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DS just diagnosed with mild ASD. What now?

(13 Posts)
Fishandjam Tue 18-Mar-14 09:45:50

Hi everyone,

I'm new to this board but several of you have responded to posts I've put in Behaviour/Development - so I guess it's no surprise I'm actually here now!

Yesterday my lovely DS (aged 4) was given a preliminary diagnosis of mild ASD. (The consultant community paediatrician said that if she'd diagnosed him a few years ago she's have said it was Aspergers, but that the clinical nomenclature has changed?) His difficulties are all very much around social interactions and imaginative play, and she felt that there was a lot we could do to help him on that front.

My head is in a bit of a whirl, even though it's not really a surprise that we've had this diagnosis. I've had suspicions that all wasn't quite right for many, many months, but every time I read up on symptoms of ASD he never really fitted them properly, so I would tell myself I was being a neurotic PFB mum sad Of course now I'm kicking myself for not having listened to my instincts earlier and growing the backbone to push for it to be taken seriously. In truth, he probably wouldn't be diagnosed now if he wasn't having severe difficulties in poo potty training (was constipated, now sorted out but still soiling himself several times a day). The GP took a load of details when she was doing the referral for the soiling problems and it was then that I felt able to flag up the behavioural stuff without feeling like I was making a fuss over nothing.

On the one hand I'm pleased that we can now access the help and support we'll need to help DS. But I am so sad for what the future might hold. I was a socially awkward and desperately lonely child, and I so didn't want that for him too. And I am beating myself up horribly for getting so angry with him at times when he's been uncooperative, naughty etc, as it was probably the ASD all along...

I also have no idea what is supposed to happen next. The paed said she'd send us some information in the post, and would also refer us to Occupational Therapy for help with DS's sensory issues (he hates getting dressed, for example). Otherwise she said she'd see us again in about a year, and that in the meantime we were to really concentrate on make-believe play with him and encouraging him to recognise the emotional states of others. And that when he starts school in September we should tell them of the diagnosis. Is that it? Should we be expecting anything else?

Also, please can anyone recommend any books/resources on how we can step into DS's world a little better, and help him to come into ours?

Just feeling all at sea here. Please help me, vipers!

(Thanks in advance and sorry for the essay.)

bialystockandbloom Tue 18-Mar-14 10:09:52

I'm sorry fishandjam - this is a horrible, horrible time when your worst fears are confirmed sad

Please don't beat yourself up about not doing anything sooner - we all do this (I buried my head in the sand for well over a year with my ds, and though I knew at the time he had asd I just didn't want to face it) but the key thing is you have now done a really important and brave thing. He is still young, and young enough to be able to really help him at a formative stage - and there is no point really in trying to forsee the long term future, as he'll probably be so different even in a year's time that you'll be amazed. I don't even think about my dd's future either, and she's NT.

And also, especially, don't feel bad about any shouting etc you've done - this is just normal parenting, and it's even more understandable that you've felt more impatient or frustrated because of the kind of extremes of behaviour that comes from asd. Blimey, I still shout at my ds sometimes now, even knowing that he has asd blush The important thing is that now you know, you can start to shape his behaviour by how you respond to it.

The best things you can do now, imo, are:

1. talk to school (I assume you know which one he's going to now?) about his diagnosis, what support he might need, and what support they can provide at this stage

2. look at statementing (which is being phased out to be replaced by EHC plans but basically same thing - support in school) - look at IPSEA website

3. the paed is right that working on things like pretend play etc are really important. As much practice as possible will help - either with siblings (?), cousins, friends etc, so get as many playdates as you can and be there to facilitate and support. Finding the key to what motivates ds most is crucial, as you can then use that to build games around to develop his engagement with you and others. We did a relatively intensive programme of ABA when ds was first diagnosed (at 3.6), which was the best thing we could have done, but it's expensive and not always practical - so worth looking into but equally you can do much of this yourself. If you want more info on this let me know.

