Feeling cheerful about World Autism Day



So far my Easter Holidays has been like this:



Rather than this:



That was Easter 2010. The year before our lives changed forever as my son's autism really kicked in in the weeks leading up to his 10th birthday.

You see I believe that autism changes lives in a more fundamental way than other special needs.  And remember I have an 18 year old with severe physical and intellectual difficulties, who also had many complex medical needs when she was small. But I got on with it, and after a tricky start, normal life resumed after a fashion. Everything had to be carefully planned, but with a bit of research and imagination, most things were doable.  But autism is different. And one of the big differences that I see between autism and other special needs is this:

Special needs means you adapt the environment to suit your child.

Autism means you change your life to suit your child.

Take going to the beach as an example.

Wheelchairs and beaches don't mix well: they are very hard to pull across the sand, which also wrecks the moving parts. But you could use an old buggy or use/buy a special beach buggy. Keeping medication and food dry and sand free is another challenge, but it can be done. Perhaps you will only be able to stay for a couple of hours - between toilet breaks - but you can still do it.

A child with autism may simply refuse to go, even if they appeared to it enjoy it previously.  And sometimes no amount of therapy, rewards, threats, persuasion or bribes will change their mind. Push them, force them and you are likely to send them over the edge into meltdown, which is horrible for child and family alike. The autistic child is NOT being difficult. Like all children, they are doing the best that they can. But they experience the world in a very different way, so something about the beach is overwhelming them so much that they cannot cope.

The beach could be...

...too bright in the sun.
...too unpredictable, with children, animals and beach toys hurtling in every direction.
...too uncomfortable underfoot for a child with sensory issues.
...too noisy, with the waves, the gulls and all the sounds made by adults and children.
...too strange, scary and anxiety-inducing.
...too smelly, with the aroma of seaweed and salt.

Whether your autistic child can speak or not, they may be unable to explain what is bothering them. And even if they can, you may not be able to fix it: ear defenders (they block out sound) and sunglasses may not be enough. With other special needs, you can usually spot the problem, and work on a solution.

Even if you do manage to get your unwilling child to the beach they are likely to be miserable, so why would you go. The result? Trips to the beach are no more.

Back to where this post began: the 2015 Easter break so far has been very productive, with lots of phone calls, trips to the supermarket to keep Smiley happy, appointments made - and kept - which means more items crossed off the 'to do' list.  But a holiday it is not.

So I'm glad that World Autism Awareness Day exists, because it just might make more people sit up and listen and suspend judgement on autistic children and adults, and be understating and supportive towards them and their families.  And that's my reason to be cheerful for this week.


Ojos World


18 comments:

  1. People think it's so simple, 'just make them go' is a sentence I hate! I wish for more understanding, if just one person looks up autism today, then the day is a success xx

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    1. That little sentence makes me want to scream too! xx

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  2. What I find hard with autism, is the unpredictability. You're right, sometimes a child is happy doing something one day, and refuses to do it the following day, for no apparent reason. Sometimes my son refuses to go to the playground, for no reason. We still go because his brother wants to. There are tears and screams, but we still go. And once he's there, he's fine and enjoying himself. Go figure... Dealing with autism can be very frustrating both for the child and the parents...

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    1. When they don't want to go, but enjoy themselves when they are there, I think that's anxiety. And it is very tough to deal with .

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  3. That line says it perfectly, that autism means you change your life to suit your child. It is different, yet the same.

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  4. I love your posts and perspective. Enjoy the Easter and hope you get a break along the way.

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  5. I completely agree with this and often think how lucky I am that Hugh doesn't have autism or behavioural difficulties (despite the difficulties he does have). I think your sentence about with special needs you can make adaptions but with autism so much more has to change. xxx

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  6. In this one simple post you have given so much information, thank you C for helping me understand just a little more. Mich x

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    1. Thanks Mich for reading and for your support and interest as always xx

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  7. Having a Son with Aspergers I really understand where you are coming from. It's not easy and has such a profound effect on all of the family but despite the struggles and stressed there really are some lovely happy times.

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  8. I am so sorry that I am reading this post so late into the month. The time has whizzed by. You have explained the difference so well, thank you for that. xx

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    1. Oh I am glad you think so, as someone with so much more experience than me xxx

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