Yeah, so it’s been a while since I was able to keep a regular posting schedule and it actually really frustrates me. I need to write to feel good, so you can probably guess, I’ve been quite frustrated for a while.
Starting something new is always difficult and I was fully prepared for that – or I thought that I was. Unfortunately, I was expecting that there’d be some support available at my new school to help me get through the challenging parts of school life.
I had contacted the school several times, both by e-mail and on the phone, to talk to them about the specific support I would need and they had promised it wouldn’t be an issue. Yeah, I was probably naïve to believe them.
All I asked for was someone to help communicate for me what I could not express very well myself. I made it clear that social interaction and communication is what truly makes life difficult for me and they promised that there was room for every type of person at the school and they would help with communication when I needed it.
My first conversation with my new caseworker at the school – the person who I was supposed to talk to about what I need and help me communicate – was a complete disaster.
All I wanted her to understand was that she didn’t understand what I was saying. Every time I said something, she heard and responded to me exactly like one would to support a troubled neurotypical child, but for several reasons it didn’t work with me.
First of all, I am not normal. If you treat me like a normal person, you will break me. I hate when people tell me I shouldn’t say “I am not normal” because people only say that when they, either consciously or subconsciously, believe normal to be better than not normal.
I would never and have never thought that I am less than others just because I am not normal, nor have I ever given anyone that impression on purpose – they may have thought so, but that’s their business, not mine.
It is a thing normal people think and say all the time, but normal and not normal are not words that hold value except for the one we ourselves attach to such words. I will say this again, because it is the most important thing I can tell you right now: Treat me like I’m a normal person and you will break me.
I can accept that normal people treat me like a normal person, because hey, they are normal and are simply doing what they always do. They often don’t understand what the tiniest differences in their approach to people like us can do – a little difference can be like a miracle to someone like me.
Isn’t it funny that normal people both expect to treat everyone else like they think is best, but at the same time, they insist that others should treat them how they want to be treated?
In any case, when it comes to someone who is supposed to help me and support me, I want to be treated in a way that helps me. If the person I talk to can’t even understand that I am not normal and that they will hurt me more by treating me like a normal person, how can they help me convey this to other people who need to know it – people like my teachers at the school?
Secondly, I am not a child. I am an adult. Yes, I don’t understand a lot of expressions and imagery, but that doesn’t mean I should be talked to like you would a five-year-old. I simple want to be treated with at least a little respect. I also don’t understand hints and social cues, but again, this does not mean I need to be treated like a small child.
All I ask of the person who is supposed to help and support me, who gets paid to do so because it’s their job, is that they treat me with respect.
When I say, “I am sorry, I am not good with so much imagery when you speak. Could you maybe use less because it makes me really nervous?” I want them to say something like: “No problem. I do it a lot in my daily life, so if I do it again, please remind me again. I will do my best not to do that with you.”
I don’t expect them never use such language again – they always do – but I do expect them to be somewhat aware of it and that they are prepared to help me out when they do.
When I ask someone to say things clearly, I need them to say things clearly and not “sugar-coat” things, like neurotypicals say. I need clear and blunt statements that clarify my situation. The thing that actually makes me anxious and worried is not understanding something.
Bad news doesn’t scare my, I am atypical – I am used to all kinds of discrimination and bullying – no, clarity brings me calm, uncertainty messes with my head and slowly breaks me down over time.
Anxiety is a part of my daily life, yes, but people can’t help me deal with that in the same way normal people deal with these issues.
This person I was talking to, I think I’ll call her Miss Wannabe, she listened to me talk about how anxiety was not controlling my life and how I had found a way of living with it (I was trying to clarify that I don’t need help with a lot of the things she had just stated she could help me with) and she interrupted me and started explaining that anxiety is fear without reason.
She told me the story people often tell about tigers, fear is when there is a tiger and anxiety is when there really isn’t a tiger, but we feel like there is. She kept going on and on about how I can’t let my anxiety control my actions and that I have to understand that there really is nothing to be afraid of.
In the end I had to stop her and I said: “I know all this. Why are you explaining that I cannot let my anxiety control me, when I just told you that is not an issue?” I repeated an earlier example I had used to explain this the first time and only then did she understand.
She was quiet for a while and then: “Oh right. I you guess you did.”
A few moments later, she started talking about the tigers again.
