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Am I ‘normal’?

normal
/ˈnɔːm(ə)l/
adjective

conforming to a standard; usual, typical, or expected.

Is brown hair typical? What about blonde, red, gray. Are blue eyes usual? What about hazel, green or black? Are beauty spots standard? What about big lips, small feet, pronunciation. How can we say something is ‘normal’ when there are dozens of different body types, languages, dialects? When we suffer from allergies, have different taste buds, handle spice and heat in varying degrees and are shy, confident, anxious or sad? When we all have different abilities in math, sports, languages and even memory. From hunters to taking over the planet, social constructs have been a powerful tool in our conquests as well as our taming and undoing. Social expectations led to competition, innovation, scientific discoveries, cures and architectural wonders. But social constructs of class and what is ‘normal’ or beautiful have also led to genocide, poverty , abuse, racism and inequality which riddle our history, stain our future and which are all anything but ‘normal’.

In just the last 100 years our world – our ‘normal’ – has changed over and over again. From the fall of the Romanovs to the fall of the Berlin Wall, the Wall Street Crash, nuclear weapons and the war on terror to Gandhi, Mandela, Malala and then Trump and Brexit. From the Great Depression to Twitter, apartheid to landing on the moon, Chernobyl, #metoo, loving whomever you love and to the world’s first genetically edited babies – what even is ‘normal’? How come we keep fighting for these ‘normal’ ideals, preach, exclude, bully and not provide for every human simply because they don’t tick the ‘normal’ box when you – reading this – cannot define what is ‘normal’?

atypical
/eɪˈtɪpɪk(ə)l,aˈtɪpɪk(ə)l/
adjective
not representative of a type, group, or class.
If ‘normal’ cannot be defined – Every single one of us is atypical. Which makes us all typical in being unique, different, special, unusual, unexpected, abnormal.
Let’s talk about all the ways we exclude our fellow humans in every day life – with filling forms, education, fashion, language and expectations. Let’s defy all the social impediments we have put in place to facilitate notions of ‘normal’ and create a new social world which helps every ability and every human.
That’s what we have done with the SMILE project. We saw a gap in a system which meant that the Cypriot government didn’t understand the needs of it’s people and doesn’t provide equal opportunities to the communities it is supposed to support. So, we defied the ‘conventional’, we shouted from the rooftops about our kid’s rights – regardless of autism – and we imagined and created a space for them.
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Celebrate your uniqueness, your neighbour’s quirks, listen to someone’s opinions which are not akin to your own. Learn about hair colours other than your own and embrace all the things that make us typically atypical. Help, allow and encourage everyone around you to be the version of themselves they already are and not the one they think they have to be.
Donating to Autism Support Famagusta supports the local autistic community directly – donate here.
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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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Fading into the background

A new study published here – Distinct Patterns of Neural Habituation and Generalization in Children and Adolescents With Autism With Low and High Sensory Overresponsivity – on pubmed.com explores how the brain can fade repetitive or familiar sounds in order to allow concentration in neurotypical persons and compares the workings of the same function in neurodiverse individuals.

For most of us, sensory stimuli such as noises or unusual textures trigger activity in the part of our brain which processes sensory information. The more we are exposed to this stimuli, the more our brain is able to recognise it as familiar and tamp or manage our response to it. This process, called habituation. It helps us tune out background noise/sensations so that we can pay attention and process new information. Let’s take a fan as an example – you hear it when it’s turned on at the start of the day, you feel it every time it turns towards you, but you don’t keep hearing that buzz or noticing the gust every second throughout the day, unless you choose to.

The article’s objective is to explore sensory overresponsivity (SOR), which is an atypical negative reaction to sensory stimuli prevalent in autism spectrum disorder. The study monitored responses in three stages of sensory processing:  initial response, habituation (i.e., change in response over time), and generalisation of response to new but familiar stimuli.

The new study, by lead investigator Shulamite Green  (assistant clinical professor of psychiatry and biobehavioral sciences at the University of California, Los Angeles), found that some autistic children don’t show signs of habituation. This means that their brain does not fade out the sound of a fan, the gust of wind, a stray hair that tickles their neck but their brain keeps trying to understand the stimuli over and over again – which is overwhelming and exhausting.

You can read the very interesting findings at length through the link above. The summary is:

  • The team studied brain responses to sensory stimuli in 42 children with autism and 27 non-autistic children, ages 8 to 18 years, who have average or above-average intelligence.
  • The autistic children into two groups: highly responsive to touch and sound and those less responsive. 
  • Each child’s brain was scanned while it experienced a series of stimuli, each lasting 15 seconds: white noise, a scratchy sponge rubbed along the left arm, and then both at once. The sequence looped six times.
  • The team monitored the regions of the brain which process sound and touch, and the amygdala, which filter sensory information.
  • During the first two rounds of repetition, all children showed increased brain activity. The group with the less responsive children had a noticeable brain activity drop during the third and fourth rounds and remained low for the fifth and sixth.
  • The brain activity of autistic children with high sensory reactivity veered towards high for all six repetition rounds.

