Friday, 27 January 2017

Hands up if you love someone with Autism!


I love a lot of people with Autism and there are even more people I love who love people with Autism. 


Love is the most powerful weapon

Parents of Autistic children face daily battles.  Faced with assumptions and judgements made on their parenting and their child by society, by friends and family, by other parents and even by education and healthcare professionals.  They battle the system; they battle with their child; they may mourn the loss of the life they had expected for themselves, for their child and for siblings.  Their patience is tested at every level and in every interaction.  At least one of my friends blames the end of her marriage on the domino effect of Autism.  But they fight with love!  You know who you are and I am in awe of you and your children.

No such thing as an expert

One of my closest friends has two beautiful boys both with Autism and both completely different.  At a recent school visit, a staff member introduced herself as an ‘Autism expert’.  As she retold the story we both laughed at the idea that one person could claim to be an expert.  But each parent can be an expert in their own child, how best to help them flourish and what triggers can be avoided. 

Of course, all parenting is a wonderful and challenging experience but I thought in this blog post I would give an anonymous voice to parents of Autistic children and ask them how we can help support and love them and their children in a positive and helpful way.

Another friend explained, 'As a parent of a child on the Spectrum, your life is always on the edge.  For a child on the spectrum, their life is always on the edge!

When I try to explain how each day starts for my son, I remember what I was told on a course we attended when trying to understand Autism and help him.   They told us each child on the Autistic spectrum wakes every day with a level of anxiety higher than many of us reach by the end of the day, and every step of the day can raise that level until a meltdown is inevitable.  

They used the analogy of a fizzy drink bottle.  Most children on the spectrum start the day with their bottle already half fizzy.  Every minute can add more fizz...Are his clothes where he expects them to be? Can he get into the bathroom when he needs to? Are his clothes freshly washed and maybe a little bit tighter than the day before? Has someone cooked breakfast and different smells are circulating around the house?   Are his socks irritating him when he puts on his shoes? All these unexpected events raise the fizz level instantly the moment he awakes and if calming activities are not put in place to reduce the fizz, that bottle will fizz over. Emotions will escalate until at an unexpected time it results in a meltdown, usually hours after the initial event.'

What is a meltdown?

A meltdown looks and sounds like a tantrum. But they are very different.   A tantrum has a purpose, usually to get something or someone’s attention and usually stops when this is achieved, but the meltdown is a reaction to something usually beyond their control and will not suddenly stop.

A friend explains; 'having tight routines in a day is to make as much of the day as predictable as possible to help keep the levels of anxiety down and lessen the chance of a meltdown.  However, so many factors  can influence that including unavoidable changes to the routine;  sensory matters (too noisy  – too smelly – too bright etc), and also other people’s reactions and behaviours.  At any point the balance can be altered by a comment, an action, or even inaction and all the planning and preparation to keep things calm can be overruled with extreme consequences.

At the height of a meltdown, my son is usually unaware of what is happening or what he is saying or doing.  Keeping him and others safe is the priority. You cannot talk to him as words cannot be heard. You cannot crowd him as he will feel trapped and the fight or flight emotions kick in.  It is best to quietly be there without eye contact, ignore the shouting, protect against the throwing and be ready to distract to get to a calm situation.'

What can I do?

Thank you to all those courageous friends who have contributed to this list ❤️

'Celebrate with me my child’s uniqueness and strengths (there are a lot of them!)'

'Lend an ear (and sometimes a tissue) when times are difficult.'

'Most importantly, don’t judge.  Don’t judge my child and don’t judge us as parents.  If you don’t understand Autism, that is ok.  We’ll try to explain but remember that Autism affects every person differently'

'Talk about it.  Ask what you can do to help.  Don’t wait for them to ask you.'

'Don’t take things personally.  Don’t be easily offended.  Check with the parent and listen to their advice.'

'Remember if you have met one Autistic child, you have met one Autistic child.'

'Please be understanding. I think one of the key things I worry about is that people will instantly label my daughter as rude.   I know a few children with more severe Autism that come across as selfish and spoiled because they don't understand instantly the need to share or if there is a lot of stimulation and noise around them, they may not answer if spoken to or they have poor spatial awareness so push into people!'

What charities can I support?


You can support local charities who offer support to Autistic children and their families!  There are two charities I am supporting as part of my Fortycubed birthday celebrations.

Autism Berkshire's mission is to help and support anyone living with Autism in Berkshire. They aim to 'enhance the current provision of services and support, with the purpose of improving the quality of life of people with Autism and giving them maximum independence'.  To donate as part of the Fortycubed campaign please click here.

Several of my friends have benefited from visiting Camp Mohawk'a multi-functional day centre for children with special needs and their families, set in 5 acres of beautiful countryside, just outside Wargrave, Berkshire. Throughout the year the centre provides a range of activities, facilities and natural space to encourage children with a variety of special needs to play, socialise and learn in a secure and caring environment'. To donate as part of the Fortycubed campaign please click here.

I have learned so much through talking to my friends in preparing this post.  I have also been enjoying reading 'My Son's Not Rainman' by John Williams who opens the book with a quote from an unknown source which sums up beautifully how we, as friends and family, could rethink how we approach Autism.

'I would like to travel the world with you twice.  Once, to see the world.  Twice, to see the way you see the world.'

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