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does your child hold it togther at school but not at home/out

(51 Posts)
OMGGG Sat 13-Jul-13 22:41:30

im interested to find out how many children dx with ASD are able to hold themselves together at school for whatever reason but then show different behaviours at home etc.
my child (hfa) is apparently showing no signs at school pointing to asd apart from a little help required with making friends and task changing. other than that school saying he is fine.
he doesnt melt down at school like at home.
how can this be?
paed says that autism expresses itself in all settings so if he is not displaying signs at school then he doesnt have autism.

BiddyPop Tue 16-Jul-13 12:50:27

DD has issues at school, but generally manages to hold it together reasonably there. But the days that are hard for her there, we know about without her saying it, as we feel the effects when she is "safe" at home and can let out all the stresses in meltdowns with us over the littlest things.

DD is also VERY quiet in new situations and with people she doesn't know (including the appointments with clinic and Drs). But can then open up into little miss Chatty or else lash out as little miss Demon once we are alone again (even if that's a quiet waiting room or the walk to the car, not even as long as getting home again). Which little miss appears depends on how stressed she has been (regular general anxiety about reasonably famliar but unliked trips to anyone medical, versus major stresses about completely new and unfamiliar places and trying to fit in with new people).

At least the school are on board, understand her reasonably well, and have really acknowledged how hard she has worked this year to keep herself under control and also to work on her social skills. (Not only were the reports from both class teacher and SEN really good to read, but the Principal's note at the end was just so positive on DD's efforts and acknowledging her difficulties, I was in tears, but good ones).

OMGGG Mon 15-Jul-13 17:39:17

thanks guys, i was a little unsure of the last paragraph as although i would love to say that i feel that as u say i need to keep her on side if we stay there. which we may well do. thank you.
im not going for a statement yet im going to see how year 3 goes but i will be hot on their case checking grades, and listening to ds.
i think as above i migjt get a private SALT to assess and possible ed psyc to go into school (private) more so so that i am sure im fully aware of how things are and whether ds is coping like they say he is.
good idea? bad idea? please give me your opinions - thank you

WilsonFrickett Mon 15-Jul-13 16:16:10

Not the last para. Essentially, hard though it is, you want these people on your side. Don't use the word refute - she doesn't have the power to refute it.

Instead I'd say something like:

I understand you have seem to have concerns refuted re ds's private diagnosis of ASD, made by a (insert qualifications, years of experience, current post previous nhs job)

Dr Autism-Expert made this diagnosis following a detailed history, careful examination and the use of structured clinical instruments, in accordance with the NICE guidelines. Dr Autism-Expert's comprehensive assessment was informed by Ms Psychology's school observations and test scores, which indicated possible ASD.

DS diagnosis is therefore not in doubt and I look forward to working with you and school next year to address his needs and help him continue to access his education. In the first instance I will be <insert what you want here, eg persuing the statement process>, which I look forward to discussing with you at the start of the new term.

Ineedmorepatience Mon 15-Jul-13 16:06:17

A SENCO should never be telling anyone that someone does or doesnt have Asd. I would send a letter but I wouldnt question her quals I would just remind her that the proff who diagnosedhim is an expert in his field and that you feel his diagnosis is not being taken seriously. That way you are not questioning her just being factual.

It is a horrid situation and sadly some people will always think they know better than other proffs.

OMGGG Mon 15-Jul-13 14:59:32

also i a m thinking of sending this letter to SENCO which another mumsnetter wrote out for me...do you think it may get her back up. its about SENCO telling Paeditrian that she feels ds does not have autism and private dx is wrong.

Dear SENCO

I understand you have refuted ds's private diagnosis of ASD, made by a (insert qualifications, years of experience, current post previous nhs job)

Dr Autism-Expert made this diagnosis following a detailed history, careful examination and the use of structured clinical instruments, in accordance with the NICE guidelines. Dr Autism-Expert's comprehensive assessment was informed by Ms Psychology's school observations and test scores, which indicated possible ASD.

