To Diagnose, or Not To Diagnose, That Is The Question.

I’ve always known that I was different. I am even more aware of it now that my nine year old son is going through the motions of an Autism and ADHD diagnosis.  As a kid I was always a loner, I never understood why it was so easy for everyone else to do things that I found so difficult.. standing up in front of a class and talking, being funny, knowing when to smile and when to be sympathetic, knowing the right way to behave, knowing the right way to eat, the right way to dress, any of it. All the simple things eluded me.

I remember following a group of girls during recess one year, I think it was the fourth grade, and they were all laughing and talking about boys… and I just kinda tagged along, I’m not even sure if I was welcome to be there. I just remember thinking so this is what it’s like to be in a group… yea I don’t like it. My actions and reactions were copied from the others, if they laughed Id fake a laugh as convincingly as possible. The popular girl was the center of attention and everything came so easy to her, her movements seemed so natural and here I was, struggling to behave in this same manner.  I don’t really remember a time before that where I was so aware of my differences.  Before that I think it was more that I just didn’t notice anything and preferred to be alone. I am sure I was picked on, but it wasn’t until afterwards that I caught onto that. And I guess my non reaction made it less fun for them to do so, so it didn’t happen that often around that time.  I like to think I was incredibly resilient, you know, bounced back from it, but it never really bothered me. I continued to be me, despite my differences, and I was fine with it. Yes I struggled, but I took pride in my weirdness, even when I was constantly told I needed to change.  Always the odd one out, and not caring much about it. I just accepted it and never caught onto social cues and all those things that people so easily pulled off on a daily basis. By the time I was a teenager I became aware of the social structure of the school I was in, and I certainly wasn’t popular. Again, it didn’t matter much. The only time there was ever an issue was if a “friend” stirred up some kind of shit, because I was an easy target, I bet.  At some point, from one school to another (I moved around a lot), my social status changed, and I am still not sure how. At a new, smaller school I became friends with the “bad” kids, which in that school were kinda like the popular crowd. So I then actually had more than one friend, but I also had more problems, because with more people there are more people that don’t like you. And that is when I learned how mean the other girls could really be. The way I saw it was that I had to counter act it with the same amount of meanness and my loner status was upgraded to rebel.  After that we moved again and this time we settled in the US.  There I spent more than 15 years. The first year or so was crappy, I was always uncomfortable but the kids in that small school were inquisitive because of not only where I had lived but where I was originally from, and my oddness seemed to not come as much of a surprise, at first. I think it was explained away because of where I had been.  And I played off that for a while, just kinda rode that wave. But by the 9th or 10th grade it wasn’t the same, I guess I was supposed to be integrated by then.. but I wasn’t.  I was still the oddball, “devil worshiper” and “lesbian” and “whore” because I was friends with the guys but continuously ignored the females… I learned before then that the females were the meanest so I stayed away as much as possible. In class I was incredibly quiet so the teachers knew me to be shy, but outside of class I basically didn’t give a fuck, friends with the bad kids again, getting into trouble, acting out.   The way I looked at school was that I knew it all, not that I was so amazing at it, but I understood the book stuff easily enough to where I lost complete interest in homework, but during test time I did very well (usually, at the very least, I passed.). And this irritated the teachers.  And it was simply that once I was outside of school any thought of work left my mind so easily, and then Id remember I had homework and stress until time to turn it in but I wouldn’t turn it in and phew the stress was gone so fuck it (rinse and repeat). Then there were some classes where I would have a paper due and not do it, but then those five minutes before class Id write one out real fast and actually get a decent grade. I was also one of the few that passed the literacy test in my 11th grade year. I knew I could do the work, and that was enough for me at the time. The fuck it attitude was a problem, Im sure, but at the time, of course, I didn’t care. Honestly, there wasn’t much that I did care about at the time. If I wasn’t out with the bad kids doing bad things, which honestly I just kinda watched most of it.. then I was at home, in my room, by myself either writing or listening to heavy metal full blast until I was yelled at to turn it down.  I had an incredible amount of freedom in those years, Id leave the house on Friday and come back on Sunday. I wasn’t given much shit about my grades but every so often Id get a lecture which never made an impact. As I write this, I feel like I am just describing a typical teenager.. because I don’t know anything else, I know how I was, but how others saw me or themselves, I couldn’t tell ya.  One thing I do know is that hanging with the bad kids put me in a position where there were no expectations, so I could be myself since they were also the odd ones out.  I am not even sure who the popular people were in that school. I knew that I wasn’t, but I also knew that people knew who I was.  I never followed the norm. I have that argumentative nature, so whenever I saw something that people expected of me, I did the exact opposite. If I felt forced or pushed in anyway, Id make sure I pushed back even harder.

