‘Not Met’ in phonics, reading & writing & self regulation / early years & ASD with PDA

[13MAPARTHELL]

completely expected, I am very proud of him nonetheless.

its near on impossible for me and dad to initiate any form of teachings within these categories as with PDA, its just refusal. He has very very low self esteem, currently hes obsessed with certain peers and daily, regularly and randomly will share how they are better in various ways at a multitude of things.

hes work books are reflective that he is unable to do any independent work academically and requires a teacher to assist in all the above, each time. Other than creative areas.

we are really concerned going into year 1, the impact this will have on him. He's report clearly states that he does well in child initiated independent play, but is unable to learn independently.

Its making me anxious, I just dont want him to struggle and feel even more self depricating in how he sees himself, he’s extremely sensitive, and mostly aggressive at times, he essentially picks up on small things that make him feel a certain way and is extremely perceptive, but he is 5 and so cannot fully understand himself or verbalise. The teachers are not able to do this of course, and im not there to see it, but I would know straight away.

Anyone in a similar boat?

How do you know that his teacher won't be able to see it? An experienced teacher will be very likely to.pick up on the problems in the 1st few days of term. Does he have an EHCP? Whether he does or not, make an appointment for a chat with his new teacher as soon as you can. I expect you will be reassured.

Because hes not being supported, understandable you they dont have the capacity to do so, we have had meetings where they share no concerns and they have alwaya been unable to make the connection between his learning and his autism. They fail to see that the emotional, social element stops his learning, any percieved loss of autonomy results in complete shut down. For example, these tests they do cant even show his capabilities, he wouldn’t share that necessarily. If he dosnt want to do it, he literally will not retain information

You say the school say they have no concerns, but they've judged him as emerging in these areas so they are definitely acknowledging through that that he needs support in these areas, and that should be in place going into Year 1 (if it's not already in place in Reception).

You say he has autism and PDA. Is the autism diagnosed, or is he on the pathway? I would find it very unusual for a school to not have support in place for a child with PDA. Again, has this been diagnosed by a profession (it's not always recognised as a condition within some local authorities) or are you saying you believe he has a PDA profile? Is an EHCP in place, or in the process of being applied for?

To be honest, these are conversations you need to be having with the school SENCO about how he'll be supported in Year 1 as, without knowing your child and exactly how he presents in the classroom, it's impossible to advise. My only experience of PDA (two different children) has been that the children have not been able to access the mainstream classroom as they're so resistant to the expectations and routines. I'm sorry I can't help more without further information.

The EYFS assessment is through observation, not "tests."

His needs are limiting his engagement and attainment, of course they are. But that doesn't mean changing the bar for him compared to other children. What do you mean by "they have always been unable to make the connection between his learning and his autism"? What kind of comments have they made>

The thing is OP, you're worried he's going to struggle but IMO he's already struggling. When he comes home and tells you how this person or that person is better than him he is already struggling. If he is shutting down frequently, unable to work independently then he's already struggling and if he picks up on little things he will be extremely aware that the other children are doing things independently and he can't - and he will be seeing that every single day.

I doubt the teacher really understands him - obviously she won't as well as you because she has a class full of 5 year olds - but unless she's done a lot of courses on ASD and PDA then she probably won't really understand what's going on at all. Primary SENCO's are not much better IMO. When teachers say they have no concerns what they often mean IME is that his behaviour is not so bad that they can't cope with it. It's not really about him, it's about them.

They know he has SEN so their expectations are lowered academically, his behaviour is manageable and so between those two things they have no concerns. That is just how the system works IME. He should have an EHCP - but the school don't sound like they're interested in doing one if they say he's fine - although not having that in place for Yr 1 where there will be much more working independently is madness IMO. You'd probably also struggle to get the LA to agree to him going to a more specialised school with his school saying he's just fine.

Your problem is OP, what's the alternative? Home schooling sounds like it wouldn't work. Private school with very small classes that specialise in ASD and understand PDA exist - but that is going to be a huge cost plus they're probably few and far between.

The sad thing is OP you're expected to watch him struggle and get to the point where he really can't cope before anyone will start to do anything. When he's a problem for them, then things might start happening - but they'll have to try all sorts of things themselves first, before it goes any further. And then the EHCP process can take 5 months - or longer if they can't find an Ed Psych or the SENCO doesn't do what's required. Everything happens very slowly and then someone will be hired to be his TA (I assume) but they will be poorly paid and may no very little about ASD or PDA.

Sorry to be so negative OP, but my experience with one going through school with ASD was not positive. No one is interested unless there are major behavioural issues IME

To me it sounds like what he needs is a very small class so he's not over whelmed but all that can happen in a mainstream school is hat he will either be in with all the other children or the TA will have him off somewhere else and he will be isolated.

I really think the first thing you need to speak to the teacher and the SENCO and ask how they are going to manage him in year one when he can't work independently. But has his school broken up? I guess it might be too late now unfortunately. Good luck! I really hope the school step up for him.

