Really stressful holiday

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DD1 has a genetic disorder and her meds for this have been out of whack, in fact she was also tested for precocious puberty recently so when her behaviour got tricky I thought that explained it. She also has severe language disorder and sensory issues and "challenging behaviour" (our latest non diagnosis!)

On holiday her behaviour was so bad that we are all very pleased to be home. I got a phone call wilst there saying she isnt in early puberty so its not that although her mood swings may be related to her meds a bit-the rest I think is frustration and the fact she hates change.

So we are back and this needs to change. I have tried time out. Immeditae consequences etc etc and its like she doesnt care. She visably relaxed when we got home so some of it is her need for routine but I think she may have autism tbh and I am wondering whether to ask to be assessed for it- should I ask for a PECAHMS referral? Recent paed visit was rubbish and am waiting for a call back from the consultant to discuss the inaccurate report the registrar sent after she saw us. And regardless of diagnosis should I try and get on an early bird course or similar for the behaviour? Its like a switch has just turned on and I feel like everyone else has known all along that she has autism!

Must be incredibly frustrating not having definite answers about what is causing the challenging behaviour. As you have strong suspicions about autism, would it be worth having a look at some books or websites for tips on appropriate behaviour strategies and just try them to see if they make any difference - if there is any positive impact it would also help as part of the evidence gathering for diagnosis.

link here to the NAS page on pathological demand avoidance which talks about motivation and different ways of tackling very challenging behaviours:

www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

That sounds tough!
I can't be much help as we are only just starting this process. We are still at the Health Visitor referring us to the paeds level. But I can tell that everything seems to be a battle.

It's such a shame that the Docs etc don't listen more to the parents who are with these children on a daily basis.
Good luck with your daughters diagnosis and I really hope you get the help and support that you both need.

thank you both. Funnily enough I spent the early hours of this morning on the NAS website (whilst breastfeeding dd2 who was up loads)lots of good stuff on there and tbh, mostly the stuff that works for dd1.

School have said many times that dd's behaviour worsens drastically when there is a change in routine and they have foud using visual timetables and with the routines, DD is much better, she struggles with transitions and with any change to the norm and with free unstructured time. So I think they have been hinting tbh along the same lines. I am wondering whether to ask the GP for a PECAHMS referral. Or wait and speak to the paed again. DD has been a million times better today and has spent the day with her track which is what she loves most and we went on a long walk where she was Thomas the tank and we directed her. Her play is always the same and its reenacting times I or someone else has played a game, she'll do the same thing.

OP I have seen it this said here before and I think it is good advice.
If you suspect your child may be on the spectrum, then implementing the strategies for a child on the spectrum is probably a good idea.

The other advice that I've seen it to keep a diary of your DD's behaviour so that you can show professionals the pattern of behaviour, to help diagnosis.

I would be talking to the GP about getting to CAMHS also..though they may try to stall pending what the Paedx says. I would push for it nonetheless

Thanks yes I rhink GP may be a good plan but will speak to the paed first. I think the consultant paed is calling me back and it was her reg who did the appointment and I think I have a strong case to have dd seen again sooner than the usual yearly appointment as the report is actually so innacurate it'd be hard to argue its validity iyswim so fingers crossed otherwise I know it will be yet more long waitin.

Every bit of advice or strategy professionals have given me has been actually the same used for children with ASDs so it could be that its already suspected (been told in the past wait and see and various medical issues have confused things)or it could be that the strategies for learning difficulties/SLI/GDD are the same as for ASD?

Waiting to see the clinical psychologist for dds condition about her angry behaviour, spoke to her a while back about dd's obsessions and routines and I asked her then does she have autism and she said dd doesnt present as classically autistic but then I have since realised this isnt the same as her saying no she doesnt have an ASD! Can a clinical pschologist diagnose or would we need a psichiatrist like at CAHMS?

I went to a private clinical psychologist for our diagnosis. But local ASD team rejected it (anything to conserve services) and did their own assessment. Both said ASD very quickly.

So hopefully that means clinical psychologists can diagnose the, thar is good toknow. DD has been seen by so many professionals that sometimes I wonder if everyone thinks someone else will sort things or already has. I am sure her meds affect her too which confuses things more.

You must have been so stressed when they said they wanted their own assessmemt before providing services.