Hello

Hi just wanted to say hello and welcome.

I agree with Sam, give the helpline a ring and talk things through..they can send you loads of stuff via email afterwards to help you work out your next move.

Come on here and rant when you need to..it does help when you've had a particularly hard time.

Take care

Oatie

Hi jd18,

Im glad my reply helped a bit, staying calm is very hard, i think we should schedule a time when we can have our own cracking up times coz i feel lots better for letting out that built up frustration! lol!. But seriously Its not just our kids who have to deal with the frustrations of ASD and its impossible to keep calm the whole time, sometimes you need to vent as well.

I think it might be worth looking at reassesment earlier than that as it would be better for him to have a diagnosis pre transition to secondary education as this is a very difficult time and the more knowledge a school has the better. I would give the NAS helpline a ring and get some advice on this issue as im just a mum and they will be able to help you more.

Good luck to you to.

sam

x

Hi Sam

Thank you so much for your reply and for telling me about your son - I really hope that you are getting a lot more help for him now and that you are having less "cracking up" episodes (I know just how you feel).

What worries me is that we've just been given this vague diagnosis and left to get on with it and I've read so many times on this site about people who are now adults who went on to develop other problems due to thier condition not being recognised in earlier years. We've been told that he will be assessed again when he starts senior school (4-5 years away). So in the meantime we're just trying to manage, reading as much as we can and (hardest of all) trying to stay calm with him. It's so frustrating when I know people are thinking he's just really badly behaved and we've never taught him right from wrong.

Anyway thanks again and good luck to you and your son. Cheers

JD18

Hi,

I also hate it when they use sentances like that, my son was first given a diagnosis of dyspraxia with autistic "tendancies" when he was 4. I didnt get any support other than the endless hospital appoint to deal with his physical difficulties, they are not major difficulties just complicated.

It wasnt untill he was 14 and i cracked up at his peadritrition (sorry i cant spell to save myself) appointment about his behaviour that they then realised how much he was struggling socialy and behaviourly. I was lucky in one way that we didnt have many meltdowns outside of the house, i think this was due to him being in wheelchairs/ buggys when we are outside, he can walk just not far and it tires him out. and general avoidance of social situations, he would sit and rock as a warning sign to give me the chance to remove him to somewhere quiet before a meltdown happened.

Anyway it then took untill the begining of this month, he is now 16, to get through the waiting lists and testing process to get a new diagnosis of dual high functioning dyspraxia and AS. Now i can access all the support like this fab site and give schools and colleges the right info.

Hang in there and ask for second opinions, his psychologist did say that when he was younger it would not have been as easy to diagnose AS as his physical difficulties were thought to explain a lot of his immaturities. I dont know if that true or they were just trying to excusse how it had been missed earlier with all his contact with the health service.

Best of luck to you, hope this site helps and it helps a little to know that they do use sentances like that to other people.

Sam

Hi

Thank you for your reply. Just wanted some geneneral advice about how other parents manage behaviour - my son seems to have meltdowns at almost all outside situations eg parties, outside events even playing in the park and it can be the most trivial thing that sets him off. We are getting to the stage of being on edge every time we go out and avoiding lots of social situations, it is very wearing. He was first investigated for aspergers at age five and its taken till now to have been told the actual phrase was "we don't think he has aspergers but we can't rule it out as he has very definite aspergers tendancies" so make of that what you will! Anyway just wanted to sound off really and talk to people who really know how to manage this on a day to day basis and not "experts" who see him for ten minutes and come to a decision about him. Thank you.

Hi JD18, 

You might want to start by letting people know what your situation is or if there's anything in particular you'd like to ask about then just let everyone know. 

This is a public forum so people can't chat in private but just feel free to share here anything you'd like people to discuss or support you with.

Of course, if there's anything I can help you with.