Formal diagnosis. In what form are they given?

[mysonben]

I'm confused (again)
We've had verbal dx of mild asd for DS from paed, then several reports stating : problems:-speech and language delay
-concerns about social skills
-obsessive and ritualistic behaviours
Then each area is commented on. And in the conclusion it says DS should be refered for autistic assesments.
Finally a letter (after paed discussed ds's file at monthly City Autism Liaison Meeting) that says : it was agreed that B presents with some autistic features....

Now we are waiting to be seen by Cahms for asd dx assessments.
These above do are not what would be considered a written dx would they?
What is considered a formal dx? Does it come in a letter or a full report stating clearly 'x or y has autism or asperger syndrome' ???

Could someone shed some light on that for me please.
Thanks.

Yes, a formal dx would be explicit and can only be given by certain individuals - not a community paediatrician, a SALT or OT.

The references to 'traits' means just that - traits have been noted but further investigation is pending. Equally, listing ritualistic behaviours etc explains why further exploration of the issues are required.

I was told by the head of the ASD team that they undertake their diagnostic tests (which have not been done if you are waiting for a CAMHS assessment) and then have a multi-disciplinary meeting on the outcomes. A formal dx may be suggested or it may not. The parents are then spoken to about it.

It would not be dropped in a letter through the post - or should not be. References to 'traits' are suggestive and not a diagnosis. This accords with the National Autism Plan.

A Community Paed could dx. Some in out area are registered with the NAs as having a special interest in ASD.

The dx's my DS has recived have been stated in letters from his Consulatnt to his GP, or written in assessment reports or, for the private dx, a report that actually stated "the patient displays all the signs of aspergers and that is my diagnosis".

But I don't think you should get hung up on the "formal2 part of a dx. as long as one medic has written in a letter / report that he has ASD, or his probles stem, from ASd etc without being as explicit as the private report I mnetioned - so still have a written dx.

If the letter says his behaviour etc is suggestive (or similar words) of ASD, then you have a working dx rather than a formal dx.

Hope this helps

Ok thanks for clarification Debs. As we are to be seen by cahms it is good info.
So if i get that right once cahms have done all their tests and observations , they call the parents in for a meeting where they talk of their findings and tell you if child should be given a dx or not and what the dx will be? Yes?
Then i expect a letter or a report must follow.

Thanks wetaugust.
Yes we have reports commenting in details that DS has problems within the triad, and one says we have been told about autistic disorders.
But of course there are nothing in there that says clearly in black and white 'B has autism'.
So these reports are good for what? Can i use them for anything?
Paed told us to make sure we take them to cahms including the result of gars.
The only thing we have that says anything a bit more specificaly is the resume about the gars test Bibic did. But then Bibic don't do dx so...

Also, yes DS 's paed is a community paed but she runs an asd clinic she said. What does that mean?
I wish i had asked more questions at the time.

It appears that your Comm Paed mysonben would then be competenet to make a ASD dx as she runs an ASD clinic.

You can use the reports for purposes such as a DLA claim, show to school etc.

You're supposed to get a copy of all letters the Consulatnt writes to the GP that made the referral. The dx itself will not be explicitly stated as in "I have formally dx'd Ben with ASD".

It's more likely to be between the lines as in "Ben's difficulties stem from his ASD".

IYSWIM.

But until the dx is actually made i.e. 'formal' you're more likley to see "be's difficulties suggest an ASD" or "His displays traits" which should really only be considered as working dxs in that case until they firm up on there findings and formally dx.

But like I said - don't get hung up on it - it's the behaviours not the label that school etc should support.

Best wishes

J had 2 things. One was the ADOS report, stating his scores in communication, interaction and overall; that was combined with the questionnaire 'results' and both bits said 'these results show severe difficulties in all areas' and the words 'dignosis: autism' were written and also 'J meets diagnostic criteria for autism'.

Also, the letters about J to everyone involved with J always say 'diagnosis: autism and ADHD' at the top.

Ok, thank you all for replies.
Yes paed's reports have all been given to nursery, well school got one, we got one, salt got one, and gp got one apparently.
So i suppose the reports have helped in a way as it was the first report that prompted nursery to call in area senco.

Wetaugust, it was dropped casually in conversation during our second appoitment with paed , that she runs an asd clinic and that we had been refered to her specifically by gp because of the nature of the concerns regarding ds' problems. In other words i think she was trying to say that she had experience with asd children.

we had a multi disciplinary meeting where paed, SALT and clin psych met us and presented their conclusions (there was supposed to be someone from education there but as it was only 3 weeks before summer holidays they were too busy packing their suitcase). They confirmed DS had autism and then after the meeting the paed wrote to our GP summarising the findings of each professional and sent us a copy and that was our "formal" diagnosis. However we know people who have gone to that meeting and not everyone has agreed and who have left with 2 out of the 3 saying ASD and one saying not sure so they still don't end up with a definitive diagnosis because they all had to have agreed. We also got individual reports from the clin psych and SALT based on their observations sent to us after the meeting.

snap! grumpyoldeeyore, we had a multi disciplnary meeting, it lasted about an hour and we were asked to leave for half an hour, when we came back we were told dd has autism. about 3 weeks later we recieved a report in the post stating in writing that dd has autism.

Depends I think.

The NHS operates entirely on letters, which I think is a hangover from like the 1800s or something. The GP writes a letter to make a referral, and the consultant writes back to report to the GP the results of the referral. So if the GP says "does this child have ASD?" then the consultant should at some point write back saying "this child does/does not have ASD".

These letters form the bulk of your medical notes and are often, in effect, minutes of appointments. So your diagnosis in the sense of your proof of condition would be in a letter from the consultant to the referring doctor. However, if the diagnosis is a milestone event, you would expect them to tell you about that first in an appointment and the letter just be confirmation of what you discussed. But not always. DD1's diagnoses are generally listed at the top of every letter from her main consultant and change slightly every time depending on how much of it he remembers. She "acquired" an ASD diagnosis that way at one point, just suddenly appeared on the list. And we spent months pushing for an Epilepsy diagnosis (and not getting one, everyone was buck passing because she is complex/unusual) and at one point we were inpatient on a new Neuro ward and the rather formidable neurologist said "but you must realise she has severe Epilepsy?" in a sort of "stupid parents, always in denial" way. . And again "Epilepsy" just appeared on her letters from then on without us ever getting what I would call a Diagnosis.

So sometimes the system slips a bit. Seems to work fine for the doctors though.

Sorry - meant to say, in theory you should always be copied on every one of these internal letters. There's often a form you sign on that basis when you first get into the system. But the protocol is the letter isn't generally to you, it's to your GP. Though you will pore over it for hours and your GP probably won't even read it.

r3d, i've never requested dd2's medical notes as they are too long lol, (solicitor has copy of birth notes ) but i've often wondered at what point it was freely noted on official medical records that she had cp... it was certainly an awful lot earlier than we were 'told', and then only because i actually asked lol. in the end i got very impatient and just asked the consultant for a dx. it had been obvious with the therapists for some time that everyone was working from a cp basis lol.

when i saw the slt the following week, and told her that we had finally got a dx, she just said, 'oh, at last! it's so difficult, because we aren't able to diagnose, and we have to wait for him even when it's obvious. we aren't allowed to mention anything specific prior to that.'