Steph Curtis started blogging over six years ago at Steph’s Two Girls when her youngest daughter Sasha was given a diagnosis of ASD. It is believed that she actually has a specific type of autism known as Pathological Demand Avoidance (PDA).
Steph is keen to raise awareness of this condition and runs courses for parents to help with strategies for everyday life with PDA.
1. When did you first realise your child has Pathological Demand Avoidance (PDA)?
We first referred our daughter for speech therapy just after her 2nd birthday as she was making plenty of noise/sounds but no clear words. The speech therapist who assessed her referred us straight on to a paediatrician, saying that was just routine. Our girl was 2 and a half at that appointment with the paediatrician when autism was first suggested, and a month later the ASD (autism spectrum disorder) diagnosis was given. It was probably a year later, after I'd had a 'lightbulb moment' when reading about PDA online, that the secondary diagnosis of pathological demand avoidance behaviours was given.
2. How did you feel when you found out that your girl has autism?
Relieved. Although it came out of the blue, it helped to explain certain issues which had been occurring in the first two years of her life. Such as times when she'd scream hysterically if we took a different path to nursery, or when she got extremely upset and refused to wear any socks ever (even when it was snowing outside!)
3. Where did you first turn for help?
There was a group in our county set up specifically for girls with autism, as they tend to present differently from boys in many cases. The group was called Spectrum Girls and they had a regular monthly coffee morning in a town 20 minutes away from where I lived. I made the effort to go along regularly and met some wonderful mums who are still friends six years later.
4. What advice would you give a parent who suspects or has just found out that their child has PDA?
The PDA Society has plenty of advice and strategies and their website (www.pdasociety.org.uk) is worth checking out. I'd also suggest joining as many local groups as you can and sign up to all emails; as parents of children with additional needs, we learn all the best information from other parents and you just never know when you might hear or see a nugget of info which can help your child massively.
5. What exactly is PDA? Did you know what it is when it was first diagnosed?
PDA is a specific sub-type of ASD, just as Asperger's Syndrome is another sub-type. It is characterised by extreme anxiety when not in control. The phrase 'can't help won't' describes it perfectly - it's not that the child doesn't want to do what is requested, they just can't do it as the demand being placed on them can exceed their skills to deal with it. The National Autistic Society has more information on their page too:.
Just as I knew very little about autism when it was first suggested to us about our girl, I knew very little about PDA - but I have since read and researched a great deal.
6. What are the biggest challenges facing your child and your family?
The biggest challenge will always be trying to ensure others understand how this affects our girl. Autism is a hidden disability, and although general awareness of autism is increasing slowly, this particular type of autism needs different strategies to those children who have classic autism. Every child is different of course, so the real challenge is teaching everyone just how different our girl is and what help she needs. The school system is particularly difficult and whilst primary education has just about worked so far, secondary school is going to be a huge challenge for us.
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
Having a positive attitude definitely helps as you can very easily get swamped by all the paperwork and the number of meetings that are needed. The other vital help is a great support network, both online and locally, so experiences can be shared and learnt from.
8. What has surprised you the most about raising a child with PDA?
Funnily enough, the most surprising bit is how much NT (neurotypical, as our older girl is) children learn and pick up without being specifically taught it - who ever told you how close to stand to someone else without invading their personal space, for example?! Most people just learn this by watching others, but autistic children may not be as aware.
9. What’s the main bit of/the best advice you’d give another parent who has a child with PDA?
Be prepared to change your lenses. This is parenting, but not as we know it.... in other words, 'traditional' parenting, where you are in control and always call the shots, rarely works with PDA. Neither do rewards and consequences. You can still teach boundaries without the need for this. You also need to stop worrying about other people's opinions of how you parent.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
That everyone has different challenges in life. You never know what other people may be facing, so don't judge.
Thank you so much for agreeing to take part in the series Steph. I agree with you about having a positive attitude and love your phrase, '...be prepared to change your lenses...' that is brilliant.
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