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No diagnosis expected for 18 months (potentially) (Long rant sorry)

(7 Posts)
Jerbil Sun 19-Jun-11 21:51:49

I have a meeting tomorrow and hope to get some more insight into my 5&1/2 year old DS's behaviours. Having said that, the last time we met the psychologist said briefly that the upshot of 3/4 months of tests and observations and history gathering is that they are just as confused as I am. I respect her honesty and do trust her judgement. She told me a few weeks ago that according to his history she would have said ASD, but according to the ADOS and school observations then she says not. She, SALT and Paediatrician all say he is fidgety and has a short attention span so the psychologist said they need to keep an eye on this as it could be ADHD. They won't diag ADHD till 7 years.
The paediatrician saw him last week and has said she'll refer him to an occupational therapist for poor fine motor skills and perceptual difficulties so we may be getting some help there but apparently it's a long waiting list.
My DS has huge issues with food to the point where food was mentioned in a particular part of an IQ test and that was the end of that day's testing after point blank refusal to participate. Additionaly to this he has what I thought was OCD, but apparently it's a very strong opinion on how things should be and very rigid thinking.
He struggles at sporting activities with his peers, doesn't play imaginitavely very well at all, refuses to take part in games where he has to pretend, and doesn't always socialise with the peers. You may think he was extremely shy, but he could meet his best friend in the street and because they're not in school he would not speak to them (he never says hello to anyone!)
Because my DS is a very good boy in school (he is petrified of being told off), the teachers see only some of the difficulties we have at home. having said that they do notice some things... food issues especially.
I am just sounding off really but feel that without a diagnosis of some kind help at School will potentially diminish and perhaps be discounted due to me being an anxious mother (aren't we all?).
I just want to help him, and want to say to the psych tomorrow "OK if he's not got anything then why does he do this, this, this, this , this etc etc." But I feel if tonight's anythings to go by I'm going to crumble and say nothing.

EllenJaneisnotmyname Sun 19-Jun-11 21:58:44

Get it down in writing, Jerbil. A list of your concerns, a list of questions you want answered, what you want to get from this meeting. Then make sure you go through the list before you finish the meeting. It sounds obvious, but my mind has often gone to pieces if I'm upset, or feeling intimidated. Good luck for tomorrow.

Agnesdipesto Sun 19-Jun-11 22:57:40

Say if its too tricky a diagnosis can then send you to a tertiary centre which specialises in tricky cases eg Elizabeth Newson Centre in Notts, Lorna Wing Centre etc? If they wont ask your GP to refer you. NAS have details of centres that take referrals where local services are not sure.

IndigoBell Mon 20-Jun-11 04:25:19

I would say don't worry about a dx at this point, and look at things you can do to treat his symptoms.

Loads of therapies are aimed at kids with 'ASD/ADHD/Dyspraxia/Dyslexia' - because there is such a fine line between them, it doesn't actually matter which dx you have - the same thing works for all of them.....

For example ( a small list)
Dore
Sunflower
Sound Learning Centre
Hemispheres

So I would really be researching ASD, decide what you want to do, and then do it...... Highly unlikely that any treatment for ASD would be bad for your DS....

Also highly unlikely that a dx will bring you much more than you already have... (Besides maybe medication.....)

Triggles Mon 20-Jun-11 08:07:11

DS2 displays quite a few of the same behaviours, although he isn't shy about displaying them at school as well grin, which is why he has FT 1:1. But we've been told an official diagnosis won't be given until he is about 7 or so. The paed wants to make sure he's past certain developmental milestones before she makes a firm commitment on it, as she feels that so much can change over the next few years. We still have a working diagnosis (i.e. "suspected" or "being assessed for") that is used when we need letters and such from her.

But while initially it aggravated me, I now realise that having a diagnosis isn't going to change anything for us right now. He is receiving support based on his needs, not a diagnosis. And as long as he is getting that support, I am not worried over getting a firm diagnosis anyway. I'd rather they take their time and observe him over a long period of time and get it right, than rush to judgement in this particular instance.

Tiggles Mon 20-Jun-11 12:03:46

Just to throw something else into the pot, but, both my DSs, (I think), one with ASD, one suspected, are faceblind. So the elder wouldn't acknowledge his friends in the street as he doesn't recognise them if they aren't in school uniform! The younger runs up to random children with vaguely similar hairstyles to people in his class yelling at them thinking they are his friends and can't understand why they don't know who he is!!

Jerbil Mon 20-Jun-11 20:50:31

Thanks for all you messages. It's good to hear other people's experiences, and great advice thanks.
Appointment today was nothing short of a disaster. Double booked or I got the day wrong (don't think I did). I find out my new appt tomorrow!
thanks again

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