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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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Preach & Teach

A voice mail message has come to light where school staff, in Matravers School in Westbury, asked a mother to keep her autistic son at home during an Ofsted inspection. The school suggested that her son took an “authorised” absence.

This happens in schools every day, this isn’t just about Autism, or Downs, or dyslexia, or anything specific – it’s about children being targeted and scarred – not just by children but by members of staff as well. How can we expect an inclusive society, an educated, compassionate world if we preach without teaching?

Another parent, said his 15-year-old son, who has dyslexia, was told by a teacher that his lessons would be swapped during the inspection “because they didn’t want any disruption in classes”.

A couple of months ago a teacher said “I was told to ignore a child’s autism to keep fees coming in”.

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Two severely autistic boys’ parents threatened legal action against a school, claiming they were shut in a room for hours each day. The boys, aged 12 and 14 were pupils at Abbey Hill School in Stoke-on-Trent. They were kept in a cupboard-sized calm room; the room in the picture. The door was not locked, yet it was closed and there was no handle on the inside. We’ve talked about sensory overload or deprivation and there are certain environments that facilitate this and the use of seclusion and ‘calm rooms’ are recognised. They are positive tools to use to assist autistic children, but how does a cupboard with two sleeping bags constitute a calm room? A room with no escape? Or just a room to shove people in when you can’t be bothered to deal with them? Incident reports detail how the boys charged at the door and tried kicking the door handle until it broke. Incident reports about a child trying to get out of a room, which is supposedly designed for their benefit. The log shows him spending the majority of his school day in the room.

A Kansas community is was recently grieving the loss of a 16-year-old autistic boy. Maxwell Webb took his own life. He didn’t leave a note; he was bullied. His father said the mistreatment wasn’t addressed by the school’s administration and was the major factor out of several that led to Maxwell’s death.

An Ohio family says that their 15-year-old boy with learning disabilities was bullied and misled into stripping off and subsequently getting covered in feces and urine. The teen thought he was participating in the ALS Ice Bucket Challenge by his peers.

Listen. Learn. Grow. Accept.

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Christos’ Love

You know how they say children with Autism hate to be touched?
Not true. Some may be overly sensitive to touch, sound, smell. They don’t lack emotion.
Christos hugs, laughs, kisses, cuddles, teases.
Don’t stigmatise the spectrum with stereotyping.

Educate yourselves about Autism.

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The [A] Word: [I]gnorance

Josh, pulled out of Acton swimming baths in London placed face-down by seven officers who restrained him, shackled and handcuffed him.

Andrew Young, killed by Lewis Gill with a single punch in Bournemouth.

Faruk Ali, beaten by two police officers while helping men collect rubbish because he looked suspicious.

Man charged with beating an autistic boy, 16, at a Florida house party.

I can name each and every situation I’ve been in where I could tell that people were afraid of my brother.

Just recently, in August, I took him to our local bakery to get him crisps and iced tea. He got so excited, he stormed in gave me what he wanted and waited for me to get my stuff and pay. He ran up and down, shook his arms, shook his head and made ‘noises’, people stared but we didn’t even notice. Then, as we were waiting in line, I asked him to stand by me and he did; he still shook his head and hands, jumped up and down a bit, gave me hugs and kisses. The cashier then thought she would share that she “..was frightened that he would hurt someone in the shop“. I’m not sure what possessed her to tell me this, maybe she had a death wish; either way it made me want to hit her. Even after all these years, all the insane, unsubstantiated assumptions we’ve heard, my first instinct was to jump over the counter and hurt her; it never goes away. It breaks my heart that people look at him, my gentle, smiling, beautiful brother thinking that he is dangerous. I didn’t respond with “I’m sorry, he’s autistic”, I just explained that he was excited because it was crisps and iced tea day. She went on to speak to him softly and ask him about how his day was, which he completely ignored, but she tried and when we went in there again she remembered his name. It made me think, made me realise that it wasn’t an attack it was a ,misunderstandingautism-children-1-68-001, an ignorant comment made in passing with no harm or insult intended. But when you’ve had people yelling at your brother on the plane to quiet down, throwing him out of supermarkets because he was rearranging chocolates, grabbing children and dragging them away from him, pinching him or touching him just to agitate him and then refuse it and blame it on Autism, when you have teachers threatening to call the police on him – that is your go-to reaction.

