Possible Extreme Demand Avoidance

[Bitstuck1]

Hi, apologies this will be a long post and I haven't posted on a forum before so not quite sure what I'm doing.

My ds is 4.5 year old. He was born at 30 weeks, alot of pain and trauma, lumbar puncture at 3 day old, first held at 7 days old and for very short times thereafter, until he was around 6 weeks old and I could hold him for hours at a time.

He is a very happy, smiley, polite, kind, loving child, gets on well with other children of all ages, likes to play with other children and also quite happy to play on his own. Alot of people say he is a character and very funny. He went to nursery from 18 months for 3 days a week and has just left and started school.
I would say he is more of a leader than a follower, kids will end up where he is, get involved and then he will move on.

The issue is I always felt he was different from other children as he got older, the odd one out at every event.
Examples,
Sports day at school, all the mums talking, every child involved, Im chasing after my son through woods and all sorts, he just wasnt interested
Parties, he loves, but will end up finding his own area to play in or want to be outside.
Swimming lessons stopped working around a year ago, up to mischief, doing what he has been told not to do, making up his own games, just wants to play, i came here to float, not swim, will be extremely loud, sing or shout loudly if asked to do something or say get off me to the instructor, ive took him out for a year and will then try 1 on 1.
Nursery were taking children to the beach,, but couldnt take him as he couldnt be trusted. Sports lessons at nursery, 5 minutes he would do then off doing his own thing, so he then had to stay inside so already started to miss out. He says things are boring, he just wants to play.
Football lessons, karate lessons, acrobatic class, all other children involved, him just doing his own thing so had to leave them, I kept being told he was young still or just a boy but there were always younger children. He would be very loud, shout, be very defiant. (maybe wanting control, showed people not to mess with him etc)
At nursery he wouldnt sit on the mat, wouldnt tidy up, if he was pushed too far, he would scream, throw toys on the floor, very defiant again but not a daily occurence. I do think he has fight or flight issues, he doesnt like loud noises, chaos.
Now at school, the teacher pulled me aside, he took his socks and shoes off (they could at nursery) wouldnt sit on the mat or tidy as he was too tired, it was boring, so tipped chairs over, threw food, hit the teacher (although light hands, more of a point than to hurt) then was apologetic. Ok ish the next day but today is PE and he only excercises at home he said this morning and sit down assembly Friday. I think there may be more issues. He did tell them learning on a mat is stupid and they should just be playing, having fun. He will stand and scream for 20 seconds if hes really annoyed although less so now, maybe 4 seconds but will stare at you to show hes really annoyed and not happy about complying.

Always taught him road safety, never trusted him though, if we know the road is clear we will test him, tell him to stop, he just runs straight over 'as there were no cars'. He wont do a jigsaw more than once 'as hes already done it' . I have found him more exhausting than ever this past year, getting out the house to shop, or walk the dogs etc.

I think he will be okay as an adult, clever enough etc, but in the meantime I dont want him left out, left behind or treat different by kids as they grow older.
I have read other threads over the years but he just didnt fit other childrens issues completely. What was it that made him different in every situation.
So my thoughts are past pain, trauma issues, or his brain development on focus just isnt there yet, his personality or EDA PDA seems to fit. Although we have ruled out ADHD. Plan with the school is they will email me with issues, discuss with me and see how he is at the end of term as if hes the same he will be in a pickle! I do think Dyspraxia could be a problem too as hes pretty slow on his balance bike and cant do a small scooter. Waiting to see what the school says, his behaviour over the next 2 weeks and may refer him.

So sorry for the long post, just wanted to put it all out and not drip feed.
Anyone got any ideas, pointers? Its always been a nagging in my head, trying to work him out every few month or so. Ive started googling again because of school, but also just want to help and solve things for him.

