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I Believe In, Advocate For, Support & Love Someone with Autism

Autism Canada turns 40 this year! 40 years of support to the Autism community; 40 years of fighting for rights & awareness; 40 years of keeping hope alive.

I came into contact with Autism Canada through Twitter, when they retweeted me in October. It was so exciting to think Untitledthat an organisation like them would look and read about my brother. We have stayed in touch since and I’ve met some lovely parents and a sibling; all this through one retweet.

Autism Canada has now launched their “I Believe in, Advocate for, Support & Love Someone with Autism” campaign which sets out to prove that this saying is much more powerful than words.

These words give strength and bring hope to the future of those living with autism and their families.

You can see more about their campaign here: http://teesforthepeople.com/products/i-believe-in-someone-with-autism-2016
uploads-5802-11ab4b7b-65d3-4cba-a63b-d5217c90d02d-model+in+blackThe thing about awareness is that you have to put yourself out there to make it happen. That’s why these t-shirts are such a great idea! If people get them, wear them in their every day life someone will catch a glimpse of it, another might ask a question; that’s how we achieve awareness. I’ve already ordered two for Chris and I – we’d do anything for a good cause, would you?

Wear the t-shirts and help the world “See the Spectrum Differently”.

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2016 Do Not Do List

Trying not to look at Autism as a bad thing can be a full time job. I was raised with this mentality that he is who he is, he’s your brother, love him. So, when he was annoying, when he yelled, when he scratched, I didn’t think “Oh it’s because he’s autistic”, I thought “I’ll get you back for this!”. He’s a little brother, he’s supposed to be annoying and it’s not because he’s on the spectrum. What people don’t understand is the damage these excuses can cause. Instinct will tell a family member to pounce when their own is threatened, not make up excuses for their behaviour. But somewhere along the line, the stigma weighed down on Autism so hard that the balance shifted from primal to subdued.

It’s difficult being an Autism family because of the Autism, but also because of the way society treats you. So, here are a couple of things that we did that may help you embrace the lifestyle you have been thrown into instead of condemn it.

  1. Speak about them like they are not in the room: It is so easy to do. When someone is in the room and they don’t reply to their name, they are staring at a game or lying on the floor; you don’t think they can hear you, because if they can, why do they not respond? Listening isn’t about responding. Listening is just listening; to everything. It doesn’t matter whether they turn around when you call their name – they can hear you there’s just too much going on in their brain at that moment that you are not a priority. If they have sensory overload, it might mean that a noise, a feeling, a colour is even more powerful than your voice in their ear. Don’t speak like they are not in the room – and if you have to talk about them make sure to be close to them, touch them so that they know they are acknowledged. This way they know you know they are there. This might stop you from complaining, and saying things that you wouldn’t dare say if your child was not on the spectrum. They can hear you; whether it’s praise, complaints, crying, yelling, lying.
  2. Blame it all on Autism: Their anger that the DVD is sticking isn’t because of their Autism; it’s because it’s annoying. Their irritation when it’s warm and avoiding hugs or touch isn’t because of their Autism, it’s because it’s irritating being hot and uncomfortable and the last thing you need is another warm hand around you. When they need ask where you are taking them, it’s because they want to know where you are takinf them. When they play the same song over and over and over again, it’s because they love that song. If they are good at math, if they don’t like small talk, if they are honest, if they are anxious, it’s not their Autism it’s their character. Make sure you and the people around you understand this so that they can grow up in an environment where they are not held back by their Autism.
  3. Hide: Be proud of your autism family.    t’s a lesson; it makes you stronger; it gives you dreams, ideas, perspective; it makes you appreciate little things, like silence or a lazy Sunday morning; it helps you empathise with the people you come into contact with everyday; it makes you a teacher; it makes you read, research; it makes you risk, dare and defy. Flaunt your extraordinary kid, show the world how living with Autism is so difficult but that you are handling it. Build up their self-esteem by working on yours; don’t let the world let you feel like you are deficient. Show the world that it would be deficient without you, and your family.
  4. Hate their Autism: Don’t hate their Autism. Their Autism is them. Loving them but hating their Autism is like saying I love you but I hate your character, I hate the quirks that make you unique, I hate how difficult it is to be around you. You don’t mean it, but saying i love you despite your Autism, or i just hate Autism can be so hurtful, so damaging to their development. It’s like telling them that there is a part of them, that they cannot change, that you hate.

Autism does not define them. Don’t let it define your love for them – define their Autism with your love.

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Autism Advantages

Controversial?

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” – Neurotribesimage2

Autism is either genius, aka unworldly/Rain Man – who wasn’t actually autistic FYI, or isolated, aka unsociable.