I was known as cold and uncaring among my peers. Some even went so far as to call me evil, hence “devil worshiper”.  I remember that parents of my friends weren’t fond of me at all, I know now that it might have something to do with the way I just didn’t care. Manners weren’t a priority, I spoke to adults the same way I spoke to my friends. I felt that I should treat everyone the same, anyone asking for special treatment made me wonder why they deserved said special treatment. Respecting your elders wasn’t a concept I understood. Even now if someone demands respect I feel that they don’t deserve it.  Parents didn’t want me around because I made them uncomfortable. One parent in particular said that I have no soul, I am still friends with her daughter.  She, in fact, is the only friendship that has actually lasted. It got dicey there for a while, but that was rectified.  I didn’t maintain friendships and relationships because I didn’t prioritize the way that everyone else did. I didn’t call a lot, I never asked about them or what they were dealing with, trivial conversation was not something I cared for. The only reason why I have the one friend I do in the States now is because she is the same in that way.  We go days even weeks without talking and that is okay. Others are offended by that. I managed to find another friend here in Iceland that is that way also.  We see each other once in a while, but if one forgets to call the other, no one is offended by it.  So that is a comfy friendship.  There have been those times where I was called an untrue friend or accused of not caring about a person because I didn’t take the time to call and see how they were doing. But it isn’t that I don’t care about the people in my life, I do, but I just don’t talk about the trivial things. Although I am better at the meaningless jargon now a days, I can do it, if I feel like they want to then I will do that, for them. But mostly, I think if someone wants to tell me those things then they can just call me up and tell me, simple as that.  Many conversations with my family, throughout my life went as follows:” How’s your friend doing?”– “I suppose they are fine.” — “Where do they work?” — “I don’t know, they haven’t told me” — “You just spoke to them, you see them a lot, but you don’t know where they work?” — “No, it hasn’t come up in conversation, I haven’t asked and they haven’t told me.” — “You are supposed to ask those questions, they want you to be interested in those things…” — “Why? If they want me to know they will tell me…”  Something along those lines.

Of course I am better about it now, I do ask those questions when I remember to, if I haven’t seen someone in a while.  But the way I see it is this, if I want someone to know something, I tell them, and I expect the same. I know that people want you to act like you care, but I don’t see how asking those questions means you care, I feel like it’s prying. When someone asks me a lot of questions like that I get irritated. So Idk, the golden rule I guess.  Really I could go on and on, but I have kinda derailed from the point. I didn’t mean to go into such detail in those last paragraphs.  The point of this post was to basically summarize things and then go into the more recent.

So, the way it is now– I am more aware of the way I behave and what is the “accepted social norm” and the difference between them. I think that my struggles with such things are more pronounced now (or have been until now) because I have moved back here to Iceland, again, and it is all still newish. Yea I have been here over a year, but more recently I have started working and now have the kids in school.  The safety of my aloneness is not something I can resort to in some cases. I only work part time, but in those few hours I fight to say things the way I have to, and to remember to do things the way they are supposed to be done. I deviate a lot, and I forget a lot in those quick moments.  I take orders for food and there is a long line and everyone is taller than me and they are all looking at me and then things get complicated. It gets noisy and then muffled, hearing people talk is difficult, I feel like my every movement is scrutinized by those standing in wait for my assistance. I have to focus on one thing at a time or I get too anxious and then mistakes are made. Of course the first day was harder than a few days ago, and it has sort of gotten easier. But the other day things were way easier, I think that is the moment where the change wasn’t a change anymore and became part of my normal daily routine.  I still get that way though, when it gets real busy, and a bunch of pairs of eyes loom over me as I try to concentrate. I become increasingly aware of everything, everyone, the way my clothes fit becomes more uncomfortable… It still happens, but it isnt as pronounced so it is easier to deal with. It took a few months, but I got used to it. That is just the way it is with me, I guess.

