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Behaviour - suspect PDA/autism - what the hell do I do now?

(45 Posts)
searching4serenity Sun 14-Apr-13 00:11:40

DS is almost 4, wonderful of course, but extremely challenging. We are beginning to suspect PDA/autism & feel totally lost.

I would like to get him properly assessed 1) to be able to get through the day and 2) to help him at school. We live in Herts.

Done a bit of reading on the Norcasa site - wifi connection v slow but anyway- & they want GP referral. DS appears totally normal ie just a bit naughty and I fear not being taken seriously by the GP. So he is very confident & has good eye contact etc but basically is almost completely uncooperative, won't eat / get dressed/ pee / leave the house / car & has sensory issues since he was born. He repeats lots of what I say; is quite obsessive about things being done his way etc etc. Recently his behaviour is spiralling and he is trashing his room / the bathroom etc. & I'm getting worried that he won't get on at school because kids don't like the fact that he can't share anything and they often hold back from him. We're just putting this all together and are feeling overwhelmed and scared for the future.

Can anyone suggest who I might see for assistance? We could afford to pay for it.

I am making my way through the PDA you tube vids which are v helpful but at the moment I just need to talk to someone to validate what's going on.

Please can anyone help??

adele1108 Sat 13-Jun-15 22:14:49

Oh OK thank you... Never thought of that lol xx

PolterGoose Sat 13-Jun-15 22:07:45

adele if you start your own thread you'll probably get more replies as people might open this one, see its old, and not read on smile

adele1108 Sat 13-Jun-15 21:37:39

He has since hit another teacher too x

adele1108 Sat 13-Jun-15 21:30:47

Sorry its taken me so long to get back on here. Paed asked us to come back in six months although the appointment was in Feb and review in Nov. She suggested that as he is too young to diagnose that I should just carry on doing what I'm doing. I don't understand the ABC idea? Its not something I have heard of before. We are under the help of a MAT (multi agency team) and our allocated worker visits 2\3 times weekly to catch up and review. We have a behavioural specialist involved alongside the inclusion team. We have regular meetings at school with everyone. We have had and been discharged from audiology although a new referral is going through as he has started complaining that loud noises hurt him. And covers his ears a lot. His eyes were tested as glasses have been fitted. Although the glasses are just one more thing that gets thrown at me (his favourite pair were thrown under a car in anger) they haven't mentioned in diagnostic pathway but he might be. You don't sound patronising at all. Thank you for coming back to me xx

Senvet he has an IEP at preschool which will go with him to primary school but he hasn't been statemented. What's Portage??? X

senvet Fri 05-Jun-15 23:47:58

adele have you asked for an EHCP or do you have one (or a statement) already?

If I was the primary school expecting him in Sept, I would be keen for all the help I could get....

And portage maybe?

MrsDeVere Fri 05-Jun-15 20:04:54

Hi.
What did the Paed suggest after telling you your son shows signs of ADHD?
Did s/he ask you to come back for a review, refer you on or discharge?

I would hope you were asked back for a review 6 months after your initial appointment. If this is the case make a list of all the behaviours that are worrying you. Write down any major incidents e.g. the hitting at nursery.
If you can face it try an ABC chart.
Antecedent, Behaviour, Consequence

What was happening before the behaviour: trying to get him ready for nursery
What the behaviour was: spitting, kicking, hiding, refusing to get dressed
What happened afterwards: any sanctions, punishments, rewards, if he fell asleep exhausted, did you give up and stay home etc.

The nursery should be familiar with this method and get on board if they are concerned

That can help you build up a picture of his behaviour, any patterns AND can help save time if the paed says 'have you tried .......'

The HV can only really offer standard behavioural advice but she can refer on if necessary. I don't know how it works in your area but if you have a Child Development Team he should be referred to them for assessment (it sounds like that has already happened if he has been seen by a paed)

ADHD, ASD, PDA, Hypermobilty are not mutually exclusive they can all go together as well as occurring independently

If he was referred for eye and ear tests by the paed as a result of his initial appointment it sounds like he might be on some kind of diagnostic pathway already.

I don't mean to sound patronising but are you sure he isn't? Drs are not always brilliant at explaining things.

adele1108 Fri 05-Jun-15 19:45:56

He is 5 in December btw

adele1108 Fri 05-Jun-15 19:44:28

This is my first post on here.
I just been flicking through all these comments and it is so reassuring to know I am not then on my own.
Today is a bad day.
Since about January of last year (just after my sons 3rd birthday) behaviours started becoming more obvious. Total defiance, refusal to do the simplest of tasks, 'his way or no way'. Speaking to me like im dirt constantly, Violence towards me ie hitting, kicking, punching, biting, pinching etc etc, Always been a fussy eater before everything else started. Spent three years fighting at bedtime. Can take anywhere from 30mins to 5\6 hours to get him to go to sleep. Today... Wow today he punched his teacher and another child at Pre school, this isn't his first violent outburst at school, he has previously on numerous occasions put his hands around throats (including mine).
Excessive energy which fails to burn off no matter how much I run him around. In September within week one of preschool (had spent two years in nursery prior) his key worker informed me that she had contacted HV regarding behaviour. Spiralling is an understatement. Unsettled and uncooperative at school when it comes to sitting for stories etc. Runs riot and is difficult to bring to calm. He is a happy, confident and very bright little boy. Loving and likes curd!es etc. Loves playing his way with lego or superheroes etc like any normal by. But his behaviour is so bad. On a good day he is amazing and love!y. On a bad day I don't know how he survives. I try talking to family and they're quite old school, as in he is 4, all 4yr old boys are like it. I am tired of patronising know alls so reading other people have the same and similar issues makes me feel a little better. We have a Paediatrician , have seen OT (Discharged after one visit and diagnosed as hyper mobile). Eyes tested and glasses fitted. Has been discharged from the ear testers (sorry I forget the name lol) although has again become sensitive to loud noises like shouting, clapping, high volume music etc. Paed said he is showing signs of ADHD but after reading about PDA that seems to fit his problems moreso. Sorry for the long post but it feels good to write it down.
Thank you and sorry for jumping on your thread xxx

PDAMUM Thu 18-Apr-13 01:04:22

Message withdrawn at poster's request.

