Autism is not just a disability. It is also a culture. Most of us are proud autistics who don't want a cure. We have our struggles and various social constructs can be very disabling but there are good things that can come with autism like our intense interests and attention to detail.
There are two ways of looking at autism, the medical and social models. The medical model talks about all of our deficits and those deficits being our problem. We need to be fixed and have to adjust to fit in with the world. The medical model of disability is the usual way people view disability. On the other hand, the social model talks about society being the barrier to the disabled person. Society has a role in including the disabled person. Society needs to help remove the barriers and accommodate the disabled person. The social model of disability does not see us as needing to be fixed and therefore is obviously the better model!
Older autistics are paving the way for younger autistics through their advocacy. Allistic parents are learning that autism is not horrible monster that they have been told. Autistics of varying verbal abilities are speaking out (verbally or through writing) to change things not only for us, but also for the autistics who are children and adults who live under someone else's authority. Many of us are openly autistic in all areas of our lives, others cannot be due to employment or other circumstances. That situation is not the autistic's fault. It is a society which does not believe the autistic is capable, which makes the individual have to try to hide their true self.
Our intense interests can make us unique friends, valued employees, and overall cool people! Our stims can bring intense joy or a sense of comfort when anxious. When someone in the autistic community is in some sort of trouble or something terrible has happened, other autistics get the word out and our community bands together to each help in our own unique way.
I have learned a lot from my fellow autistic bloggers in the past few years. In the past, while I was fine with being autistic and with my daughter being autistic, I was just that- fine with it. Now, I have a new community which is autistic like me. A community which for the most part looks out for one another. I'm a proud openly autistic person who is proud to be part of the autistic community and I am more than fine with that!
Monday, 1 June 2015
In this post, I will let you in on the two secret projects I have been working on and also a couple of good things that happened this week.
First good thing: Typed Words, Loud Voices is officially for sale now on Amazon and directly from the publisher AutonomousPress. It is an anthology written by people who type to communicate, either all of the time or some of the time (like me). There are times when I can’t talk no matter how much I want to, and in some situations, I am getting more comfortable in passing a note to someone I trust for them to read out loud. I decided to write a piece and submit it to contribute to the book. It was accepted. Very exciting! I now have my first officially published piece of writing. I can’t wait to receive my copy of the book. People who are non/partially speaking have much to say! What was especially nice was that a Facebook friend, whom I have never met in person and who is also in the book, sent me a message telling me she liked my passage. It meant a lot to have my writing recognized by someone I admire in the autism community. Here is where I will let you in on one of my secret projects. I have been very slowly turning the blog into a book. It would be a very simple process if I could just cut and paste each post but I’m not just doing that. Different posts are being grouped together and fleshed out. Some posts will be left as is and others, I have updated wording to reflect how I think now. I have always been pro autism but some of the language and actions may not seem as much like that in older posts i.e. person with autism as opposed to autistic person. Some of my other thinking has changed also. I have so many things on the go these days, so it is taking me a long time to put the book together especially when working on the chapters that need fleshing out.
Second big thing: I managed to perform in the year end music recital. I have previously written about my singing lessons and how they have given me a little more confidence. For some reason, singing is easier than talking. If I am singing along with the artist, then I do fine and if I am singing with just the instrumental, I can do it as long as I have the lyrics in front of me. Some songs I know quite well but for some reason, if I don’t follow the lyrics, I mess up even though I know it. I’m not sure if it is a focus thing, anxiety, or something related to my disabilities. Maybe all three! It is much easier for me than having novel conversations. I can’t just go up to people and talk to them. It is even hard for me to do with people I already know- what to say?; will I mix up my words?; will they understand me?; will they make fun of me?; and so on. So many things to worry about. I have a lot of trouble with communication as part of my autism, even if it is scripted. Severe social and general anxiety disorders don’t help either. With singing, it is like an unchanging script. There is nobody to throw out a question or change sentences that you had already scripted a reply too. It is more comfortable. There are autistic people who don’t speak but can sing. I don’t know why that is in their case, but I think in my case, it is because the song is like an unchanging script. I have a very good, supportive instructor/friend. She has been figuring out what I need to be comfortable as we go along. The first lesson I had, I wouldn’t even let her look at me! I almost always have a fidget toy in one hand while singing. I came up with a series of steps that will help prepare me to speak in front of people and we have been working on those in my lessons. The final step toward that goal was performing in the music school recital. There are other adults in lessons but I have never seen them perform. Maybe because the focus is on the kids and they don’t think to ask, or they are uncomfortable, or have no interest. I figured that if I could manage to sing in front of others, it would potentially be easier to speak. I did it! It was terrifying and with the first few words, I got the weird feeling in my brain that I sometimes get, not sure what it is- possibly a precursor to passing out? My vision has gone black when that happened in the past though, so I’m not sure. I tried to keep thinking that it was just a lesson. My instructor accommodated me by allowing me to sit (pain due to other physical issues) by her while she played the piano. I didn’t have to be front and centre on the stage. I think I did an okay job. I had my Theraputty in my hand to fidget and my lyrics to look at before me. I had also made sure to write 'breathe' in several places on the page. I have a bad habit of holding my breath without even realizing it. As well, I made sure to take my Valium, but that only helps take a bit of the edge off. The performance is a little rough but it's my first one so not too bad considering. I have attached it and Micah's below.
This brings me to the second secret project. My autism consultant and I are organizing a two day autism symposium. It will be November 3 & 4, 2015 in Newmarket. It is called Autism Rocks! Let Us Move You. It is to be a positive, affordable alternative to many of the other autism conferences and symposiums which are usually research/ treatment based, costly, and put on by allistic people with maybe a token autistic or two. Most of the speakers will be autistic and the others are supportive of autistics. We will have a flyer soon so be sure to keep an eye out for it.
Those are a couple of the big, most recent things going on with me and now you also know the secret projects I have been working on. It has been very stressful working on these projects but I sure the final product will be worth it.
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