“The Extreme Male Brain?” Questioning The Gendering of Autism.

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“In 2005, autism researcher Simon Baron-Cohen opened a New York Times article with the following statement: “By studying the differences between male and female brains, we can generate significant insights into the mystery of autism” (Baron-Cohen). What makes this statement possible, rhetorically, is a process of gendering that has made autism spectrum disorder (ASD) into “The Male Condition”—the title of Baron-Cohen’s piece.”

“Autism is an example of what Judy Segal calls a rhetorical disorder: in the absence of clear biological markers for autism, “discourse fills the space that certainty in medicine leaves unoccupied.”

“in 2010 the APA released working notes for the DSM-V, which offered new criteria for autism and placed Asperger’s syndrome (heretofore a separate disorder) within the umbrella category of ASD. Such a shift would be fundamentally rhetorical, in that it is enacted through language, persuading practitioners to categorize individuals in a new way.”

“Autism is shaped in part by “social meanings, symbols, and stigmas” attached to it. What makes this process unique, in the case of autism, is that these social meanings do not merely demarcate the “normal” (or neurotypical) from the “abnormal” (or neurodiverse); instead, they also differentiate between men and women, in such a manner that the “male condition” is pathologized alongside the autistic condition.

“ In the case of the EMB theory, this commonality stems from the fact that more boys than girls receive autism diagnoses, by a ratio of 4 to 1. These statistical facts, though, are extended to the disorder itself, where maleness is applied to the brains of individuals with autism. In the process, researchers espousing this theory construct a scale, drawing on the rhetorical figure of incrementum, or scale, which positions women, men, and people with autism along a continuum according to the degree to which they possess some quantified trait.”

“An incrementum is simply a scale, but one that can be used for rhetorical purposes. For instance, if we claim that men tend to be heavier than women, who tend to be heavier than children, we have constructed an incrementum, ordering those three groups according to weight. This claim might seem noncontroversial, but imagine constructing a scale in which we measure intelligence, instead, and order individuals according to sex. That type of scale can support a range of unsavory arguments for policies of all sorts, and would be fundamentally rhetorical both in its construction and its use.”

“Sex and gender offer readily available lenses for understanding autism because they are “present” and by referencing culturally specific notions of sex and gender, researchers make those elements hyper present, and, in the process, obscure others.”

“Late twentieth-century rhetorics of technology, gender, and the service economy make it possible to order individuals along new scales, including technological ability and emotional intelligence.”

“ These scales have shaped scientific understandings of autism in ways that direct the attention of researchers to some aspects and deflect attention away from other important issues, including alternative scientific theories, the interests of girls and women with autism, and the issues deemed most important by autistic people themselves.”

This article consists of excerpts from an academic paper written by J. Jack and published in 2011.

 

ASD Diagnosis: the process for adults

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This information is about the process of getting a diagnosis of an autism spectrum disorder. You can find more information about the autism spectrum at www.autism.org.uk/aboutasds

“Getting a diagnosis of autism, or an autism spectrum disorder (ASD), can be a really positive thing. A lot of people say their diagnosis has helped them to understand why they have difficulties with some things and why they are especially good at some things.

Having a diagnosis also means you can get easier access to support and benefits. However, the process of getting a diagnosis may not be easy. This guide will help you present your case to your GP and explain why having a diagnosis could be helpful for you.

Terminology

You may receive a diagnosis of autism, autism spectrum disorder (ASD), pervasive developmental disorder – not otherwise specified (PDD-NOS), atypical autism, Asperger syndrome or another related condition. These conditions are collectively called the autism spectrum. We use the term autism to cover all these conditions, and use the term Asperger syndrome to include all forms of high-functioning autism.

Ways to bring up the subject with your doctor

The typical route to getting diagnosed is to visit your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism. If you are already seeing a specialist for other reasons (eg a psychologist if you suffer from depression) you might prefer to ask that specialist for a referral instead.

