Jan 052015
 

School holidays are always difficult when you throw autism into the mix. The change of normal routine can be a big issue. Add Christmas to that anxiousness, the extra attention from friends and family, the noises, the colours, the smells… well, I’m sure you can guess, it gets a little difficult at times! Not just for Mini-MaFt though, the anxiousness rubs off onto siblings and affects Mini-Mrs-MaFt too.

Quite simply, while we’ve had a nice Christmas, we’ve also had a fairly chaotic one…

Today Stupid-Dad (that’s me) picked up Mini-MaFt to go to his Monday night club only to find that it doesn’t start up again until next week… Cue meltdown :/ Shouting, screaming, kicking the back of my seat – the plan had been changed without any sort of warning. Suddenly, he went quiet and then after a short time (16 seconds to be precise) I heard a little voice saying “…17…18…19…20”. Just after this Mini-MaFt said really calmly:
“Dad, you know how [autistic friend] has to walk in circles around things to calm herself down or why-ever it is she does it?”
“Yes Mini-MaFt” (sometimes I use his proper name in real life…)
“Well, I count to 20 now when I get angry.”
“That’s good Mini-MaFt, and does it help?”
“Yes. I don’t always count to 20 though, I just count to my favourite number. Which is 20.”

How good is that? Such a simple coping mechanism that clearly worked. He thought of it himself too. In the car. I’ve tried getting him to breath deeply before now and that never helped. Sometimes the best thing is to let them discover their own coping mechanisms and support them in the process.

So, well done Mini-MaFt, next time Stupid-Dad lives up to his name, remember how you cope with it!

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Aug 012014
 

A diagnosis of autism is just that. A diagnosis. It shouldn’t need questioning by laymen. A professional has done that already over the course of 12-18 months. The parents have, more than likely, also struggled for many years before that too.

The small parts that others see of my wonderful little man are, literally, just small parts of his life, tiny snapshots, fleeting glances. They may not see anything wrong with him but that doesn’t change the facts. If they saw a physically disabled person sat normally on a couch would they question their disability or the diagnosis because, for that brief moment, their disability doesn’t affect them? And, for all intents and purposes, they ‘look normal’? I doubt it.

But follow this (imaginary) physically disabled person around for a week, or even just a day, and you’ll see the difficulties they face: getting dressed, steps into shops, aisles not wide enough for wheelchairs, toileting, getting into bed… the list could go on and on. But sometimes things look ‘normal’ and their disability doesn’t effect them. Now, follow Mini-MaFt around for a day and you will see just as many difficulties: over-sensitivity (noise in shops etc, taste and texture of food, unexpected smells, the feel of clothing), under-sensitivity (shoes need to be tightened throughout the day, bedding needs to be pulled tight even in red hot temperatures), rigidity of thought (you can’t just change the plans for the day), routine, impulsive behaviour, lack of self-awareness/danger, ‘stimming‘, taking things very literally (“you have to tell your parents to buy you one of these!” – that is now a rule that must be obeyed)… again, the list could go on and on. However, the point is that all these things cause daily difficulties for Mini-MaFt but we’re all getting better at handling situations so that things don’t become a major issue… some of the time.

People will generally bend over backwards to help a child that is in a wheelchair, or to give them a sympathetic smile if they look upset about something. “Oh, that poor child is upset, they must find life really hard with a wheelchair”. It sounds awful, and I know I’m not alone in saying this either (I’ve heard it and read it in numerous places) but sometimes I think it’d be easier if Mini-MaFt was in a wheelchair. Why? Well, I’d rather my child was given caring / sympathetic words and looks when The Big Wide World becomes too much for them than to get snidey comments about bad parenting or spoilt children just because they “look normal” so they “shouldn’t behave like that”.

