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

[searching4serenity]

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??

Hi,

I wish I could help. I too believe my child has PDA/ASD. I took my daughter who had just turned 5 years old to the GP who was great and he brought up PDA, which I'm told is rare.
I took a list of my concerns along with written examples of her extreme behaviour from the school.

If he is at school or even play school/nursery, can you get them to write something regarding behaviours they feel separate him from his peers?

It is a very overwhelming time and I know how scary the future looks to a parent who suspects their child has PDA. I wish I could offer advice but really I'm only a couple of months further forward than you are.
I can't offer validation except you know your own child, and Dinky's school were always using the term 'challenging', and always with the same grimace.

Again I wish I could help, just know out are not alone....

Hi dinkysmummy - thanks so much for the reply, it makes a huge difference knowing that we're not alone... sorry that you're also going through this. Do you have any other children? So worried I can't sleep at the moment. I only figured out something was wrong the other evening - its all quite new and a bit shit. I'm also wondering about ODD, which is something I'd looked up a few years ago and it sounded too extreme. but it doesn't now it's a good description of him on an ordinary to bad day... :(

Your GP sounds v helpful... Great idea re nursery info - did you take that to the GP or is that info for the consultant?Dreading the waiting list..

I really want to go back to work at some point and I'm starting to realise that this might just be impossible. (looking at it negatively that is...)

Did your daughter find starting school really hard? Are the teachers helpful at all? Sorry for all the questions. Brain is exploding...

Discovering that your child potentially has special needs is a difficult and emotional time and you need to be very kind to yourself now, while you process it, and also going forward. Don't waste energy looking too far onto the future now as you need all your energy for the here and now.
Have a look at the info on pda contact forum, the blue millicent youtube videos and the understanding PDA book by Phil Christie et al. Get ffamiliar with the PDA appropriate handling strategies (being indirect, disguising demands, using humour, avoiding routine and repetition, be flexible, offer choices, view behaviour as communication, use deescalation techniques rather than sanctions to deal with outbursts) and start using them with your ds, if there is a positive response it supports the hypothesis that it is PDA. If those strategies do work then it's time to see your GP with a list of your concerns and a request for a referral to a paediatrician.

It's ok,
Ask away, but remember she hasn't got a dx, (although I'm pretty sure she has PDA). The school brought up an issue in January and put her on the special education needs register for behavioural and emotional problems at school action +. Then I mentioned it to one of the mums I was getting friendly with and after she invited us back to hers after school one day she asked if the school had mentioned autism. It was a big shock. I came on here and a nice MN mum pointed me in the direction of PDA. While it was a relief to find something that fitted dinky you are spot on. It is a bit shit.
I read about ODD but dinky does have some autistic traits and sensory issues which would lean more toward PDA if I'm not very much mistaken.

Dinky is an only child but we lived with a friend from when she was little and she had a baby when dinky was 18 months old. Up until 4 they lived like sisters (and as bubs got bigger they fought like siblings too!)
I think I was very lucky, the GP I went to see was a GP registrar so he was still in training. He said he had come across it while researching autism spectrum disorders.
I took all the information to the GP and will be sending it along with the form for the paediatrician. Dinky only got the referral on the 1st march and the questionnaires came through on Tuesday. When they have them back from myself and the school, they will decide if they will offer an appointment. So I shall be sending in as much evidence as possible to show that dinky needs to be assessed.

Starting school wasn't really an issue, I had spent the summer preparing her for it, we had count down to school and the library has a good selection of stories about stating school. I actually brought Splat the cat as dinky loved it (its about a cat who was scared to go to school but after one day changeshis mind).
so starting was ok to begin with, as it was all play and she ran in by herself and loved it. That did not last long though. She started getting into trouble and just before October half term found herself in the head teachers office twice in one day. Once for hiding under a table in year 1 and they couldn't find her, and the other for getting angry with another kid and hitting him over the head with a truck. . After half term they started phonics and it went pear shaped from there. She refused to let me leave and spent the phonics mornings hiding out in the toilets or in the tent outside in the story area. The teacher made it all a big joke "where is she?... Let me guess, toilets!". By Christmas she had been to see the head a number of times due to her hiding and agressivness and had hit the class teacher when she tried to guide her by placing her hand on her shoulder. From that point on the class teacher was a complete PITA! The poor deputy/senco was called everytime dinky refused to do anything.
By January she was on SA+ by February the head teacher said she would be better off at another school.
I think it may be easier if your DS is going through the assessment phase with school. I think if they understood her difficulties they may have approached things differently. She got pegged as a challenging and wilful child who had her own agenda with behavioural and emotional difficulties. The senco and dinky's fav ta were the only ones who got her and while they both still described her as challenging they also said she was charming, charismatic and a very cute girl. The senco actually seemed a little sad when I told her that I had found another placement for dinky.

Please remember this is only my experience, hopefully someone else will give you theirs. I would recommend checking out the PDA contact website and joining the forum. It's not as busy as here but there are some great tips and wonderful advice.

Thank you everyone for your very welcome comments & ideas. I'll respond to each one as I go along.

Dinky that must have been a shock to hear sthg like this from
a friend. Sounds like there's a lot of luck inv

Oops...

Involved in the education system regarding teaching staff ... In dreading this ... I can see it would. I can see its easy to label a child as disruptive & with their own agenda but unacceptable all the same. So I take it from your post that you moved schools then? I'll be joining the forum yes. So much to do.

Hiding under the table ... Oh so that's not normal? I always found it quite endearing :) Still not so good for learning I suppose.

Polter-I will do some video - good idea. I've already started to make notes. Didn't know there was help for sensory issues... Great. So you're suggesting we go via the GP. I could do with some formal help first I think... Maybe I'll look at Ms Keen. Although you guys are also great :)
I'm scared of getting the wrong diagnosis ... A ball of worry and fear at the moment. We've already started the techniques on DS and have had generally calmer few days which is brilliant!! The only thing I don't know how to handle was him being 'wired' at others' houses... ?? I took toys & snacks but he ran around like a loony.

The deescalation techniques are on blue millicents you tube channel I think hothead? How old is your son or daughter? Sounds very tough to handle, you must be exhausted.

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

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.

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.

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.

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!

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.

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.

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!

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.

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