The Importance of Identifying Asperger’s Syndrome / High Functioning Autism in Adults

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“Growing up with undiagnosed Asperger’s Syndrome can be traumatic for many individuals.”

Many adults with undiagnosed Asperger’s Syndrome are usually keenly aware that they do not ‘fit in’, yet are unable to either express or understand exactly what it is that makes them feel differently to others.

For this reason many undiagnosed adults develop negative perceptions of themselves as “weird”, “crazy,” or “broken.”

Despite these negative self-images, many undiagnosed adults are able to hide their difficulties by developing coping mechanisms, such as mirroring or mimicking those around them in social settings.

They are therefore seen as being able to engage in the everyday routines of life such as working, having relationships, getting married and having children.

Yet though they have the ability to apply such coping mechanisms, many individuals with undiagnosed AS, are never able to shake off the underlying awareness of themselves as inherently ‘different’ to those around them.

Ironically, the very skill sets that adults with undiagnosed moderate to mild Asperger’s apply, in order to try and ‘fit in,’ have meant that they have flown “under the diagnostic radar”.

Other individuals with undiagnosed AS, who have not learnt such skill sets, may show greater signs of having social communication difficulties.

This can make them more susceptible to situations such as chronic unemployment and social isolation due to the fact that they may be mistakenly perceived as people who are deliberately anti-social, argumentative, objectionable or aloof loners who crave only their own company.

In reality, these people may be individuals who are displaying the lack of social skills required to communicate and act appropriately, that make up the characteristics or traits commonly described in Asperger’s Syndrome.

It is now well established that individual with AS may display varying degrees of some or all of the following characteristics:

A lack of social skills which manifest in inappropriate social approaches, responses or social awkwardness.

Difficulty recognizing the facial expressions or emotions of others.

Difficulties in considering or understanding others’ viewpoints.

Limited interest in friendships


Difficulties with being able to communicate their ideas, thoughts and emotions.

Difficulties in comprehending and following social reasoning and adhering to the status quo.

Difficulty with transitions and changes.

Hold a strong need for routines.

Narrow range of interests or idiosyncratic special interests.

Be overly sensitive to sounds, tastes, smells and sights.

Have motor coordination difficulties.

Experience difficulty managing their own negative feelings, especially anxiety, anger and depression

Adults with undiagnosed AS are susceptible to experiencing high degrees of stress, frustration, confusion and anxiety due to their awareness that they do not ]fit in’.

These additional difficulties have often been misinterpreted, misdiagnosed, misunderstood and mistreated, especially when their underlying AS is undiagnosed or not adequately understood.

Some of the most common additional difficulties include:

Angry outbursts (physical or verbal aggression, verbally threatening behavior)

Agitation and restlessness

Increase in obsessive or repetitive activities, thoughts, or speech

Low mood or depression

Apathy and inactivity

Unfortunately many professionals who are unfamiliar with AS often only focus on the surface symptoms and behaviors that an individual with undiagnosed AS may display.

This leaves individuals with undiagnosed AS at risk of being incorrectly diagnosed with conditions such as:

Personality Disorders

Psychosis

Bipolar Disorder

Obsessive Compulsive Disorder

Mood disorder

It is therefore essential, that in order to prevent individuals with undiagnosed Asperger’s Syndrome from being incorrectly diagnosed with conditions, treatment plans and medications that will not help them, that a thorough Autism assessment must be applied to adults who fall within this criteria.

A proper diagnosis of AS can better help adults put their difficulties into perspective and enable them to understand the underlying reasons for their lifelong struggles.

Correct diagnosis and effective treatment can help improve self-esteem, work performance and skills, educational attainment and social competencies.

More importantly a correct diagnosis can trigger both a journey of self-discovery and a healing process for the individuals concerned. 

 

Women and Girls on the Autism Spectrum

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“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