When we started off down the road of finding out if our son has an Autism Spectrum Condition (I’ve decided I prefer this term to Autism Spectrum Disorder, which implies there’s something wrong with him, which there isn’t) we did a lot of reading about Asperger Syndrome and ASC. You don’t have to do very much reading to find out there’s a genetic component, my understanding is that if someone is on the autistic spectrum, the chances are that a family member of theirs is too.
Now nobody in our family has a diagnosis of any ASC. But I have long wondered if one of my brothers is on the spectrum. As a layperson he ticks a lot of boxes for me, very intelligent, not so great at social interaction, in particular he seems uncomfortable around more than a couple of other people at a time. OK, so that’s not an exhaustive list but I feel a little uncomfortable going into more detail incase it turns into a rant about all the things about him that annoy me (let’s face it, all family members annoy sometimes, and one’s that are clearly operating to a different set of rules to the rest of us can be a little frustrating to cope with at times, for the record I also greatly admire him). Also, a friend of mine brought the question up with me after meeting him and her sister has Asperger’s Syndrome, so it’s not just my opinion. I’ve never brought the subject up with him, because I just cannot imagine how to drop it into one of our rare conversations and I can’t see how my mentioning it would “help” him at all.
I also watched a documentary (can’t remember what it was called, a BBC one, recent) where they discussed that everyone is on the Autistic Spectrum. It’s just that, a wide spectrum, with very few people at one extreme having no autistic traits, very few at the other extreme having a lot of autistic traits, and most of us somewhere in the middle, with a few traits (if the phrase makes sense to you, it’s a classic Bell Curve). But having a few traits is normal and doesn’t mean you get a diagnosis of any ASC. How many traits you have to have before you fall into the category of diagnosis seems to be a bit subjective and also may depend upon how well you’re coping with them.
Well, when you start reading around the subject then you start noticing Autistic Traits everywhere. It’s a bit like suddenly noticing pregnant people when you’re pregnant, or all the cars around that are the same model as your new car. For me in particular, I then started noticing possible traits in my mum. For instance, as a teenager, I was surprised by my friends talking about how her mum had gone out with her friends recently. After all, mum’s don’t have friends do they? Mine certainly didn’t, there were people she talked to, but not friends that she met up with. I’m much less certain of my lay diagnosis here, but then again I understand that Aspergers can be much harder to diagnose in women.
So far so vague, I’m sitting there picking out possible traits in family members, I’m not sure if this is just due to raised awareness / having such things on my mind or if it’s to subconciously shore up the case for a diagnosis for my son in my head.
Then a couple of weeks ago my husband asked me about when I close my eyes when I speak to people. This is something I’m only vaguely aware of. I’m not sure how long I’ve done it for, I can’t even remember when I found out, I know that someone told me, maybe when I was a teenager. And I’m not aware when I do it. But apparently I sometimes shut my eyes when I talk to people. Which I must admit must look wierd, but it’s not something I feel able to do anything about, and it doesn’t bother me much as I’m not aware of it so I don’t think about it.
He was asking in relation to the children, because apparently I tend to do it when I’m cross with them, and then he can’t give me visual clues that he thinks I should calm down, or catch my eye to get me to let him have a word in edgewards. He also says that sometimes when I open my eyes and then they’re not where I expected them to be (because they’ve moved when I was talking and I couldn’t see that) that seems to make me cross.
I started to try and explain that I’m not aware of it. But I realised that it was more than that. If I just shut my eyes for a bit, surely I should be aware of jumps, as people have moved, a bit like when strobe lights flash on and off. And I don’t. I’m not only not aware they’re shut, I’m also not aware that there’s a break in my visual input. So it’s not just that my eyes are shut, it must be that my whole visual input to / processing of the visual in the brain must be temporarily turned off.
And then it hit me. It chimed with what I’d been reading about sensory overload in people on the autistic spectrum. It chimed with what I’d come accross about stimming being a way of blocking out senses that are too much to cope with. I got a wrenching feeling in my gut and everything inside my head twisted sideways slightly.
When I write it all down it doesn’t make much sense. It sounds like I’m saying that I think my brother may have Aspergers becuase he doesn’t talk to me much and I’m now wondering if my mum does too because as a teenager I didn’t hang out with her friends. In particular what I’m saying about me doesn’t make much sense, partly because I’m not quite sure what I think I’ve worked out.
I don’t know what I think about me. I’m kind of a functioning member of society (I say kind of, this blog was started because of my mental health issues after all) whose managed to do things in the past, like get a degree and hold down a job (not that any of that means someone doesn’t have an ASC). I’m also aware that part of my worries about my son are because I remember having a hard time at primary school, being a book worm, knowing all the answers, not fitting in, getting teased, having no friends. I still often feel that I don’t fit in, I have a little niche carved out, but I’m certainly not typical. And I’m still really bad at taking over conversations and talking too much.
What I mean to say is that revelation (for that’s what it felt like) that I had really shook me up, really upset me. And I’m not quite sure why. After all, I’m very positive that if my son does get a diagnosis, it’s not a problem, he is how he is whatever any medical professional says, the difference I hope that a diagnosis would make is to help change the world around him a little, so others (school, family, etc) make a bit of the effort to accomodate how he is rather than him having to make all the effort to fit in with the rest of the world (and I’m pretty sure he’s making a huge effort and that’s part of the reason he gets so tired and has the tantrums). I’m also quite happy theorising diagnosis for others. But for me. For me it’s upsetting. The recognition that maybe I have some strong ASC traits turns my world upside down and churns me up inside. And that doesn’t seem like a “nice” reaction. After all, if I really am all for equality of worth of people with ASC what’s the problem if I need to adjust how far along that spectrum I place myself? Does my reaction show up my hypocracy?
I’m still not sure I’ve managed to explain why it felt like such a big deal, but believe me it did. I was really upset and shook up. And then in the days to follow it gave a lot of fuel to Bitchface/InnerCritic, to point out every little piece of behaviour that might be “aspie”, to judge all my interactions with others and find them failing, to point out that I’m probably coming accross as really strange and annoying to whomever I’m talking to.
So I did what I do best, I tried very hard to ignore it and hoped it would go away. I have thought that I should write a blog post, but I never seemed to get further than that thought.
And tonight, tonight I think I’m trying to sort out all my emotional baggage and get it stored neatly away, for tomorrow we get to meet the educational psychologist.
So, after I wrote this post I had the idea of doing an internet search on “talking with your eyes closed”. I guess I thought I might find some medical explanation or something, or maybe have it as part of a list of symptoms for something. Turned out to be a big mistake. The search turned up people asking about why others do it on discussion forums. The general opinion seemed to be that the people doing it were wierd, looked stupid and felt themselves superior. I may well be wierd and look stupid, but I certainly don’t feel superior. Anyway, lots of food for Bitchface/InnerCritic/VoiceofDoom.
If you’re thinking that I have a bad case of melodramatic hypocondria brought upon by over exposure to the internet, don’t worry, Bitchface has that one covered too, big style. (Her ability to beat me over the head with contradictory arguments knows no bounds).