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.

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

Late diagnosis and loss of identity

It is a fact that humans are social beings.  It is through being together that we support, protect, nourish one another and thrive.  It is said that the main difference between us and our closest ancestors, the apes, is our development of culture and society.  Every animal is born with the genetic make up for survival, whether that is distinctive plumage to attract the best mate, or a social brain.  It is through social communication that we ensure our survival; subtle body language, touch and eye contact includes or excludes individuals in a group, indicates the ability of someone to lead or protect the pack.  Any genetic weakness in these areas means an extra mouth to feed, rather than an extra pair of hands to hunt.  It is in this way that those of us with Aspergers can be ‘socially disabled’.  Many Aspergians are able to ‘learn’ social skills and can appear successful in an NT world, however for none of them will this be ‘natural’ behaviour.  The AS brain will not naturally initiate the social body language required in the split second of opportunity required by the NT brain to confirm ‘belonging’ and ‘acceptance’ in the social group.  As a result, growing up with undiagnosed AS can lead some individuals, especially women, to spend a huge amount of time imitating the social behaviour of their peer group, in order to try and fit in.  Unbeknownst to me this is exactly what I did.   In fact, I have become quite an expert and find myself mimicking accents, feigning interest in unlimited topics of social ‘chat’, altering my clothing according to company.  The problem with this ‘social learning’ is that inside, how you see things, how your brain interprets the world, will always be different to someone without Aspergers and you are aware of this difference, even if you cannot explain or describe it.

At the same time you leave yourself behind.

Swing

For many aspies who cope through imitation, this mechanism begins at a very early age.  I became aware during primary school that I was different to the other children and I knew that this difference could be seen and was not accepted by my social peer group.  The need to belong socially was so strong that I believed this was the most important thing in life.  I didn’t know why I was different and what I was doing wrong to make the other children reject me.  Initially I went into myself and studied hard, but when the time came to discover myself as a teenager I had no idea what I was supposed to be doing.  If I found someone who would accept some kind of friendship with me then I would try my hardest to like what they liked and do what they did, rather than developing my own interests and meeting likeminded people.  Spending so much time trying to be like other people makes you lose sight of who you really are inside.  I feel like I left that person behind as a seven year old child in the playground, I rejected her in the same way that I felt rejected by most of the other children.

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 …

Echolalia

I have recently re-started reading ‘academic’ literature and other individual’s personal blogs about Autism.  I had forgotten how comforting this is and also how I find that others writing will trigger a flow of my own.  I just read about echolalia (repetition of speech).  Echolalia is one of those rather academic sounding terms and one which I was quite sure did not apply to myself.  To my astonishment I found myself saying out loud “I do that!” and I do.  Well everyone does, but autistic people do it to a greater degree and often for differing reasons than your average NT.

My friend and autistic confidant was just as astonished that I had been surprised.  Almost weekly I ask her to ‘hold on a minute’ while I write down her thoughts and advice word for word.  If I don’t write them down as she speaks I wont remember them at all.  I may remember the overall jist of the conversation , such as ‘don’t feel guilty for feeling this way’, but I wont be able to use the discussion in a social context, even one to one with another person, my mind will go totally blank, I can remember that I have good reasons for sticking up for myself in a given situation, for example, but I cannot formulate a sentence to do that when I come to the situation.  I experience muteness (another autistic thing I thought I didn’t do!).  If I have written something down word for word and gone over it, then I have a much better chance of being able to formulate a sentence relaying my view or feelings.  Until now I have thought that this is ‘cheating’ because I am repeating my friends words.  Now I realise that my friend is putting into words what I am struggling to say for myself and that repeating (echolalia) her word for word is not pretending, or cheating, or ‘using’ her in any way, it is merely a tool to help me express myself.

I realise that the battering ram of high school and university’s pleas for ‘no plagiarism’ had the result of leaving me with an intense guilt and shame at using echolalia as a coping mechanism.  Whereas actually I should be applauding my ingenuity at using echolalia so effectively to support my day to day life.  There is nothing to be ashamed of, but it feels like there is.

Hello world!

The primary purpose of this blog will be to reassure others in their own autistic journey.  In doing so I wish to share my own journey into autism and my passion for contributing to the growing awareness and understanding of the autistic spectrum.  I am hoping that by doing so I can finally embrace my own autism and accept who I really am.  It would be wonderful to help others on the spectrum and to provide wisdom and guidance from inside the spectrum, to those who try their best to support from the outside.

Over the last few years I have gained much solace from other female spectrum bloggers.  I have been inspired and encouraged by their own personal journeys and am looking forward to entering their blogging world.  Autism can be a lonely place and it seems that although I crave social contact, I also find social interaction an indescribable struggle, leaving me pretty shattered.  Perhaps this online world of aspies may accept me as one of them, perhaps socialising this way may be less exhausting and more giving, on both sides.  There’s only one way to find out…