WWYD? Problems getting diagnosis for ds

[TheCrunchyside]

background

I came to this board 18 months ago just after we had received dx of Global developmental delays for ds who was then nearly 3 and a half.

He want to a SALT nursery and there they raised the prospect of him having ASD. I didn't agree at first as he didn't fit the stereotypes nor my initial understanding after reading up. But I agreed to suggestion to get myself on a Early bird course partly to show willing.

On the (excellent) course I realised that ds could well have asd as well as learning delays and SPD/dyspraxia and would come under the "socially active but odd" category.

As he gets older the sensory and behavioural problems have become more apparent and challenging.

Ds is now nearly 5 and is at mainstream school with statement - going ok i think. .

My problem is that I want him to have an assessment so I can get asd confirmed and kknow where he is on the spectrum.

in my area assesment is through the social communication clinic and ds has been on waiting list for a year now. We complained and received a letter stating that

"it will be some considerable length of time before he is seen.

to go to my gp for referral to another diagnostic service such as Guys Hospital [other side of London ffs]which may have a shorter waiting list

ds will be supported at school without needing a dx.

I've got a call into my GP but am fuming that they have basically given up on dx ASD in my area. Also angry that they tell me after a year of standing in their queue that I should bugger off and stand in another one.

but perhaps they're right getting a dx is not worthwhile - his statement seems ok - includes SALT, 1 hour/week specialist OT input/social skills group and one to one for much of the day.

Views welcome as considering whether we should pay but money is an issue for us.

Hi Crunchyside

My gut feeling is to continue to progress with a dx through another diagnostic service if possible, or by re-visiting your options with your not very helpful GP.

Although your ds is statemented (which is great in terms of support in school) I am probably thinking more around the transition that he will have from little - big school and so on (being a teenager, etc). For me, it would just give you that added bit of security, particulary if other services are needed or any crises present.

Thanks HM.

didn't make it clear that the letter is from the disabled childrens team at LA rather than GP (GP is alright).

We still haven't applied for dla - do you know if having dx makes a difference?

Hi Crunchy,

My personal wish would to be get a dx if I think it is likely to give me and others some signposts for the difficulties and subsequent support.

In terms of being told where he is on the spectrum, disappointing as it is, most won't tell you. This is because children can move around as the develop and expectations can affect (and even in some cases lead to) prognosis.

It is also fairly unhelpful to be given a static 'place' on the spectrum as a dx of HFA doesn't mean independent living any more than a LFA means not so iyswim.

And independent living means different things to different people. Amber for example (hope you don't mind Amber is arguably independent and self-sufficient in that she has figured out what she can't do, and surrounded herself with people that can do it for her. Is that independent or dependent and does it even matter?

I cannot without reliance on anyone else provide clean water for my family, or clothes etc.

Overall, I'd get a dx so that I have the best picture I can get of my child though. You need to think about the difference a dx will make to your life and your ds'.

Ok will go on trying to get dx but how best to go about it?

My options seem to be one or more of the below:

Stay on poxy local authority/pct waiting list

Get GP to try and find me another list to wait in

Pay (but who and how much would it cost?)

Fight LA/PCT (not sure which this team falls under)- are there any guideline stating how long wait lists should be? any precedents for getting PCT/LA to pay for private dx if their waiting lists are so long?

sorry - didn't mean to sound so grumpy in previous post

If I were you I'd stay in the system and get the dx.. As said already it maybe useful later on and if you decide you need one later on you'll be starting again on the lists.

Thanks Arsenic -they would love me to leave their list! have to do school run now. will be back later.

"We still haven't applied for dla - do you know if having dx makes a difference?"

You don't need a dx to get DLA - it usually helps, but you do have a dx of GDD anyway plus a statement so you should have plenty of evidence.

I definitely think it's worth staying in the system and trying to get a dx, if only to plan ahead for future provision. I don't think it's urgent enough to need to go private though, since you have a lot of provision in place. Have you tried ringing the clinic itself and making it clear that you're available for cancellations, checking where you are on the list etc. It takes a bit of front but I know others have been successful doing that.

Thanks sugarcandy - there is apparently no available number for this clinic - think they have been beseiged by angry parents!