Do you find that people are not willing to see the uniqueness of your child, but just see all SN children...

[emkana]

... as one really?

Ds has dwarfism and some developmental delay. When people ask me about him and I tell them just that then they'll say something like "oh yeah just like xyz's ds" or something and sometimes I happen to know the particular child and so know that this child has completely different problems to ds, and so it pisses me right off that people just lump everything together.

AIBU?

[yurt1]

Oh yes, or they assume all children with one diagnosis are exactly the same....

[emkana]

.

[mymatemax]

I can kind of excuse nt parents because often they are trying to find something to say & just getting it wrong.
What really pisses me off is the professionals or so called expert who can't see beyond the text book.
Like one paed who said ds can't have ASD because he is too well behaved or because he can show humour

[yurt1]

I gave a talk to some SALT students today and my final point was that one. I showed a slide with some pics representing autism deficits then a video of ds1 teasing me. (I;d previously showed a video of him cuddling up to me with great eye contact and singing). I also told them I hadn't always been believed in the past when I said he was doing stuff. Just tried to make that point really.

[mymatemax]

ds2's psych actually said his ASD is not that evident when he is happy & content & within his comfort zone & it was making her unsure about dx.
Yeh well he doesn't look like he's got CP until he gets up, but its there.

Good to hear your trying to educate, I think they need more real life & less text book learning

[yurt1]

I also recounted how he was initially misdiagnosed ('mild language delay at most') and how that completely messed up his assessments.

[mymatemax]

I wonder is there any other branch of medicine when they mis-dx so often, surely there must be some accountability somewhere.
I wonder what the statistics would show? Grim reading I expect.

[mymatemax]

sorry emkana - a bit off thread.

[2shoes]

oh yes they always start talking about so and so with cp...........

[yurt1]

and ds1 is hardly a borderline case......

[TotalChaos]

or their neighbour's goldfishes 3rd cousin - or if they can't think of one, just use Einstein as an example, who didn't talk till some advanced age and a)is now a doctor b)won a nobel prize c)now never shuts up.

[yurt1]

although I still get told that I must be imagining certain things and he can't be doing what I'm saying he is because he's severely autistic.

[Misdee]

maybe just slightly.

my neice and nephew both have CP, and i know CP varies in degrees and different sorts, but if someone mentions their child has CP then i do say neice and nephew do as well as it means they know i have some understanding of CP.

not explaining it very well.

[Blossomhill]

exactly lump them all in 1 pile, makes me so angry!
It's general ignorance in general really. I told someone the other day that dd had Aspergers and this bloke (who had never net her) was like "oh they always get it wrong, she's probably just got a touch of dyslexia" FFS AAAAAAAAAGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH

[needmorecoffee]

too right. If I hear about the guy on 'my left foot' once more I'll scream. DD's CP is worse than his. Lucky bastard, he could move a foot and speak.

[2shoes]

misdee I was thinking more along the lines of......oh yes I know someone who has cp and they can walk and are at work

[Peachy]

Its the Einstein one that gets me every time

I like to point out DS3 is well apst 3 now (well, 18 months past) adn get told thats not the point

I know it effing isn't! The point is einstein developed full langauge, and ds3 won't.

Idiots.

[silverfrog]

Oh the lumping together all in one box really bugs me too, especially by professionals.

We have just been told that dd1 won't be getting SALT any time soon, as she has improved beyond "the criteria for pre-school ASD SALT". So she (apparently - we will be fighting this all the way) now won't get any until she is 5, as that is the next "box" to shove her into. 'Tis great - dd1 can talk more than a non-verbal ASD pre-schooler, so they can't be bothered to help her achieve the next step.

[sphil]

Yes, we get this too. DS2 is severely autistic but doesn't respond badly to change at all - in fact he's very flexible and adaptable. Yet in every report ever written about him (except by our ABA programme supervisors) it says something like 'DS2 will need help to manage change'. It's a small thing, but it pisses me off. God knows there are lots of other things he needs help with, but it's as if they think 'Ah, autistic - so must hate change'.