A year of waiting, progress, and some good news maybe?

Over a year ago (April 2008) we participated in a study down at the Hospital for Sick Kids.
It was part of the Autism Research Project and they were looking for families with multiple kids on the spectrum for research, so we signed up. It was long and lengthy and involved 2 full days down at Sick Kids while they tested the kids, tested us parents and put us all through blood draws, as they are also researching the link with multiple spectrum kids and genetics.

Then there were several long phone consultations - and if you know me, you know that I like talking on the phone about as much as I like sticking a rusty fork in my eye. Lengthy phone conversations over an hour are akin to twisting said fork.

Beyond those, there were pages and pages of questions about each of the kids. This was a very very very indepth research project, and they told us that they would get all the results and send us a report in about 10 weeks. Since we did Joey's testing about 10 weeks later (in July '08) we weren't really expecting the reports until they'd had time to get his results as well, and then send them all at once.
Fast foreward 10 more weeks - we had been on summer holidays and didn't even realize that we didn't get them yet.
School starts up again....
A few issues come to light, and IEP meetings were scheduled when I realized that "Hey, we never did get those reports - I should call and see where they are" - This is October. They tell me that the reports are just about ready and that they just need to be looked over by the psychologist and we *should* get them in time for IEP meetings in November.

Yes, you know the story - they didn't arrive.
They didn't arrive
they didn't arrive.
I called
They didn't arrive.
I called again.
They haven't been sent out yet....

I lose the number to call.....

Around March I looked online and found a number to call, and pester them once again - you know what they say about the squeaky wheel. I wanted to be super squeaky. In fact I wanted to be that cart with the gimpy wheel that requires immediate rectification.

But still I heard nothing.

I am nothing if not persistent though.
I found the person in head of the research unit and emailed them.
I sent a nice - but firm email - I'm quite proud of my emails. My emails are great - I apparently have a gift with words, when I don't have to say them. When it comes to advocating for my kids - I will keep at it, and not give up.
Persistence pays off and I received an email back to say they are sorry it took so long an she personally saw to it that the reports were signed and sent out to me right away.

I received them last week. May 19th. exactly 1 year, 1 month and 1 day after our initial journey down to Sick Kids (which was an experience in and of itself taking the kids on the subway downtown during rush hour)

And now - The results:
Starting with Matthew - because I was thinking that he had made so much progress since he was first diagnosed, that they were going to say "sorry, the first place made a mistake, this is a typical 6 yr old" (well just shy of 6 at the time)
we got the results of 6 separate tests they did with fancy names like Wechsler (WPPSI-III), and Peapody (PPVT4), and Autism Diagnostic Observation (ADOS-3)

He went from testing >99th percentile in comprehensive phonological processing, to a socialization score of 6th percentile on the Vineland Adaptive Behaviour Scale, thus confirming a diagnosis of Autism Spectrum Disorder.

I was actually surprised - because at least two people had told me that the first place that diagnosed him was "diagnosing everyone with something" - and although *I* thought they had a good reputation, it seems that some people think they are a little too free with the labeling. Sick Kids however, is a world renowned and respected institution - so a confirmation from both places is pretty definitive.
It also means that NO, He has not "outgrown" it. He won't outgrow it - he will simply learn to cope with having it, and some things will always be difficult for him, even if it looks like it's not.

I was pretty sure Duncan would finally get a diagnosis. He exhibits more behavioural issues than Matthew does at times, and according to his teachers at school, they think he has *more* sensory issues than Matthew - although that is in a school setting, and not at home - or Maybe Matthew has just learned to cope more, because he's had extensive therapy.
Duncan had 7 tests, and while I thought his results were similar to Matthews - very high in comprehensive phonological processing (>92nd percentile) while his socialization was at 23rd percentile.
Oral expression - 90th percentile, Listening comprehension, 3rd percentile - Huge range which suggests some sort of disability
The report seems conflicted to me - they say he uses appropriate language, and then the next sentence is "used rather formal phrases throughout the assessment".
says no compulsion or ritual but "did occasionally refer to numbers to an unusual degree" - HELLO, That's his compulsion.
"he displayed relative difficulty in his ability to communicate his understanding of others' emotions".

So they say he did not meet the criteria for ASD - with a caveat..."given some suggestion of challenges with receptive language during our testing, it might be beneficial for him to be assessed formally by a speech-Language Pathologist"
So the good news is that he may not have Aspergers, although it seems so obvious to me (and to his teacher and to the SERT) that he does, and yet two institutions now have said he doesn't score high enough for a diagnosis. He definitely does have a receptive language disorder.

Joey pretty much fell below the 1st percentile on all 6 tests, that was expected at the time, but this was last year, and he's made so much more progress in the year between the report and now. Last year (age 4yrs and 2 months) he was pretty much a baby still - single word vocabulary was his highest score at 19th percentile, but his age equivalence was given as 1 year 11 months. He wasn't talking, at all other than repeating phrases, and wasn't toilet trained, but what a difference a year makes.
He is going in today for a speech reassessment and it will be interesting to see where they put him now.

So we will not get genetic findings for some time, and we will only be contacted if they identify information that has individual significance to our children or family members. I won't be holding my breath.
All in all, I am thankful for the reports - even though I may disagree with them in parts, and they are outdated now - it does give some insight into the kids areas of strength and areas of weakness.