What Autism is like for me
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People who do not understand autism really frustrate me. They don't understand autism, yet when you try to explain it to them, they dont want to listen either.
It is really important to say that autism affects people differently. The likelihood of finding two people who are affected the exact same way is negligable.
So I am going to tell you how it affects me. I am going to tell you how it affects both externally and internally.
- SOCIALLY (People I know): When I meet with people I know, I am usually ok enough. I feel comfortable with them and I can talk to them. They know me and they know who I am as a person. They know that if I say something the wrong way that may be taken offensively then it is not on purpose and are more than happy to help me self correct.
- SOCIALLY (New People): In work I do force myself to go out of my comfort zone as, I want to be happy in my career and go as far as I can. I get extremely nervous when speaking to new people. The thoughts going in my head are "have I caused offence? Do they understand what I am trying to say? Am I being clear? Have I said something wrong? Should I be saying this? Should what I be saying sound more like what they are saying?" All of these questions run through my head every time. It gets very exhausting. By the end of the day of being around new people I feel like I have run a marathon. These are not the only things that happen either. It causes me to react to the people I am talking to. This means most of the time I get extremely extroverted or extremely introverted. I am neither one of the other. I am what you would call an extroveted introvert. People dont get to see this straight away because I am trying to figure out people.
- Emotions: With people I know, I am usually able to let my emotions out in a way that is safe but when I get really stressed, even with people I know, I can find it really difficult to express my emotions. My emotions come out in ways that are completely opposite to me as a person. Mine always comes out with exclaimations of violence such as "seriously I will slap someone". I am not really going to slap them but it is a way for me to get my emotions out. This generally makes people think I am a horrible person but it is how I get my emotions out.
- Twitches: When I get stressed or if I get uncomfortable my leg twitches. I may not know its happening until someone points it out to me. Other things that can happen is rubbing my legs or counting my fingers on my hand against my thumb over and over again. The final thing for me is that I start humming. People tend to see these things, but it is honestly the only thing that is stopping me from having a melt down.
- Meltdowns: Meltdowns for me have 3 stages. Stage one is where I get really hyper vigilent. Stage two is where I am visibly uncomfortable and become very introverted but I can hold it in till I get home. Stage three is where I need to stop, sit on the floor and I struggle communicating and finding help. These can have a real physical impact on me.
- Senses:I have always had issues with senses. If I am around someone who wear one spray to much of perfume it engulfs me. I feel physically sick and have to throw up. I had to become a vegitarian because I could not handle meat and could tell when my parents went from name brand to store brand products and refuse to eat them. Sound is also a problem. People screaming has a physical impact on me, the fire alarm at work gets me hyper vigilent. Honestly loud noises that I haven't selected myself is a big problem for me. Counting my fingers helps me cope so does headphones. I wish I had a good set of noise cancelling headphones that I could wear when I am on my own, even when I am out with friends so that untill we pass the noisy bit I have something to keep me calm.
- Volume Control:I have a big problem with volume control. Whether I am talking to someone indoors or outdoors there comes a time when I think I am talking normally but the reality is I am talking too loud or too quiet. I never hear the difference and have had people say "Indoor Voice" or "Outdoor Voice"
- Food:I dont have the traditional problem with food in that it cant touch. However, say you put Burgers, Chips and Beans on my plate I have to eat in order. I eat the burger first, then the chips, then the beans. I am physically unable to have a chip with some beans and a burger on the fork. This changes however, if you put a risotto on my plate where everything is naturally mixed together I am able to eat that the wa it is served.
It is really frustrating to me. Because of the family I come from I only really have a Partial Diagnosis. I could not get my family involved in my diagnosis because I come from an abusive family and I did not trust that they would be honest. So, at the age of 31 I got the "Inconclusive" with a line that says "in my professional opinion she is highly likely to be autistic and would benefit from the same support". This is as good as I am going to get.
I keep getting told that this is still a diagnosis because the person has put their professional opinion on the line to say that. I just wish I had a full diagnosis. Then I would not have to always have my diagnosis on hand for people to read.
If I had one wish, it would be that the medical community changed the diagnosis platform for women who were born pre 2000 to make sure they could accurately get diagnosis and help. It should be less about the early years. What if my parents had died when I was 20, I would not have that information available. What if I was in and out of foster care, I would not have my early years information. Because I come from an abusive family I did not have the information they needed. So I get penalised because I was born before the medical community realised women and girls could be autistic. It really isnt fair.
There are times when being autistic is fun, because you can focus on the things that you enjoy. I wanted to learn to code so my hyper focus comes in handy. But there are times when it sucks, meltdowns being one of the things that suck.
One day maybe the medical community will wise up, but until then, those of us who get diagnosed late in life (missed in childhood) are going to have to fight for the support we get.
I am not ashamed of who I am. I am finally able to understand myself better and I am finally starting to like myself.
My one ask of everyone is that if you know someone with autism, speak to them about it if you can. Find out how it affects them and how to support them.