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 mothers 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.
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.
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…