Movie Time, Autism Style.

A trip to the cinema can be (depending on the film!) a great experience. I don’t go that often, as I have quite a narrow range if interests when it comes to film genres, but when I do go, I love the huge screen, the fantastic sound, the sense of being their alone when the lights go down. But to a parent or carer of an autistic child, that experience can be a fraught one.

To a child with an autistic spectrum disorder, that experience is wholly different. While a child may love the subject matter (eldest can quite happily watch the same film 3 or 4 times in a row without being bored), the experience can be confusing and even frightening. Sensory issues are central to ASD children, and the cinema provides an overload of sensory stimulation. Autistic children will be hit with a welter if images, noise, and people. When we go to the cinema, there’s no choice of who we sit next to, that defaults to the person who happened to buy that ticket. This is stage 1 of taking an ASD child to the cinema. Matthew in particular is highly distrustful of people he doesn’t know. It takes a long time for anyone to gain his trust and get close to him. I’d go as far to say he’s frightened of strangers. In one way, I’m happy with that, but it makes life difficult in “normal” social circumstances. It can take a while for Matthew to be comfortable sitting next to a stranger to the point where its simple to shift around to make sure he’s between Jane & I. Even if he’s at the end of a row, he’ll end up on the stairs, crouched down to make sure no one can see him. In his mind, if he can’t be seen, and can’t see others, he’s alone and safe.

Next up is the visual stimulation. Even a 42” TV in a small lounge at home won’t prepare them for an enormous cinema screen. When the pre-film trailers and ads start running, the cinema goer is suddenly hit with a visual maelstrom. But, fortunately, our brains are programmed in such a way to cope with almost overwhelming visual stimulation. To as ASD child, it can be incredibly confusing to be bombarded to the point where the can’t comprehend what they are seeing. It’s something you just can prepare them for. The glaring brightness of the screen is exacerbated by the house lights being turned down, making it not just an unfamiliar setting, but one in which the child can’t see where we are. For boys that high anxiety levels are part of their ASDs, the end result is a frightening one.

And that’s not the end of the sensory onslaught. A cinema is a big place, and the sound needs to be at such a level to ensure we can all hear it. And of course, the surround sound isn’t just there for us to catch the dialogue, its an “experience.” For Daniel, its more than that. The neurotypicals amongst us are able to filter out sounds we aren’t interested in to make sense of what we are hearing. Can you imagine not being able to do so? Imagine all the sounds you can hear bombarding you without being able to make sense of any of it? That’s Daniel. Auditory stimulation can be difficult for him to handle. When there’s a lot of noise in any situation, you’ll often find him with his hands to his ears to shut it all out. Matthew is little different – he can find the noise of “happy birthday” being sung at a kids party overwhelming.

Its difficult to prepare them for all of this, and the sensory overload can make a trip to the cinema very hard. Matthew will be on the floor, or sitting on the steps, Daniel will be up and down, overwhelmed by sensory overload. To many, it will look like two poorly behaved boys. Its part of the ignorance that parents and carers of ASD children face on a daily basis. Its far easier to judge than think there may be more to a situation than meets the eye. We’ve though on ways to help the boys, and now finish off the school week by having a movie night. It’s a great way of unwinding for us all. One of us has the honour of picking the movie of the week. Snacks are prepared, drinks are readied. The boys have the option to control the level of lighting and sound they want. It helps them learn how to deal with an experience like going to the cinema, by slowly introducing the sensations involved.

The real thing, as I’ve said, is still completely different. Its great that cinemas have now started doing autism friendly screenings where the house lights will be left on, and the sound isn’t so overpowering. Unfortunately, cinemas are charging full price for the privilege. When we take the boys to the cinema, we take them on a Sunday morning to the kids club at Cineworld. Its £1 a head, so great value. It also means that if the boys find it too hard to cope, or aren’t enjoying the film, there’s the option of leaving for the sake of losing just £4. But paying upwards of £20 for an afternoon at the cinema when there’s no guarantee it’ll be a positive experience is a bit of a luxury in times such as these.