Hes also extremely inquisitive, I went to a friends for an hour a few weeks ago as she has a 4 month old. For that hour, he picked everything up he could get his hands on, asked what it was and what it was for. It was very hard to chat with my friend, we talked to him at the start, she got him a drink and a snack, then he never stopped talking, always starting with Excuse me. He set off upstairs, wanted to go through her drawers, went back to the kitchen in the fridge, going through her cupboards looking for food. We were both exhausted at the end of the hour, I was in a right frazzle. I just can't get my head around how he goes so hyper in new areas. One taxi driver asked if he had autism as his son has it, i said not that I know of. He said it was just the way he was asking all the questions, pushing all the buttons and he had to put all the locks on so none of the buttons worked. Hes always the different one and stands out. The driver apologised after, but no harm done :-)
I am just perplexed and trying to make sense and pull all this information together for an answer I suppose, then I can help him.

How have you ruled out ADHD? Sounds a lot like my hyper ADHD child at that age. Your DC went to nursery and now school, can do a jigsaw, go to people's houses, interact with teachers and caregivers - that's not actually "extreme" really?

You can try strategies from the PDA society - the PANDA approach. See if those help. The books "The Explosive Child" and "10 Days to a Less Defiant Child" have lots of helpful tips and strategies.

PDA Panda – PDA Society

He may also/as well be extremely bright. My DD tests in the high average for IQ but my goodness she can get to the bottom of adult waffle/prevaricating alarmingly quickly. She also refuses to read most of the time but enjoys decoding Private Eye covers and Economics textbooks...

Whether it is ASD or not, DS needs more support. Has he been referred for assessment? Has he had an OT assessment? Does he have an EHCP? Has he ever had play therapy?

Play therapy's a good idea. DD benefitted from that.

We found a therapist using the Owl Centre online.

I did think about ADHD originally, but he can sit all afternoon, watching tv, looking at books, playing games, chilling, nothing hyper there. Nursery and his teacher said he didn't have it. I'm just going off all the bits and pieces, trying to make a clearer picture as I have no experience of any of this. He's only 5 days in at school so far. Your experience has opened up the ADHD box again for me.

The extreme part is when told to do something or hes hemmed in at someones house, a hall or room. He says he becomes angry and frustrated and then screams and the throwing of chairs etc that happened at school. That part can't continue and also the turning of peoples houses upside down :-) I can't have a conversation with anyone lol.
Thank you for the information, I will look at those, the PDA site i found was a closed down charity unfortunately.
I had thought he could be bored, as he was bright and that wasn't being covered what interests him, but hes not going to learn if he won't sit down and listen.
The 10 days to a less defiant child sounds great and quick turnaround too

He hasn't been referred as he has just started school and they are just noticing his behaviours, I haven't referred him myself as I didn't know if he was quite there needing a referral, parents always tell you there children are the same, as if you are being over zealous but I am noticing wider gaps as he and his friends get older and they can walk along a road without being clung onto, or do as they are told etc. OT Assessment, dont know what it is or who does it. EHCP i have read a little about the last few days. Never heard of Play Therapy.
I am hopeful that the school would come up with these things in the next few weeks, but its all bottle necking and I want to help him and be proactive, but then you can't rely on a school to always do what they should do.
Thanks so much for all these ideas, I will look into everything and see what i can do. I'm dreading picking him up at school, it may have all been fine but I don't thing joining in on a class of P.E. will go down well. He will be pratting around somewhere else, doing things he shouldn't and looking for an escape route. That is his usual in those scenarios.
I will discuss these ideas with the school also, once we have to have a meeting about it. Thank you all!

If we are ever at an event, xmas etc. and theres a disco, games for a prize, he will watch, work out where the prizes are, whats happening and then go and have a sneaky look at what there is, type of sweets etc. If there isn't anything in there that he wants, or is interested in, he definitely won't join in like all the other kids. There has to be something worth it at the end for him to bother in the first place. Unless he's playing at school, theres nothing else worth his time, no presents at the end, sweets etc. He won't just doing something because he has to, or his told to, no matter what authority that person has.

This all sounds very familiar. My daughter's more compliant than that at school (probably because girls are more socialised to do what others do when it's a group situation) but I have experienced all this at home! There are different types of ADHD though and hyper focus on something liked is a thing.

Please, do not rely on the school's expertise. I'm a teacher myself and had just one afternoon of training on SEN.

