It is truly terrifying to have lived a life without understanding why it is a spectacular failure.
Waking to a realisation that my world is not what I thought it was and can never be what I wanted it to be, is, by far, one of my most devastating moments. Before and after, a distinct pre- and post-knowing… and it only took three days for reality to clear the fog that had enveloped me since young. Like emerging from Plato’s cave, dazzled by the sun’s reality or Neo’s disconnection from The Matrix is truly mind blowing.
I cannot believe that I’ve walked this earth for nearly six decades in continual search for reasons as to my all-pervading discomfort and misery. Depression that has sat on my shoulders since my first remembered encounter at eight-years-old, along with dogged anxiety that plagued every moment, lying in the background, a muted banging behind a locked door. Whilst vaguely aware of it, I didn’t know what it was, so worked, unconsciously and continually, at insulating myself from the noise thus creating increased anxiety with the effort.
It’s strange how you can live with a profound disability and yet, manage to hide it and I hid it with such proficiency that even ‘I’ did not suspect the truth that hit me this Spring. Both horrifying and revelatory at the same time, so many emotions flooded in on a tsunami of questions. ‘Why me?’ ‘Who am I?’ ‘How can I ever live with it?’ Once I lived with hope of cure, now I know there is no cure. In this present moment, given what I now know, it feels as if my life is over.
What’s this all about? Autism! High Functioning Asperger’s, Autistic Spectrum Disorder or ASD, Aspie for short, that’s what. I discovered that my true essence, the fundamental part of me is Autistic. And, at this stage, I am shocked, yet relieved that my past is now making sense. Not a happy story looking back at all the disasters, the continual failures, the broken relationships and so many lost friends. Dreams down the drain. All par for the Autistic course it seems.
When I found out, what did I do? I did what I now know any Autistic person would do – research. I saw myself reflected in the mirror of books and blogs, painting the picture of me. Gaps were filled and unanswered questions – answered.
How did I arrive on this path of discovery? Strangely via my now deceased middle sister. Oh, I wish she was alive. I could ask her what it was that made her say one day, ‘I think you have Asperger’s.’ At the time, given our sometimes antagonistic relationship, I didn’t answer. But looking back I remember her matter of fact statement, delivered for once, without sarcasm. What did she see? How did she know?
Of course, back then, I went online to read about ‘Asperger’s’. Nothing resonated with me. I didn’t realise that I was reading the wrong criteria, designed by men for boys, who show it very differently to girls and women.
Years later, a new therapist, Jackie Peet, was picking apart my history, trying to get to the bottom of my chronic depression. I mentioned (and dismissed) my sister’s observation, saying that the criteria didn’t make sense to me. Jackie asked if I knew the difference between men and women with Asperger’s, explaining with a couple of examples, how girls mask their autism. A vague recognition drifted in. At home, I researched, ‘Female Asperger’s, late diagnosis.’
Like being punched in the gut, the recognition was immediate in my first findings, followed by three days of crying as I read all the symptoms and traits on medical sites and blogs. I called the National Autistic Society helpline and ordered some books.
A mixture of dismay, relief and sadness ensued, but more than anything – disbelief that I had lived in such ignorance of myself. Yet somehow knowing all was not right. It is a journey, that unless you have experienced it personally, can never be understood.
During this awakening, a breath-taking revelation hit me as clear as day – my mother – now dead, was also Autistic. Her behaviour and personality came into sharp relief, as did the mystery of her mother, the grandmother I never knew, who neglected Mum as a baby. Our family had blamed this remote grandmother for Mum’s coldness. It seems, neither had any capacity to be a typical ‘loving’ mother, known as ‘refrigerator mothers’. Fortunately, Mum married a very caring, openly loving man. Dad was Mum’s emotional rock and she was carried by his extroverted social skills. But she was a very difficult woman as Dad often remarked! He struggled with her aloofness, resistant behaviour and terrible moods. He often called her bad tempered. Now I realise how she was struggling with her faulty social skills and discomfort with people and life. Her awkward, aggressive ways were her defence, learned when young to protect herself with a neurological condition she never knew she had.
‘Poor Mum,’ I thought. With her genes and upbringing, it was amazing she managed to function at all, let along bag the man of her dreams. She told me once, with great certainty that she loved Dad and had chosen him. He fitted her ideal of a tall (had to be six foot) dark, handsome catch.
So here I am, Autistic, at a late age, everyone, except a sister living in Australia, dead. What a predicament.
One of the main issues many Autistic people suffer with is isolation and loneliness. And this is, by far the most destructive element of undiagnosed Autism. My most devastating sadness in life. Why does this happen? Well, I think that’s another blog…