Make sure your diagnosis is the only thing you are seeing your doctor about. If you try and mention it during a consultation about another subject, the doctor may not address it fully. A good way to mention it is to say you have been reading about autism and/or you have been in touch with The National Autistic Society. You can then explain why this is relevant to you.

 

Three main areas of difficulty

Autism is characterised by three main areas of difficulty. People with autism are affected in some way in each of these three areas, but no one person will have all of the traits listed. The autism spectrum is very broad and two people on the spectrum may be very different.

Communication

People with autism sometimes find it difficult to express themselves emotionally and socially. For example, they may:

  • have difficulty understanding gestures, facial expressions or tone of voice
  • have difficulty knowing when to start or end a conversation and choosing topics to talk about 
  • use complex words and phrases but may not fully understand what they mean
  • be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm. For example, a person with autism may be confused by the phrase ‘That’s cool’ when people use it to say something is good.

 

Social interaction

Lots of people with autism want to be sociable but have difficulty with initiating and sustaining social relationships, which can make them very anxious. People with the condition may:

  • struggle to make and maintain friendships
  • not understand the unwritten ‘social rules’ that most of us pick up without thinking. For example, they may stand too close to another person, or start an inappropriate topic of conversation
  • find other people unpredictable and confusing
  • become withdrawn and seem uninterested in other people, appearing almost aloof
  • behave in what may seem an inappropriate manner.

Social imagination

People with autism can be imaginative in the conventional use of the word. For example, many are accomplished writers, artists and musicians. But people with autism can have difficulty with social imagination. This can include:

  • imagining alternative outcomes to situations and finding it hard to predict what will happen next
  • understanding or interpreting other people’s thoughts, feelings or actions. The subtle messages that are put across by facial expression and body language are often missed
  • having a limited range of imaginative activities, which can be pursued rigidly and repetitively, eg lining up toys or collecting and organising things related to his or her interest.

 

Other characteristics of autism

As well as the three main areas of difficulty, people with autism usually have sensory difficulties and often have a love of routines and special interests.

Sensory difficulties

These can occur in one or all of the senses (sight, sound, smell, touch, or taste). The degree of difficulty varies from one individual to another. Most commonly, an individual’s senses are either intensified (over-sensitive) or underdeveloped (under-sensitive). For example, bright lights, loud noises, overpowering smells, particular food textures and the feeling of certain materials can be a cause of anxiety and pain for people with autism.

People with sensory sensitivity may also find it harder to use their body awareness system. This system tells us where our bodies are, so for those with reduced body awareness, it can be harder to navigate rooms avoiding obstructions, stand at an appropriate distance from other people and carry out ‘fine motor’ tasks such as tying shoelaces. Some people with autism may rock or spin to help with balance and posture or to help them deal with stress.

Love of routines

To try and make the world less confusing, people with autism may have rules and rituals (ways of doing things) which they insist upon. Young children, for example, may insist on always walking the same way to school. In class, they may get upset if there is a sudden change to the timetable. People with autism often prefer to order their day to a set pattern. For example, if they work set hours, an unexpected delay to their journey to or from work can make them anxious or upset.

Special interests

People with autism may develop an intense, sometimes obsessive, interest in a hobby or collecting. Sometimes these interests are lifelong; in other cases, one interest is replaced by an unconnected interest. For example, a person with autism may focus on learning all there is to know about trains or computers. Some are exceptionally knowledgeable in their chosen field of interest. With encouragement, interests and skills can be developed so that people with autism can study or work in their favourite subjects.

Mental health difficulties

Often, people with autism suffer from severe anxiety because of the sensory difficulties they experience and because they are trying to operate in a world that can be unpredictable and difficult to understand.

Depression can also be common among people with autism, as their communication and social difficulties often mean they become isolated.

Related conditions

Some people with autism may also have learning difficulties like dyslexia and other conditions like dyspraxia or epilepsy. You may have autism without any of these associated difficulties, but if you do have any of them, it might be helpful to describe them to support your case.