The team also exposed the children to one more round of stimuli using similar sensations but with a slight difference in texture and frequency. The brain activity for the group with the low sensory reactivity indicated that they recognised the stimuli as new but also that they were similar enough to tune them out. Whereas, the other group had high brain activity which may indicate that their brains were processing the stimuli as completely separate and new. It was also interesting to read that some children with autism showed no brain response to the new stimuli at all. This may mean that they could not tell that the stimuli were new, or that their brains had faded the response to the original stimuli so much that they couldn’t activate in response to the new information.

Next time you see a child covering their ears, a parent frantically trying to to put their sock back on, a crying toddler in a busy train/bus/airplane – remember that what you see is never the whole story. Our bodies and minds are vast and beautiful and different. Instead of getting annoyed let your brain fade it out so you can focus on something else – because you have that ability and they may not. Your brain’s natural reaction will be to habituate not to stare or glare or offer unnecessary parenting advice – so pop your headphones in, look out the window or engage in another conversation instead of focusing on the distraction – because you have a choice, people with autism may not.

If you would like a taster of what sensory overload can be like Autism Speaks has 5 video simulations that help you experience sensory overload.

Don’t let kindness, understanding and love fade into the background. See it, appreciate it, teach it and use your capabilities for good.

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21 and Atypical: Happy Birthday Steph🍾🍰

Stephanos is 21 years old today!

19358841_10154713771921238_1693404057_oJust like his bestie, he won’t be preoccupied with this day. His birthday will serve as a reminder to his family of how far he has come and how many Steph milestones he has reached. A birthday is too typical to be atypical like our boys. Stephanos won’t get excited about presents, or friends coming over for a party. His phone won’t be beeping with Happy Birthday notifications and he won’t feel the social pressure we feel when we reach a certain age.

Stephanos doesn’t live to please social norms, or to meet society’s expectations 27752278_10155332857716238_3880961810554679579_nof what a 21 year old ‘should’ do. As his mother has so beautifully put it “He may not accomplish University, marriage, or having children like in a “ typical ” world but he has been totally loved and supported by family , friends, schooling and society. I am positive if he could speak he would confirm in a verbal manner how blessed he is on this subject. Autism is part of society nowadays and we all do our “ bit” to accept and embrace because after all we are just human. We have all learned that a “ typical” world isn’t always for everyone. Society has its beautiful exceptions and Stephanos is an example”.

Stephanos lives to break the ‘norms’, exceed expectations, inspire and pave the way to a new and more inclusive world. He was the inspiration for so many actions taken by his family that have shaped and given meaning to my life. He inspired our group, the special unit in Ayia Napa, the summer schools for children with autism in our area and eventually the SMILE project. In a world where everyone wants to be an individual, Stephanos is the most inspiring of them all. Because Stephanos has allowed so many others to be themselves, to be individuals and to be exceptions just by being himself.

Happy birthday Steph. Thank you for inspiring my family, for opening doors for us we never thought possible. Thank you for being my brother’s friend.

Stephanos’ birthday closes my 21 and Atypical series (although I will be referring back to it with updates from the boys). So join me in wishing him a very happy birthday.

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21 and Atypical: Food, Glorious Food!

IMG_5234“He stares as we bring over the food, picks up the plate, smells it and then if we’re lucky takes a tiny bite; and by tiny I mean that ants would probably carry a bigger bit than the amount he is willing to try. Then comes the silence – we hold our breath, fists clenching, heart racing all waiting to see if he approves of the dish.”  Christos has been eating the same 5 things for most of his life; pasta & tomato sauce, curry & rice, egg & lemon soup, chicken nuggets, toast. When Christos switched to the GFCF diet my dad – chef extraordinaire – jumped to action and created recipes which incorporated all the things Christos wouldn’t try but which were nutritionally essential to his diet. Read more about Christos eating habits on Best food critic in town!

Stephanos was always very choosy with food as well. In 21 and Atypical: Stephanos we described how he went from eating fruity, colourful and varied foods to being reluctant and sceptical of them! He stopped trying new foods around the age of 1. Instead, Stephanos switched to pale coloured foods with a mild palette; for example, Cerelac, plain biscuits, bananas. Fruits with textures or colours stopped appealing to his appetite. Once he was diagnosed he switched over the the GFCF diet.

