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Global development disorder and significant social communication difficulties

6 replies

elliejjtiny · 09/12/2019 21:30

This is my 5 year old's diagnosis at the moment. We are waiting for an autism assessment but that won't be for a year. Does this mean that if he is diagnosed with autism it will be the non aspergers kind of autism, (sorry I don't know the current pc term for it). Does this mean we can go to the autism support group? They have said we can't without an autism diagnosis but I'm wondering if this is enough. I've felt like we've been in limbo for so long. I first raised concerns when he was a few months old and he began assessments when he was 2 so it's taken a long time to get to this point and still no support. We have at least got middle rate care dla awarded this week so that's something.

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Absoluteunit · 10/12/2019 07:40

My daughter's consultant told us that it can't be Asperger's if they have speech delay. In any event in our area everything is ASD and they don't diagnose asperger's anymore.

I would absolutely go to the support group. I didn't until diagnosis and wish I had - there were lots of families there who weren't diagnosed yet.

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openupmyeagereyes · 10/12/2019 08:48

I don’t think speech delay is the same thing as social communication difficulties.

My ds did not have speech delay but he did, and still does though he improves all the time, have social communication difficulties. He was always verbal (though not as advanced as typical children) but didn’t start ask questions until he was around 3.5 and he had a lot of echolalia when he was younger, that sort of thing.

OP, it’s odd that he’s been diagnosed with GDD but is on the path for an autism assessment. I presume he was dx by a paed? If he has all the criteria than why didn’t they dx asd? If he doesn’t then why the asd pathway?

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openupmyeagereyes · 10/12/2019 09:00

Sorry, I’m probably being very naive. It just all sounds like a massive duplication of effort.

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elliejjtiny · 11/12/2019 11:43

Thankyou. He does have speech delay. He is verbal but doesn't have a conversation. He's just started asking "why" constantly but isn't interested in the answers.

He was diagnosed with GDD by a paed. He was under the neonatal team from birth and then transferred to the community paeds when he was nearly 3. Since then he has seen 2 different locum consultants and a registrar. Neonatal paediatrician thought he had severe sight problems initially because he wouldn't respond to people, smile or make any kind of eye contact at all as a baby. 1st locum and registrar said he showed symptoms of asd but too early to tell. 2nd locum diagnosed him with GDD and significant social communication difficulties. He said he didn't think ds has asd but referred him for autism assessment anyway. I'm not sure why, maybe to rule it out as we have family history of asd and school have said they think he has asd.

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openupmyeagereyes · 11/12/2019 19:35

Gosh, you’ve really been round the houses haven’t you?

It must be so frustrating. We went straight to the CDC and diagnosis which does not seem to be the norm on these boards. Ds is possibly a more clear cut case.

My ds has only really started using why regularly in the last few months and he’s almost six.

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Equanimitas · 12/12/2019 12:25

Does he have an EHC Plan? It sounds as if you have a cast-iron case.

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