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Judging me, judging you.

I just finished a session on unconscious bias which was aimed at helping us understand why, despite equalities supposedly being enshrined in law, society is still so unfair. By understanding unconscious bias we can begin to frame prejudice as something we are bombarded with from the world around us and realise that only by developing our response to it can we really eliminate it.

What is unconscious bias? Our background. Our childhood. Our favourite fruit, show and personal experience with a University or a salon or a neighbourhood. Everything around us is made up of societal stereotypes and forced into cultural context because that is how we can even begin to comprehend the world around us. For example, think of these 3 words – pilot, personal assistant, 5 year old. Did you think – man, woman, neurotypical? Of course, you did. I did too.

Unconscious bias has evolved alongside our cognitive functions, our history and our own individual experience over thousands of years. Trying to fight it is helpless, but learning to accept the thought and actively choosing to change it is how we will start to shift the bias for future generations.

Let’s take a child as an example – what do you think of? A boy, probably, around 4/5 years old, maybe just started walking and playing with some sort of toy. You don’t think of an 8 year old girl struggling to spell, speak, eat, or walk – but she’s a child too. So, next time you are speaking to a parent of autism and your mind catches sight of that fictional boy hold the image and open it up. Let the parent tell you about their child’s tantrum, their dietary preferences, what they are learning in speech therapy and let those words shape the image in your mind. Holding on to the original thought means you will think – aren’t they too old for a tantrum? What kid doesn’t like chips? Shouldn’t they be doing more advanced stuff at this age?

Let’s say there’s an adult walking towards you, on his tiptoes, making grunting noises – what do you think of? A man, drunk or on drugs, probably, and it immediately triggers your defence instincts. There’s nothing wrong with this reaction because your survival instinct is too strong to manipulate – it’s been developing for millions of years. Stop judging yourself for judging people on appearance because that’s all the information you have during the split second your instinct kicks in. It’s what you do after the thought that speaks to who you are. You wouldn’t think it’s an adult with autism just walking and stimming for many, many reasons. Maybe you don’t know about autism, maybe you don’t know stimming, maybe you’ve had a hard day – but what do you do when you do realise, or when you know?

I know I use this example too often but let’s think of a busy, long flight and a screaming kid – what do you think? Probably some profanities, judging the parent who can’t ‘control’ their kid, wondering why, of all the planes in the world, it had to be this one. Well after all those thoughts, which will take about a second to form and go through your mind, remember how different we all are. Put yourself in the parent’s or the kid’s position. Maybe you know about sensory overresponsivity (from my previous post *winkwink*) or maybe you just put your headphones in.

Unconscious bias will have an impact on our decisions and actions without realising. We will relate more and offer more allowances to people we know something familiar about – like people who are from the same country or enjoy our kind of music – and we will judge people who don’t like what we think is the bomb.com, like smoked salmon or Stranger Things. We will be more inclined to learn about different abilities if we know people who have them – like autism, Downs or paraplegia – and we will be more sceptical of conditions we don’t understand – like Tourettes or palmar hyperhidrosis (clammy hands or feet).

How we react when we recognise unconscious bias is what we should noticing, passing on to others and using our experiences to shape a new image for pilot, personal assistant and 5 year old. The first step is to stop judging yourself, for judging others. The rest of the steps are up to you.

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April 2018: 2 new facts

  1. In 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to today, a day dedicated to raising awareness about ASD across the world.
  2. Numbers published by the World Health Organisation show that approx 1 in 160 children are diagnosed with autism. That suggests that of the 7.2 billion people living on Earth, approx 45 million are diagnosed. Plus the lost generation and women that never received a diagnosis due to a variety of factors.

45 million! Autism is no longer a hidden disability.

Autism awareness is not confined to this day, or to this month. We fight for it every day to help educate people on how to better understand autistic people and lessen the stigma and discrimination that autistic people face in every day life. Awareness means that the community can identify and respect the autism spectrum. Awareness means that the financial burden families have to bear may be lessened with proper access to support and by making autism education and alternative therapies a mainstream issue.

Welcome to autism awareness month.

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Christos’ Skills

Funny Fact: Christos loves to cycle at school.
When he was learning to ride a bicycle, he got so used to the training wheels that it took a while to get him to get used to the fact that he could still ride a bicycle without them. Now he rides a tricycle and he is happy.

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Christos’ Faces

Funny Fact: Christos loves Pizza Hut, he has never eaten pizza.
He eats bolognaise, every Friday over the summer, when he gets to go to Pizza Hut and then to the park to play on the trampoline.

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The [A] word

I’ve been reading a lot of articles lately that (albeit trying to educate) put Autism in a box.

Autism cannot be conceptualised. It’s a force to be reckoned with and like any powerful force it doesn’t appear in one standardised form. It comes in the inability to take a different route home; repetition of words or actions; finding it hard to engage in casual conversation; hand movements.

