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Helen self-identifies with a PDA profile and sees the same traits in other family members including her daughter and her Mum, with mutual understanding across the generations having led to an instinctively collaborative and compassionate approach to both parenting and education. Passionately believing that our education system is not fit for purpose, despite being a highly qualified education professional, Helen has chosen to home-educate her daughter and describes the process as a ‘dance that goes back and forth and a journey of trust’. This is their story …

I discovered PDA at around age 40 and initially dismissed it as yet another attempt to pathologise what I deemed to be pretty ordinary behaviour. I’ve always strongly wanted to avoid every day demands, found other people very confusing, had periods of intense focus, struggled with mood and been really good at playing various roles to get by in the environments I found myself in – I just assumed this was everyone’s experience!

At age 41, I came back to it – by now my daughter had reached compulsory school age and, just as planned since she was 18-months old, she is home-educated. The decision to home educate had nothing to do with any perceived special needs, cultural beliefs or even particularly negative personal experiences of school; it may perhaps have been influenced by her end-of-August birthday which left us having to decide if she would be the oldest or youngest in her school year group (neither of which seemed a good fit for her), but mainly it was the result of my being a fully qualified teacher and having worked in education, including education policy, for 20 years - plenty of time for me to realise the system is utterly inflexible and not at all suited to helping the majority in it to thrive.

In taking on this responsibility I was minded of the fact that her Dad has a dyslexia diagnosis and has often suspected autism in himself. I began to read more about autism and the autistic lived experienced; I kept coming back to PDA and recognising these traits in my daughter. As an infant she needed constant motion, woke every 45 minutes, desperately needed me by her side, hated too many people and too much noise, had little interest in toys and, as she grew, needed a very imaginative, playful approach to help make it OK to do the things that formed our days. At five she has developed intense interests and passions; most of her play and learning is linked to them in some way and demands that are presented through those lenses are totally manageable for her.

During 2020, coronavirus gave me the freedom I’d been craving all my life – released from so many social demands, I had been given the gift of time. Introvert by nature, I thrived at the start of the pandemic, felt in synch with my inner rhythms for the first time ever. Using this new-found time, I bit the bullet and sat down with various PDA questionnaires and diagnostic criteria and figured, yes, I can see a lot of this in my daughter ... and to my surprise, I saw it in myself to an even greater degree. I had assumed I was ‘neurotypical’. When I look back, it is clear I have had a life-long relationship with anxiety, which has never been debilitating because I was very well supported by my mother and maternal grandparents. I’ve skirted eating disorders, had full-on panic attacks resulting in unnecessary trips to A&E, been told I have mild bipolar disorder and have been medicated with mood stabilisers – it sounds dramatic but it was all pretty by the by and didn’t interfere with me doing well at school, having amazing friends, getting a degree, an MA, an MPhil, a teaching qualification and working as a journalist, education advisor and higher education lecturer.

In discovering PDA, I have come to realise that any issues with anxiety I’ve had always cropped up in response to demands I was struggling with. I remember how the demand of getting dressed for school in the morning made me feel physically sick, how I cried being dropped off every day for years but masked beautifully in the classroom, rarely drawing attention to myself apart from on occasion being spotted for being a bit too withdrawn. I wanted nothing to do with birthday parties or after-school clubs; I was exhausted from masking five days a week at school. The most thrilling day of my primary school career was when the 1987 hurricane meant I arrived at school to find the gates delightfully closed and my Mum had to take the day off work and we went to buy candles from the hardware store because the electricity was out – we hunkered down at home away from the world - bliss.

I thrived in secondary school – it gave me a kick that the one I went to was considered ‘second best’; the competitive prep school I had attended prior to this expected me to progress to a more prestigious school but the one I went to suited me and my Mum fully supported me in choosing it. In that environment, I finally began to thrive – I was drawn to the wooden-benched science labs and inclusive, friendly ethos and it was a good fit right the way through to the sixth form where I got slightly disappointing A levels because I sabotaged them. I turned up to class and wasn’t disruptive but I only did the bare minimum because I felt the school had curtailed my A level choices, pushing me towards subjects in which I could easily get good grades rather than the ones I was actually interested in. I was predicted A grades and there was a clear expectation that I should apply to Cambridge; I did neither and although I still got my A levels at lower grades, the school was so surprised they appealed the results with the exam boards. My BA was an ‘expectation’ that I got through with some panic attacks along the way. Throughout my entire education I was always looking forward to being ‘free’. Thereafter though, I freely chose my MA and MPhil and thoroughly enjoyed doing them.

