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21 and Atypical: More than meets the eye

Autism traits are not immediately visible all the time. It may take a while to notice the stimming, the echolalia or the sensory deprivation. For decades we have been trying to be as mainstream as possible, but the tables are turning now and our uniqueness is being celebrated. People are telling their stories and we are telling Christos and Stephanos’ stories with the hope being that you look a bit closer, stare a bit less and learn a bit more next time you meet a family on the spectrum. 

Christos and Stephanos are just 2 neurodiverse adults. They communicate through PECS or simple sentences, they reach milestones at their own pace, they love, laugh and feel the same as you. They are a bit more sensitive to light or noise and may come to a conclusion a different way but they are an equal part of ‘your’ world. This society we have conjured up, with its timeframes, standards and expectations is in constant motion and it is up to us to make sure no one gets left behind just because they don’t fit into a make-believe box. The perpetual need to fit in is what makes up most of the worries autism families have. Will he fit in? Will she support herself? What if they get lost? Will they find their way? Who will be there when we’re gone? The therapies they undergo are for their own quality of life, but the social conditioning they go through – no flapping, no screaming, no stimming etc – comes from fear of being different. It stems from the desperation of wondering what society will do to them if we aren’t there.

Then, they do something amazing and we forget all about society’s fictional rules and its illusions of greatness. Because we witness greatness every day. Our kids are living proof that just because someone said it was impossible doesn’t mean it is. That just because they didn’t speak until they were 8 doesn’t mean they don’t understand what we say. They stomp all over misconceptions and create worlds that work on inspiration, love and growth. We see this every day with our kids but we spend so long worrying and sheltering them that we forget how intelligent they are and that they have been watching us and learning for years while we were too busy talking. 

thumbnail_8C5CE67D-701A-4313-916B-8E79ACC208CDStephanos’ mum remembers a cruise trip to the Greek Islands with all 6 kids. “On the second day we were all upstairs playing cards and Steph was stimming around us, in our line of vision. There were 6 pair of eyes focused on playing cards but also watching Steph. At some point, in a split second, he was gone. We lost him. Steph’s verbal abilities at that age were limited but he could say “toilet” and “help”. Immediately, the 6 of us had spread out on both sides of the ship, on all the floors, in the lifts and asking people if they had seen him. Finally, some restaurant guests who knew us from Ayia Napa said they had seen him in the lift going down. We went to our floor immediately and found him in the loo. He used the lift, went to the correct floor and corridor and knocked on his brother’s room door which was different to our own! What is amazing to me is that he knew our room was empty and so knocked on his brother’s door instead.” It may seem menial to you, going to the loo when you need to, but it was a milestone for Stephanos. It was an eye-opener for the family, and a reminder that just because they are overprotective and Stephanos doesn’t speak  it doesn’t mean that he is not fully aware of his surroundings or capable to make rational decisions to fit his needs.

Last year, when Christos and I were travelling back from Sri Lanka we were sat on 29746571_10156190751480030_515778963_othe plane repeating his schedule and what times he would eat what. So we’re cuddling under the blankets talking about pasta when I realised I had to explain time zones to my brother who is obsessed with time. IMAGINE, trying to explain time zones to someone with only numbers and the words – dad, mum, Christos, Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo and said this is dad, the time in Doha which is where Christos and Theodora are going, and the time in Cyprus where mum is. Then explained that the airplane would take off and land in between Colombo and Cyprus at Doha. He was staring at the phone and me while I’m making grand gestures and airplane noises and showing him numbers. I wasn’t sure he got it, I underestimated him. Then we got to Doha and he asked me to change the time on my phone to the local time, for which he had done the math in his head, and did the same when we landed in Cyprus. Now, he has a globe in his room and can point to where we all are and where we’re going next. 

We’ve seen these boys grow, learn and make progress in front of our eyes. Yet, somehow these false thresholds set by our communities seep into our subconscious and make us forget how extraordinarily ordinary they can be. They quickly catch us by surprise, always a step ahead, whether it’s giving us directions or using words we didn’t even know they knew and remind us to not stereotype but to learn about the talents our kids have and to stop thinking there’s a limit to their potential.

Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs” – Neurotribes Read more about Autism Advantages.

