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.

Thursday, 25 October 2018

My thoughts on selective mutism as part of a demand avoidant profile.

Guest Blog by Rachel Tenacious


As background, H had been described as being "Unable to talk when she is anxious" by an Educational psychologist when she was 11. I went further when she was falling out of the mainstream school system and described it as "Effectively Non-Verbal when stressed". Another parent first used the term Selective mutism to describe her difficulties when I  described  H to them.

Sophie Harding and Libby Hill from Small Talk  agreed that H does have SM when she was 15.
I had begun to learn about demand avoidance and low arousal before I had heard the term selective mutism.  At fist I was unsure whether H fitted the PDA profile but I needed to gain a better understanding of her if we were ever to attempt formal learning again so I headed off to the NAS PDA conference in Brum in November 2016.

What I learned there was going to be life changing for us. The experts talked about a group of autistic people who demonstrated extreme demand avoidance but were not explosive or aggressive physically.

This was my lightbulb moment. H fitted this group perfectly and always has.
H avoid  everything that makes her anxious and everything she perceives to be likely to make her anxious. 

When she started school H did not have SM but she was massively anxious and was demand avoidant.

At preschool she never managed a whole day because it was too much for her but when school started she suddenly had no choice.

She screamed, kicked, ran away, begged, sobbed and clung onto us in an attempt to stop us from making her go. Unfortunately we didn't listen to her, she was we believe told to put up and shut up by school staff so she did.

I am not sure that H ever initiated a conversation with an adult in school ever and she certainly didn't ever ask for help.

When H is anxious she freezes, she makes it her mission in life to be invisible away from home and yet that is not her true personality. At home and with a  small group of very familiar and chosen people she is loud, funny and very outgoing.

The person that most outsiders see is not the real H, it is the H in self preservation mode. All demands are difficult and speaking is one of the most challenging.

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.]

Wednesday, 10 October 2018

About masking autism and why I think we should think past it


Guest blog post by Rachel Tenacious


This morning as often happens I saw a poster/meme about masking and what do we know about it. People are so much more knowledgeable about this part of many people's autism but yet we don’t seem to be moving forward in solving the problems caused by it.

These are just my thoughts as an autistic person who "masks" and the parent of an autistic person who "masks".

The thing is I don’t actually believe H does mask, I can see the struggles, the stress, the anxiety but often others can't, won't, don't!

I think we need to move beyond thinking about masking as a thing and look at the way we view the person we are thinking about:

Does the person have a diagnosis of autism?
What do we know about them?
Have we been told what signs of stress to look out for?
If the answer to my first question is yes then I want you to stop thinking about that person in terms of masking and start thinking about what you can do to support them.

My point is that all people with autism need support in school, at work etc whether they mask or not and by saying we can’t help them because they are masking is the same as blaming them for not asking for help.

I have a perfect although hopefully extreme example of where schools can make a critical error in terms of supporting a child with autism. My child's school didn’t support our appeal for her to be statemented in fact they were adamant that she was "fine" in school and to prove their point they made a video of H doing drama!

The video showed H rocking from foot to foot while standing in a circle of other children, twisting her hands, licking her lips and rubbing her face with the sleeve of her jumper [something which had caused her to draw blood in the past, you wouldn't believe the harm that can be done by acrylic, luckily we were able to buy 100% cotton jumpers for this school]. Yet H was taking part in in the lesson and was engaged. Apparently that was enough for the school. It wasn’t for us and thankfully not for the tribunal either who didn't view the video on the day of the hearing but had clearly watched it and had also noted the clear evidence of anxiety.

Sharing and understanding information about what anxiety looks like in each individual with autism or suspected autism is massively important. So many of our children are being failed by the system, the stats for the number of autistic people out of school or work make very depressing reading and yet with some simple skills eg listening and looking carefully there could be a way forward.

