(AS)D for Diagnosis!

The CDAC was today - the end of the line or the start of the journey depending on how you perceive it. The CDAC/CDC = Communication Disorder (Assessment) Clinic is the last of a year long series of tests, observations and interviews at home, at the hospital and at his Montessori nursery.

Tokoroth's case was passed up to the consultant paediatrician, after the earlier assessment by Dr N who thought that a more senior colleague should make the final diagnosis (because it was felt that Tokoroth was only-just or not-at-all meeting the criteria for an ASD).

I stopped blogging about all of the stages we have been going through because, as I have explained, I had grown more fearful of the Fragile X diagnosis and just stuck my head in the sand a bit and left it to Tok's mum to coordinate the battery of recent tests and interviews.

The Waiting
This morning though as we sat waiting for the team to call us in I made a list of his current strengths/deficits against the core triad of impairments. Some days he is more autistic than others, something I refer to jokingly as the 'autistic pendulum'. Although he has made a lot of progress with his IEP (Individual Education Plan) crafted by the SALT and local SENCO and implemented by the nursery with support from us I still felt he was ticking a lot of boxes. Enough, in my layperson's opinion, to warrant a diagnosis but with that diagnosis being applied according to the ICD the best I could envisage was PDD-unspecified which isn't quite as encompassing (or useful as it happens) as the (U.S.) DSM-IV-TR equivalent of PDD-Not Otherwise Specified.

Again, it's not the label that's important, it's the help and services a diagnosis unlocks as well as paving the way for a choice between mainstream school or an 'MLD' school (for children with moderate learning disorders).

I listed the characteristics he still exhibited under the social/communication/repetitive behaviour headings and wondered if I'd get a chance to present them to the consultant.

Waiting for the CDC to begin...

The Interview
The morning started with Tokoroth going off with a SALT and his special needs health visitor who, without parents present, ran him through a series of tests (possibly DISCO, I forgot to ask) and the consultant interviewed Tok's Mum and I (possibly the ADI, again I forgot to ask and was also trying not to 'flag' myself).

The interview went well and the consultant pre-empted a lot of of my concerns by evidently drawing the same conclusions from the years reports and assessments. I hardly needed to have worried that she would miss any of this stuff. She made the point about the diagnosis being made according to ICD criteria and again I kept quiet. The interview progressed and I made some gentle points about his imperative/declarative pointing and his echolalia and just like the previous paediatrician she actually welcomed these comments so I just went ahead and talked through my list and unburdened myself about the Fragile X fears. This is where everything started going really well.

The Chat
The consultant said that she felt he warranted an autism diagnosis but still had to go through the processes with her colleagues. She said that she would immediately organise a series of blood tests to rule out Fragile X, any form of thyroid problem as well as a creatine kinase test to rule out any form of muscular dystrophy. The last two tests are simply because he is small for his age but mostly just to give me something else to worry about, I'm sure.

The Waiting Revisited
Eventually we were sent out while the consultant and the rest of the team deliberated, cogitated and digested the morning's sessions. A little over an hour and some anxious coffees later we were called back in.

The Diagnosis
The jury had considered and was about to deliver its verdict. And there it was, written on a piece of paper. Right there, in black and white (and slightly pale yellow due to crappy phone camera).

The Diagnosis

I could hardly believe it. Straight up plain and simple ASD. Just as I called it a year ago before I knew my ASD from my elbow. This piece of paper was in a blue folder which, as Tok's mum put it so perfectly 'unlocks the keys to the city'.

"Wow," I said to the consultant, "he's one A short of an ASDA!" (for the Americans that's the Walmart equivalent of 'four quarters short of a dollar' and I apologise for my awful sense of humour!).

The Help
With immediate effect Tok is under the supervision of the Early Years team who mentor him through pre-school up to age 5. In addition we have regular scheduled speech and language therapy (rather than observation) and access to sign language classes, picture exchange systems and a whole set of interventions I have been coveting for the last year.

Finally, finally, some big, BIG help.

But there was still one more question to be asked: "WHAT'S IN IT FOR ME?!" and as it turns out there are some little extras like a little card that gets you priority access to toilets, let's you jump the queue at theme parks, all the, you know, REALLY useful stuff!

The Parking Permit
Top of that list of 'stuff' for me though is the revelation that we might be entitled to a blue disabled parking permit. I can't tell you how amazing these things are for parking in central London! So for another month I still have the blood tests to worry about, Fragile X could still be the cause of his ASD and a co-morbid condition. Also the bloods could reveal issues relating to his growth and development. But, in the following few weeks while I worry about that, I am under strict instructions to stop hugging him affectionately while referring to him as 'my little blue badge'!