I'd be grateful if you could clarify your relevant qualifications, and whether your assessments were also based on the published clinical guidelines.

Lots of love
Xxxx

kats3 Mon 15-Jul-13 14:59:25

Thank you for bumping Ineedmorepatience smile

I will have a read through after school run (or maybe when they are asleep tonight, so I can hear myself think!)

OMGGG Mon 15-Jul-13 14:51:20

i just wanted to get some more veiwpoints if thats is ok.
im thinking about arranging for a private specialist SALT. we have had access to nhs salt who has confirmed good results with regards to speech and language. poor inference language skills, non topic maintenance, turn taking and nuances poor but everything else was marked as 'normal'. senco said that the report shows nothing is wrong. SALT said that is not true and she has put some tecommendations in place for school and home. i must admiye the report was a lot better than i had expexted, which is good. what can a soecialist SALT do, can they uncover anything that may have been missed by the regular SLT. i have been told to get a specialist SLT on here and by IPSEA. i dont want to be seen as keep getting my ds assessed. he has already had the psychogists tests. for this reason i think i will leave our appointment with DK incase the nhs paed thinks im mental.
surely if the specialist SLT knows her stuff the high functioning autism will be noticeable in my ds, yes?
thank you

FriskyHenderson Mon 15-Jul-13 14:46:40

Yes.
And next year we have a (perfectly acceptable in many ways) teacher who taught him for a year already earlier in the school and didn't notice he had ASD (poo-poohed our concerns, called him immature). So that's going to be fun.

I try to get as much info as possible about what is on each day - PE is a trigger (because he's not athletic), PPA time day is another (because of the change) so on those days I get as early as possible to school to park as close (so I don't have to drag him so far back to the car) and I up the quality of the afterschool snack. So he comes out with a face on, storms up to me, I hand over a penguin (instead of an apple, e.g.) and that helps wink calm him until we are in the car or home.

Ineedmorepatience Mon 15-Jul-13 14:24:37

Bumped for kats

finallyasilverlining Mon 15-Jul-13 00:24:00

poo! strike out didn't work!

finallyasilverlining Mon 15-Jul-13 00:23:22

Not read the other replies but my Ds used to play up at school but be relaxed at home, now he has learned --through constant punishment--that he has too conform at school and then lets it out at home, sadly my Dd bares the brunt of it so I have to be on guard to defuse this. My Ds on the other hand cant win! If he has a meltdown at school = punishment, Shutting down from completing his work = punishment, mis-interpreting anything at school = punishment, not eating his food quick enough at dinner time = punishment and the list goes on. I try to make home as relaxing as possible. His mood when leaving school pretty much pans out the rest of the day, not ideal I know, but taking his cue does help somewhat.

OMGGG Sun 14-Jul-13 21:44:30

thank you for the good lucks too.

OMGGG Sun 14-Jul-13 21:38:32

thank you.
maybe there is hope that new year 3 teacher will be more helpful at current school.
current teacher has tried but she is not the desicion maker at the end of that day the senco is
the pysc who saw my ds said that ds had very poor pencil control and when i mentioned this to teacher she agreed immedialty but the senco shot her a look from hell. they darent own up to anything
i hope all of you have a great summer too. im sure ill be back on soon with my next worry xx

Holycowiloveyoureyes Sun 14-Jul-13 20:27:26

Good luck OMGG.

Ineedmorepatience Sun 14-Jul-13 20:25:17

You have a few options I suppose,

You could move him to another school.
You could enjoy the summer and see what his new teacher is like, he/she may have had more experience with Asd and may spot some triggers at school.
Or I cant think of an or at the moment but keep coming on here for more ideas.

