Friday, 20 December 2013

Why Autism Investigates?

Hello and welcome to my blog Autism Investigates.  First I want to explain why I'm writing this blog and why I chose the title "Autism Investigate".  Many of you who come across this post will hopefully know of the uproar caused by "Austism Speaks" amongst the autistic community and autism advocates, most recently with their "Call to Action" (more on that later).  Luckily in the UK we don't have much to do with Autism Speaks but I know from many parents of Autistic children that their first port of call when they suspect their child may be autistic, and after diagnosis, is the internet.  It genuinely scares me that these parents first introduction to the concept of Autism will be something like the "Call to Action" or even worse the "I am Autism" video that was released a few years ago.
My own introduction to autism was a somewhat gradual process.  As a child I remember my mum saying autistic children were in their own bubble, lost in the world inside their head, and window lickers. Somehow I managed to miss watching Rain Man altogether but I remember watching a program with my mum when I was in my late teens/early twenties that talked about Autism and certain characteristic traits.  Traits that we both realised were evident in my father.
My dad, well he was maybe a little on what some might call the anti-social side.  I have embarrassing remembrances of him pinching my bum and pulling faces at me during parent/teacher nights or the time when he spent the entire school concert scraping a pound coin on the back of the chair in front of him.  Whenever at an event with a buffet that had a bowl of peanuts he would take the entire bowl off the table and eat to himself (if not crisps - chips to american readers- were a good substitute).  On our weekly visits to my maternal Nan he never went inside the house, just stood outside the back door on the porch.  One particularly embarrassing visit to hospital he spent doing impersonations of the people in the ward on respirators and one gentleman with Parkinsons, without any seeming realisation that he was doing something wrong.  He had a small group of friends within his field of interest (cable installation and television repairs), but seldom spoke to anyone else.  Many times we found confused visitors stood in the open doorway of the house when he had just opened the door and walked off without saying a word to anyone.  He also took a special interest in sci-fi books.  Our loft - converted into two rooms - was lined with 100s of sci-fi books that he had collected.  There were other traits that could be seen as fitting on to the autism spectrum as well.  Only eating certain foods, an adherence to routine, enough that looking back with the knowledge I have now to make the suspicion that he was on the Autism spectrum make so much sense to his behavior. But at the time we just shrugged our shoulders and got on with life.
Later on I changed my place of work, and found myself working alongside a couple of nice chaps on the Autism spectrum.  I'm so glad of this experience in retrospect because it taught me that Autistism is just something that you are, like being gay or straight.  Being Autistic is slightly different to the "norm", just like being gay is, but that doesn't mean that it's lesser.  The great thing about where I worked was the diversity of my colleagues and clients, both racially, socially and neurologically.  It also ticked something in my head that maybe I might be Autistic (I didn't know about the spectrum or Aspergers at the time).  Again though, I didn't give it much thought.  Life had plenty of other things to keep my mind occupied.
Then life suddenly got a lot more Autism focused.  I gave birth to my beautiful baby girl after an interesting pregnancy and somewhat interesting and problematic labour.  I wont talk too much about us realising that she had autism and her diagnosis as I'm going to write about that later on, but at 2 years old she was diagnosed as non verbal Autistic.  For us the feeling on getting the diagnosis was relief.  We knew she was Autistic, our only worry was that she might not get the diagnosis and the help that comes along with it.  Thanks to the wonderful Autistic people in our lives we knew that Autism wasn't to be feared.  We didn't lose hope at having our daughter diagnosed, instead it gave us more hope that she would be able to fulfill her potential by gaining access to support to make her life easier.  We were lucky.  We never thought that our daughter needed to be cured.  We never felt that Autism was some sort of monster that would steal our daughter away and destroy our lives.  We are so glad that in those early days we never stumbled across something like the "Call to Action" or "I am Autism".  To be honest if we had we'd have not believed a word of it anyway.  My little girl Rose may not have a voice but she still speaks for herself.  She has such a love of life and beauty of spirit as to make anyone who meets her think that the sort of propaganda that comes from Autism Speaks is a bowl of tripe.
And that leads me on to why "Autism Investigates"?  I tried to think of the one overriding feature of Rose's personality that encapsulates her Autism.  Yes she can spin and jump and rock like nobodies business - she even *shock* *horror* licks windows (and gives me such a cheeky look when I catch her at it).  But the one thing she loves to do above all else is investigate.  With her hands, mouth, feet, at different angles (both herself and the specimen in question).  She'll cover things up so that she can only see one bit at a time.  She even deploys what we call the "investigative eye" when she closes one eye for close evaluation.  New rooms need to be investigated thoroughly and she loves looking at things close up with a camera.  Sometimes she'll get so close to an object she'll bop her nose.  So that's why "Autism Investigates" because in our house it does, very thoroughly! :D

This is Autism Flash Blog

On Monday 18th November 2013 I took part in the "This is Autism" flash blog in response to Autism Speaks publishing their Call to Action.  This was my contribution.  

Those of you that know me personally will know that in June this year my little girl was diagnosed with Autism.  Last week on twitter I came across a statement by "Autism Speaks", the leading Autism charity in America talking about what they believe Autism is and how it affects the families of Autistic children and asking for a call to action.  I have seldom felt so angry.  It states that families with Autistic children "are not living". We exist in "fear" and "despair". Our children who are the cause of this despair are likened to being missing and gravely ill. This is how they want the world to view Autistic children and there families.  Our life is nothing like that.  

In response to Autism Speaks a Flash blog with the theme "This is Autism" has been set up for this Monday for those of who have been touched by Autism to give our views.  

So for me, this is Autism

This is Rose.  She has just turned 3 years old - the photo above was taken on her birthday.  She is cheeky, inquisitive, generally well behaved, and Autistic.  Did I also mention that she is also gorgeous :)

She loves being outdoors and has a particular liking for daisies, dandelion clocks and English Plantain (Ribwort).  There is a large photo of a daisy in our local library that she always visits to give it a hug and a kiss.

She also loves being by the sea and piggy backs with her daddy.

Did I mention she really likes piggy backs with her daddy :D

She also likes joining us in dressing up and cuddles.

So for me, this is Autism.  My beautiful smiling girl who is always a few seconds away from a smile or a giggle.  Who loves the colour yellow, is fascinated by people drawing and writing, finds tickles hilarious, loves letters and pictures of the sun.  Who likes to investigate everything, in every little detail.  Who loves to spin and rock and jump on the bed.  Who though she can't speak, is very good at communicating what she wants. Who may not give kisses when asked but "looks after" mummy when I'm poorly and gives spontaneous huge hugs (when she sometimes sneaks in a kiss).  Being Autistic is not without it's problems, but we work with Rose to help her overcome or work around these with the help of others such as Portage and Speech Therapy.  I don't live in fear and despair for my little girl.  She is not missing or gravely ill.  She is bright and beautiful and determined and curious and a ray of sunlight to everyone who knows her.  Rose being Autistic makes her who she is.  So for me this is Autism.  My little baby girl who stole my heart with the first look she gave me on the hospital bed, who is growing up so fast.  Never a burden, always a joy.

Of course I have to say all this - she is my mini me ;)