Wednesday, 23 May 2012

The Diagnosis Part 2

After the paediatrician, we met with the Educational Psychologist (EP).  The EP came into school and observed him, spoke to the teachers and also spoke to us.  She also spoke with him on his own.  I found this appointment really helpful, to sit and discuss the issues we were having and the fact that she was able to offer explanations and help.  It was the first time we got answers and help! Also the EP said that whatever the diagnosis, she would be able to help and support us.  It was great to have the link between school and home so we could work together on solutions.  The EP introduced us to social stories and helped us in preparation for different situations ie hair cut and why we go to school.  The EP also discussed theory of mind which is where i feel we had a lot of difficulties.  He didn't feel the need to explain things and would get angry if I asked, as he believed i knew how he felt, when of course I don't know.  When she was able to explain this, it helped me to empathise with him.  Normal development means we understand we have feelings and that others have feelings, they are not the same and we have to talk to each other to understand one another.  In my sons case he had feelings and would expect me to know them ie i'm cold/hungry and if i didn't instantly solve his problem/feeling then he would be angry at me.  The EP came to school a couple of times for the diagnosis and post diagnosis, she is still able to help and offer us solutions/understanding.

After the EP we saw the Speech and Language Therapist.  I wasn't sure what to expect at this appointment because he has good language skills - or so i thought.  The therapist looks at his understanding and processing of communication along with his body language.  I introduced myself but I had to prompt B to say hello etc.  Again at this appointment there was lots of history taking and then there were lots of tests.  There were lots of pictures and he had to explain what is happening and what they were feeling.  He was also given sentences and he had to point to the picture to show he understood what was meant.  He is quite literal and doesn't always understand the meaning behind words eg 'pull your socks up' and couldn't always work out what others were feeling by their facial expressions, on some picture scenarios he was way off.  We only saw the therapist once.  Watching him go through all these different tests I could see how and why we were having issues with some things and it gave me a clearer picture of his capabilities so I could help and prepare him better.

In between these appointments we still saw our paediatrician and we also had our consultant appointment.  The consultant appointment, again lots of history taking and examples.  It is not the same history we go over in detail each time but different examples of his behaviours/obsessions.  They gather evidence for the triad of impairments for the autism diagnosis.  Looking back I wish I had read Tony Attwoods book or researched aspergers more thoroughly and then I would of been able to give the examples knowing what they were after, rather than reeling off bad stories about my son that made me feel a failed parent without understanding the relevance behind them.  I thought that you had to have a diagnosis before you could access any help and i thought that 'whats the point in researching something he might not have?'  I didn't realise how much of a benefit it could be.  I think because of my earlier experiences with medical professionals, my confidence was quite low and felt i'd be taking a resource away from someone who might really need it.  I was wrong - I needed it.  I think it was also partly due to my own journey of accepting I have a child with ASD.

When incidents happened that affected others, it was awful.  I felt awkward telling others 'its because he's autistic' without the official diagnosis and I didn't want people to write him off without giving him a chance.  Judging by our parents reaction - How would others react? There were times when it was evident there was an issue and then I felt I had to give them an explanation.  The school were good in allowing me to direct complaints to them but also I knew I had to battle it out too.  It took a while for the diagnosis to come through but in between this time his behaviours could no longer just be put down to age and I would have to be strong.

The EP appointments were really good and she gave me lots of points to take away, research and implement.  All the professionals were very helpful in helping me understand my son and how to make life a bit easier for us as a family.  I acted on their advise as we both want our son to fill his potential and want to help him as much as we can.

The consultant saw my son for one to one lone testing and to also measure his academic ability.  The end of the appointment I was called in to say there would be a meeting with all the professionals (a multi disciplinary hearing) to decide his diagnosis and then there would be a follow up appointment to discuss the outcome.  This felt like a long wait!

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