I feel my Mum struck a balance with me; she divorced my fiery tempered, controlling, manipulative, coercive father (perhaps a poorly supported PDAer?) and so she had to work and therefore I had to go to school. She worked hard to pay to send me to independent ones with smaller class sizes she felt would suit me better ... and I was indeed able to tolerate them and later even do pretty well in them (at secondary school I was Head Girl, won public speaking competitions, had good friends, was immune to peer pressure and even at times looked forward to the school holidays being over) but I am minded that all of this did come at a cost to me. I was never really free, I was always mired in ‘shoulds’ and expectations from all sides.

Although my Mum didn’t put me under huge amounts of pressure as many of my peers’ parents did, she had ideas about how I should turn out, how I should behave and perform. She helped me navigate systems I wasn’t well suited to in order to achieve measurable outcomes. So yes, I have qualifications, am financially independent and to all intents and purposes look reasonably successful. At the time I was growing up, my Mum did the best for me that she could, I always felt she was on my side and I am grateful for that and we continue to have a good relationship. I think she instinctively did this because she could feel what it was like to be me. She understood that it felt very hard meeting all the expectations, she recognised in me her own tendency to find other humans baffling and she taught me how to play the game. We are both excellent hosts, appear confident in a crowd, and are adept at saying the right thing to put people at their ease, but it’s something we work at rather than something that comes naturally. We have learnt that things go more smoothly if we do and have both been on the receiving end of someone trying to maintain control in other ways (my angry, manipulative father who I chose to stop having contact with at 13 for example).

For a long time I’d described myself, my daughter, mother and maternal grandfather as introverts and that may well still be true – none of us are particularly energised by large gatherings and prefer solitude, needing a good amount of it to be able to engage meaningfully with the world and others in it. When I discussed the distinctive features of a PDA profile of autism with my Mother she could easily identify them in all of us. It seems we are from the same mould. I remember my grandfather grumpily anticipating family gatherings but then appearing a social butterfly at them, then needing to crash afterwards to recuperate. Too much social and he’d get obstreperous. My Mum was the same; her job involved hosting huge conferences, making vast amounts of small talk (which she loathed) and for days afterwards she wouldn’t be quite herself until she’d got over what it had taken out of her. My daughter has clear ‘restraint-collapse’ (this is where children mask and ‘hold it together’, appearing to behave well in settings they may not necessarily be comfortable with and then meltdown at home when they feel safe to do so) when she’s spent time in places or with people that are too much for her, and I am irritable when there are too many demands. I am very conscious that I have deliberately orchestrated my life now so that demands are low, much lower than when I was younger and before I was a parent. Comparing the ‘demands’ of my life to those of others, I used to feel pathetic in comparison, but since discovering PDA I now feel like that’s just how I am and that’s OK.

Having followed a fairly traditional and expected path well into my thirties, things unravelled a bit when a job I had loved no longer seemed a good fit. The environment had become toxic to me. I needed out. My then husband couldn’t understand it; ostensibly not much had changed, I had a good salary – he just couldn’t understand why doing a relatively plum job had become so intolerable to me and I felt utterly unsupported by his bewilderment. The marriage broke down and since then I feel I have been following a path getting back to my true self. I have engineered a life with my new husband in which we both work part-time doing things that chime with our values and that give us the freedom and flexibility to pass on that freedom and flexibility to our daughter. I am hopeful that in choosing this path, offering but not forcing opportunities and encouraging her to grow as a self-directed learner, interacting with formal learning as and when she chooses it rather than us dictating what she needs, she will be buffered against some of the systemic and expectation-induced anxiety I experienced during my education. So far, so good. She’s happy and she’s learning.

On having a couple of hugely uplifting and enlightening telephone chats with the amazing people of the PDA Society, I am heartened to be told that it sounds like I have instinctively been doing what would otherwise be called ‘early intervention’ with my daughter. The ‘strategies’ recommended for PDA children are just the way I always brought her up – I was just trying to be compassionate and respectful towards her.

She is currently using her obsessive interests as a vehicle for learning; I don’t impose any curriculum, learning just falls out of self-initiated projects. I am really clear that sometimes I overstep the mark with my own ingrained expectations or hopes and have to consciously draw back, and then she’ll get right back to learning what she needs to. It is a dance that goes back and forth and it is a journey of trust. I trust that she will learn and I hope she trusts that I will support that. Imposing learning on her would ruin our relationship or force her into environments where I think she would mask and probably do OK ... but I don’t want her to do OK in a standardised system, I want her to thrive in her own way. Discovering PDA has given me renewed confidence to continue to go against the grain. It’s not always easy but it is so rewarding.

I hope that sharing our story will provide some hope and contribute to the growing realisation that it’s not our children who are broken, it’s the systems we try and put them in, and that by speaking about it and taking action in whatever ways we can, we can create positive change.

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