Even after diagnosis there are lots of parents who hear phrases like “well, he looks normal”, “she’s been fine this evening, I don’t know what you’re so strung up about”, “can’t you control your child?”, “oh, my son does that too”, “are you sure you’re not just making them worse by giving in to them?” and “he’ll grow out of it”. It honestly breaks my heart to hear things like that and it’s hard not to just snap and go off on one. But the fact is, I know that the responses and questions generally tend to stem from a lack of understanding of ASC’s (Autistic Spectrum Conditions) and not from simple rudeness.

However, if there has been a professional diagnosis then please, please don’t question that by hinting that they might just be imagining everything. In fact, even without a diagnosis don’t do it either. None of us are capable of knowing what other people are truly feeling; I know from experience that it’s all too easy to put on your mask and pretend that all is well with the world. As the song in ‘Tangled’ says: “Parent knows best” (OK, so the actual lyric is “Mother knows best” but I needed to change it to make my point). The parents of a child with autism have already spent many years with them, they are with them on a daily basis across all manner of events, experiences and locations – they know their child and how their autism affects them.

Wheelchair users have slopes into buildings because steps would cause problems – this allows them to be ‘normal’ and go places that able-bodied people can go. Autistic people will have routines and techniques in place so that potential problems are bypassed with little struggle before they can become a big issue. Again, this helps them to be ‘normal’. After the years of struggles (both emotional and physical) the last thing they need is to be told that their child ‘looks normal’ because I can guarantee that this ‘normality’ has taken a lot of effort and learning both for the autistic child and their parents/carers.

To use the wheelchair analogy one final time, if you see a wheelchair user inside a shop coping perfectly with choosing some new clothes then would you question their disability because they can obviously manage to be ‘normal’ and do ‘normal’ things like shopping? No, of course not – you’d see that they’re in a chair with wheels to help them move, you’d see that they had a slope to help them get in the shop, you’d notice wider aisles around the racks of clothes, you’d notice lifts between floors and you’d realise that all the little extras are what helps this person live as ‘normal’ a life as possible. It’s the same with autism, although the problems and the solutions(?) are invisible – you can’t see autism and, in general, you won’t see all the work and effort that goes in to caring for an autistic child: the social stories, the advanced planning, the self-control, the learned social behaviours etc. So when you see an autistic child ‘looking normal’ then please remember that, just like with the slopes and lifts, they’re able to look ‘normal’ because of all the extra things that are in place to help them – and not simply because their diagnosis is wrong.

I’m concious that this has ended up quite long and, so, in a nutshell… Autism or not, just remember this:

battles

 

For more information on autism and Asperger’s please see the many amazing resources that the National Autistic Society produce.

 

Post Scriptum: This video got shared with me in between writing this post and publishing it. I thought I’d add it as it’s a good reminder that those who pass judgement are, in fact, the minority.

 Posted by at 2:30 pm
Feb 052014
 

Mini-MaFt, like me, loves watching films; and he, like me, loves going to the cinema. The social ‘norms’ of the cinema, however, don’t really fit with his autism. Things we take for granted like sitting still, not talking, not telling the whole auditorium what just happened (three times a minute… for 10 minutes) are generally frowned upon during cinematic outings. This certainly doesn’t stop us from going to the cinema, we just have different methods to most people. Most people rush to the cinema as soon as a big film is out – we leave it a week or two. Most people like to have an ‘evening out’ at the cinema – we go to the earliest showing.

These methods have a few benefits:

  1. Cinema tickets are cheaper during the day – the prices increase around 6pm
  2. You generally don’t need to queue (even less so if you order online – Tip: Cineworld tickets are 10% cheaper online and have no booking fee)
  3. A week after it’s release a film isn’t as busy – you can pick the best seats without paying extra
  4. Less busy times means much less ambient noise and less physical bodies in the foyer etc
  5. With an average of 10-20 people watching a film it’s easy to pick a seat away from the ‘crowd’ so any questions and/or discussions don’t interfere with other cinema goers

It works for us, and it’s great.

