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.


Thursday, 1 November 2018

How we use low arousal techniques to support a person with autism and Selective Mutism

Guest post by Rachel Tenacious

Low arousal can be used with any person who is having difficulties meeting the expectations of those around them as far as I am concerned but it works especially well with people who need to be in control of their life as much as possible as a way to keep their anxiety at a manageable level. Demand avoidance is a reaction to fear, facing scary situations all day every day is too much for any person, when a person is demand-avoidant it is their way of stopping the world just for a short time so they can breathe.

Our lives are full of demands but many of them can be avoided with a bit of skill and determination. When H was 5 we were told she was controlling us and we have been told this many times over the last 11 years and guess what, yes she is and yes she does but not for the reasons that most of  the so called "professionals" were suggesting. H controls her world because it is very scary. Speaking away from home became scary for H sometime after she started school and this was when she stopped doing it. We believe that she tried asking for help by crying at school but her voice was invalidated so she stopped asking.

Removing H from school allowed us to give her a break from the massively demand heavy environment that she was in every day. Learning about low arousal has helped us to give H a voice and to allow her to live a life of much lower anxiety levels.

The first and most important thing to remember is something first written by Ross Greene who wrote "The explosive child" he said "Kids do well if they can". This is the root of everything!

Before we can genuinely improve that lives of people like H we have to properly understand that. We have to remove blame, we have to believe that the person who is struggling is not making a choice, we have to have a good understanding of Fight, Flight, Freeze and most of all we have to think outside the box.

Living a low arousal lifestyle is completely different from anything else we have ever known, we have to throw away the "Traditional parent, parenting handbook" and we have to get creative. We have developed our own toolbox of strategies and techniques for getting through each day. We are led by H, we never punish, we never cajole, coerce or bribe her. If she needs us to speak for her we do, if she feels able to speak for herself we celebrate [secretly].

We have days with massive successes where she is able to order food or buy a drink verbally. We have lots of days when she can’t do those things but we step in and make sure she doesn’t miss out. We build in loads of downtime and never make direct demands about anything including speech.

We would never expect her to use social greetings but she will occasionally look at people to acknowledge them and sometimes say a quick “Hi” and we always say a general thanks, goodbye etc.

Because initiating a conversation is a massive demand for H and maybe something she never does away from home we sometimes give people information about things that she is interested in. If she is comfortable and talking about a subject she is interested in she can talk freely. And if she isn’t comfortable she can at least answer questions or nod.

We are actually ok with SM and the actually act of speaking has become a less important aim for us. We would like to get H to a place where she is able to be more independent and I think  we are already moving in that direction but whether speaking away from home will be a big part of that I don’t know.

H wants to learn to drive next year so that she doesn’t have to use public transport which is a sign she is  thinking about her future. Finding an autism/SM friendly driving instructor might be a challenge but we are used to challenge.

There is lots of info about low arousal strategies available, we particularly like Bo Hejlskov Elven because he is clear and concise and his book "Sulky, Rowdy, Rude" is easy to read. "The Explosive Child" by Ross Greene is also an amazing book but I found it a little harder to read.

I guess for me the whole basis of low arousal is making life more positive, working together to find out how we can help to overcome the anxiety that causes the challenges and respecting that actually its ok to avoid some situations, we need to look deep into ourselves and think about the things we avoid as adults that we were forced to do as a child and extend that out into our children and into our whole lives.

Rachel Tenacious


A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15. We removed H from the education system in 2015 after she had what we now know as an autistic burn-out. The school system didn’t suit H at all but home ed has been amazing. Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.