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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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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.

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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: 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

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21 and Atypical: Steph’s Got Talent

You will remember that Stephanos loves the arts. Playing music, singing, drawing, painting, crafts etc. He uses his talent to express words and emotions in a different way – like a true artist!

Over the years, he has taken major steps in improving his skills through weekly lessons and “he will improve much more as he grows and has the potential for much more that what we give him credit for” his mum reminds us. He loves painting horses, having started with a basic drawing of the outline and then moved on to slowly adding the horse mane, the tail to eventually winning an Erasmus award for one of his paintings.

60342861_295902934633404_3523312190037688320_nA friend of the family was part of ESIPP and Erasmus: ESIPP stands for Equality and Social Inclusion Through Positive Parenting and aims to provide parents with accurate information, effective practical strategies and improving outcomes for individuals with autism and their families. Parental autism education has not been available everywhere in Europe and through the work undertaken and the findings in the project ESIPP has made key recommendations for policy makers. The ESIPP project was established to develop a locally appropriate Parent Education Programme (PEP) for families living with autism in three south-east European countries (Croatia, Cyprus and the North Macedonia). The project is led by the University of Northampton and includes eight other partner organisations from across Europe.

ESIPP asked for design submissions for the project logo. So the society rounded up about 15 paintings from the Famagusta area. The Autism Famagusta Support society runs a yearly summer school in Ayia Napa where the children who attend undertake a range of activities – and they always keep kids work. Stephanos was one of the first for Cyprus.

Nowadays, he has an art studio next to his home where he takes daily lessons and showcases his art. At School, Stephanos loves art class and creating things in woodworking lessons. While the equipment was usually left to be handled by the teachers, a couple of months ago Stephano’s mum was sent photos of his latest woodwork creations from school where he actually put together this wood placemat with hot glue alone.

Stephanos also paints most of the clay money boxes that we decorate and sell at events.

 

Currently, he is working on creating occasion cards as another way to promote Autism Support Famagusta, autism awareness and earn money from selling cards created with Stephano’s input. I’m already putting in my order so all you summer babies that I love so much will be getting a Steph card! While he doesn’t come up with the occasion designs all alone, he follows instructions and does all the drawing and colouring.

Every single one of you express yourselves in a different way – with emotions, physical strength, volume, writing, activism. Which means that, at the end of the day, the only thing we have in common is that we are all different.

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You can donate to our society here.