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ASD traits or 'learnt behaviour'.

(21 Posts)
zzzzzzzzzzzz Mon 02-May-16 09:30:03

I'm after a bit of advice. I'll try to explain as concisely as possible, but apologies if this post meanders!

My daughter is currently awaiting diagnosis for HF ASD. She is 7. She has always been sensitive to certain noises/ tastes; Very much a twirler; prone to meltdowns and significant problems with writing/handwriting at school.

About 8 months ago, she began to be very distressed if music, videos etc are played more than once in a row. It happened at home and school. We invested in some ear defenders which have been very useful, particularly in school.

Her father and I split up when she was a baby (well, he left me, but that's possibly semantics). He sees her once a fortnight for the weekend. He is a former SEN teacher, who worked a lot with children with ASD. He has always voiced his suspicions that DD has ASD.

This weekend, he witnessed a meltdown, where his 4yo wanted to watch a video twice back-to-back and DD became upset. He was quite cross about it, and subjected me to a lecture about how her discomfort is 'learnt behaviour' and we should not pander to it by turning things off.

I am not sure I agree, but I'm unsure enough to ask advice! My instinct tells me it's genuine discomfort, but I don't want to end up with a spoilt child. We are quite firm with her - I get the impression ex thinks she is allowed to act up at ours, but that is not the case.

I also work as a TA in dd's class, so I spend a LOT of time with her. While this means I am more aware of her triggers than most people; I am also aware this could blind me to potential bad behaviour.

I don't want to create a monster, but also, if she is genuinely experiencing discomfort, I don't want to make her life harder than it needs to be.

Apologies for the long, rambling post. Many thanks for any advice you are able to give. flowers

mummytime Mon 02-May-16 09:46:46

He sounds like an arse.

Nope it's not "learnt behaviour" and if that is the kind of stuff he spouts I hope he has nothing to do with my children.

Please continue to listen to her both her verbal and non-verbal communication.

PolterGoose Mon 02-May-16 10:25:08

Message withdrawn at poster's request.

zzzzz Mon 02-May-16 12:02:42

I agree it is the kind thing to allow her not to get in a tizz and to help her learn to cope when she is ready not when her father thinks she should be ready.

(and your user name freaks me out grin)

sh77 Mon 02-May-16 14:35:58

Have you had her assessed for auditory processing disorder as you mention issues with noise? Next time you see the Paed ask for a tertiary referral to GOSH as thy have an ASD clinic.
Sensory overload is all too real, as polter said. We had an almighty meltdown at an exhibition yesterday. It's never happened before and it left us pretty shaken. There is no way ds could have learned that.

zzzzzzzzzzzz Mon 02-May-16 15:51:21

Thanks for all your insights. It just reinforces what I believe to be honest.

We are trying to get her diagnosed via school. The Ed Psych has done a report and referred her for OT involvement with the sensory stuff. Should we approach our GP in tandem to this? DH and I were not sure as school is pursuing diagnosis via the LEA pathway.

She is very HF, I know there are friends of mine who (very kindly) feel that she is fine. But they don't live with her all the time and deal with the regular meltdowns; restricted diet; and complete inflexibility.

I'm struggling with where to turn to. And The Ex's attitude doesn't help tbh.

(zzzz- I just name changed to something random for this post! Sorry for freakage! grin)

mummytime Mon 02-May-16 16:07:43

I don't think you can get an ASD diagnosis via the school. It has to be via a Paediatrician or CAHMS depending on your area. Diagnosis should involve a multi disciplinary team (although they don't always see the child, didn't in my DD's case). Although the issues tend to need to be seen over more than one setting (home and school).

zzzzz Mon 02-May-16 16:39:01

You are just like me but morrrrrrre so grin

I too think diagnosis is a medical issue and schools input is more on a "providing information on social interaction at school/difficulties" and possibly supporting your initial referral. Did they tell you THEY were seeking diagnosis? shock

zzzzzzzzzzzz Mon 02-May-16 16:52:37

Well, that's what I thought was happening. We were told they would refer DD for diagnosis. The SENCO said that would take 18 months and the Ed Psych agreed that was the way forward. It may have been the CAHMS pathway they were talking about, all the acronyms!

DD's teacher is very well meaning, but inexperienced in this stuff. Our SENCO is 'borrowed' from another school and we only see her once a month. I haven't got a clue; and as I work with DD's teacher, realise the pressure she's under in all areas and don't want to push it too hard.

So, I suppose what I'm asking is: do we get a referral to the Paed via the GP? Is that a good way forward for us?! Drowning in acronyms and confusion!

Thanks!

