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?

You are right, they are wrong. Simples.

Signs at school must be seen or no diagnosis given

I suspect this policy is not only wrong but unlawful. Try running it by IPSEA's legal team maybe?

I really hate it that when there's an issue with a child, the first call is to blame the parents, subtly maybe, but there's definitely a blame there - learned behaviour, manipulation, power etc etc. Nothing like this process to stomp you down and make sure you know exactly where you stand!

Thank you for your kind words, as always they mean a lot

I think you're right about Margo. I'll see if I can arrange a telephone appointment to discuss next steps then present it to dh as a done deal. He'll be thrilled :o

The thing is, I know that there are plenty of ASD boxes that ds doesn't tick, but there are plenty that do, and with everything that we've been doing, and how he behaves all the time, I just can't believe this is learned behaviour, but no-one else can see it, and everything he does, it is all being seen as learned behaviour.

X-post with everyone!

Ouryve, yes, he goes very expressionless and still before school, then puts his "school face" on. When with the other dc, he mirrors what they do, acts the same as they do, chats like they do, looks like a normal, happy nine yr old. This mask comes off the second he gets in the car. However, although it's become very obvious to dh and I, it isn't obvious to others, because he just looks expressionless and zoned out, which he does a lot anyway.
I've written all this down, the psychologist observed the watching and mirroring, and observed a very literal joke falling flat ("I had a babysitter once, but my parents had to fire her because she sat on me"), but then said it would be far too sophisticated for a child with autism to mask his well.

Senvet - I suspect without a diagnosis I wouldn't get far at all with that!

Sorry senvet, that sounded rude and wasn't meant to be! Just meant it will be more battles with no-one else but us seeing the evidence.

Did the psychologist put that in their report, though? I think it would be helpful to you when it comes to dispelling any erroneous ideas that he doesn't show any signs in school, therefore can't possibly have ASD.

Waa! Just written a really long post and my internet went off and wiped it!

Basically, no nothing like that is on the report, just glowing paragraphs of a normal 9 yr old boy.

Most of the report though, shows a big difference between school obs and ds's ADOS assessment, (things like eye contact, facial expressions, social interaction, gestures, imagination) At school everything is fine, during ADOS limited, but the majority then conclude that he does not have a problem in this area even though the ADI and ADOS show issues. I'm happy to post some of this if anyone want to scrutinise and pick it apart.

There are areas which don't affect ds as much. He has limited interests but can chat about other things if he wants, sometimes these interests are stronger than others, but I can't say that he has all encompassing obsessions.
He does flap sometimes at home and at the supermarket, and tap things, hit things with his palm, hit his head etc, but generally not in public. At home he is mostly expressionless and still. He doesn't really have strong rituals, a few things that surface when times are tougher, but not all the time.

Anxiety is a big problem for ds, and something I talked about a lot, but it's barely mentioned in the report.

Re-reading the report is making me feisty again, and makes me think it's glaringly obvious that the other's opinion that ds is manipulative has been the overriding opinion taken, as the main gist of today was about learned behaviour and managing that (and re-engaging with people I dont want to engage with :().

Been thinking about this all night. I'm wondering if the best course of action for the family is to withdraw now from the assessment, paeds etc. and go private in the next couple of years, seeing how everything is going.

We know that ds's behaviour isn't learned, and going down the parenting course route, family therapy and involvement with people who cannot see ds's issues at all is not helpful and adds to the stress.

Is there any reason why this would be the wrong thing to do?

Learned from where, though?

9 year olds are pretty self conscious and if he had "learnt" to flap in the supermarket, he'd be choosing not to, by now, and succeeding because it's not an innate reaction to sensory overload for him.

It's also pretty sophisticated for a child to "learn" not to have an appropriate range of facial expressions (DS1 does deadpan, giggly - whether appropriate or not - and, more recently red faced and tearful). That's one that, from your description, is truly pervasive.

I don't know where it's learnt from.
None of our other dc swear, hit, make noises to get rid of stress, so I don't know :(

Ds pulls out all the stops to be "normal" at school, yet in the supermarket he has to sit in the trolley furiously biting his fingers. Yet this is seen as learnt - but how? I don't understand.
We shop where it's likely that we bump into someone we know. What 9 yr old would choose to sit in the trolley loudly saying odd things if there isn't something going on?

Yet he is absolutely fine at school.
I go over and over and over this, and it seems so obvious to dh and me that there is something going on, but all the experts are sure that we are causing this because he's fine at school.

