The A Word and other such things…

The Beeb possibly thinks it is being radical and right on airing a television drama about a family with a young son who has autism on a prime time slot.

We had Chris Packham tell us all about his life with aspergers and the difficulties which he has faced as a consequence.

He also touched on the use of Applied Behaviour Analysis in America. ABA is used here to excellent effect and this needs to be recognised.  Zach learns using ABA delivered by Beam a specialist ABA provider and there are whole schools of pupils learning using it right here in the UK. People need to know that!

I have many friends who have family members who have autism to a similar degree as the child in The A Word and who have aspergers and I am sure that they can relate to these programs and identify with the drama and facts.

I can’t bring myself to watch these things!

So many people have asked me if I saw The A word or the Chris P documentary, I didn’t. I am guessing that people think I would be interested in them because they are about autism but they aren’t about my son’s autism or many other young people I know who have autism. They don’t relate in any shape or form and I can almost not bear that people think they do.

For some reason (and I know I have blurbed on about this before) families who are living with someone they love who has severe autism and challenging behaviour are rarely, if ever acknowledged by mainstream television.

A few years ago the lovely Louis Theroux filmed in America one of his documentary programs on Autism and a school which was helping pupils who have challenging behaviour and difficulty coping with daily life. One of the reasons Louis gave for filming in America was that there has been a massive increase in Autism in New Jersey. News flash Louis, it isn’t only America!

I watched this 2012 documentary with interest, I can remember it graphically showing young people who have massive anxiety and communication difficulties in full melt down at home with their struggling families and how well it portrayed the stress and despair for those families and young people.

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Louis Theroux and his 2012 documentary ‘Tough Love’

 

 

 

Autism and complex needs is a recognised term for describing what Zach has. The complex needs covers just what it says.  Daily challenges which change on a weekly basis so just as quickly as Beams expert team of behavioural psychologists get a handle on one behaviour, Zach decides to change to another equally challenging behaviour just to keep them on their toes.

Repetitive behaviours which come and go, throwing things out of the bathroom window has recently re appeared in Zach’s repertoire. Expensive skin creams and cosmetics need hiding again.

With colder weather most people want to keep their windows shut and the warmth in, Zach has started opening the bathroom window as wide as it will go. If I ask him he will close it but I am not always aware it has been opened until I feel the wind whistling around the house.

Zach has also started turning lights off when he leaves the room which is great unless you are left sitting in the dark!

None of these things are the end of the world and as with every aspect of life we have to pick our battles, so what if my bare mineral eyeshadow which I have yet to wear disappears out of the bathroom window, or John is standing in the shower naked and wet before he realises there is no shampoo or soap in the bathroom as it has all gone the same way as my eyeshadow! These things are a minor inconvenience and we learn to live with them very quickly.

We never have any toilet paper in our bathroom, it is kept in a special secret place because our back yard was covered in more loo paper than a whole litter of Andrex puppies as Zach sees toilet paper and it immediately gets thrown out!

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Very cute! The toilet paper on its own is less cute and much less so when it has been raining and is strewn all over the back yard!

 

We are used to compromise in our house and in our lives which is usually fine unless we are being pushed very hard by other aspects of life and it can seem especially tough.

The most difficult thing by far is the challenging behaviour, that is something which no matter how often it happens we can never become used to. Zach’s challenging behaviour at home has decreased since Beam started working with him, they offer consistency and have given him the tools he needs to be able to communicate which is fantastic.

Even though the challenging behaviour has decreased we still both are victims of the aggression which Zach feels when he is excessively anxious, tired, hungry, unwell or maybe just feel incredibly frustrated.

Would people tune into a drama about a family living in Hertford with a gorgeous son who throws things out of the bathroom window and switches lights off leaving his family in the dark? The likelihood is that they wouldn’t and I entirely understand that.

But why do organisations such as The National Autistic Society react as if it some major coup to have The A Word on television?

Sadly its rather like Rain man all those years ago, Tom Cruise and Dustin Hoffman in what was a nice film but led many people to think that anybody who has autism is a mathematical genius or has some other amazing talent.

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Nice film but it was just a film!

 

 

Although the National Autistic Society do some good work they are mainly geared towards families such as the one portrayed in the Beeb’s offering about autism. We are members and there is so rarely an article or campaign which is relevant to our lives I often wonder why we bother.

The Challenging Behaviour Foundation is a charity which was set up by a parent, they share excellent advice and information and is far more useful and relevant to us.

www.challengingbehaviour.org.uk
Louis and Chris if you are reading this and fancy finding out about Autism and Complex needs please do get in touch, I know of many people who could contribute and want their family members to be better understood by the general public.

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