masking/different behaviour at home

[NiceCupOfTeaAndASitDown]

Just interested to know how other people's DC 'present' when out and about/at school and how it differs from at home?

had our multidisciplinary assessment today and the pediatrician completely dismissed my concerns regarding sensory issues and seemed completely unconvinced that DS could be on the autistic spectrum because he appears to hold it together so well at nursery/in public but totally lets rip at home

she said that usually DC with ASDs are "fine in their home environment but struggle with things they find unfamiliar/stressful" - my point is I feel DS IS this way but only feels comfortable enough to 'let go' at home or specifically with me/DH...He's like a bomb waiting to explode whenever we return from anywhere and his behaviour is completely different.

I know I'm probably just feeling a little flat (my big fear was he'd act so NT whilst there that they'd think I was paranoid) but I feel like she already made her mind up he was 'fine' before we even walked through the door. ..she wouldn't even discuss my concerns about SPD as she said most children 'tick all the boxes of lists you find on the Internet' and have a 'dislike of loud noises' (I did try to tell her it's much more than that)

so it's looking like their report will just make it look like I'm a paranoid/crap mum although she is referring us to a specialised HV in the hope that she will somehow 'see what we see' (unless she becomes VERY familiar I can't imagine she will - he'll just wait until she leaves) - and I'm now worrying about the DLA etc we've just been awarded, if the professionals don't believe what we're telling them about him will it be affected? I'm so proud of my boy who worked so hard today to get everything right, but I feel like crying because it feels like nobody really believes what we go through each day to help him cope, the DLA being awarded felt like the first step in having recognition that he needs more support than the average 3.5 year old, but now I'm worried we've reached the end of the road with hope for diagnosis. ..should I start looking into going private or just wait do you think?

[Ineedmorepatience]

Sadly the children who learn to mask their difficulties are the ones who take ages to diagnose!!

The proffs like to think they know more about our children than we do and they certainly dont want to think that children dont follow their criteria for diagnosis!!

I would recommend that you do lots of reading and keep a diary of your Ds's difficulties, what causes them (if you know) and how you deal with them.

I also used a book by Tony Attwood to identify my Dd3's issues and then I wrote examples of her behaviours on post it notes and stuck them on the appropriate pages.

Be prepared to battle for your Ds, you are his best advocate.

Good luck

[sunshine175]

I ended up recording dd to get them to see (or hear) what I see. Dd had to collapse mentally before the doubting stopped. Really feel for you.

[Pootrouble]

Dd just turned 5. She is quiet and well behaved at school and tries her best to go undetected. At home shes like a tasmanian devil! School have picked up on certain things like the nees for her routine etc but thats all. We went private and got diagnosis of Generalised Anxiety Disorder in childhood with many Aspergers traits. We see the nhs pead in dec so will see what he has to say

[nonicknameseemsavailable]

I think you might have to go down the trying to record it route.

DD1 (6) had terrible outbursts after school for most of the autumn term in yr1 but was angelic and doing well at school. She was eventually referred for possible ASD which I didn't feel fitted and looks like it has been/is being ruled out but her meltdowns disappeared once a language disorder was diagnosed and I actually think she is dyspraxic (working on that). She can hide SO much and is so clever that she is doing exceptionally well so noone at school can see it but her coping mechanisms have really started to fail her in the last couple of months and I think we are heading for a crash followed I fear by an enormous drop in confidence as a result.

so I can't help at all but I can sympathise. If you can afford private then I would.

[NiceCupOfTeaAndASitDown]

Thank you all for your replies. I do feel it's going to be a long journey and that makes me sad because I can already see his confidence suffering and that's the very last thing I want to happen for him. I think I'm going to try and record him more, I've got lots of videos of meltdowns ( before he cottoned on and started running at the sight of my phone) but none of stuff like lining up toys, demand avoidance, sensory seeking etc - but even if I do what do I then do with it?

