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Tiny Tyger, Baby Bear and Me: May 2015

Saturday 16 May 2015

Am I Autistic?

My family have joked about getting my mum a t-shirt with the words 'I See Autistic People' printed on it.  You know, like the whole 'I see dead people' thing in The Sixth Sense?  I don't know how popular that film is these days - does that reference need to be explained or is it still obvious?  I'm not really good at keeping up with popular culture.  You know what: I feel like that film gets a bad rap these days.  I still like it.

Nineties Bruce Willis films aside, after my sister received her diagnosis my mum started to analyse everyone she knew for signs of ASD.  It's not uncommon.  I find myself doing the same these days and I'm sure other people do it too.  There are people like my dad who - once you know about ASD - are obviously autistic (I don't think he'll mind me pointing it out).  Back when he was a child they didn't diagnose such high functioning individuals so he has no official diagnosis but there is no question about it: my dad is as autistic as my sister.  However, there are also a lot of people - especially in my immediate family - who have a lot of autistic traits but not enough or not intensely enough to actually be on the spectrum.  Or far enough along the spectrum.  I'm not sure if the spectrum starts at 'neurotypical' and goes all the way along to severely autistic or if the spectrum only starts at the 'just about autistic'/Asperger's point.  Maybe I should look into that.

My mum has pointed out some of my ASD traits, as has the Wolf, and I've noticed others on my own.  I thought it might be worth sharing some of them.  I'll start by introducing you to the sort of...oddness I displayed at the age of four (imagine the Wayne's World style wibbly wobbly effects as I take you into a flashback if you like).  When I started school my mum was concerned about her daughter fitting in and asked me who I played with at break time.  I told her I didn't play with anyone, I just sat on the wall and ate my apple by myself.  Poor Mum was distressed by the thought of me having been bullied or shunned but it turned out I chose to distance myself from the other kids at this time every day because you can't eat an apple whilst you're running around and apparently those other children were 'silly'.  Yes, at the age of four I thought other children wanting to run around and play at a time that was clearly better suited to sitting and eating a healthy snack was 'silly'.

Want to know another adorable, not-at-all-creepy thing I did as a child of a similar age?  I'd go up to strangers - mostly little old ladies - at the meat counter in the supermarket and say, 'You shouldn't eat dead animals!'  Oh yeah, I'm vegetarian.  In case that hadn't come up before.  That's kind of important to the whole anecdote...maybe I should have mentioned it first.  Anyway, I have no idea where Tyger got his social inappropriateness from...

Oh, and the reason I had an apple at break every day was because the school had a 'fruit only' policy on break time snacks and apples were pretty much the only fruit I'd eat.  Sooo, I might moan a lot about Tyger's fussiness with food but I'm not the easiest person to cater for, myself.  I'm a vegetarian who doesn't like onions, tomatoes, peppers, aubergines or leeks (and that's just the beginning).  Considering most restaurants seem to think people only become vegetarian for the love of these particular foods, eating out is difficult.  There's a mix of taste and texture issues, I'm sure.  I haven't really given much thought as to why I don't like certain foods, I just try to avoid them as much as I can, but I'm pretty sure it all counts as a sensory problem.

Another sensory issue I have is sensitivity to sound.  I don't mind having reasonably loud music on if I'm not talking to anyone or doing anything more than perhaps reading or messing around on the internet (basically, my 'hobbies' pre-kids).  But as soon as someone tries to speak to me I want all background noise to be way, way down.  The Wolf used to put a film or something on the TV whilst also playing on the computer and then would also talk to me and I wanted to shout at him, 'What are you doing, you maniac??  Why are you assaulting our ears like this?'  And after a film finishes when you're at home, why doesn't everyone immediately turn down - or preferably mute - the sound once the credits start?  It's like a physical presence.  Don't get me started on the hell that is the sound of someone sweeping concrete!  Gives me goosebumps just thinking about it.  And as for speaking on the phone...well...

I hate making phonecalls.  Hate, hate, hate it.  And if I do have to - you guessed it - I don't like to have any background noise.  It's to much; I can't cope.  Why do I hate making phonecalls?  A bit like the whole food thing, I don't tend to think about the why but here goes.  I don't like talking to people when I can't see their expressions and body language; I don't like the fact that most phonecalls come with some sort of expectation (even if it's just knowing when I'm available for an appointment); I don't like the fact I might not be able to understand what the person's saying due to a bad connection, someone talking to quietly or quickly, accent etc., I don't like the fact they might ask me something I don't know the answer to.  It's mostly just not being able to see them.  I don't know why that makes such a big difference but it does.  And everyone having mobile phones has just made it so much worse.

