Autistic Traits

[jenk1]

What does it take to get a dx for DS?
Ive just come back from clinical psychology with DS, the psych says no to ASD,HFA,AS.

So what is it then i asked, well he has Sensory problems,OCD,severe anxiety,need for rigid routines-in other words complex needs.
Oh and Autistic Traits, i said to her, i dont understand how can you have Traits and not have Autism?
Well its obvious that the gene is in your family as you have AS but that in DS case its not manifesting itself enough to warrant a dx and the fact that he can socialise means that he is not dx.
So i said "Well I can socialist to a certain degree"
Then i said that i thought the latest research was theory of mind and she said well yes DS does probably have a problem with theory of mind.

What the heck do we do now?
How can he have ALL these symptoms and yet they refuse to dx him?

Feeling very angry and upset, hence the rant.

Jenk1, I think once you get another assessment and they are specailized in that field of ASD, I would I thought that stands more weight IYSWIM. larsxx

I would check vis a vis geograohical stuff though- remember out dx was removed partly because we moved across geographical boundaries and they wouldn't accept an English dx (Peachy mutters quiet obscenities to herself).

I would check on that.

Thats disgusting peachy, it really is, i dont know what to say about that - you must be fuming.
This chap works in the next district to us and apparantely is well known, he,s done work for solicitors,social services GP,s hospitalsetc, he also lectures at conferences so im pretty sure this will be ok, anyway ive just emailed him and asked him!!!!
Politely of course, i just asked what are local NHS, schools reactions like when he does dx someone as regards to funding etc, i will let you know what he says, oh and he also counsells Non AS partners and DH is very interested in that.

Just got an email from this guy and he says that he is well known in my area and that he backs up everything he says with reasons and that he will also come with us to any meetings and tell the school what DS needs, so that sounds really good

Jenk1,Thats great news, just what you need.

It will be interesting as may be the assessments will be more in depth. Has ds had any assessments like a ADOS? larsxx

excellent

yes he has had the ADOS and psychometric testing, they said that because he showed imagination in the ADOS then he cant possibly be on the spectrum despite having everything else, OCD,severe anxiety,rituals,need for rigidity in routine and hypersensitivity-they say autistic traits.
We disagree as DS can show imagination to a degree if its something that he,s seen eg a tv programme or a book and the questions that he was asked in the ADOS all revolved around his favourite TV programmes and things like "do you go to the cinema,what films have you seen etc, do you like going on holiday etc

Jenk1, but surely if he scored high in other areas he would fit a diagnoisis ASD, dont you think? My ds scored high in some area and not others but that would be true to most children taking the ADOS as they are not all exactly 'text book material'. I am surprised at the diagnoisis, do you think they just don't want to label ? larsxx

yes definately lars, the psychiatrist told me that she doesnt like to "label" children and offered my prozac for him
On thursday the psychologist said at the meeting we had with the LEA that "really it would be easier for DS to have a dx of ASD because it would make the statementing and help easier to access" i just thought, well youve shot yourself in the foot there havent you?
She also said that DS didnt need statementing as he was getting help from CAMHs but my aunty immediately said No- he needs a statement he,s not guaranteed anything without it.
It makes me seethe

offered me prozac for him that should say!

jenk1, My ds did not have a diagnoisis of ASD when he received his statement. I have his review coming up on Monday, but his diagnoisis has changed to ASD, this is recent. This was a second opinion. I'm sorry the original phsy he saw doesn't like to label but didn't do the ADOS assessments.

My ds did not fit all the boxes but that doesn't mean he hasn't got ASD, which the first pshy has now said well it can go one way or another. In other words another phsy can see things differently. I would say to you another opinion is a must. larsxx

Jenk1, it's not prozac you want it's help you need. I know how difficult this situation is and frustrating it can be. I feel very angry about the lack of support when parents are in this position. I saw a consultant he said ds scored high for the connor score (ADHD). Basically you need a good Doctor who knows their stuff and can tell you exactly what the problem is. larsxx

'doesn't like to label'....

yep guess what, that's what we got with the traits thing too.

Tosh, really is.

We are going to go ahead with the private psychologist but im wary of making the CAMHs dept my enemy as we will probably need them in the future.
Dont really know how to go about this, if anyone knows the correct protocol or whatever we would really appreciate it.
thanks

Jenk1, just tell them straight you would like a second opinion as you feel there is more to your ds, that's what I did. Child pshy asked his colleague to assess ds and received a different diagnoisis. He was nice about it and said that new eyes can see things differently. larsxx

would that be the same for a private psych?

Jenk1, This is something you should discuss with private psych. You can go to your GP also and asked for a second opinion.

This would be another assessment which they would have to take into consideration. larsxx

Thanks lars, i have left him a message.