Our PDA Story {week 42}

Time for another guest post in the series 'Our PDA Story', describing experiences of living with Pathological Demand Avoidance. The series aims to share different angles of living with PDA, in order to both educate others and to bring families together to feel less alone.

The 'lightbulb moment' when reading about PDA is something which is often mentioned. Parents often feel that other descriptions of autism which are more commonly known about, such as Asperger's Syndrome for example, just don't quite 'fit' their child. This was certainly the case for us, and for this week's writer.

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It was going so well! Too well. I should have known it couldn’t last. Since Christmas I have felt noticeably calmer than I have for the past 25 years and it felt so different; so wonderfully different. But then. Several unrelated issues appeared and converged to form that perfect storm. My carefully reduced levels of anxiety were suddenly replaced by the familiar feeling of being overwhelmed. Almost permanently. That out of body feeling or the feeling that I imagine people have when they are high on drugs; here but not here. Except that I don’t need to buy drink, drugs or anything else to get that feeling. Besides, it’s not a feeling I would ever pay to achieve or ever choose to have – it’s unpleasant and unhelpfully debilitating. When like this, I find myself spending vast amounts of the day just staring into space in a state of almost complete overwhelm whilst life goes on as normal around me and whilst I am sure I appear normal to everyone around me.

But I know I’m not normal. I don’t have a guide dog, a crutch or a physical deformity that tells the rest of the world that I might need some help. Yet the reality is that I do need help and support to negotiate day-to-day living; without it, getting through the day is a pretty tremendous achievement. It’s made more challenging by the fact that I’m a single mum. So to support myself and S, I work full-time. I absolutely love my work as an engineering consultant – it plays to my autistic strengths of being able to recall huge amounts of technical information and my love of learning. However, with my extreme sensory sensitivities, an open plan office used to zap my energy and prevent me from concentrating. In one job, I actually just took my stuff, found a desk on the top floor of the building in a large cupboard and set up there on the basis that someone would eventually move me. They never did; in fact, I don’t recall anyone even mentioning it. They would just come upstairs and talk to me in my cupboard. I look back now and realise that was one of my first attempts at accommodating my own needs; not wants but things that I need to be able to exist and function. Quiet comes high on that list and the large cupboard on the top floor was certainly that! Things improved for me when I managed to find a position that was home-based. Home working over the last 5 years has enabled me to unstick myself from the ceiling primarily, I believe, because I’ve kept myself predominantly in environments where I can cope and where I'm not triggered so often. Giving myself more of a chance to calm down over those year, my anxiety levels to began to recede from the cliff edge that I had existed on for so many years. I regularly joke that I go to work for a rest…..except that it’s true; life outside of working hours is WAY more demanding than at work.

I work to support our incredible team of two; S (the teenager) and me. And we are DEFINITELY a team…..that’s how we manage to cope. He helps me when I’m not coping and I help S (a lot). In many ways, S is very fortunate. He has a mum who understands PDA from the inside out; who has lived her life being that mix of both autistic and anxious to the point of being demand avoidant. From birth, there has been nothing that S has ever done that I haven’t understood…..even when everyone around us was baffled. To me it was blindingly obvious that he wasn’t coping and why he wasn’t coping. S was just more publicly demonstrable about not coping than I tend to be. But ironically, it was at these points that I was even less able to help him. His outbursts sent me in a demand and sensory spin and it took all my resolve not to have a public meltdown myself; desperately trying to hold myself together, I was in no state to help him, even though these were his greatest times of need. The reality back then was that I couldn't manage to be in the same room as my son for more than 5 minutes without needing a break; I sought sanctuary in the downstairs toilet because it was small, quiet and warm. What kind of mother did that make me? What kind of mother was I that I dissolved into tears and then invariably had a meltdown when we got back to the privacy of our home, or melted down more publicly when I had to attend school and try to explain what S needed to teachers who were convinced they were right when they couldn’t have been more wrong? These times were degrading and I know I lost all credibility with school staff, receiving all kinds of labels and the comment of “Mrs W, we’ve never had a parent like you before”. I still don’t know what exactly that comment was meant to mean.

