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Sibling Dance

The unusually hot UK summer has come to an end  on Christos’ last day in the UK – and he has just finished shopping in Oxford Street, London.

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The last week has been full of giggles and pleasant surprises. I am constantly amazed by how he has grown into a beautiful, mature adult with autism. And I am so grateful to our family for creating and sustaining this human who I can call my soulmate.

His basic schedule is simple – wake up, get dressed, eat, talk about when we will eat again, play his game boy, eat, talk about when he will snack, snack, talk about when he will eat again, talk about the schedule for the next day, talk about what we will eat the next day, eat, shower, tea, sleep. Anything out of this routine is discussed and it fits into the rest of the programme once agreed upon.

The fear of transport, restaurants and public spaces is not as big of an issue as it used to be. He will repeat what he wants to eat and drink and then he will patiently wait for the rest to finish. He adapts to change in plans and new environments like a pro. Like I said in my previous post it’s just the rest of us that stress out about all the above.

His maturity and adaptiveness is a credit to my mum, my dad and our grandparents. It is a credit to all our family how they love him, know him and praise him. The autism discourse used to focus only on the person on the spectrum, however it is their support system which moulds them and creates the adults that go off into society. We are seeing more and more studies and representation of parents and siblings of people on the autism spectrum and it would be naive not to include them in our journey to understanding autism.

Thing about soulmates is that we signed up to do this dance together even before we were born. If I had a choice now, 20 years later and knowing all the things I know, I would choose to spend all my lifetimes with him.

If you are into Netflix, Atypical Season 2 airs on Friday 07.09.2018. You can read my take on it here. If you’re in the UK, The A word delves deep into the family unit, together and individually. Each person is portrayed as a person. You can read my review here.

Tomorrow he travels back to Cyprus to resume the sleep, eat, repeat routine on home turf. Wish him a safe journey back and read something new about autism if you get a mo. I’ve gathered some articles below:

Schools ‘exclude autistic pupils through lack of understanding’

Bricks for autism: how LEGO-based therapy can help children

Autism: ‘If only I knew then what I know now’: Special school teacher Siobhan Barnett shares what working with autistic students has taught her about autism

Autism – five signs of autism spectrum disorder to look out for in children

‘Taboo’ autism seen as ‘disease’ in ethnic communities

How incy-wincy spider could show if your child is autistic

‘Autism and Learning Disability’ To Be A Priority in NHS England’s Upcoming 10 Year Plan

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Summer Love

This summer has been a tad amazing. Great weather, amazing friends, trips to remember, drama for weeks and a ton of lols. On the penultimate day of summer 2018 my 2018 summer secures a place in the Hall of Summers with a visit from my brother.

He arrived in the UK on Tuesday and will spend the next four days with me in Canterbury/London along with my mum and yiayia (grandma).

So far, their trip has been eventful to say the least.

Larnaca airport prides itself for being an airport for everyone. They have hosted days with people on the spectrum to experience the process of arrival, security checks, boarding and the aircraft. They have special paraphernalia to identify persons who require special assistance and priority service. In fact, ACI Europe awarded Larnaca International Airport with the first prize, among 500 other European airports from 45 states, in the category of “Most Accessible Airport for disabled persons and persons with reduced mobility.

Unfortunately, my family had to wait for an hour and a half while COBALT airlines found them three seats together – even though my brother had priority. This lead to them boarding the plane last. I assume that making a 20 year old autistic adult wait at check in for an hour and a half is not part of their accessibility offerings.

However, we recognise the efforts made by Hermes and we look forward to the smoothing out of such issues in the future.

We should also recognise that my brother flies quite often and therefore is familiar with airports. We are unable to fathom what would have happened if this was experienced by another person with autism.

Heathrow accessibility support on the other hand is incredible. They are prepared, organised, and trained to help. They act with professionalism and sympathy to people with hidden disabilities and the elderly. Due to Heathrow’s amazing partnerships with Autism West Midlands, the National Autistic Society and Autism Alliance they are ready, willing and able to assist travelers with cognitive disabilities and offer some comfort to their families.

40371016_479740792503127_4261342490960855040_nI must also mention Qatar’s accessibility support which we experienced in December while we were travelling back from Sri Lanka on our own. We were met at the aircraft door and we were accompanied to the door of our connecting flight. We were so comfortable that we didn’t even notice that we were there for 2 hours. This shouldn’t be a surprise since in 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to a day dedicated to raising awareness about ASD across the world.

I hope that Larnaca and Cobalt will continue to learn and adapt, and one day follow the footsteps of these airports and become inclusive and sympathetic to people who require assistance.

