Wow how much I missed in my last post about our experiences of ODD and PDA!
The following article popped up on my news feed this morning:
www.autism.org.uk – What is PDA?
Cue doing what I do best and scoring Lou against the PDA ticklist from the PDA Society and printing off the relevant information for her Paediatrician, I think I’m in ‘fighting mummy’ mode and “What have I got to lose?!”
For children a score of 50 and over…
“Identifies individuals with an elevated risk of having a profile consistent with PDA.”
Lou scored 68!
I’ve found out so much more from the article from the National Autistic Society (NAS,)
I think it’s probably easier to bullet point what I’ve read in terms of our current situation with Lou:
● PDA is anxiety based on a need to be in control – feel secure when in control.
● Boys and girls can be equally effected, unlike Autism and Asperger’s Syndrome.
● PDA presents as controlling and dominating. Lou controls every situation, e.g up and down the stairs “I have to be first,” first to dress, first to finishing eating, will get distressed if I finish my lunch before her saying: “I wanted to be the winner.”
● In the PDA Society Booklet ‘Awareness Matters,’ it talks about children who “put on a performance, hiding all of their difficulties, for limited periods of time,” it does on to say that the people who spend most time with these children, ie parents, notice their problems more.
● I’ve been noticing so much lately about the way in which Lou talks to us as adults, I find it quite rude and bossy. Children with PDA are often seen as ‘mini adults,’ Lou has said to me frequent times, (especially when she’s angry,) that “Mummy you are the child and I’m the adult.” Only yesterday she demanded that I “get up and get some food, now!” When I explained that this isn’t how we should ask for something she counted from 1 to 10 several times then told me to “go onto time out – NOW!” Which is the counting for processing time that we offer as parents when asking her to do something.
● Lou will tell other children how to behave but often doesn’t apply the rules to herself. E.g “you need to hold your mummies hand when crossing the road,” but she doesn’t do it herself.
● Lou will often talk in an adult way, using adult manorisms, for example, she will tell other children off, especially Moo saying “look at my face, good listening now, or its ‘Time out!’
● Lou will often blame other children for her actions, for example she said “Billy did it” after she drew on her trousers with pen. (Name has been changed.)
● Lou will deny actions even if she’s caught red handed, for example, if a book has been ripped she’ll say “Moo did it” even if she’s been asleep upstairs or sat in a high chair nowhere near!
● Lou will show little shame or embarrassment if she throws a tantrum in public, she will not be bothered by people starting or commenting if she’s rolling around having a tantrum on a supermarket floor! It’s taken me a long time to cope with the stares and comments!
● In order to avoid a demand or request, Lou will answer politely: “No thank you,” and often says “I’ve got a sore back,” “my leg hurts.” Or “I’ve got a headache,” to avoid doing something.
● Eye contact – Lou generally uses eye contact especially if things are going her way, although she never uses eye contact when asking her to do something, often making it look like she hasn’t heard us. We have arranged for her to have a hearing test in July to rule out any hearing problems, but deep down I just know that she’s hearing us, but choosing not to listen.
● Links to SPD – another light bulb moment when I read that PDA has links to sensory difficulties in processing information in terms of light, sound, smell, taste and touch. This can also have an effect on Proprioception difficulties (bodily awareness) and vestibular awareness (balance.) I have had concerns about Lou’s spatial awareness and the amount of accidents she has and appears clumsy.
● Severe behavioural difficulties can be present, can have problems controlling temper, and many people can appear passive and compliant at school, but appear very anxious at home. This describes Lou perfectly!
So where do we go now?
I’m currently testing some strategies that involve:
“a less directive and more flexible approach,” http://www.autism.org.uk
Only this morning we have tried an approach where we offer choices if Lou cannot cope with being asked to “get dressed” we then said “we’re going to leave your clothes here, you can get dressed or we’ll get Moo sorted first.
‘First’ being the operative word, make Lou spring up and collect the clothes saying: “I’ll get dressed now!”
I had used a more wordy but subtle approach with Lou last week after she demanded we go to the park and was scrutinised for “letting her control me” and “not being tough enough with her,” making me think whatever I do I’ll be judged! This is why I’m constantly researching as knowledge = understanding (which I bang on about!) But I just wish everyone could understand!
I found that advice in getting a PDA can be found at:
At the Elizabeth Newson Centre (Autism East Midlands.)
I’m going to email for more information at
Thanks for reading 🙂