Friday, 27 March 2015

Autism Awareness

So this week, is autism awareness week and April is autism awareness month.  The aim is to raise awareness of what autism is, in the hope that it will increase understanding and acceptance. 
I am a mother of an autistic child. I often refer to it as ASD - meaning Autistic Spectrum Disorder and depending on when you got your diagnosis, it could also be known as ASC, HF (high functioning) Autism, Aspergers and there are probably more names out there... 

It is a life long developmental brain disorder. The brain is typical but how it 'wires up' is different.  It is a life long disability meaning there is no cure.  It is a spectrum disorder meaning that each person with ASD is different - how it affects them will differ and how much that impacts on their everyday life will differ but they all have difficulties in 3 main areas - social interaction, social imagination and social language.  It is also widely believed that they all have sensory impairments.  I think that this is even being considered as part of the diagnostic criteria.  This means that how they interpret information gathered by the body's senses is different to how typical people receive this information.  My son also has a diagnosis of Sensory Integration Dysfunction and modulation difficulties, otherwise known as Sensory Processing Disorder (SPD) - again it depends on when/who diagnosed.  Confused yet? It can seem pretty confusing, I am used to the initials but it does take a bit of time getting used to it all and I am part of it.  I can imagine it is hard for those with no knowledge to really understand it all.  I believe (now) all diagnosis are named Autism - regardless of where you appear on the spectrum. For more information click here 

The cause of autism is yet unknown.  It is believed a possible genetic factor perhaps even combined with environmental factors. My husband and I often wonder if it is genetic... (AKA 'that is soooo you' discussions) so when I came across a blog with an Autism Spectrum Quotient test, we thought it would be fun to take it. Click here if you would like to read and try. Please note this test in itself does not give you a diagnosis.
I had absolutely no clue or desire to know about autism or any disability until I had to - my sons diagnosis.  To be honest if there was an indication that my son had a disability when I was pregnant (which was before I became a Christian) the chances of termination would have been high.  I didn't hate disabled people, I just had no experience, understanding and no knowledge. Which I guess equated to fear and exclusion, hence believing there would be no way I could raise a child with disabilities.  I didn't really give any thought to disability at all.  I believed how disability was portrayed in the media, as I had no other sources.  I think I thought subconsciously, they were different and lived in a different way to the rest of us.  Whilst I thought I had compassion for them - yes they should be entitled to help and anything else they needed, the thought is where it ended - I didn't really want to be part of their world or learn about it. 

More and more people are being diagnosed with autism, and they can't be segregated from the rest of the world. We are all in this together, therefore awareness is needed to stop the judgements, the segregation, take away the fears and instead increase acceptance and understanding.  This is 'our' world.

I now think differently - I have seen how difficult the world can be through my sons eyes, and my heart breaks for him.  I now have so much more compassion for those with special/additional needs/disabilities.  Autism is an invisible disability - it is not obvious at first glance.  This makes it hard/unwilling for some people to accept that there is anything wrong.  It is a developmental disorder so as a baby, he was just like any other baby, but as he has developed - he has grown in a different way.  As it is invisible and as it is a spectrum disorder, it is hard for people to put them all in one neat little box - each autistic person is different, therefore some find it hard to accept it exists at all.  Some people find it difficult to accept as 'it wasn't around in my day' well it was, it just wasn't as well known.  Also it was only recognised in the last century and as awareness spreads, older people are now also being diagnosed.  In the past, they may have been segregated or labelled differently.  The rate of infant mortality was higher and often children like this, were taken and raised in homes so they would have not been seen.  From our family tree, my granddad had forgotten about a sister he had.  She had epilepsy, so at a very young age she was taken to live in a home, where she spent her whole life.  Others just see the behaviours and decide it is down to parenting or the child choosing to be difficult.   Awareness is needed to change perceptions and accept that autism does exist, it is very real.  Some people do not like to refer to autism as a disability.  However, our experience is that it is disabling. It impacts all our lives.

Over this week, I will blog some more about what our lives are like living with autism.

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