For our May Check In and Chat we were thrilled to welcome Steph Curtis, a local Hertfordshire mum of two teenage daughters, now aged 17 and nearly 15, who talked to us about her family’s PDA journey and hosted a very busy Q&A session!
Steph began blogging at www.stephstwogirls.co.uk over twelve years ago when her youngest daughter Sasha was diagnosed with autism at the age of two following an initial self-referral to speech and language. Steph explained that when she started her blog it was initially to keep an online diary of what was happening when for her own records and to help with meetings with professionals. But she also wanted to let friends and family know what was going on. At two and a half Sasha looked to many people like a typical toddler having fairly typical toddler tantrums for example – and Steph wanted to people to understand there was much more to it than that.
Steph didn’t discover PDA immediately. She would often meetup with other mums of Autistic girls when Sasha was much younger and come away thinking ‘that kind of sounds like our girl but there’s something a bit different about her’. She even began to question if Sasha was actually autistic. On one occasion, late night googling for more atypical presentations of autism led her to a description of PDA from what is now The PDA Society. These descriptions fitted Sasha so well and Steph has her PDA lightbulb moment… “THAT’s what it is! It all makes so much more sense now!’
Steph explained that PDA is best described as an anxiety driven need to be in control. Deep rooted anxiety sits at the heart of PDA. This isn’t control for control’s sake – it’s a primal need to keep anxiety levels low and control is one way of doing that.
She went on to outline some of the characteristics of PDA she recognised in Sasha:
- A passive early history
- Resistance to ordinary everyday demands
- Surface sociability but with a lack of depth of understanding
- Excessive mood swings often described by parents as going from 0-100 really, really quickly!
- Very comfortable in role-play and pretending
- Special interests or ‘obsessive’ behaviour that tends to be quite social – ie more about people than items
Steph explained that it is difficult to get a PDA diagnosis and recognition of PDA is often inconsistent. You can find out more about diagnosing PDA here (https://www.pdasociety.org.uk/life-with-pda-menu/family-life-intro/diagnosing-pda-children).
Steph’s personal advice is to not exhaust yourselves trying to get the diagnosis – it isn’t a holy grail – instead concentrate on the strategies and approaches that can help your child at home and in education if they are accessing it. If you do go for a diagnosis then collecting evidence of eg what approaches you’ve tried and why typical parenting strategies such as rewards and consequences haven’t worked will help!
Steph talked about education – a survey by the PDA Society a few years ago now found that something like 70% of children with PDA found education difficult. This isn’t surprising – PDA is all about too many demands increasing anxiety beyond an acceptable level and we put so many demands on our children before they even step foot inside a classroom – get up, go downstairs, get breakfast, get dressed, brush teeth, do hair, get bag, put on shoes etc. Steph talks a lot about her family’s education journey on her blog. Sasha doesn’t access education anymore – not through lack of trying and not because she doesn’t want to but because she can’t. Protecting Sasha’s mental health has always been their priority and Steph recommended the group Not Fine in School for anyone struggling with school anxiety.
Talking of mental health Steph is a strong believer that using PDA approaches does help with mental health. Some of the approaches she outlined included:
- Being flexible
- Developing trusted relationships
- Planning ahead: Plan A, B, C and Plan Z for anytime they go out anywhere
- Offering choices (but not too much as can be confusing)
- Choosing words carefully (simple language often helps)
- Trying not to use the word ‘no’
- Using humour – this worked particularly well when Sasha was younger eg slap stick humour to lighten the mood; being a bit silly generally!
- Remaining calm – still very difficult to not react to frustrating situations and it’s very tiring as so much mental effort goes in every day to trying to get situations right. Something all the parents on the check-in-and-chat were quick to corroborate.
Continuing the theme of protecting her daughter’s mental health Steph reflected that overall Sasha now lives a pretty demand-light life at home. For example they don’t insist she eats food at the table, there are no screen time restrictions (Sasha responds well to screen time and is a way for her to de-stress), they won’t make her visit family etc. In response to a parent asking about tone of voice, Steph also shared that when anxiety is really high Sasha is particularly sensitive to tone of voice so moderating that and often speaking less is also key. Steph reflected that theirs is quite a quiet household – that’s not how she necessarily wants it to be but it is how it is. This is what works for them, right now.
Before answering and signposting lots of questions about education, strategies and approaches, later-life, masking, medication, helping young people understand and accept autism and PDA and so much more, Steph reminded us all of the essence of her girl – above all she is funny, imaginative, creative. Steph’s love and her advocacy shone through the whole of the evening.
There was a huge amount of interaction, questions and so importantly support on the chat today. A big thank you to everyone who took part.
And a big thank you to Steph for spending the evening with us. Steph is writing a book about PDA – keep an eye out for it when it’s published!