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21 and Atypical: The stories we don’t tell

I remember so many 2am’s almost drifting into sleep when I would hear Christos whisper “Oh” and wait for me to repeat it. If i didn’ respond he would climb int bed with me until I did. Sometimes I didn’t use the right volume, tone or accent so he repeated it until I did, all night and as long as he wasn’t asleep himself.  By the time 6am came around and all three of us struggled to put his socks on, the right way. 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. By the time we were ready for school we had already lived an entire working day.

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Stephanos, while in bed at night will hear his mum – or whoever is downstairs – clear their throat and he will run down the stairs, go straight outsidem, lie flat on the ground in the garden and sing a song until he is not upset and he is ready to go back to bed. Just like anyone of us the boys have characters of their own. They get angry when people don’t understand them, when a sound is so loud or a light is so bright that it interferes with their welbeing – wouldn’t you? Sometimes, they shout, scream and lose control – don’t you? The difference is that you can communicate your frustration, you can talk about it and find ways forward.

But what if you couldn’t?

Christos’ triggers could have been anything when he was growing up. We were all learning, trying to get to know this ball of fire that was gifted to us. Sometimes the consequence was a million ‘Ohs’, sometimes it was scratching at a mosquito bite until it was raw. I remember his arms, legs and face bear the scars of his incessant picking at every bit of his skin and tearing off any protection we tried to offer. He twisted his arm, legs and head hair to the point of pulling it off. Other times, he would be hitting his head with a closed fist so hard it left a mark, punching his arms and legs while clenching his jaw in frustration to whatever it was we had done wrong. What could we do? He was obsessed with every little spot on him, us, clothes items around the house. We would wipe and wipe and wipe until our hands we sore but whatever it was he could see was still there. When he became a teenager his frustration grew, and so did he. He is 6ft something and 90kg, he overshadows me at 5.2ft (and whatever weight I am depending on the year) and the rest of our family, teachers, friends. He would throw anything that was in his hand. I remember him once throwing his school bag over a tall bush and into the middle of the road. I remember him squeezing my fingers in his palm until I cried or squeezing my nans arm until he got yelled at by mum. He dug his nails so hard into his own skin that it bled and then he would cry.

At 13, Stephanos broke a window in his home. His injuries were so bad that he needed surgery. The next day, he woke up in pain, disorientated, and with stitches. He ripped them off during his meltdown despite his family’s best and desperate efforts to help. His self-harm started during his puberty. He used a closed fist to hit the side of his face so hard that he caused the retina in his eye to detach. His family lived with his rage and self-harm every day for years, this had become commonplace. He didn’t communicate to say something felt off but one day his mum noticed a whiteness in his eye and took him to the doctor who confirmed that Stephanos is blind in one eye. To help control his outbursts, his family used medication to calm him down but they say they never got to the root of the aggression, which peaked at 16/7 years old. Was it pain? Was it sensory? All they know was that they felt lost.

The families all feel guilt for not doing enough and for any harm the boys inflict on themselves, for every behaviour, every sound or scream. Not only are they judged and stared at for every atypical behaviour, they judge themselves always striving to do and give more. What parent doesn’t feel that? Our parent’s stood up, against all odds, in a society that didn’t even know the word ‘autism’ and created functioning, well-behaved adults who understand, laugh and love. What were you like as a teenager? And if you weren’t taught to refrain yourselves would you know how to?

Sensory sensitivity can be a real struggle. We could lie and say we are used to it after 20 years but it’s still frustrating and I still get annoyed and fight with Christos. The only advice that exists is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. We don’t understand what they see, hear or feel and that is in no way your fault. To everyone else who doesn’t live with autism – sometimes we don’t even hear the screaming because we live in a ball of scream. Other times, we don’t react to the hitting or pulling or scratching or throwing because we live in a world where silence is not the typical. Once the 100th storm of the day has passed, Stephanos’ calming depends on which behaviour has been triggered. He may go lie down by the front door, run to the back of the house, sing a song and stim with his index finger or stay flat down reciting a song. He will shred flowers, grass and weeds through his fingers, at day or night and for hours. He goes back in the house, he smiles and suddenly the slate is wiped. You have the strength to take on another 7 storms. Once the millionth ‘Oh’ has been said, Christos will just repeat our names over and over until we look like we are happy. He will shower us with cuddles and make us apologise for what we did to cause it. He will laugh until we laugh and he will cry if we cry. He will apologise and smile. Suddenly my fingers don’t hurt anymore and his kissy face makes it all ok.

