Sunday, 4 November 2018

My saddest case: helpless 10 year old child with ASD/PDA/ADHD

The story of Bethany has been in the news recently and even Parliament are at last asking questions about the treatment of children in Acute Treatment Units (ATU). It reminded me of something that really upset me last year:

I was asked to assess an in-patient on a mental health ward in an NHS hospital: a 10 year old boy with diagnoses of ADHD and ASD. We'll call him Paul. Paul also had many signs of PDA, although this hadn't been explored further. He had been at a special school for children with ASD, where he had been getting on reasonably well for a while but his anxiety levels had been rising. One weekend his melt-down at home had resulted in his mother feeling at at total loss as to what to do and she had been persuaded by her partner to call the police.

A child who is having a meltdown is not able to be reasoned with, they have moved beyond any basic reasoning plus.

  • A child with ASD will not be able to understand reasoning at the best of times as it's  a higher-level language skill, never mind the worst moments. 
  • They may not have any idea that you have to adapt your language or behaviour for different people in different situations, so even when calm, will not see that they need to be 'respectful' to the local policeman who walks through the front door.
  • They may have sensory issues which means when that policeman fails to reason with them and decides to remove them from the situation, they will automatically react in a defensive  manner

Then, they're in the secure ward 'for their own and others' protection' because no-one really knows what to do. This was 'just for the weekend'; in Paul's case.

Paul was scared, worried about  his mother, still angry (because the initial problem was still there and his sense of justice is huge), in a strange place with strange people; so how is he going to react? Will he calmly listen to reason, apologise profusely or will he more likely go into self protection mode? Just like a cornered, terrified animal would! How will this change when he is just 10 with no idea of what is happening, why he's there, why he can't go home to his mum, why he can't go to school.

The demand avoidance meant that he could not do as they directed while appearing more socially able than he was. He could also use language to try manipulate those around him and if that didn't work he would try to shock them into getting what he wanted.

Go forwards 3 months and I walk in:
Paul had nothing but a TV with no remote, as that's a potential weapon, and a settee. The ward was just a room with a wall of glass where the staff could observe at all times. The nurse told me he'd been been smearing faeces over the glass and remained unmoved when I said I couldn't guarantee not to do the same in the circumstances after 3 months. Look what happens on Big Brother or I'm a celebrity when people are watched continuously, and they choose to be there!

Paul is sensory-seeking in an environment where there was no sensory stimulation. He had taken to satisfying this need partly by hitting the top of his head, so he now looked like a small Friar Tuck with a bald patch, he also hit his chin so had developed sores all along his jaw-line.

The other very effective way of getting his sensory needs satisfied was to provide the guards, oops sorry, nurses, to tackle him to the floor and the best way to do this was to poke any visitors in the eye. This resulted in 2 large, burly men pinning him to the floor where he then laughed manically because he had his sensory needs satisfied. This had gone on repeatedly so was a cycle of behaviour which was keeping him there. They didn't see him as an anxious 10 year old boy with needs, they saw him as a demented Damion character who was dangerous and must be contained.

They allowed me to go in to see him but weren't happy when I asked Paul if I could sit next to him, I introduced myself and  we started to talk about what he liked to do. He told me he loved football, trampolining, x-box games, school, playing tag, drawing, painting.... pretty similar to any 10 year old boy to be honest .......only he had been denied any of these for months!

After ten minutes, he (probably) wanted to get out of the situation and tried to poke my eye, I moved my head away so he just scratched my face and I calmly reminded him that I wasn't there to hurt him and that I would be polite and kind to him so would be grateful if he could do the same. One of the nurses tutted because he thought I was mad and the other said if he moved towards me again I'd have to leave. I moved to the other side so he couldn't see my scratched face, so we could move on but five minutes later he tried to poke my other eye. He was then on the floor, pinned down and I was bundled out of the door.

The staff weren't to blame as they didn't understand him, they were all agency workers who don't normally even work with children, who were doing their best. The saw him as a dangerous, deranged creature who called them names they'd never been called before, never mind from a  ten year old. The way they described him showed they didn't see him as human in many ways. They had no training on ASD, PDA, anxiety or sensory needs.

His poor mother was helpless to do anything. Representatives from residential schools came in to assess him but were given the  same warnings as me, so didn't go in and decided  they couldn't meet his needs.

I attempted to discuss how I saw the situation but quickly became aware that they were not interested as they were temps. I wrote it in the report instead. Although I had done what I'd been asked to do, I felt as if I'd failed him because I couldn't get anyone to change their views. I felt my ideas were seen in the same light as if I was proposing witchcraft!

He ended up in a ATU.


3 comments:

  1. It's just absolutely heartbreaking Libby. Bethany's case has been in my heart since I heard about it and the frustrating thing is I don't know what to do to help. I feel helpless and angry as very few people seem to even care that these vulnerable young adults (or children in 'Paul's' case) are being treated in this manner. It's just brushed off, or ignored. It's painful to read about and painful to see people's lack of understanding (both public and some professionals). I sometimes think, there by the grace..... Well done for trying to help Paul and no turning your back. An ATU; how is that going to help..... #nomorebethanys Jayne x

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  2. I so wonder where this little boy is now. My heart is aching for him, I find it hard to believe how people can be so cruel. I think the lack of understanding from the staff is in part a lack of caring. They’re there for their own survival, I get that, but their lack of empathy still makes me angry. They play their part in a faulty system, so are not without blame as I see it. Like soldiers following orders, they chose to be there and CAN still question authority if they feel that what is happening doesn’t seem right. If they choose not too, well...
    I hope the increasing awareness of what is going on with these ATU’s etc will bring change. Thank you for writing this down and sharing your experiences! xx

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  3. What a heartbreaking story. I have no words. Mental health is such a difficult and complex problem, and certainly shouldn't be dealt with by temps who do not have the proper training and expertise.

    Your post was added to the BlogCrush linky to get it some more exposure. #blogcrush

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