Many cinema chains have what they call “Autism-Friendly Screenings” of certain films. I’ve looked into these and I’m not convinced they would work well for us. I also think they’ve got a few things wrong. The Dimensions UK website (who organise the screenings) state the following items that make a screening more autism-friendly:

  • The lights will be on low
  • The volume will be turned down
  • There will be no trailers at the beginning of the film
  • You’ll be able to take your own food and drinks
  • You’ll be able to move around the cinema if you like

 

The lights will be on low

Once when we were at the cinema there were a couple of technical glitches. The main one for me and many of the other people who were turning round looking at each other, was that the 3D hadn’t been ‘turned on’ – we were getting the duplicated image on the screen but the glasses had no effect. The other glitch, and one that no one else seemed to notice, was that the house lights were still on, albeit only slightly. This set Mini-MaFt off: “Why are the lights on? It’s too bright. It’s going to spoil the film. The lights are meant to be off in the cinema. It needs to be dark.” I don’t think anyone else noticed that the house lights were still on – but it stopped Mini-MaFt being able to relax and enjoy the film. They did sort out the 3D and lights before the film itself started though. So for us, if the lights are on (even on low) then the autism-friendly screening wouldn’t be that friendly – “they’re supposed to be off, everyone knows that!”

 

The volume will be turned down

“People with autism don’t like noise”. That’s actually not true; it’s missing one word: “some” as in “some people with autism don’t like noise”. If you want a broad statement about noise and people with autism then use this, more accurate, one: “People with autism often have different sensitivities to different stimuli”. Some are over-sensitive, some are under-sensitive and some, admittedly rarer, are both over-sensitive as well as under-sensitive at different times. A low volume will be great for someone who is over-sensitive to sound. But what about those who are under-sensitive to sound? Basically, they won’t hear the film. Mini-MaFt’s situation is a difficult one to pin down – at times it seems he is under-sensitive (things need to be loud) but then at times the slightest noise sets him off (as though he is over-sensitive). There are other factors too, such as what else is going on. At times it seems like the TV is loud because it helps him to concentrate on his one task – watching TV. Most people are able to filter out background noise but this is something people with autism often struggle with. So a cinema where the volume is lower will also affect Mini-MaFt in a similar way – if there are any other noises (people talking, whispering, sweets rustling, someone breathing) then this will make it difficult for him to concentrate on the film itself. Mini-MaFt has a thirst for knowledge; he loves to ask questions about everything – especially new things. If he’s watching a film he hasn’t seen before then he will ask questions and want things clarifying. He will also tell me numerous times what happened. With the low volume this is more likely to affect other cinema goers. So for us, if the volume is low, then the autism-friendly screening wouldn’t be that friendly.

 

There will be no trailers at the beginning of the film

I can sort of understand the reason behind this – many people with autism struggle with the concept of time, and if something is seen then they often need the instant gratification of receiving it. So if someone with autism sees a trailer then that may play on their mind and cause problems as they would want it there and then. Showing trailers could also interrupt a routine: “We’re going to the cinema to see XYZ”, “So why is it showing ABC on the screen then?”. My main gripe with this decision is that, well, it makes it boring. It also removes an opportunity to plan ahead. If Mini-MaFt sees a trailer for a film and likes the look of it he will ask if we can see it – I learnt a long time ago not to make promises I could not, 100% guarantee, that I could keep – so my usual response is “we’ll see”. When we do get around to seeing it he already has a good idea of what will happen in the film (most trailers these days tell you the whole story anyway!) which limits his anxiousness and can sometimes reduce the number of questions asked during the film. It also works as a good ‘social story‘ to help plan both in advance and to discuss afterwards about ‘how the cinema event works’. So for us, if there are no trailers, then the autism-friendly screening wouldn’t be that friendly (and also removes a great opportunity for parents and carers to teach some new social skills).