You don’t need to describe every single one of these features to your doctor. They are more likely to respond if you give one good example from each of the three main areas. Once you have explained why you think you have autism, you could also show them this web page or the section Diagnosis: information for professionals.

 

What if the doctor disagrees?

If your doctor disagrees with your argument, ask for the reason why. If you don’t feel comfortable discussing their decision then and there, you can ask for a second appointment to talk it through.

Reasons why you might need a diagnosis

Diagnosis in adulthood can be a mixed blessing. Some people decide that they are happy with self diagnosis and decide not to ask for a formal diagnosis. For people who do get a formal diagnosis, there are a variety of benefits.

Understanding yourself

Lots of the people we speak to have suffered from mental health problems and/or have been misdiagnosed with mental health problems like schizophrenia. They have known that they have specific difficulties for a long time without being able to explain them. A formal diagnosis can be a relief because it allows you to learn about your condition and understand where and why you have difficulties for the first time.

Gaining the understanding of others

So many people suffer the consequences of being constantly misunderstood. Often the fact that someone has autism can lead to teasing, bullying and social isolation. When the people close to you are able to understand that there is a reason for your difficulties, it’s much easier for them to empathise with you.

Finding services to suit your needs

Some adults with autism may need support with day-to-day living (many others have no support needs). But this support may be given by people who don’t understand autism and the specific difficulties associated with it. With a diagnosis, you can get support from autism-specific services like our Prospects Employment Service.

Joining the autism community

It can be helpful to meet other people with autism, to learn about their experiences and share your own. The NAS publishes a newsletter called Asperger United, produced by and for people with autism spectrum conditions. Another good way to contact people with autism is on the internet and you can find out more about useful websites at www.autism.org.uk/library or join the NAS online community at www.autism.org.uk/community   

You don’t need to have a diagnosis of autism to get this support.

Getting a diagnosis can be difficult and very few adults find it easy.

You are the only person who can decide if this is the best choice for you.”

This article comes directly from http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-adults.aspx

 

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

 

Autism Poetry Challenge Winners

Firstly I’d like to say a big thank you to the following bloggers who all submitted a poem for me to share with my son.

http://somkritya.wordpress.com/2011/06/21/autism-is/

http://boomiebol.wordpress.com/2012/04/09/national-autism-awareness-month/

http://skipmars.wordpress.com/2011/11/05/all-the-clocks-are-broken/

http://skipmars.wordpress.com/2012/02/01/the-birds/

http://skipmars.wordpress.com/2012/05/07/the-roller-coaster/

http://skipmars.wordpress.com/2012/05/11/the-black-cats-tail/

http://peacefulpaige.wordpress.com/

http://rosewinelover.com/

http://sofalogical.wordpress.com/

http://whispersinthewind.wordpress.com/

Thank you all so very much for the emotion, love and understanding that  you have all  shared. As far as I’m concerned you are all winners.

The poems my son responded to the most were the ones that reflected his great love for all things Dr Zeus ……..

So the winners are…..

The beautiful Missus Tribble at http://rosewinelover.com/ with her poem….

 From The River To The Sea

Words flow and babble in my mind

Chattering like a gentle brook

The swelling river comes to play

Taking my words to make them flow

Life’s words the river carries along

To make a story, or perhaps a song

Gentle as a lover’s touch

My words are bouyant and carried thus

My words reach out beyond the void

Reaching out to guide and teach

They fill the ocean, swell and grow

And wash up on a gentle beach

©Gemma Wright, 2012

And the wonderful Skipmars at http://skipmars.wordpress.com/ for his poem…..

All The Clocks Are Broken

All the clocks are broken,

Least, near as I can tell,

Oh sure, they look like they’re okay

But they’re not working well.

For instance, they begin to slow

Just ‘fore each special day

(Like Christmas, or the end of school,

Or near my next birthday).

A gear gets stuck, the clock hands crawl –

Ten minutes lasts an hour . . .

I’m telling you, as far as Time,

The clocks have too much power!

Like when you need some extra ticks

To take a test, or sleep –

Those hands fly round their circled field

Like dogs loosed from their keep.