I'm really regretting not asking for an opinion from the OT (we didn't even get to see one) but any time I tried to talk about the sensory stuff I was just talked over or brushed off..she barely glanced at my notes (there were several pages I suppose it's too much)

we are on the list for a portage worker to visit - does anyone have any experience of this?

Also I'm considering applying for a statement for DS but we've not even started looking at schools yet (I hope to move areas and I naively hoped we'd have an idea of diagnosis to help us choose according to his addition needs) - any opinions on this?

[meglet]

It's hard isn't it. Despite me keeping a list of 5yo DD's behaviour the paed dismissed my concerns. She's very bright at school so they don't see a problem. It's me being a bad parent apparently.

I used to be perfect at primary school, well behaved and very bright.....and a nightmare at home. I finally got my ASD dx this year at the grand old age of 40. Mum was always told she was doing something wrong with me too .

[coppertop]

My experience of portage was great. They not only had some good strategies to help with different behaviours but they were also a really useful ally.

You may find that their notes on home visits will be a good source of evidence to take with you to future appointments. Even if your ds holds it together during visits, you'll be able to talk over the other behaviours with your portage worker and show them the videos you've made of meltdowns.

[Fav]

Ds2 is like this.
He presents as NT to most people, yet at home he's completely different.

We spend loads of time putting things into place for him to reduce stress, but find that family undermine it all and believe that Dh and I are being neurotic and somehow want there to be an issue, as opposed to us being crap parents.

He is like Jekyll and Hyde. At school, he appears fine, then like your ds comes home and explodes, or is so stressed he struggles to communicate at all.

We write diaries. I've been advised to print out the ASD triad of impairments and write notes around it showing ds's behaviour. We've also printed off the NICE autism guidelines for his age and have been writing comments on there.

We have found a private OT who we saw yesterday, (where ds had his happiest time for months, playing on all sorts of equipment!), she has given me 10 days worth of diaries to fill in, one for me, one for school, so hopefully there will now be proof that ds finds school more difficult than he lets on.

We are on a short waiting list for a private ASD assessment, which we still don't know whether to follow up or not.
NHS assessment should be taking place next year, but people seem so uninterested.

Keep posting here, it is a life's avert o have posters who go through similar, understand where you're coming from, and, most importantly perhaps, believe you.

[disorganisedmummy]

Hi all.My 8 year old ds is exactley like this. Fav it's interesting that you say you were told to print out triad and write nots.I have been wanting to do this but family members have accused me of looking things up and then fitting ds's "symptoms" onto it.I have no idea what to say to them.

We have major problems at home with ds's rigid playing.Ds2 who is 6 can only take so much playing pokemon (his current obsession).Ds1 cannot cope if ds2 changes the game and becomes very aggressive and violent.According to family members,this is normal and all kids do it.Is it?

We are waiting to be assessed for Aspergers and Dyspraxia but we have been told by Clinical Psycologist there's a very good chance it could be Aspergers.The problem is he masks so well that many people can't tell there's anything wrong.I get so tired of trying to explain to some people his difficulties and then this causes major issues between my husband and I.He fits nearly all the triad but doesn't present with repetitive behaviours but does have what I think are some restrictive behaviours.

Sorry,didn't mean to hijack,needed to rant

[Fav]

Disorganised, my family are the same, it's getting to the point where I feel quite isolated as they point out that everything he does is what normal dc do, and yes, I suppose they're right, but it's when you add it all up and see the amount of things that he struggles with, it makes us want answers so we can help him.

Ds has rigid behaviour when he's stressed, and he always needs to be in control, cannot play someone else's game at all. He masks it when he's with others, but then goes to pieces at home.

I think the thing to do is list as many things as you can think of, and write diaries so there is a full picture (that's what I'm trying to do anyway).

