So. It turns out I don’t simply lean in the direction of autism, I actually cross the line for a formal diagnosis. I’m less in shock than I was a 2 months ago, although I’m still not quite I accept it fully yet. I’ve experienced such a rush and range of emotions, it’s hard to know where to begin. Disbelief – I don’t think these so called psychologists know what they are talking about. Anger – why didn’t someone say something sooner, maybe I could have had a less difficult time living. Grief – where is the old me? The one who was blissfully ignorant about her autism and who therefore didn’t obsess about it every waking moment, even if she found plenty of other obsessions to make her special interest of the moment. Sadness – for that little girl who wanted to join in so much, but didn’t know how, and who thought that school was cruel due the number of pupils crammed into such a limited space. Shame – for the trouble caused by a lack of emotional control and meltdowns. Sorry – to my close family for not recognising this in myself and therefore understanding the need for the self care that can help me avoid the melt downs, sometimes embarrassing them in public, but no doubt always distressing for them to witness. But above all, despite everything I have learnt about ASD in the last few months, and everything I have recognised in myself as I worked my way though book after book, I feel incredibly stupid. How could someone who prides herself on being of above average intelligence /learning ability not know herself well enough to see the ASD? How did I not see it? How did I not know, when others did see it in me? I knew a little about it, as I had questioned whether one of my children, if not 2 of them, were on the spectrum at the Asperger’s end. I had looked into it enough to be confident that one is very likely, and the other if not passing the full criteria, certainly has some strong traits. I even knew there was a genetic component. But somehow I never gave it a second thought that I, the mother of these children (now very high functioning adults) could be the contributer of those genes. In fact, I didn’t even think at all about the genetic element, as if they had just arrived here like that with no input from my husband or I. Maybe I subconsciously buried the thought, I’m not sure, all I know is, I simply did not make a conscious connection to myself.
I’ve not discovered any one individual thing about myself that I didn’t recognise, but I had no idea these elements of my personality added up to me being on the autistic spectrum. How odd indeed.
When I started with the assessment process I never expected to feel so incredibly stupid, this is a novel feeling for me. I can’t believe my ignorance and lack of personal insight, so much so that I literally did not know who I was, for 56 whole years, more than half my expected life time. How could I have been so utterly stupid? How? And this brings me to a key problem. I read a lot, I absorb a lot of information easily, I have a strong interest in science and especially medical science and I keenly absorb such information from many sources, radio, TV, podcasts, magazines such as New Scientist and medical journals. Yet somehow I didn’t fully understand what autism looks like. A wide spectrum, but at the female Asperger’s end, it looks like me! I don’t really look in the mirror much, I’m not terribly interested in what seems like vanity, but this last couple of months I’ve probably looked at my face, examined it in detail, more than ever before. I keep asking myself, is this what autism looks like? Is it? Whoever knew?
So the thing is, if I didn’t understand it, with all my devouring of information, how on earth will the average NT understand it? My own perceptions of Autism and what constitutes “special needs” have been very thoroughly examined and found to be severely lacking. I’m living this every single day but until very recently I didn’t understand that this is autism, so how are most NT’s going to understand what it is and what it’s like to live in this different brain? I’ve been careful about disclosure, and initially I thought that two people within my family would understand the most, as due to their jobs they have a lot of training about and contact with autism. However, even they have both exhibited a lack of insight about what it’s like to actually live with autism, 24/7, 365 days a year. They know everything about what it looks like from the outside and methods of behaviour management, communication training, social stories, etc. They know what it’s like to deal with it 5 days a week during school hours, but that’s it. They then go home and get on with other things, they seem to forget that they can turn on and off when thinking about it, but I can’t. I can’t go home and get a break from it. Well, that’s not entirely true. The way I lose my autism is very simple, take some solitary time. The core features of autism only appear when I’m in the company of other people. No people, no autism ☺️☺️. However, reality means that I can’t live my life with zero contact with other humans, and as much as I really enjoy time alone, I don’t want that for every moment of my life anyway. I’m referring here to autistic people with minimal or no learning disabilities, I don’t have those kind of disabilities so I can only speak for myself regarding unsupervised time alone.
Anyway, the point is, professionals and family don’t fully get it at times, so how are the general public going to know that autism can look deceptively like any other person on the street and in any case many of us are experts at hiding it. I didn’t know and it turns out I am on the autistic spectrum.
Which brings me full circle. How on earth could I have been living it and not known? Several of my immediate family members have professional knowledge of autism and they saw it, but I didn’t. Maybe if my knowledge had been better and my image of autism hadn’t been stuck at Rainman and the curious incident of the dog in the night I wouldn’t have found it so hard to accept myself.
But I am a work in progress and I hope in time I can forgive myself more for my astonishing level of ignorance.
My next post will be about my attempts to work out what I can do to help myself, now that I can’t bury my head in the sand now and try and convince myself that I lean in that direction, but I’m not actually autistic. I am autistic. No matter how much I can’t quite believe it, the professionals have said I am, and they gave me a 16 page report that highlights all my deficiencies. Wouldn’t it be nice if the DSM 6,when it arrives, includes the positive traits as well. Ah well, we can dream can’t we.
So, in the words of Sia, shoot me down, but I won’t fall, I am titanium. Yes, I am, I can survive this, I can.