PDA Sense

We all have anxious moments. Perhaps you have unexpectedly been called into a meeting with all the big bosses. Perhaps you picked up the phone and it is that call you have been dreading. Perhaps you have just missed your train and now have to re-schedule a series of important meetings. You may have felt your heart rate rise, your skin go cold and clammy, and the blood drain from your face, arms and legs. Maybe you felt a churning in your stomach and it got really difficult to think clearly.

These reactions are all part of the body’s coping mechanism. As our unconscious mind recognises a threat, it prepares the body for a fight or flight response. Blood is diverted away from non-essential areas such as the skin and digestive system and is pumped faster to deliver as much oxygen as possible to the muscles and core organs. The parts of our brain associated with rational thinking and executive function are also pushed into the background as the parts associated with the basic survival instincts take over.

The research has shown that PDAers function at this heightened anxiety level almost all of the time. Even when things appear calm, it may only be a “cautious calm” – always anticipating the possibility of something catastrophic just around the corner. Because of this hypervigilance, even the smallest sign of trouble might be perceived as huge. We may be accused of yelling even though we weren’t aware of raising our voice at all. Perhaps a yawn is misinterpreted as an exasperated sigh or tears of joy are misinterpreted as sorrow.

By watching our own tone and body language carefully, we can really help to de-fuse a situation and provide a safe and calm space. When we begin to realise the levels of stress and anxiety that are a normal part of PDA life, and we understand the effects of that stress on body and mind, we realise how important it is to provide a low arousal environment.

Photo by Alexander Krivitskiy on Unsplash

My PDA daughter was eating cheese and crackers on the sofa and dropping crumbs everywhere. I asked her if she could arrange things so that the crumbs dropped onto the plate rather than the floor. This was her solution and I absolutely cannot fault it.

PDAers can be innovative as problem-solvers and are not afraid to develop unconventional solutions. This is a valuable life skill that I try to encourage; even if the results are often not what I was expecting.

What elegant or surprising solutions have you come across?

Image copyright PDA Sense 2023.

Both traditional parenting, and the “behaviour management” strategies employed in many schools, place great emphasis on the use of rewards, praise and sanctions as an effective way to promote desired behaviour and discourage or eliminate challenging behaviour. However, most PDAers and PDA parents will quickly tell you that these approaches are not usually very effective. Why not? There are a number of reasons.

First and foremost, all of these strategies are designed to increase motivation. The goal is to make the child want to do the desired behaviour and make them want to avoid the undesired behaviour. That is all fine if the problem is one of motivation. You can very effectively make someone want to do something using rewards. What, though, if they already want to do well but they can’t manage it? They are likely to feel very frustrated with themselves because they can’t. If they then also miss out on a reward, that is only going to increase the frustration. If this cycle carries on, the frustration is likely to boil over into anger and even, possibly, violent outbursts.

When you see a child failing, you can either decide that they didn’t want to succeed and therefore need you to add more motivation; or you can decide that they did the best they could but something got in their way and prevented them from doing as well as they want to. If something is getting in the way, the best thing you can do to help them is to figure out what that thing is and help them to fix or overcome the obstacle. To put it another way, no amount of rewards or praise is going to help an amputee to walk – they need walking aids before they can even begin to try.

Another issue is that rewards and praise create their own demands. Recognition of a good quality piece of work can set an expectation that this is the standard that can be reached or exceeded in future. This can lead to perfectionism, which is a problem within itself in autism. Rewards given at the end of the week, recognising behaviour across the whole week, can build stress because of the effort needed to sustain behaviour for a long time. The good behaviour on Monday can be forgotten by Friday. Similarly, if the reward is given in public, accompanied by much ceremony, (such as in school assembly) this can further heighten stress.

Finally, reward systems, even those that highlight only positive behaviours, are often a very public way of highlighting the differences between children. Other children in the class know exactly which children never attain the rewards and the children themselves feel it very deeply. Many people take the scars of these systems with them long into adulthood.

As is often the case with PDA and Autism, when we better understand what is actually going on under the surface, we are better able to help. Understanding always comes before helping.