Teachers and nursery workers don't, can't and shouldn't be diagnosing things. They can comment on behaviours and what children are learning, of course.

You won't be able to change your son's personality in 10 days (!) although it is certainly an attention grabbing title.

Thanks, yes, i'm not relying on the school, they will be very busy and overstretched as it is. However, I did pick that school as they seemed to be very clued up on SEN and more flexible in their approach and things had been bugging me. I have just found out his teachers child has ADHD and ASD. So seems like he is in the best placement he could be atleast.

Nursery has let you down. You need to push for a referral to CAMHS. If it isn’t CAMHS who carry out ASD assessments in your area, DS needs a referral for that too. OT is occupational therapy. Not all ICBs undertake sensory OT, but if your area does, request a referral for that too. In some areas, you can self refer. Request an EHCNA yourself too. IPSEA has a model letter you can use.

Request a meeting with the SENCO.

I'd be thinking ASD OP, mainly due to the playing alone bit, quite possible to have dyspraxia too, DS does (and even ADHD on top of those). With PDA the demand avoidance is down to anxiety, do you think that's the case? It can look like stubbornness, defiance and anger though. It does sound more like he just doesn't see why he should have to do things that seem pointless to him though (DS is/was the same but not to the same level as your ds). Is he very bright and engaged when it comes to things he does what to learn about? That wouldn't surprise me at all. As he gets older I'd recommend really running with any interests he has.

For now push for all the observation/intervention/support school can offer. It will be really helpful to him and really helpful when you get an assessment.

Obviously can't diagnose but he sounds a lot like my DS4 with ASD (and I wouldn't be surprised if DS has ADHD too).

A lot of what you describe that can sound like defiance is actually not having the same social motivation as others, not intrinsically understanding social hierarchies, and not understanding that others might know more or other things to him. You also describe what could be: sensory issues, issues with social communication, issues with emotional understanding, and excessive rigidity (he crosses the road because no cars, because that's the rule - right?, and with your friend, it's ok to interrupt people if you say "excuse me"). I think you have enough here to seek assessment.

Endless Light, I have wrote all this down, thanks. Nursery would ring me when he was more trouble than usual, so to speak or ask when we went to pick him up, if there was anything going on at home, or how he had been sleeping or had slept the night before. As he would have been angry, shouting, hitting, there was never anything to say to them really. I think it may be because it wasn't an all time occurrence and they just said he was being him, very strong willed, which they were used to. He does also behave well aswell and if he was playing happily by himself, then they may have just not pushed him to do things, which would avoid the behaviour. The new manager of 6 months did tell me a few days before he left nursery that when she joined she did ask if he had additional needs and was told he didn't, so thats probably a bit telling..... no one mentioned anything to me so just presumed it was me being a bit too cautious

Beth216, I did think it was down to anxiety, but I'm not sure. When we went for a transition day at school, standing in reception, some children were shy, some coming out of their shells a little. My ds jumping around, choir singing as high pitched and loud as possible. Told everyone he shouts when he gets angry. I feel sometimes like the louder and bigger he is, the more powerful and strong he is, untouchable. Which is why I thought anxiety, but he definitely doesn't show fear or nervousness.

But not anxiety when he just doesn't want to do something, he did go on the carpet at school reluctantly yesterday but lay down to go to sleep instead of listening. Still on his terms.
He is my only child so don't have another child to compare with, but he asks alot of in depth questions, took a particular interest in the moon, planets and stars last year. He is definitely work smarter, not harder.

Busmumsholiday, yes, he is definitely always right and if he thinks I am wrong he will tell me and still be certain his answer, thought is the correct one. I think there are sensory issues and he does ask strangers alot of questions.

I have picked him up from school and the p.e. wasnt in the main hall today, just some exercises in the class. He didn't want to get involved at first but finally did with some coaxing, i think it helped not being in the main hall so went better than I worried it would. There was just one issue today and three yesterday, not sure on the severity of it as it is a quick handover, although Monday was a 20 minute chat about the extent of it. I suppose the teacher will be monitoring it over time.