Laurent Mottron, a psychiatrist at the University of Montreal led research in the last year which has suggested that an autistic brain “prefers” some information over other; like verbal and social cues. It surpasses what is right in front of it and sees beyond it, that’s why some are so prone to understanding codes, patterns and numbers. This is because an autistic brain has a tendency to concentrate more on visual processing and less on tasks; ie planning or impulse control. Mottron found that people on the spectrum are up to 40% faster at problem-solving, in 2009; he calls them “perceptual experts”, which sounds much better than “weird” no?

His team includes researcher Michelle Dawson who is on the spectrum. He says in The Power of Autism that “Whereas the methodologies used in studies of face-perception in autism are for me terribly similar, Dawson can instantaneously recall them.” This is because an autistic brain can retain information that neurotypical brains will gloss over.

But! This doesn’t mean that people on the spectrum are all practical – some of these perceptual experts can be creative. You kind of think of creativity being abstract, but it’s not. Creativity is being able to think outside the box, it’s being able to ignore the obvious solution and to create alternative solutions. A paper called “The Relationship Between Subthreshold Autistic Traits, Ambiguous Figure Perception and Divergent Thinking” was published in the Journal of Autism and Developmental Disorders in December 2015. It says it “investigates the paradox of creativity in autism“. When did Autism and creativity become enemies? Who decided that? Well, this study took 312 individuals, 75 of which had a image1diagnosis, and tested whether people with autistic traits can be creative or whether they are at a disadvantage to neurotypical individuals.

Let’s put it this way so you can make up your own mind. The participants were asked to think of as many non-obvious uses for a brick and a paper clip as possible. Neurotypicals: used the paperclip to reset their iPhones; Neurodiverse: use the paperclip as a weight for the front of a paper airplane, or for heating up in order to suture a wound. What would you do with a brick and a paper clip? My first thought was – Oh i bet that brick will be heavy, I could use it to CRUSH the paperclip and then put it back together. No, seriously, that’s what I thought, it’s not even a use.

Dr Mottron believes that by continuing to see Autism’s differences as defects, researchers fail to fully understand the condition (Autism Can Be an ‘Advantage’), intellectual disability is not intrinsic to Autism. So, maybe education after diagnosis should be focused on figuring out each persons strengths and then allocated resources into harnessing and developing them with tailor-made programmes for each person on the spectrum. Rather than wasting resources on erasing the differences between neurodiverse and neurotypical, we should be helping them flourish.

Autism is diverse; there are people that are good at some things, and not at others, and  people that are good or bad at everything. There are people that are practical and people that are creative. How is that a different form just being a human? The sooner you start thinking of Autism as a character rather than a disability the sooner we can erase the stigma. There are so many articles and research out there just waiting to be read, waiting for you to find it instead of reading about Kanye West and Amber Rose.

Learn, listen, educate yourselves about Autism.

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WICKED autism-friendly

The Wizard of Oz is my favourite musical/film EVER. We went to Australia to visit family in 1995 (correct me if I’m wrong mum?) and I watched this a lot apparently – so much, that when we were leaving my auntie gave me the copy of the tape, yes a videotape, to take home with me. I still remember the greyish cover which was held together only by vast amounts of tape by the time I finally parted with Savannah Stevenson and Emma Hatton in the West End production of Wicked. Photo: Matt Crockettit. I re-watched it recently and remember all the songs, all the lines, all the characters. I loved it the most because of the Wicked Witch of the West – she was so bad. Margaret Hamilton gives such a typical portrayal of the “bad guy” there was no way anyone could like her or feel remorse when she melted into a puddle of green goo. The flying monkeys, the horses that change colours, the ruby slippers, the audacity of the wizard, the lovable lion and the high-pitched munchkins and the wicked music combined made my favourite picture of all time. I used to watch it so often that Chris got into it too – he hated the Wicked Witch, when Dorothy landed in Oz and crushed the Wicked Witch’s sister he would always be so surprised and yell ‘ouch’. He would run out of the room when she was on screen and when we watch it now, he remembers which scenes she’s in and leaves before she even arrives.

It’s such a beautiful story. A girl from a loving home runs away only to find that she would do anything to find her way back. The story of 3 characters, each trying to conform or break out of the box that defines them. They follow the yellow-brick road to find that what they’ve been searching for was in them all along. Now, you can translate that into whatever you want but for me it was about loving what you have, accepting who you are and realising that the potential is infinite. When I was little it was about the magic, the escape. Now, it’s about knowing that it’s okay to be different, picking your battles and knowing that a victory is a victory no matter how small; it’s the journey that counts. Queue the violins.

The adaptations are endless – The Wiz, The Muppets, Tin Man, episodes in Once Upon A Time, Scrubs, Grey’s Anatomy – and it’s timeless. Then, Hollywood made Oz The Great and Powerful where the Wicked Witch’s name was Theodora and I died.

