Aspergers/ASD support thread

duchy

Awww hun I just caught up with this.
I don't understand this report stuff-when Josh was diagnosed they did observation by the docs in the Child Mental Health unit -and gave me a dx from that of HFA-but told me it would not be confirmed until they had done a school observation-which might take months to arrange. I told them no....the school were very keen to get it seetled and had already said they would accomadate them anytime (and then rang the school and told them what I had said !! )-end result was an observation 2 weeks later and a rev ised diagnosis of AS. How on earth they can diagnose on second hand observations is all a bit beyond me.
I know you are gutted but ha ng tough and keep pressurizing them-and you know where to find me if you need an ear
Hugs

penguin83

Hi everyone just discovered this thread.

My son is due to see a paedeatrician soon (beginning of Jan) regarding the possibility of ASD. I am ashamed to admit I knew very little about it when the health visitor first mentioned it at his assessment (she was the one who referred him). His nursery and speech therapist have since agreed with her so I did some research into it and was shocked as it was just like someone had written specifically about him. He was due to see the specialist before Christmas but have so far had our appointment cancelled twice and now have to wait until the new year.

There are 2 things I especially feel bad about. The first is the feeling of guilt that I have in a way delayed getting him seen by not realising there was an explanation for his 'little ways' Even though he is only 3 (almost) I feel that I have hindered his development in some way by not getting advice sooner.

My other problem is my family. When I told my parents what the HV said they completly dismissed it out of hand, commenting that all little boys are like that, he will grow out of it etc. I'm sure that they are judt trying to make me feel better but it is having the opposite effect. Its actually making me feel more alone as I can't discuss anything about it with them. Luckily OH has been great as has my Nan. x x

Sorry if none of this makes sense, Its still a bit garbled in my head too! x

Snaggles

Penguin, it makes perfect sense, and I have felt exactly the same, so have a (((hug))) from me.

Please don't feel guilty though - it's extremely difficult even for professionals to diagnose, never mind those of us that knew little or nothing about it until it was mentioned to us.

My family have only recently started to become even remotely supportive - my Mum currently seems to think I will find it reassuring that he is only 'like that' because I'm 'like that' (as if I'm not carrying enough guilt already). But believe it or not, this is actually a step forward from them just believing that the reason Ryan behaves 'badly' is because he was, until recently, an only child :mad: and we haven't been strict enough with him. :mad: And they have finally stopped calling him 'heedless'!


Families eh?

Snaggles

Just catching up with a few posts that I've missed over the last day or so:

Blue Monkey - your son does sound like Ryan. And yes, we do find meals out can really test our patience, but I've recently developed a bit of a 'people that matter don't mind, and people that mind, don't matter' philosophy to help me cope with those pointed glares you get from peope who assume you are just a bad parent. And as me and me monkeys and strapped say, there are ways to deal with it, it's just trial and error to find what works for you, and what you find acceptable.

Shazrobo - I'm glad you have finally found the help you need for your twins, you must feel as though you have been to hell and back (((hugs))).

Kit - your project sounds really interesting, and as you can see from my sig, it fits exactly with how I feel! Good luck with it - do let us know how you are getting on. I wish there was something similar near me.

Duchy - thanks hun - I'm a bit confused by it all myself. I have decided I am going to sit tight until mid-January, and see what diagnosis we get (if any). In the meantime I am keeping a note of any unusual behaviour, in case we need any further 'evidence'.

kit

Snaggles wrote: »

Kit - your project sounds really interesting, and as you can see from my sig, it fits exactly with how I feel! Good luck with it - do let us know how you are getting on. I wish there was something similar near me.

Thank you.
We aim to become nationwide in the long term so hopefully there will be something near you by the time your son needs a job. I will post more details when I have them.... currently trying to get grants together to start properly.

Snaggles

Good luck with getting the grants, I think it will be a really valuable service you will be providing - it's a big ask to get people to understand it's THEM that need to change how they deal with the person with ASD, so having the facility to provide training to those that need it will be a massive benefit.

A_little_stressed!!

my brother has been diagnosed with Aspergers this year. He's 9.
What can I do to make the time I spend with him more enjoyable for him, a particular activity or environment?
I'm 21 with a 2 year old my self so our time together is minimal, but I'd like to make the most of it.

Snaggles

Ryan is completely obsessed with Doctor Who, and he is at his happiest when we re-enact episodes with his Doctor Who figures. I think Ryan honestly feels that he is from another planet - he seems to inhabit a different world to the rest of us sometimes. So anything you can do to join him in HIS world for a while makes him secure and happy.

I would take your lead from him - Ryan HAS to lead the play and HAS to win, but is constantly being told (by school, other children, other adults) that he CAN'T do this - so letting him play exactly how he wants for a little while helps him to feel that he's not so cut off from people.

Maybe ask him what he would like to do, and then completely abide by any rules he makes, no matter how daft they sound (as long as they're not putting anyone in danger).

If he wants to play lego, and put an elephant in the kitchen, or a sofa in the bathroom, let him.....in fact encourage him to use his imagination. If he wants to play a game, and skew the rules so he can win, play along, let him win (I always think that life will teach him he can't always win, so you don't need to ).

I don't know if I'm telling you the right things or not really, but just trying to picture the things that put a smile on Ryan's face.

Good luck with it - you sound like a fab big sister!

Snaggles

Oh, I just wanted to say as well, if anyone gets chance to go on a 'Parent Survival Course', do take it - I was really reluctant, because I thought it was like admitting I was a bad parent, but it has been a godsend.

The changes to Ryan are minimal, but the changes to how I react to him (and particularly how hubby reacts to him) have been huge.

The course we attended was based on the Webster Stratton 'Amazing Years' programme, and I pictured it being all airy-fairy and a waste of time, but it is all so logical and common-sensical (yes, I'm pretty sure that IS a word....lol). I can't recommend it highly enough*. We were referred by CAMHS because we asked them to help us with new ideas for helping Ryan manage his behaviour, but I'm not sure if that's the only route to getting a place on a course.

Edit - sorry, I am just having a little chuckle at what Ryan would have made of that* sentence! I confused him this morning by saying 'be careful you don't hit your sister with that bag - hurting her is the last thing you want to do'. I think he really thought that I had a list of things he wanted to do, and hurting his sister was on that list, albeit the LAST thing on the list!

chardonnay_2

hiya, i have some experience as my younger brother has dyslexia and attention difficulties. my oldest stepkid is now in third year at scottish high school. he has been diagnosed as having dyspraxia and some attention problems (not sure as mum hasn't been totally upfront about stepsons problems _ not sure if anyone has totally explained his problems!) i have recently given his mum a copy of the help that is available for children with learning difficulties at exam time - unfortunately she had never heard of the help that any child is available to.