Ds1(7) , AS (ish), given diagnosis. Then diagnosis is basically, withdrawn.

[Oblomov]

Ds1, bright, minor issues, assessed twice by a Paed and a Clinical Pychologist. Both said Theory of mind = severe. And empathy = severe. But when doing AS teat, not enough boxes ticked to give diagnosis.no surprsie, because even I wasn't sure.

So CAMHS does DISCO assessment.
She says in her ASD Assessemnt report :

"DISCO, fullfils diagnosis of childhood autism.
But school , and our vist (they visited and watched him for 15 mins in classroom, then 15 minutes in playground, and he played very nicely, with 2 of his friends), = at odds with this finding. so now I must speak to dh"

"Mum can't rememeber some development questions. so maybe stress ? maybe mum had attachement problem, due to her health, plus child is rigid, so this could explain it."

I'm like, "you what".
You do the test, he gets enough to warrant diagnosis. But school disagree. Then our own 30 minute observation, makes our question this.

So now we are basically questioning mums judgemment. maybe it is actually
attachment and bad parenting after all.

Dh has made an appointment to see her.

I had a sob. No one beleives me. Its not as though I would make it all up.

Saw NHS Paed. He said very bad t-o-mind and very bad empathy, but there is nothing I can do for you. I was not happy. So saw different Paed privately. He thought maybe ODD. But refered us privatley to clinical pyschologist, who suggested AS. I wasn't sure.
She did ADOS, with me and dh. Very quick, we did in one short session, maybe an hour. It seemed very basic to me, and not that in depth. I think there were maybe 40 questions.Then she met ds, for 30 minutes. And told us he didn't tick enough boxes, for an AS diagnosis.
I couldn't afford to keep seeing her. So asked went back to NHS Paed, and asked for referal to CAMHS, which he did.
CAMHS, I met, discussed, and met twice more, doing the DISCO assessment in 2 sessions, both lasting over 2 hours. Seemed very detailed to me. I managed to give her every issue, every event that I thought was important.
I just posted that, in response to other posts and Miss Greens, re pushing for an ADOS test.

And Niecie, I do know that AS gets worse, and is not often diagnosed in young children, but more apparent as they get older.
And yiou are very right, schools refual to see anyhting wrong at all, is a major concern, that many MN'ers have told me I need to consider. And I do know that.

Hi Oblomov
If it helps, one of my son's 3 diagnoses is "features of a nonverbal learning disability" and the tests the EP used to determine this were called DAS II (Differential Ability Scales) described as "an assessment battery that includes tests of cognitive abilities and memory. The Cognitive Battery of the DAS is organised into a set of Core subtests that yield a General Conceptual Ability (GCA) score as well as Verbal, Nonverbal Reasoning and Spatial cluster scores." My son did very poorly on the nonverbal reasoning tests, and it was explained to us that poor scores on these tests usually reflect a child who has trouble "getting the jist" reading non verbal signals etc

Thank you Lynn.
CAMHS doctor commented that she thought that ds was 'particularly bright' and asked if we had had an IQ test done. What I should have said was asked when she was going to arrange that !!

Other tertiary centres are Elizabeth Newsam in Notts and Lorna wing Centre - details on NAS website

Thanks Agnes.
What am I supposed to say to CAMHS then ?
I have to wait to see what she comes up with post dh meeting.
And then what ?

no, no Thesis, its quite allright.
But I have to query this myself. I am pushing and pushing and requesting and requesting, and not getting anywhere.
I thought it was me. Not parenting properly. Or atleast , the usual parenting techniques not working on HIM.
So I went to more parenting classes.
And then I had a word with senco. And she good god, get him to a child pyschologist. So I went to my Gp. And thats how the whole process started.
But maybe senco was just saying that, becasue it wasn't a problem to HER at that stage. There were no significant problems at school as such.

But I do have to question myself.
Is there really something wrong with him. Is he really SN.
becasue so far, everyone is telling me no. And You have to accept eventually, don't you?
I was never sure what it was. And I always thought that if it was anyhting at all , it was minor.

But now my head is just spinning. all the time.

