Our PDA Story {Week 34}

Week 34 now in the series 'Our PDA Story', where other families have been sharing their experiences of life with Pathological Demand Avoidance. 

This week's story covers the real struggles in education of a boy diagnosed with PDA. It's a heart-breaking story, and yet I've heard many similar ones from other parents. In a sad way it does help to know they are not alone, even when they wouldn't wish these challenges on anyone else. Hoping for a positive outcome for this family.
 

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My son Joe is diagnosed with PDA/ASD/ADHD/SPD/anxiety. He attended mainstream nursery and did ok there. He loves free play and is very, almost obsessively sociable with his peers, he has to be around people – usually playing alongside or on his own but with people around. He struggles terribly with sleep because he feels alone and I still have to be awake with him if he is awake or he has a panic attack. 

He started mainstream primary and did ok in reception and year 1, as it was still play based, and he was in control. He taught himself to read and maths – Joe mainly learns by teaching himself as he has to be motivated to learn something or he avoids it. We were struggling at home at this stage as we were using Webster-Stratton parenting after CAMHS told us he was definitely not autistic – school and social services agreed any problems were due to poor parenting. 

Joe went into year 2, and a teacher told me she was going to “break him” of (what I now know is PDA) and suddenly Joe could not cope in school. Year 2 they had to sit at desks and do what they were told which he could not tolerate. Joe began to run out of class and hide, then violent meltdowns (never hurting a child – generally directed at furniture but occasionally members of staff if they backed him into a corner). By the beginning of year 3 at school, CAMHS and social services were all agreed that he was autistic and he was rapidly diagnosed. From the beginning of year 3 he had 1:1 full time in school but spent most of his time in isolation as he could not cope with the demands of school and his method of avoiding mainly consisted of disrupting the class. If they tried to push him he would meltdown. His anxiety was through the roof, he was extremely violent at home and we were put under child protection due to the risk to his brothers if he seriously injured me (this was after 3-4 years of social services involvement for at least a couple of years having a support worker out every week watching me parent and not understanding his extreme responses). At the child protection conference everyone round the table said the family were doing nothing wrong yet we ended up under child protection. It was the very worst experience of my life, I have never been so terrified as I was then for fear of losing my child. 

At this point CAMHS reviewed Joe to see if he could have medication (no, was the answer, the right school will sort him out), and they told me all his behaviour was due to anxiety. This statement was my lightbulb moment. I went home and we completely changed how we lived; overnight we started doing gentle parenting/collaborative problem solving (see “The Explosive Child" by R. Greene). We gave Joe as much control of his life as he could have (bearing in mind he has 2 younger siblings, one of whom also has ASD/ADHD). He was given a room of his own downstairs that he controlled, but we always maintain there are communal areas that we all have a say over. Overnight the violent meltdowns stopped (he had been in meltdown for 2-5 hours per day and seriously violent up to this point). Slowly he calmed and became happier, and we discovered a phrase in his diagnosis “uses a number of demand avoidance strategies”. We “discovered” PDA and it was like reading someone writing specifically about Joe. A pathological avoidance of demands (and he sees demands everywhere, even his body wanting a drink or me suggesting to go to his favourite place), role play, superficial sociability, intense mood swings etc… We began to see why Joe reacted the way he did and why autistic strategies did not help him. We introduced more PDA strategies into our gentle parenting (giving him time to process/reducing demands etc..) and felt we were finally understanding Joe. 

Meanwhile in Year 4 Joe started at a local maintained EBD special school. He was so terribly scared of the other children that he really struggled and although for a while he masked at school (telling me he was “screaming in his head”) eventually he could not cope anymore and had a breakdown at the end of year 5. He spent year 6 on role but signed off school with anxiety whilst we attempted to home school him (we home school his middle brother as he cannot cope or learn in mainstream without support, which there are no funds for). After 2 terms together with Joe we decided home school did not work for him, he felt home was home and not for school, mum and dad are not teachers and so he refused to let us teach him and most of all he missed his friends. By now Joe had a good group of local friends and was starting to go to the park with them or have them round to play. They were all going to the local high school and Joe was very keen to join them so after a number of meetings he was given a place at the high school with 1:1 support (his statement was converted to an EHCP at this point too). Joe started at the school but because they did not make any reasonable adjustments for him he was excluded within 6 days of starting, after a panic attack/meltdown during CAT tests (even though I had strongly requested that he did not take these tests). Joe did not yet have a PDA diagnosis so no strategies could be put into his EHCP however much I asked for this. However much I spoke to the school they could not make accommodations for his PDA as this would upset other pupils, and affect their OFSTED as they would be seen as allowing poor behaviour (they are outstanding as far as OFSTED are concerned). Joe was put onto a half day timetable but further exclusions/isolations for being verbally abusive/disruptive to avoid the demands of school. Punching one child who was bullying him (this is the one and only time in his whole school career that he has hit out at another child) led to him having his timetable reduced to 2 hours a day and by October the school asked for Joe to be moved to a more specialised setting. Joe was devastated as he loved the school and being with his friends he just could not cope with the demands of the lessons and needed reasonable adjustments. 