So what happens when we aren’t there? Where will these reactions be housed? Where 11165285_10206036337501718_7756282778690047842_nwill they find forgiveness? How will they be understood? How do you size them up, find what they need and keep them safe? In Cyprus, in our case, the answer is to create something our government doesn’t offer – or can’t offer quickly enough. We work to find ways to fund high quality facilities which are based on ethical and inspiring opportunities for children and young adults with autism in the Famagusta area. To recruit and ensure that their education and development doesn’t stop just because being ‘typical’ means you leave school at 18. The members of the Autism Support Famagusta charity work all day, take care of their family and rack their brains to facilitate activities and growth based on individual interests and skills. Two of the boys going into this home will be Christos and Stephanos will you help?

The stories we don’t tell are the stories where we are all to blame for not making this world a world we can all live, grow and be in. They are stories in which our pursuit for comfortable and easy conversations are depriving young adults their future. They are the stories in which we are the villains for not caring enough because it’s not our ‘problem’. Christos and Stephanos hide from the Disney villains on the TV and they turn the villains around them to warriors. Which one are you? And what will you do this April, for autism awareness month, to make sure everyone has a place in this world? Until every last piece of the puzzle fits?

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The [A] Word: Look for the [S]igns

One of the most important things you need to understand about fighting Autism is that it needs to be diagnosed as early as possible. Early diagnosis means early treatment; development of social skills; development of speech; creating a life and environment for them in which they can grow, not be restricted.

Red Flags

Not responding to their name by 12 months of age;

Not pointing at objects to show interest or curiosity;

Difficulty in establishing eye contact;

Not participating in ‘family time’; and want to be alone

Getting agitated in loud situations or in crowds;

Having trouble accepting change in their environment;

Having trouble expressing hunger, thirst, pain;

Have extreme reactions, to music, smell, food, colours, or the way their clothes feel;

Impulsive;

Impassive;

Short attention span;

Temper tantrums;

Or has flat or no facial expressions in different situations;

Delayed speech and language skills;

Repetition of actions or sounds over and over again;

Obsessive behaviour with one toy, or object, for long periods of time;

Hand movement, rocking of body, high energy and other self-stimulatory behaviours;

Or no energy at all, some kids are completely closed off;

I remember my cousins being so curious when they were infants, so interested in everything going on in the world and the people around them. Chris was interested in things around him but it was smalle10173765_10152395220290030_5414277748163382939_nr things like he didn’t look at us when we spoke to him, he didn’t want to play with me he’d rather play with my things by himself, he would throw tantrums when he was thirsty but couldn’t tell us or point to what he wanted.  For example, a child might be able to read long words but not be able to tell you what sound a “b” makes. When he grew up these things changed because of the early treatment he received. There was a year when we couldn’t hug or kiss him without him getting mad; there was a year of repeating the sound “ooh” every night before bed until i said it the right way, and most of the time i didn’t.

 

Repetition is huge with Autism. Actions, words, sounds, motions which can involve a toy, their body, an object, a person. These action are repeated over and over again. For instance, Chris likes to run up and down a room, when he’s happy and repeatedly flapping their arms, shake his head or make certain sounds. I’ve mentioned before how he likes to play with whipped cream and white flat-beans for hours; its the sounds, the feeling, the safety of repetition that draws him in; these activities are known as self-stimulation or “stimming.”

By their first 12 months a toddler will interact with people around them, by looking people in the eye, copying words or simple gestures like clapping and waving. You would expect to play peek-a-boo with them or interest them in playmobil toys; me and Chris played hide and seek sometimes, but it was mostly the case of me hiding and him finding me, or not knowing what had happened and getting on with a game by himself. We played peek-a-boo but he mostly looked at me like i was insane, there were times when he enjoyed it though. That’s another thing about Autism, they might close themselves off and then there’s this moment where you get to glimpse into their world, or they give you a look, a smile they have never given you before, and its beautiful.

Each person with ASD has a different set of social and communication skills; some speak, some don’t, some can but only some words, some can but cannot pronounce letters, some can write essays, some go to university. Don’t assume that Autism doesn’t speak, don’t assume that Autism doesn’t want friends, don’t assume that Autism doesn’t like handshakes.

People with ASD might have odd sleeping habits. They also might have moods swings or unpredictable emotional reactions. For instance, they might laugh or cry at unusual times or show no emotional response at times you would expect one. In addition, they might not be afraid of dangerous things, and they could be fearful of harmless objects or events.

Remember that Autism is a spectrum disorder, a child, or adult, will not have all the symptoms, or they might. That’s the thing about Autism, it keeps you on your feet; for the rest of your life.

Don’t be scared, don’t sweep it under the carpet.

Learn about it, educate yourself about Autism – get it diagnosed.