I receive a lot of posts and emails about autism now that I am getting more involved with advocating for autism research and support. The crazy thing is that you could read a hundred things about autism and not one of them will directly apply to your autistic child. That is how varied the spectrum is. That is why it is now called autism spectrum. This also means that a lot of the movements and logos and key phrases that are used to promote autism research and support don’t really speak to me. To be perfectly honest, I am sitting there looking at a Facebook post and wondering, “Why doesn’t this do anything for me?” Some of it I even instantly reject when I read it. A lot of them say, “Share if you love someone with autism!” Yes I love someone with autism…but No I do not want that awful tie-dyed image on my Wall and I don’t even get what the image is trying to say to me. Is this wrong? If I Like everything will I lose all of my followers for my Tyler’s Train page (lose some everyday! yeehaw!) and then not be able to share the posts I do actually like?
So if I am trying to plug myself into this scene, where do I fit in? I find it very appropriate that autistic individuals are so often represented with a puzzle piece. Not only are we not sure how all the pieces of what causes autism fit together, and not only is each autistic individual unique and having trouble fitting with the world around them, but as an advocator, I am feeling a lot like a piece that doesn’t know where it fits. If you read my book Tyler’s Train: A Mother’s Journey to Improve the Lives of Autistic Children on Barnes and Noble, you will find out that I have a very personal and unique viewpoint on this whole autism thing because when I learn more about Tyler’s autism, I end up learning just as much about myself (yikes!). So perhaps I am having difficulty understanding the jargon and perspective of most caregivers of autistic individuals because I am not like most caregivers. I am probably on the other side of the fence.
Where do I fit in all of this? How do I maximize what I am able to do in my autism advocacy when I barely have time to do life? How do I express my views on how an autistic individual sees the world when I only suspect that I might actually have a pretty good idea? How can I explain to anyone what it is like to see the world from a completely different perspective? I have all these ideas and words and images in my mind but 98% of them become trapped and never find their way out. How does one adequately describe that blue is not the same blue that another sees, and then how do I describe the difference?
I have decided that I am going to be water poured onto a beach. The beach is autism advocacy and all the people who are a part of it. The ocean is autism. As I am poured onto the sand, I am not going to fight and say this is the path I am going to take. I am just going to take the path that seems right…the path that is open to me. This path may change, or split off, or hit a dead-end and be forced to turn around and go another way. But I am going to let the path that is available be my guide. If something I am doing is failing again and again, I will pick up those pieces and move on to another avenue. If something succeeds, even for a little while, I will give that my attention.
This is a big leap of faith for me. All through college, I would pray, “God, please show me what I am supposed to be doing with my life?” Never got an answer. But thinking back, I don’t think I paid close enough attention to what I was failing and succeeding at on a daily and weekly basis. I liked working the science labs, but I didn’t like the theory behind it. I should have noticed that I was more into the type of work you do in a lab than the actual science itself.
Now I am going broad scale with my plan. If I am feeling more effective when writing lots of blogs but maybe not selling anything on my Tyler’s Train Etsy store, maybe I should use this to re-evaluate how I can contribute to autism advocacy. I am excited about posting some scenic and architectural pictures from the family on the store in the next few weeks, but if it isn’t working soon after that, I probably do not need to invest as much time into that as I do other options. If my book does really well and sells lots of copies, maybe I need to consider writing another one. If I only sell the 6 copies I have sold so far, maybe I need to translate that into constructive criticism as to how I am able to make contributions.
I am hoping that as time goes by I will slowly work my way down the sand and finally make it to the ocean. It is there – really touching autism in its elusive, raw self – that I hope I can maximize my ability to affect the quality of lives of autistic children and adults. Maybe then I will finally have some things really figured out and I will be able to summarize into words just what it means to have autism. Some way to say it that I actually believe is a good summary or representation. One that people who do not have autism can see and understand. That there is this HUMONGOUS person inside the body of an autistic individual, who pays attention to you, and loves you, and who sees (not necessarily hears) the world very much the way you do but in a way so, so much more. This person that you will never see because they are trapped behind a locked door. They can be screaming the words, I love you! but you will never hear them out loud. Autistic individuals are the icebergs of the ocean and there are so few people who are able to dive down and really see what is underneath – the part of the person trapped their whole life under the cold waters.
