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Judging me, judging you.

I just finished a session on unconscious bias which was aimed at helping us understand why, despite equalities supposedly being enshrined in law, society is still so unfair. By understanding unconscious bias we can begin to frame prejudice as something we are bombarded with from the world around us and realise that only by developing our response to it can we really eliminate it.

What is unconscious bias? Our background. Our childhood. Our favourite fruit, show and personal experience with a University or a salon or a neighbourhood. Everything around us is made up of societal stereotypes and forced into cultural context because that is how we can even begin to comprehend the world around us. For example, think of these 3 words – pilot, personal assistant, 5 year old. Did you think – man, woman, neurotypical? Of course, you did. I did too.

Unconscious bias has evolved alongside our cognitive functions, our history and our own individual experience over thousands of years. Trying to fight it is helpless, but learning to accept the thought and actively choosing to change it is how we will start to shift the bias for future generations.

Let’s take a child as an example – what do you think of? A boy, probably, around 4/5 years old, maybe just started walking and playing with some sort of toy. You don’t think of an 8 year old girl struggling to spell, speak, eat, or walk – but she’s a child too. So, next time you are speaking to a parent of autism and your mind catches sight of that fictional boy hold the image and open it up. Let the parent tell you about their child’s tantrum, their dietary preferences, what they are learning in speech therapy and let those words shape the image in your mind. Holding on to the original thought means you will think – aren’t they too old for a tantrum? What kid doesn’t like chips? Shouldn’t they be doing more advanced stuff at this age?

Let’s say there’s an adult walking towards you, on his tiptoes, making grunting noises – what do you think of? A man, drunk or on drugs, probably, and it immediately triggers your defence instincts. There’s nothing wrong with this reaction because your survival instinct is too strong to manipulate – it’s been developing for millions of years. Stop judging yourself for judging people on appearance because that’s all the information you have during the split second your instinct kicks in. It’s what you do after the thought that speaks to who you are. You wouldn’t think it’s an adult with autism just walking and stimming for many, many reasons. Maybe you don’t know about autism, maybe you don’t know stimming, maybe you’ve had a hard day – but what do you do when you do realise, or when you know?

I know I use this example too often but let’s think of a busy, long flight and a screaming kid – what do you think? Probably some profanities, judging the parent who can’t ‘control’ their kid, wondering why, of all the planes in the world, it had to be this one. Well after all those thoughts, which will take about a second to form and go through your mind, remember how different we all are. Put yourself in the parent’s or the kid’s position. Maybe you know about sensory overresponsivity (from my previous post *winkwink*) or maybe you just put your headphones in.

Unconscious bias will have an impact on our decisions and actions without realising. We will relate more and offer more allowances to people we know something familiar about – like people who are from the same country or enjoy our kind of music – and we will judge people who don’t like what we think is the bomb.com, like smoked salmon or Stranger Things. We will be more inclined to learn about different abilities if we know people who have them – like autism, Downs or paraplegia – and we will be more sceptical of conditions we don’t understand – like Tourettes or palmar hyperhidrosis (clammy hands or feet).

How we react when we recognise unconscious bias is what we should noticing, passing on to others and using our experiences to shape a new image for pilot, personal assistant and 5 year old. The first step is to stop judging yourself, for judging others. The rest of the steps are up to you.

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21 and Atypical: The stories we don’t tell

I remember so many 2am’s almost drifting into sleep when I would hear Christos whisper “Oh” and wait for me to repeat it. If i didn’ respond he would climb int bed with me until I did. Sometimes I didn’t use the right volume, tone or accent so he repeated it until I did, all night and as long as he wasn’t asleep himself.  By the time 6am came around and all three of us struggled to put his socks on, the right way. They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again. By the time we were ready for school we had already lived an entire working day.

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Stephanos, while in bed at night will hear his mum – or whoever is downstairs – clear their throat and he will run down the stairs, go straight outsidem, lie flat on the ground in the garden and sing a song until he is not upset and he is ready to go back to bed. Just like anyone of us the boys have characters of their own. They get angry when people don’t understand them, when a sound is so loud or a light is so bright that it interferes with their welbeing – wouldn’t you? Sometimes, they shout, scream and lose control – don’t you? The difference is that you can communicate your frustration, you can talk about it and find ways forward.

But what if you couldn’t?

