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.