Joe had a complete breakdown at this point, he was hearing voices and seeing things, his speech could be random, he was speeding up and slowing down at different times and he became both suicidal and extremely violent at home (we had to call the police and an ambulance as his mental health was so poor). Eventually the disability team of social services became involved as we had to move his brothers out to my parents to protect them and Joe was in a terrible state. We were assigned a fantastic social worker, she is totally on Joe’s side and is very very good at getting everyone involved to pull their weight (including us). Her support has been invaluable and she managed to get Joe a personal budget which we have been using to take him out whilst we try and find a PA. At this point Joe tried to go back to the mainstream school but he could not cope and walked out with friends as he was scared on his own, “truant” cried school and insisted he did 3 days in isolation, (the school rule is one day but the school were incredibly inflexible and decided because he was only doing 2 hours a day then they wanted him to do 3 days). He saw this as unfair and refused so the school then told us they had to permanently exclude him – but as this would make them look bad we were asked to keep him at home (still on roll) whilst a new school was found. 

By this time (beginning of January in his year 7) I had contacted every suitable school (even residential though we really did not want him in residential as Joe is such a part of our local community) in 3 counties and none would take him. All were far too worried about how Joe would impact on their OFSTED ratings – seriously this was their major concern! County said Joe would have to go to a specialist independent school and tried to find one but none would take Joe. Eventually we found a tiny specialist independent school 45 mins drive away who said they had experience with PDA and they said they would try and have Joe in their school. 

Joe started the independent school in May of his year 7 and did not like it; in his eyes it was not school. He was part time and then full time for half a term. He began to avoid the demand of the school work again, by disrupting his class (3 pupils max in a class) or by being verbally abusive to staff or pupils – he was panicking at the demands they were putting on him. He was excluded for a few days and we had a meeting where I tried to explain it was the work and asked for demands to be reduced. Things got progressively worse until he was verbally abusive to a pupil whilst trying to avoid the demands of the school work. The school say they can no longer have Joe in school due to the risk to the other child and himself (as the other child may physically attack him). They can’t permanently exclude as he has not done enough to permanently exclude him so yet again Joe is sitting at home bored and sad, on roll at a school but not allowed in. 

Right now, we are going to start a fight (school are supporting) to get a personal budget for him to have tutors/sports lessons at home/in the community. There are no schools to my knowledge that will take Joe and he has missed so much education we just need to move quickly so he does not miss any more. This seems logical to me but I am sure my LA will dig their heels in as it is much cheaper to have Joe sitting at home out of education (as he has done for nearly 2 years now) than to fund a personal budget and to give him an education. The impact of the constant exclusions from school on Joe has been immense, his mental health, confidence and hope have all suffered. When I asked him yesterday what he wanted to do when he was older (so we could plan some work around that) he said “I’m going to sleep on the streets” and he was adamant about this. The school system has left my bright and able son with so little hope that he sees his future as being homeless and on the streets. 

Sorry this story is so, so long, I am very sad at the position we are in and feel we really need to fight the education system so the next group of children with PDA will have their needs met in school by the schools adapting to the child’s needs rather than the mess that has been made of my own son’s school life. 

On the positive side I do have to say the main things that have kept Joe going through this terrible time are his wonderful (but a bit rough round the edges) group of friends, his family’s endless devotion and love for him and his social worker’s support. I am hoping and praying that we can get a personal budget and Joe’s school story will have a happy ending.

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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA.

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA.

I suspect PDA can be misdiagnosed as ODD (Oppositional Defiance Disorder) but there's a distinct difference; more information here: the difference between PDA and ODD.

A variety of experiences of living with PDA can be read using the link This is our PDA story. 

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.

The PDA Society webpage has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website. 

The PDA Society are holding a PDA conference in Birmingham next Wednesday on 18th April 2018. 

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

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