Do I push for an official diagnosis?

[NicLin1978]

My DD has an unofficial diagnosis of autism and an undiagnosed genetic disorder.
She gets DLA but I know quite a few people who have had theirs revoked because they've got no official diagnosis or their children have been deemed not disabled enough.

With the way the system is I'm worried that her DLA will go the same way.

So do I push for the autism to be official in the hope that this wont happen to us?
We really do depend on it to get out and about and make sure she has everything she needs.

Any advice would be great

Get an official dx - but not just because of DLA. Because it will help (a bit) in general in life, and particularly with school.

My answer would be YES.

DS got his official DX today of ASD.

As far as DLA goes I'm not sure there are any guarantees at the moment and I can totally sympathise as I survive on mine that I receive for DS too. We would be existing in poverty without it.

I think an official dx has more positives than negatives so I would always say to push for one. Be prepared to push really hard and wait a long while though. I asked for one in spring 2008 and got one today!

(sorry for hijack op, indigo, my other thread got deleted as I stupidly put DS's name in it thanks for your kind words)

I would definately go for it as it will open more doors and should get you more support long term.

Hi there, just to say that whilst your DD will be your same wonderful DD with or without a diagnosis, it is sometimes easier if you have a diagnosis both for the paperwork and perhaps for finding information and support groups.

Having said that, genetics testing and the like is moving so fast, even if you do get a diagnosis you may find that it doesn't actually mean anything.

My lo has a microdeletion but nobody knows what the missing bit of the chromosome does! As such it's just a case of going forward day to day and dealing with whatever issues arise.

I would definitely persevere though, although it could take a considerable amount of time and can be frustrating.

Thanks everyone.

Its not just the DLA I'm worried about, though it is a big concern. She knows she is different from other kids but doesnt understand why and we dont want to tell her about the autism incase they decided its not that.

Its a hard decision to make and I dont want to come off like a neurotic mum, who's jumping on any kind of diagnosis to explain how she is, to the professionals involved. The professionals involved dont want it official because they dont want her to be labeled as just autistic and for her undiagnosed problems, like the genetic side, to be ignored. I dont want her other problems ignored either but dont see why she cant be diagnosed as autistic while we are investigating her other problems

Her school is brilliant and recognises the autism and her curriculum has been adjusted accordingly. She does go to a special school.

But I do feel that there's a lot of help & support she's missing out on outside of school because of no official diagnosis.

I have a very big meeting next wk with everyone who is involved with her and will be asking for the testing. I dont doubt for 1 minute that I'll have resistance from quite a few people.

Any suggestions on how to deal with them?