Christos’ triggers could have been anything when he was growing up. We were all learning, trying to get to know this ball of fire that was gifted to us. Sometimes the consequence was a million ‘Ohs’, sometimes it was scratching at a mosquito bite until it was raw. I remember his arms, legs and face bear the scars of his incessant picking at every bit of his skin and tearing off any protection we tried to offer. He twisted his arm, legs and head hair to the point of pulling it off. Other times, he would be hitting his head with a closed fist so hard it left a mark, punching his arms and legs while clenching his jaw in frustration to whatever it was we had done wrong. What could we do? He was obsessed with every little spot on him, us, clothes items around the house. We would wipe and wipe and wipe until our hands we sore but whatever it was he could see was still there. When he became a teenager his frustration grew, and so did he. He is 6ft something and 90kg, he overshadows me at 5.2ft (and whatever weight I am depending on the year) and the rest of our family, teachers, friends. He would throw anything that was in his hand. I remember him once throwing his school bag over a tall bush and into the middle of the road. I remember him squeezing my fingers in his palm until I cried or squeezing my nans arm until he got yelled at by mum. He dug his nails so hard into his own skin that it bled and then he would cry.

At 13, Stephanos broke a window in his home. His injuries were so bad that he needed surgery. The next day, he woke up in pain, disorientated, and with stitches. He ripped them off during his meltdown despite his family’s best and desperate efforts to help. His self-harm started during his puberty. He used a closed fist to hit the side of his face so hard that he caused the retina in his eye to detach. His family lived with his rage and self-harm every day for years, this had become commonplace. He didn’t communicate to say something felt off but one day his mum noticed a whiteness in his eye and took him to the doctor who confirmed that Stephanos is blind in one eye. To help control his outbursts, his family used medication to calm him down but they say they never got to the root of the aggression, which peaked at 16/7 years old. Was it pain? Was it sensory? All they know was that they felt lost.

The families all feel guilt for not doing enough and for any harm the boys inflict on themselves, for every behaviour, every sound or scream. Not only are they judged and stared at for every atypical behaviour, they judge themselves always striving to do and give more. What parent doesn’t feel that? Our parent’s stood up, against all odds, in a society that didn’t even know the word ‘autism’ and created functioning, well-behaved adults who understand, laugh and love. What were you like as a teenager? And if you weren’t taught to refrain yourselves would you know how to?

Sensory sensitivity can be a real struggle. We could lie and say we are used to it after 20 years but it’s still frustrating and I still get annoyed and fight with Christos. The only advice that exists is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. We don’t understand what they see, hear or feel and that is in no way your fault. To everyone else who doesn’t live with autism – sometimes we don’t even hear the screaming because we live in a ball of scream. Other times, we don’t react to the hitting or pulling or scratching or throwing because we live in a world where silence is not the typical. Once the 100th storm of the day has passed, Stephanos’ calming depends on which behaviour has been triggered. He may go lie down by the front door, run to the back of the house, sing a song and stim with his index finger or stay flat down reciting a song. He will shred flowers, grass and weeds through his fingers, at day or night and for hours. He goes back in the house, he smiles and suddenly the slate is wiped. You have the strength to take on another 7 storms. Once the millionth ‘Oh’ has been said, Christos will just repeat our names over and over until we look like we are happy. He will shower us with cuddles and make us apologise for what we did to cause it. He will laugh until we laugh and he will cry if we cry. He will apologise and smile. Suddenly my fingers don’t hurt anymore and his kissy face makes it all ok.

So what happens when we aren’t there? Where will these reactions be housed? Where 11165285_10206036337501718_7756282778690047842_nwill they find forgiveness? How will they be understood? How do you size them up, find what they need and keep them safe? In Cyprus, in our case, the answer is to create something our government doesn’t offer – or can’t offer quickly enough. We work to find ways to fund high quality facilities which are based on ethical and inspiring opportunities for children and young adults with autism in the Famagusta area. To recruit and ensure that their education and development doesn’t stop just because being ‘typical’ means you leave school at 18. The members of the Autism Support Famagusta charity work all day, take care of their family and rack their brains to facilitate activities and growth based on individual interests and skills. Two of the boys going into this home will be Christos and Stephanos will you help?

The stories we don’t tell are the stories where we are all to blame for not making this world a world we can all live, grow and be in. They are stories in which our pursuit for comfortable and easy conversations are depriving young adults their future. They are the stories in which we are the villains for not caring enough because it’s not our ‘problem’. Christos and Stephanos hide from the Disney villains on the TV and they turn the villains around them to warriors. Which one are you? And what will you do this April, for autism awareness month, to make sure everyone has a place in this world? Until every last piece of the puzzle fits?

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21 and Atypical: More than meets the eye

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

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

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

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

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

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

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

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21 and Atypical: Popping to the shops

In 2018 Sainsbury’s launched a new trial to help enhance the shopping experience for customers with hidden disabilities. The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed. The scheme helps those with hidden disabilities, such as autism, dementia, visual or hearing impairment by alerting staff that extra support may be needed while shopping. Lanyards are available to collect for free and are for each customer to keep so they can wear it every time they come into store! Not all Sainsbury’s stores have implemented the initiative yet. Sainsbury’s is the first supermarket to test the initiative, following Gatwick Airport’s successful launch and, by using the same sunflower lanyards as Gatwick and Heathrow Airport, Sainsbury’s sets an example for other retailers to follow.

