Is Pathological Demand Avoidance real?

"Is PDA real?" or "is Pathological Demand Avoidance a proper diagnosis?" are two questions which I have often been asked. Some people don't believe in 'labelling' a child at all; others have told me they don't believe PDA is real. 

Pathological Demand Avoidance is a term first proposed in the 1980s by Elizabeth Newson, a developmental psychologist. In her clinics she saw many autistic children but she began to recognise a small group of these children who displayed characteristics that were different to the main group in some way. Elizabeth Newson's first peer reviewed publication on PDA appeared in the British Medical Journals back in 2003, entitled 'Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders'. In 2010, PDA research led by Francesca Happe began at Kings College in London and more research by other eminent practitioners continues to be published. 

Who decides on a diagnosis and how?

I'm not sure I've got the definitive answer to either of those questions for you, but I'll try to explain what currently happens. When deciding how to classify and diagnose, two manuals called the DSM and ICD are generally referred to by healthcare professionals. The DSM, The Diagnostic and Statistical Manual of Mental Disorders, is published by the American Psychiatric Association to guide the diagnosis of mental or psychiatric disorders. The ICD, which stands for International Classification of Diseases, is published by the World Health Organisation.

The latest version of the DSM, Fifth Edition, Text Revision (DSM-5-TR), was published in 2022. It involved more than 200 experts (according to psychiatry.org). The original version was discussed and brought together over a period of more than ten years. ICD-11 involved over 300 specialists from 55 countries (according to Wiki) and came into effect globally in January 2022.

I could fill more than one blog post with explanations of how autism is viewed and described in these manuals, but here is one quote which stood out for me, taken from the Autism Europe website:

...the ICD-11 and the DSM-5 do vary in a number of ways. For example, the ICD-11’s classification provides detailed guidelines for distinguishing between autism with and without an intellectual disability. The DSM-5, for its part, only states that autism and intellectual disability can occur simultaneously.

Sasha has a spiky profile (meaning extreme strengths in some areas alongside extreme difficulties in others) but that wouldn't necessarily be classed as an intellectual disability. Does that mean she wouldn't be given a diagnosis of autism by someone who only went by the DSM-5?

The internet is full of brilliant articles which cover and dissect topics like this. I don't consider myself very 'high-brow', so I tend to end up talking in layman's terms. In a nutshell, the term Pathological Demand Avoidance is not in these manuals; neither is Sensory Processing Disorder and yet I don't think the fact that a lot of autistic people have sensory issues is often challenged? Asperger's Syndrome (AS) used to be in the manuals (largely because it was 'discovered' over 40 years before research on PDA was first undertaken), but that AS term has now been removed in favour of using the over-arching term 'Autism Spectrum Disorders'. Although I understand the reasoning behind wanting to remove the term AS from general use, I still believe that characteristics relating to Asperger's Syndrome exists, as much as I believe that PDA exists.

So who decides on a diagnosis? Healthcare professionals. Individuals, who may be following guidelines of one manual or another, or both. Diagnosing is a very complex area, which is of course open to human error like most things in life.

Why we believe in PDA

In the early days, after Sasha was first diagnosed with autism, I met regularly for coffee with some other mums who also had girls diagnosed on the autism spectrum. I loved meeting up with them; I felt part of a tribe who understood what it was like to have a child who was different from typically developing peers.

Every time we met though, I heard that their girls were quite different to Sasha in many ways. I'm generalising of course, but on the whole as a group they talked about how their girls liked routine, had obsessions about objects, were 'on the edge' of social groups and more comfortable being on their own, liked to follow rules and were scared of getting into trouble, very black and white about facts and didn't tend to role play or immerse themselves in fantasy worlds.

So whilst I felt welcomed and part of the group, I still felt like an outsider in a way. I still hadn't met anyone else with a child like mine. That's when I researched more on the internet, and stumbled across PDD-NOS (Pervasive Development Disorder Not Otherwise Specified, catchy term, huh?!). This was sometimes also called Atypical Autism, and included a huge variety of characteristics which didn't fall into the kind of behaviours my new group of friends were talking about. A short while later, some more reading online led me to descriptions of Pathological Demand Avoidance, and that's when I had my 'lightbulb moment'.

I returned to the paediatrician who had given our girl a diagnosis of ASD and requested a referral to the Elizabeth Newson centre which was where most experts in PDA worked at the time. We were told there was no funding available to enable us to go there but instead we were offered the chance of further tests at GOSH. Our experiences there are detailed in a few blog posts at that time; this one titled Great Ormond Street visit; High Functioning Autism or PDA? is a good place to start.