I have seen evidence that this is possible, H after three years of home ed to recover from the trauma suffered in school has tentatively dipped a toe into the world of college. She is doing eight hours a week and has a 1:1 LSA. This LSA has already shown after seven sessions that she is intuitive enough to spot the signs of stress in H. Yes it was subtle, shuffling around in her chair, sighing, pulling at her t shirt but it was noticed. The LSA was uncertain what action to take but that doesn’t matter at this time, its very early days and no one knows what action to take really. The fact is that by coming and telling me at the end of the session that there had been a noticeable difference in body language I was able to get some more detail later on on the evening and can begin to help to solve the problem [which turned out to be a noisy fan on a laptop that was preventing H from being invisible and which she has become hyper focussed on.] In the old days that would have been missed and H would have quite likely school refused the next day but here we are well on the way to fixing the fan and at any rate talking about other options.

It is so important to me that we stop almost blaming these children, young people and adults for not letting us see how much they are struggling. They do this because they want to fit in, they want to do well and its hard work. We need to give them permission to receive help, we need to help them to understand that being helped is a positive thing and that they don’t need to hide their autism anymore.

 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.]


Tuesday, 28 August 2018

'He is stubborn and unco-operative!'

Guest blogpost by Karen Horner:
Stubborn and un co-operative! Oh how many times have I heard that working in mainstream schools. We have come along way in the last 15 years to understand autism yet some schools still continue to use words like stubborn, unco-operative, own agenda, daydream ........need I go on?

Funding has been cut so much that children who need the help and support in schools are either not getting it or are given 1-1 support with teaching assistants who are not trained or experienced in autism. I could tell so many stories but one that really got to me happened a few years ago. I observed a child in a mainstream school and was pleased to see at carpet time that the teacher was ok with the child looking out of the window as she was talking.
When carpet time ended she asked the child what she had been talking about and he duly answered word for word. She then asked him what she had requested him to do and again he answered positively. Going back to his seat he picked up his pen and continued to sit for a while. The T.A approached him and reminded him he needed to put the date on and the learning objective showing him where to put that. He complied and proceeded to also write the title. Then he sat and sat, the teacher reminded him what he needed to do and continued sitting with the higher group. The child got up and began walking round the classroom where by the teacher calmly asked him to sit down and get on with his literacy.
One again he just sat and looked perplexed. He then got up and went into the reading corner where by he began to tidy the books, once again the teacher now with an edge to her voice asked him to sit down reiterating that he had work to be getting on with and she hadn’t asked him to tidy the books. I observed the expression on the child’s face as he continued to tidy them. The teacher then becoming more agitated approached him with an edge to her voice again telling him to leave the books and go and do his work. The child’s arm shot out striking the teacher whereby he was then excluded from school for being stubborn, unco-operative and aggressive. So what really happened here? I spoke to the child in his home with his Mum present and it did take a long time to work through what happened but for here in a nut shell, he got back to his seat and didn’t know how or where to start his literacy so he wandered around the classroom looking at the work of others to try and work out how to do it. He knew what he had to do but not how. As he was then not allowed to do this it struck him that his teacher liked the book corner tidy and as it wasn’t he decided she might be pleased with him if he tidied it. When she asked him to leave it he felt he couldn’t as he hadn’t finished it so he continued with the aim of finishing then going back to his seat. He put his hand out as the teacher approached because she was coming (in his eyes) at such a speed it made him apprehensive so he wanted to stop her.
In this one scenario any teacher or T.A experienced would understand why all this had occurred moreover how to deal with it. To me, this was classic difficulties with theory of mind, executive function and visual difficulties. You could also add central cohesion into that mix as he was unable to see the bigger picture of what would happen if he didn’t comply. This exclusion could have been avoided if trained and experienced staff were on hand to help him. So many times I hear negative things such as, 'He is lazy so don’t intervene', 'He knows it he just wont do it' etc. It does make my blood boil. These children are tomorrow's adults and the system is failing them right, left and centre.

Karen Horner

Karen runs Gateshead Autsm Support, which supports families and children living with ASD, click here for the Facebook page. She also runs Relax Kids in the North East

Gateshead Autism Support

Tuesday, 21 August 2018

A New Way Parents Can Support Their Child’s Development


Guest blog post by Oisin Hurley

As a new parent it is normal to be anxious. There are many stresses involved such as; is my child crying too much? Are they eating too little? Will I bond with them or will they bond with me? What if I forget my child while shopping in Aldi and only realize when I get home! All of these are genuine concerns new parents have voiced.

