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No diagnosis. What now?

(10 Posts)
newbrunette Sat 13-Oct-12 20:31:45

We went with ds (aged 5) to a paediatrician on Friday and she was very confident that he didn’t meet the criteria for ASD or Aspergers. In many ways, I wasn’t surprised as every time I’d read about it or done tests eg the CAST test, I’d felt sure that he didn’t quite fit the picture. He doesn’t have any obsessive interests or need for routine, for example. His main problem is lack of social interaction with his peers.

The paediatrician listened really well and seemed to have a good understanding of ds and I have confidence in her decision (though having a slight panic about whether we remembered to mention everything/presented true picture of him). She was happy to discharge us there and then but we’ve agreed on another appointment in a year’s time.

We asked lots of questions and she mentioned ADOS – she felt sure that he wouldn’t score highly on this to be diagnosed with ASD. But she agreed that we could request assessment when we come in a year if we thought things were getting worse.

She agreed with us that there were also some dyspraxic tendencies – but, again, probably not enough for a diagnosis. She said she would refer us to OT (she mentioned that there could be visual processing problems) but that the waiting lists were so long that we probably wouldn’t be seen for two years.

I have really mixed feelings about it all. I’ve spent more than two years worrying and wondering constantly – partly dreading a diagnosis, partly thinking it would help to get him some support. Now I feel a bit lost. OK, so he doesn’t have Aspergers but how do I help him? We spent a gruesome (more for me than him I think) afternoon at a birthday party this afternoon – ds looked so uncomfortable and didn’t really interact with any of his classmates. I think the only bit he really enjoyed was the food.

I’d really appreciate any thoughts on where I could go from here. I can’t bear to see him slip further and further behind his peers socially, and I need to know how to help him and to understand him better. Should we look for private OT? Or Ed Psych? Other things I’ve read about are retained reflexes and auditory integration training . Any experience of these? And we’re also looking into Tinsley House. Just confused about what to do when and how.

cansu Sat 13-Oct-12 20:41:17

He may not fit the criteria for an asd diagnosis but that doesn't mean he doesn't have some asd traits. I guess what you need to think about is more how to help him socially and also maybe accept that he isnt typical and perhaps won't enjoy parties etc. I would think maybe about nurturing his interests and buildling his self esteem so he can be happy doing what he is interested in. you can always tell people that he has some aspergers traits to help explain why he struggles. if you have the follow up appointment this is good as if his difficulties become more noticeable or have a greater impact on his happiness and ability to function you can revisit the idea of diagnosis.

piglettsmummy Sat 13-Oct-12 21:58:51

I have been in a similar situation but for a completely different diagnosis. Doctors tested my daughter for a range of conditions but could never diagnose. One of the test (for a genetic condition ) came back negative but she seemed to fit that more than any other condition. Just because your son didnt film all the requirements for a specific condition doesn't mean it cannot be considered. With my daughter undid a lot of researching 14 months Infact but i cane back to this same condition and then after explaining to her doctors that's he only one she fits into even if shes isn't a 'typical' case doesn't mean she doesn't have it. Here is ably of diversity between SN kiddies and your son could be a unique case? I say push for any test you feel necessary, even if it comes back negative it's one condition ruled out and one step closer to an answer smile good luck smile xx

coff33pot Sun 14-Oct-12 00:35:48

Research, pick up advice/strategies from the threads here and try a few out. Self esteem and team building is a good idea.

Also consider the fact that you had some concerns to warrant you wanting him assessed. So still keep a diary for the next 12months till your next appointment. List any concerns that arise, how you dealt with the situation and if it was resolved or made it worse.

Keep a log of school issues as they pop up too.

It can help profs to see an overall picture of him rather than just on the appointment day and also help you maybe find areas that trigger any issues or atrategies that benefit.

Despite not getting a DX at present he still has needs to be addressed so do what you are able and what how he matures in the next year x

worriedmumonline Sun 14-Oct-12 16:16:40

Just wanted to share what I am learning from another mother's blog, its called
Looking after very disabled children really puts us into a world unto ourselves

newbrunette Sun 14-Oct-12 19:10:26

Thank you so much for your replies. I've been reading this board for months and always seem to come on with questions. I don't feel I have the experience or insight yet to offer much in the way of answers. I'm truly grateful for the time everyone takes to answer and the wise advice given, and I hope I might to be able to help others at some stage.

Cansu, thank you - nurturing his interests and building his self esteem sounds like exactly what I should be doing, and am probably not doing very well. I will keep trying.

Piglettsmummy - thanks for your message. I guess I'm starting to realise that all that tireless researching isn't going to end here, just because of one paediatrician appointment. I hope you got a useful diagnosis and support after all your efforts.

Coff33pot, thanks so much, great advice. I will start recording incidents in more detail. I think it will really help me - I've been meaning to do it with food (which seems to affect his mood/sleep) so will add that in too. Hopefully recording things in detail will help me see patterns etc, and figure out ways to help him.

Sorry if it sounds like I'm worrying about nothing. I do know that things could be very much worse. I just feel sick at the thought of him never having any friends and being at the mercy of bullies throughout his school career. Also worried that the school - who have been less than helpful so far - will take us even less seriously now. Anyway, thanks again so much for your support and advice.

SilkStalkings Sun 14-Oct-12 21:35:22

If you find treating him like he has an ASD helps you all, stick with it. It doesn't mean he doesn't have SN and that you don't have to work harder than regular mums, you do. Sorry your paed not helpful, well done for refusing to let her drop you!

BigWitchLegsInWailyTights Sun 14-Oct-12 23:00:48

I just wanted to say DD is now 8 and has attended two different schools...both schools have investigated her for displaying some signs of AS...and both have found her to not have it.

She struggled with various things...socially and also with routine well as loud noises and some textures...yet was and is very articulate and unusually bright with some things...big troughs and peaks in her abilities....

She has got slowly, slowly better at everything...she doesn't yell when a hand dryer goes off...has friends...chats back when people speak to her...I don't kow why I'm saying all this....I suppose it's because sometimes we want an answer as to why our DC aren't "like all the others"

But sometimes there is no answer. They're just unusual...or unique. Stand-outs.

I accept that she's not got AS now....

coff33pot Mon 15-Oct-12 00:41:21

You are not worrying about nothing newbrunette as you have valid worries and concerns about your DS.

Incidently a child can have a social communiction disorder/issues or anxiety without it necessarily being ASD smile

As for school...well tell them enough that they need to know. That is that currently he is still under assessment. That it is agreed it is best to see how he matures further over the next year to rule in or rule out ASD.

Tell them for the moment the main concern is his social interaction with peers and can we all sit down and form a plan on how to help him improve this.

Take the lead the school can then follow x

coff33pot Mon 15-Oct-12 00:44:43

Make an appointment with the Senco, teacher and head and go in armed with any social strategies you can print down on a piece of A4 and hand it out.

Like circle of friends
Small group games
Picking a buddy to do a specific job for the school together
and anything else you pick up along the way x

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