But anyway, when I found out that there was a musical about Elphaba’s tale I was ecstatic.I saw it in London, 3 years ago today; January 27th 2012 for my birthday. Wicked has announced that it is to hold its first ever autism-friendly performance in May 2016.  West End and the National Autistic Society have collaborated to bring to theatres a performance measured and adapted to an audience on the spectrum. Sound and lighting in the performance have been altered to avoid sensory overload, there will be quiet areas, activity areas manned by trained staff where guests will be able to leave and re-enter the auditorium as needed.

“Autistic people and their families tell us that they would love to go to the theatre but
because of sensory issues are prevented from doing so. Wicked’s production team have taken great care in adapting the show which means that for some, this will be the very first time that they are able to experience the thrill of a live performance.” NAS chief executive Mark Lever.

With autism having a ratio of (more than) 1 in 100 in the UK isn’t it crazy that there are such few West End shows that people on the spectrum and their families can attend without being scrutinized by peers, shushed and tutted at?

“We’r­e delighted to be able to welcome fans of Wicked who wouldn’t normally be able to attend a standard performance, and look forward to what promises to be an inspiring experience for us all.”Wicked’s UK executive producer Michael McCabe

Charlie and the Chocolate Factory, War Horse and Matilda are also staging a relaxed performance for audiences with learning disabilities.

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Hot Sunday

 

It’s Sunday and Chris is with dad. They are up to the usual ‘Dad Routine‘. Playing with flat beans, cooking curry and going for walks. 

They will prepare his meals together, like i mentioned before there is a special recipe for everything he eats and he loves helping and contributing to the process.

They haven’t seen eachother for a while so Christos decided to overindulge and had two plates of curry.. Which turned out to be a little bit too hot for him. In this video, even though his face is on fire, he still smiles.

 

Happy Sunday!

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Army: Enlisting Autism

If I had to make a list of improbable professions for Autism, at the top of my list would be the Army. However, on the 6th of Jan I read an article about Israel’s Defence Force’s “Visual Intelligence Division”. Unit 9900 soldiers act as eyes on the ground for highly sensitive operations, analysing complex images delivered in real time from military satellites around the world. Isn’t that mental? When I think of army, I still think of open fields, Captains riding horses, swords and general gruesomeness.

So, I researched a bit more and found that between 2004 and 2011 in Israel, the number of Israelis on the autism spectrum increased fivefold, with 1,000 new diagnoses per year, according to a survey released by the country’s Social Affairs Ministry. Obviously, that is due to a lot of things; mostly, the scientific advancements that have occurred within the past 20 years which enable diagnosis to be available more readily and accurately now. I wasn’t surprised to read about the stigma that follows Autism everywhere it is. There have been suspensions from schools, mostly attributed to the fact that there are no official special education guidelines for autistic students which the school should follow. That’s why we need awareness – so that we can create a framework for all over the world, so that children on the spectrum won’t be branded as naughty or get dosed up on medication at school. This doesn’t just happen in Israel, this happens in the UK, this happens in the US – children on the spectrum are not provided with the education they deserve.

Ro’im Rachok, which in Hebrew means “seeing into the future” is a programme that is aimed at teenagers/adults with Autism. They recruit graduates and provide them with training for enlistment in the Israel Defense Forces. The programme has already had two cohorts of autistic Israelis who have successfully served as image analysts. Much like any other high risk job there are a lot of tests to overcome in order to become part of the Ro’im Rachok. It’s not like the army goes in and picks up all the autistic kids and forces them to join. In fact, students have to undergo tests and interviews so as to ensure that they actually have the skills to be able to analyse images. Not everyone on the spectrum is a genius, or can analyse pictures. Only 12 made the cut this year.

Israel’s 12 then were hosted by the Ono Academic College, which teaches satellite-image analysis. This is a three-month course which runs three times a year. During the three months, the unit’s commanders begin to train the recruits on how to read aerial maps, amongst other things. The thing that really impressed me was the support provided to the ‘students’ during the initial process as well as the course. They can opt-out at any point, they have a team of therapists who they meet regularly who are there to help them with adjusting to the new routine and dealing with stress. I mean this could be anything from getting to campus for class and to digesting the importance and responsibility of the work itself. They have constant support which is crucial. It’s one thing to start a programme with autistic recruits and it’s a whole other world knowing how to maintain it and reinforce it with the appropriate support.

The final phase, which is also 3 months, consists of professional training and therapy sessions at an army base in Tel Aviv. Then they, and they alone, decide if they are ready for enlistment. So, from recruitment to the end of the 6 months there is absolutely no obligation to enlist. Some may walk away with enriched social skills, enhanced professional training and benefits from the therapy which will lead to a better life, hopefully, for them and their families. They get to go home with a sense of worth – they get to apply for jobs and say ‘Hey, I trained for the army’. They get to go out into the world and destroy stereotypes. The ones that do enlist also have the choice to opt out after the end of each year. Or they can go on to complete the required term of service; three years for men and two for women. Yes, women with Autism can be recruited, trained and enlisted too – why did you think they couldn’t? Ro’im Rachok has had one female soldier to date (2016).