I get social anxiety when I see people face to face as well, though not anywhere near as bad and generally for different reasons.  I obsess over whether I've said something offensive or inappropriate.  I'm constantly worried I've upset or offended pretty much everyone I ever have contact with, actually.  'Oh, Christ, when I asked how their day has been did it seem like I was being nosy?  When they asked if I'd like a cup of tea were they actually just being polite and were pissed off when I said 'yes'?  What if they were upset when I complimented them on their hair because it sounded like I normally think it looks shit??'  Even in my relatively reclusive existence there are plenty of these moments a week (or day...).

And talking of being obsessive...I get obsessed with all sorts.  There are the obvious things like TV shows, films, books, music but luckily, the Wolf - who is almost certainly further along the spectrum than I am - is also pretty obsessive so we often get obsessed together.  But then I also get obsessed with certain foods and will eat the same thing repeatedly.  Or I'll get obsessed with a topic and google the frak out of it for several days (at university I once looked after a friend's pet rats for a while when she was away and at the time I was an expert on rats because I looked up every single fact I could find about them before taking on that responsibility).

I also have some physical habits/ticks/whatever.  It seems I wipe my hands on my shoulders (the same shoulder so left hand on left shoulder and right on right).  I didn't know I did this until one day at high school I commented on the unusual level of crumbs I seemed to get on my shoulders and a friend explained why.  I absent-mindedly scratch the back of my neck to the point where it becomes scabby.  I also have a habit of pushing my fingers and thumbs back away from the nails because otherwise they feel sort of uncomfortable.  I thought this was a normal thing until I mentioned it to my mum once...it's apparently not normal.  I assume the fact I sometimes lick the tips of my fingers first for a better grip when doing it is even less normal (I understand fully if you no longer feel comfortable reading my blog, knowing how odd I actually am).

This is the tip of the iceberg.  No doubt - if my mum or the Wolf read this - I'll be asked why I haven't included the fact I have to have the eggs laid out symmetrically in the egg box and am more likely to buy eggs in boxes of 15 to more easily facilitate this, or the fact I often talk too loudly (especially on the dreaded phone), or how I'm really particular about clothing because I find so much of it uncomfortable, and so on.  I have quite a lot of ASD traits, is what I'm getting at.

So, you're probably thinking, 'but I get obsessed with my favourite TV show,' or, 'yeah, loads of people hate certain sounds,' or, 'I know some fussy eaters.'  And that's kind of the point of this blog post.  It's why it's so hard to answer the question, 'Why do you think Tyger is autistic?'  Every trait I mention could apply to loads of neurotypical people.  It's the sheer number of them, the extent of them and - probably most importantly - how much they affect day to day life that makes it ASD rather than a few quirks like everyone has.  My noise sensitivity means I get a bit irritated sometimes and I find it hard to focus when I'm in crowds.  I don't get so overloaded I can't move or I start screaming or sobbing or rocking.  My food fussiness means I have to be extra nice to restaurant staff so they're more likely to agree to modify a meal for me.  It doesn't mean I only have five foods I'll eat every day and I'll go into meltdown because two foods on my plate touch (though, I'd rather they didn't.  Come on, who wants their beans to touch their mushrooms??) or that I'll only eat pasta not only plain but also dried with kitchen roll so it's not too 'wet'.  My obsessions can be controlled - they don't control me.

Am I autistic?  No.  I have many traits but I have seen how ASD affects someone who has it and I am nowhere near that.  I can empathise to an extent but I have not lived it.

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Sunday 3 May 2015

Am I Labelling My Son?

A couple of conversations I've had recently have made me consider the issue of whether seeking a diagnosis in young children for things like ASD, ADHD, ADD etc. is 'labelling' them and should be avoided if possible.

I think parents worry because there's still such social stigma surrounding autism (I'll talk about this in terms of ASD just because that's what Tyger is being assessed for but it could easily apply to other disorders) and they don't want their kids to be pre-judged.  From my extensive research (by which I mean browsing on parenting forums and reading blogs) I'm guessing there are three types of judgement they're worried about.

Firstly, there's the 'Maybe we won't invite the autistic kid to little Jimmy's birthday party in case he flips out and brains one of the other kid's heads on the slide because that's the sort of thing they do - even though I know they can't help it, bless them - and I also hear they multiply when you get them wet so best not to bother' brand.  Basic ignorance.  Not necessarily malicious but obviously damaging all the same and when it's your kid not getting invited to parties even though you know fine well he's never smacked another kid's head off a slide, I imagine it's heartbreaking.

