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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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‘Tis the holiday season – no Singing


I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car. (Car Routine)

This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.

Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

I’ve mentioned before how we are t allowed to sing; ever. You can’t even hum, or whistle, or mouth the words. Mum got a sore throat once from singing so much and so loud when Christos wasn’t in the car. Even when I’m alone I try not to sing, I’m so scared he’s lurking somewhere waiting to make me apologise for singing. At the pool he likes to have music on, so I tried to get all my humming and whistling done when he was underwater. I mean, we don’t sing that good and most of the time I make lyrics up but he doesn’t like us singing because he enjoys the music so much. So he’ll say “Akouo” which means “Listen” only, don’t sing and ask us to apologise. This is what’s happening in this video.

 

 

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‘Tis the holiday season – Hungry Hippo

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

In the previous post he was waiting for his favourite dish – spaghetti with tomato sauce and halloumi – here he is devouring pasta with cream and salmon. He enjoys every bite, i think he’s happiest when he is eating – just like his sister.

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‘Tis the holiday season – Just a boy

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

Autism isn’t a disability, it is a difference in character.

Christos is just like any other boy – he likes tickling, making jokes and throwing mum off her floatie. Or just enjoying the pool on a hot day, at 16.30; not earlier , not later. 

 He also likes to help in the supermarket. While we are browsing and shopping, Christos will find any item that is out of place and put it back neatly. Here he is helping his nan:

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‘Tis the season for holiday – #Happy

I am in Cyprus for two weeks. During this holiday I will be posting videos of Christos’ behaviours.
It’s unfair to ask for awareness by just writing about it. I want to show you what I mean when I say I cant sing in the car; his daily routines; a tantrum; the repetition. If you find it uncomfortable then it’s working, keep watching and keep in mind, this isn’t out of the ordinary. This is every day, this is what it’s really like to live with someone with Autism. This is what Christos is like.Don’t feel uncomfortable, don’t stop watching, don’t feel pity; just learn.

This is happiness. He is waiting for his favourite dish, spaghetti with tomato sauce and halloumi. He is laughing for no other reason other than that he is happy.

This is Christos’ favourite song is “Take me to Church”. We had to stay in the car until it finished and he was bobbing his head so I thought I’d video us.