In Shopping with Autism I described how, before Christos started school and was able to communicate with us better through PECS, going shopping with him was a nightmare. It was like walking into a living breathing nightmare. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised after every trip – and there were a lot of trips. A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to literally drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying, he would organise the shelves. If something in aisle 4 was supposed to be in aisle 12, he knew and he would fix it. Now? It’s one of his favourite errands. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. 9 times out of 10, Christos will jump at the chance to go to the shop; big or small it doesn’t matter! He will pick everything and stand over my mum and shout and order her around until everything is unpacked and stored back home. Now, he has the skills to shop for himself. This growth, this maturity and his development is a testament to my parents’ unwavering will to prepare him for the trial and tribulations of every day life.

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Stephanos is not interested nor does he get involved in the shopping aspect of daily life.  He knows and trusts his family to provide him with food stuffs, he is adaptable in brand names and is happy with to have his small juice, ice cream or chocolate and let everyone else deal with the hassle of a supermarket. He doesn’t go to the shops and will not get involved unless he is asked to by his family. When he is asked, he kindly obliges and goes back to his snacks. Whereas, Christos will make you do it all his way. Stephanos’ shopping routine took roots when he, his dad and brother took him to the supermarket with and got him a juice, a chocolate or an ice cream. This simple action, possible done to distract from a tantrum, triggered a routine which he follows when he does participate in a shopping trip. The brands of juice, chocolate or ice cream are not always the same  but he always picks out the three items mentioned above. But, just like his pal, his early encounters with big markets, the sounds, smells, people, intrusion of private space would trigger him when he was younger. At 12 years old, Stephanos had a huge meltdown in a shop in the UK. His mum remembers it as a huge episode including self-injury and the worst she had had to deal with up until that time. Even though the family don’t usually take him to big markets so as to spare him the angst, when he does join he is much better equipped to deal with a mood, or someone clearing their throat. While he may get a bit upset and start stimming, overall he is happy with his treats. I mean, I order everything online just so I can avoid these places, why should our boys feel any different?

The reason we collate and write about these stories is to give you an insight into autism daily life. It’s not always easy but it’s not always difficult either! These boys have gone from kicking and screaming to young adults who know how to help their parents, how to negotiate and take a step back when it all becomes too overwhelming. Christos and Stephanos’ stories are being told so that next time, when you see a parent desperately trying to get their child off the floor, or a kid making sure all the water bottles are facing the same way you may see a bit more than what’s on the surface. You may see the need to help make this world more autism-friendly and you may remember that milestones are different for all of us. You might remember these stories and realise how this was a millionstone for both of them.

My brother is a controlling shopper and Stephanos would just let him get on with it.  When you see them and spend time with them you always get the impression that the boys have a full understanding of each other and respect each other’s character, boundaries and behaviours.

#21andatypical

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April 2018: 2 Science Headlines

1/ Social pressure

A drug is being tested which claims to help people on the autism spectrum with social skills. Balovaptan, said drug, acts on receptors. Receptors are located on the outside of cells and communicate commands to the inside of the cell. There receptors receive a hormone called vasopressin, which is a hormone from the brain which influences social behavior. Balovaptan is designed to block a receptor of a specific vasopressin, which might be linked to social anxiety says Larry Young, professor of psychiatry at Emory University. Basically, the brain sends vasopressin to cell receptors and some of these hormones affect social behaviour. This drug might be able to prevent the hormones affecting social anxiety. Behavioural “symptoms” of autism can be identified (but not limited to) as trouble in communication and interaction.

The idea of using drugs to change characteristics of people on the autism spectrum to “fit in” to a neurotypical society is worrying. That being said, it is important that such medication is available for the safety of the people that need them and for the mental well-being of the people that make the decision to take them.

We all have some form of social anxiety. Whether its tapping fingers, playing with your hair, flapping arms or other forms of stimming. People on the spectrum are under pressure to behave neurotypically to avoid bullying, rejection, discrimination – referred to as ‘masking’. This may be a solution for some but there’s a better one – it starts with ‘aware’ and ends with ‘ness’.

2/ Genes

Remember the MSSNG project which 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.” (The Biology of Autism)?

Remember the research published by Princeton University and Simons Foundation researchers where they analysed the human genome to try and predict which genes are likely to cause autism? They had linked about 2,500 genes to autism; we have an approximate total of 24,000. (Mr Autastic)

WELL: Researchers have found alterations of the gene thousand and one amino-acid kinase 2, known as TAOK2, which is so much fun to say out loud. The alterations found are thought to play a direct role in neurodevelopmental disorders, including autism.

