Something I don’t talk about very often (as I’m still trying to figure it out myself) is living with Autism. It’s actually quite strange, after so many years of misdiagnosis and medications I should never have been put on (which had serious effects upon my health and a relationship), but after all the years I wrote about my withdrawal from the medication and the literal hell I went through, repeatedly on the phone to the Samaritans as my withdrawal was worse than coming off heroin (according to a heroin addict). I genuinely wanted to die and every day through that there’s not a day I didn’t think about ending it all and I’ve tried to be open about what I’ve been through and how it affected me, even sharing a blog of what I was going through at the time, which had the great result of helping others open up to what they were experiencing.
One of the things with Autism is that it’s very much a social condition, in that people living with this have trouble communicating and even starting relationships (I am really crap at this), even friendships are a struggle, but I’ve always tried, yet always been the outsider. It’s something I’ve become used to over my life. I’m the outsider, the loner, the one who’s always on his own because it’s difficult to communicate things and crowds present a problem to us. Don’t get me wrong, we’re mostly social people, but crowds can pretty much freak us out, not to mention the frequency pain of so much different noise that can literally reduce us to tears. This, for me, is a real problem.
Anyway, one of the things I’ve been thinking about this evening is the link between Autism and Mental Health. Now, Autism isn’t a mental health issue as such, but there are certainly genuine links with regard to anxiety and depression for starters. These links shouldn’t be ignored or undermined, even though Autism is a disability there are such mental health attributes that can lead to misdiagnosis, which is what happened to me for over 20 years. I don’t have anxiety or depression, but I do experience them as they’re a part of my disability. Yes, Autism is a disability, it’s not a condition, no tablet is ever going to cure it, it’s not a phase we’re going through, this is literally who we are. We may not be the same as you, not sure all of us want to, but we are our own individual selves, we don’t follow fashion, we don’t toe the line and we can oftentimes seem miserable and antisocial because we may not be smiling or engaging with what you want to talk about.
The thing there is we’re very singular people, we exist in our own worlds and when we are able to open up it’s something that’s often misunderstood and unappreciated because no one really knows how difficult it is for us to do that. I think I’ve only really opened up my feelings to one or two people in my life, and even that may be an exaggeration! I know there’s one. Oftentimes I wish I could show my feelings, as there’s a supernova in there ready to explode! In there is where it’ll stay though, which is probably best as I’m not the most tactful of people.
Oftentimes, we can seem cold, uninterested, and disengaged. This isn’t intentional and the only way I can explain this is that there’s no awareness that somethings happening. It’s kind of like being tunnel-visioned. I’ve often been called robotic, or a ‘cold fish’ but really the opposite is true, the thing is is that the emotions I’m apparently supposed to portray on occasions don’t register, which means I don’t smile much as my face doesn’t know what to do with itself, but then again, I still laugh at funny things (it had better be really funny though!).
I’m not going to apologise for the way I am, I will apologise if I’ve ever hurt anyone over the years, I’ve always tried to do right, but often get it wrong and I often wish I could be different, but then I wouldn’t be me, and Autism included I like who I am and really don’t care what others think about me, I’m not running a fan club. One of the many, MANY, bad aspects of Autism is this being different, which means we’re often ostracised from social groups and bullied because we’re different. I’ve come to realise that many people don’t like people who are different, don’t like people who are outside their social norms. Maybe it’s them with the problem though as what they’re into doesn’t seem that interesting to me anyway, I like my books, my films, my music, my walking and don’t really care about whatever saga is happening with the football this week as it’s not a part of who I am. The thing is though is that we’re supposed to fit in with your ‘norms’ from childhood we’re taught to fit in, through school, if we don’t fit in we’re the class freak, and in adulthood, we’re shunned by most social groups as we’re ‘different’. Still, through all this, we’re bullied, we’re abused and we’re shit upon by anyone who doesn’t understand what it is we’re living with, or who we are. I’ve been bullied through most of my life, it’s not something I like, or even become accustomed to, it’s something I have to live with because that’s how bad the world really is. I don’t enjoy life, but I determine to make every day a new adventure, which makes some of it worthwhile.
I suppose the purpose of this post is to bear in mind that there are those of us out there who have invisible disabilities and conditions and it’s often something that’s ignored and berated by those who we know. This happened to me this evening and I’ll be honest, it has affected me, I suppose I’m even upset about it to the point that I don’t want to go to the place where I’ve been drinking for the past 30 years. It may not make sense to many of you, may even seem like an over-exaggeration but that’s the way Autism works. It doesn’t matter whether it makes sense to you or not, as long as it makes sense to us then that’s how it goes.
I often think about how different my life could have been if I hadn’t been misdiagnosed all those years ago, I’d certainly be a different person and I hope my personal life would be better than it is now or even exist for that matter! I’ve been diagnosed as Autistic for less than a year but have been Autistic for all my life and even through all the crap, bullying and abuse I’ve had to go through I’m pretty proud of what I’ve achieved in my odd little life, yet In many ways, I miss the life I’ve never had.
Anyway, that’s a few minutes inside my head, following a crass and ignorant comment from a rather ignorant and ill-informed person who should actually know better.
Founder and Editor of Pilgrim House, currently researching folklore and early Welsh Christianity and curator of the archives of the lost village of Pontyddim.