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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 Sri Lanka Diaries: Proud Pereras

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Being back to life without Christos is harder than I thought.  The first couple of nights I kept waking up at 4.30 looking for him. This holiday was different because we depended on each other. Whatever he needed, I was the one he would come to. No back ups, no saying ‘yeah later’ and then never getting round to it. It was a surreal glimpse into our future.

I’ve written about the challenging parts of the holiday, now it’s time to go back to gushing over how great he is.

1. His routine: Christos works out his day in hours. So in the evenings, we would set out a plan for the next day hour by hour. For example:

  • 7.30 tea
  • 8am walk
  • 9am toast with jam and cheese (maybe chicken sausages)
  • 10am tennis/badminton
  • 11am go to the pool
  • 12.30pm shower
  • 1pm lunch (pasta with chicken or rice and curry)
  • 2pm game boy/or laptop (Shrek or The Road to El Dorado)
  • 3pm pool
  • 4.30pm shower
  • 5.20pm listen to music
  • 6pm tea/chocolate/fruit
  • 7pm listen to music
  • 8pm dinner (pasta with chicken or rice and curry)
  • 9pm bedtime

This wasn’t as rigid as it looks. For example, I could negotiate an extra half hour at the pool if he was in a good mood. Or we would skip the walk or the pool if it was raining. The night of the christmas gala dinner we stayed at the restaurant until 10.30pm! Also, if we were travelling the schedule looked different. He even let me explain to him how there are different times in different countries.

IMAGINE, trying to explain time zones to someone with onlyimg_8364 numbers and the words – dad, mum, Christos + Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo (dad), Doha (Christos + Theodora), Cyprus (mum) and explained that the airplane would take off and land in between. I wasn’t sure he got it, until we got to Doha and he asked me to change the time on my phone to the local time and did the same in Cyprus. I CAN’T EVEN.

 

2. His food: I’ve talked extensively about his eating habits on the blog and how far he has come from the days when mum had to pack a bunsen burner to take to the Maldives. He ate all sorts of chicken, and all sorts of rice and all sorts of pasta and sauces. He had a variety of options and made his mind up quite quickly. It didn’t bother him that it wasn’t always the same rice, and he never went for white. It didn’t bother him that the chicken was curry, or jamaican, or spicy, or salty, or lemony. He ate what was there, what caught his eye and was willing to switch in between. The chefs were on standby to make him something special, but we never needed to. In fact, all the staff were at his beck and call. I am so grateful to all the great people at Amaya Lake for their kindness; I wrote a review for them here.

3. Packing: He is the best at packing. I’m okay at packing – dad is not great (sorry daddy). Every time I lost something, Christos knew where it was. Every time I was packing he would bring me things I would have DEFINITELY forgotten. He is in his element – bossing us around and organising. Thanks to him, we went back home with all the things we had taken with us.

4. Compassion: While in Sri Lanka my aunty had a bad fall and had to be operated on. When we got to the house it was 5-6pm and Christos had warned me that he wanted chicken nuggets that night for dinner at 8pm. But: Which ones? Breadcrumbs or batter? Smooth or bitty? SPICY OR REGULAR? Or maybe a little img_8415bit spicy? Point is, it wouldn’t be the chicken nuggets he’s thinking of. I obviously always say okay and figure out the rest later. When we got there, it was obvious that we needed to make sure our aunty was okay first. Dad was mega stressed and there were millions of things he had to sort out and think about. Nuggets were not a priority. Christos played with his game boy from 5pm to 8pm that day. Why? Because he knew something was off. He knew the schedule was off. He didn’t ask to listen to music, or anything. He just played his game boy and stayed out of our way. We had pasta that night for dinner and it was okay. That was our proudest moment of the whole trip.

5: Affection: He was constantly holding my hand, giving me kisses, looking out for me. When I had a tummy ache, when I had a headache, when I was stressed – he was there for me. It was hard going back to Cyprus because his priorities changed. He was home. That meant he had our mum and nan who take care of him every day, all day. He didn’t need me anymore. Kisses were rushed, and cuddles were cut back to only when necessary. It really, really hurt. But! Let’s be real, he sees me 10 days a year. At the end of the day, I was only there for him for 13 days so obviously I’m not number one. I’m probably top 5. I hope I’m top 5.