When I read stories like the above, I feel the fury of Faruk Ali’s family; I feel the devastation of Andrew’s mother; I feel the paralysing helplessness that Josh’s dad felt; I feel the fear the 16-year old boy felt when he was being dragged across the floor by his hair. I feel it because we have all, at one point or another, been in a situation where our children were victims of ignorant behaviour.

“Control your child”, “What is he doing?”, “Can you stop screaming?”, “Make him stop”, “Is he dangerous?”, “What’s wrong with him?” the list goes on.

Helping with rubbish collection was something he did every Thursday, it was his routine. It probably soothed him in a way, to get rid of rubbish for whatever reason be it cleanliness or to get the off the pavement; it made him happy.  His weekly routine was disrupted by two police officers who decided he seemed suspicious.

Josh, was pinned down, handcuffed and terrified by police in 2008 for “refusing” to leave a swimming pool; he became transfixed with the water, he didn’t want to go. Instead of getting his carers to help the police decided violence was the way to go. Even if he wasn’t on the spectrum, is that the way you want your officers to react to children? His treatment was found inhuman and degrading; “But when they brought him home, he ran upstairs and crouched in a corner, sobbing uncontrollably. He wouldn’t sleep for nights. As a parent, that tears you apart“. It tears me apart, I gasp for air just reading it. It haunts me that this might happen to my brother who loves swimming too, and like a lot of children on the spectrum, he sometimes gets stuck in places, in the movement of the water, the sound of a machine, the feeling of something and has trouble moving on. It gives me nightmares that I might not be there to stand up for him; that even if I am, I probably won’t get to him in time; I probably won’t have the words to explain myself – I’ll just attack.

We are very much aware of the level of fear and ignorance of which the general public is capable of. But we fight so hard, and our kids do too, that when we encounter it, it can turn into a violent defence. Behaving “oddly” or “weirdly” can turn a look into a stare, finger-pointing to an attack and whispering into conspiracy, it can turn a comment into an assault – that’s terrifying for us.

Andrew Young’s mother is someone I thought about for weeks. He had Asperger’s syndrome and was killed by a single punch after pointing out to someone that they shouldn’t cycle on the pavement because it was dangerous. Andrew died because he thought it was important to follow rules; he died because his killer thought he was menacing; he died because we live in a society that encourages violence and ignorance, a society that nurtures subconscious insecurities and a false sense of entitlement and makes our nightmares came true. He was sentenced to 4 1/2 years in prison; message sent?

You think its stating the obvious when we say autistic people behave differently.

We need to say it;

We need to repeat ourselves over and over again because we need it to reach as many people as possible;

We need to make people aware that Autism isn’t a disease;

We need people to learn about it because we don’t have a cure yet;

We need people to understand more about it because you will come across someone on the spectrum sooner or later and it might be our son, our daughter, our brother.

I could keep listing cases. But I think we need to focus on police training, academic training for identifying someone with a disability, or a mental illness; this isn’t a problem just for people with Autism. Authorities need to be sensitive and educated enough to deal with disabled people on a day to day basis. Schools need to educate the society of tomorrow about acceptance; is it that absurd?

Shine light on discrimination against the disabled, institutional racism and the victim-blaming of sexual assaults; not just by police, but by civilians as well. What brighter light to shine than that of education?

We need you.

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Blue month

Autism awareness month is upon us.

I haven’t written in months because I’ve been trying to start my Legal Practice Course in September found out on Monday that I could, which reminded me of the reason I’ve been trying to get this done for the last couple of years. – Chris. I’ve been so wrapped up in trying to follow through with my plans that I lost track of why I was so keen on making them work.

I’ll start off this month with something more general; so what is autism? I found this “easy read” on autism.org.uk by the National Autistic Society.