SisterViktorine Mon 02-May-16 18:00:01

I would suggest you take your DD to your GP and request referral to either a paed or CAMHS, whichever is the diagnostic pathway in your area. This will almost certainly be quicker than a school referral into the pathway.

TBF to your DH it's not unreasonable that the younger child should be able to watch a video twice, it's a normal developmental phase where babies want and need to do this. However, as it's a well known trigger for your DD and he is a SEN teacher I would have thought he would know enough to be able to say to your DD 'I know you won't be able to watch it again so go to the kitchen (etc) for a drink (etc) while x watches it again'.

OneInEight Mon 02-May-16 18:02:06

Can I offer a different viewpoint.

ds2 at one stage became very upset when we said certain words. At first we decided the best course of action was just not to say the words . Unfortunately, as some of them were very common words like "Mummy" and "Daddy" there was no way we could control the rest of the world from saying them. After he ended up hitting an innocent stranger blush blush and more blush when he said one of the banned words we decided we had no choice but to sensitize him to them. So on days he was not showing undue stress we started using them again. It took several months but it now causes him no anxiety. I may be wrong but if it was purely sensory why does she not react on the first run through. I guess how you tackle it depends on whether you think it is a sensory issue or whether it is a self-imposed rule that things must not be repeated.

zzzzz Mon 02-May-16 18:29:52

I would say it's not so common a sensory issue as a rigid routine. It is true that you can break rituals by forced exposure but I wouldn't go down that road if I was only seeing Dc part time. Purposely causing someone stress to give someone else pleasure is something I would think long and hard about.

Phone the school (or pop in to the office) and ask who she has been referred to and for what. Then call them and ask where she is on their list and what that means timescalewise. It is easy to lose years at this stage.

mummytime Mon 02-May-16 18:31:01

I'd agree with the primary caregiver, trying to desensitise and introduce more flexibility when the child is relatively unstressed. But during contact with her other parent who she sees less often she is likely to be more stressed, and at best will be masking her stress which imho makes "explosions" more likely.

MrsBobDylan Mon 02-May-16 18:34:26

Your dd's reaction may not be sensory - my DS has obsessions which last for quite a time, then seem to morph into something related or entirely different.
For example, for a very long time he didn't like my hair when it wasn't tied back. He would become more and more distressed about it. That's because he felt that hair should be tied back. He also has 'rules' about how many times something can be played, doesn't like people singing together or singing along to music. All of those cause a meltdown.

My advice would be to go with it. No point in causing your DD distress and it will be very real and upsetting for her.

Your dh is wrong. Keep doing as you are.

PolterGoose Mon 02-May-16 18:36:05

Message withdrawn at poster's request.

SisterViktorine Mon 02-May-16 18:44:05

My advice would be to go with it. No point in causing your DD distress and it will be very real and upsetting for her.

This cannot always be the case though- for example I have a pupil who is very rigid about ppt presentations being shown in order with no back tracking. This can't always happen in the classroom. Eventually something you can 'go with' at home is likely to be unavoidable in some other context. I would say that it is better to build coping strategies for the need to be flexible about self-imposed rules and rituals. Easier said than done I know, but I think something to be aimed for.

zzzzz Mon 02-May-16 18:48:57

It is the nature of a disability that how ever much at some point it really inconveniences you or others, it's unlikely to be neatly solvable with just a bit more effort.

MeirAya Mon 02-May-16 18:57:10

Your ex is being silly. But, to be fair, it's probably very hard to combine being a parent & a professional.

I'd imagine being the non-resident parent (presumably one with a new and somewhat judgy pants partner too) might exacerbate the problem.

zzzzzzzzzzzz Mon 02-May-16 21:46:43

So much food for thought. All helpful. Thank you very much.

The routines that are rigid for some time and then change randomly rings so many bells for me MrsBobDylan - DD does this, definitely; and when she is obsessed, then that particular thing is so important and cannot be changed.

It's a hard tightrope to navigate. And I am trying not to judge Ex-P. He has his own stresses which are probably contributing, (And I am almost certain you hit the nail on the head MeirAya - the new judgy DW will not help matters!)

I will keep trudging on. And I will press school for further info zzzzz, thanks.

mummytime Mon 02-May-16 22:00:55

SisterViktorine- as those of us who are parents know that sometimes when "flexibility" is forced on a child, it can just lead to an explosion either in or outside school.
Telling parents to just "make their child more flexible" doesn't help. I tried for years to make my DD be less clingy, accepting that is just how she is (and it is one of her coping mechanisms) has made life better for everyone.
To be honest if a child can't cope with backtracking in PowerPoint presentations, I would try to not use them with that class and have that child do something with a TA when they were necessary.

SisterViktorine Tue 03-May-16 18:21:35

We will have to agree to disagree about that then mummytime.

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