Autism and Motherhood

Autism used to be for ‘boys only’. That is said slightly tongue in cheek. For the last five years or so there has been increasing recognition of women and girls on the autistic spectrum. Diagnosis of women and girls has increased as a result, though a few will still be of the naïve opinion that there is an ‘epidemic’. This puts me in a fairly unusual position, being a woman in her late thirties newly diagnosed with autism. There are, of course, many of ‘us’, but according to ‘official records’ we are but few.

Anybody with even the slightest experience of autism will know that services for autistic children are questionable, though improving painfully slowly. Services for autistic adults, especially women-specific, are more or less non-existent. This leaves many people on the spectrum struggling to understand who they are, why they are, how they are and how best to help themselves. Before my diagnosis I was driven to find out ‘what is wrong? Why don’t I work? Why can’t I cope? Now I feel driven to understand, research, discover and also to help.

The other minority I find myself a member of is that of being a mother with autism. Google ‘autism parents’ and you will find mountains of information about raising an autistic child and coping as a parent of a child with autism, what is almost impossible to find however is information, help and advice about being an autistic parent yourself. It is also hard to find information about what it is like to be a child with an autistic parent. The Cambridge Autism Research Centre is currently conducting a survey into autistic motherhood: http://cambridge.az1.qualtrics.com/SE/?SID=SV_9B7H0PylzWuztpb

This is current cutting edge research and the top professionals in this field, in the world, are ‘only just’ looking into very basic ‘living with autism’ facts for motheMotherhoodrs and fathers who themselves are on the spectrum.

This afternoon I read this:

“Parents with autism are not only psychological nightmares to their children, they are also genetically toxic, passing on their disturbing traits to their children and grandchildren.”
It was written in July this year. I can’t explain to you how it made me feel.

Somehow I want to and I will make a difference in all of this.

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Hole

Hello there! I have been in a hole and I’d like to come back here again. A friend of mine sent me this poem and I thought others may like it too:

There Is a Hole in My Sidewalk
Autobiography in Five Short Chapters By Portia Nelson

Chapter One

I walk down the street.
There is a deep hole in the sidewalk.
I fall in. I am lost…I am helpless.
It isn’t my fault.
It takes forever to find a way out.

Chapter Two

I walk down the street.
There is a deep hole in the sidewalk.
I pretend that I don’t see it.
I fall in again.
I can’t believe I am in this same place.
But, it isn’t my fault.
It still takes a long time to get out.

Chapter Three

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in…it’s a habit…but,
My eyes are open I know where I am
It is my fault.
I get out immediately,

Chapter Four

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

Chapter Five

I walk down another street

Linear processing

Sally & Anne

In Baron Cohen et al. 1985 experiment ‘Sally-Anne’ it is suggested that many children with autism do not understand that because Sally doesn’t know her marble has been moved,  she will look for her marble where she originally left it.  The children know that the marble has been moved, so they think Sally also has this information and will look for it in the new location.  ‘The experiment seemed to reveal an impairment which was specific and unique to the condition of autism, an impairment in the ability to understand that people have mental states which can be different from the world of reality and that can be different from one’s own.’ (Autism in the Early Years, Val Cumine, Julia Leach & Gill Stevenson 2000)

I would propose that this reasoning may not be entirely accurate.  My own experience and those of other high functioning individuals I know suggests that what is ‘impaired’ is not the understanding of different mental states and ‘realities’, but the ability to think of these simultaneously.  I believe that it is the brain’s difficulty in performing multiple tasks simultaneously  which lies at the core of many ‘autistic difficulties’, including social imagination, but I would argue against social imagination being the primary core in itself.  It is also this ‘linear’ thought process, engendering great detail and depth of thought, which allows for ground breaking discoveries.

If one’s thinking can be likened to spaghetti, then one could either have thoughts similar to a bowl of cooked spaghetti, or a bowl of uncooked spaghetti.  In order to follow through a thought process it is easiest to have uncooked spaghetti, a thought can be followed from beginning to end, clearly and without interruption.  A neurotypical brain seems to have the ability to order thoughts alongside one another as uncooked spaghetti.  Not only that, it is also able to simultaneously switch attention between bits of spaghetti, pausing along each piece so as not to lose the way to the end.  However, in order to work as effectively as possible, an autistic brain needs to start at the beginning of one piece of thought spaghetti and continue, uninterrupted, right to the end.  If this process is interrupted, the person will need to start from the beginning again and anxiety builds.  If the person is expected to follow a number, if not numerous, pieces of spaghetti simultaneously, as a neurotypical would do automatically, the brain becomes a bowl of cooked spaghetti thoughts and it is very difficult to follow a single thought through from beginning to end.

In the morning my brain is uncooked spaghetti, by 4pm daily it is cooked …