So what is my understanding of autism so far?

I am asked on many occasions ‘what is autism’? I have been attending support groups for a year now and have found that the subject of autism fascinates me.  I now live and breathe learning about autism, yet I still struggle to answer this question in a simple way.

It is a lifelong learning condition.  The autism spectrum is vast.  For every autistic trait there seems to be an opposite trait on the spectrum.  That is what makes it so difficult for me to answer this question.

I come across a saying regularly – ‘if you’ve met one person with autism, you’ve met one person with autism.’  This is so true.  It is a very individual disability.

I don’t feel anywhere near experienced enough or qualified yet to put this into my own words.  So to pinch a description from the National Autistic Society;

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people.  It also affects how they make sense of the world around them.

It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.  Some people with autism are able to live relatively independent lives but others may have learning difficulties and need a life time of specialist support.  People with autism may also experience over or under sensitivity to sounds, touch, tastes, smells, light or colours.  Aspergers syndrome is also a form of autism.

Often people think, (as I did in the early days) that because they have seen the film ‘Rainman’, which features Charlie Babbitt played by Tom Cruise, and his relationship with his autistic brother Raymond Babbitt, played by Dustin Hoffman, that they understand what autism is. Rainman is just one example of certain traits.  A person can be completely opposite to Raymond Babbitt and still be autistic.

Sometimes people know someone with autism and think that everyone is like this person.  They assume Freddie will be like this person.   I think the point I really want to make in this blog is that it is a very unique condition, that no two people on the autistic spectrum are the same.

I will talk in my blog about Freddie’s autistic traits.  I have seen and learnt about all sorts of different traits but I have no experience in these so I will only talk about Freddie.  For every trait he has, you can bet there will be another child with an opposite trait.

Different colour Jigsaw pieces and rainbows are often used to symbolise autism.  I’m told this is to symbolise that the autistic brain is made up of different pieces of different puzzles.  The rainbow symbolises just how gorgeous and colourful that brain can be.

So what is autism to us?  Autism is a gorgeous affectionate happy three year old boy.  He doesn’t talk but he certainly isn’t quiet.  He’s very happy playing in his own world.  Luckily he has two sisters who constantly force him to interact with them whether he likes it or not! He flaps his hands when excited, he spins to feel disorientated, he loves to line things up.   There are many things he struggles with which I am learning to manage.   With no speech and a baby’s understanding of the world, communication can be very difficult.  We have pictures of everything to show him what is happening next.  This is to try to reduce anxiety when leaving the house when he doesn’t know what is happening next.

I am always trying to picture how he sees the world.  An expert told me to imagine being placed in an airport where there are terminals all over the place in different directions. Everyone is speaking in a different language, the signs are in a different language.  It is very busy.  What would I do?  The answer is simple, I would panic.  This is how life can feel for autistic children on a daily basis and be the cause of many a meltdown.   Before we go anywhere, I show him a photograph of where we are going and give him a countdown.  “Freddie, 5 to playschool”, “Freddie, 4 to playschool” etc.    If I can learn to understand why things upset him, I can change the way we do things to help him understand.  Sometimes my daughters now start this routine for me whilst I am rushing about getting ready.

To try to explain where his understanding is at.  For example, if we want to go left and he wants to go right.  Other than photos of places I have no way of explaining to him in a way he can understand or accept that we are going left.   As far as he is concerned we are damn well going right!!  It then takes me to drag him kicking and screaming left.  This is my failure to plan.

Or if we are going somewhere he recognises and we have to change direction for whatever reason.  I cannot explain this to him.  Therefore I have to really really think about where we are going and plan, plan, plan.   For example, if I am going to somewhere near to my parents, I will have to think of a whole new route to get there.  Otherwise when we drive past Nana & Grandad’s and don’t stop, he will immediately become so upset and distressed.  Suddenly he doesn’t know where he is going anymore.     There is one particular road nearby that actually is really handy to connect us to the local bypass.  However for some reason he hates it, I mean he really hates it. I don’t know why.   Sometimes I forget and drive down it and all hell will break loose in the back! Again my fault, not his.

Autism is teaching me so much.

Autism has given me a whole new meaning to children’s milestones.  To appreciate every little step no matter how small.  In fact, to appreciate different steps altogether.

Autism has come into our lives, given us a good shake and has shown us a beautiful world we didn’t know existed.  In the early days I read a passage in http://www.ncb.org.uk/media/875114/earlysupporasdfinal.pdf ( Very good read) that really helped me make some sense about this world.  It said;

‘I thought I was going to Paris.  All my friends were going to Paris and I thought that’s where I was going too.  But I suddenly found I wasn’t in Paris. I was in Amsterdam.  That wasn’t where I’d set out to go.  But now I’m in Amsterdam and I’m looking around, and Amsterdam is different to Paris.  But actually it’s quite beautiful in its own right’.  And it really is.

Autism is teaching my daughters, kindness, patience and compassion.  They are growing up with a knowledge of special needs which they accept so innocently.   It is making us all better human beings.

Autism has taught me that a child can say I love you without saying a single word.

Autism is changing me, for the better.

And finally, he loves apples.  I mean he really loves apples!! It’s the only fruit he will eat.  And whole, not cut up.  He takes a while to eat one and will really concentrate on it.  Therefore they are my life line!   Apples calm him when he is upset.  Apples keep him occupied when I need him to stay settled in the pushchair for the school runs.  People often say to me how nice it is to see a child eating fruit.  Which, yes it is but, to be honest, if swizzles had the same calming effect I’d have boxes of them.  A quick shop will always consist of bread, milk and 3 bags of apples!

Before I knew my son was on the spectrum I followed a friend’s blog about her son who has autism and sensory processing disorder.  By following her blog (www.cheeriosmilkandspoon.wordpress.com – Find it, it’s great) I gained an awareness of this condition before I even had a personal interest.    I hope I can do the same.  For people to read my blog and gain an understanding on any level.  Surely this must be a good thing.

So the answer to my original question, ‘what is autism’?  Well, this is still a work in progress and I wonder if I will ever be able to answer this in one sentence.  There are so many different areas I am yet to learn about.  My brief experience so far ends with under 5’s.  I am desperate to learn as much as I can. Basically autistic children\people see the world very differently.  To pinch a phrase from Temple Grandin, who is a famous autistic public speaker –  ‘Not broken, not less.  Just different’.

It just means we have to learn how to see the world through their eyes and help make it fabulous!

Alexandra 🍎🌈