He has adapted to the Underground, national rail and bus journeys better than I have after 10 years of living in the UK. I cannot put into words how proud I am of this boy, because he makes everything seem so easy. That’s the thing about autism – you have to know about it to know about it. And that’s why we are moved to tears when international airports, strangers and society make sure that our kids are looked after.

Of course even though my brother is cool AF, under the calmness of our tough exterior we are consumed by hurricanes because we know that the circumstances are not easy. That is why we worry ourselves sick whenever he is on the move, we don’t eat until he’s finished eating and we don’t sleep until he’s dreaming.

But, any autism family will tell you that stress, hunger and insomnia are a small price to pay for knowing your soulmate.

I will keep you updated on our Big Fat Cypriot Weekend which will be the perfect end to the perfect summer.

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The Hominidae Family

I read a book recently called Sapiens: A Brief History of Humankind – buy it immediately – and it changed. my. life. It made the world make a little bit of sense.

Yuval Noah Harari explains  how biology sets our limits and how culture shapes what happens within those bounds. He narrates humankind from the creation of the Homo genos to the ultimate dominance of the Sapiens species.

What is especially interesting is that we are a species of the genus Homo, which is the  genus of the family Hominidae (order Primates). Our characteristics include: large cranial capacity, limb structure adapted to a habitual erect posture and a bipedal gait, well-developed and fully opposable thumbs, hands capable of power and precision grips, and the ability to make standardized precision tools, using one tool to make another. For example, the biological family Felidae is a lineage of carnivorans colloquially referred to as cats. The species included in this family are panthers, cats, tigers etc.

So!

Sapiens (us) are a species of Hominidae together with the (allegendly) extinct species H. habilis, H. erectus, and H. heidelbergensis as well as the Neanderthals (H. neanderthalensis), the early form of Homo sapiens called Cro-Magnon, and the enigmatic H. naledi, which may be the oldest known member of the genus.

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In fact, Sapiens and Neanderthals, H. erectus etc are likely to have existed in the world at the same time. We evolved at the same time as them. Neanderthal anatomy differed from modern humans in that they had a more robust build and distinctive morphological features including shorter limb proportions, a wider, barrel-shaped rib cage, a reduced chin, sloping forehead, and a large nose.

In 2010  a study was published which determined that Neanderthal DNA is 99.7 percent identical to modern human DNA and researchers of the Neanderthal Genome Project found that 2.5 percent of an average non-African human’s genome is made up of Neanderthal DNA. Which means that at some point, our species interbred and that Caucasians are more likely to have Neanderthal DNA.

From this study and further genotyping undertaken, Dannemann and Kelso published  “The contribution of Neanderthals to phenotypic variation in modern humans,” Am J Hum Genet, 101:1-12, 2017. They narrowed the sample to include 112,338 individuals with white European ancestry (whose genomes contain Neanderthal DNA), and used these data to tease out which traits are influenced by Neanderthal genetic variants. The traits they identified included those that affect hair color, skin color, skin tanning and burning, sleeping patterns, mood, and tobacco use. For example, being a self-described night owl and being prone to daytime napping were both traits positively influenced by Neanderthal variants, as were loneliness, low mood, and smoking. Genetic loci associated with having red hair were found to be devoid of Neanderthal variants, suggesting red-headed Neanderthals were either rare or non-existent. The new study also supports Capra and colleagues’ previous observations that Neanderthal variants are associated with sun-induced skin lesions, mood disorders, and smoking.”

Next time you’re tempted to call someone a Neanderthal, you might want to take a look in the mirror.

What’s the point of this? Basically that we know nothing about who we are, what makes us. The only reason Sapiens went on to dominate the world was because of their unprecedented congnitive ability to imagine, and to believe in their imagination. They went on to imagine new ways to hunt, gather, cook. They imagined states, countries, borders. They imagined religion, human rights, corporations and money.

For millenia, our ancestors imagined things that control our lives, that give us the ability to research, understand and explain where we came from. Their imagination created the world you live in today.

And yet at the cognitive peak of our species, our generations are unable to create a world where we are all accepted because we can’t imagine people with disabilities living up to the culture and demands our society has conjured up.

At the core, we are simply a family that has different traits. If this is fact – why is it so hard to imagine?

In other science news:

Remember when we talked about the gut? Well, you may remember that the gut has always been under observation in autism study.

The Biology of Autism: Where Marilyn Le Breton explained that “When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. 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.”

