Friday, 15 May 2015

Anxiety and Autism

It has been a while since I have managed to sit down and write, little facebook posts here and there seem easier.

A few people have asked me to talk about anxiety..... here goes!

Max has always had anxiety, high anxiety alongside his autism. It is part of who he is, a worrier.
When Max was little (say 5 plus) he started to display 'behaviours' behaviours that I now know were not 'autism behaviours'
I am not a doctor and I do not profess to know everything about autism and anxiety but I do know my son, I have learnt and am still learning, every day brings something new but all that aside I understand him.

The start of the behaviours I mentioned were

Hitting
Pushing
Biting
Involuntary screaming

We just dealt with things best we could, can't say we always got it right or agreed for that matter but these were the additional struggles Max & us worked through.
Every year it was a cycle of behaviours, no help offered, no help available. We would be asked by the next new social worker who visited annually to complete their 'paper work' "Do you know what causes it??" "Do you keep a diary" "ABC charts....." (I swear when asked to fill out ABC charts...)

With Max's behaviours ( I am calling them this because it wasn't really him.... I now know it was a knock on from anxiety) we never really saw them coming. This sounds ridiculous to say we didn't realise the sudden screaming or hitting but sometimes you are so caught up trying to make things better or work out what is going on that you don't see, until you sit back and think bloody hell what happened there, or, he doesn't do that any more.

This has been the pattern throughout his years (Max is 13 now) up until last year when we were finally allocated the most wonderful professional I have ever let into our crazy world!

Rewind a few months prior, whilst having our annual social worker meeting when we were told that Max most likely wouldn't be living with us when he was 16 because we wouldn't be able to manage his anxiety & behaviours.
I did loose it slightly at that remark made by someone who had met us once. As a parent when you are in crisis and you try to get help but there is none - like EVER you learn to just get on with things. He is our son and we do the best we can. We may not always agree and we have come to breaking point many times but we get up and carry on.

I left that meeting and cried, I mean big ugly snotty crying, for hours it felt. I never get upset and for those of you that know me you will know I always try to have humour and the motto 'things could always be worse'
But that really got me, someone looking in saying we couldn't look after him. When there has never been an offer of help for the behaviours. The involuntary screaming. This took over our lives, Max would let out piercing screams, up to 4/5 times per hour. In any place in and setting!
His education was disrupted because of it. It was heartbreaking, some mornings he would get in bed next to me and from no where he would scream. He tried to stop himself by putting his hand over his mouth.

I naively thought as it was affecting his education we may get help (Max's then school was out of borough which meant our residing borough would need to get involved) it gets a bit tangled with educational psychology protocols but hey I was just glad things were moving along

I got .... ABC charts !!!! yeah great, thanks for that, anyone want to read them??? NO
A social worker pushing to get us back into child and families, I was sent an appointment with the opening sentence ' we do not offer on going support for families with children with autism, we have booked you for 3 sessions'

I declined. And we got on the best we could

So back to the to best nurse to have ever helped. He was a locum learning disability nurse (go figure) and has since left but I do write to him every now and then. Like I say he was ace.
He listened, came up with strategies to work with Max's obsessive behaviours that were ruling him & us. He really helped us,  I did give him hell when he first met us, I was defencive parent, negative parent & no one has ever helped us before parent (yes there were toys out of cot)
He realised that some of the behaviours, the pacing, not sleeping, kicking and screaming were a potential product of his anxiety.

He referred Max to psychiatry to chat medication. This was not so long after Max kicked the windows out of his school transport here is the post to that escapade!! 

In the intrim I had taken Max to his GP who felt it was out of his remit but prescribed diazepam to give Max when his pacing & not sleeping became too much for him. He prescribed this on the basis Max was recieving behavioural support from a nurse and the diazepam would not be long term.
We tried it once, it didnt help and the bottle remains in our medication cupboard. (Handy for stressed mummies ........ as if !!)

I had already been doing my homework on the types of medication out there and submersed myself in the talks of Dr Temple Grandin and her experiences of having autism and how medication helped.

Max started taking fluoxetine  in October 2014

Not lightly, even after the appointment with psychiatry we went to see Max's GP to ask him what he thought. It is a really battle of the mind you have, taking the decision to medicate your child.
The way we looked at is was Max needed a break from himself, the pacing, fingers in his ears muttering, racing heart, sweating. Ransom behaviours that I cant explain but I know were a by product of his high anxiety.

That was 7 months ago.

Has it helped?? hell yeah, massively.

Max just seemed to relax more, he sleeps better, less pacing, happier in general. His OCD type behaviours have lessened. He is able to enjoy things more, he still has anxiety, autism anxiety I call it. That will always be there - the need to repeat things and plan and talk about that same stuff over & over. The medication has taken the edge off the real anxiety. It has allowed his to enjoy things and join in on more activities and outings.

He landed himself a bit of a speaking role in his school Christmas play, better than that he managed to be in the actual play and was happy I was there. Max has never ever ever coped with assembly or concerts, he finds them really hard. He was happy.

In the past family outing were a bit of a no go as his behaviours were too unpredictable.
Over the Easter break just gone we managed cafe outings - Max's was choosing his own food, park trips, feeding the ducks and we even booked a meal out

All of us in a restaurant, he ordered his own meal.

I will sign off now with a video, a happy, relaxed boy with profound autism who managed to order his own meal and he had a jolly nice time eating it

Until next time

Martina & co xx

video