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An autism sister watching Atypical Season 2, Episodes 3-10

It took me a while to get through this season because it is so emotionally charged. It’s a bit too relatable for me.

Ultimately, I want you to watch it and see these 6 things.

1: In episode 3, Sam walks out of his class at some point due to sensory overload. The way he walks out reminded me of my brother. The eyes, the mouth twitching, the hand shaking, the urgency in his step. He walks out of that class as if his life depended on it. Sam has autism spectrum disorder. Keir Gilchrist, the actor, does not. Creating a single, accurate portrayal of living with ASD is impossible. Therefore, to create something relatable to as many people as you can you endeavour to make connections through different interpretations of ASD. It is a colossal credit to the people behind Atypical that Keir was able to remind little old me of my autistic brother in that scene. You can hear what he has to say about the show here, at Autfest 2018 hosted by Autism Society of America. In the same breath, we are introduced to an autism group with a range of individuals. These actors are all on the spectrum in real life. Again, they do not represent the entire autism community but they are there, on the screen with their own traits teaching all of us that autism has as many faces as the ‘normal’ cult. We see that they are honest, they have insecurities we can relate to and they care and look out for each other.

2: Doug and Elsa 44333001_353571598538233_179029183383470080_nare encouraged to promote awareness after an incident with Sam. I don’t want to state the obvious but that’s what i’m doing with this blog, that what we are going with the autism support group in Cyprus, that’s what my dad does with hiring people on the spectrum to work with. It’s not me being me when I say that our people are inspiring. As soon as they waltz into our lives they start tearing down walls, they press a reset button and draw a line between who we were and who we are meant to be. They push us out of our box, and pull us into unknown territory. They open our eyes and give us the gift of purpose.

3: Bullying. We experience Sam’s school life without Casey and although it is heartbreaking to see, watch and relate to we are also reminded that people outside our family have our kids back as well. It’s daunting for an autism family to let go and not be in control. It is nearly impossible to trust when it comes to them because of how cruel our society can be to anyone who is not neurotypical. We are reminded that they will have friends and foes wherever they go, and that their friends are capable of loving them and defending them as ferociously as we do. We experience more of the friendship between Zahid and Sam in this season. It is refreshing to see a portrayal of non-family members and how attuned they are to the needs of the person on the spectrum. It demonstrates the impact a neurodiverse person can have on everyone around them. Zahid gives as good as he takes in this friendship and when he feels he’s out of his league he calls in the big guns – Casey.

4: Sam explains that autism is not an accomplishment. It is not something he worked towards or something he has overcome. For neurotypicals it’s easy to think of someone’s progress as ‘overcoming’ their autism but that’s not an accurate observation or conclusion to make. Autism is something he was born with. Autism it’s part of his physical, genetic, cognitive and behavioural development as a person. He can’t overcome it, because he is it. To Sam, autism is like having fingers and toes. Think of it this way: Some people’s toes are long, some toes are longer than others, some are tiny. Some fingers bend to the left or the right, some have big nail  surfaces some barely have any. No two toes or fingers in the world are the same which means that there are 7.6 billion different pairs of toes in the world. Some people can bend make different shapes with their fingers, some can paint with their toes. Some are ambidextrous, some don’t have all ten.  Who’s to say what a persons abilities are based on their fingers and toes?

5: Casey – Which I talk about extensively here.

6: It is painfully obvious how immense and substantial the research was when the concept of Atypical was cooked up.  The crew, the directors, the writers and the actors show us in every single episode that they are trying to understand all the hundreds of layers that exist beneath the surface of an autism family. Every member is their own person. They don’t have the answers, they don’t do everything right because an autism diagnosis doesn’t come with a manual. Their characters are not superficially drawn up scripts that react to autism. Not all their decisions or actions relate to the person with autism. Each member is a complex human being, who struggles with their insecurities, their past, their future, their friendships/relationships, and autism. They are deeply relatable and painfully real.

Bonus tip: It’s so so worth watching.

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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.

40656487_243220489671717_1420749772490276864_n

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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Atypical:

Just binge-watched the much anticipated Netflix Original series ‘Atypical‘. The series follows Sam, who is on the Autism Spectrum, on his journey to finding love.

Even though its sold as a comedy, the show made me ugly-cry a lot more than it made me laugh out loud. The show presented many big and small moments that I have experienced first hand. The autistic lead is sincere and very well portrayed. You can see the extensive research that went into developing the ‘Sam’ character and he delivers quite well, in my opinion. Obviously, not everyone on the spectrum is like Sam, but I think this series is more about the family rather than the lead.

I can’t think of anything I disliked about the show, although you’ll hear a lot of self-proclaimed experts throwing shade at every opportunity. To them I say, appreciate the effort of incorporating an autism story into something as mainstream as Netflix. To you I say, watch it. Remember, not every person on the spectrum is like Sam, but this is a good starting point.

What was the inspiration for the story?
Robia Rashid says: “After working in network TV for a while, I just wanted to do something for myself. I was very aware that more people were being diagnosed with autism, and it was interesting to me that a whole generation of kids were growing up knowing that they were on the spectrum and wanting independence. That point of view seemed so interesting to me — and such a cool way to tell a dating story. You’ve seen the story of somebody looking for independence and looking for love before, but not from that specific point of view. I really was drawn to that. I was a little annoyed because it sounded really hard! I had to do a lot of research. A turning point was when I figured out that I wanted to use Sam’s voice-over. But it was both helpful and harder because it made the project much harder to write.”