Hope in Poo? In 2017, a study was published in the Microbiome Journal (here) 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.

Building on the research above, new findings now have reinforced the theory that some autism symptoms – including behavioral symptoms – can be manipulated with FMT. In fact, the results appear to be long-lasting, continuing to have an effect even years after the fecal transplant.

The researchers presented a follow-up to this study at the Beneficial Microbes Conference this month. According to the reports, the scores on a gastrointestinal-symptom scale remained over 60% better before the transplants through maintaining beneficial bacteria gained from the transplant.

This breakthrough could be groundbreaking for the autism community. If we can understand the causes/origins of autism we can work towards mitigating effects and implementing precautionary tests. This isn’t a cure but it’s hope.

Happy summer my humans!

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20

It’s May and I get to cry about my little brother turning 20.

31646765_10156283477410030_4157660885218754560_nI was in Cyprus 2 weeks ago and everywhere I went people talked about how good he is, how handsome, how they miss him and how much they love him. You might think that me writing this is what makes the difference but it’s not. It’s all of my family and how they raised him, how they treat him, how they flaunt him and how much they love him. He has become someone people want to know, and want to know more about.

I took over his room while I was visiting. He didn’t barge into his room to wake me up before 8am even though I could hear him being awake from 7am. He didn’t tell me to fold my clothes, or pick up stuff off the floor of his room, even though the rest of the house had to be spotless. When I couldn’t find the honey – he showed me where it was. When I wanted to drink one of his juices he kissed me and gently took the juice away. When I wanted to watch something, he let me even though it was his time to watch cartoons. When I wanted to watch a DVD he set a time for me and him to watch it together, even though he has this thing about not watching DVDs unless the stars align.  He let me bite off bits of his food even though Christos doesn’t share food. He let me pinch his cheeks and chin repeatedly despite his sensory overload.  When we said goodbye at the airport he hugged me for one second longer, because he knew I would ask for it anyway. He knows I’m a guest and he lets me be one. He has allowed me to float in and out of his life for 10 years.

10 years.

I asked mum if she thought he knew I was his sister or whether he thought I was some girl who showed up 10 days a year to annoy him. She said I was crazy.

But I have lived in a different country for half his life. Yes, there are many things I can say to myself to make it sound ok but right now I am just a girl in a foreign land waiting for him to have another birthday – from which I’ll be absent.

So, I write a blog post instead of a card, I ask mum for pictures instead of skyping and I try even harder to be better. I think of the years I was there and how I was a part of his smiles, his laughter, his crying, his bedtime rituals, his repetitiveness, his speech therapy, his tantrums, his education, his homework, his first steps, his first words, his transition, his moves, his development. And I want, with all of my being, for that to be enough and for him to know that I am his sister.

20 is the theme of May but I don’t know why and I don’t know how I’m gonna pull it off. Let’s figure it out together.

In other, less gloomy, news it was an eventful Autism Awareness Month this year. Here are some interesting reads in case you missed them:

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April 2018: 2 Science Headlines

1/ Social pressure

A drug is being tested which claims to help people on the autism spectrum with social skills. Balovaptan, said drug, acts on receptors. Receptors are located on the outside of cells and communicate commands to the inside of the cell. There receptors receive a hormone called vasopressin, which is a hormone from the brain which influences social behavior. Balovaptan is designed to block a receptor of a specific vasopressin, which might be linked to social anxiety says Larry Young, professor of psychiatry at Emory University. Basically, the brain sends vasopressin to cell receptors and some of these hormones affect social behaviour. This drug might be able to prevent the hormones affecting social anxiety. Behavioural “symptoms” of autism can be identified (but not limited to) as trouble in communication and interaction.

The idea of using drugs to change characteristics of people on the autism spectrum to “fit in” to a neurotypical society is worrying. That being said, it is important that such medication is available for the safety of the people that need them and for the mental well-being of the people that make the decision to take them.

We all have some form of social anxiety. Whether its tapping fingers, playing with your hair, flapping arms or other forms of stimming. People on the spectrum are under pressure to behave neurotypically to avoid bullying, rejection, discrimination – referred to as ‘masking’. This may be a solution for some but there’s a better one – it starts with ‘aware’ and ends with ‘ness’.

2/ Genes

Remember the MSSNG project which highlighted “an additional 18 gene variations linked to the development of ASD. Nature Neuroscience Journal, published a report on this project which found that the 18 newly-identified autism genes can be instrumental in understanding the pathways in the brain that affect how cells ‘talk’ to each other.” (The Biology of Autism)?

