Guest post: Pathological demand avoidance syndrome - "my daughter is not naughty"

[MumsnetGuestPosts]

My daughter was a very happy and contented baby - she fed well, slept for hours and rarely cried. At the age of eighteen months, however, this all changed. She began to spit, bite and have extreme strops over minor issues like getting dressed and getting into her car seat or push chair. We put it down to the terrible twos, but as she got older the problem didn't go away.

When she started school we breathed a huge sigh of relief, believing this could be a pivotal moment in her development. We hoped that we would begin to see the end of her challenging behaviour - how wrong we were. Within a few months she was attacking staff and children alike, completely trashing the classroom, and her behaviour was becoming increasingly unmanageable.

It was like she needed to have complete control at all times over her environment and everyone in it. Without this, her behaviour would spiral, and she'd have meltdowns that could last for hours.

Despite the use of traditional behaviour management - rewards, consequences, praising good behaviour and duly ignoring bad behaviour - things continued to rapidly deteriorate. Mollie was excluded from school on many occasions, banned from taking part in school plays, placed on a part-time timetable and was unable to go on school trips without either myself or my husband to support her.

At only six years of age, she started completely refusing to go to school, after many months of arriving at school later and later due to the extreme panic that going provoked in her. It was eventually agreed by everyone involved that we should remove Mollie from school, and seek a more suitable and specialised placement. Mollie's precarious extremes of behaviour meant that life at home was hell on earth, and my own mental health and emotional wellbeing were crushed.

At around the same time, Mollie was diagnosed with Asperger's. However, I didn't feel that this quite fitted. The recommended strategies for a child with Asperger's did not bring us any positive changes in behaviour, either. Then, at the age of seven, she was diagnosed with pathological demand avoidance syndrome. As the name suggests, the overriding diagnostic feature for individuals with PDA is an anxiety-driven need to avoid the demands of everyday life to an obsessional level.

For the next few years I spent every day experiencing physical and verbal abuse from my daughter and walking on eggshells in order to try to avoid as many explosive outbursts as possible. The flexibility required by parents living with a child with PDA is astounding. During this time, my confidence was completely broken down - I was, for all intents and purposes, living in an abusive relationship with my daughter. Five years on, the emotional scars and long term effects of those years still affect me.

This emotional strain came from more than just my daughter - because PDA is a hidden disability, parents are often unfairly blamed and judged for their child's difficulties. There is a lack of awareness and acceptance among many professional circles, family, friends and the general public. Of course, this continual battle for acceptance - trying to get professionals across health, social services and education to take you seriously - is also a huge factor in the erosion of parents' mental health.

My daughter is not naughty and never was. However, she was severely misjudged and damaged by the wrong approaches from many in her early years, including myself. Looking back I feel truly awful for the way that I and others tried to change Mollie. I have had to let that guilt go, though, in the knowledge that we were simply doing our best, with no real understanding of what was driving her behaviour.

Using PDA strategies and providing Mollie with the correct environment did eventually begin to pay dividends. However this was a slow process - nothing happened overnight. Receiving a diagnosis was so very important for all of us, though, because it signposted us to the correct support.

Mollie and I now have a very close and loving relationship that is based on mutual respect, and we are also developing a friendship. This has only been possible by understanding PDA and by allowing her the freedom to grow and to learn within an environment that she feels is safe, comforting and strong. We no longer experience the meltdowns or violent outbursts, and our lives and hers are now worth living. This is why awareness and acceptance of this complex condition is so very, very important.

I often wonder how much earlier this could have been achieved if only we had received an earlier diagnosis, but I try not to dwell on the past. I can only hope that other children are saved from this by sharing my story, so that Mollie's experiences have a purpose and can be used for the greater good.

[iniac]

I was just looking at your book last night on Amazon! So much of what you say also applies to my son.

What do you see happening for Mollie in the future?

[BallsToThat]

Hi Jane.

Thanks for this article. My son has a diagnosis of Asperger's Syndrome but also has PDA written into his Statement (although no formal diagnosis) and his school use PDA strategies (as do we at home).

Understanding PDA hasnt been a magic wand. We still find his behaviour a challenge at times. But it has helped us frame it differently - as anxiety over demands, rather than 'being naughty' - and given us far better strategies to support him.

Can i ask a couple of questions:

Did you get Mollie's diagnosis via the Elizabeth Newson centre?

And what you do for Mollie's education? Are you home educating? Our son has a fabulously supportive primary school, but he is due to transfer to secondary in Sept 2016 and the schooling 'options' look bleak...

Many thanks.

[DishwasherDogs]

I found your blog a while ago whilst trying to find some answers for ds.
He fits PDA except he behaves perfectly at school.
Unfortunately my area won't even look at PDA though. Ds just meets the criteria for ASD but no diagnosis because he is fine at school.
Your blog answered many of my questions, so thank you for that.

[fairyelephantswellies]

Thank you. I am suddenly cold and shaking as I read, as I could have written this about my son. He has a diagnosis of PDA, and a full-time statement. He's 9 now, and doing really well at our local, tiny primary school. I worry about his transfer to secondary school and the anxiety, I worry about how we'll all cope and help him. He's truly amazing.

[InkleWinkle]

How strange, I was just googling this earlier.
I suspect my 10 year old is dyspraxic + something else but not sure what the something else is, Aspergers doesn't quite fit.
Anyway it's got the stage where we really really need help & I have an appt at school next week.
Problem is that all the outbursts are confined to home & it's going to be a slog to get anyone to take us seriously.