This holiday meant so much to the three of us. There’s so much I’d like to tell you, but I can’t express it in words. This holiday was a feeling. When I think back to those 13 days, I feel a weight on my chest, it makes me cry, it makes me grin ear to ear and it makes me proud.

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The Sri Lanka Diaries: 13 years later

13 years ago on 26th December 2004 we were just two kids holidaying with our parents in Sri Lanka.

13 years ago, while I was clutching onto Christos and waiting for the second tsunami wave to hit, I thought of all the things I might not be able to do. I wondered if my family knew I loved them. If we would be found. I thought of what I wanted to do, and how I would do it.

13 years later, unavoidable circumstances have led to Christos and I being on holiday in Sri Lanka alone for three days. We aren’t slumming it in the slightest. We are still staying in Amaya Lake, got a suite and all the staff doing their best to provide us will all the support we need.

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It’s not the first time we’ve been alone together. I used to be in charge when our parents were at work for 3-4 hours. But we were at home. I knew who to call; I knew what needed to be done in case of an emergency; our parents worked 15 minutes away and our grandparents lived 30 minutes away. For the last three days we have been a 3 hour drive away from dad and 5,644km away from any kind of family. No back up. And when I say no back up, I mean no back up that can take over from me with Christos. I’m the only one who knows how to make his food, what he says, what he drinks, his schedule, his expressions, his mood, how he likes his clothes, socks, showers. I’m the only one he can depend on for 3 days. I haven’t found a word that describes what it feels like yet.

In 2004 Christos was 6. He had not started speaking yet and we communicated with PECS. We had a bag packed with only his food. There was his gluten free pasta, halloumi, lemons, rice, a burner and his salt and vinegar Lays crisps. Remember, this was 2004, in a village in a third world country in the midst of a civil war. No smartphones, no internet, no roaming, no YouTube, no Lays.

Despite my stomach ache, insomnia and the permanent look of panic on my face, the three days have been a breeze. It may not sound like a long time and you might be thinking that I’m being a martyr. I assure you, I tell myself to (wo)man up constantly. We have been following a schedule for the last 11 days, and we have not deviated from it much, unless necessary. My only job is to make sure we stay on schedule.

And that nothing happens to me.

Or him. But mostly to make sure we are on schedule.

The boy who couldn’t speak or understand why we were rushing him out of the house and disrupting his schedule has been replaced by a giant who follows instructions, communicates clearly with me about what he wants and understands that he needs to behave for me. We even went to a gala dinner together! He has enchanted the staff and the other guests. He is aware that I am alone and that I need to be taken care of as well. I know he knows because I occasionally get a kiss I don’t ask for or he looks back and holds my hand. My baby brother has grown into a beautiful human and that is all I want for Christmas for the rest of my life.

Some of the difficulties we have faced these last three days include:

– Having to check the time constantly to make sure we are on time. He does this on my phone approximately every 5/7 minutes.

– Always taking the same route to the same places. I tried to vary our walks slightly and had to deal with a tantrum because of it. He adapted quickly after a stern talking to and threats to call mum.

– Constant reassurance that we are keeping to schedule. He repeats the schedule to me constantly and I have to confirm it every time, with a smile and a kiss. Even as i write this he is telling me that he will be listening to music at 17.20 at volume 50.

– Brushing teeth. I have to count to 60 so that he brushes his teeth properly.

– Exercise. I’ve only been able to convince him to take a walk with me once in the 3 days we have been here. But at least we did it!

– Stimming and echolalia in a crowded restaurant. His arm flapping and laughter or repetition turns heads but everyone has been very helpful and understanding so far.

– The volume. Of the TV, the laptop, the game boy, his voice. It’s a constant negotiation of numbers and compromise. I am amazed at how willing he is to cooperate.

On this day, 13 years later, I am content that my family knows I adore them. I am assured

img_8423-2 that whatever happens I have people in my life that will always find me. I set goals and I have accomplished most. I’ve done most of what I wanted to do and I have plans for the things I haven’t been able to do yet.

Yesterday was all about self-indulgence, presents and personal happiness. Today is about remembering and honouring the 220,000 who didn’t get the chance to do what they wanted by living out our own lives to the fullest.