In summary we weren't given any change of diagnosis from the clinicians at GOSH. Sasha's paediatrician informed us she was unable to diagnose PDA herself as it wasn't in the diagnostic manuals, but a second line of oppositional behaviours/Pathological Demand Avoidance behaviours was added to her diagnosis letter.

PDA as a label

So the over-riding diagnosis which Sasha has been given is ASD. We agree with that; PDA is just one profile of ASD, but one which we feel fits our daughter better than the others.

It has been suggested that it doesn't help to 'label' our child with Pathological Demand Avoidance, particularly if it might not be a 'real' diagnosis. The whole debate about 'labelling' a child with anything is one I've touched on before; those who call it a label are maybe not appreciating the fact that it's a very important signpost, which should be just the beginning of research about any one individual. Research on PDA is a growing area of autism; understanding is still patchy in areas, but what we do know is that the groups of children who were noted by Elizabeth Newson displayed characteristics similar to our girl.

Social on the surface: Sasha would literally talk to anyone and seemed to enjoy being around others. I remember her once going and grabbing a postman by the hand, even though she had never met him before!

Obsessions with people rather than objects: Sasha had interests such as Dora and Peppa Pig in the early days, and now it's more Pokemon, Nintendo, Minecraft and Roblox, but these were never obsessions. I think that I, as the person who understands her best, have always been her obsession, and over time it's developed to a point where she doesn't want anyone else to carry out certain routines for her, such as bedtime, or getting her food etc.

Vivid imagination and ability to role-play: Sasha still to this day spends a fair amount of time running around 'in her own little world' with imaginative stories and scenarios coming out of her mouth. She's never been a black and white, matter of fact kind of person.

Resisting and avoiding ordinary demands: Sasha refused to do simple everyday things which we knew she loved to do, such as swimming, or going to the park - activities which were not part of our agenda but fun places for her to be. It became obvious that a major cause of the avoidance was the lack of control she felt she had over any given situation.

Using social strategies to avoid instead of simply saying 'no': I still remember vividly the first ever conference about PDA which I attended several years ago. It was held by the National Autistic Society and during the event, a video was played of a young child in clinic, avoiding all the questions put to him by giving answers which wouldn't be expected from a typically developing child. It brought tears to my eyes, as I recognised so many similarities with what our girl used to say and do - she would ignore requests (which led to several hearing checks... her hearing was just fine), she would curl up into a mushroom and pretend to go to sleep, she would give phrases such as 'my legs don't work so I can't'. At times she would change the subject and try to distract the person asking the questions or making demands of her.

These are only a handful of Sasha's behaviours which led us to finding out about PDA; many more examples are scattered through the earlier posts on my blog.

Would I mind if I was told to stop using the term PDA to describe my daughter?

Honestly, my answer to that would be yes, and no. I use the term Pathological Demand Avoidance because I feel it helps describe my girl to others in three short words, and it has given me a springboard to better describe her in more detail. Most parents would probably feel the same way I do; that three words are never enough to explain their child.

We've completed the EDA-Q (Extreme Demand Avoidance Questionnaire) with regards to Sasha at various times over the years and she always scores highly - that is to say, over 50, which is the point at which a profile of PDA should be considered.

Do I feel that Sasha is exactly like all the other people diagnosed with PDA? No, of course not. I've still never met another child quite like Sasha. Everyone is different, after all. But being part of a community of people who all feel like the term PDA 'fits' them or their child does bring some kind of inner peace, less isolation. Comfort is gained from people who understand the challenges that society presents us with.

Sasha is still young but I am looking forward to the time when she can tell us whether she feels that the term PDA helps her in any way. I do know that being part of the PDA community has helped me and countless other families so far. I see no good reason for others to suggest that the term is taken away, or to deny its existence.

It's important to stress at this point that the purpose of my blog from the very beginning was to share how life is for Sasha, from my perspective. The aim was, and still is, to educate others about Sasha and to consider the impact of her diagnosis on our family life. So I don't claim to speak for everyone, I'm purely giving our point of view. Pathological Demand Avoidance is very real for us.

For more information about PDA, please read the book shown below: 

'Understanding Pathological Demand Avoidance Syndrome in children' *

* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.

(Other PDA books can be found in my 

'Books about the Pathological Demand Avoidance profile of autism' review post.)

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

Books about the Pathological Demand Avoidance (PDA) profile of autism

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