4. hang around this board, as it is just about the most informative place to be smile

Fishandjam Tue 18-Mar-14 11:08:24

Thank you so much for replying bialy. Yes, at the moment I'm veering between a sort of "right, we now know what we're up against, let's DO this" mentality, and sitting in the work bogs snivelling. Neither of which are particularly helpful, I think!

Please forgive me for being utterly clueless about most of this, but my answers to your questions are:

1. We don't yet know which school he'll go to, we won't find out until this time next month.

2. Do we have to ask for him to be statemented or does this happen automatically?

3. He has a younger sister (age gap of 2.5 years) - in many ways it was seeing her develop and realising that she was so different to him that made me think he wasn't typical. Please can you tell me what ABA is? Any info you have on any of the imaginative play stuff would be really good - I'm not sure I know how to play with him in the right way to get the best results, IYSWIM?

4. Yes, I suspect I'll be on here a lot in the future!

clemmie68 Thu 20-Mar-14 14:28:40

I'm in the same boat but ds is 10

From what I gather you may have to fight for a statement but it's worth doing. As my son has got older the demands have become greater and it's caused great difficulties. I'm getting OT salt and ed Pysch reports then we apply for a statement ourselves. Schools are often not proactive.

Get tony attwoods book find a local support group all helped me

Good luck. You are not alone but that said I cry most days but it's early days... X

clemmie68 Thu 20-Mar-14 14:29:53

And finally the Burgess autistic trust has a comprehensive reading list

Pinkglow Fri 21-Mar-14 11:22:20

My DS was diagnosed a couple of months ago and he�s five. Even though the diagnoses was just a confirmation of what we already knew it was still quite a shock for some reason. We have found the NAS a great help and he�s going to a social skills group through them which he loves, Tony Attwoods book is also really helpful . DS is starting the statementing progress at the start of next term but other than that the school has given him support in class and is still you have to speak to the school about once you know where he�s going.

I know it can be abit crap but there does seem to be a lot more support out there than there was 28 years ago when my DB was the same age and wasn�t diagnosed until 3 years ago.

AttilaTheMeerkat Fri 21-Mar-14 14:13:28

"2. Do we have to ask for him to be statemented or does this happen automatically?"

You need to make an application yourself to the LEA and I would do that asap. IPSEA website is helpful www.ipsea.org.uk and there are model letters you can use.

Fishandjam Mon 24-Mar-14 14:03:21

Thanks clemmie, pink and Attila. I'm waiting for Tony Attwood's book to be Amazoned. We're still waiting for the paed's report; I know it's only a week since we saw her but it feels like she's dropped a grenade into our lives and then just fucked off without a backward glance.

I'm feeling pretty down about it all at the moment, not helped by reading on the Aspergers Foundation website that older motherhood plus a difficult pregnancy/birth are risk factors for AS (I tick both those boxes). Plus an older dad too... Still, I guess we are where we are.

I want to go to bed and sleep for a week.

autumnsmum Mon 24-Mar-14 14:36:53

Hi I have a ds who's 9 with aspergers and a dd4 with autism . I don't think that website sounds terribly helpful by talking about risk factors for as . Stick around here And the tony attwood stuff is great

PolterGoose Mon 24-Mar-14 14:41:31

Message withdrawn at poster's request.

Fishandjam Mon 24-Mar-14 16:12:45

Thanks polter and autumnsmum. That's comforting - I don't really need to feel worse than I do!

We're already experiencing a bit of hmm from some of the (few) friends and family we've told, as well as DS's nursery. Because he looks/appears too "normal". <sigh>

PolterGoose Mon 24-Mar-14 16:47:01

Message withdrawn at poster's request.

Fishandjam Fri 28-Mar-14 12:21:17

Update: we've got the written report through from the paed and she's referring us to some local groups and training courses via various folk (HV, SALT etc) Plus I can give a copy of the report to DS's nursery so they can't bury their heads in the sand!

I'm also deep into the Attwood book, which is proving to be a revelation on so many things.

Thanks for the book recommendation polter, will definitely look that one up.

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