Karun Singh, study co-author and researcher with McMaster’s Stem Cell and Cancer Research Institute said: “This is exciting because it focuses our research effort on the individual gene, saving us time and money as it will speed up the development of targeted therapeutics to this gene alone.”

img_6972Science is on its way to delivering answers to what causes autism. They are closer to finding out how to predict autism, and, as a result, closer to finding a way to prevent it. In the  meantime, it’s up to you to ask questions, to include to shatter stereotypes and to embrace the people around you.

 

 

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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.

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Shopping with Autism

The thought of writing this post makes me smile. It’s that smile you have when you have overcome something and then you look back on it years later and think “How was that my life?”.

In 2015 I spoke to you about Christos’ traits in “Why fit in? a) Gestures“: [He] likes to shake his arms in the air a lot, quite forcibly and he makes this laughing but not laughing sort of sound. When we are in big open spaces he’ll run like the wind. When we were in supermarkets, when we were in Disneyland, generally in places where he feels comfortable. 

Looking back on that now, it’s quite funny to think that I used supermarkets as an example of a place where he feels comfortable.

Up until the age of 8 (?Mum correct me) going shopping with Chris was a nightmare. I’m not exaggerating. It was like walking into a living breathing nightmare. Most of the time mum and dad wouldn’t take him. But when you’re on your own and you have a 10 year old and a 2 year old, and they need milk, or nappies, or food, you gotta pack up and go to the supermarket. It wasn’t something we could avoid.

Just thinking of driving up to the supermarket makes my palms sweat. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised.

A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying. He would organise the shelves. If something in Isle 4 was supposed to be in Isle 12, he knew and he would fix it.

Now? Now it’s one of his favourite places. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. No crying or screaming involved. This is a testament to my parents. Not the strangers around us who, instead of helping, stared in disbelief, not being able or willing to understand that my brother was not naughty he was just in incomprehensible pain. My parents made this progress possible. Milestones are different to all of us, and this is a millionstone (trademarked).

When I left home in 2008 he was 10 and in the organising phase. My dad worked nights so in the afternoons it was just Chris and mum running errands, going shopping. I remember her calling to tell me they had been ‘banned’ from a supermarket. Chris was sorting out the chocolate shelf (without pay) like he always did, while mum was picking some other stuff up from a bit further down. Chris found an open chocolate bar and he kicked it under the shelf. [LOLLING] I mean, why was there an open chocolate bar there in the first place?? Who’s fault was that?

Anyway, one of the staff found my mum, told her he was disturbing or stealing or that he was part of the chocolate mafia; I don’t know what. So, they asked them to leave. Now, those of you who know my mum can imagine. Those of you who don’t, let me just tell you that she’s not like me. She’s shy, polite, kind and was shocked. In her state, she was unable to express herself and instead just stopped going to that supermarket.

My rationale was to call the supermarket, from the UK. I was quickly convinced not to. Instead, I told everyone who would listen that this had happened in that one supermarket in my home town. My sister (who broke the World Guinness record for the 4th time, as mentioned in previous post #justsaying) was outraged. I remember us driving past the supermarket and always remembering, bringing it up.

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I was so resentful of that brand, that when I moved to Brussels and it was the neighbourhood supermarket, I hated myself for sometimes forgetting to make a list and going somewhere else and instead having to buy milk from there. That’s right, I can hold a grudge. The original supermarket recently closed down, and I would be lying if I didn’t feel a tinge of happiness that that place, where my mum was made to feel inadequate and my brother was singled out for being himself, was no longer there.

In recent years, many big supermarket brands have introduced measures to help their autistic buyers. For example, The Asda “Quiet Hour”, earlier this year Tesco trialled a ‘quiet hour, Marks & Spencer has launched a uniform range to help children with Autism etc. This year the National Autistic Society (NAS) has launched the “Autism Hour” to help draw attention to the difficulties that people with autism can face in noisy environments.  If you want a glimpse into what its like, watch this video.

In the first week of October, businesses will turn down music, reduce announcements and dim lights to help create a calming and less daunting environment. A number of major retailers have already signed up to the initiative, including Clarks and Toys R Us and we hope to see many, many more name brands on the list.

I hope this is a success. I can’t help the voice in my head screaming that this is making autism the exception instead of teaching acceptance. However, the other voice in my head (i know how this sounds) is reminding me that all the people involved in this initiative will go home and talk about it with their family, their kids, their friends. I am reminded that this is awareness at it’s best because it helps you understand and take away only the best. I hope that this paves the road to us shopping together, with more understanding than judgement, more humanity than dread and with more knowledge than ignorance.