What is your experience? What strategies have worked for you and your family? What didn’t work?

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There is a huge problem in the UK with access to assessment and support across the whole spectrum of neurodevelopmental conditions. The waiting lists for NHS clinics are years long and only getting longer. It is no wonder, then, that people end up turning to the private and charity sectors to step into the gaps. Others simply decide not to seek diagnosis at all but just trust their own intuition and the guidance they have found on the Internet.

For many, the barriers to accessing diagnosis and support are simply larger than their capacity to overcome them. When this happens, of course, it is the most vulnerable who tend to fall by the wayside and never reach the help that is offered to those who can jump through all the hoops. When we are dealing with people who have self-diagnosed or paid for a private diagnosis, we need to remember that they haven’t chosen this route because it is the easy one. All too often it is the only realistic route available to them.

Our understanding of neurodiversity has changed massively in the last decade. With our growth in knowledge has come a realisation that many of these conditions have been underdiagnosed since their inception. People are coming forward in droves, not because it is trendy, but because they have recognised that diagnosis would make a real difference to them. Or, more precisely, that the understanding and validation that comes from a diagnosis would make a real difference.

There is already huge and unjustified stigma against private and self-diagnosis. Appallingly, this prejudice is often used to deny people access to the support they need because they have the wrong sort of diagnosis. Remember, these barriers tend to disproportionately affect the most vulnerable and needy. Such barriers need to be removed.

Sadly, the BBC has chosen to ignore all of this and, instead, make the situation worse with their Panorama investigation into ADHD diagnosis by private clinics. They could have used this investigation to highlight the urgent need for more access to high-quality diagnosis and services. They could have talked about the patient experience and what needs to change in approaches to treatment and support. There are so many ways that they could have highlighted things that could make a real difference.

Instead, they portrayed a queue-jumping gold-plated NHS assessment which was done openly in front of the cameras against the (secretly filmed) assessments from three private providers who were chosen because they were already aware of complaints about these particular outfits. This is cherry-picking of the highest order. Instead of breaking down barriers and increasing access to support, they have reinforced the stigma against private diagnosis. They have erected barriers to support not just for those diagnosed with ADHD but for everyone with a private diagnosis for their condition.

You are supposed to be a public-service broadcaster, BBC. One way that you can better serve the public is not to broadcast stuff that makes it harder for us. Your programme could have been so much better if only you had consulted people with real lived experience.

https://www.bbc.co.uk/news/health-65534449

The parents and professionals I spoke to last night had a lot of things on their mind. Some of the most hotly discussed topics were around: validating the lived experience of PDAers and their families; persuading schools and extended family members to understand and accept PDA and; where to find support that doesn’t have years-long waiting lists.

I am passionate about improving the lives of PDAers and their families. I love to spread the word about what it is like and how people can help. This is why I am part of Team PDA. Even though PDA Action Week is drawing to a close, the work to spread the word goes on. Please can I ask two very small things of you?

Firstly, please let me know what is on your mind. What are the burning issues about PDA that you would love to see a post about? What single change would make the most positive difference for your family?

Secondly, if you have the spare capacity, please consider doing something for PDA in your community. This could be as simple as sharing information about PDA with your friends. Perhaps you could join Team PDA and volunteer for the PDA Society? Perhaps you have contacts with decision-makers and could give them the information they so desperately need to hear? Perhaps you can arrange a coffee morning or an informal talk? Whatever it is that you can manage, every little bit is always very much appreciated. You really can change the world!

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It can take years to get a diagnosis of PDA (if you get one at all). In the meantime, what do we do? Should we use the PDA helpful approaches and confidently tell our family and friends that we know this is the right approach? What if they disagree? What if it is not PDA after all? Am I just letting my child get away with it?

Dr. Ross Greene is a Harvard-educated professor with experience of dealing with children in psychiatric units and juvenile detention centres. He has a simple philosophy for dealing with even the most challenging of children: “Kids do well if they can”. His approach is based on the belief that, if a kid could do well, he would do well. If they are not doing well, something is getting in the way. Why is this mindset important?

