Do you have to accept a diagnosis?

[iamnotahorse]

After many years of pushing for a dx we may be close to one now but I'm stressed. What if we don't agree?

You can ask for a scon opinion if your DC doesn't have what you think he/she does.

A DX is a scary thing, try take a few days to digest hat you're being told before making any decisions. Plus posting on here is very helpful.

What do you think the DX will be?

A.S. has been suggested previously but can't help fretting that they think we're just bad parents. He has become quite aggressive over the last few months - is that usual?

thanks - just feeling scared and a bit down really.

'yes of course. If you were struggling to be understood, were treated as naughty or rude when you genuinely don't understand the social rules or what you have done wrong and are then punished for it, we'll you'd probably get quite aggressive.'

Something has just clicked for me! Thanks tribunalgoer.

iamnotahorse, it feels aweful, I am only just starting to get a diagnoses asthe system of my LOA is to try what seems like a million strategies before a CAF, and the child mental health service will only get involved after the CAF review, but you're getting there...slowly, it's horrible and frustrating but try to think positive

Obviously doctors are variable, but from what I've heard I think most are sensitive to this sort of issue. And though I've no experience of AS, any diagnosis is only provisional and can be countered by later evidence. So if you're really uncomfortable with it, you can ask for a review in eg 6 months, or you can discuss what sort of things would confirm or contradict the diagnosis and what the plan would be if later evidence came up. But it's very very common to fight hard for a diagnosis and then when it comes go through a grief process. So if you're feeling uncertain it doesn't follow you are doing the wrong thing. Cut yourself some slack and take support where you can get it.

Fwiw, DD1 had diagnosis A and provisional diagnosis B for about a year. Neither went anywhere near explaining the symptoms and there's probably a lot on her medical records at that period about me being an arsey cow and causing lots of bother. I had to fight for various assessments; got them though in the end the clincher was developing a new set of symptoms which proved something else was going on. We ended up with diagnosis C which makes the others seem trivial. So to go back to the question, no diagnosis is set in stone, particularly if you don't agree with it.

This is somethingw e've coverd at Uni; the general consensus is no you don't have to accept a DX as parents and your feedback should be saught (and it is here, you get a devrief meeting 3 months later) but you can't stop the proferssionals accepting teh dx either.

As for the aggression- as poster said not uncommon at all with AS for teh reasons given- chuck in end of term and a great many NT kids are struggling, let alone routine based ASD ones!

Hello iamnotahorse

We have a 6 yo DS who was DXed with ASD just over a year ago, and we initially asked for a second opinion as the DX did not seem to 'fit' DS in so many ways. Paed subsequently explained to us that in her view an ASD DX is 'negotiable' i.e. to be agreed with parents depending on whether it is felt the label will be of benefit.

So no, in theory you don't 'have' to accept it, but I guess what you need to be clear on in your mind is (a) what does your child need and (b) is the DX going to help or not.

With DS in the end we opted to leave the DX as is (he definitely has some issues, particularly at school, so in many ways his DX is a protection for him) but we have an annual review in place and his review notes state something along the lines of 'for the moment he meets the criteria for DX but as he grows up may develop coping strategies and cease to meet criteria'. In a nutshell, I guess that means that at some point in the future the DX may be removed (depending of course on how DS gets on).

The whole DX process is horribly stressful and I'm not surprised you feel scared and down, I think most people do at some point during the process. Really hope that ultimately you get the outcome you feel to be best for you and your DS.

We've grudgingly accepted one. In our case it didn't enable ds to access services, it hasn't help us understand him any better & it won't be needed educationally (home educated). It did lead to a complete crisis in my confidence to parent him & continual low expectations from pretty much every professional we've come into contact with. I can say with 100% certainty that having a diagnosis has not benefited him in any way EXCEPT the paed who said it was necessary to get DLA (not true) & we rely on DLA to part fund his home therapies (which we started way before diagnosis & for his language delay - diagnosis wasn't relevant).

We'll be re-examining the whole situation when his DLA expires in 2014 - paed did make a note on the diagnosis along the lines of very young/uncertain development etc etc etc. I might feel differently if the diagnositic process had been more thorough but frankly it was a complete joke

I think when considering this you ahve to be aware of whre you live.

In our city they are establishing an adult services team for people with ASD; now before you all get excited (!) remember that is becuase up to now people with ASD have been excluded from any services unless they have very severe LD and there have been some sad cases locally of people being found as hermits after many years alone in a flat due to living with ASD / AS, including one man who made his first friend at 60 after being moved to a retirement home when he lost his job (redundancy), couldn't adjust to lack of routine and went on a huge gambling / high life bender that eventually lost him everything.

So all it is really is an admission that for the last X years they have completely fucked up.

But without the DX or a dx of LD someone who is as vulnerable as my ds3 and simply could not live alone would fall outside the SSD provision; in that case a dx is a necessary target to aim for.

Thanks everybody. If I'm being honest I'm worried that they'll say that he hasn't got AS at all and that we are bad parents who have caused his difficulties. Not that I want him to have AS either.