Monday, 22 February 2021

Autism, Masking and Pathological Demand Avoidance (PDA)

Over the past eleven years I've published many posts on this blog, sharing some of our experiences of living with the Pathological Demand Avoidance (PDA) profile of autism. I started writing entries the day our younger daughter was diagnosed autistic and have covered a variety of ages and stages since then. 

One aspect of life which has probably not changed much over those years is the way in which parents are judged. All parents are judged at times, but in particular those who have children with additional needs or disabilities which are less obvious. I feel lucky because throughout those eleven years I have received hardly any negative comments, either online or in 'real life'. There was one (which I wrote about here) but the balance has been very firmly tipped in the way of general understanding and support.

If I had not chosen to be so open and public about the challenges our girl faces, I wonder whether I would have felt more isolated and judged over the years. I've always maintained that one of the reasons I've been able to write so much about PDA is because our daughter acted in a similar way at school or with other people as she did when at home with us. Her anxiety and avoidance were always there when she was young, for all to see. 
photo of a girl from behind, girls is half hiding behind tree looking over field. text states 'Hiding in plain sight. Autism,PDA and masking'
Despite that, it doesn't mean that everyone agrees with me about PDA though. I'm well aware that there are friends and even family who don't accept all that I say. I've not been directly challenged by them, I just know from certain words or phrases that have been used at times. I'm happy to be challenged, and I love a good discussion, but when it comes to it, no-one else can argue that they know my girl as well as I do. PDA is very real in our house.

James from Stories About Autism caught my eye recently when he posted about how one of his boys has managed to do tasks when away from home with his carers, things which were impossible for James as a parent to achieve. Such as putting gloves on, or trying new foods. We've also experienced this and I know that many other parents would agree, additional needs or not, that children sometimes do things for other people that they won't do for their own parents. It's a fact of life, and it makes me smile. Although I can see why outsiders would then feel that it's the parent who is at fault for not being able to make their own child do something... sound a bit familiar, PDA parents?!

Our autistic girl has rarely masked, although we did see glimpses of it when she was at her most recent school. Over the years I have spoken with lots of parents, including those who believe their children fit the PDA profile, and many of them feel that their children do mask their difficulties at school. There's often talk about the 'coke bottle effect' - the children hold in all their anxieties and struggles during the day but then explode when they are back in a familiar, safe environment after the school day. 

In her book The Spectrum Girl's Survival Guide, Siena Castellon, a young autistic female, describes masking as being 'when we try to hide being autistic so that others will accept us'. Trying to fit in, suppressing autism characteristics so as to be accepted socially. Parents will sometimes know this is how their child is behaving if the parents have any understanding of autism themselves. Depending on circumstances and environments, some children are able to mask for longer than others, but for many the secondary school level of education is where everything becomes much more difficult.

The following video was made by an autistic girl called Hollie who is talking about her own masking. Hugely insightful and I definitely recommend watching! Hollie talks about one positive (in a way) and the negatives of masking:
Hollie goes on to explain about how exhausting masking at school is, and the need for silence after a day at school. School and the challenge the system brings is a whole separate topic in itself of course. I'm hoping to explore that in more detail in a new series called 'Not Fine In School' on my blog over the coming weeks. Many of the parents I've spoken with over the years believe that their children present with a PDA profile of autism at home. Due to lack of 'proof' of this behaviour in another setting though, the parents are not believed. 

My question is always 'but why?'. Why would parents make this up? I think there's an underlying assumption that parents who cannot get their children to follow rules and comply with demands are lazy or inept. Either, or both. But I can categorically say, given that we have another child who we don't need to parent in a PDA way, that it is much easier to follow a 'typical' parenting style. We are definitely not perfect, but we are being neither lazy nor inept at parenting generally.

Over on my Facebook page I recently shared this poem written by Karen, a mum of autistic girls. It has been shared hundreds of times since and judging by the comments, there were clearly many, many people who related to it.

She seems alright to me

A Christmas concert, the music loud,
the children are happy the parents are proud,
I look at my daughter, stood there with her friends,
I can see in her eyes she hopes it will end,
I report to her teacher what I can see,
her reply is, "She seems alright to me!"

Coffee with friends at the local ball place,
anxiety I see in my daughter’s face,
their children play, mine sits by my side,
until pressured by my friend to go on the slide,
fear in her face I can plainly see,
my friends reply, "She seems alright to me!"

A day at the zoo, grandparents in tow,
my daughter had really not wanted to go,
too much unknown, her anxiety high,
but she knows she must come, she knows she must try,
I know how hard for her all this will be,
her grandparents reply "She seems alright to me!"

