Our PDA Story {Week 32}

For World Autism Awareness week I'm pleased to be able to share Week 32 in the series 'Our PDA Story'. It's so important to help with understanding about all kinds of autism, and in this series I've focused on experiences from other people living with, or who care for those with Pathological Demand Avoidance (PDA). There's been a great variety so far and you can find them all via the link at the bottom of this post.

The post this week takes a comprehensive look at the whole development so far of a young boy who is close in age to Sasha. It's particularly interesting because it looks right back to the early years and follows through from there; I'm intending to do this kind of summary for Sasha in the near future.

It explains a lot of the specific behaviour in detail and why this family have now moved on to unschooling (that's a whole topic for a post in itself!). Although it may sound like a long story, I know that there is so much more to it than we get to read here; more meetings with professionals, emotions involved, all those kinds of things. If you can leave any comments of support after reading I know the writer would appreciate it.

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Charlie was born by c-section at 38 weeks due to pre-eclampsia weighing just 5lb 8oz. He was breastfed for the first few weeks then bottle fed from there on. At around 3 months old he developed plagiocephaly and brachycephaly. He was fitted with a helmet at around 9 months old to try and correct this. He was generally a good baby but very clingy to me. We tried to put Charlie in nursery so I could return to work around 6 months of age and he just wouldn’t settle there. They tried everything and he just constantly cried. Charlie walked just after his 1st birthday but didn’t seem to crawl before that. Charlie was a passive baby.

Charlie became very, very difficult around the age of 18 months; he liked control. For example if we got on the train and just sat anywhere Charlie would have a fit, he wanted to choose where we sat and would always have to go to the bike carriage and sit on the chairs that folded up and down. He would repeatedly open and close the seat banging it up and down and if I tried to stop him he would lie on the floor and kick and scream. He would do the same on buses, I lost track of the amount of times I would argue with people because of his disruptive behaviour.

Normal parenting techniques never seemed to work. Charlie didn’t babble he would just point and make an ‘aaaah’ noise. We started to become concerned over his repetitive behaviour and his lack of speech at around 2 and a half. He wasn’t speaking he didn’t deal well with lots of people around him. We couldn’t go to family parties or gatherings because he would be so disruptive and again he would go straight to the doors banging them open and shut or he would just seem very stressed and anxious. Shopping was out of the question.

It was at this time that we had job offers in Malta so we decided to make the move there. Charlie’s need for control continued, his behaviour was outrageous at times, he never did as he was told, we battled every day to brush his teeth and wash him. He had no sense of danger on roads. He was always obsessed over buses and would look for the long bendy buses and yellow ones. His obsession at this time was Thomas the tank engine. When in the house and relaxed he would play for hours and hours with the trains in role play situations.

We became desperate so we went to the doctors in Malta literally in tears at a loss and they referred us for an assessment for Charlie. Charlie was 3 years old at this stage and he wasn’t speaking. The paediatricians and specialists assessed Charlie and ruled out autism due to not meeting all the criteria but they did notice his processing and language delay. They referred us for regular speech therapy and rapidly Charlie’s language started to catch up.

We decided to try and put Charlie in a new nursery that had been built and he was one of the first children to join them. We think that because the nursery was empty that this is why he took to it so brilliantly. He liked the carers that ran it and they did lots of interesting things with him. We had child assessment go and observe Charlie and he was doing ‘great’. Teachers comments were always positive but the comments were always he is a leader not a follower. Charlie was popular with other kids and would always tell them what to do.

As the nursery grew more popular Charlie seemed less thrilled with going there. We decided to put Charlie in a school kinder but kept him back a year because of his speech delay. Charlie’s teacher was really nice and she spoke in a soft manner, Charlie responded well and had friends. Charlie was absolutely obsessed with getting everything in order for school. He would ask over and over again if we had everything as if he was anxious about drawing any attention to himself. The teacher said he was very bright but hated being told off and would go into a sulk. He was very, very rough in school and didn’t seem to sense danger. At the same time he never hit any of the kids, was just running around mad. Getting him to actually go to school was a battle every day, he had to play on his iPad first or watch the TV. If we got up late and had to rush out he would go mad.

We learned to adjust as a family. We found ways to get Charlie to comply although they didn’t always work. We gave in to his demands as we could not win. If we tried to exert our authority over him he would have a massive fit, become very confused and have a violent outburst. We felt like the worst parents ever, as nothing seemed to work. Charlie never understood when he did things wrong and when we tried to explain what he had done he would say ‘it’s your fault not mine’. He never accepted blame even though there was no doubt he had done wrong. His sister Neve would get the blame for everything and even we started blaming her for starting a tantrum even though it wasn’t her fault. The guilt became a very big problem for us. Neve is an amazing child, very thoughtful and wonderful but sometimes she would behave as badly as him, as if she were copying Charlie and wondering why she didn’t get away with it the same as him.

