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The “Normal” Cult

29830733_10156190751535030_853762012_oIt’s autism awareness week if you hadn’t noticed & I read this article on BBC about women on the spectrum – It all made sense when we found out we were autistic . These women are teachers, PhD candidates, artists, comedians, psychologists and they are inspiring (& autistic).

About 700,000 people in the UK are on the autism spectrum, according to the National Autistic Society. That’s approx 1.05% of the UK population.

In a one-hour special for Channel 4, tonight 28 March 2018, trainee human rights lawyer Georgia Harper and artist Sam Ahern, who both have autism, aim to uncover the true face of autism in the UK today. I hope you’ll be watching.

Autism awareness isn’t just about the future of autism, it’s also about the past and present. It’s about every person who feels they don’t “fit in”, all the times it feels like everyone else was given a manual on life, a ‘lost generation’ of thousands of adults going through life without a diagnosis. Autism awareness is about informing, spreading knowledge, sharing stories, finding new ways, and removing the stigma imposed by a system that doesn’t understand.

Autism awareness isn’t spread only by those living with autism. It’s a plague – a good plague. Awareness is born out of love, it spreads with our voices and makes an impact with our actions. It starts with sharing a story with another mum, or with children asking questions, with major airports introducing measures to help passengers with autism, shops introducing ‘autism hours’ and employers investing in autism training for staff. All the milestones we have witnessed in the world in the 5 years started with a voice.

The biggest obstacle to understanding autism is the expectation to look ‘normal’, the imposition of being ‘neurotypical’ and the social bullying that makes us dismiss and disable anything outside this fictional realm of “normal-ness”. We are programmed to treat anything different differently but what happens when you can’t see the difference? We grow up judging books by their covers and learn to condemn them when the cover doesn’t match what we thought should be inside. You ask someone,”Why is it weird if someone won’t make eye contact?”. Unless it’s a cultural trait, no one can think of an answer except a variation of “It’s not normal”.

You see someone and they look ‘normal’, they speak ‘normalish’, their lives seem ‘normal’ – they have a PhD, or a job or a family and they fit in your category of ‘normal’. As soon as you find out they are on the spectrum your perception shifts. You think, “how? why? really?”.

Autism awareness aims to infiltrate and destroy the ‘normal’ cult we subscribe to. It wants to shatter illusions of what we are supposed to do, it wants to expand our horizons and adds new words to our dictionaries. Just like all the once outcasts of this made up and exclusive society of “normal” the autism awareness movement is working. One in 100 people in the UK are diagnosed with ASD, teachers and police officers are trained, there are groundbreaking findings in ASD research and major channels invest money in documentaries, series and autistic actors/presenters (or muppets).

Autism is becoming a regular headline and it all starts with a voice. April is Autism Awareness day/week/month: here are some things you can do to help – Until everyone understands ; Wear Blue ; 30 things to do in April .

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5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.