No doubt our visit to Sri Lanka has been impactful. Everyone in our vicinity has been touched by autism. Everyone has learned something new. I hope this means that the next autism family to visit Amaya Lake will be in for a treat!

Be kind. Share the love.

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The Sri Lanka Diaries

Christos, Dad and I are in Sri Lanka for 13 days. Note that this is the first time Christos has travelled without my mum. The prospect of travelling with an autistic adult who towers over both his father and sister was daunting. However, the only restless Pereras were the neurotypical ones. Christos cruised through the airport security, the airplane, the food, the transit and the overnight flight.

He adjusted to life in Sri Lanka just like a true traveller. All he asks is what the schedule is for the day. At our number one hotel we had a suite, a pool and 3 buffets. The staff were curious about Christos and keen to help in any way possible. By day two, everyone knew who he was. They knew what breakfast he liked and what ice cream he preferred. They even learned that ‘Efharisto’ means ‘thank you’ in Greek. Christos has no reservations when it comes to being in Amaya Lake. Even though it’s been 7 years since he last visited, he remembers it as if he has been there this whole time. His memory is impeccable.

The way of life, the culture is the first thing you notice when you get off the plane. Everyone is smiling, everyone wants to talk, help, and everyone stares. I can speak for Cypriots and Brits when I say that staring is not ‘polite’ and not encouraged. However, here it’s unavoidable. Staring here is not malicious because if you have an issue with someone you will sort it out immediately. Staring is education. It’s a revelation how little it bothers us here in comparison to Europe. The chasm between these two continents is evident in its people.

We talk about how lucky we are with Christo every day. There are families that can’t even dream about a vacation with autism. Yet, here we are. Talking to people who don’t know the word and explaining to them what this spectrum is all about. We are literally walking, talking, breathing awareness. Just by walking in a room Christos captures their attention, he evokes questions and he bestows new knowledge. This information will be talked about with friends, with family, and it will change someone’s life; maybe not here, maybe not now but one day.

I’ll go into the details of this adventure in later posts. For now, let me just remind you to respect and understand each other. We are only here for a limited time, and in that time we can make wonders happen. Remember that you may be the missing piece to a puzzle we all want solved.

Happy Holidays from the Pereras.

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#Project324 – Exception or Exceptional?

I find it really difficult to explain if awareness means making Autism the exception – which would include special learning methods, special units, training, etc; or if it means accepting that Autism is exceptional – and whether exceptional means rare/uncommon, or inspirational/remarkable.

Exception:

Making Autism the exception would include all the initiatives I have seen come into place these last few years. For example, Microsoft, Apple, BBC, Light it Up Blue, #EmployAutism, First Repondent training, police training, teacher training and the Israeli army which uses autistic volunteers to interpret complex satellite images. These organisations have put in place procedures, other than their usual, to accommodate individuals on the spectrum. Their training is tweaked to provide for sensory overload/deprivation, social abilities and employability. Is this the answer? Will awareness make Autism the exception? And if it does, will that force our global community to become more inclusive?

Will being the exception finally give Autism it’s place in our society?

It feels like a really roundabout and oxymoron-ish (yes, i made that up) way to make equality and inclusivity a reality.

So, a couple of new initiatives that have taken place this week – which make Autism the exception are:

