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The A word – Acting

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Episode 1 of Season 2 introduced us to Mark. He is cast as the son of one of the mums in the autism support group that Joe’s parents attend. He holds his plate and tea and stands in the background while mum has a conversation. You can’t miss him, even in the background, his TV mum jokingly mentions that he’s 6ft3. He doesn’t sit until his mum asks him to sit down and tells him exactly what they will do; he will sit and have his tea while mum has a conversation and then they will get on the bus and go home. He repeats this back to her.

For a lot of people this interaction will mean nothing. For me, this interaction is why I will be watching The A word again tonight. That moment is our entire life with Christos. Telling him what the plan is, every hour is accounted for. It started with pictures (Picture Exchange Communication System) on a board, then printed out schedules on the fridge, and finally it became a conversation. I remember my mum putting together this schedule for him every night; at 6.30am we wake up, at 6.40 you brush your teeth, at 6.45 we get dressed, at 7.00 we drink tea and at 7.15 we get in the car to go to school.

image (17)We used to have the whole week planned out and changing the plan was a nightmare. As his speech therapy progressed we put pictures and words together and formed sentences which he had to say before he got what he wanted. I found some examples which you can see in this picture. Once he familiarised himself with all the pictures and the sounds, he didn’t need them anymore. He could form sentences all by himself and name anything in the house. Now he has a weekly plan. He knows months off by heart and has a sense of how far away or close they are. So, for example, when I will visit again, or when he’s going to start going to the beach, which days he stays with my mum or dad and which days he goes to my grandparents etc.
Travis Smith, who portrays Mark, is an actor with autism and this episode was his acting debut. Travis is working at ABLE Radio through an initiative which aims to boost the employment prospects of 1000 young people with a learning disability and/or autism. Engage to Change. He secured the ABLE Radio placement which has been helping him develop his skills, and is working towards realising his dream of acting and singing for a living. “There is nothing else that matters when I am acting,” Travis says. “Just before I do it, I am petrified but, once I am singing or acting, I lose myself.”
Joe is not the kind of autism I grew up with, but Mark is. A gentle giant that is shy and loves a plan. I feel that we will be seeing more of Mark as the show goes on, and I hope that we will see many more representations of autism. When you watch tonight’s episode of The A Word (BBC One at 9pm GMT) look at the details, don’t just listen to the words. Notice the hidden looks, the things parents do that look like routine to them but aren’t routine for you. Look out for Mark and you might see a bit of Christos in him too. It is breathtaking to get to witness a young adult with autism do what he loves. It is inspiring to watch Travis break free from the stereotypes of what people on the spectrum can and cannot do.

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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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Shopping with Autism

The thought of writing this post makes me smile. It’s that smile you have when you have overcome something and then you look back on it years later and think “How was that my life?”.

In 2015 I spoke to you about Christos’ traits in “Why fit in? a) Gestures“: [He] likes to shake his arms in the air a lot, quite forcibly and he makes this laughing but not laughing sort of sound. When we are in big open spaces he’ll run like the wind. When we were in supermarkets, when we were in Disneyland, generally in places where he feels comfortable. 

Looking back on that now, it’s quite funny to think that I used supermarkets as an example of a place where he feels comfortable.

Up until the age of 8 (?Mum correct me) going shopping with Chris was a nightmare. I’m not exaggerating. It was like walking into a living breathing nightmare. Most of the time mum and dad wouldn’t take him. But when you’re on your own and you have a 10 year old and a 2 year old, and they need milk, or nappies, or food, you gotta pack up and go to the supermarket. It wasn’t something we could avoid.

Just thinking of driving up to the supermarket makes my palms sweat. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised.

A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying. He would organise the shelves. If something in Isle 4 was supposed to be in Isle 12, he knew and he would fix it.

Now? Now it’s one of his favourite places. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. No crying or screaming involved. This is a testament to my parents. Not the strangers around us who, instead of helping, stared in disbelief, not being able or willing to understand that my brother was not naughty he was just in incomprehensible pain. My parents made this progress possible. Milestones are different to all of us, and this is a millionstone (trademarked).

