Help us to make the best of our preliminary meeting with community paed, please

[MeAndMySpoon]

This is my first post here on Special Needs [nervous] though I've been on MN for years. I've namechanged because of specific details about DS2.

DS2 is 2.2 and we think he may be on the autistic spectrum. We've suspected this since he was about 18 months old. He is more or less non-verbal but has said the occasional word, usually out of context. (He very occasionally echoes bits of words we say to him.) He'll say something a few times and then never say it again, or perhaps 6 months later. At the moment, his only consistent word is hello ('ello! ello!') which he may say in the morning to himself, to adults if they initiate it, to his Thomas trains (he loves their faces) or just because. His speech is the most obvious feature of the way he is - he also has never pointed to anything, ever followed a point, doesn't like or appreciate any activities that involve joint attention (he likes leafing through books on his own, really doesn't appreciate me butting in and doing it with him!), doesn't respond to his own name, doesn't really follow instructions, often it's hard to tell what he's understood of what we've said to him...

Anyway, we're trying to be proactive and get him seen as soon as possible. He has the preliminary appointment with the community paed in a couple of weeks' time, and I'm beginning to worry that we'll be fobbed off or that whoever we see won't 'get' the problem. What are the chances of this, does anyone know? What sort of thing can we expect for this first appointment? Is there anything we can do, document or say that will maximise our chance of getting him assessed? DH is a (research) psychologist and though this isn't his area, we've chatted to some colleagues of his and they both think DS2 ought to be seen by the assessment panel, and also that there are 'early bird' programmes available that might help if he is diagnosed as ASD.

I feel like this could be the beginning of a long hard slog. Makes me feel tired just to think about it. Am so fed up with well-meaning friends telling me that he'll just wake up one morning and start talking in full sentances, or that their ex-boyfriend's sister's uncle was 'just like this' and is now a neurosurgeon or something. I just want DS2 to be able to have the best opportunities he can, and if I can't undo his problems, at least I'd like some sort of road map of what we can expect ahead. Is that even possible?

Our first appointment was pretty much a summary of how we got there - we discussed our concerns etc.

We did have to give them a family history / background info and had to answer lots of questions - pretty much the kind of thing that you get in online assessment tests.

I was unprepared for how emotional the meeting was for me, I was very tearful because (a) they were taking me seriously instead of fobbing me off (b) listing all my childs 'problems' was upsetting and (c) they obviously had some concerns that cemented my worries.

For that reason I would say write as much down as you can in notes to take with you in case your mind goes blank. If you have a dictaphone app on your phone then use that to record the meeting as my mind was a blank when I came out.

Hope it goes well for you

Like DeafLeopard says, the first appointment will probably be lots of questions.

I was asked all about my pregnancy and birth experience, DS's development - e.g. when he started to walk, speak etc. She asked about his diet and if there were any sleep problems or health issues. I had a really long list of concerns, but didn't use it in the end as the paediatrician seemed to pick up so much from the questions and observing DS. We're now waiting for S&L assessment and we're having a multi-disciplinary assessment in the summer.

If you do get referred on for further assessment then I'd highly recommend that you call up to check that the referrals have been made and received a few weeks after the appointment

Good luck with the appointment - it's such a stressful process.

If I were you, I'd do two things:

1. Write a summary of his early development - milestones, concerns, skills developed and lost, oddities that you notice, or even fleeting thoughts that stick out.

2. Video some attempts at interaction - nothing intense, just see if you can set a video camera of some sort (even your phone) up in a corner of the room, then as you interact with your DS, it will record. You might find you get some excellent footage of his indifference to your attempts to share attention.

Thanks for the advice! Sorry I didn't check back again - been frantic here with poorly boys, birthday party, etc.

I've been keeping a rambling sort of log of DS2's highs and lows and sort of assume I need to emphasise the stuff we're worried about on that, rather than the parts where I've recorded my excitement that he said something, responded in a certain way, etc. I wondered if the paed would ask to see our log/notes if we've made some, and therefore if I need to tidy them up a bit to make them easier to take in at speed? Lougle, a summary sounds good, as I'm inclined to ramble, especially when I'm stressed or nervous.

Thanks also for suggestions of videoing. As you've anticipated, having a camera anywhere near DS2 completely distracts him from whatever he was doing, so I think I need DH to sit quietly in the corner with my camera.

He's having a bit of a tiny surge forward in being sparkier with people, echoing more (my mum got him to say 'apple' - more or less - the other day), but he also displays behaviour that anecdotally (from reading MN) I know might be part of ASD traits - walking on tiptoes, running round in circles, flapping his hands excitedly when something he loves is on tv...