  1. The Asda “Quiet Hour”: The Manchester branch is pioneering a ‘quiet hour’ in aid of autistic shoppers.The Asda Living store in Cheetham Hill is aiming at the people on the spectrum who have sensory sensitivity and will experience a sensory overload when in big crowds, noise, lighting etc. This is what Chris use to go through when he was little, and still does sometimes. The plan is for the store to open one hour earlier in the mornings to allow people who suffer from sensory overload to come in. This hour will lack electronic distractions, such as escalators, music and display TVs, and the public address system will not be used for announcements. Simon Lea, the manager, started thinking and brainstorming with colleagues and customers after he saw one of his customers, a boy with Autism, struggling to cope in the store.“If we can make a few small changes to give these customers a better shopping experience and make them comfortable then I know the store will be a better place to shop for everyone.”The store will open its doors to ‘quiet time’ on Saturday 7 May at 8am, the day after Chris’ birthday. And I KNOW that they aren’t doing this for Chris – but it kind of feels like they are. It kind of feels like we have had an impact, we have been a part of the wave of change which brought on this beautiful idea. That small boy in Asda has inspired an exception which will make a massive difference for the autistic community of Cheetham Hill, Manchester, and hopefully all the UK Asda branches.  Because of that little boy, the store manager asked, learned more about Autism and put together a plan to include people on the spectrum. That’s how awareness works, like an infection, like the plague. The Autism Awareness plague.
  2. Autism Puzzles, a Cardiff-based charity, trained a group of Cardiff Airport staff on how to better respond to the additional challenges faced by those living with autism, related conditions and their families. I mean, if you think bed time is difficult, travelling with Chris was torture when he was younger. Cardiff Airport is now equipped to offer support to the people that fall under the Autism exception. Kind of like wheelchair access, but for Autism; and what a wonderful thing wheelchair access is! I get furious when a building is not wheelchair accessible, now we can start getting mad at buildings that aren’t Autism accessible.

    The airport staff even hosted an open day on the first floor of the main airport terminal to promote Autism Awareness Month and to offer advice to staff and passengers regarding the condition.

    We appreciate that some aspects of the airport experience can be daunting for those living with autism and related conditions, so we are dedicated to continuing our partnership with Autism Puzzles and delivering the highest levels of customer service” Debra Barber, managing director and chief operating officer.

  3. On Thursday 28th April (this Thursday) the House Of Commons will host a three-hour debate about Autism. The debate is a motion on World Autism Week (which ended on 8 April). It cites “a lack of understanding of the needs of autistic people and their families”, and calls on the government to “improve diagnosis waiting time”. You can watch it or read the transcript here – no excuse for not knowing where to look! The debate will call for “a public awareness campaign so that people can make the changes that will help the UK become autism-friendly”.

Exceptional:

Accepting that Autism is exceptional needs further definition. If we view exceptional as meaning uncommon, rare, weird then we fall under the exception bracket of awareness. Accepting Autism as being remarkable/inspiring is the meaning I am going for here.

This sort of awareness requires a very broad kind of thinking, it needs you to bulldoze all your established conceptions of Autism. This kind of awareness comes from inspirational people committing inspirational acts in the name of Autism. The kind of acts that touch your heart instead of your brain. The ones that speak to your soul, your humanity, and draw your body to get out there and help, not the ones that make you brainstorm in order to develop plans and initiatives. The irrational rather than the rational, if you like.

Making Autism exceptional is only achievable through the telling of personal experiences. Only through the eyes and words of people who have been inspired by Autism can inspiration be spread.

  1. Castle Newnham pupils have made 1,000 paper cranes to raise money for a sensory room at their primary school, as part of Autism Awareness Week.Ancient Japanese legend tells of Gods granting a wish to anyone who folds a thousand origami cranes. Does it make sense? No. Does it touch your soul? Yes. Does it make you want to take up origami? Uh maybe. Does it make Autism exceptional? YES.
  2. On Sunday, the BBC ran a story about a father running the marathon for his son, Dylan, and in support of the National Autism Society. Jon Barbuti’s words are very similar to my own and he did this so that “Next time you see a kid have a meltdown you might see it differently, when a random kid grabs your arm to ask you if you know what Minecraft is you might see it just as their way of trying to engage in conversation.” Jon made Autism inspirational.
  3. You may have seen the, now gone viral, video of a boy with autism crying at a Coldplay concert because they are his favourite band. If you haven’t – you have to. Autism can feel, it can love, it can cry and it can laugh – and this video will make you feel all the things.

There are so many inspirational stories I could share with you that make Autism exceptional. The point of this week though is that we can make Autism a topic by making it an exception and by making it exceptional, it’s not a question of either/or – because Autism is both an exception and exceptional. I think the worst outcome would be if we made it either/or. Autism doesn’t need your pity or fear; it needs you to learn and adapt. It wants you to be inspired.

Autism doesn’t need an attitude of exceptions – it needs acceptance of the exceptional.

The struggle for awareness has reached a critical point. The point where we now know we can make a difference and have come a long way but, still have light years to get to where we want to be.