I know it’s a conspiracy,

A mean and nasty plot,

To shorten or to lengthen

All the days and hours I’ve got.

It’s not just me. There’s others know

(Some grownups and some kids);

That tactics of time monitors

Have left us on the skids.

Like, when she visits every year

My Gramma says to me,

My gosh, the time has sure flown by,

You’re taller than a tree!”

And Dad, when Mom and he are late

To some bigwig affair

Complains, “She sets her clock for turtle time,

We’ll never make it there!”

The problem is, near as I know,

There is no way to trace

The slowings and the goings

On any timepiece face.

When one speeds up they all agree,

There’s no clockwork dissent.

When one slows nearly to a stop

They concur and they consent.

So here we are, the lot of us

At the mercy of these fiends

That speed and slow at their cruel whim,

And dangle us like beads.

We could, of course, rebel and fight –

Resist the time regime;

Not worry ‘bout how long or when,

But sit back, quite serene.

Give Time its place and move along

As Life will lead us through;

And all the clocks, through ticks and tocks,

Will give us time that’s true.

The reality, it’s sad to say,

Is we won’t change one bit,

But continue on the status quo

And here, in Time, we’ll sit.

by L. Stewart Marsden

Once again ……Thank you all so much for being a part of our blogging community and for taking part.

If you’d like to go back and check our all of the gorgeous and inspiring poems that were submitted please feel free to follow the original  link to do so.

http://seventhvoice.wordpress.com/2012/05/10/autism-poetry-challenge/ 

With much warmth and appreciation,

Seventh and Son = )

The experience of discrimination and disablism: As a parent does it happen to you?

I recently read a research article that  offered up some interesting food for thought for me as the parent of a child with autism. It got me thinking once again about the numerous ways that parents are subjected to an insidious, though often not spoken about, form of ‘disablism’ – a particular form of discrimination derived exclusively from negative reactions towards those who are differently abled.

It also got me  questioning  just why it is that parents of children with autism are routinely seen as being somehow immune to the experience of disablism.

In their work ‘Repositioning mothers: mothers, disabled children and disability studies’ Sara Ryan & Katherine Runswick-Cole (2008:201) argue that the continued representation  of  parents as  ‘oppressors’  who perpetuate disablism upon their children, by theorists applying the social model of disability,  has effectively placed parents outside of the disability movement.

They suggest this is due to the division between the impaired and the non-impaired that the social model of disability creates (Ryan & Runswick-Cole, 2008:199). Under such a division, parents of disabled children are considered non-impaired and therefore positioned as being a causal factor in the discrimination and disablsim their children with impairments face (Ryan & Runswick-Cole, 2008:199).

Ryan & Runswick- Cole (2008:201) argue that in doing so, the social model of disability underestimates  parental understandings of disability  in a manner that takes little to no account of the  broader ways acts of disablism are both perpetuated upon and experienced by parents of disabled (differently abled)  children themselves.

Do you think that you as a parent have experienced discrimination/disablism?

If so what form has it taken?

 

 

 

Autism : Extreme Love – Louis Theroux’s Documentary

This documentary follows the experiences of families and teenagers with Autism and Asperger’s Syndrome as they go about their daily lives.

It takes a very honest and powerful ‘warts and all’ look at the Autism experience and openly incorporates the perspectives of both teenagers with autism and their parents.

Theroux does more than just talk  to teenagers and parent’s, he actively follows and engages with them in their schools and their homes. His portrayal covers both the extreme love and dedication that parents of teenagers with Autism experience alongside the very real day to day issues of exhaustion, frustration, fear and concern for their teens as they become young adults and step forward into the world.

In doing so this documentary explores life with Autism from just about every angle tackling many of the issues that are often hidden or under-represented within mainstream media.

It is by far the most balanced and revealing documentary on the Autism experience  I’ve seen in a very long time.

I thoroughly recommend it and would love to hear your thoughts on this or any other  documentaries, movies or books you would recommend?