0

Christos’ dental journey

I recently got a message from Christos’ dentist, Ioanna, to tell me about his most recent visit and the progress he has made. I also wrote about one of his visits in 2015 – Back to the Dentist. I asked Ioanna if she would be willing to contribute to this blog and here is the result.

My first encounter with autism was 15 years ago when Christos was referred to me by his family dentist. He was the first child on the autism spectrum I had in my private practice as a young pediatric dentist. I knew nothing – as I realised later – about autism, but Christos inspired me to get involved and learn as much as I could.

And that’s how I was introduced to the world of autism. I am so lucky to have had the best guides! Unique Christos and his special family!

He was only 4 1/2 years old when I met him. His dental problems, the behavioral restrictions due to his young age and the difficulties due to autism made it easy to choose a full dental treatment under general anesthesia. The first goal was achieved. Our next goals – and most difficult ones! – were helping Christos brush and have good oral health as well as gaining his trust and cooperation for the frequent dental visits over the upcoming years.


Dental treatment doesn’t differentiate between people on the autism spectrum and other patients. Rather we have to be aware of behaviour management and accommodate the needs of the patient. This is a real challenge! Sensory disorders make it even more difficult. What I’ve learned, in the last 15 years, is that I have to be armed with patience, understanding, persistence, flexibility, creativity and love when I work with people on the autism spectrum…and with people in general!

In the beginning, I used to see Christos every 2-3 months. This was to help him become familiar with the dental office and, of course, with myself. I could see how hard it was for him to adjust and take in all those new things; smells, lights, doors, drawers!!!!  I must admit, it was hard for me too. I had to interpret his behaviour and the only reason I managed to do it was because of the great help of his parents. I felt them to be some kind of translation between me and my patient!

It took Christos 3 visits to finally sit on the dental chair and open his mouth. I tried to teach him and his parents how to brush. His mum and dad were so brave to fight that battle at home! (I think Dora described it once in one of her articles – Thinking about the things you don’t think about: b) Attack of the Toothbrush). You can see why brushing can be a real struggle for people on the autism spectrum! After that we managed to put some fluoride varnish – that’s one with the strange taste! – on his teeth! 2 1/2 years later we managed to do the fissure sealants on his newly erupted first permanent teeth! That meant that he would have to sit for a significantly longer period of time with his mouth open, tasting too many strange things with odd tastes and feeling all the weird textures. But we made it!

A moment I won’t forget is when I got a phone call from Christos’ dad one weekend. He was so happy and proud that Christos said my name while showing his moving tooth!!! This was Christos’ way of explaining that something was going on with his tooth and it was his dentist’s job to take care of it. It was another milestone in his personal progress and I was so excited and happy for him!

Another memory I have is of how anxious I was when we decided to extract two teeth to make space for the new ones. We needed to make sure the teeth settled and were arranged well as it wouldn’t be possible for Christos to have braces. I had to give him local anesthesia with an injection. However, once again Christos surprised me. He acted like it wasn’t a big deal at all! His parents and I were so relieved and so proud of him!

Step by step, Christos knew he had to accept and follow my rules; but I also had to follow his! I couldn’t break some of his routines. I had to accept and try to understand many strange (to me) behaviors and obsessiveness, especially at the start. For example, he wanted to drink water immediately after the fluoride application and throw the plastic cup in the dustbin. During every appointment I would try to convince him not to do that and …guess what? We made it last time!!! After 15 years!!! What did Christos teach me? Never give up on my goals! Keep trying!

His last visit also came with some very interesting parts. Christos took on the role of a role model for another special boy! The boy who had the appointment before Christos came back into the room when he saw him entering my office. I asked for Christos’ permission first but he didn’t look bothered by this other new person in the room. From Christos, this is a permission! If he didn’t want someone there, he would make it very clear! At the end of our appointment, I asked Christos’ mum if we could take a photo to send it to his sister with his progress. To my surprise, she had already done it!!! Not only that, but after the appointment I also got a warm sms from Christos’ dad! The people around him are so sharing, so loving and so alert.


A couple of years ago, I was part of an internet conversation with colleagues from other parts of the world to share useful experiences and knowledge about autism and dental treatment. I got a message from one of them saying “You don’t want autistic patients!” His words shocked me. I thought about my long journey and realised how valuable it was for my career, my personality, my view about people and life to meet Christos.

One of the interesting parts of my job – and it’s one of them that I love! – is that I can follow the changes in the life of my young patients and their families. It’s amazing! I had the chance to see Christos growing, starting to talk, improving his communication skills, being happy after his trips to meet his sister, being a teenager with a big change in his behaviour and becoming an adult. His family shared some of their worries, some of their endless efforts to give support to their hero, some of their philosophy about life with me.

Christos gave me the first piece of the autism puzzle and it is a precious one! I want to really thank him for it!

Thank you Ioanna for your words. But mostly, thank you for your patience, kindness and love over the time my family has known you. I can only say that I hope you are a role model to your colleagues in the same way that you are an inspiration to those around you.

PS: The green thing Christo is holding in the photo is a mirror so he can watch exactly what Ioanna is doing. Did someone say control-freak? 

