Why I Want to Start Talking More About My Autism Diagnosis
Throughout most of my life since getting a diagnosis, I have kept it to myself. The only exception being in the year or so after it happened when I was around 9, when I told a number of people. By the time I started secondary school, it was something I did not tell anyone. A lot of the time I was not even certain if some of the teachers knew. I never discussed it with any of them. I also have no idea if things would have really been any better or worse if I was more open.
One of the main reasons that I did not tell anyone is because I was certain they would not understand what it was anyway. Throughout school, I always got the impression I could have told them I had any number of conditions and it would have meant the same thing to most people, even the staff. I also did not want it to be obvious I was different. I wanted to try my best to be an “ordinary” person and hope that no one took any notice.
Another fear for me was people seeing me in a certain way after I told them about my diagnosis. Because of the lack of understanding I have already mentioned, I thought that perhaps people may just have some kind of cartoonish, exaggerated impression of what I was like. The trouble with all this is that it was quite clear I was not the most typical of people. I did have a fair few friends throughout my time in secondary school and am still in vague contact with some of them to this day. I was still quiet, though, compared to a lot of the other people there. When I was in a lesson without anyone I knew well there, I would deliberately sit on my own. I was also never really entirely integrated into my own age group. I did get on with a lot of people, but on rarely more than a casual level. I was also lucky in that I never did anything to upset anyone, so even the people I did not talk to seemed to think I was OK.
In some ways, it is hard to see how it would have made much of a difference at that particular time in my life. It is probably quite true that a lot of people around secondary school age would not have understood very well. Although I have not yet discussed whether it would have made a difference with staff or teachers. To this day, I do not know how much they knew about my diagnosis. No member of staff or teacher directly referred to it in my time at secondary school. I am sure, though, that they must have been given some kind of documentation, telling them everything they needed to know. Whether all of them read it is another matter.
It is unfair in some ways to give heavy criticism, though, because for the most part my journey through school was fine — nothing more than fine, but still fine. I think it could have been better, but then again I am only one person out of hundreds there, some of whom had a lot more to deal with than me.
Going past secondary school, my diagnosis is still something I rarely talk about. I even think twice when putting it on application forms, but just about manage in the end. When getting on with people more recently in my life, it is still something I tend not to talk about. The reason for this is the same as it always has been. I do not want to confuse people or make them see me in a certain way. Rather than telling a lot of people I know directly, I have started doing a lot more to try and raise awareness in a general sense. This is both through writing articles like this, and also supporting awareness events. I do not think this is something people understand well enough in a general sense for me to feel entirely confident with telling people when meeting them or shortly after. I do think that progress is being made, though. This is something I am quite pleased about.
Eventually I like to think I could easily tell anyone about my diagnosis and they would then know how to treat me. This would in turn make everything a lot easier, because it would explain a lot of the things I do that I cannot help. This includes an occasional lack of eye contact, reluctance to talk depending on the time of day and a difficulty with understanding cryptic behavior and language. I hope that perhaps people will be able to help me with all of those things. This is when a lot of new doors would open and I would finally be able to do all of things others can manage to do. It is going to take a long time, though, but I am glad I have found ways to get this to happen.
I think that one of the key things I need to learn is that I am not “broken,” I am simply running differently to everyone else. I have now got to the point where it is easy for me to help myself, but it would be excellent for others to be able to help as well.
One thing I am going to do more often when meeting people is perhaps try to be more honest. If I find myself getting into a conversation, it may be something I add in. There does seem to be a slight bit more awareness these days anyway. So perhaps all I would have to do is explain a few things that could help and let it go from there. The reason for this is because as much as this condition make me who I am, and I am happy being as I am, I do feel removed. The way to remedy this then is to carry on trying to raise awareness on a general level as well as being more honest. It is something I am going to find quite difficult, but it is something I am prepared to attempt.
We want to hear your story. Become a Mighty contributor here.
Thinkstock image Everste