The GFCF elimination diet requires that all foods containing gluten and casein are removed from the child’s daily food intake. Gluten can be found in wheat, oats, rye, barley, durum, bread, pasta, cereal, cookies, soups, sauces, candy etc. Casein can be found in dairy products in general; milk, butter, cheese, ice cream etc. 

Marilyn Le Breton, author of ‘Diet Intervention and Autism’ explains why the GFCF diet may be the key to unlocking autism: “When you eat, the food you consume is broken down in your stomach… In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.” In 2018 the Microbiome Journal (here) published a study which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. – More on this in Hope in Poo .

For both the boys switching to this diet – in Cyprus 20 years ago – was incredibly difficult. Our family used to order and ship maize pasta from Italy, order specialist flour and bread to be baked at bakeries, pack a whole suitcase of suitable products to take on a month long holiday. My parents fought endlessly to convince him to eat these new products and, to some extent, it made a difference! He was less agitated, less tired and more responsive without gluten and cassein. Funnily enough, this year I have had to go on the same diet for health reasons. But now, everyone is falling over themselves to accommodate my dietary requirements. Now, we find it weird if we can’t find gluten-free products anywhere.

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I think back to cooking maize pasta and carrying it around in tupperware with grated halloumi in tin foil to take to restaurants or visits, the smell of egg and lemon soup in our room in the Maldives over a bunsen burner, all the packets of crisps my parents had to ration between the two of us to last him through the holiday. I think back and wonder how did we survive in a world that didn’t understand why we couldn’t just have ‘normal’ pasta? The answer is: parents. Their endless, relentless and ferocious attitude, resilience and unstoppable drive.

Today, Stephanos eats strawberries, salad vegetables and all kinds of colourful and flavoursome fruits. In fact,m the first time he tried a red strawberry he was 8 years old. Hi diet is varied and he doesn’t struggle to try new kinds of food at school or restaurants or even at home. Christos eats fish, meat, sauces and has no issue trying buffet options or airplane food.

The boys love food. In fact, they plan their day around it (just like you and me). Their body just digests food differently to some people. Following the GFCF diet as a neurotypical adult I have noticed so many advantages in my body, mood, mental health and my every day life. I don’t feel fatigued, bloated, grumpy, my skin is glowing, my hair is growing, my mind is alert and keen. Maybe the advantages of the GFCF diet are just a glimpse in the many, many things we all have in common.

#21andAtypical – but atypical according to whom?

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21 and Atypical: Stephanos

young stephStephanos was born on 21.06.1998. His mum remembers his first words being ‘Mama Papa’ before he was even 1 year old. His 5 older siblings showered him with love because he was the baby, the centre of attention. They were all enchanted by that big smile. Just like any other infant he ate a variety of fruit jars, fruit cremes and mashed potatoes and carrots, packed full of flavour and smells.

At 11 months, he stopped reacting to his name. He stopped eating colourful food and stuck to Cerelac, biscuits and Farley’s rusks. He closed himself off, deaf to his family’s calls for affection. They remember it as him regressing instead of progressing. He stopped saying ‘mama papa’. He started stimming – hands in front of eyes, flapping hands, tiptoeing and making sure all his trains and cars were in the right order.

At 2 and a half years old he was diagnosed with ASD.

Stephanos’ family quickly jumped into action. They tried most of the alternative therapies for autism as well as speech therapy, occupational therapy, hyperbaric oxygen chamber therapy, Applied Behavioral Analysis, one to one teaching and of course used PECS. With PECS his family started communicating with him again. With music therapy they got to see that smile again. With speech therapy his speech resurfaced. Little by little, they got an inch of him back at a time.

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With the support of his big, strong family Stephanos was able to express his artistic side. Nowadays, he has an art studio next to his home where he takes daily lessons. He loves painting horses, having started with a basic drawing and slowly adding the horse mane and the tail to eventually win an Erasmus award for one of his paintings. He also has music sessions three times a week and he loves it! In fact, he knows most of the Disney songs off by heart and he loves Grease the film – and I mean, who wouldn’t? His mum describes to us how on school days they have to play Peter Pan, El Dorado and Robin Hood in the morning, have a little dance and roll and only then are they ready to go to school and start the day.

Even through his verbal communication has declined over the years, Stephanos is a major part of the Prodromou familia. He makes them all laugh, he makes them proud with his art, he overwhelms them with pride when he simply picks up a piece of cheese from the fridge and makes himself a mini sandwich. Stephanos’ own milestones and accomplishments are the product of a long and difficult journey.