Your son has the same desire to be loved that we all do.” This was the sentence in the trailer that made me want to watch Atypical. (I write about love here a lot)

I saw a lot of myself and my family in the Atypical family. The mum’s passion, making her life all about autism for so long that she forgot to live her own. The dad’s sweet disposition, feeling a disconnect to his son but making silent gestures to show his everlasting dedication to his family.

And of course, the sister. Sam’s sister spoke to me more in what she left unsaid. Watching the show as an autism sister I saw in her all the thoughts I have had in the last 19 years. I have so much in common with her and her family life. Not the obvious, as I am anything but a track star. Her triumphs are overlooked, her life is dependant on her brother’s and her future hangs in the balance. Sam says his sister never lets him get beat up as she instinctively steps in front of him when someone asks what’s wrong with him. Yet throughout the series she playfully punches him, hits him, climbs over him and jokes about his quirks. Casey (the sister) is so well written as a character she made me cry every time she was on screen.

Casey’s success is overshadowed because her family is preoccupied with Sam. When she meets up with them, she doesn’t hold a grudge. When her big news is obscured by what will happen to Sam, it’s her boyfriend who makes a scene about it to the parents. Casey knows Sam is paramount, she knows because she wants him to be. She struggles with deciding whether to ‘move on’ and do what’s best for her or to stay and help Sam through the hard times coming in the household. I lived this struggle. She is fearless when its comes to her brother and telling people to back off. She is his.

I can’t wait for season 2 of Atypical and I know it will be just as touching as the first. Well done Netflix. Well done to Robia Rashid for taking this on and doing it so well.

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5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

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Hope in April – Until everyone understands

World Autism Awareness Week: 27 March–2 April 2017

World Autism Awareness Day: 2nd April 2017

USA National Autism Awareness Month: April 2017

As I write this, I am listening to Theresa May trying to answer questions about triggering Article 50 earlier on today. And then I look over at Christos playing on his game boy and I think “What can I do?”. I’m home until Sunday, which incidentally is World Autism Awareness Day. This is the day that Autism Speaks launches Light It Up Blue – where thousands of iconic landmarks and buildings join the hundreds of thousands of homes and communities around the world to “light it up blue” in support of people living with autism. Autism-friendly events and educational activities take place all month to increase understanding and acceptance and further support people with autism. Join this initiative here. You can register your business, you can wear a blue t-shirt, a blue accessory, you can use the official hashtag for the event #LightItUpBlue, you can donate, or you can just read one article about autism. Whatever you do, all that matters is that you do something. Autism Awareness Day/Week/Month is all about knowledge, and it’s all up to you.

Every year I post about what you can do and what is being done around you. So here goes:

  1. Display the puzzle: The Autism Awareness Puzzle Ribbon is the most recognized symbol of the autism community in the world. Wear the Autism Awareness Puzzle Ribbon – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture. The puzzle pattern reflects the complexity of the autism spectrum. The different colours and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on the own terms.
  2. Find out what’s happening near you: Connect with your neighborhood. Many Autism Society local affiliates hold special events in their communities throughout the month of April.
  3. Watch a movie or documentary about autism. Louis Theroux’s documentary “Extreme Love Autism”, Oscar nominated “Life, Animated”, “Autism in Love” on Netflix, “Girls with Autism” on ITV are just a handful of recent depictions of autism.  You can also read about Autism, and it doesn’t have to be a journal, or research. It can be fiction, like “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, “House Rules” by Jodi Picoult or “Memoirs of an Imaginary Friend” by Matthew Dicks.

IMG_73964. Wear blue.

5.  Watch the National Autistic Society’s video about how you can get involved.

6. Fundraise. In your community, your school, your work or within your group of friends. NAS has released free teacher resource pack too. Each pack is level-specific, and contains teacher guidance, lesson and assembly plans, presentations and activities to help you improve understanding of autism at school. For fundraising ideas see what Connor is doing this year. A fundraising pack is also available for you to get for free or get ideas. Join a bucket collection or create your own. From 27 March–2 April, collections will be taking place across the UK at different train/tube stations! Participating stations include: King’s Cross, Waterloo, Euston, Paddington, Victoria, Baker Street, Charing Cross, Liverpool Street, Oxford Circus, Leicester Square, Cardiff Central, Bristol Temple Meads and Nottingham station. Each day will be split into 3 hour shifts and if you’d like to get involved please email Caroline who will tell you which places are still available. If you are not in the UK or there isn’t a bucket collection near you, you can try collecting at your local supermarket, local train or bus station, workplace, local community centre. Top tips and important information for bucket collections can be found here as well as information on sending money. If you are in Cyprus and you want to hold an event like this you can contact our Autism Support Group Famagusta, or me to pay into a local organisation.

7. Join a Night Walk for Autism in London, Manchester or Bristol if you are in the UK or create your own! Watch the 2016 Night Walk video and be inspired!

8. Talk to someone on the spectrum, or their family. Or me.

9. Autism-Europe will be focusing on the theme “Break barriers together for autism – Let’s build an accessible society”. The aim of this campaign is to understand the barriers to inclusion autistic people are up against and how our society can work together to overcome and remove them. The campaign toolkit explains the idea behind the theme and outlines in detail how and when you can support the campaign in whichever way you prefer. The toolkit bring together recommendations on how you too can be part of our mission to make people more aware of these barriers, and to build momentum in pushing for their removal.

10. Tell someone April is Autism Awareness Month.

It really is that simple. Awareness does not need a voice, it needs understanding. Awareness is achieved within oneself before it can be transmitted to others.