Steph Curtis was the latest guest on Anna’s radio show ‘All Things Autism’ on Women’s
Radio Station. Steph is mum of two girls aged 18 and 16; her youngest daughter Sasha was
diagnosed with autism at the age of two. Steph started writing her blog
(www.stephstwogirls.co.uk) on the day of diagnosis and gave it the name Steph’s Two Girls
because she realised that the diagnosis would also have an ongoing impact on the life of
Sasha’s sibling.

Steph has recently finished writing a book about her family's experiences, due to be
published by Jessica Kingsley in January 2024. The book will include thoughts from both her
daughters and offers a unique male perspective with a chapter written by Sasha’s Dad.
Steph talked about the diagnosis process and how that can be a postcode lottery for some.
She described the light bulb moment which happened when they came across the term
Pathological Demand Avoidance (PDA) and realised it described their daughter.

 

Steph says ‘I was delighted to be able to record this session with Anna – just like chatting with an
old friend! We talked about Pathological Demand Avoidance and how I think there are still so
many families who haven’t even heard of PDA. Understanding this profile of autism can make a
big difference to family life’. She explains that ’PDA Children and adults are said to avoid
everyday demands and expectations to an extreme extent. PDA individuals often seem sociable
(although they can lack understanding), they tend to have great imaginations and appear
comfortable with role play.

 

The phrase ‘can’t help won’t’ is often used, meaning that PDAers can’t help the fact that they
won’t, do things at times – they are unable to. Refusal can be down to many factors, such as
sensory issues or fear of the unknown, but it can also be due to extreme anxiety or an innate
drive for autonomy. Children are often said to be naughty and parents are blamed or judged
for their bad behaviour because it can be difficult to see the underlying causes of their
anxiety.’

The PDA Society is a national charity run by parents of PDA children and PDA adults. There
is a wealth of information about PDA on their website (www.pdasociety.org.uk), and they
offer advice to parents and carers via web forums and an email contact helpline. They are
involved in further research and also run training courses all about PDA for parents, carers,
educators and medical professionals.

Steph has written a blog post suggesting some different ways to help children with PDA and
she pointed out that these approaches can be used in education settings too. Steph
suggested it helps to ‘reduce the demands as much as possible. Offer choices, but only a
couple at a time so as to not be confusing. Plan ahead, but always be flexible and have a
plan A, B, X, Y, and Z. Stay as calm as possible because any sign of anger or rushing in
your voice increases anxiety. Build trusting relationships – understanding is so important.
Use the right language – humour works really well, but also try not to use words such as
‘must’, ‘have to’ ‘should’ or ‘need’ unless in a real emergency.’ More detail is in her blog post
titled ‘Strategies for PDA’.

Steph discussed the challenges that the education system has produced for her daughter
and many other children, and also touched on the difference between PDA and ODD
(Oppositional Defiant Disorder). Steph has a post on her blog explaining in detail but in
short, PDA is a Spectrum condition whereas ODD is not. It’s also important to recognise that
strategies helpful for ODD are not found to be effective with PDA.

Steph can be found on Facebook, Instagram and Twitter as @stephstwogirls. Sign up for
her email newsletter via her blog for more information about her upcoming book.

 

www.womensradiostation.com

 

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