It’s a positive step that cinemas are taking, and its fantastic that they are aware of the difficulties facing parents & carers of ASD children. They are listening, and that has to be commended. But on the pricing, there is still someway to go, but at least its going in the right direction. When we get there, as Matthew says, it will be Lights! Camera! Action!

The World of Neil

I love radio dramas. They let you lie back, and let your imagination go free. When its well written, there can be few media experiences that can beat it for pure relaxation. About 20 years ago, I thought I’d give the Archers a go. I listened to a couple of episodes, but the timing of it meant I couldn’t listen regularly, I gave up. But in October 2007, while looking for the podcast of a Radio Four programme I’d wanted to listen to, but missed, I spotted the podcast for the Archers – thanks to the BBC for http://www.bbc.co.uk/podcasts/series/archers! Even better, I could subscribe to it through iTunes. One click later, and I would have radio heaven sent (almost) directly to my iPod.

With any new radio, or TV drama, it can take a while to get to know the characters – their names, who they relate to, what they…

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Can We Communicate?

When we feel nervous, anxious or even scared, most of us are able to clearly demonstrate how we feel in ways that are understood by others. Our communication skills are good enough to let others know how we feel. Its a skill we take for granted as we use it daily to get what we want, and to ask for help, or to help others. It may not occur to us that others are unable to communicate in the same way as us, and it can be frustrating for both parties.

Communication difficulties are commonplace for children with an autistic spectrum disorder. For some, verbal communication is impossible. Even for those who can communicate verbally, they can find it hard to let other know how they feel. Communication comes in non-verbal forms that can leave the recipient of the communication often confused and unable to understand what the child needs to tell us. Its more frustrating for the child who knows perfectly well what they are trying to tell us. Daniel (our youngest) has Asperger’s Syndrome, and although in general his speech is good, he is increasingly resorting to non-verbal communication. The non-verbals will be a mix of pointing, made up words and grunts. When he’s told we can’t understand, the non-verbals just become more assertive and deliberate, and you can see his frustration building. It is generally the signal that a meltdown will soon start, which creates a new set of problems. In the meantime, whatever he was trying to communicate has been lost. It may have been something so simple that it might have needed a one word answer, but will lead to a hour-long meltdown.

Matthew has similar difficulties, but even more difficult for him is expressing his feelings. Over the years since his diagnosis with an ASD, we have learned how to interpret some of his responses to certain situations. Matthew finds it hard to deal with his peers, and cope with any social situation. When confronted by other children in the playground, he can’t judge how they are feeling, and that their aggression may be over-excitement. Equally, when it isn’t just over-excitement, and is deliberate bullying, he has no idea how to cope. When this happens, he will start coughing at home. We’ve learned that its a nervous cough, and that there is a problem. Matthew also knows that cough enough, and he will be sick. He’s clever enough to know that being sick will mean 2 days off school, thanks to the school’s 48-hour rule – if a child is sick, they can’t come back to school for 48 hours for fear of infecting others. We know that Matthew being sick is a result of his nervous cough, and not because of a bug, but he’s been sick, and that’s no school.

This happened yesterday. While Matthew was waiting to get into the school’s Lego Club after his lunch, he was kicked by an older boy (not spotted by any supervising adult, although 2 classmates reported the incident.) Minutes later, an older brother of one of Daniel’s friends reported to the Depute Head that Matthew was being sick in the toilets. To us, it is no coincidence that he was sick minutes after a bullying incident. Matthew has been the victim of school bullies off and on this session, with little comeback. His communication problems and failure to cope with social situations means that he is very vulnerable, and the bullies know exactly how to work a situation that Matthew will flare up in, which invariably leads to Matthew being caught, because he’s not aware enough to hold back, or to manoeuvre through the incident safely. The bullies will sit back, and Matthew will look like the aggressor. I think he feels that he gets no support from the school, as he can’t deal with immediate confrontations so won’t tell the teacher what has happened. If its not seen, and Matthew can’t tell what has happened, then he looks bad. I suspect being sick is a defence mechanism that indicates he’s scared and needs protection he doesn’t feel he will get. He knows as soon as he’s sick then he will be safe at home. We’ve told him to tell an adult if he feels vulnerable, but we know he won’t. I’m not sure the school realises how vulnerable he is, as he receives little in the way of direct supervision in the playground. It was one of the first concern the Psychologist who diagnosed him had. Three years on, I think he has no confidence that he will be safe at school, so has found a way to make his feelings clear, and to protect himself.