When I left home in 2008 he was 10 and in the organising phase. My dad worked nights so in the afternoons it was just Chris and mum running errands, going shopping. I remember her calling to tell me they had been ‘banned’ from a supermarket. Chris was sorting out the chocolate shelf (without pay) like he always did, while mum was picking some other stuff up from a bit further down. Chris found an open chocolate bar and he kicked it under the shelf. [LOLLING] I mean, why was there an open chocolate bar there in the first place?? Who’s fault was that?

Anyway, one of the staff found my mum, told her he was disturbing or stealing or that he was part of the chocolate mafia; I don’t know what. So, they asked them to leave. Now, those of you who know my mum can imagine. Those of you who don’t, let me just tell you that she’s not like me. She’s shy, polite, kind and was shocked. In her state, she was unable to express herself and instead just stopped going to that supermarket.

My rationale was to call the supermarket, from the UK. I was quickly convinced not to. Instead, I told everyone who would listen that this had happened in that one supermarket in my home town. My sister (who broke the World Guinness record for the 4th time, as mentioned in previous post #justsaying) was outraged. I remember us driving past the supermarket and always remembering, bringing it up.

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I was so resentful of that brand, that when I moved to Brussels and it was the neighbourhood supermarket, I hated myself for sometimes forgetting to make a list and going somewhere else and instead having to buy milk from there. That’s right, I can hold a grudge. The original supermarket recently closed down, and I would be lying if I didn’t feel a tinge of happiness that that place, where my mum was made to feel inadequate and my brother was singled out for being himself, was no longer there.

In recent years, many big supermarket brands have introduced measures to help their autistic buyers. For example, The Asda “Quiet Hour”, earlier this year Tesco trialled a ‘quiet hour, Marks & Spencer has launched a uniform range to help children with Autism etc. This year the National Autistic Society (NAS) has launched the “Autism Hour” to help draw attention to the difficulties that people with autism can face in noisy environments.  If you want a glimpse into what its like, watch this video.

In the first week of October, businesses will turn down music, reduce announcements and dim lights to help create a calming and less daunting environment. A number of major retailers have already signed up to the initiative, including Clarks and Toys R Us and we hope to see many, many more name brands on the list.

I hope this is a success. I can’t help the voice in my head screaming that this is making autism the exception instead of teaching acceptance. However, the other voice in my head (i know how this sounds) is reminding me that all the people involved in this initiative will go home and talk about it with their family, their kids, their friends. I am reminded that this is awareness at it’s best because it helps you understand and take away only the best. I hope that this paves the road to us shopping together, with more understanding than judgement, more humanity than dread and with more knowledge than ignorance.

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Friendship

Friends are a funny concept aren’t they? You meet this stranger and you’re like “You. I want to do random things with you forever. I want to share my life with you. I wanna tell you all the stupid things I think of.”

I have three friends that I have known most of my life, and whom I adore beyond measure. These girls are the girls that cry with me when I talk to them about Christo, they get mad with me when I tell them a member of my family was mistreated, they laugh when I tell them I fell over, and check on me and my family when one of us is unwell.  These are the girls I don’t talk to every day but I would run to if they needed me. I love them with the kind of love you love your own. I love them because they love my family with a love you haven’t experienced before, and vice versa. One of them helped with #Project324 last year (you know its you papaokori). One of them makes me laugh like there’s no tomorrow and is my soulmate.

My point is that these people are embedded into my soul and they love my brother as much as i do. I want to tell you about something extraordinary one of them is accomplishing today. She currently holds 3 Guinness Records:

  1. The Longest time in an abdominal plank position (female) is 3 hours, 31 minutes and 0 seconds
  2. The Longest time in an abdominal plank position (female) with 60pounds on her back is 23 minutes and 20 seconds
  3. Most handstand pushups in 1 minute is 35 pushups in 31 seconds

These 3 records she broke to prove to the world that you can do anything you set your mind to, despite all odds.

