Advice

I spent the morning at my local children’s development centre which is conveniently at the end of my road! I was invited along to a course run by an organisation and the course was called “Behaviours that Challenge”. It got off to a good start because 1) the receptionist returned my lost sunglasses to me that I left there at my last appointment and 2) there was tea and biscuits!

It was really full compared to other courses I’ve been on, I think there were about 30 parents/carers altogether. I was hoping to find out some techniques on dealing with Thurston’s main behavioural problem areas which are violent outbursts and screaming. I was disappointed to discover that the only information to be had was the same old Autism advice of routine, visual aids and consistency. From the start of Thurston’s diagnosis, I have always felt like “routine” has been suggested to us almost as a ‘prescription’ for how to deal with Autism. There seems to be no understanding from anyone in the healthcare profession that there might be another way. All children with Autism are completely different just as all children are different, so I don’t really subscribe to this ‘one size fits all’ approach.

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My aim is to help Thurston to cope in a world without routine, because life doesn’t have a routine. Events get cancelled, people get sick, we move house, people die, we get invited to places at the last minute, the weather isn’t what we expected etc etc. You simply can’t plan for everything and where does that leave an Autistic child who has put all their trust and understanding into a routine that cannot be disrupted? However, the aim of this course seemed to be to coerce these children with challenging behaviour to live within a rigid routine where they know exactly when, how and where everything will happen in the hope that this will limit their frustrations and difficulties. For example, the course leader suggested if your child hates the supermarket to shop online. If you apply this theory to everything the child dislikes then surely the child will end up very isolated and the anxieties will get worse.

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Having spoken amongst ourselves as parents and carers, it was obvious to me that there is no one specific technique that works to ‘fix’ these behaviours. All we can do is try and think outside the box and come up with solutions that work for our own children as we are the ones who know them best. I mentioned a new habit of Thurston’s which has only happened a couple of times but caught my attention which is that he licked the metal fly on Alex’s zip. Obviously, this is just a sensory issue and the taste of the metal is the goal of the behaviour. The other parents recognised this immediately which made me smile as I listened to other stories of kids licking peoples’ boots on the bus and another child smashing up bricks to try and eat them. The sensory issues can be truly bizarre! The course leader quickly fixated on the fact that the zip fly was in Alex’s crotch which she decided made it a ‘safeguarding’ issue that needed to be stopped immediately. The use of a sign hanging in our house of a picture of a pair of trousers with a red cross over it was to be the solution to his ‘inappropriate touching’. This just showed me how people organising these things are missing the real issues. There was nothing suspicious or inappropriate about his behaviour, it just happened to be where he could find some metal. I remember in the early days Thurston lifted his top to show his keyworker his tummy and instead of being impressed at his knowledge of body parts like I was, she told me I shouldn’t be “responding to that kind of behaviour”.

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I find it really saddening that people attach connotations to things that these kids see as natural. No one appears to be trying to see the world from their point of view. Sometimes, I feel it is ok to laugh at these things. I might wait until he leaves the room or he can’t see me, but it’s not a bad thing to be lighthearted or see the funny side of Autism. I asked him the other day if he liked somebody and he said “no”, when I asked him why he said “she’s a d**khead”. He didn’t mean it, he doesn’t think that, he just liked that word, and if I’m honest it was so hilarious!!

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I think that it is possible for an Autistic child to exist in a world without strict routine and that’s what I am striving for. I know it might not be right for everyone, but it is a possibility I’m sure. I never want to limit Thurston’s access to new experiences. I want him to be able to roam free and enjoy everything he wants to.

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The worst part about the course was listening to other peoples’ experiences. The majority of the parents/carers had older kids, mostly teenagers. I do struggle with the ‘glimpses into the future’ as it is just so unknown. Everyone had such horrible problems; their kids were breaking their parents’ bones with violent behaviour; kids were self harming; some teenagers had a phobia of using the toilet. It was so scary, but scariest of all was the fact that none of them were getting the simple help they needed. There seemed to be an agreement amongst us that the help and training goes to the school system and not the families which definitely needs to be changed.

I came away feeling a bit deflated and none the wiser about coping with Thurston’s aggressive behaviour which is a shame, but it was in some way comforting that we are not on our own!

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