PDA Awareness Day (Pathological Demand Avoidance)

I wrote about Pathological Demand Avoidance (PDA) recently as part of World Autism Awareness Day. However, as today is PDA Awareness Day, I couldn’t let the day go by without writing a quick update on the subject!

Firstly, I want to say a huge congratulations to Fiona (my SIL) for successfully running the Milton Keynes marathon at the start of this month. She did amazing and raised a whooping £1290 in aid of the PDA Society. Well done Fi!

Autism, Pathological Demand Avoidance, PDA, SEND, The PDA Society, PDA Awareness Day, Milton Keynes Marathon, charity, fundraising

This is a photo of Squiggle running alongside her for a few metres to cheer her on, I absolutely adore this picture, and check out the message on the back of her top too! (Squiggle was thrilled when she saw it!!!) 

Autism, Pathological Demand Avoidance, PDA, SEND, The PDA Society, PDA Awareness Day, Milton Keynes Marathon, charity, fundraising

The other thing I want to share is PDA Society‘s brand new ambassador…

If you can, please share some info on PDA to help increase awareness and understanding, and/ or change your profile picture to the giant panda logo for today. 

PDA society, PDA panda, pathological demand avoidance, PDA, autism, ASC, SEND

And don’t forget to share this post too! Thank you 🙂

Further Reading:

Books

Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals by Phil Christie et al

Can I tell you about Pathological Demand Avoidance? by Ruth Fidler and Phil Christie

Pathological Demand Avoidance Syndrome: My Daughter is NOT Naughty by Jane Sherwin

Websites

www.pdasociety.org.uk

www.thepdaresource.com

Blogs

memyselfandpda.com

www.stephstwogirls.co.uk

dinkyandme.wordpress.com

Sally Cat’s PDA Page

*Please note the Amazon books are affiliate links. This means I get a small referral fee on purchases. It does not cost any extra to the buyer. Thank you for supporting me in this way.

Pathological Demand Avoidance: World Autism Awareness Day

As it is World Autism Awareness Day, I would like to share some information on a lesser known type of autism, Pathological Demand Avoidance (PDA).

“Pathological demand avoidance (PDA) is increasingly, but not universally, accepted as a behaviour profile that is seen in some individuals on the autism spectrum.

People with a PDA behaviour profile share difficulties with others on the autism spectrum in social communication, social interaction and restricted and repetitive patterns of behaviours, activities or interests. 

However, those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behaviour is rooted in an anxiety-based need to be in control.”

The National Autistic Society 2017 

Children with Pathological Demand Avoidance (PDA) do not often respond to typical parenting techniques or even the usual strategies for autism. These approaches either do not work or make the situation worse. Effective approaches to best support PDA children are quite different and therefore it is important for people to understand this.

Natasha, who writes over at unschoolingaspies.blogspot.co.uk, says that being flexible is key. “The more inflexible the child, the more flexible (and creative!) the adult needs to be.” So true!

Amelia has one word of advice for other PDA parents: “patience“. I couldn’t agree more! Lots of it. 

Further information on useful strategies can be found on The PDA Society website.

In terms of educational approaches, again The PDA Society website has an excellent educational strategies booklet from Positive PDA available for download here. The Autism Education Trust have also created this PDF document ‘Strategies for Teaching Pupils With PDA’ sponsored by Department for Education.

Kayleigh, A parent of a PDA child, also advises that PDA families “find people who are understanding”. I wholeheartedly agree. I feel that awareness, acceptance and understanding are essential. 

On that note, I was thrilled when I found out that Fiona is running the Milton Keynes Marathon to raise awareness – and funds – for PDA. She has already reached her £1000 target for The PDA Society, which is amazing! Of course, further donations are warmly welcomed!!! If you would like to sponsor Fiona, go to her Just Giving Fundraising Page.

Pathological Demand Avoidance, PDA, autism, World Autism Awareness Day, The PDA Society, SEND, ASD, ASC, charity, fundraising, events, marathon
Fiona in training for MK marathon

Further Reading:

Books

Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals by Phil Christie et al

Can I tell you about Pathological Demand Avoidance? by Ruth Fidler and Phil Christie

Pathological Demand Avoidance Syndrome: My Daughter is NOT Naughty by Jane Sherwin

Websites

www.pdasociety.org.uk

www.thepdaresource.com

Blogs

memyselfandpda.com

www.stephstwogirls.co.uk

dinkyandme.wordpress.com

Sally Cat’s PDA Page

*Please note the Amazon books are affiliate links. This means I get a small referral fee on purchases. It does not cost any extra to the buyer. Thank you for supporting me in this way.

100 Days of Home Ed #LoveHomeEd – Day 23 (Witts in the Wild)

We never planned as a family to home educate, we always thought Chloe would do the expected and common thing… go to nursery, go to primary and so on,  when Chloe was diagnosed with autism and PDA at the age of 5 we were under the impression she would be given help, but unfortunately due many factors we did not receive very much and after constant pushing and exhausting meetings we felt let down by the system, I was and certainly Chloe was at breaking point. 

A friend of mine was a teacher and now a home educator and I asked for some advice as I was looking into part time school , I joined a few groups online and asked lots of questions. We made the careful decision for our daughter to get her back to her happy self, as she was very, very damaged by mainstream school. I de-registered Chloe and started our home ed journey.

#100daysofhomeed, #LoveHomeEd, 100 days of home ed, freedom to learn, guest post, Home Education, SEND, PDA

We have been educating at home for two years now and the transformation in Chloe has been tremendous. Her confidence and capabilities are expanding. We have been careful to choose what works for Chloe, as her PDA prevents her from many experiences and you have to get very creative to get her on board; it’s hard work, it’s exhausting and sometimes a little isolating but at the same time it’s very rewarding, and beneficial for our child and family. 

All of our health has started to improve. Chloe actually eats and drinks more, she also enjoys the outdoors and we try and do something involving nature; we have our own little veg and fruit garden area, and we have had a butterfly garden kit which was very captivating. We have been blessed to have met some great home ed families, and their understanding and support has been lovely.

Each day is not the same, we are very topic-led so we follow Chloe’s interests. We dip into the curriculum but follow our own learning path that suits Chloe’s needs- she is high functioning so sometimes it’s hard keeping up with her; the conversations we have are very amusing and very adult like, and I savour every moment.

What I enjoy is our precious time spent together and our new way of life; when we walk somewhere we will stop smell flowers, identify butterfly species – we are never in a rush to go anywhere. We are not getting fed up of each other which I honestly thought being together would drive us both crazy but to be honest it’s natural, it’s meant to be. Our relationship is alot stronger and my understanding of her ways and what she can cope with grows. She is alot calmer now; happier and less anxious. We still have times that are hard for Chloe to cope with but we can now be flexible to accommodate that.

I had run a creative sewing business for 2 years and had to become flexible and say goodbye to it to focus on her. My hope is that she will learn that she can work for herself too though, and to have a lifestyle of her choosing and have a very happy and content life from her upbringing and support.

Read more about Chloe and her adventures at Witts in the Wild.

PDA Awareness Day

Today is PDA awareness day so I made this brief info video. Apologies if anyone feels that the video moves along abit too fast and is therefore hard to take it in. If so, this is actually a good demonstration of how the world can feel for someone with sensory processing difficulties, which is often one of the many challenges faced by those with PDA (and other types of autism). Pressing the pause button will help with reading and digesting the information if needed, not as simple in real life!