Desperate for a Diagnosis so People Will Be Nice

[YesAnastasia]

I am convinced my DS (4.4) has PDA (pathological Demand avoidance) amongst other things and at the moment I feel like no one believes me!

We are in the process of getting a diagnosis but it TAKES FOREVER!!!!!

It's as if he is just plain naughty or bad and he simply isn't. I'm not making excuses because I'm his mother because I know he is capable of doing naughty things. His behaviour at school/with others is making him unpopular and making school an unpleasant place for him.

His reception teacher is especially rude about him. She rolls her eyes, speaks to him in a horrible, exasperated voice that makes my hair stand on end. She makes offensive comments about him to me in front of him.

The children wind him up because he's very volatile and easy to provoke and I feel like if there was a diagnosis (or even a touch of sympathy) these children would be told what they are doing is wrong and my DS would be supported but I feel like it's all making his behaviour worse.

Yes I'm touchy and protective but aren't all Mums & shouldn't that be considered by the teacher in all cases especially those involving children with potential SEN?

Will all this change when he has a diagnosis? Is there anything I can do now without a diagnosis so he is supported as he should be?

It may change but it sounds to me like she is a shit teacher. I don't know how anyone can choose to teach reception children and then be unkind about such little ones. Do you feel this attitude towards your son is characteristic of the school as a whole or just this teacher?
I would be asking for a meeting to discuss ds' needs. Write yourself a list of what works for him and what doesn't and make it clear to the teacher that things need to change. Your ds doesn't need a diagnosis for them to put an IEP in place that would help them and him to make things better.

Can you get the teacher on board? Can you say 'I know DS's behaviour can be exasperating. We're trying to get it investigated. Could you keep a record of anything that he does which you feel is 'out of the ordinary' or 'naughty' and then I will have something to show the Paediatrician.'

I have found including the teacher in the diagnosis process helped as well as getting the school nurse on board. I let DD teacher know when I get another appointment through and explain what its for. Afterwards I have another chat about what happened at appointment, what the school needs to do and when the next one is likely to be.

I found keeping her updated like this and saying "the doctor was concerned about X behaviour and explained Y could be causing it" means its not all coming from me.

To be honest my first port of call would be to investigate other schools with places in your area & start visiting them with a view to a fresh start in the new year. Make sure you are completely honest about your son & his difficulties & see how they react. If you are to get any sort of dx you need school on board, without it you will STRUGGLE to get anywhere. Its still very early days for your boy so best to nip it in the bud & start afresh asap while he's young & the change will be easy. I waited until mid year 6 before moving my D & she was at the end of her first term in year 7 before she was dx. Good luck. :)

This teacher sounds awful. She sounds totally unprofessional and not all supportive. I agree that you need to get her and the school nurse on board asap.

I agree that this particular teacher is awful. That is no way to talk to, or about, any child.

How much do you know about the rest of the school? Do you know the Y1 teacher and do you think he'll get better treatment there? What's the headteacher like?

With or without a diagnosis, some staff and some schools will be better for your son than others. I think it might be time to look harder at this school and reassess whether you want your son to stay there.

We had a similar experience in Reception and I know how it feels… We finally got a diagnosis in Year 1. It did make a difference, but the main thing was that DS had a much more understanding teacher in Year 1 and the school also did a lot of work with the whole class to encourage tolerance and acceptance.

Your DS's teacher sounds awful. Like others had said I would kick up a big fuss and get the school head, SENCO and school nurse onboard too - and if they can't/won't support him look at other options. If your DS is going through assessment for SEN then school need to take than on-board and put some kind of support in place such as an IEP. A diagnosis won't make everything better but it will enable school to access further support - and it was crucial for me as I'd spend so many years not being believed!

Re PDA - we suspected it too at age 4/5 but went with an Asperger's diagnosis as it was easier to get… it enabled us to access support and we made sure school knew about his demand avoidance issues and how to treat him. The paediatrician finally agreed to add PDA to his diagnosis a few months afterwards. (However now he's getting older I think of him more as having Asperger's with demand avoidance!)

I would be wary of thinking the teachers attitude will change ds's nursery were equally awful after diagnosis as they were prior to it tbh

Well, I think it can depend, Ifcatshadthumbs. DD2 is no way near diagnosis, but just by showing the SENCO and class teacher a video clip of DD2 in distress, it has kick-started support for her.

Yes you're right Lougle it will depend on the school. I would be concerned about any teacher that makes offensive comments about a child to his parents regardless of their behaviour.

The school as a whole is lovely and so is the (female, young) head teacher. When I was upset about him one day, she wasn't even involved in the conversation but she whispered to me "please don't worry, we will support him" so it's just this one teacher at the moment.

