What Is Autism?

The technical answer to this question is somewhat longwinded and can be rather complicated to explain to someone who knows little about the condition.

And it was interesting to see recently on one of the message boards that we like to visit, that there was a discussion based around how you might explain your child’s condition to someone.

So… What Is Autism?

This question has always been a really tough one for us.  Whilst we ourselves understand what Autism is, and how it relates to Jack, we find it really difficult to put it into a short succinct explanation that people understand and can connect with.

We usually start with the social stuff, as this is what people see when they meet Jack.  We try to explain that Jack sees the social world through different eyes to many people, and that ‘typical’ social settings often make him anxious and quite irritable or stressed.  But for some people even this simple explanation never seems enough - we still have people look at us like they don’t understand.

Then if we ever need to go on to explain sensory issues, or other symptoms to people, it’s an even bigger challenge.

Some people associate their own ‘typical’ child’s behaviour to Jack’s by saying things like “oh yes, my child throws tantrums too when they’re tired”, or “my child doesn’t like shopping much either”, or “my child can be fussy about what they eat”.  But do they really ‘get it’???

So we continue to try and refine our definition and explanation, and when people do understand, it’s like a breath of fresh air to us.

Just maybe, one day we won’t even have to explain…..

But until then, if anyone can help with a short and succinct ‘lay persons’ version of what autism is, we’d really appreciate some input.

Happy birthday Annie! 

The concept of “little sister having a birthday” doesn’t fit well with Jack this year.  The usual autism spectrum traits have come out in full force, and with the birthday celebrations we have had considerable ‘mayhem’!!!

Tomorrow we should be back to normal though… in the meantime, we’re all going to take some time out and do some more trampolining.  The trampoline is new to our house, and has been fabulous.  Long live the trampoline!

Autism often receives much negative ‘press’ (so to speak) so today we want to give gratitude for some of the wonderful things that autism has brought to our lives.

1. Autism has shown us a different view of the world, that we would never have otherwise had the opportunity to experience.
2. Autism has brought us closer together as a family - we have had to overcome struggles together, and learn different ways of communicating and developing with each other.
3. Autism has given us a greater understanding of some of the challenges faced by many people all over the world - we are definitely not alone!
4. Autism has given us the opportunity to develop a greater sense of tolerance, understanding and acceptance of others and ourselves.
5. Through having autism as a part of our lives we have had the opportunity to meet some amazing people and hear and learn about many wonderful things that others give to our world.

We are lucky to have autism in our lives.  We are not disregarding the fact that there are always challenges that come as part of the package, but who we are as people is so much richer because of it.

Lines, lines and more lines.

Lines of toys, lines of books, lines of any object at all.

Lines are a common theme for many people with an autism spectrum disorder.  People with autism generally thrive on order and repetition in their lives (which is why structure is so important to them).

It is common to find that children with autism line up their toys, usually in an order that makes sense to them.  (In our house we have lines according to size, or it may be lines according to colour, or lines according to ‘likeness’ of some sort).

Lines are predictable and ordered. 

Lines can bring a sense of comfort and control - they can bring a sense of calm to the craziness and uncertainty of life.

“I need a bit of a kick start.”

“Give me a break.”

“I nearly jumped out of my skin!”

Heard these types of phrases before?  Most of us have, and many of us use these or other similar phrases at times.

People often use words (or language) to imply a meaning that is vastly different to the words literal meaning.  Most of us understand these different meanings and can put the words into context, but to a person with an autism spectrum disorder, this ‘understanding’ can be very difficult.

This is because it is common for people with autism to understand and use language purely in its ‘literal’ sense.

With reference to the 3 phrases above, then, a person with autism may be surprised that you need ‘kicking’ in order to begin something.  And they may be confused that you want to be given something broken.  And they definitely wouldn’t understand how your body could jump out of your skin (and jump back in again - how is this possible?!?).

And for a person with autism, imagine how strange and scary the world would seem if you were brought up to love and care for people, and taught that hurting and killing people is bad, to one day have your mother (who was having a bad day) say, “If you touch that I’ll shoot you!” (When you went to pick up her precious antique china vase that had been in the family for generations.)