I collect her from school, she looks tired and down,
as soon as we're home my smile turns to a frown,
as the melt down begins, my heart breaks in two,
I hug her and calm her, what else can I do?
next day I tell school of the problem we see
their standard reply "She seems alright to me!"

The act she puts on will take its toll,
her mental health strains under this role,
her energy burned out, her days are so tough,
the safety of home can't come quick enough,
so when a parent tells you what they can see,
please don't say "She seems alright to me!"


As I said, masking hasn't been a big feature in our autistic girl's life. But there have definitely been occasions when other people have thought Sasha 'seemed alright' when she really wasn't. It is so vital to understand every little change in her, to know what makes her tick, and to realise what she is not saying because despite coming across as fairly 'aware' and articulate, she's not yet capable of expressing herself fully, especially at times of frustration. 

I believe masking is an aspect of autism which is not talked about often enough. Masking does relate to some with ADHD too, which I know might seem hard to believe because the focus has generally been on the 'hyperactive' element of ADHD - but that's another huge topic for a separate blog post.

At times I've felt guilty and partly responsible for other parents not seeing autism in their own children, particularly those who have children who mask and who appear closer to 'fitting in'. If those parents know me, and know our girl, then a natural thought process may have been that their child is not like our child. So how could their child be autistic too? There have been occasions when other autistic children have met our girl and struggled with the knowledge that they are both diagnosed with autism and yet both so different - how can that be?

That is why I'm so passionate about educating others about PDA. Autism as an over-riding diagnosis really doesn't explain the differences and the individual characteristics, or direct anyone to what approaches would work best. PDA is at least an indicator, a way of highlighting some of the autism features which are not often talked about.

There is another issue which sits alongside the one of masking and that is the number of children who are missed when it comes to getting a diagnosis of autism. Caro (@spikey on Instagram) talks very eloquently about this and about PDA in a recent podcast with Sir Simon Baron-Cohen for St.Martin's Challenge
Black background image with white writing introducing the podcast from St. Martin's Challenge talking to Caro Tasker and Sir Simon Baron-Cohen
I'm definitely on board with Caro's motion to change the discriminatory model of questionnaires and tests which were created to identify a certain presentation of autism - one which is more commonly seen in boys, and one which doesn't reflect girls like ours. There are also boys going undiagnosed - the quieter boys with more subtle presentations, or the boys like my girl, sociable on the surface but anxious and avoidant. Children who are not so well understood.

There is still so much to learn about autism, PDA and neurodiversity as a whole. I guess I just hope for more research to be done, and for people to keep open minds.
Pinnable image with text Autism, including PDA (pathological demand avoidance) and masking



For more information about PDA, please read the book shown below: 
* 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.
Book cover for Understanding pathological demand avoidance syndrome in children, by Phil christie, margaret duncan, zara healy and ruth fidler
(Other PDA books can be found in my 

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?




To follow me on other social media channels, you can find me at the following links or click the icons below!


Email Me Subscribe Bloglovin Twitter Facebook Pinterest Instagram YouTube

4 comments:

  1. Fantastic blog. When my daughter first went for diagnosis it was not progressed to pathways as she masked in school. The pediatrician even said I would be lucky to get it and that there were thousands of girls mis-diagnosed with mental health problems like bipolar and eating disorders that they now believe are autistic and that the screening questionnaires used are too boy focused etc. Second time round it had finally been picked up in school too.

    ReplyDelete
    Replies
    1. Thank you. It's really not fair that so many are missed and as you say, it can lead to other issues unnecessarily :(

      Delete
  2. Living with PDA as an adult is hard - and hard for my spouse. I struggle at home and at work. It does frustrate me that almost all of the autism resources are intended for adults to care for children, not adults to manage themselves. Do these children not grow up!?

    I mask very well, and people are typically very surprised to learn that I have autism, as I'm an outgoing extrovert - but that obviously comes at a cost.

    I've absolutely experienced the coke bottle effect as a foster parent, and the reality is that as you say - those children are not coping overall, so may need additional supports or less time in school. Advocating for children in your care is super hard work, but advocating for yourself seems to be so much harder.

    The level of gaslighting that occurs to parents of children with higher needs is incredible - We have had to fight for so many things for so many children that should just have happened. zzzzsssssssssssssssssss (that addition is from my son who is 3!)

    ReplyDelete
  3. Hi Matthew, obviously I'm a parent of a child with PDA but not a PDA adult myself,so I can only really cover my experiences here. But I know what you mean - and I totally recommend visiting the PDA Society website as they have several adults with PDA working with them and they can point you in the direction of resources for adults. Love your son's input by the way :)

    ReplyDelete

Comments are always very much appreciated and can really help the conversation go further...

{Linkwithin}

Related Posts Plugin for WordPress, Blogger...

Subscribe