We hear it a lot these days how children are being wrapped up in cotton wool or about the helicopter parents who can always be seen hovering near them, structuring their day including their playtime and never looking away for a second. Child experts say that it’s creating a generation of adults being ill prepared for the challenges of the world.
Now imagine an autistic adult being treated like that. Oh sure, I hear you with your ‘but it’s understandable, they don’t understand enough about the world and do require extra help.’ I agree to a point. See I was that over protected child. Not long ago I felt like I needed it because being autistic I was behind many children my age but even those with special needs need to grow up and acquire skills to help them navigate throughout this world.
Those skills were not learned while I was young. I have this suspicion that I was just expected to just get it when I was old enough. Maybe I was to pick it up from my peers. When I left home at 25 to live with my sister I was suddenly thrown into independent living without having the slightest clue about what I was to do, so naturally I had a breakdown. In the autistic community we call them shutdowns, they are commonly known as nervous breakdowns. Triggered by extreme anxiety both the body and brain shutdown, slow down, as if one was recovering from an epileptic seizure but there is lasting damage to the brain and recently acquired skills are lost. It’s happened to me about three times. How I am still alive is beyond me and every time I have had to build up lost social skills and even had to learn how to take things less literally. But there have been changes that I have not overcome or don’t think I ever can; I’m less coordinated, my previously internal meltdowns are as loud as the planes that fly overhead my Inner West home and my emotional regulation is completely out of whack.
But still I go on. I feel like I’ve spent a lifetime on the disability pension. A few years ago I developed PTSD and every kind of anxiety you can think of, and probably those that are yet to be discovered. I have depression too but I can survive the most agonizing day of depression more than I can get through another panic attack. Both feel terrible but both I have to deal with in order to continue living. Sometimes I mean that literally.
I’ve overcome a lot between the ages of 26 to 29 and I’ve still got much more to overcome. The latest was being too afraid to go to a music venue after some helpful fellow thought it was a good idea to grab me by the arm and tell me to stop taking photos. I couldn’t stay out in the open after that so I went backstage and filled up on cans of beer from Darren Middleton and Guy Pearce’s rider. Yes, I was working with them that night and had every right taking photos of them. It was both the best and worst night of my life. Then I took about 3 months off taking photos of bands because of the panic attacks I had every time I tried to leave my house. One of my friends wasn’t happy about that, said I bailed on them one night while I was shaking uncontrollably on the floor, the door knob just feet away from me.
It’s not always been that bad for me and there have been times where I’ve just wanted to go out and live a life as normally as I can, even get a job just to see that I can, but this is when various members of my family have reminded me that I wouldn’t be good at that job or I couldn’t cope with it. It’s not just about jobs but owning my own house or living in a share house, studying something like physics, script writing and even photography online (hint hint).
Yes, it happened to me recently about two courses I wanted to study. One was the most part-time course you could give a person that involved learning script writing at NIDA. I went through all my usual preparations at such a big change in my life. I budgeted my money, planned a good way to save more money so when the fee was taken out of my account I wouldn’t worry about going broke and starving to death (quite a common worry with me), and I even got familiar with my new bus route. Then I was told it wouldn’t be right for me, that I couldn’t handle it. I was heartbroken and the next person who told me the same thing got a rather agitated reaction from me. I even began to stutter and the words just wouldn’t form into sentences. That’s also a very common thing to happen with me.
One of these people, ok my sister, suggested I look for a TAFE course on script writing and photography and even though I was still upset they didn’t believe that I could manage myself in a short NIDA course I went along and looked up the courses. I actually got a phone call from Open Colleges when I put my interest into the Professional Script Writing course and had a chat about what I wanted to get out of the course, but it seemed my plan to get work after the course might not have been the best path to take. Then it was recommended to me to take a photography course, so I considered it. The next time I saw my sister she again said that it might not have been right for me. I wasn’t just heartbroken but depressed. My other sister that I yelled at the night before was already on board with the idea – yelling at someone really does make them try to take your point of view a bit more seriously. But still one sister didn’t think I could handle it.
Their concern was understandable (even though a few years ago they denied I had any medical or mental problems) but the worst thing you can say to an adult with autism is that they won’t be good enough. It’s funny that there was a time where I would have loved for people to take my impairments seriously and now that they do I want them to lay off. I might have difficulties but I’ve had them for almost 30 years, and I’ve developed new skills and overcame many obstacles just to get to a place where I finally feel ready to study those courses that will give me enough knowledge and confidence to launch my career, finally.
I’ve been unemployed for a very long time that I’m actually over doing nothing all day but playing video games or watching TV. There were some attempts at becoming the next best Science Fiction author but I stopped taking that medication and the mania is gone and now I realise that’s probably not the best way to write. I got a lot of encouragement for it then but people didn’t realise what was going on in my brain at the time and it wasn’t healthy. I went through a down period after that and people wondered why I was not pursuing the writing or the photography or anything. This was when people denied I had any problems, it was also when I almost OD’d on Ritalin.
Now they deny that I’ll be able to manage doing a full on course of study. It’s funny to me because they are pushing me in other ways. Take flying. I’m terrified of flying on planes. It’s not so much the flight that worries me, but the airport and the breaking of my routine and being away from the sanctuary that is my house and going to a place completely new and alien to me. In other words I’m scared of change. They tell me I’ll probably be ok, some even say I’ll get addicted to travel. But you know what? This Certificate in Digital Photography is me getting on a plane. If they think I’ll be ok flying to another country then they’ve got to let me take risks and do something they don’t think I’ll be able to manage.
about three times. How I am still alive is beyond me and every time I have had to build up lost social skills and even had to learn how to take things less literally. But there have been changes that I have not overcome or don’t think I ever can; I’m less coordinated, my previously internal meltdowns are as loud as the planes that fly overhead my Inner West home and my emotional regulation is completely out of whack.