Thursday, May 10, 2012

Some Interesting News.

Recently, my son had some testing done by way of the PEP-3 (Psycho-Educational Profile - 3).  This test basically shows what skills my son has, and what is emerging so that we can get a clearer picture of his abilities and a better idea of where we can work to continue building his development.  As part of this testing, I had to complete a carers assessment - basically questions asking me what my perceptions are of his abilities.

On the day of testing, my Little Man was just amazing.  It was a good day.  He responded really well to the tester, even though he had never seen her before.  She was great - she had a really fantastic way with him and he truly seemed to gel with her in a way that made my heart smile.  The testing went for around 2 hours, and for that time, Little Man showed fantastic attentiveness to the tasks required.  Even when he was clearly not interested in the activity, he did at least acknowledge the task presented to him.  I came away from this feeling really pleased with his behaviour and confident that the test results would be the most accurate we could get from him, because he responded so well.

The results were interesting.

For normally developing children,  you would expect to see their results hovering close to the median.  Some points will be above this, some below - reflecting that some skills are better than average and some less than average - but generally, the points congregate around the median line.

With ASD kids, those points are far more scattered.  They can be far above the median, and far below.  They just typically go everywhere.  

For my son, they were not only scattered, but they were scattered way, way down where an 18 month old toddler would be.  His receptive and expressive language were the worst points of the bunch.

This does not translate to good news.

In a nutshell, what this means is that autism severely hampers my son's ability to learn and develop.  In other words, on the spectrum, he is severe.

This diagram is not to scale or perfectly representative by any means, but it gives some idea of what I'm talking about in terms of my sons skills (green) in comparison to a child with normal development (red), and a child with autism (yellow).  I want to acknowledge that all children with autism are different.  But  the yellow line can be a representation of what you might expect to see for a child on the spectrum with no other disorders apart from the ASD.  The straight blue line represents where skills should be at (ideally) for a child of 55 months of age, which is how old my son was at the time of testing.

The results also strongly suggest that there is another disorder/ syndrome/ whatever co-morbid with the autism.  Meaning that very likely he has another disability as well as AD.  Whether that is Mental Impairment, or Global Developmental Delays, or Apraxia, or whatever - we don't know.  I pays to remember though, that although there is strong evidence for this, it isn't a confirmed fact for Erik.   

The one good thing that came out of this was the assurance that my perception of my son's abilities was pretty accurate.  The testing showed I had a good grasp on where he was at in terms of skills and development, so that was comforting to know.  I can see things for what they are.

Part of my carer's assessment.

All of this taken together did not really surprise me.  Much.  I guess the official 'label' of 'severe' was upsetting to hear, and I did not expect to find the strong possibility of yet another disorder on top of the AD, but really, it all just goes to explain what I already knew about my son.

In 2.5 years of assorted therapy and changes implemented at home, he has hardly made any progress.  Oh, don't get me wrong!  I'm not saying he has made no progress at all!  But the things we do get really super excited about with him....?  ...lets face it;  they are very tiny things.  This post talks a bit more about what I was expecting and what is really happening.  

So, what does this all mean? ... Well.  I don't really know.  I know what it doesn't mean though.  It doesn't mean that there is no hope for my son.  It doesn't mean that he will never speak.  It doesn't mean that we will never see any further development.  And it absolutely doesn't mean I will give up on him.

I think the road will be harder than I anticipated.... the journey more surprising than I expected.  I think the highs will now be higher, and the lows, lower.  I think that this is going to be the ride of a lifetime - an adventure, if you like.  No smooth sailing here.

I guess I need to recheck my gear, top up on supplies and maybe schedule in some rest and a good meal before I set out again, now that I know the road is ahead really is not going to be so easy.

The you will experience God's peace, which exceeds anything we can understand.  His peace will guard your hearts and minds, as you live in Christ Jesus.  Philippians 4:7.


With special thanks to Chook for a word in time.