0

Hear me roar (about autism): 2013-2014

I am saying goodbye to my 20s this year and will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus – and it hosts my brother. 

To donate please follow this link and use the hashtag #30smiles

After my graduation I was a bit lost. I didn’t know if I wanted to pursue a career in law, I isolated my self and spent most of my days on the couch or in bed. I had decided not to return home (to Cyprus) all the pursuit of happiness and love. Only, after three years of living away from home I still wasn’t any wiser re the happiness and completely lost about the love bit. One gloomy day, I was re re watching an old series when an episode about writing spoke to me. Coincidentally, I had a little run-in with blog writing at a temp job where I wrote a post about unemployment and the woes of being a law graduate in the state of today’s economy. The process, as well as the response, made me think this was destiny (I believed in destiny when I was 22, just like you did). So, I got out of bed and did some research. Ok I sat up in bed and did some research.

The blog tips I got from various internet sources, sitcoms and friends were “Be yourself”, “Spell check” and “Pick a theme, write about something you’re passionate about” – so what was I passionate about? Looking back now, it was so obvious and I don’t know why it took that long to find the answer. I was still learning about myself and crawling my way out of my own personal dark ages for the previous ten years so I had to dig deep and shed all the layers and masks I had on. One night, I was Skyping home and Christos was being a tiger on camera. After that I spoke to dad about the issues he was having at school. I hung up, cried and realised I’m passionate about him and his future. Destiny (i thought) struck again when I read a guest blog article on BBC about how autistic children are presented with special jargon phrases. Mark Neary captured it completely; it made me laugh out loud and at the same time gave me the courage to create this page and write my first post .

199123_10150167935090030_1697873_n (1)The next two years where a blur. The blog took off in a way that I never expected and so did I. I had so much to say, share, relive, consider, reflect on and learn. Writing all this down made me cry every time. Suddenly, in two years I went from re re watching series in bed and avoiding my feelings to advocating for rights in Canada, Australia, France, the UK and writing articles about us in Greek, writing to MPs and governments around the world. I was approached by autism charities, organisations, radio stations, TV stations about my story (links to articles under Published tab on main page). There was no hiding anymore, no masks.

Writing became a regular thing. It got me out of bed, it made me think, it made me angry, it made me change things and perceptions around me. I had found my voice and the roar I had been suppressing was bursting out of me. My life was filled with people from all around the world who were going through the same thing I was, who wanted guidance, help or advice. People who had just gotten a diagnosis, or who didn’t know which therapy to go for, or parents who worried about how the siblings of the kid with autism would be affected. Writing about autism brought me the happiness I was looking for and it made me look at me in a different way. I knew so much more than I gave myself credit for. I had so much to give and the sadness and anger I felt transformed into inspiration and were channelled into this blog – which made a difference in other peoples’ lives but, perhaps more importantly it mended my ties with my family, and myself. I learned so much about myself through writing about Christos – yet another gift he has given me.

I published 52 posts on the blog in 2013/2014 and, today, this is my 201st post. On the second day of 2020 I won’t set any resolutions because it doesn’t matter what you think you want to do or what is expected of you – what you are is already you. So I am grateful for transformation my brother inspired in the last 21 years, I am thankful for all the friends we have around the world through this blog and I am more inspired than ever to continue advocating for this cause.

I hope you will join me.

81516919_622859898450805_1391874900632797184_n

0

The girl with the Dora mask: 2011-2012

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus.

For more information: Smiling September

To donate please follow this link and use the hashtag #30smiles

While the turmoils at home seemed to be neverending I thought that being away from it meant I was indestructible. I had started an LLM in a new city and it was intoxicating. In those years (my social years) I made friends for life, lost a few on the way but most importantly I found a way to not be me and it felt great. I was masking my sorrow with a mask no one knew about – not even me. Needless to say my social years didn’t last long – i’m a house cat at heart. So after too many jagerbombs, heartbreaks and too many late nights I buckled down, did the work and got my first masters. It felt like an accomplishment but not my own.

After this, I made the decision to stay in the UK permanently. It may sound selfish but I could never find out who I was in Cyprus; I was a child of divorce, sister to a boy with autism, wanted a career in law, but I didn’t even know basic things about myself; what food I liked, what music moved me or even how I liked to dress. Up until that point I was just faking being me trying to be the me I thought I was supposed to be.

So I cut ties with with all that, got a job and started working towards getting a training contract.