His teacher says all the right things in discussion with me but it all feels false in that she doesn't act like she believes what she's saying. She hasn't changed the way she deals with him or encouraged the other children to understand him more. She just continues to call me in after school to tell me how disruptive he is, how he takes forever to get ready for things, then forgets what he's doing & hides or flips out, how he won't cooperate, makes strange noises and can't seem to control himself or his impulses. She's saying these things to me so I will try to 'deal' with this behaviour with him at home but it's much better at home because I accommodate him. EVERYONE thinks I'm being soft on him and he needs more discipline. It makes me crazy, more discipline is the last things he needs (like is happening at school) it makes everything worse for him. He needs understanding but he's still being dealt with the same way & I'm scared it's going to alienate him from the other children.

Phew, sorry. I don't have time to edit so I'm just typing. I get very stressed about it sometimes. I always feel like no one believes me & they think it's easier to get a diagnosis than to deal with his behaviour. Christ, it's not easy adapting your life and your natural behaviour to negotiate & use inventive ways to make him believe everything is his idea so we can get out of the house before noon!!! I'd much rather discipline and have it work but it doesn't.

I know that when I have a diagnosis, I can dig my heels in with the teacher & head. And if I have a problem with her behaviour or attitude towards him I can confidently go in there armed with information etc. At the moment, although he's being assessed by a paediatrician and school's child psychologist it's still my own research (and knowledge of my boy) that has lead to me thinking it's PDA (but I've never been more sure of anything).

Thanks for your replies ladies, I hope you're still here after that ramble...

EVERYONE thinks I'm being soft on him and he needs more discipline.

Oh gosh I've been there! A diagnosis won't make everything automatically better but it should enable you to feel in a much stronger position to fight for your son and tune out to the less helpful comments. It certainly made a huge difference to me.

She just continues to call me in after school to tell me how disruptive he is, how he takes forever to get ready for things, then forgets what he's doing & hides or flips out, how he won't cooperate, makes strange noises and can't seem to control himself or his impulses.

OK these behaviours need support and the teacher is right to bring them to your attention - however the way it is being done sounds really unhelpful. Unless there is a big incident they should not be telling you this stuff continually. Can you ask for a communication book so you're not being called in so much after school? Tell them how distressing it is being told all the negatives about your son's behaviour whilst he is being assessed for ASD. They can save it up for a proper meeting or write it down in the book.

Ask for an IEP with goals on how they are supporting him with these behaviours. If they are finding your DS as disruptive as they say, they should be think of ways to minimise this! Can you demonstrate how you are supporting him at home?

They need to be giving him very clear rules and boundaries, presented in a way he can understand. For example my DS is 7 and he still struggles to put away his stuff on arrival in the classroom. He needs consistent verbal reminders (done in a non-emotional way) and visual prompts to enable him to organise himself.

Are you seeking a PDA diagnosis or a more general ASD one? Your DS is very young and it may be that the behaviours become clearer over the next year or so. The important thing for us was that we knew that DS was 'somewhere' on the spectrum and had that recognised.

Your DS is very fortunate to have you behind him.

Thank you so much currer it's very nice to hear.

Can I ask you about your situation? What were the behaviours indicative of aspergers and/or PDA in your experience?

I don't care what diagnosis he gets as long as we are able to help him & make his life as calm & happy as possible. I would really like to learn better ways to communicate with him too. At the moment, he doesn't communicate about real life very often at all and when he does say something I think he can sense my eagerness and shuts down or says 'I was only kidding' and I've lost it again.

DS2 is nearly 2 years younger & we talk about everything, he remembers what we discussed earlier & refers to it. He can tell DH things about his day and it's lovely - I would love a way/technique to get him interested in talking to us in that way. He does talk btw (and has a large vocabulary) but in a very different way.

I'd never heard of an IEP before, I'll print off the autism.org page & take it in, it would be a good thing to have some structure instead of me just feeling up in the air all the time.

Just a quick other thing... did you ever worry that there was something actually wrong? Like an illness or something with the brain like a tumour & we're wasting time with this when it's a medical thing? I get a bit scared sometimes.

I sort of suspected something was 'wrong' when DS was aged 2 (just because he was SO stubborn and difficult, and liable to bolt at any opportunity!). Couldn't get him into his car seat etc, had to physically wrestle him in. He would say 'no' to everything and fight me all the way. However, nobody else every picked up on it, because he is bright and seemed to do stuff at the right stages etc. - and it wasn't until I had my DD that I realised she was a completely different child.

During Reception year we had all the behaviours you described - he was very hyper and disorganised. Lots of spinning and making silly noises repeatedly. He really struggled with transitions and also busy places, loud noises etc. The anxiety came out as him being extra hyper and he was liable to run off, or hide. He would throw sand or soil, and barge into other kids as he isn't aware of personal space.

