Saturday, 28 May 2016

Why our children must be listened to.

My son is diagnosed with autism, with a profile of Pathological Demand Avoidance.

To the untrained eye (actually, to the majority of trained eyes too) he appears neurotypical. His level of control over himself, with people he knows and people he can sense are observing him in a professional role, is outstanding, but it does him a real disservice, as I may have mentioned before.

Once out of the spotlight though, he is a different boy. Whilst he can be very eloquent, he has great difficulty expressing himself. Facial expressions which look so natural in school will disappear. He looks flat, or as someone so kindly pointed out "he's got the eyes of a serial killer". (Erm, ok, thanks for that!) Any expressions are very exaggerated, and not natural at all. When angry, he looks like an angry bull, steam emerging from flared nostrils. So extreme are his features, we often assumed he was joking (big mistake).

A run of bad days will leave him feeling exhausted and very low, seeing no way out of feeling like this. During these times he will express a desire to kill himself, and will demonstrate how. He will also draw pictures depicting him dead and, finally, happy.

This is something that concerns us. And to be honest, if it didn't, I don't think we would be fit parents.

CAMHS have interpreted this as normal behaviour. On PDA boy's discharge letter, it states that these episodes happen during meltdowns, which isn't true, but I'm willing to accept that my own communication problems have meant misinterpretation. These episodes happen, chillingly, when he is low, but calm and rational.

We have learnt to recognise when PDA boy's mood is spiralling downwards, and we will now take actions such as taking him out of school for a day or two (with approval and understanding from our GP). We will have time where he is in complete control of what he does, which sometimes means walking barefoot through puddles (him, not me!), lying fully clothed in a shallow river (I swear this boy is like a dog - cold muddy water is something to be enjoyed, warm clean water may as well be molten lava for the extremes he will go to avoid it), doing handstands for hours on end, sensory activities that serve to bring him back to a mood level that he can cope with.

To school though, taking him out is unnecessary, they believe that sticking with it should be the way we tackle things. This is not something we are willing to do though.

By allowing the boy some space, time when he can be himself, not the boy he is in school, we are recognising that school is a difficult place, we are respecting his need for a break.

By recognising when our son has had enough, we can, to some extent, prevent these low moods from taking over, and in absence of professional support, we must continue to do so.

But we don't make the decision to take him out lightly. If we didn't allow our son time out under these circumstances, would he be pushed into more and more alarming behaviour?

Whilst from school's point of view, this could be seen as a good thing, they may finally see some behaviour, after years of sighing that they just can't see it. He may then be offered some support.

From our point of view though, knowing our son well enough to be able to track his moods with increasing accuracy, our fears are that by not listening to him, his behaviour may escalate. His demonstrations of suicide may become more elaborate, may end up in an actual suicide attempt, may end up being successful. Ok, maybe this won't happen, but as the parent of a volatile child, I'm not willing to take that risk.

Should his needs in school be met more effectively (even though they can't be easily seen), he may not need these recovery days. This is what we are working towards. Communicating his needs so that those around him may start to understand.

Until such time when his diagnosis and difficulties are understood, we, the people who do understand him, will carry on advocating for him and make decisions to protect him and try to keep him mentally healthy.

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