A lot of what I see right now is stuff like, “It is okay for you to stare at me because I am not paying attention to you anyway.” and “I am not ignoring you, I am waiting for you to come into my world.” From what I have learned and experienced, the truth is that autistic children ARE paying attention to you. They are extremely visual and probably see everything that is going on around them. But you have to look at it from their perspective (again as I understand it from my own experience). Let’s say you saw a particular person on a regular basis. This is someone you really like and really want to interact with. But every time you see them they call out your name and you look over. Immediately they begin talking to you and something inside of you freezes up. You desperately want to talk with this person and respond to what they are saying but your mouth is sealed shut. You know what you want to say but nothing comes out. This person is trying not to show that he/she is becoming more and more frustrated and hurt, but you are very observant so you see it anyway. By the time you walk away from the conversation you are extremely frustrated to the point of it being painful. You have failed to have a simple conversation with this person and hurt his/her feelings and that is the last thing you wanted to do! After awhile you see this person and start to dread hearing them call your name. Then you get to the point when they walk by and you immediately become extremely absorbed in the first thing you can grab off your desk. Soon you find yourself sitting there with your head down and staring at the pencil you are obsessively spinning so that it looks like you are actually really interested in this pencil and an image of your son spinning a toy and not responding when you say his name comes to mind. Oh damn. If Tyler looks up, that means I will start a conversation with him. And that means I every time I get him to respond to me, I am placing him into a very frustrating position. So he is paying attention to me, but he is not going to look up if he isn’t comfortable with the idea of entering into a conversation with me because that is an expectation I have been placing on him every time. We are very blessed that Tyler has greatly benefitted from his speech therapy and now will look up and have conversations with us. But not all the time, and I know a lot of autistic individuals are not going to look up ever…not because they are not paying attention to you, but because they cannot handle the burden of entering into an extremely frustrating situation that results in hurting someone they love.
Argh…I am getting very emotional and frustrated as I am writing this because I want so badly to find the words, or the image, or the thing that will “click” and then I will know that I have succeeded in showing a non-autistic person what the other side of the fence is really like and just how important this issue is for autistic individuals and the people who love them. How this is not a five year thing, or a 15 year thing, or a school thing, or a relationship thing….this is their life. Every day, every second, every interaction…this is their life. Therapy helps, maturing helps, experience helps…but the earlier you start, the better. And the more you do, the better and the more you realize you are over your head and need help. But how can you not do more for your child?! Even if you don’t know how you will keep from being fired, or pay the bills, or keep from going bonkers? A child you love trumps all of that. Welcome to Bonkersville! I am your new mayor.
This is my journey and it is just beginning. I am still so lost and confused and desperately wanting to be effective. And to be a good mom. And to be a good wife. And to be a good employee. Probably never in one day will I be all of these things. But this is where I have to sigh, relax my shoulders, sigh again, and chant softly, “water on the sand, water on the sand, water on the sand.” I don’t even feel like I can say, “I’ll get there,” because in my heart I am saying, “We’ll get there.” One thing is for certain, if I get to the end of this journey and I haven’t brought anyone along with me, even part of the way, that I would have done something seriously wrong.
I am trying to make my blogs be applicable to lots of people in their own unique situations. However I do want to share more about myself and my journey, so I wanted to get these words written down in the blog. I am not very good as sharing myself in person and a lot goes on in my mind that the people in my life never see because I too become trapped inside. This blog is also my journey from inside to outside…a way for me to hopefully, finally learn how to tear down some of the walls I have been trapped inside all of my life. I hope there was something in here that you can use in your own life (either as, “oh that was good!”, or, “oh I don’t need to do that!”).
(C) Rachel Flinchum 6/27/2013