One of the recruits, who is only 21, described the job as sitting in front of computer screens and scanning high-resolution satellite images for suspicious objects or movements; this is decoding. I also found out that Israel’s battlegrounds are very complex and inhabited by civilians most of the time; which I guess is the case in most conflict zones. This is why the job Unit 9900 does is so important – because it protects civilians. The autistic recruits analyse these satellite images, decode them, comb  through each millimetre of the same location from various angles and warn soldiers on the ground of what lies ahead, inform them if there is dangerous or suspicious activity; they are helping prevent the loss of life of soldiers on the ground and civilians.

When you think of Autism – do you think it is capable of this enormous responsibility? Because they are, and reading and learning is the way for you to realise the potential held by these remarkable individuals. Autism isn’t something negative, it is not a disease; it’s a character trait. Ro’im Rachok is already thinking long-term and for ways in which they can train recruits to apply for roles like quality assurance, programming, and information sorting. This expansion by the Israeli army means that the autistic community in Israel, and the world, will get recognition domestically and globally. On a domestic level they are given the opportunity to work, just like with Microsoft and the BBC. They get to become known for more than just their Autism and be welcomed and integrated into their societies.

When the whole neighbourhood suddenly sees their neighbour, a boy on the autism spectrum, coming home on Friday in uniformand hears that they can also continue in these fields into civilian work—it naturally has an enormous influence” – Efrat Selanikyo, occupational therapist at Ono College.

When the whole world suddenly finds out about people on the spectrum that are put in charge of handling situations which carry such great responsibility and excel at it; when they read about how Autism can advance, develop and surpass all the expectations the global community has of them; when they hear stories about how an autistic decoder helped save the lives of soldiers and civilians on the ground; and when they see a picture of an autistic person in uniform being praised for their bravery and service to their country and the Autism community; that’s when we break society’s rules. That’s when we expand our society into accepting people that are unique.

That’s when we become human.

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Legacy

Christos wore the jumper I bought him for Christmas on New Years  – the one that says ‘Unwrap Me’. He said Happy New Year, he said Merry Christmas, he
gave us lots of Skype kisses and then he sat down at the top of the table, had his dinner and then went upstairs to play with his game boy.

What were his New Year’s resolutions? Well he wants to have a Lemon Iced Tea and Garlic Bake Rolls at the airport when I visit in February. I am not visiting in February – this is just something he does. I have two theories on why he does this: 1) He wants Bake Rolls and Iced Tea, which he only gets when he goes to the airport, and since the last time he had them was August, well, he misses those two things; 2) He misses me – I like to believe that is why he has made up a date for me to visit.

That was his new years resolution. Autism is not this pandemonium-spreading ‘disease’, with the correctly adjusted supervision, thousands of hours of hard work, repetition, routine, and cooperation we get to create humans worthy of being part of a society. Every child on the spectrum is different and 2015 has been a great year in terms of Autism News. From my perspective, there has been so much coverage, initiatives, events specifically for Autism than any other year.

The most recent eye-cathcing news is Hillary Clinton’s plan to support children, youth, and adults living with Autism. For those of you who don’t know, this isn’t the first time Clinton has dabbled in Autism. In fact, as First Lady, raised awareness and funding for autism by supporting the bipartisan Children’s Health Act of 2000, focusing on Autism research. In the Senate, she introduced the bipartisan Expanding the Promise for Individuals with Autism Act, facilitating interventions and support for Americans with Autism. She also,  cosponsored legislation in 2006 which allocated a significant amount of money for autism-related programs; research, education, early detection, and intervention. All publicity is good publicity. Now the media is talking about how other candidates in the race will ‘match’ Clinton’s plan. Hell, if that’s what it takes to get the government to look at Autism initiatives then so be it; i’ll take it – we all will. Any initiative is an initiative, any debate is a debate, any research, any failed programme anything is progress.

2016 is a big year. A colleague and I have relocated to Brussels, it’s a Leap Year, the USA might have it’s first female president, another Bush or (god forbid) Trump, Boy George is on the Voice, Christo is turning 18. My brother is turning 18. He will be considered – by society – to be an adult. But what will this society offer him when he reaches adulthood?

What will you do this year to make sure that your fellow humans, your kids, your neighbours kids, whoever’s kids have a smooth and enjoyable transition from teenager to adult? What are we, what is this generation, giving the next generation?

It all starts with reading, listening, researching about, in this case, Autism. Educate yourselves and those around you, learn about Autism and pass on a legacy that will make future generations better.