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 🍎🌈

 

As this is the internet I have changed my children’s names

Last year my son Freddie was 2 years old. His sisters were 3 & 4.  Having them so close together meant we were roughly aware of what a child should be doing at the age of two.  There were only so many times I could put things down to him being a late developer.

“His sisters talk for him”. “He’s just being lazy”.  “He’ll catch up”. “He’s a typical boy”.

Everyone had an opinion on why he wasn’t talking yet, on why he would be distant at times and why he wouldn’t interact like other children.

Maybe they are right we thought.  We’ll just keep an eye on him. This time next year he’ll catch up with his sisters. But deep down we knew there was something different about him, something unique.

A trip to the Doctors led to him being referred to a paediatrician.

Knowing what I know now, I can see that the paediatrician recognised immediately that my son was on the spectrum.  However, he was quite delicate with me in telling me so.   “Does he always flap his hands like that?” “Does he always lead you to things by the hand like that?” “I’ll see him again in 6 months but I think he is on the autistic spectrum.”  Unfortunately he didn’t really give me much more information.

I left that appointment in a bit of a daze.  Ok, so now I have a reason for Freddie’s behaviour.  I know now why he doesn’t talk, why he flaps his hands excitedly, why he has no sense of danger, why he doesn’t play with his sisters or show any interest in the animals at the zoo, why he doesn’t look at things I point out to him, why he doesn’t point out things to me, the obsession with apples!  But I still didn’t really understand about autism.

I knew it was special needs and that he has a disability.   This is an incredible amount to take in.  The uncertainty of what the future may hold.  Would he ever talk, will he ever be out of nappies, will he ever be able to live independently, will he ever be able to have a relationship, will he be bullied, will he be happy, did I cause this? (I didn’t).  Will I be able to be the Mum he needs me to be.  A million and one worries raced through my mind.  Suddenly despite everything being the same, everything was different.  I felt quite lost.

At times like this, boy do you need your family and friends around you.  My husband was great.  I often hear of parents who struggle to accept the diagnosis.  I am lucky to have a husband who takes everything in his stride.  He would say with a cuddle “So what he’s autistic. So what!  He’s still our boy.”   We both work opposite shifts and are like ships that pass in the night.  I need to talk about things and talk about things and talk about things. It’s how I deal with stuff.  The majority of people were absolutely amazing and so supportive.  I really learnt the meaning of family.  I will never forget just how fantastic my parents, my best friend and even my work colleagues were at this time.  It taught me a lot about the type of person \ friend \ daughter \ Mother\ I want to be.

Desperate to understand I turned to the internet and googled ‘autism’.  I learnt about red flags.  Red flags are what professionals use to measure on paper whether a child is displaying signs of autism. These can be  repetitive behaviours, obsessions, humming, lining things up, lack of social skills, attention to detail, toe walking, not liking change of routine , echoing words, playing alone, meltdowns, spinning, hand flapping, only eating a few foods, not sleeping, tics, licking, sucking, and chewing on objects, rocking, teeth grinding, non verbal, lack of eye contact, developmental delay, lining up\stacking up things, snapping fingers, stimming, staring at moving objects -wheels, trains, rolling eyes, dropping things to hear their sound etc etc etc

I submitted several ‘Red Flag – is your child autistic’ online surveys.  Freddie has several of the above red flags and the surveys would all say the same.  Seek professional help, which I had already done.  I was just trying to learn more.   I even watched you tube videos of autistic 2 year old boys.  I came across some extreme therapies and basically just frightened myself.   I ended up ringing this company who told me they would put a plan together with various therapists.  This would cost around £30,000 a year!!  Surely there must be help out there that didn’t require us to re-mortgage!

Eventually I came across the telephone number for our local autistic society.  I rang, not even sure what I was going to ask.   This telephone call made all the difference! (Why oh why couldn’t the paediatrician have given me this number and saved me a lot of heartache)

The girl who answered put me at ease and invited me in for a chat immediately.   I was unbelievably excited for this appointment.  This girl – SHE KNEW!   I had so much to ask her.

We went in and she explained everything to us.  She spoke about autism with a lot of enthusiasm and interest.  She informed us of the support networks that existed.   We left feeling so reassured.  She gave us hope.  Hope that everything was going to be just fine.

Since that appointment a year ago, we now attend regular play and support sessions with her and the team.  I have made several new friends with parents just like us.  I have met the most beautiful children, all on the spectrum in their own unique and beautiful way.  Freddie is in a nursery and has 1:1 assistance.  We have a fantastic behavioural therapist who has made a massive difference in our lives.  From her first visit she showed me a way to play with him to encourage speech, eye contact, taking turns etc.  She just understood him immediately and understood how I was feeling.  I count down the days to her visits.

He attends another special needs nursery where the fantastic staff, some of whom are volunteers, work with him.  They concentrate on teaching him social skills that do not come naturally to him.  Whilst they work and play with him, I sit in the parents room next door putting the world to rights with the other Mums and Dads.  This keeps me sane! We most certainly are not alone.

I have come to terms with it.  I still worry for his future but on the whole I try to be as positive as I can.  He has his struggles but generally he is happy.  It doesn’t bother him that he doesn’t talk.  It doesn’t bother him that he isn’t like other 3 year old boys.  I wonder when he is older, if he may read this and be amused at all the courses, therapists and research etc.

We have started to visit special schools in the area and are so excited by what we have seen.  That there are well equipped schools and teachers who are trained to teach him in a way he can understand.   I felt so relieved walking around these schools.  I even recognised half the pupils from our support groups.

We are at the start of what I’m told is quite a frustrating system to get him a place.  I have to get him a place.  I will keep you posted.

The hubby and I are looking forward to doing some courses together.  We are about to start two autism awareness courses run by our local autistic society and the National Autistic Society.  And hopefully a Makaton course!  Rock and roll eh!

My Nana died this year at nearly 101 years old. Nana herself had 3 children one after each other and often rang me just to let me know she understands.  Before she died my Dad told her all about her great grandson’s disability.  This amazing lady understood fully that Freddie sees the world differently and needs a little extra love and support.  If a 100 year old lady can understand, surely anyone can.

And so this is the purpose of this blog.  To share what I am learning and raise awareness.   The more people that understand, the better the world is for our family.

I have a lot to learn yet, I hope we can all learn together.

Alexandra