At the point when things were at their worst; when S was spiralling down to my own pitiful levels of poor mental health at the age of 9, I begged CAMHS to help him 3 times. Nothing. So on a July day, when I felt I could do no more, I pressed the emergency stop button; I rang Social Services and told them I could no longer cope. I had numerous cups of tea on several occasions with a young social worker who clearly only saw an intelligent professional in a nice home and a child, left to his own devices, behaving impeccably while his mother dissolved into floods of tears. It was not long before school and my social worker joined forces and I was told that other families were far more in need than ours; made to feel as if I had wasted their time. That was a really low point - my safety net had now disintegrated and I realised that this was sink or swim time for both me and for S. So I stepped back and took a long hard look at our situation. And I stepped up. I asked the man that I loved to leave; if I was going to do this, I had to do it the way I knew was right; there could be no compromises. It’s amazing what you can do when you have to, even when you think you have nothing left to give. I'd realised that traditional parenting hadn't just been wrong for S but it had been detrimental and the definition of insanity is to carry on doing the same things and expecting a different result. So I took a deep breath and tried the exact opposite of what traditional good parenting says we should do; I thought back 40 years to what help I would have appreciated when I was a child. I realised that I was all S had, that the so-called experts in Social Services had no understanding of our problems and it was time to dig REALLY deep, learn how to put my own overwhelm and sensory overloads in a box and give S what I instinctively knew he needed whilst ignoring the opinions of absolutely (and I mean absolutely) everyone around us.

Back then I didn’t have a name for PDA, although by now we had both been diagnosed with Asperger’s on the same day by the same private psychologist – a diagnosis that sort of fit but not really. I remember with such clarity the night 3 years ago that I discovered PDA: I had put S to bed and was doing the same as every night; spending another couple of hours trawling the internet for ideas of what this was or for someone else who was also trying to help someone like S. As soon as I found it, I knew this was it. In fact, after reading the only two books that at that time were written on PDA I sat quietly amazed not because any of this was new to me but the realisation that most other people DIDN’T feel like this. I could finally put a better label on myself than mad. And I was very thankful for that.

With a change in parenting style, it took just under 3 weeks for S to start to respond. It took me a lot longer to develop the required thickness of skin to the looks and comments we receive from family and members of the public when they hear how S and I interact - he has no sense of hierarchy or authority so I talk to him as I would my best friend or a workmate rather than my son and not everyone agrees with that. But since then, little by little, life has got easier for S and easier for me because now I understood what we were both dealing with. By helping him appropriately so that he has less meltdowns, it means that I'm not becoming completely overwhelmed or being overwhelmed for so long, which means I am more available to help him. It has been an upward spiral for us that for the most part continues in that direction. I have managed to attend the PDA Society’s annual conference in Reading and got the chance to shake Phil Christie’s hand and thank him for the email conversations we had, even though I’d been unable to contemplate making the journey with S to see Phil and get a diagnosis. I joined Facebook and found the closed PDA groups initially to be a lifeline, not least to realise that S and I were not alone in facing these challenges and the awful solutions that schools are resorting to every day, certain in the knowledge that they know best when they have absolutely no idea about PDA. Fairly quickly it became apparent that I could offer good advice to other parents because of my innate understanding but I realised that my limited energies needed to be focussed on me and S; doing the very best I could for us.

For now, I’m pleased to be able to say that S is doing well at the moment. He’s been at a local special secondary school which caters for moderate learning disabilities for 18 months now, he’s settled there and enjoys going to school. With a very understanding bus escort, he even manages school transport....just! I have no regrets now about planning his move to secondary school 3 years in advance, ignoring everyone else's advice that there was plenty of time and the sigh and vague shaking of their head. They felt they knew best but I knew that I knew better. Neither do I regret visiting 19 schools before deciding on the one he’s at, although it meant using up a lot of annual leave from work. S has a string of diagnosed disabilities and is termed complex special needs, although the one thing he hasn't been diagnosed with is PDA. However, the school have been incredibly supportive; always listening to me and making endless numbers of special provisions and adaptations for S, including now referring to PDA on his paperwork. The reality is that. without all of the right support, S would not still be there. Having said this, school and I still don't manage to get it right all of the time. S is like an unbelievably sensitive orchid; put him in the right environment with exactly what he needs and he’ll flourish. You’ll see a quirky, direct, funny, clever boy, who is honest to a fault but who has absolutely no understanding of authority. In the exactly right environment, he’ll cope mentally. However, deviate from what he can cope with or try to make demands on him and it will all unravel (quite literally) in an instant. With school and I are both on the same page, we are teaching and allowing S to use appropriate self-soothing strategies and working on helping S to learn how to self-advocate. I have just finished reading a new book called ‘My Child's Different’ by Elaine Halligan – her family’s story could not be more similar to ours if you tried and it’s great to hear how well her son is doing. It gives me hope for S and confirms that the strategies I use with him are the right ones…which is helpful on those days when I need a bit more fortitude to continue on.

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Thanks for taking the time to read. Comments are much appreciated, and sharing on social media could help get these posts to people who have still not heard about PDA. The PDA Society website has a huge range of information about Pathological Demand Avoidance.

For more reading about what Pathological Demand Avoidance is, please see my page 'What Is PDA?', and for an idea of how to help please read Strategies For PDA.

There's a chance PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a definite difference between the two conditions. My explanation can be found here in my post the difference between PDA and ODD.

A variety of other experiences of living with PDA can be read using the link Our PDA Story series.

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.

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?