PDAMUM Thu 18-Apr-13 01:01:08

Message withdrawn at poster's request.

popgoestheweezel Wed 17-Apr-13 23:58:12

Pdamum Your blog is brilliant! So much useful info on there and really interesting to read about your experiences too.

when did Phil Christie retire? we were with him at the ENC in Feb this year for a follow up, cheers.

PDAMUM Wed 17-Apr-13 19:20:33

Message withdrawn at poster's request.

CurrerBell Tue 16-Apr-13 10:20:56

Cupcakes, have you tried to get a paediatrician's referral? I am not an expert, but bad tantrums could be meltdowns related to stress/overload? My DS finds it hard to sit and eat dinner with us - he finds structured group activities very difficult (plus he finds it hard to sit still!). Your DD is still very young, but if you're worried she could have an ASD I would seek some help.

As I understand it, PDA is recognised as being on the autistic spectrum. My DS does have autistic traits such as spinning, zoning out, sensory issues, obsessive tendencies, and he also struggles with transition times. But he can adapt well to changes and doesn't need strict routines. I'm still not entirely sure whether he has Aspergers with demand avoidance issues, or full blown PDA, but using the techniques for treating PDA has certainly helped.

Cupcakespink Tue 16-Apr-13 00:13:41

i meant to say my dd who is 3

Cupcakespink Tue 16-Apr-13 00:12:19

Thanks for the reply Currerbell. My dd does is 3 is talking but not always sentences but she seems to understand most things I say but if I asked her what colour is something she couldnt tell me even though I know she knows.
She has bad tantrums, refuses to eat dinner with us, flys off the handle at the littlest of things like a butterfly on a cartoon or something. Starts throwing things over when she doesn't get her own way or the attention she wants. Thats a few examples of the way she goes on. I think she might have this, I really hope not but I think it could be.

CurrerBell Tue 16-Apr-13 00:06:55

PS I was just quoting there from the NAS website - what I meant to say was I don't think language delay is a major criterion for diagnosis?

CurrerBell Tue 16-Apr-13 00:01:41

Cupcakes, I believe language delay can be a part of PDA, but with a 'good degree of catch up'. My DS didn't have any really noticeable delay. Mainly I just remember him refusing to speak and saying 'No' to everything, as a toddler...! But nothing that was ever picked up on.

Cupcakespink Mon 15-Apr-13 23:22:30

Im really wondering does my child have this. Is language delay part of this would you say?

bjkmummy Mon 15-Apr-13 23:01:19

We feel that our younger son may have PDA - he is dx with asd at the moment but he has so many demand avoidance issues. I feel incredibly fortunate now though as he is due to start the norsaca school on weds so if he does display traits it will be picked up and assessed via his school placement.

Many years ago before his dx I asked he much the school/ Elizabeth newson centre would be for a dx and it was about £2k but probably a bit more now. Phil Christie has now retired but they do have someone else and think he still does consultancy work

popgoestheweezel Mon 15-Apr-13 22:54:20

Ds loved books before school but then refused to read in reception, eventually he just took off once he'd decided he wanted to do it and has surpassed his classmates now.

HotheadPaisan Mon 15-Apr-13 22:46:16

Message withdrawn at poster's request.

popgoestheweezel Mon 15-Apr-13 21:56:11

Hothead, I agree the empathising when meltdown is imminent is often provoking so its definitely a case of using careful judgement about how he might react in each particular incident.

Currerbell, you have been lucky to get a paed and an ed psych willing to discuss pda, when we have mentioned it (at every meeting for last two years) we are told 'i don'tt have any experience of that' and therefore nothing is done! Our ds has relatively few ASC behaviours though, it's very much PDA so maybe that doesn't help. We are now going to the Elizabeth news on centre.
At school, my ds also likes to be in role of teacher or have special responsibility. The other week he apparently 'took the lesson' for the teacher on Australia (one of his pet subjects) The teacher is trying to use all the pda strategies but its not had enough impact yet. He is in yr 2 and is an excellent reader and has always had an unquenchable thirst for knowledge but it seems school is just not delivering what he wants. Lately he has been talking more and more contemptuously about what they are learning. He was laughing at there being a round of applause for children when they identified verbs in sentences, and said that kind of thing is for kids about zero years old! They have been learning about the great fire of London which I thought would engage him as he loves that sort of stuff but he told me it was still boring cos he knows it all already, all they learn about is 'baby stuff'. I am beginning to wonder if this 'boredom' is having just as much impact as the PDA...

Searching, not sure what to suggest about him being wired at other's houses, my ds does it too and I haven't come up with a reliable strategy for it yet. I like to go round to people who have a trampoline!

greener2 Mon 15-Apr-13 20:24:10

Message withdrawn at poster's request.

Jacksterbear Mon 15-Apr-13 19:36:23

Hi searching and others on this thread! Just wanted to say hello and offer empathy as we are in a similar situation with my 6yo ds, about to see GP to ask for referral for assessment for poss asd/PDA/anxiety disorder. Also we are in the same county as you searching. My thread on this is here.

Anyway have no real wisdom to offer, unlike others, but thought I'd say hello and share the thoughts and experiences I've had so far. Ds' school have been awesome, as you'll see in my thread.

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