Today: I look at my brother who has lived his life so openly. No masks, no pretending – he has known who he is since the start. Who knows what mask he would be forced to wear if he was like us? What he would be forced to suppress/do just to fit in. So today, after years of mistakes and learning from my brother, i can proudly stand next to him without a mask. I don’t have peppers in my food because I don’t enjoy them, i don’t like horrors/thrillers, i prefer rain to sunshine and Pizza Hut to Dominos (that’s right), and I’d rather stay in all day and hang out with my bro (even though we annoy eachother) than go out into the world without him.

 

0

Then and now: 2010

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus.

For more information: Smiling September

To donate please follow this link and use the hashtag #30smiles

Hindsight is an incredible feeling isn’t it? I look back at who I was then and I can see clearly how I got to where I am. My last decade plays like a film in front of my eyes and at centre stage is Christos because there is nothing I am more proud of in life that to be his other half. To live up to his expectations every day, to earn and keep his trust, to walk beside him in life.

It wasn’t always my priority though. Even though he was the driving force behind my decision to move to the UK to study, my teens are a blur for the most part. See,  we all have ways of getting by and mine is that I block out parts of life/the past I don’t want to remember.

I was lost, looking for meaning, love, somewhere to belong and in a constant battle between the need to be selfish and take care of me and feeling guilty for not being selfless. But with the bad there was good and I’ll try to focus on those. Through all the family drama, heartbreak and late nights that consumed my 2010 there was light.

This picture is from Halloween 2010. Because, I don’t have any other pictures of me and my brother that year. It was a selfish year and but looking back, 10 years later, it had to be. There’s a part of my heart that will always be hollow with all the moments of Christo’s life I missed out on before he outgrew us all. But like any family unit, we have to take care of ourselves before we can take care of each other – we just didn’t know back then. Mum took him to a parade in Cyprus and he dressed as Woody from Toy Story, it was one of his favourite animation films. We watched it over and over and over, and knew all the words. I remember him asking to watch it and when Sid would come up he would hide. 

This year? We get to spend the entire day together in Sri Lanka, making memories and cementing our bond. The difference is that this is a selfless year. We have both overcome our individual obstacles and experiences that weighed us down – Christos has moved to a new school and is tackling issues bigger than him or us. He has paved the way for other families of kids and adults with autism to look forward to a future which doesn’t condemn them to sit on the sidelines of a society that doesn’t have money or time to invest in their abilities.

I’m not going to lie and say it’s been smooth sailing because we had a tough day yesterday. I travelled through 5 time zones in 3 days and it took its toll. The repetition of the routine and his need for everything to be the same is exhausting at the best of times. But today, we are both rested, we have a plan and we are back on track. 

3

Smiling September

I think September is a great month because it starts off the end of a calendar year. While it signals the end of summer, the beginning of autumn is the start of a new school year, the countdown to many widely celebrated holidays, apple pies, leaves turning all sorts of beautiful colours and in general it is a preparation for new beginnings.

Having just finished yet another arrivals week at my place of work, I caught myself being a bit resentful this year. So many children are starting school, university, college etc because the right to education is reflected in international law in Article 26 of the Universal Declaration of Human Rights and Articles 13 and 14 of the International Covenant on Economic, Social and Cultural Rights. Article 26 states:

“Everyone has the right to education. Education shall be free, at least in the elementary and fundamental stages. Elementary education shall be compulsory. Technical and professional education shall be made generally available and higher education shall be equally accessible to all on the basis of merit. Education shall be directed to the full development of the human personality and to the strengthening of respect for human rights and fundamental freedoms.”

The Cypriot government, while responsible in making education accessible and available for all, has failed to understand autism and to provide establishments which can cater to adults with autism living in the Cypriot society. Hence, it is left to autism societies, organisations and groups to create their own places of education and development of character. But what happens to areas where such an organisation doesn’t exist? Or it doesn’t have the funds?

Adults with autism over 21 years old in the Famagusta area are left to their own (and their family’s) devices. Parents are faced with an impossible choice of whether to provide privately funded development opportunities and care, or to cease education  and/or to admit these persons to centres which bear a label stating “for people with disabilities”. Such abstract grouping is not only impractical but it is a disadvantage to all persons – despite abilities. While we are calling for a specialised unit/centre for adults with autism it is important to understand that the aim is not segregation – it is safe specialisation. So, how does the Cypriot government expect the same centres that houses for the elderly to cater for Downs, autism and learning disabilities? Or for parents and family to arrange transfer to the nearest autism facility without additional funds while providing for the family?

