Thursday, January 20, 2011

Family on the spectrum Part 1

My step-brother has autism. He's just turned 20 and my mum and his dad have been together for a bit over three years now. He's on the low functioning end of the spectrum. Since hitting puberty he also suffers from undiagnosed mental illness - undiagnosed primarily because of inability to communicate due to autism - and has to be medicated for this. The doctors never seem to get the medication or the dosage right, so his dad has to 'play doctor' at times to adjust it to his son's needs. When too heavily medicated he will sleep all day and night making his dad housebound, he looses all interest in food (normally there's not enough food in the house to fill him up), and he becomes almost non-verbal. But when his dosage is right he is a whole different person, as has been the case in the last few weeks. At times it's a bit like having a 6ft tall 3yr old in the house. He's cheeky, says the funniest things, and wants constant attention... but doesn't know appropriate ways of getting it.

For the last few weeks every time I have seen my step-brother it has been pretty much the same scenario - his dad and he arrive and my step-brother makes a beeline straight for me to say hello and tell me a sentence or if I'm lucky two sentences about what he's done that day. Then the usual proceedings are him following me around the house trying his best to get attention and communicate but not having the ability to have a conversation. So he tends to state the obvious - e.g. "you're doing the dishes!", "that's a dog!", or ask a meaningless question where he knows the answer e.g. "what are you doing?", "what are you doing that for?", "why can't you ... [something he's been told not to do]". It drives his dad and my mum crazy because it's so constant. But it really doesn't bug me. I get it, and I feel for him. He wants so badly to communicate and have that interaction but he's not sure how. Oh boy do I know what that feels like. Not to his extent obviously, but do know the feeling.

The talking's fine, I'm happy to play along and acknowledge his statements, answer his random questions. He comes out with some pretty funny stuff at times too, and in the past week I've noticed he's been coming out with some really appropriate stuff which is awesome, e.g. asking my sister, brother and I who we barrack for when we were passing the ball around in the backyard, and asking me who I like in Shrek (I said donkey) then a few days later saying "you like donkey in Shrek". It might sound trivial, but seeing him go from barely keeping his eyes open long enough to eat a meal to this is absolutely fantastic.

There are two things that I find a bit difficult though, ironically both as a result of my own autistic tendencies. The first is the issue of eye contact. Whereas I have never felt a need for eye contact and only do it because I know it's expected (and like to keep it to the barely acceptable minimum), he has an overly strong need for eye contact. He constantly wants eye contact, and won't accept anyone talking to him without the eye contact as well. Which means I have to make that conscious effort with him more than I would anyone else, which really does wear me out at times. The second issue is that he often wants to shake hands or be hugged, and likes to get attention by tapping me (not so gently) on the arm or shoulder. Problem is I really don't like to be touched, by anyone. The only exception to that would be my three young siblings. I don't want to be mean and push him away, but it does make me really uncomfortable at times. I can usually get him to settle for a high five instead though which is pretty cool.

I've been wondering what it is that has made my step-brother sort of hone in on me lately. I'm not sure if it's that I pay him a bit more attention than most do, if it's just a primal instinct thing of knowing I'm a female roughly his age (a very real possibility), or if it's something else entirely. Maybe a combination of factors.

It amuses me that his father shows so many signs of being an Aspie. He's fascinated with trains (how steriotypical is that!), has a very literal, logical way of thinking, and is totally anal about the way things are done. I've seen him on a number of occasions have some trouble in social situations too.

My little brother also has many Asperger's tendencies. When he was younger he walked on his toes, his voice is always just a little too loud, he seems to think and view the world so differently from anyone else, has trouble controlling his emotions, is very intelligent but his grades don't reflect this, and is very often socially inappropriate for his age. Him and me either really click or really clash - depending on both our moods on the day.

Something else I find amusing - my sister isn't at all autistic, she's a great kid, a little lacking in confidence but very 'normal' for her age. There is one thing she has always done though - she hand flaps! I've never heard of a neurotypical person stimming in a socially unacceptable way, but my little sister does. She only does it at home now though which is good.

Needless to say there are constant references to the autism factor in the daily life of my family. It's not at all uncommon to hear any of us refer to another as 'being autistic' or to reflect on something someone has done with 'that's the autistic genes'. It's all in good humour. We're all very aware and accepting that autism is a part of our daily lives and that's just the way it is. So I'm not sure why I'm so scared to tell them that I actually am on the spectrum. I'm waiting until I have the official diagnosis, because somehow I feel like I need that to back me up when I tell them. As much as all of my family are affected by autism in our daily lives, I'm not sure how my mum will take the news that her eldest daughter has Asperger's. I'm also not sure that I want to tell her. Some things I need to contemplate I think.

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