21 August 2009

He's not naughty, he's got autism

I have just had the dubious pleasure, or rather the unsolicited challenge, of being offered child rearing tips in a supermarket.


I employ the word challenge as said advice was aimed in the direction of Midget 1, and specifically my handling of his behaviour. Midget 1 (herein The Boy) is a 5 year old blond beauty, big for his age, a marvellously funny boy full of personality and vim, who also happens to be autistic.


As a family, myself and the children are well known in the area. I imagine that is this is partly because I can regularly be seen waiting for Midget 2 to arise, phoenix style, as a well behaved child after she propels herself to the ground, screaming of how ill her lot in life is in the way that only a 3 year old girl can. It might also be that I am often heard long before I am seen, singing songs, reciting long lists for The Boy to remember about that day's schedule, inviting both Midgets to join me in counting as a calming measure. No doubt many of them have been witness to The Boy's excellent dog impressions, or a reaction to over sensory stimulation, be it an odd noise, a particularly bright light, or that he is just having a 'bad day'.



We are lucky to live in quite a small town, that narrowly misses being a village by virtue of the fact that it has a supermarket and a shopping centre of sorts. The majority of the people that live here are good, decent, tolerant and kind to all comers. The town itself has been described as many things by visitors over the years but in itself, although not perfect and desperately underfunded, the lack of services are made up for by the tolerant people.


Normally, when I need to do shopping of any kind, I go alone whilst both Midgets are at school. It means that all three of us are saved a great deal of stress, them in having to tolerate it, me in having to remain calm whilst trying to keep them calm.


The Boy hates all shops (unless it deals solely in toys, naturally) but he particularly dislikes supermarkets. It is a sensory overload as I imagine those of you with children on the spectrum can empathise with.


Today, with the summer holidays still in full effect and The Boy only willing to drink one particular brand of apple juice (which luckily is also the bribe used to attempt to enforce good behaviour whilst out shopping), there was no choice but to visit our local supermarket.


Now, this isn't one of those huge, built by the side of a motorway type of supermarkets, but the sort of one that is essentially four times the size of a corner shop. The majority of the staff in there are slightly older ladies, who empathise with both my struggle to remain calm, but, most gratifyingly, with both Midgets' attempts to do so, but particularly understand The Boy's issues.


Thus they will always take time to try to distract him if they can see he is getting agitated. These ladies could become child wranglers such is their skill.


They are so decent that they have taken time to find out about his autism, asked me how he should be spoken to, what they can say to him. They go out of their way to make the experience as pleasant as possible for all of us.


They all know of his condition as, when the initial process of diagnosis was started, I would blurt out, with a lot of aggression at the first look I decided was 'funny', that he was disabled. I later discovered that these were, in reality, those looks of mixed sympathy and admiration that we all give when we see someone handling a difficult child in a public place, remembering the panic we feel or felt when doing it ourselves.


When I had calmed down and was able to talk about it properly, after I had read and wept copiously over 'Welcome to Holland' (http://www.child-autism-parent-cafe.com/welcome-to-holland.html), when I realised that this was still the same beautiful and maddening little sod he was beforehand (although these are all tales for another day, or another blog), these people were willing to help someone who was receiving very little emotional and practical help, and they wanted to learn and help us.



Which is why I was quite surprised when, whilst queuing at the checkout and The Boy started a (slightly rough but vehemently affectionate) game of kissing with his little sister, the woman behind the checkout regarded me, poe-faced, and asked me "Do you think you should do something about him? He's really hurting her there you know."


Fair enough thought I, and as I didn't think he was being naughty or acting out of turn (I was doing 'that' side eye watch, the one that all mothers are taught as we are being stitched up after the birth), I responded, in a voice that I hoped conveyed 'thank you for your concern, but I rather think it's none of your fucking business', with "No, I think they'll be ok. Midget 2 can give as good as she gets, she knows Midget 1 is disabled, and if she was unhappy with it, she'd soon let me know."


This should have encouraged her to stop speaking, at least one would have thought so, but apparently her mouth was enjoying itself so much at this point that it wasn't going to stop, possibly ever.


"Well," she told me, as she narrowed her eyes and composed her face into the physiognomy of a bulldog chewing a wasp, "I know he's disabled, you're always saying, but he looks normal to me and you let him get away with murder. You should watch yourself or social services will be round."


I gaped at her, open mouthed, for a full two seconds. Both Midgets, as if tuning in to a special extra sensory psychic connection, fell silent and started to behave perfectly. The people behind me in the queue shifted uncomfortably, and an odd hush appeared to descend on the entire supermarket.


There are ways to approach people like this. You can shout and swear at them. You can ignore them. Personally, and this is merely my preference, I like to embarrass them. But I like them to think I have ignored them first, it gives me the element of surprise.


I continued to pack my shopping, and paid the bill. As she gave me the receipt, I grabbed her wrist and looked her straight in the eye.


Now, you may not approve of what I said, but I believe it got the message across clearer than anything else I could have done.


I said to her, still holding her wrist and whilst keeping eye contact; "My son is disabled. Whether or not he is 'normal' by your definition I wouldn't know - I certainly hope not, I wouldn't want him to be. You look 'normal' to me, but you're clearly not by the way you speak to people. The reason my son acts in a way you don't consider to be normal is that he has autism - tell me, what's your excuse?"


With that, I dropped her wrist, gathered the Midgets and sauntered out of the shop.


ASD related conditions are so common now, but some people just don't want to learn about it. Try not to judge them, in a way it is their disability, and their disability has not enriched the world the way that those diagnosed with autism have.


If your child has a recent diagnosis and you are struggling with other people's reactions to their behaviour and you do not feel ready to tell them to piss off, the National Autism Society do a great range of t-shirts and badges inscribed with the legend "I'm not naughty, I've got autism" :
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=102&searchstr=i%27m+not+naughty+I%27ve+got+autism

2 comments:

Andrew said...

Brilliant! Well done. We've encountered the looks, but not so much of the comments when out shopping with our son. He doesn't like shopping centres & supermarkets either - we're thinking of encouraging him to use his MP3 player to mask the babbling.

Andrew

Karen Wiltshire said...

Thank you, Andrew.
Yes, I've heard a lot of advice in relation to the use of an MP3 player. I have every confidence that he would become louder, singing loudly along and encourage more 'looks' (which I am now confident enough to deal with!)
Someone also recommended using those headphones that they give children at festivals (though why the f*** you'd bring a bloody kid to a festival!).