I was thinking well maybe he is okay and everything will be okay, maybe i am worrying too much as this thread has gone from me querying things to severe action :-) Its been a shock. But I do know that it is too much, so I will do all the referrals etc suggested and if when they get back to me months down the line and he is all fine and settled in then no harm done ! Definitely better to be on the referrals list and in the queue. Thanks all.

Nursery did also say he was your typical boisterous boy, rough play etc so that threw me. I've been back and forth numerous times thinking there is a problem,, then there isn't.

I am just adding to this if anyone reads it in a similar circumstance to give an outcome.
A few days after this post ds was removed from class for some time out, I immediately came home and rang the doctors and said I needed help as my head was going round in circles. It was the best thing I did, they were great help and booked a phone call for the next day and a double appointment for ASD and ADHD check for a few weeks later. A weight was lifted off my shoulders as I had put it all in someone elses hands, instead of mine, when im not a professional. I wish I had made the phone call sooner.
I then contacted the Owl Centre, which were fantastic and then updated school.
DS has continued with behaviours and school have been great and have put lots of procedures in place for him and started the process for the EHCP. They are also doing a check for Dyspraxia over time.
We had our meeting with the Owl Centre a few weeks ago and have a diagnosis of ASD showing features of PDA and he needs to have an ADHD assessment when hes old enough. It seems pretty much certain he has ADHD. He also has a highly non-compliant personality.

Obviously this is the diagnosis in this case and they all vary, but if anyone is in a similar circumstance, just pick up the phone and ring the doctors, If i had done it sooner I would have saved myself alot of mental torture :-) and my gut did tell me there was something not right for a long time.
I know it won't be the same for everyone as services are short staffed but we have had great help from the school, doctors and local services and they have been very supportive which has relived some stress for us.

There will be a SEN hub used for my ds as he needs it when his class is learning things he doesn't enjoy and the rest of the time will be spent with his usual class for reading, play, story time etc. He will then go to a specialist school in year 2 or 3 once the EHCP is through.
I will be looking into Occupational Therapy, Gross and Fine Motor Skills Therapy and Sensory Integration next week when I get a chance as they are the things he scores low on.

And thanks to everyone above for pointing me in the right directions!

@Bitstuck1 thats really helpful thank you.i have a nearly 5 year old also with pda and also violent meltdowns at school- throwing stuff, hurting teachers. He says there are ‘too many rules’. He also furrows his own trail at parties, classes etc, really identify with all that. We have a GP appointment rush week and he has been referred by the school, who have confirmed he cannot stay but that they will keep him till he gets a new placement. Likely we will take him out to go into a. Nursery for a few more months while we get ducks in a row. Seems like it was quite quick for you to get answers?

I hope your doctors are as helpful as ours were, as it's potluck. I have to ring the doctor back when he is 5 as CYPS said he was too young at the moment.
It was very quick, although we had to lend money to pay for most of it, but still....even paying i didn't expect as quick a turnaround, I was very happy with the service. if he was learning and conforming i may have waited a bit, but he is avoiding all learning.

Where are you in the EHCP process? If the LA agrees to assess, an OT, including sensory OT, assessment can be part of the EHCNA. And if an EHCP is issued, ongoing therapy can be included in the EHCP.

We are ehcp being applied for in the summer. We are getting an ot assessment, booked ourselves, in January then going to do an 11 week course, his sensory, motor skills, visual spatial awareness etc are pretty bad so thought we'd get some help asap. Hopefully get him in as best a position as possible for year 1.

You don’t have to wait until the summer to request an EHCNA. You can do it now.

School are preparing evidence, and his teacher said it usually takes two terms before it would be considered. They have to wait that long. Should I just be applying myself now?

I did look into it and tried ringing a helpline, but could never get through, then I got caught up in everything else.

Evidence from 2+ terms of assess, plan, do, review is not required. This is a myth LAs and some schools like to perpetuate. They don’t need to wait that long. Personally, I would request an EHCNA yourself now. You can use the model letter on IPSEA’s website. They and SOSSEN have helplines but you have to persevere because they are busy.

Thanks for this, I sent an email the next day from the model letter and they have replied with the next forms to fill in. I guess we are now onto the long journey and process to get an EHCP :-)