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HELP NEEDED! DS 3.5 poss Aspergers / huge inflexibility issues

(13 Posts)
NourishingButtons Thu 11-Apr-13 17:54:30

I am about to crack, my son has always been ridiculously hard work and as time has gone on, I have stumbled around and finally think I may know what is wrong - Aspergers. I mentioned this to pre school and the next day they had written out a list of the traits and ticked 6 out of nine of them.

His main trait that causes us huge problems as a family is his inflexibility, not as in a routine, but his whims, if things don't go as he expects them to (which is hard to predict) then his reactions are immediate and very strong. For example if its the wrong glass, or the water isn't filled to the right level (and once he is in this meltdown everything is wrong, whether it be saying the sky isnt blue if you get my drift)

He is very very intelligent with an amazing vocabulary, which actually makes this issue harder as he is a force to be reckoned with.

Basically today has been the worst day of my parenting carer so far. After pre school went to the park, a few of his little friends were there and all fine, he then wanted water and I had moved his beaker from his lunch box bag to normal bag and it unleashed a terrible tantrum. throwing things, screaming etc, I had to walk home with DD in stroller and him 3stone big 3.5 yr old) fighting me under my arm, or holding him on the buggy board and running. Once home tantrum continued for over an hour, he just screams and shouts, even if I hug him which he asks for) he complains its too tight etc. Then his little sister screams for hugs and its one huge screaming fest for my cuddles. he basically wore himself out and fell asleep at 4pm and is still asleep now (6pm).

Can anyone offer me advice of how the hell to cope, strategies etc

TheAccidentalExhibitionist Thu 11-Apr-13 18:34:48

This sounds really tough, have a brew
Perhaps it's time to ask the GP for a referral to CAMHS?

NourishingButtons Thu 11-Apr-13 18:38:14

Ive asked but they can't afford aspergers in North Somerset, I've been told a year wait, and we might eveb get our referral batted back and have to apply for exceptional funding to even get referral accepted. I first went to docs in November and only just at this stage, its ridicuolous!!

TheAccidentalExhibitionist Thu 11-Apr-13 18:40:49

We had my DS diagnosed in North Somerset. The referral took 18 months for the first assessment.
I'm not sure what to advise. Did the refusal to assess come from the GP?
The other option is to wait until your DS starts school and get the referral through them.

willyoulistentome Thu 11-Apr-13 18:46:09

Hi there. My sympathies. I feel your pain. There's a really good book by Tony Attwood which will give you a really compehensive picture of AS. We went through BUPA and were seen within two weeks, so I cant help advice there.

Back with a link for the book in a mo.

sponkle Thu 11-Apr-13 18:46:53

You have my sympathies, it can be really hard but don't let it get you down. Google/call the National Autistic Society. They are so lovely and take time to talk you through everything, make useful suggestions etc about what you can actually do both on a practical day to day level and getting diagnosed/support level. HTH

willyoulistentome Thu 11-Apr-13 18:49:43

Dammit. Cant link. It's called "Complete guide to Aspergers syndrome."

NourishingButtons Thu 11-Apr-13 18:55:31

Thanks Sponkle will check it out.

My OH is just starting a new job and we will try to get DS on medical insurance, will it matter that the issue is already 'out there'?

I am waititng to speak to the GP tomorrow, he referred with no problem but explained about the referral maybe being sent back by the community paed and then we'd have to apply for something called exceptional funding to have it accepted by them.

Pre school have referred him to something called Link Inclusion Scheme, on recommendation from HV as she said there was nothing else she could do.

It is such a postcode lottery, a friend about 3 months in front of us in going to the GP has had full assesement, her son observed in pre school/home, an early birds course for parents of newly diagnosed kids - we get f all, except a fight to even get on a long waiting list ggggrrrrrrrrrrrrrrrrrrrrrrrr

Oblomov Thu 11-Apr-13 18:57:01

Ds1(9) disgnosed AS.
Ask for this thread to be moved to the Sn section. You will get a lot of help and support there.
So sorry, what stage are you at? 18 mths wait? For what exactly. I do not know how somerset works. But are you waiting to see Paed? have you actually got a referal? Ask your GP for a copy of the referal letter. Then phone paed and chase. If the waiting time is 18 mths. I rang and rang and rang, and asked for any cancelllation. I always think 'bothering' them helps, to bring your name back to the forefront of their minds.

There is an AMZING support network, for AS, on MN. I know, becasue I have been there.
Come. Let us help you.

willyoulistentome Thu 11-Apr-13 19:07:26

We got two hours initial consultation via BUPA. Were advised by psycologist that BUPA wouldnt fund any more for ASD , so she gave BUPA 'anxiety' issues on her paperwork. Aspergers on all other reports. They agreed to a further 8 hours. That's it though. We're on our own now.

Oblomov Thu 11-Apr-13 19:37:24

I got in on BUPA initially too. And then at the same time kept requesting that I was re-referrred on the NHS. Made it clear I couldn't afford to carry on privately for long, and that I needed the original Gp referal to be speeded up. Thats did actually happen. Never mention anything. String it out. For as long as possible; "He needs to been seen by the paedetrician. We are not sure what it is yet". When speakign to BUPA, play dumb.

noisytoys Thu 11-Apr-13 19:47:22

It is definitely a postcode lottery. DD was diagnosed AS at 2.5 but they only referred us because of the family link and it was so obvious she has it. It's a long road though sad

NourishingButtons Thu 11-Apr-13 21:46:46

How do I get the thread moved??

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