What has changed DS and what can I do about it? (suspect this might be long, probably best to grab a glass of something before reading....)

[medievalmadonna]

(Not in UK)
DS is 8, has a speech impairment which means he goes to a special language school. No learning difficulties though.
Last year (first year of school here), it quickly became obvious that something was up, as he could barely get any work done at all, despite not having actual problems with it iyswim. After discussions with school and dr, we had him assessed and he was diagnosed with inattentive ADHD and some sensory issues.

All agreed it would be good for him to repeat the first year, as he'd missed so much. And it was recommended that he get a 1:1.

So he's repeating the year (new class obviously), has settled in really well, great new teacher who was of the opinion that DS seems a bit distracted but nothing the occasional prod won't help. Teacher was unsure whether a 1:1 would be of any help as DS often finds it difficult to accept help.

Anyway, he's had 1:1 for 2 months now, for 2 mornings a week. It's not helping. Not only is it not helping, teacher says the even before she started, DS was going downhill.
On Wednesday we had a talk in which the teacher said things had got to a point where they didn't know what to do any more and had we considered medication.
This is what he said about DS:

• barely listens in lessons so then doesn't know what to do
• refuses to do work, often complains it's too much (when it's absolutely not)
• argues incessantly about why he should have to do any work
• talks back about anything he's told to do
• won't join in with group activities
• will hide eg under table or behind cupboard, when he doesn't want to engage
• discusses every rule or instruction given (even things he's had no problem with before)
• is ONLY interested in playing - to the point of obsession
• often in own fantasy world and not interested in engaging with real school events
• etc etc

He has friends in the class, and engages socially well. When he's not having an episode, he's friendly, polite and generally nice. He doesn't disturb the rest of the class at all. Very occasionally he will get on with some work and they are always surprised. Maths is just about ok, but he's really struggling with reading and writing. Teacher says none of the methods they've tried have had any impact whatsoever.

Now, I have noticed at home that he has been arguing more and discussing things before I can get him to do anything (we have homework every day and it HAS to be done). But once he starts I find that he concentrates fine (certainly a lot better than last year) and gets on with it ok. I also think he's been answering back more than usual, and I probably need to be stricter about that, but apart from that his behaviour is good. Things that he really struggled with last year (getting ready for school or bed, switching off tv when told, tidying up, etc etc) are all fine now.

To me it feels like this is more a behavioural issue rather than an ADHD one - or am I separating things which are actually one and the same?
And what can I do about it?
We have a follow-up appointment at the clinic in July, so I will discuss all this with them then, obviously. But I am very sceptical about starting medication for this without first making sure there isn't something else which has caused the change. Our paediatrician is very pro-meds so if I ask her I know she'll just want to prescribe something without looking at what might have set off such a deterioration in behaviour.

Thank you if you've managed to get through all that! I'd be really really grateful for any advice or ideas.

Some of your list certainly sounds like they could be due to ADHD.

What support is the school providing? Has DS been assessed by an ed psych and OT?

Have you tried a scribe, typing or speech to text software? Some DC find it easier to work when they don’t have to think about the physical act of writing.

Do you think DS meets any of the signs for PDA?

Thank you for reading and replying!
Re scribe etc : he's in the first year so still learning to read and write, he has to do this bit (different system to UK). Plus they take longer and teach in a slightly different way anyway because all the children have speech difficulties.

I don't know what an OT is, but he has been assessed at 3 different places: initial diagnosis and testing at an early years centre (I don't know what the equivalent is in the UK) by paediatric psych, then by the school he is at now (they offer an assessment and screening process for the speech/language bit), and then after he started there and the concentration problems because apparent we were referred to a child psych clinic which made the ADHD assessment. And of course our paediatrician has been part of the whole process too.

I'm off to Google PDA now!

So have had a bit of a read. While some of the PDA symptoms sound very familiar, he's not like this all the time, or even most of it. He is somewhat defiant as part of his character, but he will happily follow rules and instructions normally - it's just the last approx 3 months or so where things seem to have deteriorated so badly.

Hmm, parent to a PDAer here and as I read your post I was about to reply to say 'have you looked up PDA?' and then saw Thomas has already suggested looking it up :)

The behaviours you describe at school when there is an expectation to do certain things sound to me like they could map onto the PDA pyramid of avoidance strategies, eg debating, refusing, hiding etc. The link below has a graphic of the pyramid if you scroll down the page.

www.pdasociety.org.uk/what-is-pda-menu/what-is-demand-avoidance/

Also what stood out to me was the list you mentioned of things he found difficult at home last year but have now resolved - turning off TV, dressing, tidying up. All these seemingly mundane, everyday avoidances can become entrenched, and equally can miraculously seem to disappear overnight one day with no visible reason why. We have found though that often the rationale is whack-a-mole ... one area of avoidance releases and a couple of weeks later (or earlier) a new avoidance area emerges, according to environmental triggers such as change of staff/new expectation/increased anxiety.

It sounds like your school may be open to thinking about what could help. You could ask if they would be willing to read for example this book and put the approach into practice for a few weeks to see if it seems to help. When switching to PDA strategies, sometimes you can see some quick visible shifts and easings, and other changes can take longer to be seen. This is because a PDAer's accumulated anxiety levels and expectations of demands being placed on them continuously are high, and it takes time for the nervous system to adjust and trust that the new lower-demand approach is trustworthy and they can relax a bit.

www.amazon.co.uk/Teachers-Introduction-Pathological-Demand-Avoidance/dp/1787754871

Excellent post by Clock.

OT is occupational therapy. DS would benefit from an assessment, including a full sensory integration assessment. If you have educational psychologists where you are that would help too.

