PDA and me, with a dash of Katie Hopkins.

Pathological Demand Avoidance (PDA) and parenting have cropped up in the media lately, in part due to a television programme with a poorly chosen title, but mainly as a result of Katie Hopkins' response to such topics. For the record, I would like to state that I find Katie Hopkins highly entertaining. The nature of the media she uses to dispense her opinions is such that it requires haste and impact, which is fine, if not taken too seriously. I disagree with her on many points, but I've never taken seriously anything she has stated. I think this is the appropriate way to proceed with someone of her hyperbolic nature. I also think that she's reasonable, and as such, would change her opinion in the light of information she was previously unaware of. As should we all. I actually found myself nodding along to her short blog on the Huffington Post website about ADHD, but most grown ups know that any situation is usually highly nuanced and more complicated than that which appears on the surface, even if they don't acknowledge it at first.

What I intend to do with this bit of writing, is shed a little light on a topic that is quite close to my heart. It probably won't be very funny, but as a working stand up comic, I shall do my best to slip in the odd joke here and there.

Also, I don't expect you to "get it". In fact, I don't think you will get it. I worked in a Residential School for Children and Young People with Special Educational Needs and Challenging Behaviour for just shy of 10 years. For 5 of those years, I was in charge of coordinating behaviour programs to support those Children and Young People. I have two children, both with a diagnosis of Autism Spectrum Disorder, one of whom we suspect has PDA (although we don't have a diagnosis) and sometimes, even I don't get it. Sometimes, I think "just get in the fucking bath, will you?!" like any one else would.

If you truly want to understand the issues I'm about to write about, volunteer to work with people who have tremendous difficulties in dealing with the world. You'll definitely be wanted, you'll definitely be needed, and you will have your eyes opened.

Pathological Demand Avoidance is considered to be part of the Autism spectrum, and as such it can be easily missed. Avoidance is a part of Autism, so depending on the severity of PDA, it's often overlooked. Also, some areas (geographical) do not recognise it as a separate condition from Autism. PDA is quite often misunderstood to mean that a child doesn't want to "do as it's told" and then throws a tantrum (I hate that word, but you know what I mean) to avoid doing so. This is a misunderstanding of the word "demand" and how we interact with the world. You might not think saying hello would cause someone a problem. For my eldest son, for some time, it was a huge problem. Let me break it down for you.

Saying "hello" to someone, is a demand. It's a demand for recognition within a well defined social construct. The recognition required is the acknowledgement that someone is greeting you. Such recognition could be a smile, a nod, a wave, or just a reciprocal "hello". I'm fine with this demand, because I have a rough idea of where a "hello" is going. I'm at ease with it. My son wasn't, and it caused a great deal of distress, as he was unsure of where the greeting might lead.

Yes, some children are reluctant to engage due to shyness. The difference here is the uncontrollable nature of the fear that struck my son, and the extreme response that followed. Not to mention the embarrassment of being crippled by such a thing. And this is just a "hello", never mind the million and one other things that would provoke this fear response. My wife and I could see this happening in our son, from a very early age, and how different it was from just being shy. Luckily, we have a combined experience of 25 years working with some very challenging children, so we were able to support him through this.

Primarily, a person with PDA is crippled by anxiety, and is driven to maintain control of a situation, as unpredictable outcomes can be terrifying. And when I say terrifying, I mean terrifying.

I once worked with one boy diagnosed as having PDA, and it was like walking a tightrope. He was one of the most frustrating individuals I've ever come across, because even well meaning and friendly interaction could be met with an extreme response. He was 10 years old, built like a tank, super smart and very aggressive. Also, one of the most likeable and funny people I've met.  But when this kid had a meltdown, boy, you wanted to be somewhere else, very quickly.

I used the word meltdown there, deliberately, because I hate it, as it is over used.

What most people mean when they say their child had a "meltdown", is that their child was very upset/angry. Meltdown is a far more dramatic term, and makes for a more entertaining tale. All of my entertaining stories about working in care, are gruesome. Gruesome events make for more entertaining stories. You wouldn't be interested in the time I sat with a child for an hour listening to classical music, where I had to stop myself from weeping whilst rejoicing in The Flower Duet. No. You want to hear about the time I had shit thrown at me and I got bitten. That's entertainment.

This is the problem with the word "meltdown". What is generally meant when the term is used in reference to someone with PDA, is that the entire world is about to end. Think about a time when you have been truly terrified. Try and recall the emotions, the adrenalin, the overwhelming sense of dread. Recall those emotions, and how utterly overwhelming, negative and painful they are. If you can do this, or if you can imagine this, you're getting pretty close to what it feels like for a person with PDA to have a "meltdown".

