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SN children

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Original poster

ASD dx today - Ben10

20 replies

Ben10NeverAgain · 04/04/2012 10:19

I have received a call this morning from DS's paed to apologise for the delay since his panel meeting on 15th March and that she doesn't have any imminent appts but that he has been given a dx of Autism Spectrum Disorder. I was expecting an AS dx but as he didn't speak till 2 they are going with the ASD dx.

We still haven't had the post-dx slump yet but I know it is to come. I've gone into organisational Ben 10 mode - calling the council to find out about their short breaks service.

I was going to buy him All Cats Have Asperger's but now he doesn't I'm looking for recommendations for books that I can read to a 6 year old and that he can read himself if he wants to. He is HF so can understand the concept of "difference" and "being wired differently". We told him about his dyspraxia dx at 5.

I'd like to thank everyone for their support since I fell onto this forum in October 2010 when school first raised their concerns that he was rolling under the table .

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StarlightMcEggsie · 04/04/2012 10:43

You know, if you feel AS is the best explanation NOW then you can use it. The key thing about a Dx of ASD is that it doesn't rule out AS. It's an umbrella term.

If you think information about AS will be the most helpful to him then use that.

I used a variety of terms (not with DS though as he appears to have no interest yet in such discussions) depending on the context. He most definitely was nowhere near AS when he was Dx but his specialist school often refer to him as having AS.

StarlightMcEggsie · 04/04/2012 10:44

Sorry. My manners.

Sorry to hear your worries confirmed.

Original poster

Ben10NeverAgain · 04/04/2012 10:48

Thanks Star

I knew that he was in between the two dx tbh. He is doing OK at MS school and is only struggling socially and now with more complex maths questions and story writing where imagination is required.

I probably would have asked for a dual dx if she thought it was AS like Moosemama did but she was clear that due to the language development (she had all of the EYFS records from nursery and reception) it would be ASD. I don't have a problem with that - esp if it means that he gets the help that he needs going forward.

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StarlightMcEggsie · 04/04/2012 10:51

What I meant was that if that book is still relevant you just tell him that AS is a type of ASD similar to the type he has.

Don't dismiss useful tools simply because of the label used iyswim.

auntevil · 04/04/2012 10:58

caught between a and a . at confirmation, but that you now have something to waft in front of organisations that can give you support.
I've used the hard wiring link between dyspraxia (DS1) and ASD (his friend) before - they seem to understand each other more - a common bond.

UnChartered · 04/04/2012 11:04

wow

IKWYM about the slump - we'll be here for you when it hits, be kind to yourself, as well as DS.

for the support and advice you've given the likes of myself here too, will you stick around?

Original poster

Ben10NeverAgain · 04/04/2012 11:11

I'm not going anywhere .

That's an idea Star. That'll teach me for thinking literally again!

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starfish71 · 04/04/2012 11:41

Not sure congratulations is the right word but you know what I mean! And well done to the paed for ringing you instead of making you wait even longer for an appt.

DS2 has autism but I used the all cats book as he loves cats! It is a lovely book

Take care of yourself

coff33pot · 04/04/2012 11:43

I am really glad for you that the waiting game is over and that you can now move on to wedge those doors open for help :) But also sorry at the same time that ASD has been confirmed.

I am also sending you all the biggest bear hug plus for when it hits home xxx

Ineedalife · 04/04/2012 11:53

Am relieved for you ben10, at least you know for certain.

Its not that long since we were in the same place as you. I totally expected Dd3 to get an AS dx. She got ASD too. I did wonder if it was because they are not going to be using the AS dx after this year.

I have also considered telling Dd3 that she has AS, i really need to tell her something and think AS would be less scary for her. She recognises herself in Gus off tracy beaker and he has AS.

Since the dx Dd3 has been involved with some social skills groups at school and has been put into a maths group to help her with her problem solving.
But mainly the staff have been able to support her much better generally.

Be kind to yourself and I hope your Ds can access some support.