How can he do normal facial expressions at school though, yet not at home?

At home he is mostly expressionless or some extreme of emotion. He never looks a bit pissed off, when he's angry he looks like a cartoon bull about to attack, steam coming out of its nostrils.

School is predictable - and full of people who will rather unkindly remind him when he isn't blending in.

The supermarket is unpredictable and quite often full of sensory assaults that you don't notice until you think about them. Our local Tesceurgh Extra has an open ceiling, full of noisy air ducts, harsh lighting and about 40 beepy checkouts on top of the claustrophobic aisles. The closest DH and I have ever been to falling out is in that shop, so it's no wonder that DS1 spent the first 18 months of his life screeching non-stop whenever we went in there, developed a phobia of the gazebo that was installed when rebuilding half of it and has since had some of his biggest public meltdowns in there.

And yes - one of DS1's deadpan expressions does tend to be accompanied by inward seething and the occasional tirade.

dish no offence taken. Can you afford a private route?
I so want this nightmare to be over for you.

Senvet - yes, if we have the time to save.

The thing is, when we are allowed to poddle on, doing things that help (like the 5 point scale), we can manage ok, yes things can be hair raising at times, the other dc have their moments which can be difficult to deal with on top of everything else, but we manage.
While we're having to do things a certain way to rule out this that and the other, and follow different strategies, things are shit, my mental health suffers. But in order to stay on the paed's books, this is the route we have to follow, or we're seen to be not engaging with the support offered.

The main thing that we wanted out of this isn't support at home, or anything practical, but for ds to have some input to help him be happy with who he is, and some advice for when he's talking about suicide, or making awful threats against people. But it's not certain that we will ever get to that point down this route, and I may crack up/run away during the process.

I was talking to my friend/neighbour about this earlier, and she is one of the only people that ds doesn't mask for, so she sees him as we see him, expressionless and flat most of the time.

It sounds like he needs CAMHS involvement, to be honest.

And since he doesn't have a diagnosis of ASD, CAMHS can't claim not to be able to take him on because he has ASD.

This is how ds looks when angry (minus horns and fur).
Just shown it to ds3 who laughed his head off and said "It's X, look mummy, it really looks like X!"

We tried to get camhs involved, but they wouldn't because there was no diagnosis, and ds wasn't actively self harming or trying to kill himself.

We went through 7 months of family therapy (which we have been offered again) for ds1 (long story), but it was useless. They couldn't give us any advice, it had to come from us as a family. We were signed off as a success story, but nothing had changed, ds wouldn't engage with them so nothing could be done.

Sorry, they wouldn't because he was on the diagnosis pathway, which he still technically is.

He's struggling in maths, he says he gets really angry and his mind goes blank, which his teachers can't see, but think he's struggling - when he's calm and relaxed he can do his times tables and other things, but when angry can't do simple sums like 9+4.
He's ok at English, he's a very good reader and very good with words, but again, I don't think he's reaching his potential.
I think he's capable of more academically, if he could be helped to relax, but as no-one can see this, there's no option of support, and by the time he comes home he's in no fit state for us to start topping up his learning.

Re-grouping is a good way to put it

If we continue down this route, we tend to focus more on trying to do what we're told to do, rather than focusing on the family, which is what we should be doing, but that's probably my issue rather than theirs (the support people), plus I'm crap with people and find it all very intrusive (again, my issue).

Hermit crabs look interesting :o

Sheldon is still going strong. Ds watches him obsessively for signs of pyramiding, which can take years, so is slower than watching paint dry!
He is quite speedy for a tortoise and has lots of personality, which I never thought possible.

Kafka has nothing on this. I cannot begin to understand repeating something that has already been signed off as a "good use of tax payers' money".

I think the MP might help to stop the repeat of the parenting course and any other issues that are clearly bonkers like the policy about seeing issues at school which is not part of the diagnoses criteria, Two places maybe, but school as a predefined one - no.

Polter probably knows the diagnostic criteria.

I think it would be very fair, if, before pulling out, you asked straight out how they think that doing something again that didn't work the first time might help and what criteria is it ticking off.

And, if you manage to pull together the funds for some private evaluations, check before commissioning that they do provide a comprehensive written report. They should allow you to pick up on anything that they've mentioned to you but not included in the report (like the masking issue) so that it can be clarified in their final report.

(And, if the mask ever does well and truly slip, and more desperate interventions are required, I know a great little specialist school in easy travelling distance of you for boys just like ours )

Slow typist - I actually x-posted with senvet there :o