And it will probably be over something seemingly trivial. Which is where the frustration lies, and why you won't get it. You won't understand how someone could feel the overwhelming emotion of terror and negativity, just because you switched off the TV. You won't understand.

Now, let's apply everything discussed above, to a classroom setting, where a child with an undiagnosed problem is having to go through this. What does it look like? It looks like a little shit, being a little shit. The 10 year old I worked with had spent most of his life in a constant battle, as his condition had gone undiagnosed for quite some time. Someone with PDA needs a very careful approach if they're going to be supported to remain in a frame of mind necessary for day to day functioning within a classroom setting. 

Here's where I march purposefully on to dangerous ground. Regardless of any kind of learning disability (or learning difficulty), parenting is THE most important factor. Some people might say "well, he's got ASD/PDA/ADHD, so it's not the parents' fault," as a way of trying to be understanding. And they're kind of right. It's not the fault of the parents that the child has ASD/PDA/ADHD, but there is still a lot that can be done within the confines of a condition, and that is absolutely the responsibility of the parents.

The problem here though, is that some parents haven't got a clue what to do, because they don't know that they have a child with additional difficulties. None of us know anything, until we know. Worse, a parent may refuse to acknowledge the presence of additional difficulties. My wife and I are weirdly "lucky" in that, due to our combined 25 years of experience, we knew something wasn't quite right with both of our children, from a very early age. We had a Speech and Language Therapist in the family, and we could get to work as soon as we knew that ASD was the issue. Our Paediatrician would not diagnose PDA in our eldest, but that is the manner in which we support our son. It is different from ASD in subtle ways, that become quite obvious when you get it wrong.

Parents without prior knowledge or experience might have to struggle on for years, inadvertently creating problems that can take years to remedy, if it's even possible to remedy them at all.

Once you get on a road, it can be very difficult to get off again, so early diagnosis is key if you don't want to end up with an adult with very big problems. Early diagnosis can be difficult if there is a lack of knowledge in the first place.

(I'm going to break away here to tell a funny story. I was in a green room with Mike Bubbins and Nick Doody, chatting about Autism, and how I'd recently found out that my eldest son had it. I speculated that he might have PDA, as he had most of the traits. I relayed a story about taking my son to feed some ducks, only for him to explode and yell "not the ducks again!" at full volume. Mike Bubbins considered this information and diagnosed my son with PDA. "Sounds like Pathological Duck Avoidance to me," he said.)

Is PDA an "excuse" for inappropriate behaviour though? 

Well, yes. But, no.

For example, if a child hits another child, it's an awful thing. But it's pretty normal, and it happens from time to time. There are probably good reasons for it (wouldn't share, nicked a toy etc.) but any reason FOR the hitting doesn't LESSEN the distress it causes. The same can be said about a child with PDA that acts "inappropriately". There may be a good reason for it, but it doesn't lessen any impact it might have. To add another layer of complexity, a child with PDA might just be playing up like any other child would. Being able to tell the difference requires experience with that particular individual. So to bring up a behavioural problem when addressing inappropriate behaviour isn't to excuse it, rather, it is to consider it symptomatic of the condition.

Take Gary McKinnon for example. To refresh your memory, McKinnon was a cause célèbre of the Daily Mail. The United States government were trying to extradite McKinnon for perpetrating the "biggest military computer hack of all time," despite McKinnon insisting that he was looking for evidence of UFOs. His mother fought this attempt every step of the way, getting the Mail on board. I became interested in this case when McKinnon was diagnosed as having Asperger's Syndrome, AFTER the extradition proceedings had started. He was diagnosed by a leading expert in Autism, Simon Baron Cohen. Baron Cohen (sounds like a baddy from Danger Mouse) insisted that McKinnon's behaviour be viewed as a symptom of his Asperger's. Which it no doubt was, as the type of obsessive behaviour and level of intelligence required to do what McKinnon did isn't for the brain of neurotypicals. The Daily Mail were instrumental in applying pressure and keeping the issue in the public eye. The UK eventually rejected the request, due to the high risk of him committing suicide. I didn't want him to be extradited, and I agreed with the UK ruling, but I felt that using his diagnosis of Asperger's was wrong, as it was designed to invoke sympathy. We should have sympathy for anyone who is going to be extradited to a foreign country, to perhaps be imprisoned for 8-10 years, for a crime that had no victims.

To get to my point, a trait of Asperger's is the misreading of social cues. Had McKinnon committed a serious sexual assault, would we have looked as favourably upon the case? His Asperger's would undoubtedly have played a role in such an assault, he might have thought a woman was playing hard to get, or that she didn't really mean it when she was saying "no". Where would our sympathy lie? Would a diagnosed behavioural problem, by the top expert in the country, be enough to excuse such behaviour?

Of course not. And rightly so. The victims, remain victims, regardless of the antecedents.

