does anyone have experience of ODD?

[rhetorician]

just wondering - my 5 yo DD seems to fit most of the criteria and we are finding it hard to manage her, although no issues have been raised at school. I keep thinking that she will grow out of the more difficult behaviours, but although we have better phases, no sign of it so far. Today was a good example - last day before school, 1:1 time with dd, movie, lunch out. Told her off for breaking a rule that she knows perfectly well - cue thrashing, crying, shouting, hitting meltdown, refusal to accept responsibility etc.

Experiences please?

[Hurr1cane]

Have you looked into PDA? It sounds a lot like that.

[rhetorician]

we're going to look for some help and advice on the behaviour, but hopefully this process will reveal whether there's a diagnosable problem or not

[Hurr1cane]

I was emailed loads of useful info on PDA for a member of my autism group, I'll see if I still have it

[Hurr1cane]

I do? If you pm me an email address I'll forward it

[WipsGlitter]

What's PDA?

[Hurr1cane]

Pathological demand avoidance

[Hurr1cane]

People with pathological demand avoidance syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum. Here, we explain the characteristics of PDA and what can be done to support someone who has the condition.

What is PDA?

PDA, first described by Elizabeth Newson during the 1980s as a pervasive developmental disorder distinct from autism, is increasingly becoming recognised as part of the autism spectrum. It is a lifelong disability and, as with autism and Asperger syndrome, people with PDA will require different amounts of support depending on how their condition affects them.
The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. Hence the name of the syndrome: pathological demand avoidance.

People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction. They often have highly developed social mimicry and role play, sometimes becoming different characters or personas.

[Hurr1cane]

The main features of PDA are:

obsessively resisting ordinary demands

appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)

excessive mood swings, often switching suddenly

comfortable (sometimes to an extreme extent) in role play and pretending

language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'

obsessive behaviour, often focused on people rather than things.

[rhetorician]

thanks Hurr1cane - some of those things definitely ring true, others not so much,but I guess that's fairly normal with these kinds of presentations - e.g. overlap, elements of other syndromes etc. At various points I've managed to convince myself of all sorts of things! really appreciate you making the effort to post that information

[Hurr1cane]

People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

[Hurr1cane]

That description is better I think, I was sent loads of information by our local PDA specialist so I could read up on it to support parents in my group. You are welcome to it if you need it

[lljkk]

What is a parent of a PDA child supposed to DO to manage them? What should OP do to have a better relationship with her child? Diagnosis is useless without knowing what it means in practice.

ps: my niece had/has ODD.

[Hurr1cane]

I'm not an expert on it, as my child has autism.

But I've sent the OP all the resources I have which will hopefully have ideas in there.

I think it's more posing demands differently, so they aren't obviously demands.

I've heard my friend, who's daughter has PDA say "there's a crisp packet on the floor! Oh no! Where does it go?"

Rather than "pick up the crisp packet DD"

[thelmachicken]

OP children with PDA often have sensory processing difficulties and are extremely sensitive to their immediate environment (which can be helped with adjustments/adaptations). Does your dd appear too sensitive to touch, sound, taste etc...or not sensitive enough?

Children with PDA struggle with the language associated with demands. Use indirect instructions (as above) and try not to give too much information at once - give info in chunks.

People with PDA can also respond very well to role play as a management strategy.

[Tambaboy]

Check " The Explosive Child" by Ross Green. I've heard it's a great approach for children with demand avoidance.

[rhetorician]

thanks - these are all useful and chime with things we've done that have helped - e.g. ask her to do things in a way that suggests that she is cooperating with you. thelmachicken I think she does have some sensory issues - she doesn't like loud noises (but has recently conquered her fear of hand driers!), is sensitive to smell, but needs to touch things a lot, loves water, goo, slime, tends to push too hard ("too rough, be gentle" is a constant refrain in our house), terribly messy eater (e.g. often not aware that she has food on her face, but again, is getting better). She CAN comply with demands/instructions etc. but it comes at a considerable cost - she is well behaved at school, for example, but clearly struggles to develop and maintain friendships. I should say that DP and I are just coming round to the idea that we are not coping with her behaviour, and that she needs us to identify and implement different strategies. I am feeling quite devastated at having let her down so badly, now that I think back to some of the things that we have said to her.

So I think we will get her assessed and try to identify the issue(s) - DP and I separately did several of those online tests for ADD and came out pretty much the same every time - but I am aware that these are a fairly blunt instrument and that we need a proper assessment.

She did well in school last year - scoring "capable and competent" in every area ("highly capable" in maths), and doing well on social stuff. But this is a red flag to me (from her report) "DD1 can be so calm and relaxed in school that it may sometimes interfere with the pace and quality of her work". She had a highly experienced and very good teacher, who clearly totally missed this. We are not in UK btw, and resources here are stretched, so I imagine we will be funding assessments out of our own pockets. But that is the least of my worries at this stage.