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An autism sister watching Atypical Season 2, Episode 2

I’m only going to talk about Casey (the sister) in this post. I want you to see her the way I see her.  I want you to see through her to all the sisters out there.

42877323_986385234880394_644448336547414016_nThe sister at home – Champion. She is the neurotypical child. She is the one that outed her mum. She is a good student, and a sought after athlete.

She is attuned with her surroundings and the needs of every member of her family. She blames herself when the marriage is put in jeopardy, when Sam finds out and tries to keep normalcy when Sam needs it the most. She takes on responsibilities no one has assigned her with. No one in her family expects her to be all these things, to think of all the implications and consequences. Her thoughts and needs take a back seat because she is the neurotypical, she is the one that has to be there while the parents sort out their own stuff. There’s no time for her emotional distress because she has to step up for every other member in their family. Plus, no one asked how she was dealing with her parent’s problems or in her new school – her champion mask is impenetrable.

The sister at old school – Shield: Everyone knows that you do not mess with Casey and Sam. Sam continues coping at school without Casey because of the foundations she has laid in previous years. It is expected that there will be repercussions when it comes to Sam, and no one wants to take that risk with her. I’m getting ahead of myself but in Episode 3, a fellow pupil accidentally does something to Sam and she says to him “Tell Casey I didn’t mean it”. Her shield mask is impactful.

The sister at new school – Timid. We haven’t seen this side of Casey yet. Mostly because she is so assertive in all her other roles. She is outside her comfort-zone. No one knows her as Sam’s sister here – they know her as an athlete, they will get to know her as Casey. It’s hard for her to readjust and define herself as her own person. She resorts to funny remarks and sarcasm almost every opportunity she gets while she is at the new school. Like I mentioned above, no one in her family has asked how her first few days at school have been – not on screen anyway. That’s not something that just hasn’t been addressed in the script, that’s how it really is in life.

On her first day she had a brought prepared lunch from home, on her second day she has to survive on peanuts and on the third day someone offers her a helping hand (whether it’s a good idea or not is irrelevant). She grabs it because she needs to be taken care of. Do you see how inspired this analogy is? It’s a representation of all the crap she has to deal with in the last few days narrated in food, the thing that sustains us.

Instead of crumbling she picks herself up and watches the penguin cam with her brother. She doesn’t even see herself as being in need of support or comfort. She deals and returns to what’s important. She doesn’t take the compliment from her dad calling her a ‘good kid’ because the things she does, and the support she offers comes is who she is. It’s not fake, it’s not something she has to think of; it’s not for a reward. She has to find her Casey mask.

*End*

As an autism sister, it’s was impossible for me to define myself or to get to know myself when i was growing up. Family break ups and autism drowned out my noise. I never had the chance to sit down and think “Right, this is what I want; this is what I like; this is what I don’t like”. My teenage years were me moulding myself to what I thought my family needed.

I moved away because I thought that’s what I needed to do so I could offer my brother the best future I could. I did law because I thought it would make me financially stable for my brother. I did an MA because I thought that’s what was expected of me. And my relationships and friendships? Well.

In the last two years, I have gotten to know myself . I spend more time with me, I know what films I like – not because my friends like them. I know what music I want to listen to – not because it’s popular. I know what books I like to read – not because they’re bestsellers. I used to drink beer because we were at a pub or eat beef because steak is  ‘the best’. I’d go out every time people had plans without any regard to what I wanted, I’d watch all the blockbusters, listen to all the hits and pretend that I didn’t have a care in the world because no one likes a downer.

Now I know that I don’t want to be a solicitor, I don’t like beef, I can tell people I disagree without the crippling fear that they won’t like me anymore. 12 years down the line, I bagged myself a blind date with me.

It’s hard for any teen to figure out who they are. Add a break up and autism in the mix and things get even worse.

When you look at Casey, or an autism family, look beyond the autism cloak. They are still humans, flawed, broken, tired, brave, and sometimes inspirational humans. When you watch Atypical, read between the scripted lines.

Casey is the single most inspiring female character I have watched in the last few years. I hope you see her through my eyes and that you let her teach you about autism, family and love.

After the trauma of the first episode, i’m ready to binge. I’ll let you know when i come up for air. 😊

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An autism sister watching Atypical: Season 2, Episode 1

FYI: This is what I thought of Atypical Season 1.

“There is a hole in the Antarctic the size of Maine.  It’s … the result of hot water bubbling under the ice. Invisible, but destroying the ice sheets from under the surface.”

I am completely enamored with this portrayal of an autism family unit – For two reasons.

42748877_724721124557754_6401491820877971456_nReason 1. [the hole is] the result of hot water bubbling under the ice. Invisible, but destroying the ice sheets from under the surface.

Chris and I were raised in a loving family unit for many years before it broke down. The way the four of us handled the break down was by letting the water boil and strip us, one sheet at a time. Throughout that time, we  treated each other in different ways – not always pleasant. We never pretended things were okay for Christos’ sake, and if we did we were really bad at it. See, autism doesn’t mean that it’s okay to lie to someone you love. Christos has always been treated as a son, a brother first and an autistic child/adult second. In times of chaos we kept the routine. In times of turmoil we treated him the same. We were all a constant presence for him, even when we didn’t want to be in each others company.

As a sibling I have tried to protect him, as a sibling to an autistic brother I was not ready. It’s funny to watch a version of my life on screen, with all the things I thought but never said. To imagine what Christos would have said if he was able to express himself. Despite not telling us what he thought, he was never treated as naive and we have never been under any illusion about his profound ability to understand us and comfort us then and now. He shows me time and time again that he loves me, even though we have scratched, hit and screamed at each other more times than I can remember.

Sure, to outsiders I might look like a jerk for teasing him, pinching him and deliberately making him angry – but, he is my brother first and an autism adult second. I deliberately misplace his things, I try to get away with not washing the dishes, not throwing away an empty bottle, singing in the car, even though I know it will annoy him. What kind of big sister would I be if I didn’t annoy my little brother?

Episode 1 captured the bubbling so well. It was like looking in a mirror to the past – that’s the best way I can think of describing it.

Reason 2. There is a hole in the Antarctic the size of Maine. The hole is always there, whether we acknowledge it or not, we lost something palpable, something that can never be replaced, it can never be the same. Even if the water was frozen again, it wouldn’t be the same water that turned to ice. Nevertheless, a hole doesn’t mean emptiness, it doesn’t mean darkness.

The sheets melted away and each one brought us closer to surface. We were no longer solid, we were no longer boldly assuming that we could stand firm against anything.  Instead, we became fluid – constantly changing, silently powerful, adaptable and immense.

Our relationships became a polynya, which is much stronger, deeper and more mysterious than ice.

*End*

I have been avoiding watching Atypical Season 2 because of how many people told me how good it is and that I have to watch it. It is good. It is !so worth watching. It is also agony to empathise, to let every silence turn into tears, to feel every twitch, every growl of the soul – and I’m only on episode 1.

Give it a chance. Look for the small things, like the little notes around the house, positioning, the routine, the things that are left unsaid.

Look for the bubbles.

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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.