Who are the victims in a classroom setting? Other children. If one child is disruptive, it takes the time and resources of a teacher to sort it out. In the meantime, other children aren't being taught. Now, I would argue that the child who doesn't want to conform, (or rather, is unable to conform) should be removed and educated in a different environment. Possibly a specialised setting, or perhaps at home, depending upon circumstances. This is anathema to the idea of inclusion, an idea that is wonderful in principal, slightly more complicated in practise. What we end up trying to do is coerce a child in to adapting to something they can't necessarily adapt to. Obviously, each case is individual, but the current system is geared towards inclusion as the FIRST option.

A disciplinarian might suggest that you make a child with PDA do as it's told. The only response I have for that is: Good Luck. This is where disciplinarians decry the breakdown of respect and discipline, not just in parenting, but in the classroom. It's why we should bring back the cane. You see, when we had the cane, nobody misbehaved, and we created a society of perfect and well adjusted people that functioned perfectly until we took the cane away. Or, to put it another way, teachers had it much easier when they could threaten a child with physical punishment. 

My Dad got the cane. Regularly. He wasn't very good at reading and writing, so he'd mess about. Better to beat him in to submission than to address the problems with his literacy. It didn't stop my Dad messing about, and it meant that my Dad hated most of his teachers. My Dad didn't/doesn't have PDA, yet he carried on misbehaving in spite of the threat of physical punishment. What does this tell you about the efficacy of physical punishment as a way of installing discipline? It tells you that it doesn't work, or he wasn't hit hard enough. Physical punishment just instills fear in the recipient.

Fear is sometimes mistaken for respect, by idiots.

What could happen to a child with PDA that doesn't get support? Well, it doesn't take a genius to work out that they will have difficulty in being traditionally educated. It doesn't mean that a child with PDA can't be educated, it just has to be done differently. If appropriate support is not in place, a person with PDA is exposed to the same risks that exist for anyone that is poorly educated, or indeed, has an undiagnosed learning disability. If you want to get depressed, have a read up on the number of prisoners in the UK with a diagnosed Learning Disability (not a Learning Difficulty) and the number estimated to have an undiagnosed Learning Disability.

PDA is something that requires understanding, research and patience beyond that of a one hour TV show. A child is the product of it's genes and it's experiences since birth. If the child has genes that cause a learning disability such as Autism Spectrum Disorder or PDA, the child's interaction with the environment will differ from that of a neurotypical child. If this interaction is handled incorrectly, either maliciously or through benign ignorance, we end up with a child that has tremendous difficulties.

The budgets for specialised support to help families coping with a myriad of difficulties is being cut. Drastically. Where I live, several programs have ceased. Waiting times for diagnostic visits and support are long, while respite support for families that need it is in short supply. You might be the type of person that doesn't want to have their tax spent on this kind of thing. You might be of a political persuasion that brings you to think that parents should be responsible for their kids and that's that. I'm inclined to agree up to a point, but let me reassure you that there is a lot of money to be made in the care industry. A lot. Delta Three, the investment wing of the Qatari government has spent a lot of money buying up companies that deal with care. Buy some shares, make the plight of these troubled families work for you by filling your bank account with fat stacks of cash.

But for the rest of you, where does it leave us? I feel like I've written a lot, but not enough. I've tried to be as succinct as possible. In truth, this topic needs a book, not a glorified blog post.

I would beg of everyone, to reserve judgement until you're in full ownership of the facts. If your knowledge of Autism, PDA or ADHD is something you read that Katie Hopkins tweeted a link to, I'm not inclined to take you seriously. If you truly want to understand, volunteer. The same goes for anything, you can't really empathise until you have experienced it. 

It's emotionally draining and also very difficult to raise a child with a Learning Disability and/or ASD. Just accepting that you have a child with difficulties is hard enough. To then have other people call in to question whether or not your child has genuine difficulties, is to rub a generous portion of salt in to the wound. Everyone has an opinion when it comes to parenting, but to assume that what works for one child will work for another, is to deny children basic respect. The respect of being listened to.

A child can express his or herself, and can ask for help, in many different ways. It would serve us well to listen to them, regardless of whether or not the child has a "behavioural problem". I'd go as far as to say that each child should be treated as an individual, with education and care geared towards each child. But that takes time, and it's quite expensive. Besides, they're not kids for long, soon they'll be adults. So who cares?

Here's the thing. We want to bring up intelligent, free thinking adults. We do this by locking children in to a system that coerces them in to conforming within a rigid social structure. We want our children to behave and do as they're told, but we don't want them to become automatons. We want them to pass tests so that they can have something called an "education" because that's how you get on in life. You conform, you shut up, you do as you're told and you keep your head down.

If you don't do this, then of course, you have a behavioural problem.