Advertisements
0

Atypical:

Just binge-watched the much anticipated Netflix Original series ‘Atypical‘. The series follows Sam, who is on the Autism Spectrum, on his journey to finding love.

Even though its sold as a comedy, the show made me ugly-cry a lot more than it made me laugh out loud. The show presented many big and small moments that I have experienced first hand. The autistic lead is sincere and very well portrayed. You can see the extensive research that went into developing the ‘Sam’ character and he delivers quite well, in my opinion. Obviously, not everyone on the spectrum is like Sam, but I think this series is more about the family rather than the lead.

I can’t think of anything I disliked about the show, although you’ll hear a lot of self-proclaimed experts throwing shade at every opportunity. To them I say, appreciate the effort of incorporating an autism story into something as mainstream as Netflix. To you I say, watch it. Remember, not every person on the spectrum is like Sam, but this is a good starting point.

What was the inspiration for the story?
Robia Rashid says: “After working in network TV for a while, I just wanted to do something for myself. I was very aware that more people were being diagnosed with autism, and it was interesting to me that a whole generation of kids were growing up knowing that they were on the spectrum and wanting independence. That point of view seemed so interesting to me — and such a cool way to tell a dating story. You’ve seen the story of somebody looking for independence and looking for love before, but not from that specific point of view. I really was drawn to that. I was a little annoyed because it sounded really hard! I had to do a lot of research. A turning point was when I figured out that I wanted to use Sam’s voice-over. But it was both helpful and harder because it made the project much harder to write.”

Your son has the same desire to be loved that we all do.” This was the sentence in the trailer that made me want to watch Atypical. (I write about love here a lot)

I saw a lot of myself and my family in the Atypical family. The mum’s passion, making her life all about autism for so long that she forgot to live her own. The dad’s sweet disposition, feeling a disconnect to his son but making silent gestures to show his everlasting dedication to his family.

And of course, the sister. Sam’s sister spoke to me more in what she left unsaid. Watching the show as an autism sister I saw in her all the thoughts I have had in the last 19 years. I have so much in common with her and her family life. Not the obvious, as I am anything but a track star. Her triumphs are overlooked, her life is dependant on her brother’s and her future hangs in the balance. Sam says his sister never lets him get beat up as she instinctively steps in front of him when someone asks what’s wrong with him. Yet throughout the series she playfully punches him, hits him, climbs over him and jokes about his quirks. Casey (the sister) is so well written as a character she made me cry every time she was on screen.

Casey’s success is overshadowed because her family is preoccupied with Sam. When she meets up with them, she doesn’t hold a grudge. When her big news is obscured by what will happen to Sam, it’s her boyfriend who makes a scene about it to the parents. Casey knows Sam is paramount, she knows because she wants him to be. She struggles with deciding whether to ‘move on’ and do what’s best for her or to stay and help Sam through the hard times coming in the household. I lived this struggle. She is fearless when its comes to her brother and telling people to back off. She is his.

I can’t wait for season 2 of Atypical and I know it will be just as touching as the first. Well done Netflix. Well done to Robia Rashid for taking this on and doing it so well.

0

5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

0

The Biology of Autism

  1. The gut.

You may recall me talking about a ground-breaking new study in January (Hope in Poo) where alterations in the gut ecosystem were linked to autism traits. These scientists used Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) which was tested and proven to improve gastrointestinal and autism symptoms.

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

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

2. Stem cells

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

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

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

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

3. Genes

 Autism Speaks‘ MSSNG Project, has highlighted an additional 18 gene variations linked to the development of ASD. Nature Neuroscience Journal, published a report on this project which found that the 18 newly-identified autism genes can be instrumental in understanding the pathways in the brain that affect how cells ‘talk’ to each other. Furthermore, the report talks about ‘copy number variations’ and abnormalities, which are  essentially copy variations found in areas of the genome once considered to be ‘junk DNA’. These areas, full of the copy variations, help to control when and where our genes switch on and off and appear to be crucial to brain development and function.

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

4. Mutations

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

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

Conclusions:

17498754_10155029868955030_8234493783036613159_n

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

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

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

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

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

0

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.

The Golden Hat11752398_10153455833490030_5815753847288641852_n
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!

0

Hope in Disney

553829_10150760901390030_1000986510_nI watched the Beauty and the Beast trailer on TV last night and I felt so emotional. People will say its cliche, or call me a princess because I love Disney films. I watched them all, every day, I know all the songs, the punchlines. It’s a world away from home. It’s how Christos and I bonded when we had nothing else in common.

Facebook drowned me in memory pictures this morning and reminded me that 5 years ago was the first time we took Chris to Disneyland Paris. I had been there the year before to scope it out. I was 22, he was 13 and my mum was exhausted. I had very little patience back then so shout out to my mum for being a saint and dealing with an overgrown teenager and an autistic son all on her own.