Through his ups and downs, he has grown into a thoughtful, caring, compassionate and talented adult who approaches you when you are upset and gets excited when his siblings visit. Perhaps the greatest thing Stephanos has done is inspire the people around him. His family, friends, teachers and other kids get to see his progress and have hope.  Stephanos’ story gives hope to newly diagnosed families that it will get better and even if it doesn’t there is a group of people who will stand by them. He has inspired his parents and my parents to take action and to speak up for him and for all the autism families who need it.

This is just the tip of the iceberg when getting to know Stephanos. I’ll be telling you all about what he likes, dislikes, his calming routines and even his bad days – because who doesn’t have one of those once in a while? We’ll dive into a beautiful, atypical friendship between two boys who accept, acknowledge and respect each other. For example, Stephanos does not like it if you touch your own face or head (same for Christos), yet! somehow they don’t bat an eye lid when one of them does it. Boys eh!

#21andatypical

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An autism sister watching Atypical Season 2, Episodes 3-10

It took me a while to get through this season because it is so emotionally charged. It’s a bit too relatable for me.

Ultimately, I want you to watch it and see these 6 things.

1: In episode 3, Sam walks out of his class at some point due to sensory overload. The way he walks out reminded me of my brother. The eyes, the mouth twitching, the hand shaking, the urgency in his step. He walks out of that class as if his life depended on it. Sam has autism spectrum disorder. Keir Gilchrist, the actor, does not. Creating a single, accurate portrayal of living with ASD is impossible. Therefore, to create something relatable to as many people as you can you endeavour to make connections through different interpretations of ASD. It is a colossal credit to the people behind Atypical that Keir was able to remind little old me of my autistic brother in that scene. You can hear what he has to say about the show here, at Autfest 2018 hosted by Autism Society of America. In the same breath, we are introduced to an autism group with a range of individuals. These actors are all on the spectrum in real life. Again, they do not represent the entire autism community but they are there, on the screen with their own traits teaching all of us that autism has as many faces as the ‘normal’ cult. We see that they are honest, they have insecurities we can relate to and they care and look out for each other.

2: Doug and Elsa 44333001_353571598538233_179029183383470080_nare encouraged to promote awareness after an incident with Sam. I don’t want to state the obvious but that’s what i’m doing with this blog, that what we are going with the autism support group in Cyprus, that’s what my dad does with hiring people on the spectrum to work with. It’s not me being me when I say that our people are inspiring. As soon as they waltz into our lives they start tearing down walls, they press a reset button and draw a line between who we were and who we are meant to be. They push us out of our box, and pull us into unknown territory. They open our eyes and give us the gift of purpose.

3: Bullying. We experience Sam’s school life without Casey and although it is heartbreaking to see, watch and relate to we are also reminded that people outside our family have our kids back as well. It’s daunting for an autism family to let go and not be in control. It is nearly impossible to trust when it comes to them because of how cruel our society can be to anyone who is not neurotypical. We are reminded that they will have friends and foes wherever they go, and that their friends are capable of loving them and defending them as ferociously as we do. We experience more of the friendship between Zahid and Sam in this season. It is refreshing to see a portrayal of non-family members and how attuned they are to the needs of the person on the spectrum. It demonstrates the impact a neurodiverse person can have on everyone around them. Zahid gives as good as he takes in this friendship and when he feels he’s out of his league he calls in the big guns – Casey.

4: Sam explains that autism is not an accomplishment. It is not something he worked towards or something he has overcome. For neurotypicals it’s easy to think of someone’s progress as ‘overcoming’ their autism but that’s not an accurate observation or conclusion to make. Autism is something he was born with. Autism it’s part of his physical, genetic, cognitive and behavioural development as a person. He can’t overcome it, because he is it. To Sam, autism is like having fingers and toes. Think of it this way: Some people’s toes are long, some toes are longer than others, some are tiny. Some fingers bend to the left or the right, some have big nail  surfaces some barely have any. No two toes or fingers in the world are the same which means that there are 7.6 billion different pairs of toes in the world. Some people can bend make different shapes with their fingers, some can paint with their toes. Some are ambidextrous, some don’t have all ten.  Who’s to say what a persons abilities are based on their fingers and toes?

5: Casey – Which I talk about extensively here.

6: It is painfully obvious how immense and substantial the research was when the concept of Atypical was cooked up.  The crew, the directors, the writers and the actors show us in every single episode that they are trying to understand all the hundreds of layers that exist beneath the surface of an autism family. Every member is their own person. They don’t have the answers, they don’t do everything right because an autism diagnosis doesn’t come with a manual. Their characters are not superficially drawn up scripts that react to autism. Not all their decisions or actions relate to the person with autism. Each member is a complex human being, who struggles with their insecurities, their past, their future, their friendships/relationships, and autism. They are deeply relatable and painfully real.

Bonus tip: It’s so so worth watching.