Happy Week 10! Here are some pics 🙂

England:

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Paris:

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Wales:

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#Project324 Week 9

Week 9 begun with France and Switzerland receiving their cards and starting to distribute this week. Christos’ 18th birthday is ONLY 2 weeks away today.

List of Fab Things in Week 8 & 9:

FAB 1: After my fab auntie Eleni gave me the idea, I have spent most of my wage on Disney dresses and masks for his big day. The princesses will include Belle, Snow White, Elsa and Cinderella, Christos will be Woody the Sheriff and the guests can pick and choose from a range of masks – including Mickey, Donald, dwarfs and Princesses. I am hoping that surprising him with his favourite characters will be well received and that he won’t just want us to wear normal clothes. He does this thing when he gets too excited where he hides things for months until he’s ready for it – I’ve mentioned our DVD fights before. We are also expecting lots of birthday cards from Switzerland from people who found #Project324 and wanted to send him an actual card instead of an email – how amazing??

FAB 2: On April 2nd 2015 16,000+ buildings joined Light it Up Blue and raised awareness. This year, on April 2nd, 157 countries lit it up Blue for Autism Awareness. What’s amazing about 2016 LIUB is that it was not limited to landmarks, local businesses, houses, hotels signed up for it and lit it up blue for Autism. That is awareness in practice. Organisations, campaigns, fundraising, and the tireless community that dedicates every moment to raising awareness made the topic so visible that local businesses pledged their buildings for Autism Awareness. You can see the breathtaking pictures here.

FAB 3: Another great thing that has been happening  was the first  AsIAm conference, which took place in Dublin on the 16th April. AsIAm wanted a conference where it could bring people together and promote the idea that every single person with Autism must have the opportunity to meet his/her personal potential.

FAB 4: In Tampa Bay, Florida, small businesses have announced that they will be partnering with the University of South Florida to become more autism-friendly. This will include customer services, AND an internship programme. “All of the students internships are in careers they think they might be interested in when they leave” said Susan Richmond, head of The Learning Academy at the University of South Florida. The Academy provides a custom transition program to prepare adults on the spectrum for employment. Kaleisa Tea Lounge on Fletcher Avenue in Tampa was one of the first to enter the programme. Owner Kim Pham is proud to talk about her new intern: “He is great. Really hard working, really funny, and he fits in really well with everyone on staff. You can’t even tell he’s an intern. Right away he rolls with the punches. When we get really busy he runs around hectic, and really pitches in, working so hard, we appreciate that”. Didn’t use the word Autism, difficult, didn’t have lower expectations – he’s just another intern.

FAB 5: After his birthday, I will be joining Ambitious About Autism and writing for the UN’s 2016 Theme: Families, healthy lives and sustainable future. This is the International Day of Families which is celebrated on the 15th of May every year. The Day was proclaimed by the UN General Assembly in 1993 with resolution A/RES/47/237 and reflects the importance the international community attaches to families. The International Day of Families inspires organisation to promote a series of awareness-raising events, including national family days, workshops and conferences, radio and television programmes, newspaper articles and cultural programmes. So find out whats happening in your area and join in. This isn’t just about Autism, it’s about families.

Pictures from #Project324:

Cyprus sipped on wine to celebrate their final card:

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Ukraine was chillin’ with some coffee:

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Dubai was a bit famished after trekking in 40 degrees leaving cards everywhere:

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and Belgium got creative:

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#Project324 – Week 7

Only 3 more weeks to go. So far, we received 2 emails from people who found cards in New Jersey & 1 from Cyprus; 17 emails from people who have read about the project; 3 articles have been published (Ambitious About Autism, Vantage Magazine, Ant1wo); and I have loads more pictures to share 🙂

Before the pictures though, as this month is known as Autism Awareness & as this project is about Awareness, I thought it would be appropriate to highlight what we want people to be aware of.

