I was diagnosed with Autism at about the age of 5, which is the average diagnosis age for the condition for many, although some do go undiagnosed through life which is a very unfortunate circumstance that can lead to problems down the road. My form of Autism is Asperger’s, although as of 2013 Asperger’s is no longer diagnosed specifically but has been merged into Autism as a whole, so it now an outdated term, although still widely used, basically it is just high-functioning Autism and is now called ASD or Autism Spectrum Disorder. I also have Selective Mutism, and so both Autism and Selective Mutism together severely hampers my social side.
I also have dyspraxia which is a lifelong condition that effects physical coordination and can make doing certain activities more difficult and also make me a bit more clumsy or appear more clumsy in some of my movements.
Selective Mutism itself makes me extremely anxious around new people or people that I don’t know that well. The Selective Mutism has been better and worse throughout different points of my life, in Primary School it wasn’t too bad after a while but in Secondary School it got really bad. It is a social anxiety condition that can be managed and some can even overcome it completely but not everyone, mine is certainly still there but I have got a lot better, but I know if bad situations arise again it can easily get worse.
Autism though, Autism is forever and never goes away or changes, you can still learn ways of coping or put things in place to help manage it, but it will never go away as it is a lifelong condition. Autism makes it harder to communicate with people and makes it hard to perceive social cues and emotions. It also makes it harder to understand things, such as in education and I may need things to be re-worded or explained in a different way for me to get it. It also makes me uncomfortable in new or different situations or if my routine is changed. I have a very specific day-to-day routine and I can get extreme anxiety or saddened if it changes, coping with this includes being forewarned of change and also training myself that sometimes things change and I have got better with this aspect, but the frustration can still happen.
My Autism also means I have very specific interests and disregard for things I am not interested in. Within my interests I may repeat activities regularly, such as one is making lists of things, putting things in categories or making a huge list of capital cities over and over again for no particular reason, listening to the same songs over and over again, normally certain movie and TV soundtracks and watching the same programs again and again, for example I have watched numerous 9/11 documentaries dozens of times. I reread the results of things such as elections over and over again. Stuff like that.
I am obviously very different socially, I absolutely despise small talk and find it extremely boring, I also hate making eye contact with people as it makes me very uncomfortable and I also don’t find many things funny, the only time I really laugh is from my own humour (yeah, super biased) and the odd meme I come across on the internet and certain youtubers and Twitch streamers can also make me laugh from time to time, but that is basically the extent of it.
My sensory nerves are also much more sensitive, for me it is my hearing, I can more easily hear things that others may not be able to, which used to be distressing when I was younger and still can be sometimes. I used to also become upset by loud noises such as the fire alarm at school, but luckily that side of it isn’t as bad as it was when I was younger. I have a constant static-like noise in my ears, not sure if that is related to this, but I have always had it and I’m fine with it, it does not bother me, I actually thought it was normal until recently.
Despite this I went through life as a kid and through Primary school without even really knowing anything was wrong with me and thinking things were normal and everyone else experienced it as well. Things didn’t really start turning on their head until I reached Secondary school and from then on it was as I have said before a big battle with the Education Board to get me a statement and allow me to go to a Special Needs school.
Perhaps the statement is something that should have already been done, but I believe my mum wanted to first see if I could make it through mainstream schools… I did make it through Primary School quite fine so there was a fair chance that I may also make it through a mainstream secondary school. But it was all much bigger and all much more hectic and complex compared to the nice little easy-to-understand Primary school that I went to.
I was constantly getting lost in Secondary School as I was unable to remember the routes and ways to the classes and then that made me worry that I would end up getting detention or something through no fault of my own. The place was just so much bigger. There was also bullying from many kids there as they noticed I was quite different from everyone else, mostly the quietness that accompanies Autism and the unwillingness to make friends.
The Secondary school I went to did have a special unit for kids who needed to be more slowly integrated into a normal time table but for me it just didn’t end up working, none of the teachers in these classes I was integrated into understood the difficulty I had understanding the work they were putting in front of me and some of them would even get frustrated about why I didn’t talk as much, one particular teacher was a drama teacher at the school who got so annoyed with me being quiet that he made me write in my planner that “I must learn to speak”.
My mum was obviously furious at this and marched right up to the school the next day and let’s just say that they got the message. After that incident I spent a day off school to calm myself down from the complete audacity and boldness of the teachers humiliating actions. If he had understood Autism he would have known having me write down that ridiculous sentence in my planner was both a waste of note space and ink from my pen as it would only serve to make me close up even more.
After continued stress from bullying, teachers impatience and generally just having extreme anxiety at the school all the time I could no longer take it and a statement for a Special Needs school was pursued as I took a year and half off of school, which at the time was great for me, but it really did damage my educational prospects I believe, but there was no way I could handle any longer. The Education Board was unrelenting, despite having diagnosed Autism they made it as difficult and hard as possible to get a statement, requiring multiple appeals, mess arounds and a solicitor before finally getting a statement.
I spent a couple of test days in year 8 at the new Special Needs school I was going to which was much smaller and simpler to navigate, I never got lost there and the teachers were far more understanding and everyone else was much easier to get along with, there was no bullying. I fully entered into this school at Year 9 and stayed there for the duration, my grades weren’t great but I was at least happy and comfortable being around people more like me and being in an environment more suited to my needs and I eventually opened up and started talking.
It was one of my happiest times and I was very sad when it finished and had to go on to college, of which I have previously stated also didn’t really work out for me as it was once again bigger and different and there were many people who didn’t really know how to handle my problem again and there were a lot less people to be in common with unlike the Special Needs school. So, I completed two animal care courses (nearly dropping out of the second due to a mental breakdown) and was done.
I think the thing I wish the most is that there was more support for people with Autism once you get into higher education and that there was even more support right from the diagnosis, which there wasn’t, me and my mum were kind of just left in the dark on it all and took us a while to get to places we needed to be at, wasting valuable early time.
It is only now as things stand that my sister has found some things that can support me and also my brother with Autism, working and later life and hopefully into independent living.
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