Our PDA Story {Week 37}

Time for week 37 in my blog series 'Our PDA Story' which aims to shine a light on the experiences of other people and families living with Pathological Demand Avoidance.

I'm so chuffed (Northern word I think... translation = pleased) that so many others have chosen to share their stories via my blog; I know for a fact that it really helps other families to not feel so alone. I've had lovely messages telling me of how the posts in this series have given renewed energy and strength in times of need.

I'm delighted to introduce the writer of this week's post as Natalie Menagh, who was a speaker at the recent PDA Society conference. Natalie is mum to a six year old boy who has a diagnosis of ASD with traits of demand avoidance. She also happens to be a qualified SENCo and Assistant Head Teacher in charge of inclusion at a primary school, and this gives her insight into a world which many of us other parents don't get to see so close up. I'm sure though, that her family's experiences will be familiar to many.

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Will was born at full term. He had a difficult birth due to the cord being around his neck but he quickly recovered with oxygen. He was a placid and happy baby who was really engaging and funny. We noticed it seemed to take him a lot time to master sitting up, crawling and later walking only when he reached 18 months. He seemed to come to everything late but then make bursts of progress, although he had been watching for a long time and then only tried something when he knew he would be able to do it! He’s still the same….reluctant to try new things and waits until his anxiety subsides about his own ability before doing something.

I spoke to the health visitor at 20 months when no words were coming with his speech and she came to do his 2 year check the day after his second birthday. He failed his two year check and she was very concerned and referred him to a paediatrician, audiology and a speech therapist. The day he saw the paediatrician however was a very different day and he was 4 months older. He had a lovely time with her and showed good eye contact and social engagement so she felt he was perfectly fine. She did agree to review him a year later in case anything changed.

His speech therapist said he seemed ok and said I should come to expressive language sessions. He seemed to understand what was said to him but just wasn’t speaking much and what he did say was very difficult to understand. He was tested by the audiologist and they found glue ear in both ears. Everyone then agreed this must be the cause of his behaviours. He eventually had grommets fitted and his adenoids taken out just before the age of three and his speech came on quite suddenly after this. We started to think everything had been down to hearing. All the while, we had continuous reports from his nursery of him biting and hurting children. His behaviour still remained a concern despite speech coming along. Nursery referred him to a specialist teacher who recommended social skills type activities and after progress was made he was discharged by most.

He then transferred to a school nursery and this was when behaviour really started to show in this setting. He was referred to a child psychologist who identified possible ASD just after he turned four. I had seen two more paediatricians by this point, one thought he was ADHD and the other agreed he seemed ASD. He was referred for an ASD assessment but it just didn’t seem to fully fit.

He was so interested in being with other children and he seemed to be able to be so charming and appeared to have imaginative play skills due to his engagement in role playing. He also didn’t respond to visuals or rewards or structure. During this time I remember the real low we both felt, how sad and helpless. It has been described as ‘grieving’ and that seems like the right description of how it felt…processing the loss of something…a particular future or a particular life. I have never felt anything like it.

We continued to struggle with the idea of ASD for a couple of months but then the light bulb moment came. As a SENCo in a primary school I received some advice from a specialist about one of the children in my school and it was a description of PDA. Whilst trying to understand this in the light of this particular pupil, all I could think of during reading was Will. It described him with total accuracy. I showed my husband who straight away agreed. We googled PDA and looked at all the materials on the PDA Society website. We completed the checklist which really helped and we went straight in to tell the school. We started writing down ideas for strategies we had begun to use which really worked and spoke to his paediatrician and psychologist. They accepted that any strategies that were working were important to share.

My husband and I talked daily about the reasons behind his behaviours and we both read the book by Jane Sherwin and also the handbook by Phil Christie and Ruth Fidler. We even bought the school a copy. School had responded brilliantly and advertised a 1:1 LSA post for a child with ‘significant compliance resistance’ (a good way to describe our Will, I felt).

Since then we have gone from strength to strength, learning and developing our understanding all the time and bringing others with us on our journey. His school have been truly amazing and they really know Will and look beneath the behaviour to the anxiety below and respond so well to him. He is six now and doing so well but he has a massive amount of support and understanding from so many people. We have all worked so hard in developing this understanding in those around him. I tell as many people as I can about PDA and the impact it can have.

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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA.

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA.

There's a chance PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a distinct difference. More information can be found here: the difference between PDA and ODD.

A variety of experiences of living with PDA can be read using the link Our PDA story series.

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com.

The PDA Society website has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?