First full paed/slt appt tomorrow - gearing up for diagnosis

[BialystockandBloom]

After having waited 7 months since we were first referred, we have our big appointment/assessment for ds tomorrow. I don't know obviously, but it seems very possible they might diagnose him at the assessment.

I've been trying not to think about it, and having started ABA programme recently my time has been very much taken up, but couldn't help feeling a big lump in the throat when saying goodnight to ds tonight - to think that this time tomorrow he will not just be ds, but an autistic child.

Does anyone have any advice about anything I should be asking? Should we act dumb in terms of expecting provision etc? Could we expect any advice about schools (he'll be starting next year so we need to apply soon)?

Just be honest and yourself - it may be a bit of a blur.

Even if you ds is ASD then he's still your little boy and you will love him just as much, if not more, because of it.

You will have to don the flame-proof iron knickers of the SEN Mum though at some point, but don't worry about that just yet - just focus on tomorrow and see how you feel then.

Thank you for your responses. I've pretty much accepted ds does have asd, but just wish I could fast-forward tomorrow, to skip having to hear the words said out loud.

Though I don't really know what to expect - would they be able to specify after just 3 hours where ds is on the spectrum? Tell us how hf (or not) he is? Could they tell us if he has learning disability too?

Starlight thanks, that is useful to bear in mind. I wondered whether to mention us doing ABA - just didn't know if it would prejudice them if they think we're well-off middle class parents who can easily afford £25k per year so therefore will try to get away with as little support as they can. Or doesn't it work like that - are they not the people who will be doing the SA/statement?

Thanks.

We had a similar appointment very recently, combined SALT/Psych/Paed, it was 2-3ish hours...lots of questions to parents and a SALT assesment for DD. After a short break they came back in with an initial dx ASD with a significant problem with her understanding of language...so no report until next assesment by psych...just had that this week. Suggested AS if no language problems so due to that lower down the scale but not sure where.

As for offerings...we got a lovely big book..'so your child has ASD' ...they expected tears I think but I was prepared and didnt...we got a referral to SALT in school, suggestion of 'support and visual aids' in school but thats up to us to sort, a two day ASD course for carers and another appointment with Psych...which was this week.

Advice:

we took a diary/list of traits.

They ask a lot about early development milestones...we looked at photos to remember our time line, walking/talking/sleeping.

We took a packed lunch for DD. :)

If your asked to another appointment for further asessment ask when and get them to write it on your file..you dont need another long wait...I got an appointment for 3 weeks later after Psychs holiday. :)

Take a notebook...names dates..dx terms...it can be a lot of info at once.

We asked about additional support services on our second visit so just give yourself time to digest whats said. I had a delayed reaction...especially to DDs language problems...Id focussed on ASD.

Good luck. Let us know. x

Thank you so much wooly

It's interesting what you say about your dd's language - until very recently I didn't really think ds had too much of a problem with language. It's only since we've started ABA I've realised actually how much he doesn't understand. 6 months ago I thought we may have been looking at HFA/AS but now not so sure. In fact I think his language delay may be his biggest problem and barrier to social interaction.

I will update after tomorrow's appt. And will take a notebook (I hadn't even thought of that!)

Ill let you know what DDs dx is but I was lead to believe it can still be HFA...language disorder as well. So when we work on the language the dx of HFA dx will remain. :)

Good luck again. :)

How did it go? Been thinking about you all day. Hope your ok? x

bump

bumpety

any news?

Hi, thanks for your messages

Computer broke over the weekend so couldn't update...

Well yes we got a dx of ASD. No real shock as we were expecting it (but part of me I guess hoping otherwise). They said he is very borderline - scored 9 on ADOS test and 8 is the cut-off. The paed actually said it was up to us if we actually wanted a dx of asd at all - said we could review again in a year if we wanted, or could have the dx of asd, which we chose. Basically they said he presents as having 'mild' asd - deficiencies in all 3 core areas but mild delays in each. They (there was SALT there too) rated his language as pretty good - I was a bit surprised as I thought it was more delayed.

Anyway, they then just basically said here you go, your ds has asd, he won't need a statement, just send him to ms school, they'll provide support, here are some leaflets from the NAS, off you go

Lucky we're doing ABA already, and bloody lucky I've been on MN - as if I'll just leave him to it to 'cope' in ms school with no support!

Feeling ok actually - pretty down on Friday night but now we have the actual dx, and have already started doing something about it (ABA) we just have to get on with it. Next step is telling family/friends etc which we haven't been brave enough to do yet.

Glad it went ok. :)

I found telling friends/family easy but getting them to understand hard. The usual comments..'She looks ok'...'Shes having you on'....'All kids do that'...'Its just a stage'....but some were very supportive and understanding. :) It seems to take a while for men to accept it IMO!...But they do. :)

No SALT then?
Has he had any cognative tests?

Glad your ok.

Hi wooly - thanks for thinking of me

The paed is chasing up our referral to SALT so hopefully we should be in the system for that - not that I'm holding out hope of seeing anyone for years ages!

I chased our referral for SALT today...I was supposed to be learning about ASD. ..well she worked in the same building..(guest speaker at workshop) She said the allocation meeting was today so should hear soon. :)

...but a paed and Psych both said they'd gogetacoffee chase up our referral.