  1.  Be aware of what Autism is: Autism is so many things, it’s a spectrum condition which spans from non-responsive to invisible. In the UK the numbers are 1 in 100, in the USA its 1 in 68, and on the whole, 1% of the world population has been diagnosed as being on the spectrum. Awareness means knowing what Autism can be & not categorising it under learning disability and mental health exclusively; or even at all.
  2. Be aware of the healthcare needs: I’ve talked about therapies, endorsed and alternative, diets, pills that we had to go through when Chris was growing up. It’s important to know what Autism needs before we can assess what is lacking from healthcare today. It’s important for community members to know what therapies people with Autism undergo, along with family members, because it will give you a different perspective when you encounter them. If you know a fraction of the abundance of things we have to consider daily, and the money spent on it, maybe next time you see a family in a restaurant struggling to keep someone under control, you won’t judge them, or get angry, or stare; because you’ll be aware of a reality far away from yours.
  3. Be Autism-Friendly: 2015 was a big year for Autism. We have seen a steady increase in initiatives to increase employability options for adults with Autism (Microsoft, BBC, Apple, FR, Army) as well as a number of programmes filling up TV time. If you want to watch any:
    1. Understanding Autism http://www.bbc.co.uk/programmes/p0375ytl
    2. *The A word http://www.bbc.co.uk/programmes/b0759b0c
    3. Girls with Autism https://itvstudios.com/programmes/girls-with-autism
    4. Autism and Me http://www.bbc.co.uk/programmes/articles/4xQRdTyJC1bhNj5kXN4xqs9/autism-and-me
    5. The Autistic Me http://www.bbc.co.uk/iplayer/episode/b00m5jb4/the-autistic-me
    6. *Extreme Love: Autism http://www.bbc.co.uk/iplayer/episode/b01gk4xc/louis-theroux-extreme-love-1-autism

    The exposure has led to Autism-friendly parks, cinema screening, West End and Broadway shows and police training.

  4. Be aware of adults and Autism: Autism doesn’t go away when you grown up, its a friend for life. Because Autism is so ‘new’ there is very little research about Autism in adults and old age. We are wanting awareness for children with autism as well as adults/senior citizens. Taking care of Autism in older generations is critical at this stage because of how little we know about Autism in general. Seeing how it progresses and assessing the needs of the generations that were dubbed ‘weird’ instead of being provided appropriate support (whether educational or personal) is invaluable information.
  5. Be aware of Bullying: In 2015 Autism Together reported that 80% of respondents to their study, over the age of 16, reported being victims of bullying by friends. Abuse can range from verbal to financial, psychological and sexual. Bullying can occur because of a misunderstanding between the bully and the victim, or by the bully taking advantage of the disadvantage the victim is under. Bullying is one of those things that we cannot combat from outside, no matter how hard schools try, or peers try. Ignorance is the cornerstone of bullying and it’s up to you to end it. Learn and teach your kids, family, neighbours, friends, passer-bys. No one deserves to be mocked, thrown in bins, or being made to feel useless.

Pictures from #Project324:

Cyprus:

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Sri Lanka:

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Canada:

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UK:

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USA: 

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And one mid-air travelling from Australia to the UK 🙂

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Wear Blue on April 2nd 2016

April 2nd is World Autism Awareness Day. Last year, almost 5,000 people took part in The National Autistic Society’s first ever World Autism Awareness Week and raised over £235,395 to help autistic people and their families across the UK. Last year, countries around the world lit their buildings in blue in honour of the day. There were more activities, fundraising, events, posts, and publicity for autism than any other year I remember. 

So, as is customary, here is what you can do for Autism Awareness Day. 

  1. You can pledge to Light it up Blue in your community here. Estimated time for completion – 1 minute, Effort: 0
  2. You can sign up to support Ambitious about Autism’s campaign #EmployAutism on social media by signing up here. Estimated time for completion – 1 minute, Effort: 0
  3. Pick up a book on Autism: 17 books about autismEstimated research time: 5 minutes, Effort: Reading and learning
  4. If you have a local business, carry the Autism Awareness ribbon Estimated research time: 5 minutes, Effort: Printing it and sticking it up
  5. Print and Share Friendship Fact Autism Awareness Bookmarks Estimated time for completion – 1 minute, Effort: Cutting them up
  6. Register and download this pack by the National Autistic Society filled with inspiration and fun ideas to get involved. Estimated time for completion – 1 minute, Effort: Reading and attending
  7. Visit one of the pop-up shops organised by the NAS – Each pop up will be unique chance to find out what The National Autistic Society’s enterprises and art services are producing in your local area. Look at times/dates here. Estimated time for completion – 1 minute, Effort: Reading and attending
  8. Meet, greet, speak to, take out someone with autism. Estimated time for completion – 1 minute, Effort: 0
  9. Find out what your neighbourhood, community has planned for this day and attend with your family. (Australia, Scotland, Canada, Wales , Cyprus) Estimated research time: 5 minutes, Effort: Atending
  10. Wear a blue t-shirt and make sure your friends, coworkers, or classmates do, too!