But dealing with it this way, and recognizing it all now is due to my kid’s recent diagnosis and continued doctor visits, which are taking forever by the way. He is also in a special section at school for those with Autism.  And his “issues” are constantly being brought to my attention, of which I am already aware, and they are trying to help, I know that but it doesn’t feel like it. It feels like I am being told things like Im a moron. I think that is just me though, they are nice about it. I tend to take it as condescension when it isn’t sometimes.  I haven’t talked about this so extensively with anyone before.  I don’t talk about it much, I bring it up in autism support groups or if I know someone who is on the spectrum I talk about it with them.  It isn’t something I post on FB much, I post about being an Autism Mom but that is about it.  I don’t actually like to talk about it.  I think that in my adult life I have managed to hide it in many ways unless there is a change like the one I just explained. I keep people at arms length, even those closest to me, I don’t talk about things.  Writing is my only way to get anything out of my head.  I am uncomfortable in talking about it with anyone, which brings me to whether or not I really want to go through the motions of a diagnosis. Of the few people who know and I have explained this to, they tell me that I should. It is good to know for sure, I guess. And I feel that way too, but the anxiety of having to talk to a stranger about these things is something I am not sure I am willing to go through.  I don’t know if it is because throughout my life I have only received negative reactions whenever I have tried to explain things, or if it is just my nature to be so indecisive and insecure.  Mostly I have been told more that I just need to fix myself. That I shouldn’t act that way, that I do things the wrong way and should learn how to do them the right way.  When I explain that it isn’t that simple, that it isnt something that I can just “fix” then I am told that I am being negative or stubborn or something along those lines.

Then there is also the dilemma of trying to be a part of a community that wont consider me valid without a diagnosis. Autism parents are offended when someone says “I think I am on the spectrum”.  Parents of high functioning kids aren’t as judgmental, I find, but it is there sometimes.  In groups online, especially, those parents of the severely autistic say you aren’t really autistic if you are not diagnosed or if you can function better than their child. If you can function better than their child, whatever “better” truly means, I don’t know because I have functional issues.. but if you aren’t nonverbal and in diapers then you are not worthy of the diagnosis. And then on the flip side, once you have that diagnosis, then what? Then you are branded by neurotypicals as someone with an illness or a disease. Then suddenly they start talking to you like you are mentally slow and handicapped and can’t do things that they can do, they are better than you now.  Oh you are Autistic, I’m so sorry.  Oh you are Autistic, you don’t look Autistic.  Oh you are Autistic, what’s that like? Have you tried NOT being Autistic?

I know that a diagnosis would help in ways, such as my anxiety, my panic attacks, my inability to deal with the easy yet stressful situations. I can handle things that others cannot, and yet I can barely make it through something that is easy for others.  So perhaps, if I do go for that diagnosis, and there is a way to get any help I might need, then I can get it. But I also feel like once there is a diagnosis I will then be judged only by that diagnosis, and not by who I am. I can ignore judging and opinions of others, but when it comes to finding work, and things that really matter, how will it impact me? But then, how can it make things better? I am incredibly torn about this. I know that on some level I truly need it, but at the same time I feel like I have made it this far without it. But what if I had been diagnosed as a child? What if what if what if… things would be so different now, that’s for goddamn sure. At this point I am waiting, only because of financial reasons. There are ways to get help to get the diagnosis, I am aware, and once I make a decision I will get that help, but right now, as I said I just don’t know which is the better choice.

About DruJoKat

Autistic, mom, writer, poet, science enthusiast. Just trying to survive in this world made for the extroverted typical brain.
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3 Responses to To Diagnose, or Not To Diagnose, That Is The Question.

  1. Natalie says:

    This is an amazing post. I guess all I can really say is, thank you (:

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