ASD diagnosis - are they having a laugh?

[MoonlightMcKenzie]

DS's CDAC is coming up. I have asked loads of times what the name of the assessment tool they will use is.

No-one will tell me.

Finally I get this from my keyworker:

're: the name of the diagnostic proforma tool. This is not my remit- If you wish to discuss this with the Paediatrician following the diagnostic assessment , an appointment can be made for this'

So I am expected to make an appointment so that the Paed can say one word?

Oh don't! The whole thing is a joke ...but not funny!
It's nothing but red tape, waiting lists, tramping on the spot, non-communication of info, ... Argghhhh!!!!!!!!

Well maybe what she is saying is that you are clearly asking for a reason. Which is presumably because you want to make sure they are using what you feel is the "right" one and so you can understand the results. And that's probably a common concern and one people usually cover by discussion with the paed and that's a long enough discussion to need an appointment. This is the downside of being on the ball - trip people up enough times and they start second-guessing what each question means and answering the question you should have asked.

Is it possible, btw, that there isn't certainty which test they will use till you turn up and they have a look at him? I've just been sent a bunch of questionnaires for an ADHD diagnosis and half of them are clearly for differential diagnosis with other conditions (AS, OCD, mental health issues etc) and possibly the set they send is based on the output from the screening questionnaire.

I suspect that r3dh3d is right. It all sounds very defensive

Sure r3d why don't they just say it depends on the day, but the types of tools we use are x, y and z although there are others used as seen fit by the Paed.

It isn't an answer, but it comes across better.

lol at trying to make sure they use the 'right' one. ha ha. I reckon this could be it. The expert patient and all that.

'I saw on t'internet that you should be doing an assessment for his suitability for crystal healing - are you stupid or sommat'?

Ah yes- my APed expressed concerns when i told her I was applying for an MA in ASD LOL (she is actually really great usually but she didn't ike that)

Where you doin it Beth? Since my whole world atm is asd, after the tribunal I think I might like to have a go. No teaching background though so have to choose the course carefully.

I'm just over the Severn Bridge Moonlight, outside Newport. Several places running it though.

I ahve a non teaching background also but my last career pre- DX was with a childrens charity so very related inm a different way0 part of my job was organising for BIBIC and others to do training on ASpergers etc; then I noticed a few similarities and everything changed

I'm supposed to be just starting antenatal teacher training. Think I need to still do that because it will be a rest from ASD.

DS will still be disabled when I finish so I reckon I can wait before doing a MA!

Good luck with your course.

ime, the test used depends a lot on which paed you have administering it.

have you a had a confirmation on which paed will be attending?

we had a marvellous appt when dd1 was undergoing dx, where dh took the day off work and we all trooped off to the children's centre. we packed a lunch for dd1 (not easy as she is gf/cf, and doesn't eat sandwiches! we were new to gf too, so quite a PITA tbh)

we were then kept waiting for over an hour. I do understand that appts overrun, but we lived 5 mins form the centre. you'd think that someone would have let us know of the delay. dd1 was about 2 at the time, so didn't like waiting in the best of circumstances, never mind ASD issues!

we finally got into the appt to be faced with a list of developmental questions. when dh queried why they were being asked again (3rd paed appt, had always seen a different paed)) we were told that that was thepoint of the appt.

we were and said so. and asked why no assessment was being done. the answer? the paed was not qualified to administer.

we walked out and asked to be re-scheduled with a qualified paed, as we already knew there was an issue, and now needed some (any!) tests.

so maybe they can't answer your question, as the answer will very much be based on who is attending?

'tis crappy service though.

obviously none of them want to say the name incase you they get the diagnosis wrong and upset you
red tape and labels are pretty useless
my sons diagnosis has not helped him at all
except to get a couple of letters to apply for funding for biomed and therapy's

Don't worry too much just go in with an open mind normally these assessments take a few months i.e. more than one visit.
you could do some resrearch on your child's symptons there are some places
if you are interested in asd
look up recoveredfromautism.com they hav e a list of things to look out for and she did recover her child as well.

Do look at recovered from autism.com, you should look at what you can, but be aware it is very controversial and a lot of professionals would argue that if youn recover, it is not ASD. However, there is no question that some children with asd make massive improvements.

I hope I put that in as non-confrontational a manner as I can-m it's always worth knwoing both sides IMVHO

It's the same paed who referred him. She referred him to......herself!

She's been very helpful though so don't want to antagonise. She got us higher rate DLA when we were expecting to be arguing from lower to middle.

maybe they think if they tell you which assessment you will coach your ds on the main parts of it?

I have yet to come across any, but there are apparently parents who are in total denial over their dc's issues...

if I'd known what assessment (and was of the mind to) I could have easily coached dd1 to "pass" bits of it, and maybe appear more borderline than she is. she has good social interaction as it is, and with a little coaching on what to do with a doll, cups of tea etc, she would have been doing rudimentary imaginative play, especially since she was a young diagnosis...

Mind you, i was pushing the opposite way, tbh, and overriding their "well, let's wait and see" comments, but apparently denying any issue can be quite common...

Oh God yes, and on the opposite side the 'they will fake it for DLA brigade'.

Never have I met such people! My friends son is clearly autistic- yet the LEA accused her of just wanting to get hiome a place in an SNU for her own reasons- WTF? (esp. as primary couldnt cope with him ms)

they'rea paranoid android bunch at timesthough I must admit I can fake a psychometric test well (after doing some Psych degree), and do constantly self doubr whether I have accidentally fixed it (now solved by sending DH instead LOL)

pmsl at them thinking I'm trying to bias the test. I already have a private diagnosis that I sent them

SS told us that some people pretend their dcs have disabilities to get respite

The problem is that some parents do self-dx their children and this can often be very damaging. I see it at work at lot
"well of course he can't do any homework - he has ADHD".
"Oh, I wasn't aware of that. It's not on his file. Was it a recent diagnosis?"
"I don't need any doctor to tell me about my own son. I just know he has it, all right? He's not doing any bloody homework."

and "Mum says I can't do any group work because I've got autism" again, just a parent deciding to tell their child about a label they'd decided to apply to them without any evidence of even consulting anyone at all about it, not even a GP!

Not good.

Well if any bias is gonna happen, it is because they insisted on seeing the private report before the diagnostic clinic. They weren't even going to diagnos because we already had a private one, - but the private one was only clarification of the referral.

Therefore our diagnosis journey would have been:

Comm Paed: Here is a comprehensive report but I can't diagnose right now. I'll refer you to myself and a SALT in a year where we will do more than ask you questions and actually assess ds too.

Private Paed: The Comm Paed was very comprehensive. Tis clear he has autism, therefore give me £700 and I'll write it down.

Comm Paed: I don't dispute the diagnosis for the Private Paed, so there is no need for us to go ahead with the assessment.

But then I insisted because nobody has actually done anything with ds. However, no-one will tell me WHAT they are doing with ds, or what questionnaire they are using with us. D'ya see why I might want to know what is going on?

I suppose giveme that it is probably sensible to stop parents reading up on the questions to 'ensure' they answer in a way for them to get their desired outcome, - assuming the testing process of the assessment tool takes account of the fact that some questions will be hard to answer without a lot of thinking.