Remember the research published by Princeton University and Simons Foundation researchers where they analysed the human genome to try and predict which genes are likely to cause autism? They had linked about 2,500 genes to autism; we have an approximate total of 24,000. (Mr Autastic)

WELL: Researchers have found alterations of the gene thousand and one amino-acid kinase 2, known as TAOK2, which is so much fun to say out loud. The alterations found are thought to play a direct role in neurodevelopmental disorders, including autism.

Karun Singh, study co-author and researcher with McMaster’s Stem Cell and Cancer Research Institute said: “This is exciting because it focuses our research effort on the individual gene, saving us time and money as it will speed up the development of targeted therapeutics to this gene alone.”

img_6972Science is on its way to delivering answers to what causes autism. They are closer to finding out how to predict autism, and, as a result, closer to finding a way to prevent it. In the  meantime, it’s up to you to ask questions, to include to shatter stereotypes and to embrace the people around you.

 

 

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April 2018: 2 new facts

  1. In 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to today, a day dedicated to raising awareness about ASD across the world.
  2. Numbers published by the World Health Organisation show that approx 1 in 160 children are diagnosed with autism. That suggests that of the 7.2 billion people living on Earth, approx 45 million are diagnosed. Plus the lost generation and women that never received a diagnosis due to a variety of factors.

45 million! Autism is no longer a hidden disability.

Autism awareness is not confined to this day, or to this month. We fight for it every day to help educate people on how to better understand autistic people and lessen the stigma and discrimination that autistic people face in every day life. Awareness means that the community can identify and respect the autism spectrum. Awareness means that the financial burden families have to bear may be lessened with proper access to support and by making autism education and alternative therapies a mainstream issue.

Welcome to autism awareness month.

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The “Normal” Cult

29830733_10156190751535030_853762012_oIt’s autism awareness week if you hadn’t noticed & I read this article on BBC about women on the spectrum – It all made sense when we found out we were autistic . These women are teachers, PhD candidates, artists, comedians, psychologists and they are inspiring (& autistic).

About 700,000 people in the UK are on the autism spectrum, according to the National Autistic Society. That’s approx 1.05% of the UK population.

In a one-hour special for Channel 4, tonight 28 March 2018, trainee human rights lawyer Georgia Harper and artist Sam Ahern, who both have autism, aim to uncover the true face of autism in the UK today. I hope you’ll be watching.

Autism awareness isn’t just about the future of autism, it’s also about the past and present. It’s about every person who feels they don’t “fit in”, all the times it feels like everyone else was given a manual on life, a ‘lost generation’ of thousands of adults going through life without a diagnosis. Autism awareness is about informing, spreading knowledge, sharing stories, finding new ways, and removing the stigma imposed by a system that doesn’t understand.

Autism awareness isn’t spread only by those living with autism. It’s a plague – a good plague. Awareness is born out of love, it spreads with our voices and makes an impact with our actions. It starts with sharing a story with another mum, or with children asking questions, with major airports introducing measures to help passengers with autism, shops introducing ‘autism hours’ and employers investing in autism training for staff. All the milestones we have witnessed in the world in the 5 years started with a voice.

The biggest obstacle to understanding autism is the expectation to look ‘normal’, the imposition of being ‘neurotypical’ and the social bullying that makes us dismiss and disable anything outside this fictional realm of “normal-ness”. We are programmed to treat anything different differently but what happens when you can’t see the difference? We grow up judging books by their covers and learn to condemn them when the cover doesn’t match what we thought should be inside. You ask someone,”Why is it weird if someone won’t make eye contact?”. Unless it’s a cultural trait, no one can think of an answer except a variation of “It’s not normal”.

You see someone and they look ‘normal’, they speak ‘normalish’, their lives seem ‘normal’ – they have a PhD, or a job or a family and they fit in your category of ‘normal’. As soon as you find out they are on the spectrum your perception shifts. You think, “how? why? really?”.

Autism awareness aims to infiltrate and destroy the ‘normal’ cult we subscribe to. It wants to shatter illusions of what we are supposed to do, it wants to expand our horizons and adds new words to our dictionaries. Just like all the once outcasts of this made up and exclusive society of “normal” the autism awareness movement is working. One in 100 people in the UK are diagnosed with ASD, teachers and police officers are trained, there are groundbreaking findings in ASD research and major channels invest money in documentaries, series and autistic actors/presenters (or muppets).

Autism is becoming a regular headline and it all starts with a voice. April is Autism Awareness day/week/month: here are some things you can do to help – Until everyone understands ; Wear Blue ; 30 things to do in April .