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#Project324 Week 1 – The ‘first’ boy

Week 1: I sent out the rest of the cards to Greece, Switzerland, Sri Lanka, Turkey, Iraq and Ukraine. Some have already been distributed! I hope you’re looking out for them wherever you are.

The end of week one made me think of the first autism diagnosis – so I did a bit of digging.

Donald Grey Triplett was born September 1933 in Forest, Mississippi and has the title of being the first person to be diagnosed with Autism. Today, he is 82 years old still living in the small town where the first recorded story of Autism began.

Donald was “Case 1” among 11 children who were studied by Baltimore psychiatrist Leo Kanner. In his scholarly paper, which you can read here (http://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf) he explains how he was witnessing ‘fascinating peculiarities‘ in his patients and that there was no research on in any medical textbooks. He dubbed it “infantile autism“, which was later shortened to just autism.

John Donvan and Caren Zucker are the authors of In A Different Key: The Story of Autism in which they get to know Donald and follow his extraordinary life. Donald was the child of Beamon and Mary Triplett, a lawyer and a school teacher. His behaviour in early years is described as ‘profoundly withdrawn‘, ‘tuned into a separate world with its own logic‘, and ‘its own way of using the English language‘.

Donald seemed uninterested in what his peers were keen on according to Dr Kanner’s article. He didn’t care for things like play dates, or a fully-costumed Santa Claus. However, at 2-and-a-half years old at Christmas time, his father reported that he sang carols his mother sung to him only once and he could re-create an the order in which his father had randomly laced beads on to a string once. Dr Kanner reported that Donald learned the whole alphabet “backward as well as forward” and counted to 100 by the age of 3. He had tantrums and a temper, in fear of being spanked or switched but “he could not associate his behaviour with his punishment“. Words he used were specifically literal and had an inflexible meaning. However, Dr Kanner describes how Donald ‘christened’ his water colour bottles by the names of the Dionne quintuplets (the first quintuplets known to have survived their infancy). Annette for blue, Cecile for red etc and then he explained that Annette and Cecile make purple.

In mid-1937, Beamon and Mary were ordered by a doctor to send 3 year old Donald to an institution. They visited him monthly. In late 1938, after one of their visits they did what they wanted to do all along; they took Donald home with them.

This is where Dr Kanner first appeared in Donald’s life. Dr Kanner mentioned how unsure he was about which psychiatric “box” Donald fitted into, and had to investigate and compare extensively before publishing his ground-breaking paper establishing autism as a new diagnosis in 1945.

That’s it – that’s how this decade-long struggle begun. With dedicated parents, a community that embraced something unique and a doctor who looked deeper.

Today, Donald lives in the same house he grew up in, in a community where everyone knows him, with friends, a Cadillac and his favourite hobby – golf. Donald has travelled around the US and abroad, on his own, and has the albums to prove it.

Credit goes out to his parents, who worked tirelessly to help him connect with the world around him, to give him a language he could communicate with, to help him learn to take care of himself. The recorded efforts of this family are a cornerstone of the autism community we have today, and they are role models to the families of Autism. Credit also goes out to the people of Forest, Mississippi, Donald’s community which made a the humane, probably unconscious, decision to accept him and treat him as “one of their own“; to protect him.

Donald was an important part of this community; he has his school yearbook notes from classmates and friends; he got cheered for his part in a school play. John Donvan and Caren Zucker hope to incorporate the support of the community of Forest, in their movie of Donald’s life.

#Project324 cards are out in the wild. I love how creative these team players are being; leaving cards in menus, guide books, the back pocket of jeans and, of course, in front of an Adele CD.

Cards in Greece

   
Cards in Ukraine

Cards in Belgium

    

Cards in the UK

Cards in Ireland:

   

Cards in Australia: 

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