Matthew is off school today because of being sick yesterday. But a child who is ill will have little energy, and will be content to sleep, lounge or otherwise be lazy. But Matthew is full of life today, showing no signs of any illness. He’s managed to get off school, is safe at home, so life can go on as normal. He is due back at school tomorrow, and we’ll see how nervous he is about that when he starts coughing tonight. Its a skill the parent of an ASD child has to develop. Reading the non-verbal signs from an ASD child can often be the only way to get to their feelings. We get plenty of practice, and suspect our skills will receive plenty of training in the months and years ahead.

Dum-di-dum-di-dum-di-dum

I love radio dramas. They let you lie back, and let your imagination go free. When its well written, there can be few media experiences that can beat it for pure relaxation. About 20 years ago, I thought I’d give the Archers a go. I listened to a couple of episodes, but the timing of it meant I couldn’t listen regularly, I gave up. But in October 2007, while looking for the podcast of a Radio Four programme I’d wanted to listen to, but missed, I spotted the podcast for the Archers – thanks to the BBC for http://www.bbc.co.uk/podcasts/series/archers! Even better, I could subscribe to it through iTunes. One click later, and I would have radio heaven sent (almost) directly to my iPod.

With any new radio, or TV drama, it can take a while to get to know the characters – their names, who they relate to, what they get up to. With each episode of the Archers only being 12 minutes long, characters can be out of it for weeks while others are part of ongoing storylines. But after a while, I became familiar with the characters. The Archers is part of British popular culture, despite it being ridiculed by some. In excess of 5m people listen to it daily, which is a number a lot of TV producers would love to see for their shows. Although its origin was to educate the public in the ways of farming following the War, it has blossomed into a compulsive daily listen for millions.

The Archers is a showcase for rural Britain. It still provides listeners will a view of what daily life is like for farmers. It also can give the listener an idyllic image of rural England, and can be a lovely daily escape from the ongoing grind of our lives. I wonder how many listeners would love to go for a Sunday pint in he Bull? Although times have changed in Ambridge – they too are in the 21st century – a lot of things stay the same. Controversy is kept to a minimum even though there are occasionally some tough story lines. Weddings, deaths, births, affairs – the staple of most soaps – are all present in the Archers, but they’re handled fairly gently.

The Archers hit 60 last year, with an extended episode to kick off the new year. Anticipation was raised to fever pitch amongst regular listeners, with writers promising events that would “shake Ambridge to the core” – we were put out of our misery when local toff, and long term character, Nigel Pargetter fell from the roof of his stately home to a grisly death! But such typical soap land sensationalism isn’t really part of the Archers core. Listeners love the gentle calmness of the show. A change of producer in 2012 caused some concern, with an ex-Eastenders producer taking the reins. There were fears that the Archers would become just another typical soap, with lurid story lines becoming the norm. Fears that have proved to be overstated. We’re getting the human interest story lines – Lillian’s affair with her partner’s half brother being Eastender-esque – but tales of badgers, Llamas with TB, and Tom Archer’s sausages have reassured us that life goes on as normal!

Its now over 5 years since I started listenijng to the Archers, and its become a real guilty pleasure on the bus to work in the morning. Its gone and given rise to twice-weekly spin off series, Ambridge Extra, which gives some deeper insight to some of the Archers’ story lines, although the two programmes are generally independent of each other. The 6 episodes of 12 minutes each every week are a real gem of British broadcasting, a real part of our culture. To the uninitiated, look past the traditional staid image of Radio 4 and join the 5 million of us who love the dum-di-dum-di-dum theme tune that heralds our latest trip to Ambridge.