He was overwhelmed when we walked in. He didn’t know what was coming, what to expect, what to listen to or see first. The crowds were overbearing and we held on to him tight. By day two he was acting like a local. We were getting off the shuttle one morning and he fell. Suddenly in our heads alarm bells are ringing, the National Guard is summoned. You can see from the pictures that he was a big 13-year-old. He fell, but he didn’t cry. He limped because he still wanted to go to the park, however, he kept wanting to sit down. So, we went to the medical centre and we waited to be seen; after about an hour they just said it needs rest, so we sighed with relief, got him a wheelchair and used it as an excuse to give him anything he wanted. Every day at 5pm he wanted to go watch the parade, he identified his favourite rides, which we visited every day, his favourite crisps and the best ice cream. I won’t repeat myself, you can read about our Disneyland Adventures (volume 2 in 2015) in the  Mickeyminniegoofydonaldydaisypluto series of posts.

This month’s hope is also found in Disney.

Growing up with a brother that didn’t respond to his name, want to play with you and who broke things or rolled around on the floor in anger left little room for bonding. Don’t get
me wrong, I was connected to him from the day we found out he existed, but he never seemed to feel the same. Back when VCR’s were a thing, we had 2 drawers, a big cabinet and a small cabinet full of tapes. Mums family are all film fanatics, they love to chill out watching something and we have definitely inherited that habit. We would record them when they were on TV and then label and put away for watching later.

Despite his aversion to playing with me, he always joined me for a movie. I would put it on, and it would get his attention. Maybe it was that we all went silent when it started, maybe it was the music, the funny voices or maybe it was how much we laughed and how the atmosphere changed when a Disney song came on. We watched them religiously, nearly every day. On weekends we would watch Mickey Mouse or Donald Duck on TV and then in the evenings we would watch the Hunchback of Notre Dame, Aladdin, Hercules, Toy story, Lion King, Snow White, Sleeping Beauty etc. He picked it up quite fast and soon he knew the scenes off by heart. But when Frodo, Jafar, or Maleficent, or the Evil Queen were making an appearance he would hide behind the couch;  listening, but not looking.

Soon after, he started choosing what we were going to watch, he started fast forwarding the parts he found scary and he made sure each box had the correct tape in it. Cute right? No. He also needed all the stickers and covers to be perfect, which they were not because we used them every day. He wanted us to cut off the worn out bits, but cut them straight, and cut them right otherwise you needed to cut more and more and more until there was no sticker or cover left. He would also watch the whole movie, and then would rewind it and watch it in reverse. And because our VCR was old, some of the tapes got caught and were destroyed. My tapes. My Disney tapes. My escape. My world, the one without autism, the one where I was in control because I knew every word and I could count on all the happy endings.

I’m not bitter. Well, maybe a little bit.

It didn’t stop when DVD’s came out, he still ripped them to shreds, he scratched the discs, he ruined the plastic covers. I remember once, I had cleaned one of the discs with a cloth about 150 times. He would look at it touch it, and hand it back. So after the 151st time, I broke it in half. I was like “There, now it doesn’t matter if it’s clean”. Petty right? A bad sister right? The thing is I never treated him differently as a little brother because of his autism. I’d still deny that I had made him cry when mum would ask, I’d blame all broken stuff on him. I stole his food, he broke everything i owned. We yelled at eachother until we cried and we slapped eachother around a little bit. I’d put my foot in his face or throw my socks at him, and he would keep me up all night repeating words until we were both exhausted. And while this is how neurotypical siblings would bond, it wasn’t the same for us.

428326_10150752441475030_1462595363_nI remember how much I missed him, how my friends’ little brothers were so close to their sisters and how much they looked up to them. When I couldn’t get him to hang out with me, I would put on a Disney tape and put the volume right up. I’d hear the game boy music stop, the rustle of a blanket and tiny footsteps running up the stairs. And he would sit, ask me to apologise, turn the volume down and watch the movie with me.

I see a lot of Disney headlines that remind me of those lazy afternoons singing about a whole new world, or those Friday nights at our nans repeating the same old Lion King jokes with our granpa.

For example, Disney’s hit new musical Aladdin, playing in the West End, has announced its first dedicated Autism-Friendly performance will take place on Tuesday 29 August 2017. Wicked did this last year and The Lion King is staging its first Autism-Friendly performance Sunday 4 June 2017.

You may have heard that ‘Life, Animated’ was nominated for an Oscar this year. ‘Life, Animated’ follows the Suskind family and its unique way of communicating with their son — through Disney animated films. Inside his head, Owen created his own stories where he and Disney sidekicks battle villains who represent bullying, depression and even autism itself. The director has said that “Life, Animated” is a testament to the strength of family, the imagination of childhood and the power of story; “Owen is living a meaningful life and it’s not up to us to decide what that is. I’ve never met anyone more happy and content and open and honest about the world around him.” You can read more about it here and you can download it on iTunes or watch the trailer here.

Disney films don’t always have to be about the princess.

3

#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:

13054538_10156832512255594_1706095572_o 13064126_10156832512335594_290710273_o 13090817_10156832512170594_323274420_o

13090801_10156832512375594_1715011885_o

 

 

 

 

Paris:

13072039_10208884457246859_644726345_o

 

 

 

 

Wales:

13105993_10201764505311119_1004376142_o