“ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

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“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.

If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.

I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.

I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.

Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.

1098119_10151923638169903_2089384885_nThere is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.

Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.

I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.

I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.

I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.

So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep.  I might never be at ease with you, but I am more at ease with myself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”

This amazing story which so aptly reflects the maze of confusing emotions and experiences  that so many women, who are diagnosed later in life  with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .

 

 

Wilfull Change

Magaret Mead, the late great anthropologist, once said;

“Never doubt that a small group of thoughtful,

committed citizens,

can change the world;

Indeed,

This is the only thing,

That ever has.”

 

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?

 

 

 

The Medicalisation of Difference, Homosexuality, Women, Pregnancy and Birth

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Kate Cregan (2006), in her work “Mapping The Human Body”  sites the example of the non existence of  homosexuality until it was labelled and defined by the medical fraternity in the late nineteenth century as a clear and present example of the  very capacity of the medical system to both construct label and define it’s meaning.

 

“Homosexuality became known in a medico-legal way within particular knowledge systems that there after have controlled its meaning” (Cregan, 2006 :46). Deborah Lupton (2003) in her work  ‘ Medicine as Culture’ also draws attention to the way in which the medical establishments definitional power is at play in the twenty-first century siting the medical professions latest assertion that genetics may be able to predict illness as  evidence that“ the knowledge base of scientific medicine has encroached even further into defining the limits of normality and the proper functioning and deportment of the human body” (Lupton, 2003:1).

 

According to Lupton (2003) this desire for the control and regulation of the human body is particularly pertinent to pregnant women enmeshed within  a health system that  seeks “increasing  control over women’s bodies” through  medicalization and surveillance (Lupton,2003:158).

 

The regulational and  definitional power with which medical institutions control and regulate the female body can be seen clearly in Karen Lanes work on pregnant women.   Siting Ulrich Beck’s analysis of risk in the modern world, Lane shows how the very notion of ’risk’ has now, through a medically induced process, become synonymous with the biological acts of both pregnancy and of giving birth, so much so than women who choose not to give birth in a hospital setting are often accused of not caring for or risking the health of their unborn babies ( Lane, date, page).

 

The irony that  for hundreds of years giving birth has been regarded as a ‘natural’ biological act that has now been medicalized beyond the point of individual choice for the women concerned, indicates the immense capacity of  medicalised perceptions to invade and persuade social thought and individual behaviour (Lupton,2003: 159). As Norbert Elias noted  “this kind of dictum ignores the wide variability  of bodily development and leads to  the patholigisation of what are essentially natural bodily functions” ( Cregan, 2006: 30).

 

The control mechanisms set in place within the debate over the safety of homebirths are themselves defined by the medical establishment that provides the very power base with which it seeks to regulate and control the human body and clearly earmarks how in  “post modern embodiment, we have internalized the control mechanisms that are set in place by various authorities of delimitation institutionally legitimated epistemologies”  (Cregan, 2006: 59).

 

The fact that pregnant women even feel the need to seek medical permission to engage in a home birth  provides proof of just how medically regulated and controlled such biologically natural processes have become and reinforces Foucault’s initial observation that such definitional capacity “results in a more subtle and diffuse power by which we internalize regimes of control and learn to self-regulate our selves through the regulation of the body” ( Cregan, 2006 :41).

 

 

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?