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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!

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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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#Project324 Week 0

Week 0:

10 envelopes (USA, Scotland, Kenya, Canada, UK, Cyprus, N.Ireland, Iraq, Spain and Belgium) have been dispatched.

The only ones left are: Ukraine, Turkey, Greece, Switzerland, Germany, Australia, Sri Lanka, Dubai and Wales which will be sent this week – as soon as it stops raining and I get my voice back so I can go to the post office.

This is Week 0 because the cards haven’t been received just yet, there’s a last batch to cut up and I need to get more chocolate to put in the envelopes. Week 0 is being used as the week to alert people to the project, it’s being promoted, documented and finalised.

The project will launch officially on Tuesday 1st of March 2016 when I hand over the last two envelopes to Wales and Dubai. Then, I will have none left and it will be out of my control. I decided that I won’t be distributing any cards myself. Mostly because, I think that if I saw someone throw it away, step on it or just rage about it, I would probably retreat under my duvet until May. I’m too involved in this to rationalise and tell myself that people don’t read stuff any more.

The cards have started appearing in Belgium, Spain, Scotland and the UK.

Week 0 has begun with 12 emails in the inbox, 15 retweets, 1 pro bono offer 2 magazine articles (ant1woomonoianews.com) and an interview in the making. Now off to London for a week of exams – will recuperate at the end of Week 1.

#happybirthdaychristo in Scotland