Autism is something you need to accept. Realise that your child needs you early on rather than spending years in denial or consumed with anger and “Why us?”. Acceptance from others is something you cannot control. It will frustrate you and break you; but you need to get up and hold their hands proudly. Do not hide them away, they deserve to be allowed to live a full life even though it will inevitably put them in a position where they will be stared at, pointed at. As long as you are there, by their side, none of it matters. Remember that the children don’t realise they are being stared at, they don’t know people are pointing at them, it’s you and your own inhibitions. Don’t let that take away their walks in the park, their playtime, their eating out or going on holiday. Embrace their traits and make them visible to a world which doesn’t really fully understand Autism still.

Don’t apologise for who they are. When they are happy and running up and down, when they are trying to tell you something only you can understand, when they rearrange things in a shop, when they want to go on only one ride over and over again. But also, don’t make it an excuse when they misbehave, don’t use Autism to let them be aggressive, or to be rude to people around them. It doesn’t matter if you are in a public place, they need to know what is allowed and what is not. Don’t let them get away with throwing things or screaming if you can, remember that with Autism it’s all about routine, re-occurrence, do not set a precedent.

When Christos screams of gets mad at a restaurant or a supermarket we whisper the word ‘silence’, a hand gesture to make him aware that he needs to change the volume he is speaking in, he’ll still repeat what he is saying but in a whisper, which then enables us to take control of the situation – it takes time, but persistence is the key. He knows he cannot get up from the table, he cannot grab people to show them what he wants, he cannot throw his clothes on the floor or go to bed without brushing his teeth. Not all children can be taught etiquette though, especially with more severe cases it’s hard to even make eye contact, much less to react to social cues; but I can only comment on our experiences and hope that it helps you.

It all starts at home, if you raise them with restrictions, if you make them feel excluded from the world they will sense it; inadvertently or subconsciously, just because they don’t have a voice doesn’t mean they don’t have something to say.

Raise them with pride, show the world that Autism is something that can be tamed; we cannot defeat it yet but we can try our best. Be proud of their achievements – even though society will tell you they are small. Remember that every little change, every development and everything they achieve is because of you.

Teach others about Autism, let them learn from you. Don’t make it a word we have to whisper, don’t let it become an excuse.

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Thinking about the things you don’t think about: a) The Sock Wars

I’ve been talking to parents of non-autistic kids and it suddenly made me really aware of how differently we see every day things. Like getting dressed for school, putting on socks/shoes, brushing teeth, fixing up hair, shaving, haircuts etc. This is going to be about the things you do while thinking of your day, your plan, a conversation. This is going to be about the things you do automatically, the small compromises you make when your shoes are a bit uncomfortable, the haircut you get while you chat away to your stylist, the minute amount of effort you put in washing your face in the morning. I want to make people aware of how different our lives are, why our worries may seem unusual. I want to let other parents know that they’re not alone.

The first post will be on socks.

Chris loves walking around barefoot, to the point where half of my dads day would be spent on running after him to put his socks back on or to wear shoes. He would wear them and then take them off almost immediately, run to us and give us hugs and kisses, just in case we got mad. There were shoes, slippers, socks everywhere. In an ironic twist of events now he wears shoes, slippers, flip flops around the house all the time. It used to take about half an hour to an hour getting him ready for school in the morning. The hour usually came as a result of what i remember as the ‘sock wars’. photo (1)

Following on from the sensory sensitivity posts, socks were our biggest struggle. Somehow, even though he can dress himself and do everything by himself, socks were the only thing he would not put on; we had to do it. They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again.

It’s quite funny thinking about it now, mostly because I haven’t been part of that ritual for years, but I cannot describe the stress that develops from putting on socks. Bottom line was if he’s uncomfortable everything has to start again. There was no compromise, no slight adjustment and just go along with it. If it happened during the day, at the school, the supermarket they’d come off.

Sensory sensitivity can be a real time consumer. I’d say don’t get frustrated about it but that would make me a hypocrite. Me and my dad would just give up after the tenth time. My only advice is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. You know how sometimes your socks might be inside out, or might not match? That doesn’t happen in our house. Even if we wore sock the wrong way, he would make us take the off and put them on the right way.

Five paragraphs on putting your socks on – how many lines would it take you?

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Listen.

Sensory sensitivity

Carly’s Café – Experience Autism Through Carly’s Eyes

This video gives you a glimpse into sensory sensitivity.906209_1403665576540888_2039932750_o

This does not happen to every person with Autism, no two children/adults on the spectrum have the same behaviour/sensitivity. But when you see them get frustrated in a noisy place, this might be why. When we yell, or when the tone of our voice changes even slightly – whether its sad, happy or angry – Christos knows, he picks up on it immediately. He knows when we use milk or goat milk; he knows when his tea is a different brand; he knows when his spaghetti is gluten-free; he wants certain songs to be on louder, others to be lower; he likes certain texture in clothing; a certain flavour in food. He wants to be himself; that’s all our kids want.

This is just a glimpse into the world of a fraction of people that live with Autism; don’t generalise, don’t put Autism in a box.

Don’t give into stereotyping.

Don’t intensify the stigma.

Don’t feed the monkeys.

Educate yourselves and create your own unique box.