This mindset completely changes our role in the child’s life. Instead of focusing on the behaviour and how to change it, we are now focusing on “what is getting in the way?”. We are actively seeking out things that will help us to understand what the problem is and what we can do to help overcome or work around that problem. In this mindset, we are working hard as investigators and problem-solvers.

What if we are wrong? Well, we just keep looking until we find the answer that works. What if it is working? Well, we are not wrong. We might not have found the perfect solution to our problem but we have certainly found a solution.

What happens if we use PDA-friendly approaches with a non-PDA child? Could it cause harm? Generally, no. The PDA approaches have been drawn from wider research that is not PDA-specific. Dr Greene’s approach is not based on any specific diagnosis and the concept of Low Arousal Approaches was developed from work in care settings, again without any specific diagnosis. These are approaches that work for both PDAers and non-PDAers.

What if we are wrong? We are acting out of love and deep compassion. We are constantly searching for what is going on underneath the behaviour and what is getting in the way. We are developing solutions that work for us; and we are developing them together. In doing so, we are building a strong bond of love and trust that gets us through the darkest of days. What we are doing is right; even if the assumptions that led to this approach turn out to be wrong.

Even if we are mistaken, we are still not wrong.

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Needing sleep is a demand. Going to sleep is both a demand and a loss of control. The whole bedtime routine is a series of demands and sensory triggers. Added to this is fear of the unknown and fear of missing out.

Waking up is a demand – especially if you are woken by an alarm or by your parents. Getting up is a series of demands and sensory triggers. And, of course, there is the anxiety of what this new day might bring. Finally, of course, any transition is a demand. Is it any wonder that 85% of respondents in a PDA Society survey reported that sleep was an issue?

My daughter has never slept at what would be considered the normal times for someone her age. She struggles to get to sleep and struggles to wake. Her bedtime routine is long and complex. It has varied over the years but there seem to be three key elements for her:

1 – processing the day. This can take the form of a “brain dump”, recounting everything that happened and, often, replaying conversations verbatim. Other times, it can be a discussion about one or two points that have been bothering her. Without this processing time, she cannot switch off. It seems to be an important part of her mental filing process.

2 – transition time. The routine cannot be hurried. She needs time between each step to chill out and get ready for the next step. This applies even when it is very late or she is very tired and wants to get to sleep quickly.

3 – reassurance. She needs our presence; not just for a quick hug but constantly throughout the routine. She also needs us to go to bed at the same time as her – otherwise, she might be missing out on something.

Of course, we tried all of the traditional “sleep hygiene” approaches and they didn’t work. These approaches attempt to alter behaviours and impose rigid routines and, in doing so, introduce more demand rather than dealing with the underlying causes of the behaviour. We already know that PDA requires a more bespoke and flexible approach.

Nowadays, we have learned to adapt our lifestyles to fit in with her sleep pattern. There are disadvantages: if an activity only happens in the mornings, then we probably won’t get there. Much of our most active time happens after most of our friends have gone to sleep. But there are advantages too: we have a lot of time when we are unlikely to be interrupted by visitors or phone calls.

What have you found that helps your family with sleep routines?

The PDA Society teamed up with The Sleep Charity in 2022 and produced an excellent fact sheet on sleep: https://www.pdasociety.org.uk/resources/pda-sleep/ Sally Cat’s book “Sleep Misfits” is also really useful.

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One of the hardest aspects of learning about PDA for me was letting go of traditional parenting.

I was brought up in a very conservative family by a father who chose law as his career and sent me to a religious school with hundreds of years of history. Tradition was basically all I knew. The popular parenting approaches when our daughter was a toddler were 123-Magic and the naughty step. These weren’t working for us and we couldn’t understand why.

Even after we began to understand PDA, I clung to the traditional model. After all, it had worked for centuries hadn’t it? It worked for me didn’t it? Well, actually, no. I was a quiet rebel in school – always finding ways to circumvent the system – and I had to completely rebuild my relationship with my parents in adult life. Looking at the statistics for teenage mental health, it is clear that this model isn’t working for many, many, people.