[springalong]

I promised I would pop along and say welcome to mumsnet. A wonderful home full of vicious vipers - yeah right! Thank you for being prepared to write about your (and your family's) experiences publicly. It really really does help to know we are not alone. I am very unlikely to ever get a diagnosis - DS seems to fail the autistic part so no one will look further at the anxieties. Certainly they all seem content to write off the violent outbursts at home to poor parenting until they see my stunningly good parenting in action! So I am settling for now to deal with DS's other learning difficulties. But will continue to keep up to date with the (very) limited research being done in this field.

[Ineedmorepatience]

Hi, I have a daughter with Asd who is very demand avoidant particularly when she is anxious generally.

I dont think she quite fits the PDA profile as Asd strategies work forus mostly.

I just wanted to say, thanks for sharing your story and well done for fighting through the system and getting your Dd's recognised

[Passmethecrisps]

This is a fascinating read. I have never come across PDA but have known children with oppositional defiance disorder. I wonder if they are similar? Does anyone know?

[Passmethecrisps]

That is interesting polter


I have known two children to be diagnosed with it. One I think I would agree that it seemed to be a handy "read between the lines" label. The other is very very different. I wonder if the issue is that on secondary schools for example often all we get is the label alone - we are left to do our own research and make of that what you will.

[Passmethecrisps]

And . . . I am sure I have seen PDA recently for the first time ever on the asn list.

Given this I will certainly look into strategies

[PDAMUM]

Hi Iniac, until recently I have never dared to even think about Mollie's future but things are improving so quickly that now I dare to dream. She is extremely creative and her art skills are out of this world. She is attending a group tomorrow for kids with emotional issues in order to try to re-establish peer contact and I am hopeful that she will make a few friends as she is now in much better control of her behaviour. I am becoming increasingly confident that she may be able to access a college course for art when the time comes. We also due fused glass art at home and are hoping to begin doing craft fairs which is another source of income that she may be able to utilise in the future x

[PDAMUM]

Hi Ballstothat, love the name ha ha. Moll was diagnosed at the ENC but we know home educate her as she is simply unable to attend school without it causing rocketing anxiety and behaviours and she is a persistent school refuser xx

[PDAMUM]

Hi Dishwasherdogs, many kids with PDA do not explode at school, infact bottling behaviours up is quite a common feature for many kids with PDA. Many areas still do not accept this condition and so it is simply a case of keep persisting and building on your case with PDA info and also documented information from yourself of how this profile does fit your child.

[PDAMUM]

So pleased that your son is doing well fairelephantfaires. Yes high school may be a difficult transition for him. All you can do is to try to make the school aware and helpful for him beforehand with awareness and a pda approach to education x

[PDAMUM]

Inklewinkle it is not uncommon for kids with pda to present at home only however this makes the task of recognition even more difficult for parents. There is plenty of info on the net about how these kids can present differently at school. All you can do is to educate yourself to the max and to then present your case and to never give up. Trust your gut instincts and fight all of the way.

[PDAMUM]

Springalong, many kids fall through the ASD net as their presentation can be atypical but all of the autistic like traits are there to be seen by the trained eye of an experienced clinician who is aware of the many faces of ASD. Good luck in your quest.

[PDAMUM]

Thank you for your comments indeedmorepatience. Yes many individuals on the spectrum can have avoidant behaviour but for kids with pda it is the avoidance of everything, including avoiding things that they like doing that is the key diagnostic feature x

[PDAMUM]

Hi passmethecrisps. PDA can appear similar on the surface to ODD but there are distinct and definable differences. Kids with PDA have autistic like traits consistent with ASD but in an atypical presentation. They also have traits consistent with ODD but in an atypical presentation. Therefore there is a behavioural overlap but kids with PDA have unique features that are not exhibited in either of the other groups. Kids with ODD do have difficulties with authority but tend to respond to rewards and traditional behaviour modification and they don't avoid all aspects of everyday life. Kids with PDA avoid everything regardless of personal consequence and traditional behaviour modification often makes them worse. This is explained on my information cards in more detail understandingpda.com/pda-information-cards/

[PDAMUM]

Yes Poltergoose you are bang on with your description between PDA V ODD, thank you x

[DishwasherDogs]

Sorry to ask you another question, but can you recommend where to look for an assessment that takes PDA into account?

[Passmethecrisps]

Absolutely fascinating. Just from your description i m already wondering if one of the young people i referenced would be better served by a PDA diagnosis than the ODD.

[cathyiel]

I recognised the description of emotional toll this takes on the parents, with tears in my eyes ... Things at home are so hard, for all of the family. Inklewinkle, we are in exactly the same situation with our eight-year old daughter - she's been referred for possible dyspraxia but we're still waiting (more than a year later), and no-one outside the family sees the extent of the problem as she is "perfect" (although often very anxious and withdrawn) at school. Luckily we are now getting some support from school and are getting some help from a private psychiatrist/mindfulness practitioner, and are hoping that this will help.

[thornrose]

I have a very demand avoidant ds, his primary diagnosis is Aspergers which is a good fit generally, but we use a lot of what have come to be seen as PDA strategies and have to be very creative.

That sounds about right for dd who is 15 and has Aspergers and dyspraxia. She is extremely demand avoidant even about things she really wants to do. I think I need to look up PDA strategies as I'm a bit lost right now.

[thornrose]

The role playing is very significant for us. Over the years we have been a variety of characters and asking dd to do something in character worked well (although I often find it uncomfortable and hate it!)

At the moment she is a kitten and I am a puppy if the puppy says the kitten needs a bath it goes down ok. (I cannot believe I am writing this!)