 

You’ll be able to take your own food and drinks

Well, we do this anyway and have never been apprehended, chased, expelled or banned… But it’s nice to have permission! Having said that, part of our job as parents and carers bringing up a child with autism is to help our children understand the world as it is. It’s like school sports days where “everyone’s a winner just for taking part” – that isn’t how life works; nor is being able to take everything you want, everywhere you go at all times. Why not use the cinema’s rules on food and drink as a social story to teach children about how different places have different rules and that we need to follow them, even if we don’t agree with them? Let them have the opportunity to practice choosing some sweets – in general the range of goodies is far less than in a local corner shop so the choice will not be as overwhelming. But if you need to, break it down for them into a choice of two or three items. It’ll be a good experience, you can discuss it afterwards about how if someone takes a long time to choose then this gets other people upset because they want their turn – again, social stories using situations they are more likely to be able to relate to. And, if all else fails, you have a bag of Haribo Starmix in your coat pocket anyway.

 

You’ll be able to move around the cinema if you like

On a recent cinema trip there were two families sat together, the parents were chattering away and the kids were running up and down the aisles and along the front of the screen. This was while the film was on. I was reluctant to say anything because I know what it’s like to be on the receiving end of questions like “can’t you control your child?”. Mini-MaFt wasn’t so calm about the situation though and the children moving about was very off-putting for him – it was a distraction to him. He also got quite upset that they weren’t sitting down; “you’re not supposed to run around at the cinema” – the rules were being broken and, my word, did he need to make it known! So this feature, being allowed to move around during the film, has two flaws; the first that is will likely be a distraction to other autistic people who may already be struggling to concentrate on the film itself and, secondly, it teaches children that they can run around at the cinema. Remember the sports day from earlier? It’s that all over again – to stand a chance of surviving into adulthood we need to help our children understand the world. Most people will have a natural understanding of cinemas when they first visit; they will see other users sitting down and pick up on those social cues and follow them. Those with autism generally don’t pick up on those cues and need to be taught things that others take for granted. I’m not quite sure how this feature helps to promote an understanding of how the world works. So for us, if people are allowed to walk around, then the autism-friendly screening wouldn’t be that friendly.

 

Following on from these features, the autism-friendly screenings are usually once a month, with a film chosen by the cinema. What will happen if the child (or sibling) wants to see a different film, one that is not shown in the autism-friendly scheme? What practice have they had for going to the cinema on a normal showing? Have you ‘practised’ going to the cinema at other times? Have you discussed what will be different from the other cinema trips? Because if you haven’t then it won’t be an easy experience – and chances are you’ll just stick to the autism-friendly screenings. And I’ve already asked if that really helps people in the grand scheme of things…

I don’t want to seem overly critical of what Dimension UK and the cinema chains are doing – far from it, I think it is great that the needs of autistic people are being discussed. However, I think there is great scope for improvement – such as recognising that under-sensitivity exists as well as over-sensitivity. A large part of what I am saying also relates to parents and carers. I know how hard daily life is with an autistic child and I know how often we all want things to be much easier and to just be able to go out and ‘be normal’ without all the extra planning and emotion that goes into daily activities. It’s nice to have autism-friendly screenings like this (if they suit your child’s needs) but it’s also paramount (pun intended) to remember our ‘job’ is to help our children to grow up with a sound understanding of the world around them. Bringing them up in the autism-cinema-ghetto may make things easy in the here-and-now but what are the long term effects? What if a friend invites them to the cinema for a birthday treat? Do you want to have to say ‘no’ to the invitation? I know that I would rather be able to say ‘yes’ because I know that Mini-MaFt is well-versed in cinema-etiquette, even if he still struggles at times. Last year Mini-MaFt got invited to his friends birthday party at the cinema – we said yes, and he survived. And I honestly believe a lot of that was because he had had ‘normal’ cinema experiences and learnt a lot of social skills from it.

So if they work for you then great but, from experience, I’d highly recommend going to ‘normal’ cinema screenings and using the opportunity to develop a load of life-skills. Perhaps my tips in the opening paragraph will help ‘break you in’?