As I finally let go of the ideas of rewards, sanctions, consequences and punishments, I found another problem: everybody around me knew better than me and they were more than happy to share their opinion of my parenting. It takes a huge amount of courage and faith to deliberately swim against the tide of popular opinion; especially when those opinions are coming from people you have trusted and looked up to your whole life. You need to be convinced in order to convince others.

Now, I have spent a decade learning and teaching about PDA. I have seen low demand and low arousal approaches work both in my own family and in others. I have studied the research and listened to amazing people who really know their stuff. Now, it is easy to be convinced. Back then, though, the self-doubt was constant.

If you are going through this now, have faith! Many others have been where you are and they have seen that changing your mindset really does work. When you are having a wobble, ask for support. The Facebook groups and the PDA Society enquiry line are great places to find reassurance that low arousal approaches really do work. You can do this!

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On #PDAday 2023, BBC News published an article about a 16-year old autistic girl who had been held on an inappropriate hospital ward for about 200 days because there was no space available in a unit that could meet her needs. She often had security guards stationed outside her room in an effort to keep her and other patients safe.

The article makes for very difficult reading. Experts agree that it was not the right place for her but they had nothing else to offer. She was admitted to hospital because of an eating disorder but she describes the experience as “living in hell” and “it feels like they’re torturing you”. She was overwhelmed by the loud, bright, busy, hospital environment. Far from helping her, this environment was making things far worse.

Nobody should have to go through “hell” simply to access treatment. Nobody should have to fight tooth and nail for the support they need (or have parents fight for them). There are issues of fundamental human rights here but, perhaps more importantly, this is an issue of love and care for a fellow human being. At a very basic level, how can you possibly engage with a course of treatment and begin to feel better if you are constantly feeling unsafe and under threat?

For many, of course, a hospital ward is a safe environment. Those who work in wards are not bothered by the constant beeping of machines, the cries of other patients, the smell of antiseptic, the harsh lighting or the many other things that are a normal part of their everyday lives. It can be confusing, then, when they meet someone who finds that environment unsafe and harmful to their health. It is not easy to see things from another’s point of view but it is essential that those who seek to help can do this. Without understanding, it is all too easy to unintentionally cause harm.

https://www.bbc.co.uk/news/uk-65531686

When my daughter was young, I was quite lost as a parent. We had read the parenting books and tried to follow the on-trend advice from so-called “super” nannies. It didn’t work. In fact, it was worse than that. Following traditional parenting advice was actually making things worse. We asked her school for help but all we got was more traditional parenting and trite phrases like: “You just need to cut the apron strings.”

We gave up looking for advice and just did things our own way, learning through trial and error what worked well and what didn’t. We took our daughter out of school because it was easier to teach her ourselves than to fight the system for support (I know we were fortunate to have the resources to do that). At that time, the first book on PDA was being discussed a lot in the home education groups and so, on a whim, I bought a copy. Reading that book was my lightbulb moment.

Suddenly, we had an explanation for why the approaches that we had found by trial and error actually worked! We could, at last, begin to understand what was happening beneath the surface and, as our understanding grew, so we could help, support, and nurture, her all the better. We had affirmation and validation that we were on the right path. Also, we were not alone! Many others were experiencing the same issues and finding the same strategies that actually worked.

When other family members and well-meaning friends questioned our parenting decisions, we had renewed confidence that we could answer those questions and point to research that backed up our approach. This was no longer just us guessing about how to parent. Our approach had real foundations. This confidence led to hope that we could actually bring up our daughter to be the amazing person that she is now.

Some people speak negatively about diagnosis as a “label”. Words like “naughty”, “wilful”, “weird” and “difficult” are labels that we heard in school long before we heard the term PDA. Those labels didn’t help us but PDA did. The diagnosis “PDA” led to better understanding. That, in turn, led to the right strategies, validation, and confidence. And those things made us better parents – giving our daughter the space she needs to reach her full potential. Some labels are important.

The PDA Society posted this question “How did it feel to hear about PDA?” for PDA Action week 2023. This blog is my answer. How about you? What was your reaction on finding out about PDA?

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