There are external pressures to manage such as what school should her or she go to? Where is best to live in order to provide for a family? All of this along with keeping yourself and a little one alive and well. There are many things that are beyond our control, keeping germs away, teething, nappy rash, tumbles and injuries are part and parcel of growing up. Many parents say they often wonder what their child will become, what kind of personality will they have, will they have enough friends in school, will they be happy, will they be successful in what they set out to achieve?

Education is a huge area of concern for parents, particularly in relation to their own. Often times when a problem arises for a child around the area of Speech and Language development it takes a long time to see a therapist to diagnose a problem. For example, figures from 2015 report showed 15,000 people were waiting for a speech and language therapy assessment. Thankfully these numbers are moving in the right direction over the past few years. Yet it still remains much too high for a service of such critical importance.

What if I were to tell you that there is a simple action that can be taken that requires very little time and effort that can help your child’s ability to learn and develop? While there is no silver bullet, you can start by spending a small portion of your day (30 minutes) exposing your child to more language by reading, singing, and playing with them.
Research shows that the more words your child hears in the first 3 years, the more likely they will be to succeed in school. Spending this time engaging with your child not only increases there vocabulary but it strengthens the bond between the two of you. What’s more is that 1 in 10 children are now at risk of experiencing early learning difficulties, which has shown to be reduced by exposure to increased language in the home environment.

To combat these striking statistics Talk2MeMore have developed a new app that is effectively a Fitbit for words. The app monitors the amount of words your child is exposed to each day delivering feedback on what a child has just heard. It also offers practical suggestions of how to enrich your child’s environment such as what books could be read in order to expose them to more. It is a tool to allow the parent to know what their child is experiencing with incentives to improve their language environment. This revolves around quality and quantity. This can help relieve anxiety and set your child up for when they are ready for school. Reduced anxiety in this department can lead to a better relationship between you and your child. This researched app is showing early signs of attributing positively into developing a more language rich environment for children.
Talk2MeMore are offering a 7-day free trial of this exciting new app. To find out more visit their website to get started today.


Oisin Hurley

photo sources: Shutterstock

Tuesday, 14 August 2018

Independent speech and language therapists do tribunal work too


The Association of Speech and Language therapists in independent practise (ASLTIP) has a website where you can seek out Speech and language therapists who carry out medico-legal work. This is based upon their guidance. They may cover the following situations:
  • SENDIST (special educational needs and disability tribunal) – cases where a child’s education is affected by a communication problem and extra specialist assistance is being sought.
  • Medical negligence (such as birth injury affecting a child’s development), or trauma (such as a road traffic accident resulting in head injury and communication problems) – cases where the aim is to determine costs for therapy when seeking compensation.
  • Occasionally an assessment is necessary to assess whether or not a problem exists.
Recognised characteristics of medico-legal work:
  • We will review medical notes and other important documents.
  • Assess  the client’s speech and language skills to determine whether a problem exists and, if it does, how severe it is.
  • Writing a detailed report of findings, diagnosis, prognosis and recommendations for further therapy. In SENDIST cases there is a need for very specific recommendations quantifying the amount of ongoing therapy considered necessary.
  • Appearance at Tribunal/Court as an expert witness if applicable.
Some points you may wish to discuss with any therapist you contact:
  • The therapist’s specialist credentials and experience in the area of medico-legal work e.g. writing expert witness reports and giving evidence at SENDIST/Court.
  • As a detailed communication assessment must be made, the therapist needs a background of experience with the relevant population (i.e. adults or children), and with any specific conditions in the case (e.g. autism in children).
  • The timescale for when the report is needed and the reports/information the therapist will need prior to the assessment; how liaison with other professionals (e.g. a solicitor if one is involved) can be maintained; who else can provide qualitative information about how the client functions in everyday communication situations.
  • How much experience the therapist has with similar medico-legal work.
  • Where the therapist will see the client for assessment. Sometimes the therapist will wish to see the client in more than one situation.
  • How much the therapist charges. The therapist may have a fixed charge for the assessment and subsequent report. However, it may be that the therapist charges an hourly rate and guidance on average overall charges can be requested. Because each case will be different, it is important to discuss specific details which are relevant, so you are aware what the therapist will provide and what the likely fee will be.
We do medico-legal work at Small Talk and are prepared to travel so please let us know if we can help or look on ASLTIP's website www.helpwithtalking.com