Fact 1: There are many people with autism in England, Scotland, Wales and Northern Ireland. More than 1 out of every 100 people has autism – No. 1 in 58 people are on the spectrum in the UK. 1 in 68 children and 1 in 42 boys in the US. A 2012 review of global prevalence estimates of autism spectrum disorders found a median of 62 cases per 10,000 people.(Elsabbagh M, Divan G, Yun-Joo Koh YJ et al.. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012;5(3):160–79.)

Fact 2: Autism lasts for all of a person’s life. But they can still do a lot of things and learn a lot of skills. Yes. There is no identifiable cause for autism, or a ‘cure’. There is no magic potion, but there is hard work, mountains of patience, love, understanding, education and treatments available that will make a difference. No one understands the significance of a minor behavioural change or reaction like people that live with autism do. There’s speech and language therapy, oxygen therapy, social skills therapy, occupational therapy, specialised diets, classes, case studies, applied behaviour analysis and structured teaching just to name a few. The first time they communicate, the first time they accept a small change, the first time they try something new makes all of this hard work worth it. But most of all, is having a strong support system, a group of people or an individual that is dedicated to them, their well-being and progress. Chris went from throwing tantrum in the supermarket and throwing himself on the floor to a young teen who we can have a conversation with about what he wants, what we want and compromise; most of the time.

Fact 4: They find it difficult to tell people what they need, and how they feel. Yes, but there are many different ways to tackle this. With Chris, we started communicating with him through pictures at first. So, we had a picture of every single thing in our house. He wanted water? Picture. He wanted an apple? Picture. He wanted to play on the computer? Picture. He wanted a specific person? Picture. We had pictures of different facial expressions and feelings which he would use to express himself. Then when he was learning words, we attached words to the pictures until we got to the point where we didn’t need pictures. Chris’ case is not always the case though. There are people on the spectrum that have little or no communication with their surroundings; pictures would still make life a bit easier. It’s work, time and effort but it’s worth it. The trouble with the spectrum is the fact that it is a spectrum. You cannot formulate a universal treatment for them. You cant even teach them in the same way; because every single of them is different.

Fact 5: They find it difficult to meet other people and to make new friends. No. Not because it cant be true, but because the statement generalises them and makes this sound like an autistic trait. I’ve met people on the spectrum that won’t even acknowledge you’re there, and people that will not leave your side as well as everything in between. The same goes for “They find it difficult to understand what other people think, and how they feel.” 

Fact 6: Autism is a hidden disability – you can’t always tell if someone has it. Yes. Because the spectrum is so wide and diverse, people can go through life having autism and not realising. When you’ve lived with it, and read everything you could get your hands on about it, it becomes easier to identify. It can be genetic, but not manifest itself in older generations unless you look for it. This also proves that people can live with autism, can work, can marry, can have children, be grandparents and lead a life without special support. Its in hidden signs that you get a peak of autism; like their annoyance when their schedule is changed, being adamant on using a specific brand or route and many more. I often hear people use the phrase “He’s so autistic about that”; they might be. Being autistic is linked to so many myths and misconceptions that the average person will think of a child throwing tantrums, not speaking or making “irregular” hand movements when thinking of autism. No; autism isn’t easy to diagnose or recognise.

Fact 7: Children with autism have been bullied at school. Yes. Why? Because of the wrong information being distributed to the public. Because we hear autistic and think Rain Man. Because we hear Aspergers and think Boston Legal. The saddest thing about this is that children with autism will be bullied by family members as well if they attend the same school. Peer pressure and lack of understanding is literally making their lives difficult. It traumatises them, could make them aggressive or make them seclude themselves.

My experience with the education system and bullying will need a post of its own.

So, in aid of raising awareness for autism this month keep in mind that: that kid on the plane won’t stop crying despite its parents every effort; that teen in the supermarket that stacks shelves so neatly; that adult that skips and hops on the street; they could all be on the spectrum, don’t judge, understand.

Educate yourselves about Autism.