Original poster

Ben10NeverAgain · 04/04/2012 12:29

Ineeda Have you seen the Newsround Autism and Me special? I only saw it the other day and it was fantastic at showing the range of the spectrum. DS doesn't watch Newsround as it isn't one of his programmes that he has on repeat (can I just say I hate Disney XD ).

Have had my first experience of the support. Called the number on the website who hadn't heard of the "local offer". Got a call back from another team. She couldn't really help as her playschemes are for statemented children but will give me a number of another team. And the roundabout continues!!

I'm not allowed at the moment but will keep it on reserve for when I'm off these tablets thanks :)

I'm going to order the book now

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Ineedalife · 04/04/2012 13:28

Yes we have seen it, although Dd3 didn't take much notice of it, it was good for Dd2 to watch it though.

The support group that I go to are going to try to run a stay and play type playscheme in the summer which willl involve trips and activities. parents will have to attend but I am not too bothered about that, at least it will give us something to do.

I am finding it harder and harder to organise playdates especially now that most of Dd3's friends have physical disabilities and come to school on the bus so aren't local and also I can't just go and pick them up and go somewhere I have to rely on them having a carer.

She is bored this week and sending us bonkers.

I might take another look at the "cats" book too.

Take care of yourselves and hope you can get some stuff organised.

SallyBear · 04/04/2012 15:15

Ben10. Onwards and upwards. It sucks getting the Dx but now you have it you can push for things to be put in place for your little sunshine. So a blessing in disguise.

You sound like a practical person, but please allow yourself some downtime to have a solitary wail. It helps to vent.

EllenJaneisnotmyname · 04/04/2012 18:31

Hi Ben10. It's funny how even when expecting the DX and wanting to know! that it still hurts. Well, not funny exactly, but YKWIM. I took my DS2's DX very calmly, (he wasn't talking until 4 so no AS doubts for me) but crumbled a bit a few months later.

Now he's 12 and HF I do wonder why they bother differentiating. He's not at all typically AS, but his friend with identical DX and delayed speech is very 'aspie.' Personally, I have found an ASD DX to be more useful than AS to whack the LA around the head with.

We're always here, someone is at least, if you want some hand holding. Of course, you may get some unexpected straight talking from the less empathic of us, too! All useful stuff.

Original poster

Ben10NeverAgain · 04/04/2012 18:54

THank you. I think some straight talkign is what we all need - esp if we are some of the ones that take everything too literally

It is funny. DH and I are both at home ill and we watched The Undateables which had a man with AS on it. So many things that he said, we just looked at each other and cracked up! Now we have it for definite I feel happy to join the local support group, I get lifetime NAS membership (not sure what that actually gets me?!) as the Bank Worker's Charity is supporting them and we get to move forward with whatever life gives us. :)

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StarlightMcEggsie · 04/04/2012 19:02

I watched the undatables too. Was a bit at the name and it's definitely a car crash tv series, but the episode last night wasn't too bad after all.

I liked it that all three of them found someone nice that were interested in them but two of the 'undatables' turned down the opportunities to see them again.

SallyBear · 04/04/2012 19:07

That show has caused so much outrage amongst the craniofacial community. Sensitive stuff. Apparently the NAS lobbied last summer (with the Tourettes Support Group) to have the title changed but their pleas were ignored

StarlightMcEggsie · 04/04/2012 19:12

I'm not surprised it caused outrage. But channel 4 'documentaries' are going down the pan IMO.

I didn't plan to watch it actually but DH heard a radio interview about it and put it on. I thought it was interesting watching the mother of the ASD guy in particular.

StarlightMcEggsie · 04/04/2012 19:13

Sorry Ben-10, shoukdn't really hijack this thread!

Original poster

Ben10NeverAgain · 04/04/2012 21:16

I loved the mother of Richard. She was so gently trying to help him deal with change but still living his own life. The name is terrible though. It is one of those programs that you think that they are going to poke fun like the fat programmes but I thought it was actually very good. I thought the Guy with tourettes was great and she dealt with his tics in just the right way - hope they stay together. They seemed a lovely pair.

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