In Real Life

I just came out of a hot bath, I’m eating Hickory Sticks and chewing on a few Skittles. I shouldn’t yet I am, because it’s a choice – one that I make willingly, one that is out of the ordinary yet that as an adult, I have deemed acceptable today, in this very moment, because I can handle it. You may not understand where I’m going with this, but here I go.Today, I was sort of ‘taken back ‘ by these words – again. ‘In real life ….’ …. Let me give you context. Someone I know that is on the spectrum had gone to a public event and had a hard time functioning. Someone in his circle told him: ‘in real life, you’ll have to go to … blah blah blah…” He looked at me and asked : “did you go?” “No I didn’t”, I honestly answered. We left it at that but it bothered me all day – and so, as a person on the autism spectrum I come to you tonight and ask that you PLEASE refrain from using the term: IN REAL LIFE to get us to do something, whether we be 15 or 49 years old. Truth of the matter, it’s not always true and if often causes us more grief than sense. Let me explain this on a sensory overload kind of perspective. Before I begin, let me remind you that what you know ‘OF’ me is what I ‘choose’ to show you or to share with you. The public person that you see at work or in the daily grind is NOT what really goes on behind doors. I am constantly working, constantly using strategies to cope and to understand what is going on in the real world. I’m exhausted. I’m tired, and at times, I’m fed up of always having to explain how ‘painful’ the realities are around me. Let’s take lighting, for instance. Fluorescents and LED lights are so very painful to me, and to many others on the autism spectrum. Not only to they cause migraine-like symptoms, but the flickering makes me feel like I am going to sometimes pass out. I can’t stand when people tell me: get used to it : IN REAL LIFE, you’re going to have to deal with lighting. Truth of the matter is, I don’t. I avoid trouble ‘light’ situations. I’m a teacher and in MY classroom, there is only natural lighting and if I need to turn on the fluorescents, it’s just a very few – for the rest have been removed: doctor’s orders. I’ve had adults enter MY space and flick on all the lights, only to have me nearly throw a tantrum and growl that they turn them off. When I do, they look offended and bewildered. IN REAL LIFE, there are lights, they say. IN REAL LIFE, I avoid them. I wear sunglasses. I avoid areas that have painful ones like Walmart. And Costco. And No Frills. And … And …. IN REAL LIFE, I get sick when I’m in that lighting and so I avoid them. In my workspace. In my homespace. So guess what: IN REAL LIFE – …. is a bunch of bologna in this situation.Let’s talk crowds and noises. And smells. And sensory input. I avoid crowds like I would the plague. Too many people makes me anxious. It annoys me to no end and often sets me off for days. Yet you don’t notice this – because I work so hard at ‘hiding’ it to fit in. Force me in a crowd where I have no control and you may see me go in full panic mode. I have trouble speaking. I get confused and extremely irritated. Imagine that : I’m a full grown adult – a TEACHER – and I lose it. Yet every day we force many kids on the spectrum in social gatherings because IN REAL LIFE – people do this. Nope . We don’t – and they don’t. I choose not to – because I’m an adult. I know that it hurts … my sensory output becomes brittle and it sometimes takes me days to get over it. But you don’t see this. You don’t judge me – or if you do – you keep to yourself because I am an adult …. See where I’m going with this ?Let’s talk conversations and ‘friendships’. As an adult, I will hold conversations with adults because they are my colleagues and my friends. I will talk for hours with my family …. yet I will avoid ‘social’ chit chat. It makes no sense to me – nor does it hold any interest to me. I have difficulty with group work on days where I am ‘ASPIE’, and I prefer to be alone. IN REAL LIFE, this may seem as a surprise, but it’s worked well for me – this far. Twenty-five years in a career with many different roles and encounters have led me to believe that IN REAL LIFE – I ‘DONT’ have to talk to everybody. I don’t need to open up about this or that if I’m not comfortable. I never participate in ice breaker activities , nor do I open my formal talks with them. I sit in the back of the room. I have escape plans ready and if I’m fed up or about to explode: I get up and leave. Because I can, of course. I’m an adult. My close tribe members will tell you that they approach me carefully – and that on some days – they’ll just plainly leave me alone and accept that it’s not a day to speak to me. IN REAL LIFE – this happens – and it’s ok – because I’m an adult. See ? Please don’t force some of our younger kids to interact and make eye contact on difficult days. Sometimes, it takes all of our energy to simply process what is going on around us – without having to talk to those IN the environment. We’re not being rude – we’re trying to survive. IN REAL LIFE – we do that all day long. Some of us melt down many times in a day. Don’t judge us. Help us. IN REAL LIFE – we’re doing our best … We’re not manipulating the situation … ( I’ll have a whole other blog about this later on because guess what … we ALL manipulate at times …. Don’t believe me ? Mmmmm….. Who chose the clothes you wore today …. ? to be continued ….)Finally, I think that I’m going there – I’m going to make this comparison. You may think that it’s direct or unwarranted. Yet tonight, after having a day riddled with autism symptoms, I feel that I need to do it. Think of someone in a wheelchair. Or someone with a hearing aid. Or someone with a pacemaker. Now tell me – would you remove ANY of these aids required to survive an ‘ordinary’ day ? By forcing certain of those things I discussed above upon individuals on the spectrum with no way out is the SAME thing. IN REAL LIFE – I’ve had to function without my coping mechanisms because it wasn’t the ‘norm’ – or it wasn’t ‘accepted’. I know – I’m going to read the comments that say: we ALL have something Anne – and you would be right. But this is my autism page – where I talk to you about autism symptoms. Since I have a voice and that capacity as an adult to explain to you in words what some of our younger kids experience, I’m doing so. IN REAL LIFE, we all need someone to go to bat for us on a bad day. IN REAL LIFE, there is always a way to compromise. Don’t take away our ‘comfort’ zones according to what you ‘think’ I feel or ‘need’ , according to a book that you’ve read or from what you ‘think’ I SHOULD do. IN REAL LIFE, we have open dialogues. Open conversations. IN REAL LIFE, we help each other. IN REAL LIFE, I have a ball or a chain which I play with on a bad day to help me cope. IN REAL LIFE, I eat lunch alone for an hour because I need to regroup my thoughts and feelings. IN REAL LIFE, sometimes it gets so difficult to function that I can’t speak for hours or move after I’ve come home. IN REAL LIFE, I am a professional woman with autism. You may think that I have my sh** together and if I do – I’ve succeeded in ‘blending’ well. IN REAL LIFE, it’s a struggle every single day that I have to go outside my home. It’s World Autism Awareness Month. Use the remainder to ask us questions on how you can help up a very painful world. IN REAL LIFE, we’re all trying to do the best that we can with what we know. We may not understand the same way – and it’s ok. Thanks for listening.

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