Yes, I am. I’m actually OK. Maybe I’ll still have the odd wobble from time to time, maybe when someone makes a comment that they think is well meaning, but that comes across as patronising or shows a distinct lack of acceptance or understanding, but I think that I’m going to be OK. It’s going to be all right.
Of course in early September 2016 I thought my whole world had imploded in on itself and I don’t think I’ve ever felt quite as alone as I did when I first looked at the scores I was getting on ASD indicator tests online. At that moment I didn’t think I’d ever met anyone else with Asperger’s, autism, ASD, call it what you will. Of course I’m now absolutely sure that I was wrong on that. Even if the figures for males on the spectrum are close to correct, I have a suspicion that there are very many more unidentified females out there. I mean, come on, I was 56 before I even suspected I’m autistic, somehow, I’d masked and coped (or not sometimes) and I simply thought I was a rubbish human being. Ok, I’m rubbish at trying to be NT, but I spent all those years believing I wasn’t as good as everyone else, that I was different somehow but not understanding why or how, that because I found interactions stressful and difficult and I preferred my own home space more than anywhere else and leaving my home was difficult on some days, that I was somehow a lesser being. I questioned the value of my existence, whether it was worth staying alive, if I even deserved a space on this earth. Multiple times, over most of my lifetime since my teens. And all that time I never once associated the word autistic with myself. I always knew I’m bright, it has been the one thing I have going for me, but I have trouble with so many other things, especially when they involve people. I still believe school is a cruel place to force children into every day for 13 years. I have no happy thoughts about any of my time in school. I didn’t know why, but I certainly found it incredibly stressful. I used to want to live in New Zealand, based purely on the fact that it is so sparsely populated and I once read that there are (or were at the time) more sheep than people there. I didn’t know why I felt it would be such a lovely thing to live with a less dense population (I grew up in London, which is pretty highly populated), but I craved countryside and fields and trees more than being with other human beings. Don’t get me wrong, I don’t dislike all people, I just find it exhausting and stressful dealing with them too much. I love my family dearly and until my babies were born I didn’t know it was possible to love someone so very very much, so deeply that it practically hurt my heart with all the love I had for my babies. Of course the bond has loosened a little since they grew up and are starting their own families, but they are still at the centre of my consciousness and my heart. However, since they became adults, I find I do tire from too much intense contact with them and I was aware of it, but embarrassed to admit it and thought I had to be the worst mother in the world for feeling like that. Yet another thing I thought made me “not worthy”.
I’m rambling away from my point as usual. What I mean to say is, I had been struggling sometimes to put one foot in front of the other, day in day out, but I kept going, for the sake of my family, my children. And I had no idea that I wasn’t a rubbish human being, I was only rubbish at trying to be like the majority of human beings. What didn’t realise back then was that I’m a pretty good autistic. So good in fact, at finding ways of coping and masking and covering my struggles, that it took all of 56 years for anyone to think I could be autistic. Well, that’s not quite true, it transpired that one of my now adult daughters and my sister, who both work with children, some of whom are autistic, had both had a suspicion that I might be Asperger’s, but they didn’t persue it or mention it to me or anyone else. So I carried on, ignorant and barely coping when I got a job outside the home, for the first time in over 30 years, my first time back into the big wide world of regular contact with many people in 3 decades.
Now if I could go that long undiscovered, how many other women are there out there like me, maybe in their 30’s or 40’s, waiting to make the shocking discovery at 56? I keep reading blog after blog by women diagnosed after the age of 30. Yes there are men as well, but males seem to be picked up much earlier.
I’m starting to wonder if the gender ratio may be much closer than previously thought, maybe even close to 1:1. Females manage so well with masking, they are harder to spot unless you know the more subtle outward signs we may exhibit. Most of the time I think we just battle on with our internal struggle, thinking we are rubbish at the very act of living, but so unaware that we are simply wired a bit differently to the predominant neurotype of human beings.
It was huge shock to discover this about myself. Huge. I can’t describe how huge. I wanted it to stop (stop what? I didn’t know, I only knew I was in deep distress and I wanted the distress to stop), I wanted to go back to the moments before the epiphany, I wanted to die, I wanted to go to sleep and never wake up again.
But I followed advice and went through with an ASD assessment and I got my 16 page report with that sentence – meets the criteria for ASD. The last 4 pages of the report are mainly recommendations to help me come to terms with the diagnosis and there’s a comprehensive reading list that I dutifully worked my way through, along with devouring blogs by autistic authors, mainly female. So many that echo my own thoughts, feelings, experiences. I started to realise I’m not alone. I don’t have any great desire to meet lots of them in person, but it’s so good to know that I’m not such an oddball. There are others like me out there. We are all so alike but also so different. I love it. Not only have I come to understand myself, I’ve gradually come round to accepting myself. Thank you neuro-sisters, you have saved my life, literally. As I saw that others often had similar crisies of identity, they passed through it, some quickly, some slowly, but they did pass on through. I started to hope I would also do the same, week by week I started to believe I might be ok. I started to think that this is no great disaster. I’m not disabled, I’m a bit different. I can’t change that invisible difference any more than I could change the noticeable difference of my skin colour (by that I mean by being white, I’m different from people with brown or black skin). I did want to initially, I kept crying to myself thinking I don’t want this. But it’s not a “thing” I can give away, it’s just me, the way I’m made, and just because I find the majority world challenging to deal with and they find us equally challenging to deal with, doesn’t make the majority better or worse. It only means there are more of them than us and therefore they get to run the world and set up the environment to suit their needs, which doesn’t necessarily suit our needs. But I’ve coped up to now, so I will continue to cope. It’s hard, I don’t cope all the time, I shut down most evenings after a full on day at work, and if pushed to do too much I’ll end up in meltdown. My relationship with my husband was suffering badly from me working and arriving home all peopled out and literally unable speak, barely able to nod never mind force words from my brain to my mouth and out into the air, but with our new understanding of how I operate (running AOS rather than NTOS), my husband knows it’s nothing personal against him when I don’t speak. I simply don’t have much battery power left and I need to recharge by being left alone (not necessarily literally alone, I like him in the room, but I don’t want to interact for a while, it’s too much effort), he doesn’t force me to talk to him, he quietly lets me be, allows me alone time within myself, in my own head. He knows to write things down sometimes, he knows I can’t keep with his super fast brain processing speed when he talks and moves from one topic to another very quickly. He knows at the weekend allowing me to potter alone in the garden is good for him as well as me, because I’m much less likely to meltdown later. And we are getting along so much better now. All because we discovered who I really am and adjusted our interactions accordingly.
So I’m OK and I’m going to be fine. I’m finding pride in my new identity, a sense of belonging to this tribe that I’ve never ever felt before, I was always on the outside looking in, not sure why, but not knowing how to join in. But now I have a tribe to belong to and I can still belong in my family and my amazing work colleagues team (they have accepted this all so much faster and better than I did initially). We live in a multi cultural, multi faith, multi neurotype, multi gender identity, multi sexual orientation world. It’s been ok to belong to more than one of those groups for a long time, and now I suppose I have my own cross over identity. And it’s fine. In fact it’s good.
I do believe I could turn out to be very OK indeed.