At the time we thought it was PDA but like I said, the demand avoidance behaviour is calming down a lot now (thank goodness!). Now, he is much more eager to please but he doesn't always know what he's meant to be doing. So he has a lot more need for structure and routine now.

He's always clammed up when I've asked him about his day, but he will sometimes randomly tell me stuff later if I wait... so I've found not asking him directly is the best way! Being very calm and non-emotional works best for us. Also after you've asked him to do something, make sure you wait a lot longer than you think, as he may have heard but takes a while to respond. Any hint of impatience and DS will dig his heels in!

Is there a shared activity you can do with him (not necessarily about real life)? It sounds silly but DS and I share a love of Doctor Who and it's really helped us to bond and talk about stuff.

The hardest time for us was age 4/5, but in my experience it does get easier!

I know how scary it is going through the assessments and everything tends to play on your mind (re illness etc). Can you talk to the paediatrician about your fears - I'm sure he/she would be able to reassure you.

They do sound very similar. We've always known (since the moment he was born and had colic) that we need to deal with him in a different way than we expected and yes, when DS2 came along it was clear that everything was so easy with him. (so much so that I have to make sure he gets the same amount of attention because it feels like he needs so much less sometimes)

DS definitely has personal space issues, he'll put his face right up to other children's face to get their attention and gets rejected. I can see that this bothers him (by the way his little cheeks pink up & the way he swallows) but to everyone else he seems like he has the thickest skin ever. His behaviour will then start to become odd and impulsive and if it isn't nipped in the bud at that point (which it never is at school because obviously I'm not there and no one else can see it's a trigger) it gets out of control and maybe a bit scary to some of them.

I think he doesn't process emotions properly and the behaviours are because he feels a certain way and has no idea how to express himself or make things better (at school).

I LOVE Doctor Who but it's much too scary for him yet, he gets unnerved easily and has night terrors. I can't wait until he's ready for that & Harry Potter - he'll love them. We read The Hobbit (& LOTR) & he's in love with those especially the picture book from the films. We do a lot together though & we have a great relationship despite everything. I learned early on that the more information I give him the better, he remembers all the names of the dwarfs & creatures and the names of places in the fantasy worlds and I have no idea how he does it, I can never remember them :)

I'm glad things are better for you (and him) now. I can't wait for a phase when he's eager to please!!!! I hope that's coming soon. His behaviour has definitely got worse since starting school, I hope to God we get some guidance soon, I don't want the way he deals with things now to stick.

Thank you so much for taking the time to discuss this with me, I'm very grateful. I don't have anyone else in a similar situation to talk to (and who won't judge me or my wonderful boy).

Glad I was able to help!

I think you're right about the processing of emotions. DS gets embarrassed / overwhelmed by emotions and shows it by acting out - he also hates it if others are upset e.g. if his sister hurts herself. He also HATES singing - especially group singing (which I didn't know for ages)! But - he is getting better at expressing himself. He can't say 'I love you' but he can write it in a letter or card.

As I was writing the phrase 'eager to please' I was smiling, thinking I never thought I'd say that about DS! And it's certainly not true about everything (he still refuses to dress himself without help), but he can be motivated more easily, e.g. by setting him a challenge to complete a task, using a timer etc - and loves it when he receives praise or recognition.

It is harder for your DS at the age of 4, but older he gets, the better he will learn to express himself. Building a trusting and loving relationship is key, and it sounds like you already have a great understanding of what your DS needs and how to support him at home.

There may be local groups you can join which can put you in touch with other parents (your DS won't necessarily need a diagnosis), and keep talking on here too - I found it really helps!

I've been there from the child's point of view. When I was at school if you had a SN diagnosis then it was an unwritten rule that nobody would bully/make fun of you but if you were "quirky" or "slow" then you were fair game. I was desperate for a diagnosis and a proper reason why I couldn't catch, run properly or why I could only write at half speed. Worst of all at our school if you did your homework and behaved yourself you were considered "bright" and had to do the academic subjects like double science and history/geography for GCSE instead of drama and child development like I wanted to do (15 years later I'm only a little bit bitter now ). I ended up making up a diagnosis at school because I wanted one so much.

When I was 19 someone suggested that I fight for a diagnosis myself. I did and was diagnosed with Dyspraxia at 20. It changed my life and best of all I found out I was just as clever as my sisters. They both passed all their GCSE's (9 or 10 I think) and I got 3. With the extra help I got at uni I got a 2.1 degree, same as them.

You and your DS will get there in the end, keep fighting and it will all be worth it when he gets that elusive diagnosis.