There are several things wrong with this tiger nonsense. As you may remember, I don’t understand imagery and I find the idea of using an example like this ridiculous and pointless. It only adds confusion to me, not clarification. If there is nothing to be afraid of, then say it just that. “There’s no logical reason for being afraid.” Simple, clear. Imagery is needed for neurotypicals, generally not for someone like me.
Furthermore, there is a logical for this particular case. I was talking about how I can’t read faces and that during online classes I can only see peoples faces and that freaks me out. The reason I’m afraid is because I don’t read faces and all I see is faces.
Moreover, she didn’t listen to what I was actually saying. I was clearly saying that in spite of being afraid, I was still participating and working on getting better in my online courses, so I didn’t need help with that. She then ignored me and started giving the help she felt I needed, not the help I was actually asking for. This was not just a one-time mistake, she continued to ignore the support I was asking for and offer only what she felt I needed.
Last but not least, even when I had clarified that I didn’t understand imagery (which I did early on because she used it a lot) and that the tiger thing was more confusing to me than helpful, she continued to use this example and similar ones during the entire conversation.
All in all, this was a horrible conversation. I won’t go into more details, but I will tell you this: I used more and more extreme examples to make her understand that she wasn’t actually listening or understanding what I was saying and in the end, the only thing she understood was that I don’t read faces. I guess that’s something.
I feel like this is common behaviour of neurotypicals. They always focus on whatever they feel I need help with and not what I actually ask for help with. It’s okay if it’s friends or family, but when I go to someone who gets paid to help me, I expect some influence over the kind of help I get.
Basically, what I need is a translator. I need someone who can listen to me when I try to express the things I have a hard time expressing, and then that person needs to be able to help me convey that to others.
I feel like they always want to help me get to class, do my homework and stuff like that, but I don’t need help making routines. My life is all about routines. I am happy when have a routine. The problem is that the tiniest thing can break that routine and then it all falls apart. Everything.
I need help when everything falls apart and in those moments, I need someone to listen and try to understand what I am saying, because the wrong help in that moment is going to take away my last strength and then that’s it. I’ll break.
I know this because it has happened before, and I have been close to breaking again several times after that – I only made it through by completely shutting down my whole life and disconnecting from every single person I knew.
The help I can get is often like a saying I heard once; They offer an umbrella when the sun is shinning and the weather is great, but then when it starts raining, they take it back.
I am still upset and even thinking about all this makes me so frustrated I feel like sitting down and crying. Not sad tears, mind you, tears of frustration and anger.
There’s one thing people always do that makes me angrier than anything else they can do, but for some reason they never seem to understand that they do something that makes me feel bad. They always say things like; “You seem normal to me.”, “You don’t seem like one of them.” – or the worst of them: “Don’t ever think you are not normal. Whatever is normal anyways?”
Miss Wannabe used the last one on me and she did out of nowhere. There I was trying to explain that I didn’t need the help she was trying to give, but that I needed the help I was asking for and suddenly she said: “Don’t ever think anything is wrong with you, no matter what anyone says.” Just like that. In my head I was thinking: Why would I think something is wrong with me? I know I’m different, but that doesn’t mean anything is wrong with me.
I told her that I never thought that something was wrong with me and she continued to reassure me – even though that only made it worse. If you don’t understand why this bothers me, try changing the words normal with something else.
Like this: “Don’t think you are fat, no matter what anyone tells you.”
What would you think if a complete stranger said that to you without any previous reference to topics like it? I can answer that. You would probably start wondering if you had gained weight recently or were indeed bigger than you thought you were. Why? Because people generally don’t tell skinny people not to think they are fat. The more people say not to worry about being fat, the more we start worrying about being fat.
People who say that I shouldn’t think of myself as not normal are generally people who, either consciously or subconsciously, believe that being normal is better in some way. Perhaps I am being too cruel – I know there are genuine people out there who want to help and that there are people, people like me on the autism spectrum, who actually think something is wrong with us and that normal is better.
Normal is not better, different is not better. It’s just not the same.
Imagine if the world only had one colour – it would be impossible to live. Colours make our world beautiful. Autism spectrum disorder is not a sickness that needs to be cured or something that makes us less than others. It’s a developmental disorder, we run on a different operating system than most other people. It breaks my heart that being treated with respect – as an equal – is something we have to fight for, not something that is given automatically.
Today was a long post, but I feel frustrated. If the help I am offered is going to be like this, then I don’t want it. I will fight on my own, survive on my own, because no help is better than the help others have repeatedly tried to force on me. You can keep your damn umbrella.