teams

CONCLUSIONS
Community practitioners are in a key position to identify autism spectrum disorder at an early stage, when therapies will have optimum effect. Take seriously a primary carer who is concerned about odd behaviours in their child. Make an early referral for Speech and Language therapy in conjunction with referral for hearing tests to exclude hearing deficits as a cause of lack of speech or lack of response to speech. Be aware of local and national support, for what is becoming an increasing issue for families.

CONTACTS
Carers Allowance Helpline: 0845 608 4321 Carers Allowance is a benefit for those providing 35 hours’ care per week to someone under the age of 65. It is means-tested, according to the earnings of the carer.

Cerebra: www.cerebra.org.uk A UK based organisation which can fund speech and language therapy on a 1:1 basis, short-term.
Parent support line: 0845 328 1159

Disability Living Allowance (DLA): www.direct.gov.uk This Government site explains the non-means-tested benefit, DLA.
DLA Helpline: 08457 123 456

Family Fund: www.familyfund.org.uk Depending on household income, this UK based organisation offers grants for a range of items to support disabled children, such as ‘white’ goods, buggies and harnesses. It can fund holidays.
Helpline: 0845 130 4542

IPSEA – Independent Parental Special Educational Advice. www.ipsea.org.uk
General helpline: 0800 018 4016
Tribunal helpline: 0845 602 9579
A UK based organisation that gives free advice and support through the process of getting a Statement of Special Educational Needs for education.

National Autistic Society: www.autism.org.uk This support group has local branches and vast information about autism, from diagnosis onwards.
NAS Helpline: 0845 070 4004
REFERENCES
Office for National Statistics Population Estimates: UK Population Grows to 68.1 Million www.statistics.gov.uk Mid-2009
National Autistic Society Facts and Statistics about Autism www.autism.org.uk/about-autism/some-facts-and-statistics
Baird, G. et al Prevalence of Disorders of the Autism Spectrum in a Population Cohort of Children in South Thames: the Special Needs and Autism Project (SNAP). The Lancet, 2006, Vol. 368 Issue 9531 P 210-215
Schellenberg G.D. et al Evidence for Multiple Loci from a Genome Scan of Autism Kindreds. Molecular Psychiatry, 2006, Vol. 11 P 1049-1060
Exploring Autism Frequently Asked Questions Exploring Autism: A Look at the Genetics of Autism. www.exploringautism.org
Shattock, P. et al How Could a Gluten and Casein-free diet ameliorate symptoms associated with autism spectrum conditions? Autism Insights, 2010, Vol 2 P 39-53
Matthews, J. Diet for Autism: how and why it helps. The Autism File, 2008, Vol 28 P 80-84
Godlee, F. Smith, J & Marcovitch, H. Wakefield’s Article Linking MMR Vaccine and Autism was Fraudulent. BMJ 2011, Vol. 342 P 7452
Ecker, C. et al Describing the Brain in Autism in Five Dimensions – Magnetic Resonance Imaging – Assisted Diagnosis of Autism Spectrum Disorder Using a Multiparameter Classification Approach The Journal of Neuroscience 2010 Vol 30 P 10612-10623
Wing, L. Autistic Children London. Constable. 1980

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