Meeting with autism co-ordinator next week to go over reports.

[DishwasherDogs]

Just had a phone call from the asd co-ordinator at the hospital. She wants me to go in next week to go over the reports from ds's assessment last month.

I don't know if there's anything I can do now that would make a difference.

I spoke briefly to ds's HT who was "pleased that I've made the connection that ds behaves differently when he's with me". Which I've translated to meaning she (and others) believe that this is a parenting issue, which dh and I know isn't true.

Is there anything I can do or say next week?

This is DS1 angry, btw. He's overturned a room full of furniture with this expression. Very shouty when he opens his mouth, though.

According to the reports he does meet the criteria according to the ADI (or DISCO - both are mentioned on the report so I'm not sure), but narrowly, which we expected, but the decision has been swayed because he shows no signs in school (sorry, repeating myself again!) and the enhanced mainstream services lady and parent support advisor have him down as manipulative and this is all learnt, I know this for sure because I had a long email (which sadly Gmail has eaten up and lost) telling us to treat him like a normal boy, that we were creating these problems by treating him like there's something wrong.
We've tried that, it doesn't work. If it did work, we wouldn't be in this state right now!

I asked about why we would be doing the same thing again, she said that some children are more sensitive and difficult and need far more input and more tries before we see results.
She said camhs may decide not to send us on the course again, but if they do we must do it, as otherwise we are not engaging.

I asked if he could be observed at the supermarket or the GP or dentist or anywhere really, they could have come to center Parcs with us for all I care, because they would see a very different boy, except all this behaviour is learnt apparently and doesn't indicate ASD at all (even though he met the criteria in the ADI and ADOS )
I didn't think it was possible to get more frustrated

Which school is it by the way? Dh works very near to a residential school beginning with B, but I think it's a secondary school.

I love that penguin :)
That's ds's default setting. Any other emotion is shown at 100%.

Thank you for chatting everyone, it's good to talk to people who aren't judging :)

Missed a bit - I asked if he could be observed in other places, but no, he can't.
But when they put sitting in a trolley biting his fingers as learnt behaviour in a NT child, we're stuck for options really aren't we, because in that case any behaviour can be seen as learnt, rather than mechanisms to get through life.

Yes, he's in ds's room. Ds is better about knowing loads about him, and where he was hatched, than looking after him, and he'd rather have a Galapagos giant tortoise :o

I sent an email to Margo yesterday and have had a reply from her saying that if he meets the criteria from history and ADOS and behaviour at home, he should have a diagnosis.
Slightly concerned that ADOS would take place at school and ds would manage to get through it ok, but hopefully she'd be experienced to spot this?

Ds and I had a long conversation about learnt behaviour last night. Surely any behaviour is learnt somehow
He goes in the trolley because it makes a supermarket trip easier. I haven't taught him that, I have never made a big deal of it, so he gets nothing from it apart from feeling less overwhelmed - so surely a good thing?
Ditto the noises he makes, he gets no attention from them (unless he's doing it aggressively aimed at ds3), but they help him get rid of stress. I don't go around making siren noises and howling, so where has he learnt it from? When he gets no attention from it, he's not getting anything out of it other than it making him feel better.

And yes, yes, yes to your analogy! I said he same thing to ds3's childminder when she had a knee operation. I never saw her limping, ever, she still managed to run and to cycle, yet the X-Ray showed damage and she had the operation. If they'd interviewed me beforehand would they have cancelled on the basis that I couldn't see anything? No they bloody wouldn't!

Erm, sorry, I'm being a bit ranty at the moment.

mostly, these days, I feel like grabbing most teachers etc that I meet by the throat and asking them who the fxxk they think they are.

they think they know better than Tony Atwood who write about masqueing and writes that its not right to parental blame, because ASD is in fact a neurological condition.

Its so draining fighting, isn't it. But these people just go home form their jobs. But its us that is left to clear up their mess.

I nearly didn't get a diagnois for ds, because of school's view. but I told doctors that I wasn't leaving without one.

I went on Monday so prepared, but having her tell me that it was quite possibly that it was all learned and he was a bit sensitive or a bit difficult (yes, but WHY is he more sensitive a difficult???) took the wind out of my sails and I sat there like a goldfish.

And yes, who the fuck do they think they are?
Smug, arrogant fuckers

Sorry, more questions:
Is it possible for a child to meet the criteria for ASD in the diagnostic interview and ADOS through learnt behaviour?
Surely this then makes a mockery of the system?