My husband and I often discussed Charlie and he puzzled us beyond belief. He appeared sociable with good eye contact yet we found it hard to have flowing conversations with him. His friends would come over and play and they seemed light years ahead with their conversation skills. We put this down to his speech delay but it hasn’t improved even now and he is 7. Charlie’s obsessions with trains along with his ipad lasted until he was 5 then the youtube videos took over. He would literally be happy to sit all day long and watch game walkthroughs. His conversation was mostly based around games. He would answer anyone who talks to him but mostly with yes/no answers or repeating the question.

Charlie seemed to have some sensory issues as well. He will not wear jeans or any coats that cover his hands. He has a very real problem brushing his teeth and will go weeks without doing so and it really seems to repulse him, sometimes he nearly vomits. He will not take medication under any circumstances and we have to hide it in orange juice if he needs it. He had no sense of danger and seemed to have quite a high pain threshold. When Charlie is sick you have to literally guess what is wrong as he won’t tell you where something hurts, he goes very very quiet and becomes well behaved. Usually this is a good indication for us to investigate further.

One thing that did happen is when he was hitting me, I was trying to keep calm and I just cried in front of him. He did recognise how upset I was and said ‘are you crying’ I said ‘yes’ he said ‘why’ I said because you hit me Charlie. This seemed to shock him. He stood there looking at me for about 5 minutes then he came to me and said he was sorry which he has NEVER done before. After saying sorry though he continued to act in an aggressive manner. In bed that night he started to make repetitive noises like stimming as if he were trying to calm down. He always wants to be cuddled and he sometimes asks me to rub his feet.

Not long after Charlie entered year 2 in school it was becoming increasingly difficult to get him in. He would come home from school and just walk round in circles over and over again, he started to want to fight with his dad but wouldn’t stop and would attack him with toy weapons. In the mornings he started to totally refuse to leave for school, crying, sobbing, banging his head on the wall, telling us he wished he was dead and would kill himself if he had to go to school. We struggled with the rest of year 2 and he took lots of time off.

When we were in England in the summer holidays, we saw the programme called ‘Born Naughty?’ and the little girl on there had a form of autism called PDA. It was like being in the right place at the right time and my husband and I just looked at each other and said that sounds exactly the same as Charlie. After much research and various forums we were utterly convinced without a doubt that he has PDA. He fits the bill perfectly. We pursued this as a diagnosis and got it from Malta even though they knew nothing of it. We took the research to them and they agreed with us.

Six weeks into the beginning of year 3 we made the decision to illegally remove him from school (it’s illegal to home-school in Malta) for his mental health and general wellbeing. At this time he was not yet reading. We removed all demands, even letting him hang around with no clothes and not brushing his teeth, washing etc. We let him do whatever (within reason) he wanted to do. After a few months Charlie’s behaviour was greatly improved, all violent outbursts stopped. He stopped the attacks on his father, his meltdowns became very rare. He taught himself to read. He amazed us with facts that he had learned from YouTube.

He is very bright but we cannot sit down and get him to do academic work of any sort, he has zero attention span and simply switches off. For this reason we have decided to go down the unschooling route and trust in his ability to teach himself. We try to get him to join in with things from time to time, sometimes it works sometimes it doesn’t. Charlie will go through stages of wanting to go outside to maybe a park or the beach but then he will need lots of time indoors in his safe space.

Charlie still needs support to get dressed, wash and sometimes help after he has used the toilet. He eats with his hands and is very messy. He managed to keep one of his friends who comes to our house once or twice a week. Sometimes Charlie will ignore him though and watch his YouTube videos. His friend is happy to be bossed about a little at this time so goes along with what Charlie wants to do. They are very close and have known each other since they were 3.

Since Charlie has been out of school for nearly 2 years now we know we need to move from Malta as we cannot legally continue to unschool him. We are looking to move to Sligo in Ireland as we have discovered a school that we think may actually be suitable for Charlie. It is a Sudbury model school (basically an unschool school) Kids are free to follow exactly what they want to do. The school is democratic and the kids have a say in how it is run and the rules in which they follow, there are no lessons, no classrooms but instead they have facilitators and mixed age children who are free to follow their own passions and interests.

If any school were to work for Charlie it would be a school like this. We have explained to him about it and he seems keen to go. We mainly wanted him to go for social reasons and also he will be able to observe others and join in activities he may not have been exposed to at home. We have no idea if this will be a success and we know there will be challenges but it is worth moving to another country just to see if we can find a place for him where he feels he can be himself but also somewhere he can hopefully make friends.

Charlie has taught us as a family to work together as a team. He has taught us patience and he has taught us to be better people. We still have challenges and we have had to develop a thick skin and the ability to not care what anyone else thinks, including other family members. We have to trust in him and lead by example only. That is the only way we can move forward.

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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'. One of the most popular posts on this blog is Strategies For PDA.

PDA can often be mistaken for ODD (Oppositional Defiant Disorder) but there's a definite 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 amount of information about Pathological Demand Avoidance, and there are also links on the PDA Resource website.

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 and I'm hoping to be live tweeting from the event on their behalf!

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?