Living as an Autistic Adult in Northern Ireland
Throughout February, we’re getting people from all over Northern Ireland to contribute personal pieces in the run up to the election on March 2nd. 28 days in February for 28 different voices.
There are still a few spots left to fill so get in touch!
At the moment, “Crisis in our health service” is a headline almost every week now. In particular, mental health services have been in crisis for decades.
As an Autistic Adult, I’ve had first-hand experience of just how poor provision for support services for Autistic individuals. Waiting times measured in years. Cancelled appointments. Referrals onto a support service that doesn’t exist. Exclusion from decisions affecting us. The list could go on and on.
It’s easy to forget, behind the headlines, and the soundbites, and the statistical breakdowns, that there are real people behind these numbers.
I want to give you all a little insight into what it’s actually like, as an Autistic Adult. I’m sure you all have heard of Autism, what it is, and what the common effects it has are. But do you know what actually means? For example, if I said to you that I struggle without a routine, you would assume “oh, a routine like doing things at the same time every day, like leaving for work at the same time, getting the same bus, going to the same shop, things like that”, and you’d be correct, up to a point. The importance of routine is one of the most central aspects for an Autistic person to be able to make sense of the world around them. For us, organisation is everything, as logic allows us to break the world into a more manageable state. I’ll give you an example, something we all do every day, which I bet you don’t even think about; getting into the shower, it’s something you just get up and do, right?
Well, for someone like me, it’s a little different. I have a routine that I follow, which goes like this;
I wake up, I go to the kitchen and take my tablets for my ADHD, and then I let my dog out into the back garden. Once I have done this, I go and turn the shower on. Lift out a towel, let the dog back in, give him his breakfast, and then get in the shower. This all has to be done in sequence, otherwise I’ll go into meltdown, a term used to describe what happens to an Autistic person if they become overwhelmed, and our brain begins to go into shutdown, as it cannot process any information. The importance of routine is so much that, if I take my tablets AFTER I’ve let my dog out, my brain will, in effect, shut down. I won’t be able to remember what to do next, I’ll feel dizzy, distant, and start to panic. This sets off a chain reaction, as other parts of the routine become messed up, the meltdown gets worse. It’s a bit like a snowball rolling down a hill, its own momentum makes it bigger and bigger, and faster and faster.
Now, this is just one example of how Autism affects me. I’m sure you’re reading this and thinking “that is bonkers, I mean, is that not difficult to remember to do everything in that exact order?” well, to me anyway, it seems perfectly normal and it settles me down.
There’s a perception that Autistic people cannot have an independent life, or find meaningful employment, which is untrue and also quite unfair on us. Another very common misconception is that we just want to be left alone, and that we are all natural loners, who dislike the company of others. Again, this is untrue. Sometimes, yes, we may like to be on ourselves, but everyone feels like that sometimes. The truth is, much like any other person on the planet, we have different personalities. Some of us enjoy the company of others. Some of us don’t. Some of us like working as a group, some of us prefer to work alone. Autism is a condition that affects every individual differently. No two people with Autism are alike, and this means it can be a difficult condition to provide support for.
I am 22 years old. I was diagnosed with Autism 10 years ago, and the process itself started when I was 10. For the last 5 years, I have had no support from the Health Trust, apart from 2 appointments when I was seen by a support worker at my own home, but they were unable to provide any support, as none exists. You see, diagnosing someone is only the first step in the process. Our politicians seem to be under the impression that, once someone is diagnosed with ASD, there is a great network of support there, just waiting to be accessed, and that once you’re diagnosed, that’s it and you’re sorted.
If you obtain a diagnosis of ASD as an adult in Northern Ireland, you are given some leaflets, a few phone numbers and a “good luck” by the health service as they wave goodbye to you. This has been the case for decades. And this is wrong, on so many levels. For decades, people like me, have been side-lined, forgotten about, lied to, and cast aside as we are seen as broken people, that in some way, we have no real use to society and that we are a burden on people. And this perception hurts.
I’ll leave you with a final little fact. Only 16% of Autistic Adults are in full-time employment. Ask yourself this, if only 16% of diabetics were in full-time employment, you would think that is an absolute disgrace, and expect something to be done about it. With Autistic people, we get shrugged shoulders and “well that’s the way things are”. Is this acceptable in 2017?