Awareness and acceptance: there’s a difference

This week (2nd-8th April) is World Autism Awareness Week! My little brother, Ramsey, was diagnosed with autism just over a year ago. If you would like to read the blog post I wrote for last year’s autism awareness week, here is the link: https://theblogwithonepost.wordpress.com/2015/03/28/world-autism-awareness-week/

I used to hear people emphasise how much more important autism acceptance is than awareness, and if I’m being honest, this used to confuse me. I would think “But surely if people are aware of autism then they will be understanding?” It’s not until you have a family member with autism, or are autistic yourself, that you really gain an insight into the difference. Whilst I still believe awareness is very important, so is acceptance.

According to a survey carried out by the National Autistic Society, 99.5% of people have heard of autism before. Yet that doesn’t mean that those people understand or are accepting of people with autism.

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I can think of so many times when I’ve been out with my mum and Ramsey and people have acted ignorantly towards Ramsey. These are just a few of them… At Ramsey’s playgroup Christmas party, a comment came from a parent about how ‘naughty’ Ramsey was being (he wasn’t sitting with the other children and he was running around and jumping up and down with excitement). It wasn’t Ramsey’s fault that he didn’t understand, he’d done really well that day actually as it was a complete change of routine for him. On holiday last year, whilst we were on the train Ramsey was screaming due to sensory overload and people were staring and sighing as though they thought he was having a tantrum. Do they realise how distressing train stations are for him with being in a different setting, all the sensory information – the tannoys, the trains, the people? And even medical professionals can be ignorant! When mum was at the doctor’s Ramsey’s GP commented on how she thought Ramsey was getting ‘a bit big for his buggy now’ – unbelievable! Firstly, his buggy is a disability buggy designed to go up to an older age, so he’s not too big for it at all. Secondly, he uses it for his own safety. GPs of all people should know that!

And the problem is, the majority of these people will have heard of autism before. They just don’t use that knowledge to think “There might be a reason why they’re doing that, maybe that person has autism.” People then need to simply accept the fact that everyone is different, not everyone behaves in the same way. Autistic people need patience and understanding, not ignorant comments and stares.

A new drama on BBC called ‘The A Word’ (a brilliant series by the way, I definitely recommend watching it) is about a boy with autism, Joe, and his family, and so far it has covered a lot about acceptance. The mother in the programme finds it hard to accept the fact that her son is autistic, whilst something Joe’s sister says sums up acceptance perfectly: “He’s Joe, he’s always been Joe, why wouldn’t we want him to be Joe?”

Autism awareness is being aware of the fact that people with autism may stim, which may involve hand-flapping. Autism acceptance is accepting the fact that there’s nothing wrong with stimming, and not staring or making judgemental comments.

Autism awareness is being aware of the fact that some people with autism may experience sensory overload and dislike new situations. Autism acceptance is accepting this, but not excluding the person and still inviting them to yours/your child’s birthday party, and asking if there’s anything you could do that might make it easier.

Autism awareness is being aware of the fact that someone with autism might make a certain noise when they’re upset or excited. Autism acceptance is accepting the fact that there’s nothing ‘wrong’ or ‘weird’ in doing this, it’s just another way of expressing emotions.

Autism awareness is being aware of the fact that someone with autism may struggle with communication. Autism acceptance is accepting the fact that not everyone communicates in the same way, and trying wherever possible to use the person’s preferred method – whether it’s just a bit more time they need, less literal use of language, or visual aids such as objects or symbols to refer to.

Autism awareness is being aware of the fact that 1 in 100 people are on the autistic spectrum. Autism acceptance is accepting the fact that 1 in 100 people may think in a different way, and may struggle with some of the things you find easy. But most of all acceptance is: embracing these differences, not just assuming someone with autism is being ‘naughty’ or ‘lazy’, treating them with understanding and patience just like you would with any other person, not seeing autism as something that needs to be ‘cured’ but as a different way of seeing the world.

Whilst sharing things about autism to raise awareness and acceptance is great, please think about where that information is coming from. Autism Speaks, for example, are an autism charity in the USA, but they are not accepting of autism at all! They see autism as something that needs to be ‘cured’, they see autistic people as a burden, only a small percentage of the money goes towards directly helping people with autism and their families, those are just a few problems. This article talks about some of the problems with Autism Speaks: https://thecaffeinatedautistic.wordpress.com/2013/03/05/why-i-am-against-autism-speaks-and-you-should-be-too-2/. Some of the things they have done are absolutely awful, so please don’t ‘light it up blue for autism speaks’!

If you do one thing this week during autism awareness week, please watch this video by the National Autistic Society:

And use what you have found out from the video to be accepting of anyone who may look like they are having a difficult time in public. Consider the fact that they may not be naughty, they may have autism which means that they don’t need judgemental comments or stares, they need acceptance.

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Natalie 🙂

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