Ignorance – is why our kids are not included in the planning stages for education, social care etc – the inability and unwillingness to understanding these individuals and the arrogance in not seeing them as individuals.

Grouping them together and imposing a further financial burden onto the families is a manifestation of how we mistreat people with abilities that do not “fit” into the preconceived notions of “mainstream”. Denying them inclusivity from the moment they don’t meet the made up milestones that dictate our education system is only the beginning. Our society continues to outcast them in employment, relationships, friendships, social ‘norms’ and  education. This is how the SMILE Project was born.

The Autism Support Famagusta organisation was formed by parents and friends of people with Autism Spectrum Conditions in the Famagusta area. Our kids grew up and had nowhere to go. So we stepped up and created a place for them in a world that tells them they don’t have one unless they comply. The members of our organisation work tirelessly, incessantly and face every obstacle because they want to provide a safe place for their children where they can grow, develop their character and claim their rights just like every one else. Thankfully there are people, businesses and municipalities in Cyprus that contribute to our work, keep us going and support us. There are amazing people that apply to spend time and educate our kids so that they can cultivate their qualities, skills and provide them with new experiences. Every person involved in the SMILE project was once just like you. None of us knew autism until it burst into our lives. But we started learning, growing, getting stronger and stumbling the whole way here – to this moment when action was needed yet again. So here we are, getting back up and marching forward, hoping that you will be a helping hand (or smile) by our side. 69027189_359207548341415_839973041910841344_n

This September remember that the things we take for granted aren’t granted to everyone. All over the world there are people that have to fight for the right to education either because of lack of funding, lack of space, materials or study requirements. All over the world the reason people are deprived of this right is because of their governments. What can you do? Simply learn about us, our organisation or a society near you. It may be that you know a person with autism in your school , your work, your network, your neighbourhood so find them and talk about it. Open up your world to include others and be kind because knowledge is power. If you want to do more you can donate, send supplies and even! take a volunteering holiday and help organisations build schools in different places around the world. There is always something we can do. Always.

Throughout autumn term I will write more and more about the SMILE project so that we can show you what we are doing and how we are giving our kids education and support that they should have had.

Our page for donations can be found here.

0

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.

img_8075

1

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.

42748877_724721124557754_6401491820877971456_n

0

21 and Atypical: The SMILE Project

64582350_2087828768006568_1085529915794653184_oThe SMILE Project is a culmination of the fears, determination and strength of the autism families in the Famagusta area in Cyprus. It was born out of fear of what will happen to our adults with autism who require care. It was created with determination to establish a safe, educational space for our kids where the state has failed. It is opening today because of the fearlessness and strength of those involved. Those who have done the manual work, donating time and money to ensure that our gentle giants do not suffer the consequences of a state that doesn’t understand them. Today, 19th June at 7:30pm in Paralimni, we open our doors to 3 young adults who pave the way to a better future for all adults with autism in Cyprus.

The Smile Project will be based in the Famagusta Area (Paralimni) and will provide day-care services for young autistic adults of 21 years old and over. 64912747_2382131665339646_8103174948933074944_nIn every autism family, there comes that dreaded time where you have to think of what’s next. Our families and Autism Support Famagusta powered through obstacles, lack of funding and the absence of support to imagine what would happen after State school comes to an end. We, the families, know that there is no provision or services with specialised staffing for young adults with autism in our area – so we needed to act.

The future of our children is a concern for all parents.
Who will take care of them?
Where will he/she live?
Will they be safe and have a quality of life when we are no longer here?

The SMILE project is a massive achievement and a stepping stone. The ultimate goal will be a 24-hour care centre with overnight stay but also a day care provision for adults on the autism spectrum. The centre will offer sensory sensitive activities tailored to each child, music therapy, speech therapy, arts and crafts etc.

Our children’s learning will not stop. We are working together towards the same goal which is to provide support to families with children on the autism spectrum.

As a group, we are blessed to have had the support of the Municipality of Ayia Napa, the Mayor, local councillors and staff every step of the way. We are hopeful and confident that other Municipalities in Cyprus will embrace and support us to pave the way to a brighter future for autism in our beautiful island.

So.. join us – all you have to do is smile.

If you want to help:

Donate here https://www.autismsupportfamagusta.com/donate-index-impact