Be kind to yourself and good luck smile

OMGGG Sun 14-Jul-13 20:16:58

thank you for all your replies. really helpful
i used dirk flower from flower associates for the gold standard autism assessments.

i really dont know what to do next &#128559;

Holycowiloveyoureyes Sun 14-Jul-13 20:09:38

Ineedmorepatience that's interesting what you say, I always try and ask about his day and he gets really cross. I never thought about it like that and will now leave it alone.
Also, I've noticed his behaviour is worse if we do play dates. He often melts down at them or after, making me feel like a crap mother.

Ineedmorepatience Sun 14-Jul-13 17:06:26

I meant to say that the art of holding it together at school does have implications. My Dd3 is exhausted most days when she comes out of school even now in a school which meets her needs much of the time.

She needs down time with no after school playdates, friends home for tea or after school clubs. I feed her the instant she comes out and then leave her to defrag for an hour or so. After this she is able to cope with something like Cubs or canoeing club.

Most days we dont discuss school at all and I certainly rarely instigate conversations about school.

This is how we cope now but before we realised what we needed to do she was extremely stressed and often melting down outside the school gates [or inside on occasions]. She even ran off a few times and I had to catch her before she ran across the road she was so desperate to get away from school.

Of course school only saw a "naughty"child playing her mother up but I knew as soon as she stood by the door of the classroom waiting to come out what kind of a day she had had!! I wouldnt want to ever go back to that and have even said I will HE if ever we go back to anything remotely similar sad

I think your son is trying to communicate to you that his needs are not being met but he doesnt have the words or the understanding of his emotions to be able to tell you.

Spiraling Sun 14-Jul-13 16:38:33

Hi OMGG, sorry my message is a bit confused. I made the referrals myself and got them to write to the school. So now the school are beginning to listen a bit more. Attila gives good advise. The school really do not see it, but they are also not looking.

Holycowiloveyoureyes Sun 14-Jul-13 15:49:54

My DS is fine at school. However his behaviour at home had become unbearable.
I spoke to his teacher and she seemed shocked I would even think he has ASD, yet all the signs lead that way.

We're waiting for an appointment with CAMHS and I'm terrified they're not going to believe me because school say he's fine.

OMGGG

First off your DS should be on School Action Plus and not school action because he has had outside agency involvement i.e a community paed.

GP should refer you to a developmental paediatrician but if you're already seeing DK I would keep that appointment and take her opinion over what you've had to date from the useless comm paed and SENCO you've had the misfortune to meet. Private DX that you've had as well is really worth something.

Re the statement, do apply for it yourself. You have a good case although your request may be rejected initially; this is par for the course.
The current school your DS is at is to be frank failing him bigtime. Certainly visit the other school again and see the SENCO there asap.

You are his best - and only - advocate here. Do not forget this.

Ineedmorepatience Sun 14-Jul-13 15:08:20

My Dd3 was diagnosed using DISCO after her old school refused to look beyond the end of their noses at what the real issues were, it was easier to blame me and label me as an over fussy Mum. As soon as we started the Disco we were pretty sure she was meeting the criteria as virtually every question we were asked we answered yes to.

School had done a questionairre but they had just gone down it and ticked all the boxes, the SALT assessment disagreed with most of what they said. Moving her to a school where the staff and senco had experienced Asd across the spectrum helped massively as they were able to back up what I was saying. Particularly with regard to the anxiety.

Dont give up and good lucksmile

KeepOnKeepingOn1 Sun 14-Jul-13 14:01:31

DK is a leading consultant neurodevelopmental paed. Disco may be a more suitable assessment than ados. Find an authorised salt. But apply for SA - you have enough but are talking to the wrong people. A statement will not be good enough ime but then you can appeal to tribunal. Unfortunately little may happen until the last possible moment (following tribunal decision).

PearlyWhites Sun 14-Jul-13 13:02:30

I think you can only get a nhs referral to gosh once you have had an nhs dx that you are unhappy with but I may be wrong. Who did the assessment for your ds private dx?

PearlyWhites Sun 14-Jul-13 13:00:03

op you could ask your pead to send the school an achenbach questionnaire this will show hopefully show up your ds problems in school.

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