Today, 21st July 2017, she is attempting to break another World Guinness Record. This time she’s doing it for a little girl called Stavriana. She will be attempting to break the record of 1206 knuckle push ups to 1300 knuckle push ups in 1 hour.  Stavriana suffers from Cornelia de Lange syndrome and Crohn’s desease. She is only 7 years old. She is the youngest of 5 siblings, all under 18, and is being raised by a single mother. She is in pain every day and the money is being raised to enable her to travel to Israel for an operation that will make life a bit easier for her and her family. The aim is 50,000 euros. You can donate through paypal at https://www.paypal.me/helpstavri

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I could write pages about how inspiring this woman is. But I will never be able to  tell you how she makes me feel. This girl is magic. People around her love her because of how unapologetically she loves people.

She has overcome medical predictions and countless hardships in life. Yet, she is always the one giving. She is always the wise one, the funny one, the one you go to. The brave one.

I know that our town, our island will embrace you and Stavriana today. I know that they will give, and make you proud. I know you won’t expect the love you will be suffocated with today. I also know that no one deserves this more than you.

No good luck needed. I’m with you,  my sister.

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The Biology of Autism

  1. The gut.

You may recall me talking about a ground-breaking new study in January (Hope in Poo) where alterations in the gut ecosystem were linked to autism traits. These scientists used 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) which was tested and proven to improve gastrointestinal and autism symptoms.

The gut has always been under observation in autism study. That’s why a gluten-free and casein-free diet is an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“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.”

2. Stem cells

In “Dog Treats, Ice Cube and Rutgers University for Autism” I mentioned stem cells research, a first-of-its-kind study at Duke University in Durham, North Carolina. The study assessed whether a transfusion of the children’s own umbilical cord blood containing rare stem cells could help treat their autism.
Dr. Joanne Kurtzberg, who heads the Robertson Clinical and Translational Cell Therapy Program, teamed up with Dr. Geraldine Dawson, director of the Duke Center for Autism and Brain Development began a trial over two years ago. During this time 70% of the 25 children, age 2 to 6, were found to have behavioral improvements by their parents and tracked by the Duke researchers. The children traveled to Duke three times over the course of a year. They underwent a series of evaluations such as autism assessments, MRIs and EEGs to track their brain activity. On the first trip, the children received the cord blood infusion along with the intense evaluations. Each child received 1 billion to 2 billion cells, given through an IV in their arms or legs. At six months and then a year later, the children returned for more tests and observations.

Both Dr Kurtzberg and Dr Dawson have personal experiences with autism which shaped them and what they wanted to do in life. They are now in the midst of the definitive trial on whether cord blood can treat autism — a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

At present they are overseeing the definitive trial on whether cord blood can treat autism. This is tested by using a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

The hypothesis of the study is that certain immune cells within the cord blood are crossing the blood-brain barrier and altering brain connectivity while also suppressing inflammation, which may exist with autism.

3. Genes

 Autism Speaks‘ MSSNG Project, has 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. Furthermore, the report talks about ‘copy number variations’ and abnormalities, which are  essentially copy variations found in areas of the genome once considered to be ‘junk DNA’. These areas, full of the copy variations, help to control when and where our genes switch on and off and appear to be crucial to brain development and function.

Genetic sequencing for autism is paramount if we are ever to understand what autism is and  how we can prevent or treat it. Understanding the biological factors that contribute to the condition can lead to better treatments for each individual case, as no two people on the spectrum present the same traits.

4. Mutations

Ten years ago, Michael Wigler and his colleague, Jonathan Sebat, reported that ‘de novo’ mutations (mutations occurring spontaneously) occur more often in people with autism. The mutations they noted were in the form of ‘copy number variants’ (CNVs), deletions or duplications of long stretches of DNA. Data from more than 600 families, they identified CHD8DYRK1ASCN2A as some of the leading ‘autism’ genes.