I've just spoken to someone on the NAS helpline, she is sending me details about how to make a complaint, details for an advocacy service, details to ask for a second opinion (the nearest specialist is.........Margo Sharp! :o)

I asked if it is possible for a child to mask as well as ds can - using all facial expressions, gestures etc, in one setting, and she says yes she has definitely heard of this.

When this is all over I will buy you all a drink and apologise massively for being the biggest pain in the arse ever!

That's the one Dishwasher. It starts at year 5.

Is it possible for a child to meet the criteria for ASD in the diagnostic interview and ADOS through learnt behaviour?

I think an adult would have to know enough about ASD to know the "correct" responses, so I doubt a child could learn behaviours consistent with ASD. If anything, some of the tasks involve having not learnt to do something age appropriate, so "learnt behaviour" really is a load of nonsense.

This is a really interesting piece of research, btw. Might be fun to try out to see what he does.
sfari.org/news-and-opinion/blog/2015/test-draws-on-doodles-to-spot-signs-of-autism

Thanks Ouryve - the school sounds brilliant and it had crossed my mind that ds would be happy there, and it would be handy with dh's work. Do you drive your ds there every day or does he board?

That's interesting what you say about learnt behaviour, I hadn't thought of it like that at all. I might include it in my letter to the asd team and gp.
I have an appointment with a lovely gp in 2 weeks to discuss asking for a 2nd opinion so I have 2 weeks to write a letter.
I don't know whether to complain or not. For the moment I'll leave that and see what happens next.

He gets a taxi provided by the LA. It's usually 50 mins to an hour each way.

I think a second opinion is a must. I think the only reason a diagnosis was refused was money saving to be honest.

In the letter asking for a 2nd opinion is it ok to name where we want a referral to?

Ouryve, does it make a difference to your ds being at a specialist school? (Maybe a very silly question, but I know very little about this!)

My own feelings about school for ds is that he's working so hard to fit in that his work is suffering and we're suffering at home, however everyone keeps pointing out to me how good it is that he can hold everything in as it bodes well for the future.
My gut feeling is that he'd be happier if he could be himself, but I'm aware that others think it's best to fit in with everyone.

It makes a lot of difference. He really struggled in MS to the point that it was affecting his mental health and he reached a point where he couldn't go into his classroom, so spent his day s in the corridor or a small room with his 1:1. He actually enjoys school, now and we've only had one incident of school refusal over 2 terms and that was triggered by some drama with his brother.

Even though the MS school had tried very hard with him and other kids were very fond of him, he says he felt like no one really knew him.

That's really sad. I'm pleased he's happier now.

Been thinking about learned behaviour a lot today.
Surely all behaviour is learned one way or another?

Ds does stuff we don't want him to do, so we use the 5 point scale and other things to teach him not to do it, but things like going in the trolley and making noises, he has learned himself and they have benefits of reducing stress or making an overwhelming situation easier. Learned behaviour isn't always about getting attention, positive or negative.

Surely the issue here is the underlying causes of him being more sensitive and more difficult, not necessarily the behaviour. Of course the behaviour is often a problem, but when we find the root of it we can avoid it or help ds to understand it or put things into place so he doesn't feel as overwhelmed by it.

So the learnt behaviour thing is a red herring here, not only because we are already doing things to combat the difficult behaviour, but if this is ASD, it explains why it takes different methods and a long time to modify things.

Sorry, that's really garbled and probably doesn't make any sense at all, but it's been mulling round all day!

Yes, that's it (and you managed to say it in two lines :o)

I saw a lovely friend this morning who used to work with troubled people (can't remember the official job title) and she felt it could be learnt and ds is enjoying having a reaction from us (which he doesn't get) or even a perceived reaction from strangers. I'm not qualified to know if that's true, but if that was the case, surely he wouldn't put so much effort into being "normal" at school .

I'm well aware that hitting and punching is a learned (learnt?) behaviour, as it is for all children who hit, but this is something we work on constantly, and we see results, so it's not like we're sitting around saying "oh woe is me, my son has ASD, we can't do anything" because we know we can do something, and we know we have to do something.

Before ds started to sit in the trolley, a shopping trip was tricky, even for the short trips he did. He would run, do spinny jumps, knee skids etc. it would take a lot of effort to keep him focused, even going in for one or two items, then he'd meltdown in the car after.
Going in the trolley has improved things so much (unless he sees a nun ), we can now do more shopping at a time, he will venture out to help occasionally, but it's like the trolley becomes a safe place for him, so surely at this stage we are allowed to acknowledge that this is an improvement? Instead I feel so defensive over everything.