uncomfortable about DS being prioritised for ASD diagnosis

[JumpingJellybeanz]

Would you feel uncomfortable about this?

DS has a provisional diagnosis and has been referred for formal diagnosis. The current waiting list time is 4-5 years. My HV said that DS will be called in within a few weeks because he is classed as higher priority. The reason being that there are already 2 people diagnosed in his immediate family (me and DD).

On the one hand I'm pleased we're not going to have to wait for confirmation of what we already know. On the other hand, I don't think his need for diagnosis is greater than any other child on the list. If anything it's much less. I feel so uncomfortable talking to other parents who are struggling and desperately need that diagnosis, knowing my child is jumping over them in the queue.

I'm being daft aren't I?

Yes your being daft! But lovely kind and daft!

It's likely that asnyoi have a working diagnosis and with family history he's following a differential diagnosis route to those where the case isn't as clear cut and they need investigations etc from salt etc.

I think your being silly sorry. I know what it's like as my dd was priorities due to starting school (she needed 1-2-1) which the school told me they wouldn't get funded for unless she was diagnosed so it was sped up. However waiting times here are only 8-9 months (I'm in south london)

The real problem, of course, is that as a nation we spend way below the western world average for health, and this is one of the services that gets squeezed. So they are trying to prioritise (probably via a few different red/amber flags) the kids most likely to have the diagnosis confirmed, to provide the most help they can with limited resources.

Take them up on the offer. Then make sure you never vote for the bloody Tories who are dismantling these vital services.

With a 4-5 year waiting (crikey, I thought a year was a long wait!) you should just accept the offer and not give it any more thought. If your son is a clear cut case, with no wait and see needs, then they might as well crack on.

4-5 years? Bloody hell that's awful.

Hopefully families who are really struggling would also be prioritised.

Sorry I forgot to say that I'm not in the UK.

I think you're right about there being a different diagnosis path. At the appointment where the referral was done I think the doctor asked the HV why he hadn't been offered assessment at 2 and then started talking about me and DD.

Yes.

It
took around 4-5 years for DS to get his provisional diagnosis. It was only when we had a professional involved who knew what they were talking about who understood it in depth did we actually get anywhere.

At the appointment where the referral was done I think the doctor asked the HV why he hadn't been offered assessment at 2 and then started talking about me and DD.

I was asked this. (UK). The reason DS wasn't offered an assessment at 2 was because the HV told me his behaviours which were concerning me were just 'the terrible twos stage'.

Four to five years is ridiculous. However, as for being guilty forget it. The professionals have decided he is high priority so that should be enough for you.

Yes you are being silly. This is about YOUR child not anyone else's because at the end of the day it's going to be on YOU who your DC will fall back on.

Hi JumpingJellyBeanz

This is my first post ever.

If you're priority then it is for good reason...however I wanted to cry at the idea of waiting that long for a diagnosis. We're awaiting a first appointment for our youngest (already been months of waiting to hear if we're even on a list) and the idea of him suffering that long because no diagnosis really breaks my heart. We had a tough day out on Thursday and on bad days it seems so clear.

If you get an appointment take it....you don't control the system.

Your concern for others is laudable, but it's good that your DS will be seen sooner.

4-5 YEARS! Madness!

It took about 4 years for us (uk) from initial appointment voicing concerns to diagnosis.
I think it is because so many different proffesionals are involved. Each proffesional needs to run their own tests, write reports then refer to the next.
It is very hard to get a diagnosis.
many people don't understand this and think parents often cry asd or ADHD and use it as an excuse for bad behaviour.
I am a foster carer and my child was given priority but it still took this long.
When diagnosed school had to put a lot of support in and behaviours are treated as disability not just being bad.
Sensory issues are dealt with and understood.