Thursday, 17 May 2012

The Diagnosis: Part 1

After the community paediatric appointment, we felt a little hopeful.  It wasn't all in our heads. We were looking forward to getting to the route of the issue and knowing the best way to support our child.  I want my child to stay in main stream school and I want him to have successful relationships and mix well with others.  I was pleased that he was noticed as being different to others and felt this was finally being acknowledged professionally.  From this appointment she was very clear that we were looking at autism but i felt uncomfortable telling anyone, as it wasn't official.  Also because of the different experiences i didn't know who I could really trust or if the testing would reveal anything.

We were extremely fortunate that our first paediatric appointment came through fairly quickly and we only had to wait a couple of months.  The first paediatric appointment was a long one.  We went through lots of history and answered lots of questions.  We had to fill out questionnaires regarding his abilities, behaviours and milestones.  They took my sons measurements and weight and then went on to test him.  She then said he would need further testing and would be seen also by a speech and language therapist, educational psychologist and then a consultant.  They would all then meet to discuss the case including a report from school detailing why they pursued this along with evidence at a multi-disciplinary hearing and then I would know the results.  The tests were quite a commitment and were certainly thorough.  Its not a quick process at all.  We were fortunate and the diagnosis took about a year - it can take 2 years plus.
The tests during this appointment were done with me present.  He had tasks like naming everything that was in the picture that began with S.  He had to describe emotions and what was happening in another picture.  One of the questions that she asked my son was - describe a time when you were happy.  He was unable to answer.  It was heart breaking - he is not an unhappy child, he just couldn't recognise what a happy emotion is.  He said what he liked but had no idea if this made him happy or if that meant happiness.  I had just assumed he knew this emotion.  He speaks really well and has good language skills but its also evident that his understanding or processing of language is at a very different level.  I always verbalised 'i feel angry now' or 'when you did this i felt cross' i had never thought to verbalise happy feelings as we tend to just read someones face and expression to know.  The doctor suggested telling him how he's feeling, so when i know he's happy, to tell him.  It felt odd.  We then saw this doctor about 6 months later for more testing, as there is only so much testing you can do in a couple of hours! We now see his doctor every 6 months for his general check up but we also see other health professionals ie EP and different specialists in between.
I won't detail every test stage but give a brief summary of the events.  I think its important to give you an outline as it isn't a wishy washy process to get a diagnosis.  There is so much in the media about disability and benefits that I wanted to show you this is not something that can be faked or made up by the parents (also autism does not mean you are automatically entitled to disability benefits).  After we had our diagnosis, someone, did think that autism was a con to get benefits and really was just uncorrected bad behaviour... I assure you this is not the case!  We are dealing with other peoples prejudices or ignorance about autism as well as own pre-conceived ideas.  We've had to do a lot of thought searching and changing.  When it comes to being fraudulent, I'm not sure how you could and your child lie for so long, to so many people and to such great detail.  My children quite happily blurt out internal family things along with other peoples surprises or birthday presents - no prompting needed! 

If you find yourself down this journey I would recommend recording down examples of your child's behaviours and outbursts.  The doctors always ask for examples but it can also help you to identify a pattern and help to recognise triggers when you look at things less emotionally. 

Next post outline of the professionals....

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