I really appreciate both your responses, thank you!

Sorry, of course I do know what OT is, brain is just not switched on today! He has been assessed by an OT and has weekly sessions. She has been working on sensory issues and the frustration levels with him.

His full-on assessment at the clinic diagnosed him with inattentive ADHD with some sensory issues, in addition to his speech & language problem (not diagnosed by them).

The improvements to last year have come about due to 2 things imo:

• he is a year older and understands the routines of school etc better
• we have worked on finding ways that work for all of us, rather than just expecting him to figure it out

It always takes him a while to accept and get used to a new rule or routine, but once in place he is generally fine about it. I went to see the education psych centre myself to get help on how to deal with the homework situation (it was a nightmare last year) and lots of the ideas that we came up with have really helped.

I will check that link and book, and I'm going to look up some PDA strategies too as I wonder if we have (inadvertently) been using some of them...

The thing is, that pyramid sounds very much like what he is doing at the moment, but not what he was like for the best part of the last year. Can you have PDA "episodes" or phases?

Many parents do naturally adapt to strategies that support their DC, so it wouldn’t surprise me if you have.

Demand avoidance can go through periods of being better or more challenging, often in line with other stress/demands on the person.

Can you have PDA "episodes" or phases?

What Thomas said - it can vary according to other factors - and there is often a "honeymoon" period to managing demands and expectations, and these can last some months. My DD, for example, was highly motivated to be successful at starting school. She spent months 'practising' going to school in roleplay, and I think it's possible she may have "taken on" the role of a school student in order to help her comply and cope when there. Also, novelty is a huge factor that helps PDAers.

I realise it may sound like I'm trying to persuade you your DS has PDA - I'm not meaning to! - and it's entirely possible that he's not PDA and that he will go on to be diagnosed with something else or nothing else ... I think I am trying to say don't discount the possibility of PDA without a bit of further reflection, as the strategies are different but they can be so beneficial.

I would honestly try medication. I'm 36 and diagnosed recently I really struggled at school despite being clever, my self esteem was through the floor I didn't understand why I couldn't just do it or behave I so badly wanted to. I wasted my 20s isolating myself because I didn't fit anywhere and finally got a diagnosis and medication changed my life I wish I had gotten this help when I was younger I'd of been such a different person. Xx

It is also worth bearing in mind people can display demand avoidance even without having PDA.

This is all very helpful!

I'm not discounting medication as such, there's just been no need for it until now, and given his various areas of difficulty, I'd want to be very sure of what exactly we're trying medicate.

I think his language and processing difficulties caused him a lot of problems and even though his school is especially geared up for that, it's still a major hurdle for him. He finds it difficult to communicate what he wants to say sometimes and then gets very frustrated and blocks everything.

I've also been advised to rule out auditory processing disorder; we have an appointment for that but waiting times are ridiculous so it's not until November!!

Also read the post and immediately thought PDA.. best of luck

Just had another thought ... have you read The Explosive Child by Ross Green? He has an approach of Collaborative Problem Solving and it can be very helpful in looking at individual problem areas (lagging skills) and doesn't depend on a child having a diagnosis or being sure which profile they may fit - it just works from the problems/skills.

His website is called Lives in the Balance, free resources and video explanations on there.

To those with experience of such things - more likely to be PDA rather than ODD?
I ahven't read that @SimilarToAClockShape but thank you, will definitely look into it. You've reminded me that many years ago when DS1 was going through a particularly difficult stage, a good friend recommended Try And Make Me by Bill O'Hanlon and Ray Levy. I've no idea where my copy is, but I do remember many of the strategies in there being really useful.

Book preview

It is far more likely to be PDA than ODD in my experience. In the UK ODD is somewhat controversial.

Some find Yvonne Newbold’s resources helpful.

I haven't heard of Try And Make Me, I'll have a look for that, sounds good.

I don't honestly know anything about ODD, we already had autism identified within our family so we started straight from that.

Do you have any neurodivergence that is diagnosed/suspected in either side of your family?

I can't remember (Thomas may know) whether ODD used to be classified within the PDD-NOS umbrella, ie whether it also has genetic links to autism/adhd/dyspraxia etc as Autism and PDA-Autism do - or whether ODD falls outside the "family" and is predominantly environmental.

Possibly clutching at straws, but just trying to think whether PDA or ODD could be more likely depending on family genetics ...

Thank you. More reading! :D

I keep reading that "it is generally agreed PDA is part of the Autism Spectrum Conditions whereas ODD can occur on its own" - DS2 definitely isn't autistic.
But he doesn't fit all the ODD criteria either. He's not at all aggressive or vindictive to others, he gets on very well with most kids in fact.

Actually I suppose it doesn't actually really matter (?) if we find things which help us, and you've all given me lots to look at and consider.

Cross post!

DS2 definitely isn't autistic.

Are you sure about that? PDA can display very differently to typical presentations.

@SimilarToAClockShape I don’t think ODD was under PDD-NOS. In the ICD-10 it was under “conduct disorders” but now in the ICD-11 it is under “Disruptive behaviour or dissocial disorders”. I don’t think there is a consensus on cause but many think is it is likely to be multifaceted including biological, psychological and social factors.

No known family ND with the exception of his AD(H)D diagnosis, and a niece with classic hyperactive ADHD. No autism.

Is ODD considered controversial because it may be more due to environmental factors?

It is often thought controversial because some believe it to have a high incidence of misdiagnosis, and the, at times significant, overlap with other diagnoses such as ADHD and autism. I think previously the DSM and ICD had quite different criteria for diagnosis too.