Language can be complex, and to many people with autism it can be a struggle.  So when communicating with a person who has autism, choose your words carefully - and if you are receiving blank stares in response to your language, try rephrasing your words or explaining what you mean.

Being understanding and thoughtful with the language you use can go a long way to helping a person with autism feel comfortable in their surroundings and in the social environment.

We came across this poem that seemed to fit our lives so well:

Yesterday I attended an Autism Workshop with Donna Williams and I have to say it was fantastic.  Donna had many wonderful ideas and strategies on dealing with different aspects of autism, addressing issues and problems in a way that I had never really heard before.  Her thoughts and ideas were so practical and user friendly, to the point where I was able to come home and try out some new strategies straight away.

Donna talked about the ‘Fruit Salad Model’ of Autism.  She noted that whilst most people understand that every case of autism is different, people also need to realise that we can’t address or treat the difficulties of autism with a ‘one size fits all’ approach.

During the afternoon I took many notes (which I am now still making sense of, but will eventually be able to put into a format that is understandable) and really had my eyes opened to different ways of tackling problems.

Donna talked a lot about finding the right way to work with different personality types.  She explained that the degree of success you would have in working with a person with autism depended very much on whether you approached the person in a way that suited their personality.  I found this really interesting and immediately did a mental check on how I approached Jack (and instantly found ways where I might be able to improve in my approach).

I went to the workshop seeking help and ideas in an effort to try and improve what I did at home with Jack, and I definitely found some answers.  In fact more than just practical answers.

As any parent with a child who has autism would understand, it can be nightmarish facing the real world where there is often harsh judgement and a lack of understanding.  For myself, it is often an effort to ‘face the world’ and the safety of home is very comforting.  Donna made a statement very early on in her workshop, she said, “there are heaps of people like me - if I run away, what hope do they have?”  This statement gave me a wake up call.  It certainly won’t change what I face when I go out into the world with Jack (or make it any easier), but her words have at least given me a sense of needing to push on regardless.  One day Jack is going to have to face life without me, and I need to make sure I am modelling a sense of courage and worthiness to him - otherwise, what hope will he have?

Yesterday was an invaluable experience.  I think anything that helps us in our understanding of autism is a good thing!

PS - Donna’s website is worth having a look at!

Elissa

I have been looking forward to today with anticipation.  Today I am heading off to a workshop with Donna Williams on “Understanding and working with challenging behaviours in people with autism”.

Donna Williams (who has autism herself) is an international public speaker and autism consultant and I am so looking forward to hearing her insights and ideas - which of course I will share here!

Here is a thought for today:

“When I loved myself enough

I came to see I am not special but I am unique”

(Kim McMillen)

 Elissa

We came across this poem written by Wendy Lawson (http://mugsy.org/wendy), and it describes so well the struggle autistic people go through in regard to change.

Change, change and more change,
Of context, place and time.
Why is it that life’s transient stage,
Plays havoc with my mind?

You said, “We’ll go to McDonald’s”
But this was just a thought.
I was set for hours,
But the plan then came to naught.

My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.

How can life be so determined?
How can change be so complete?
With continuity there is no end,
Security and trust are sweet.

So, who said that change would not hurt me?
Who said my ‘being’ could not be safe?
Change said, “You need continuity”
In order to find your place.

For change makes all things different,
They no longer are the same.
What was it that you really meant?
All I feel is the pain.

It really puts things into perspective!

We were delighted to hear this ‘breaking news’ in Australia today:

PM unveils help plan for autism families

Wednesday Oct 3 11:20 AEST

The Howard government will on Wednesday announce a funding package to aid the parents of autistic children.

The package will be announced in a series of coordinated launches involving senior ministers across the country, including Prime Minister John Howard, who is on the Gold Coast.

Read more on this story at : http://news.ninemsn.com.au/article.aspx?id=84226

Despite the usual political comments back and forth between parties, claiming one’s policy is better than the other, it’s great news for Australian families.

Steve & Elissa.