Two different diagnoses, one child

[BusyLizzie100]

Hi. Diagnosis is not complete yet, but I am having kittens that this is what the result will be! Aaaaaaaaaaaaaaaaaagh!

 

In brief (ish!), we had concerns over my eldest son after my middle son was given a confirmed diagnosis of ASD. We thought my eldest was a likely candidate for ADHD or Asperger's. His paed gave him a diagnosis of sorts of Asperger's, but after several months we decided to seek clarification because it was becoming more and more obvious he needed support and we didn't know what to do. The local waiting list was long, so we splashed out and went for a private pyschologist who specialises in this area. She came to our house and spent over three hours with us, interviewing me and spending time with and testing my son. She concluded that he had a classic case of Asperger's, as per the Gillberg & Gillberg diagnostic criteria.

 

Cognitive testing showed a high verbal IQ and a low spatial IQ, ie there's a huge discrepancy between intellect and physical ability. The psychologist suggests my son needs a Statement.

 

In the meantime, the appointment with the multi-disciplinary team came up and we decided to go ahead with it, in case more evidence was needed for a Statement. We are now in the midst of assessment. So far, their findings are inconclusive. They say his history suggests Asperger's, but in one-to-one assessment he wasn't convincing, ie he was 'socially engaging' and might not have Asperger's. Next, he had an art therapy observation, again inconclusive - the therapist said he was 'a bit on the fence'. Yesterday my son did the ADOS test (Autism Diagnostic Observation Test) and the woman's outline findings (ie, the test hasn't been scored yet), was again inconclusive - there were definite gaps in his social skills but is it enough for a diagnosis? The next stage is a visit to observe him at school next week, in the classroom and in the playground. Everything seems to be hinging on this visit.

 

Aaaaaaaaaaaaaaagh! The suspense is killing me! My husband and I are convinced that my son has Asperger's; we live with him and we see how much he struggles. School is just beginning to recognise that he has issues because his anxiety is taking over at school now, too. Up until now he has managed to mask his difficulties to an incredible extent, although we at home have been aware of them for some time. What happens if he is a model pupil on the day they visit? Is this really going to be enough time spent with my son to find out what he's really like?

 

How can one expert be 100% definite in their diagnosis, and another sit on the fence? What will we do if the two diagnoses are different? How will this affect the support my son is entitled too? I appreciate that having a label is not everything, but it's certainly a signpost towards getting the right kind of support for him.

 

Yesterday as we left the centre, after being told that the ADOS did not point directly towards an Asperger's diagnosis, my son turned to me in the car park and said: 'Mum, what game have I got on my Gameboy?' Silly question, I thought. I told him and then asked why he asked. He replied: 'Because I think that you and that lady may have swapped bodies and I wanted to check.' How freaky is that? Model child one minute, totally out of the box the next. I rang them up from the car park to tell them exactly what he'd said.

 

Sorry to rant on and on and on... I'm just a ball of nerves myself at the moment and I'm scared stiff that my son's problems are going to be swept under the carpet.

 

Please, please, stop my mind from whirling!

Lizzie

[mossgrove]

Lizzie

 

There are (ar least!) two issues here. Are the multi-diciplinary team wondering about whether he any diagnosis or which diagnosis to give. There is a lot of overlap between Autism, ADHD, HFA, PDD, Aspergers, ASD(Non-specific) etc. which can make it difficult to get the right diagnosis first time, esoecially in young children.

 

Simon

[lisann]

Hi Lizze got no adive but keep fighting and good luck

 

lisa x

 

 

[Malika]

Hi

 

I understand your confusion but sometimes specialist team are just very hesitant to give what ever label, if there are implication that you may ask for support they may well try to be a little vague especially if your son is a bit on the fence as they say.

Have you told them you had a private DX for AS that would certainly wake them up.

May be I am rocking the boat but I have notice that now AS children have a bit more recognition some specialist team (may be under some pressure from LEA or others) have found a way to get away from possible statement request and more and more are giving DX of PDDNOS which is never consider as serious as an ASD or AS DX, and very difficult as well to oppose or complain about.

 

As far as I know a private DX is as good as another!!

 

 

Malika

[BusyLizzie100]

Thanks for your replies.

 

Mossgrove, I don't know if they are considering alternative diagnoses. This is a child with definite difficulties, so we want the diagnosis to be correct so we can help him.

 

Malika, yes we gave them the private report after his initial visi, as it detailed the results of his cognitive tests and I know that there is a required time lapse between such testings. I think you've hit the nail on the head as regards my concerns - that they may give him diagnosis of sorts that is of no possible use to him.

 

Lisann, thanks for the support!

 

Lizzie

[Klou]

Hi Lizzie

 

I know exactly how you feel. We are in the same position. How old is your child?

 

We haven't gone down the route of a private diagnosis yet. Our MDA has been quite quick except we are now waiting for reports and I am praying he will see the specialist consultant. It seems to be the normal procedure round here but I am still worried they will sweep his case under the carpet and declare he doesn;t need to see him.

 

My main plan next if it is of any help is to wait and see what the reports come up with, get a second opinion on the psychologist report - the person in question only saw us for an hour and concluded he had a strong personality and then promptly went on maternity leave. I am trying to avoid thinking she saw us quickly to get the case closed.

If we end up here we will borrow or buy a video recorder to show just what he is like at home. It seems he can cope with the world too well and then loses it with us!

[BusyLizzie100]

It seems he can cope with the world too well and then loses it with us!

Hi Klou,

 

My son is eight in December. Reading other posts, diagnosis for AS seems to average about eight/nine - could we be a little early for him?

 

And yes, our son seems to have 'coped' with the world so far and then loses it with us, although now he doesn't seem to be 'coping' so well anymore. I even wonder if the fact that we've tried so hard to help him ourselves is backfiring in a sense - maybe we've taught him enough to 'cope' and it just masks his real difficulties more!

 

We had a similar-ish situation with out other son, nearly six - when he was diagnosed as having an ASD we were told he wasn't typical because he had a veneer of sociability, albeit very thin. But he still got the diagnosis. (Different people, by the way).

 

Lizzie