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

(37 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??

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Message withdrawn at poster's request.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Message withdrawn at poster's request.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Message withdrawn at poster's request.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

DS1 so demand avoidant and unsure or unwilling to make mistakes that he can't read yet (Y2), or maybe it's partly processing problems too. He is starting to take an interest in writing though so I hope it all starts to come together soon. It seems so out of whack given his vocabulary but that's part of the nature of it all I guess.

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

Just want to say I know what you are going through, its just awful isn't it sad Hope you ok...

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.

Jacksterbear Mon 15-Apr-13 19:34:48

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.

HotheadPaisan Mon 15-Apr-13 18:54:37

Got it pop, sometimes he really doesn't like it if we verbalise/ empathise/ acknowledge the problem, ironically that often escalates things but the other things work, must remember them.

HotheadPaisan Mon 15-Apr-13 18:52:54

DS1 taught the class origami!

CurrerBell Mon 15-Apr-13 18:43:47

Hi popgoestheweezel, DS did have a difficult year in Reception, but since going into Year 1 and having the diagnosis, it does feel like things have really changed.

He doesn't have specific support as such, but he shares TA support with another child in his class who has ASD. I'll try to think of some of the things they've done to support him so far:

They have created visual timetables to help with transition times - although they've found that he works best with verbal signals rather than visual. He also has a specific reward chart with goals to work towards (e.g. sitting on the carpet for two minutes) and these have had some success.

They make sure he always has a 'fiddle toy' during group situations or when they need him to sit and listen. Having something to fiddle with (even a piece of blu-tac) really helps him to stay calm.

He has a specific quiet area to go if he needs to concentrate on his work or calm down. He doesn't have to attend assembly any more, and his class teacher uses this time to give him one-to-one support. They also let him come out of school first at home time, as lining up was really stressful for him.

More recently, they have downloaded information about PDA from the NAS website and from the PDA contact forum. There is a mind-map on the TES website which is a really useful teacher resource.

Mainly they give him lots of praise and encouragement - and they phrase things in a particular way, e.g. giving him choices, or challenges, rather than direct demands. Actually, it's this which has made the most difference. DS is no longer being told off all the time.

He does sometimes get downcast about school and says 'Everyone thinks I'm naughty' (although I've kind of managed to persuade him this isn't the case, by listing all his friends and teachers, who all think well of him!). He really loves science and maths, and so he enjoys the academic side of school. It's the social stuff he struggles with... he can be very dominant and basically wants to do things on his own terms.

He also loves being given roles of responsibility, e.g. being the 'special helper'. This week he's been teaching the class origami (his current obsession) and he absolutely loved being in the teacher role... his teacher said she just left him to it!

Anyway hope I haven't waffled on too long and this is helpful!

popgoestheweezel Mon 15-Apr-13 17:47:28

hothead, the deescalation techniques are most effective if you get in early, the minute you see the warning signs of increased anxiety.
We use distraction first then try to collaboratively problem solve (as in 'the explosive child' ross greene). The empathy step really helps ds calm down as he knows you know how he feels. The proactive problem solving when I know an issue is going to arise is working really well at the moment, e.g. 'ds, I know you're want to carry on playing on the ipad for ages and ages because you're really enjoying your game and you're having lots of fun. The only thing is that it's getting late and we don't want you to stay up too late else you'll be really grumpy tomorrow. Can we come up with a solution to this problem where we'll both be happy?' He usually suggests x amount of minutes and we agree if its anything like reasonable and set a timer.
Also, if he's just generally over excited some proprioceptive input really helps; hugging, firmly pulling or squeezing arms and legs etc.

popgoestheweezel Mon 15-Apr-13 17:37:38

currerbell, can you tell me a bit more about what school have done to support your ds? My ds (almost 7) hates school but apparently manages quite well while he's there despite some outbursts and self harm incidents, lots of issues in the playground (although that seems to have calmed down of late). We have a lot of problems with his school based anxiety and although there is anxiety associated with life outside of school its clear to us that school is by far his greatest source of anxiety. School accept that it is PDA and we hope to have a confirmed diagnosis by end of may.

CurrerBell Mon 15-Apr-13 15:15:45

Hi Searching, my DS is 6yo and he has just got an official PDA diagnosis (I was just about to start my own thread!).

The route we took was to contact DS's health visitor - he was nearly 5yo at the time - and she referred him to the school nurse in his Reception year. I said I thought he might have Aspergers (I had been suspecting this since 2yo) - although once I read about PDA that was a lightbulb moment that made me seek a diagnosis. I had to jump through a few hoops but we did end up with a paediatrician referral.

Once DS started school things started to become clearer. He was showing a lot of impulsive behaviour (e.g. he once he threw a brick in the playground...); he wouldn't listen and follow instructions, unless it was something he wanted to do or was interested in. He still finds it hard to sit still during carpet time and refuses to line up with the other children. He tends to dominate situations and things have to be phrased in a particular way in order for him to comply. He also has some sensory issues regarding noise (he tends to run around as a coping mechanism).

YET, he is confident generally and he really enjoys school (except assembly and group singing!) - he has good eye contact and good interaction with his friends most of the time. So, whilst this is a blessing, I think that made his problems harder to recognise.

Luckily, the paediatrician took us seriously. She didn't seem to know a lot about PDA at first, and we were first given a diagnosis of Aspergers. Even though it wasn't completely the correct diagnosis, it did help an awful lot to get the right support in place for DS. It meant that he could get extra one-to-one support, and also school called in the services of an educational psychologist. Following the psychologist's report, the paediatrician agreed to adjust the diagnosis - so DS now has a dual diagnosis of Aspergers and PDA (I suspect the Aspergers may end up getting dropped in later years).

My fear was that DS would end up being labelled as a 'naughty' child - but the diagnosis has completely changed things. School have been amazingly supportive. They have had to make a few small adjustments, but most of all it is their attitude to DS that has meant he has felt more secure, and he is doing well there. The SENCO has just booked to go on a training course on PDA - so I think it is being increasingly recognised now.

So I just wanted to reassure you that you are doing the right thing! I would try your health visitor or GP and insist on a paediatrician's referral. If you have no joy there, then there is the Elizabeth Newsom Centre in Nottingham, which specialises in (private) PDA diagnosis. Wishing you lots of luck and feel free to ask me any questions. flowers

Dinkysmummy Sun 14-Apr-13 23:46:08

I would definitely go to GP and start the ball rolling.

Yes , dinky starts the new school for an hour and a half tomorrow.
I think I was partly lucky with the senco at the first school, useless at using logic, but was lovely and was the only one who could actually calm dinky down (her teacher just made her worse).
Well, no hiding under the table isn't normal, but then it is how and why she does it. There is going under the table in a strop the cross armed, sulk face "don't look at me" under the table, then there is the "I need the toilet" go in the opposite direction hide out in year 1 part of the building and stay there for 45 minutes to get out of group reading, under the table!

Write down everything, get confirmation letters of behaviours from other professionals, take videos, sound clips, pictures of certain things (I have about 20 different lining up toys pictures, 15 different toy in mouth and a few spinning and rocking videos. Oh and a hand over ears one when I got out the Hoover, the hardest ones are the meltdown ones. As you can't hold a camera of have one around during the voilent outbursts.)

I do wish you the best of luck for your DS flowers

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