Forgive me for coming across as one of those ignorant teachers who doesn't understand PDA, but I'm genuinely interested in finding out more about PDA off the back of this thread and your response intrigues me.

I questioned whether the OP's child has a diagnosis, or whether they suspect a PDA profile as, in my own personal experience, children with PDA struggle to function in a mainstream classroom. I'm talking physical violence, 'trashing' classrooms, point blank refusal to do any work or conform to any classroom rule or routine such as sitting in the carpet with the rest of the class. I've had two children with PDA enter my Reception classroom over the years. Both required a reduced timetable and 1-1 support until places in specialised units became available. Neither finished Reception in mainstream.

However, I'm intrigued by OP saying the teachers don't have concerns and you suggesting teachers aren't concerned if there are no issues with behaviour. I was under the impression that PDA is directly linked to issues with behaviour as, by nature of the profile, children with PDA are highly resistant to being told what to do. I'm really unsure how a child can have PDA and not display behaviour which impacts on their ability to function in a mainstream classroom. OP talks about their children having academic and PSED struggles, which is totally understandable and expected if they have PDA, but then says the teachers aren't concerned which confused me. Now you're suggesting that a child can have PDA but it not be picked up in school because their behaviour is not impacted. This is totally different to what I personally believed PDA was, based on my limited experience. I totally understand that some people with autism can mask, but I didn't think PDA was something which could be masked.

Please excuse my ignorance, I'm genuinely interested to learn more.

I've just Googled PDA and this is what's on the Child Mind Institute website, which is the first article to come up:

What is pathological demand avoidance (PDA)?
Pathological demand avoidance (PDA) is a pattern of behavior in which kids go to extremes to ignore or avoid anything they perceive as a demand. It is seen most often in people diagnosed with autism.
Because of that, parents sometimes call it “PDA autism.” Identifying PDA can be a helpful way to understand some kinds of difficult behavior, but it is not a subtype of autism or a separate diagnosis.
People with PDA tend to have an adverse reaction to being told how to behave or what to do, even when it’s something that’s an ordinary part of their daily life — and even when it would benefit them. It’s called pathological when the avoidance is extreme and interferes with functioning at home or at school.

That fits with my understanding of what PDA is, but now I'm questioning my understanding of it after this thread.

Fully multi- disciplinary diagnosed, OT assessed, 4 psychologists, we also have been accepted recently for CAHMS and access early help.

@BoleynMemories13one very common feature of PDA is masking. So in a situation where the child feels unsafe, they pretend they're fine, which requires a huge amount of emotional effort, the stress of which only becomes apparent once they're in a situation where they feel safer (eg at home). This means that lots of PDA children do not display challenging behaviours at school - u til the overall stress levels become so high that they can't mask any more and everything falls apart (usually resulting in burnout and inability to access any organised type of education).

There are also different responses to stress - fight, flight, freeze, fawn, fool. The first two are more externalised presentations and will be observed by others, whereas freeze/fawn are more internalised presentations which are less obvious to others but are doing just as much emotional damage to the child.

OP, that sounds tough. Unless your son's teachers have done a huge amount of research, they won't really understand PDA and strategies to help PDA children are so counter-intuitive that they're hard to put into practice and often impossibility so in a school setting. Research from The PDA Society found that ~80% of PDA children are unable to access conventional education. I'd be mentally preparing yourself for the fact that you may get to the point where he can't cope at all with school. If there are things you can do to ease life before you get to that point, it could make a huge difference. My child has never been to school but we're 2 years into a fairly significant burnout caused by external life stresses, and I wish we'd done more to fend those off sooner.

Are you on any PDA support groups? Highly recommend the PDA Community on Facebook.

Look up internalised PDA.

thank you, no problem

hes diagnosed ASD & PDA profile, hes 50 page diagnosis includes 7 pages of PDA symptoms but states not officially diagnosed, but specifically recognised.

in his case, it is a very deep rooted, complex and extreme need for autonomy, not necessarily refusal but a need for control in all situations. He’s extremely violent at home, hence CAHMS Intervention and sees a child psychologist

at school, he tries but he internalises, but he tries which is amazing.

essentiAlly outside of school,everything is ‘his’ he believes hes an adult almost & others are not allowed things, as im typing this we are at a family fun day for work, theres a bouncy castle, hes spat and hit multiple people already because he wants to he in control and not have others there, we are leaving

I appreciate the replies (all, not just OP's I am quoting) explaining PDA a bit more and I'm glad people have taken my questions in the way they were intended, as I would hate to unintentionally cause offence.

As I said, my experience is limited to two children. I'm interested as I'm starting to question whether a lot more children who I have taught over the years have indeed had PDA, despite it not being recognised, as clearly it presents differently in different children.

I can only imagine how difficult it is OP.