Oblomov

I was having a scan through my PubMed Autism collection of research papers and came across
Identification and Evaluation of Children With Autism Spectrum Disorders 2007
and this includes two tables of issues regarding the diagnosis of Autism and Aspergers
Diagnostic Criteria for 299.00: AD (autism)
Diagnostic Criteria for 299.80: Asperger's Disorder (Referred to as AS in This Report)

I hope that this may help explain things

Thanks Dolfrog. I have printed them off and am trying to work out how many of them he 'really' qualifies for. some are so definte its untrue, but I am not sure that he is, some of them. And I don't think he ticks enough of them, strongly, to be able to be sure.

Dh has just called. He finished with CAMHS. He was in for 3 hrs.
CAMHS are prepared to give a diagnosis. I said atleast I'm believed now. He said that CAMHS always beleived me, but that school were so insistant, she had to investiagte , to do her job properly.
Fair enough, I suppose.
But wait for this.
She asked dh to ask me what I wanted.
Did I want Autism or Aspergers. "It was up to me to choose."

WHAT ?
First of all, how ridiculous is that.
And secondly, how am I supposed to choose ?
Is one worse/better than the other ?

Great that you got a dx.

Aspergers is an Autistic Spectrum Disorder, so they're the same diagnosis....

It doesn't really matter what your formal dx is - almost nobody ever will read the report.

I know that Moosemama got a ASD/AS DX so she can use either or depending on the situation.

Well done for keeping at it BTW. Mum is always right

Oblomov, that must be a huge relief. Well done for sticking at it.

The reason she asked you what you would prefer as a dx is that Aspergers is an Autism Spectrum Disorder, but in some cases, not always taken as seriously as it should be, as the common perception is that its mild and therefore not a problem.

I specifically asked for them to amend my ds's dx to include both ASD/Aspergers, because I had heard of cases where people had not met the criteria for support etc with an Aspergers dx, whereas an ASD dx would have qualified. This shouldn't happen, but in some cases it does.

It will all become academic soon anyway, as they are getting rid of the seperate AS dx and everything will just become Austism Spectrum Disorder. The clinical psych that did ds's ADOS said that that won't be for a year or so though and that's why I chose to amend the dx on the report.

Oh, almost forgot, at the time I think I was also thinking that when he's older ds may prefer to tell people he has Asperger's rather than Autism and I wanted to be able to give him the choice.

Was my thoughts exactly Moose.
I think I will ask her for both.

She just rang. She said she wouldn't do both. She thought having both made it complicated and too confusing.
I have an appointment with her to go over the final draft.

x posted thesis. thank you, you sweetie, worrying about me. I feel all 'touched'.

I told her I wanted Aspergers and Autism, (so AS and ASD) for the reasons Moose said.
Shall I stand firm on this ? When I meet her, shall I really push for this. Or just take the Autism ?
ANd what exact words shall I ask for ? Is it important , does it make a difference ?
Recommendations welcome.

I think the exact wording on ours is something like:

'diagnosis of Asperger's, which is an Autism Spectrum Disorder'

Nothing confusing or complicated about that, if anything I think it makes the dx clearer.

Disclaimer, I haven't actually got the file out to check the exact wording - but I think that was it - ish.

Thanks thesis. Poor you !!

Moose, those words sound good.

Or is there a more effective 'phrase' that gets more help/ makes people take more noticve ? I have no idea.

Plus, And i know I am really showing my ignorance here, but her report is 8 pages long already and she hasn't included the school visit, or the talk to dh today, or the phone conversation she had with my mum today. So it wil be long.
Do you get a shortened version ? Or a one pager, than gives the basics, that you can use to e-mail to all those who didn't beleive you and have been totally unsupportive ?

Hi Oblomov, sorry, I missed this thread, but really pleased it all seems pretty much sorted. I'd try to get that 'moose standard' DX, if you can, seems like the most useful. And paed surely can't argue with 'AS which is an ASD?' I've got a one page letter with my DS's DX which is a copy of the paed's letter to my GP. That's the one I used to flash at people.

Oblomov This person that Justa is talking about won't make you feel like an idiot for one thing and is likely to instill confidence in you wrt to her diagnosis or not. In short she is kind to parents but she's a well respected NHS paed with a private clinic so has a reputation to protect, and therefore will not simply give you a diagnosis for the sake of it/because you paid her iyswim.

She should be able to help you get to the bottom of your confusion and sort out the chaos.