Right now, 10 years later, researchers pinpointed 65 genes and six CNVs as being key to autism.  “More and more, we are erasing this idea of autism being a stigmatizing psychiatric disorder, and I think this is true for the whole of psychiatry. These are genetic disorders; this is a consequence of biology, which can be understood, and where traction can be made.” says Stephan Sanders, assistant professor of psychiatry at the University of California, San Francisco, who co-led the study.

Conclusions:

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The stigma attached to autism comes from the early link between autism and

schizophrenia. Swiss psychiatrist Paul Eugen Bleuler coined the term ‘autism’ to describe a key feature of schizophrenia. Specifically, Bleuler used ‘autism’ to describe how people with schizophrenia tend to disengage from the outside world. It was not until 1943 that an American child psychologist, Leo Kanner, reclaimed the word for the range of traits we know today as autism. Psychologists Noah Sasson and Amy Pinkham hope to build up a new vocabulary to help disentangle the two conditions in “The social ties between autism and schizophrenia“.

Autism is also commonly misinterpreted as a learning disability. Despite the fact that a good percentage of people on the spectrum may face learning difficulties in addition to an autism diagnosis, or may present the familiar autism symptoms, the two are separate. Intellectual disability, also known as learning disability, is currently defined as a significantly reduced ability to understand new or complex information, to learn new skills and a reduced ability to cope independently. Typically, this is measured by intellectual functioning (commonly referred to as IQ) and adaptive functioning  (day-to-day independent skills), both of which are significantly below that which would be typically expected with difficulties in most, if not all, areas of intellectual functioning and daily living skills.

This is why we need to learn, read and understand autism. Appropriate assessment and formulation can facilitate early intervention and help people on the spectrum get the help they require early on.

Our generation is lucky enough to be living in a time where autism is at the forefront, our stories are being heard and the research is ground-breaking. Stop wasting your time reading about Blac Chyna and the Kardashians and read these reports. Maybe next time you use the word ‘autistic’ you’ll know a more about what it means. Maybe if you learn about autism and teach your children about it, they will be inspired enough to become the ones that solve the puzzle. It may be that you are the one.

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Our Golden Hat will go on – #APD2017

It’s Autistic Pride this Sunday – 18th June 2017. In honour of the day I will be writing about different foundations from all over the world and how you can help.

“After watching A Mother’s Courage: Talking Back to Autism with my daughter, she turned to me and asked, “What if I wasn’t able to tell you I love you, mummy?”” – Kate Winslet (aka Titanic aka A-list Hollywood actress aka autism advocate).

Co-Founders Kate Winslet and Margret D. Ericsdottir met when Kate recorded the English narration for Margret’s documentary, A Mother’s Courage: Talking Back to Autism, which captured her journey to find a way for her nonverbal autistic son, Keli, to communicate. Throughout her journey she visits scientists and families all seeking  a way to get to know the person behind autism better. To get to know her son.

The Golden Hat Foundation is a non-profit organization dedicated to changing the way people on the autism spectrum are viewed by society. They focus on abilities and potential, education and career training. Long-term goals include the establishment of innovative post-high school campuses designed for people on the spectrum.

This is a great organisation to support and follow. Here is what you can do:

  • Learn more about the organisation
  • Subscribe to the monthly newsletter
  • If you are in Texas, attend one of the Meetup Groups and share your experience
  • Volunteer
  • Donate
  • Visit their blog

In July 2015 I wrote an article for Autism Daily Newscast: 5 things my brother’s Autism stole from me and the Golden Hat Foundation shared and retweeted Christos’ story.

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This boy had a golden hat.

The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.

I think the great thing about The Golden Hat Foundation is that it is a partnership between two mothers, whose experiences with motherhood are exceptionally different. Yet, they come together because they are both mothers. Just like we need to come together, despite our lifestyle differences, because we are human.

Happy Autistic Pride Week!