Secondly, I'm sure parents are worried about other children and how they might treat a kid diagnosed with autism.  Kids pick on each other because they wear glasses, are overweight, have the wrong clothes etc. so why add a shit load of fuel to that already potential bonfire?

Thirdly, there's the king of moron who thinks (or if they're incredibly rude morons - which is a common subset of moron - actually says) something about how diagnoses of autism has risen along with a decline in discipline and nine times out of ten supposed 'autism' is just an excuse for bad parenting.  I won't bother explaining why that's a really stupid and uneducated viewpoint to have because that's a blog for another day and if you have that particular opinion: 1) there's plenty of articles and other people's blogs on the subject on Google, 2) you're probably not open to changing your mind because of pesky 'facts' anyway and 3) why the hell are you reading my blog?  Frack off.

The thing is: getting a diagnosis doesn't make your child autistic.  Sometimes it seems like parents of undiagnosed kids think of them as Schrodinger's Aspie; like until an actual diagnosis they both are and are not autistic.  The truth is if they have ASD, they have it whether or not they actually get diagnosed.  I could decide not to get a diagnosis for Tyger in case it affects the way people see him but he'll still obsess over hoovers to the point where he cries when a hoover advert comes on TV because he 'needs' it (yes, that happened), he'd still give any stranger who walked in the house a hug (whilst naked) and scream when they left because they're his 'best friend', he'd still refuse to eat any food with blemishes, he'd still start up a long wail to drown out other noises he doesn't like, he'd still want plain spaghetti for every meal every day...and people notice these things.  He doesn't have a diagnosis but that doesn't change his behaviour and without an explanation they may write him off as 'weird' or 'naughty'.

And I think the same goes for other children.  Children are not stupid.  They recognise when someone is 'other' and, yes, unfortunately that someone is often punished for it.  But children also aren't necessarily cruel - as much as the saying indicates otherwise - and whilst some will pick on the 'weak' they will do that whether a child has a diagnosis or not and a diagnosis might just make some of the kinder kids more understanding and sympathetic.

That covers other people but I'd guess parents also worry about what the kid will make of it and whether it will make them feel ashamed or upset to know they're autistic.  My sister was a teenager when she was diagnosed with Asperger's so she fully understood having it made her 'different' and may open her up to a load of bigotry and ignorance from other people.  She was - and still is - at an age when social acceptance is a top priority for most people.  But far from being upset by the diagnosis, she was relieved.  She's a smart girl: she already knew she was different to most other people and she found it baffling.  All the diagnosis did was explain why she was different; why she was obsessive and anxious and struggled in social settings.  It also - importantly - meant she received a whole new level of support at school.

I have experienced something similar, if not as pronounced.  I'm not on the spectrum (at least not far enough along it to be diagnosed) but I do suffer from depression.  It's not the same thing but it is afflicted with a lot of the same social stigmas and misunderstandings as ASD.  When I was actually diagnosed with depression I was incredibly relieved.  Relieved because it turned out there was a reason for the way I felt other than because I was the human equivalent of Marvin the paranoid android and it wasn't my fault.  I know one of the big differences between depression and ASD is depression can be treated whereas - as yet - there is no treatment for ASD but there is at least support available (especially for the school years) and simply understanding there is a reason you are the way you are is pretty powerful on its own.

Some people favour the 'wait and see' approach to diagnosis.  If the suspected disorder isn't a current problem or it's at least being managed at the moment they don't see the point in going through the - admittedly often long - diagnostic procedure when it won't actually change anything.  I get that.  And I get that not pursuing a diagnosis isn't the same as not doing anything to support a child's needs.  I guess, after watching my sister go through most of her schooling without anyone realising she was autistic, I'd rather be proactive.  Right now a diagnosis would change nothing for Tyger and even once he goes to preschool after the summer it's unlikely to change anything.  But once he starts at school he may need extra support and that support may only be gotten if he has a diagnosis.  It seems inevitable to me he'll struggle at some point and I want to have already done as much as I can before then so any help he needs can be accessed as soon as possible rather than having to wait for months - or even years - before we even get to the point of discussing what extra support can be put in place.

And nobody needs to know.  There is no onus on a parent (or the child) to tell other parents or friends or family members or strangers in the supermarket about the ASD.  But if you decide things will be easier for your child if certain people do know, that option is still there.  And it's certainly nothing to be ashamed of.  I'm not about to write a Disney song all about accepting yourself for who you are or anything but if you suspected your child was short-sighted you wouldn't avoid getting it looked at just because wearing glasses might get the child teased.  ASD will continue to be viewed as something to be ashamed of if we continue to act like it is.

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