It’s been a few months now since my own diagnosis and it stills feels strange some days are better than others. I’m getting there I suppose as best as anyone can being told by a professional that you have a life long condition that has difficulties and makes you react in different ways.
I know I shouldn’t let my autism define me and having that label doesn’t suddenly change the person I am or was but it really does, and that makes me feel sad. I feel like I have lost something. It’s hard to explain what I’ve lost or why I feel that loss?
It really is hard to explain that little label shouldn’t make me feel any less of a person but it does.
It makes me feel guilty: guilty that I feel disabled in some aspects of my life but I know that there are people worse off than me or have a tougher battle and struggle but it makes me feel guilty for the way I feel.
It makes me feel angry: angry that I feel life is difficult that I struggle to fit in that I don’t look disabled and people constantly judge. I feel people looking at me and it makes me feel anxious and worried for no reason!
It makes me feel sad: sad for a childhood I lost because of not being diagnosed until adulthood. I feel that I could have been or done things differently.
Then I feel guilty again for all the feelings I have above! It’s a vicious circle…
But I tell my son who also has autism that I wouldn’t give him a magic tablet to make him better by taking his autism away, because his autism isn’t bad it makes him who he is. If his autism was taken away it would change him, yes it would get rid of the sad low days the depression the anxiety the nervousness the social awkwardness the social difficulties and emotions that go with it that is heartbreaking to watch. But it would also take away his attention to detail, the carefullness of his drawings, his memory of history and science, as well as the masses amounts of empathy and loyalty he has the lovely caring nature that is my son. If he was to take that magic tablet to take away his autism that would take away my son, and I don’t want that and neither does he.
So why do I feel bad – why does my autism make me feel that it defines me?
I think it comes down to lots of things: There is very little help out there for adults and even less for female adults and none for those that are mums with autism with autistic children. Plenty of sites giving advice on how to help autistic children and deal with their meltdowns and shutdowns, how to create a good environment working on social stories and support networks for education. I know I could just transfer that info to myself but being autistic I can’t. I can follow those rules for my son and other children but when it comes to me I can’t adapt it.
But no sites tell me that being a high functioning autistic female is ok and how to deal with my own meltdowns whilst holding down a marriage, job and two children. Because according to statistics I shouldn’t have empathy or love or think about being independent and to have a job and be married well I am in the bottom percentage for this to happen. The autism world is a minefield to be honest no one ever fits into a category we are all so different and that makes it even more complicated than it really should to find help and support out there.
But as I am writing this I want to tell others that it’s ok and we can do it and there is no magic tablet that will make us better and we shouldn’t have to feel like that. But society makes us feel that way…
So how do I feel?
Well numb to be honest some days I want to shut myself away from the world and then the next I want to change it! I knew I was different I find certain situations more difficult than I should do and I thought I suffered from mental Illness for years and I thought I was going mad, it came to the point where I couldn’t carry on any longer, I was at breaking point and no one really knew as I put on a front, and that was hard I carried on trying to ignore it until I couldn’t anymore. So one day I asked to be looked at to tell me for once if I was autistic or had severe mental illness. I felt I was going mad. It was such a relief to be diagnosed but then I felt guilty, angry and upset as at the age of 34 it has been a long time in coming. I just kept thinking of my family and how things could have been so different – maybe if I was diagnosed as a child I would have had the support I needed back then, and so would my family that could have changed my mums illness and it could have made her not feel so bad? Maybe I wouldn’t have left home and school at 16/17. Maybe I could have been something… It felt cruel thinking all these thoughts but it was true, if I was diagnosed as a child my life would have been so different. But I can’t think like that because if it was so different I wouldn’t be the person I am today or have the people in my life that I have now. So I feel guilty thinking those things it really took it out of me and still does.
I learnt a lot from having to grow up without knowing, I created my own social etiquette, my own social cues and rules as it were. My own coping strategies and resilience. But the hard way, I ruined friendships and relationships without having realising this, but I also learnt how to be by myself at an early age to do things by myself. In that I created myself to be head strong and a fighter. I feel I always had to justify myself and that was hard back then and its still as difficult now as I feel I have to prove to people everyday that I can do things regardless of my IQ or my schooling or of my social class or where I come from? It’s hard I shouldn’t feel like this but it’s always there in my head.
Has my diagnosis helped?
Yes and no! Yes because I now know why I find certain things difficult or I get easily confused by people and that side helps, it helps knowing why I do things or say things or react in a certain way and that I am not going mad. But no as people are funny, some treat me the same and others I know have that feeling that I’m either on a different planet completely and treat me differently the way they speak or look at me – I can tell its that look in their eyes that makes you feel like your a child and that you are helpless or that I am just difficult. That whole justifying myself feeling that makes me feel guilty. Some people just don’t believe it and think that I need to get over it as I don’t look disabled or autistic. That’s the hard one, as I do have a diagnosis and it was a tough process and not one that I took likely. It has been a roller coaster for myself and family.
I do find things difficult I am like two different people, I put on a front and hide behind my work to the point that sometimes that is the only persona I know. Being me is more difficult I feel raw and open and I don’t like that it makes me feel vulnerable. I struggle with being me and it is something I am starting to accept more, and come out of my shell and my diagnosis has been apart of that process. But I am worried that now I will just hide behind my label and that autism will define me.
I said my autism shouldn’t define me, but it does and it’s ok?!