Thursday, 25 July 2013

ATOS and what the professionals should really be told about Aspergers.......

Yesterday was a prime example of what it’s like living with Aspergers. My son awoke to find he had no internet connection and as the day wore on his temper got worse and worse and he became more and more frustrated. You see ,he had planned to go online with his friends and he couldn’t. Everything I could say or do to pull him out of his depression made the situation worse until his response to anything I said had descended either to a swear word in reply.or thumping loudly around the room in defiance.

I recognised the signs , it was  time to walk away. He followed me into the kitchen, took out a kitchen knife and ‘pretended’ to cut his shorts and his legs with it. Having been there before the thing then was to decide how to de escalate his anxiety. Fortunately my tustle with the bread knife was quick and without incident so he obviously didn’t intend to use it. but either of us could have been cut. Cue to hide all kitchen knives away AGAIN.

I was taking my daughter and friend to town so suggested he come too and we would go and see his gran. Fortunately he agreed and got into the car, head in hands.

 Having dropped the girls off we went to grans and he sidled into her front room without a word, before sitting down for five minutes. As conversation turned towards the internet he began to become more distressed, stood up and walked out onto the street where he sat on the pavement out of view of mum’s window. Five minutes later I followed him into the street and sat with him for twenty minutes or so and was then allowed to massage his scalp to calm him down.

He finally allowed me to pull him up and usher him back into the house where gran (bless her) had a film on standby which he started to watch, enabling me to shoot off and get my much needed shopping and pick up the girls.

To anyone reading this who doesn't have an autistic child this may sound shocking, it may sound like I’m being blasé, but I’ve decided to share our story as this really is happening in many families across the UK and things need to change. As a family we have found out the hard way that there is no emergency help – in fact there is no help at all.

 Autism is not a mental health condition so the children’s mental health service (CAMHS) don’t want to know. The trouble is there are no Autism specific support services either  so you end up with the wrong help which at it’s worst can be more damaging than if you hadn’t been in the first place

. That’s why I choose what services I want – it’s not that I don’t want to help my child I DO but I want long term support for anxiety before he ends up with mental health problems not some ‘quick fix’ from which you are discharged after six weeks. Aspergers is a life long condition   – it doesn’t just ‘go away’. If you manage it well you can lessen the impact and help adult autistics to live a much happier and stable life style.

 They may not always to be able to work – it’s not that they don’t want to. It’s just that there will be times when it all becomes overwhelming and they will just need one less thing to deal with so that they can handle their anxiety.That’s where the ATOS assessment for working capability has been going wrong. A person with Aspergers may seem to function well one day but may struggle  the next. You have to take it day by day. And as for today – well we will just have to see.It doesn’t bode well. The internet isn’t working again….


  1. Hi and a smile to all of you from over here. That mild little word 'de-escalate' covers such a big set of hard won skills.

  2. Doesn't it just. I think the thing is to just "Keep Calm and Carry on" LOL!