We've done too much today, trying to fit stuff in for my other dc, socialising for me too, so I don't go crazy! we got home half an hour ago and ds has been constantly barking (his latest noise) at ds3 and roaring. I know this is because I've done too much with him today.
But literally no-one else sees this. They see a happy little boy (I can see that he's masking it, but apparently I'm not keeping an open mind and I am somehow projecting this onto him and making him feel different). I rarely see him genuinely relaxed and happy.

[NiceCupOfTeaAndASitDown]

I'm on my phone so can't reply to each of you but I'm so grateful for your comments.

I suspect I'm also on the spectrum but have no idea how/whether to go about getting a diagnosis, my CBT therapist thinks I couldn't be further from it but I suspect a lot of HCPs only know a typical case and don't realise the spectrum is so varied

I have the exact same suspicions about family members thinking I'm neurotic as I manage/avoid so much to keep DS's stress to a minimum, he's always got overloaded very easily which has lead to meltdowns - I realise now even as a small baby he would get overstimulated by grandparents literally getting in his face and then cry for hours, it made me want to avoid them and raised my own anxiety levels until I realised how to 'manage' him (well I had more of an idea rather than being completely clueless and feeling helpless about the whole thing)

the trouble is I don't know where I go from here if their report says he's no issues at all...I guess it's just a waiting game

I did exactly what you describe and categorised his 'symptoms' by where they fit in the triad, not because I'm trying to diagnose him but because it makes sense! A lot of his behaviour I find hard even to explain - like when we went on holiday and he spent the whole first afternoon running around the house like a mad thing opening and closing every door repeatedly, switching lights on and off, grabbing every object that wasn't tied down or out of reach, humming and clucking and reciting train announcements completely unable to stop/calm down and I think is THIS 'normal'? how would parents of NT kids interpret this if they saw it?! would they think I was reading into things???

these boards have been so helpful on our journey so far, it's the only place I don't feel that everyone thinks it's all me! and please don't anyone feel they are hijacking by sharing, honestly the more I hear about other people's children doing similar things the more I feel I'm not going mad!

[disorganisedmummy]

Nice,I feel the same in that I can really tell people on here how I feel (going mad) and what's going on with ds.Ds is a tricky one wrt over whelmed.He will shout and rant and rave or sometimes just cry or hit himself repeatedly,but apparently that's all normal!I find it best to let him calm down in his room with his ipad or he will play his violin or something like that.

It's so hard because although ds doesn't particularly like change especially at school,he is not terrible.He is very,very reluctant to leave me which has been very evident over the summer hols when leaving him at holiday clubs.He struggles in places where there is no structure which was the case at his school summer club where they were left to get on with it,he hated it and had a massive meltdown.

Our biggest issue is the rigid play and this now causes problems with his cousin who is in the same class as him.My Niece and ds2 get on very well and ds1 is often left out which makes him jealous,violent and aggressive.The good thing is that he has learnt to recognise the feelings but still doesn't know what to do with them.I have no idea whether this is neuro-typical or not.

Fav,I have been told that I'm creating a self-fulfilling prophecy in ds by projecting my worries onto him.

We're lucky in that despite not having a dx he receives alot of support at school as it's an independent school.His EP report specifically stated that because ds is so articulate it can mask his social difficulties.

Thanks for reading my marathon post!!We must stick together!!

[Oblomov]

I have this. A lot of us do. Masking.
School will do nothing. Unless it causes them problems.
Sorry, but that really is the case.
I wish you every success.

[sazale]

Nice, your paed is wrong and it is very common for children with ASD to hold it all in at school. It's like a bottle of pop being shook up all day and then the lid being took off!

This might help
www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home.aspx

[NiceCupOfTeaAndASitDown]

funnily enough I've printed that link off! I doubt we'll see her again but my understanding was exactly that, that it's in fact very common..especially as she thought he was so bright, I figure he has already cottoned on to what's socially acceptable and is trying to fit in. I don't know where to start in terms of looking at schools..what on earth should I be looking for in terms of additional support?!