The Avalanche

It's about seven o'clock in the evening, and we're just finishing a meal in a local restaurant - not a posh restaurant, just a generic chain food place attached to a generic chain motel. To be honest, that works in our favour. Nothing is very clean, nothing is very fancy, no one is very quiet. We jumble together at some tables in a far corner, all ten of us; our little family of five, my dad, my cousin and his family. And George has been very good all day, despite the sudden influx of new people in the house and then the strangeness of going out for a meal.

(Source: Wikimedia Commons.)

But there's a limit. There's always a limit. It starts with the boys getting little plastic projector toys from a vending machine. George decides he doesn't like his and wants a different one. He's lying on the floor in front of the machine, pushing his fingers into the holes, occasionally trying to rock it. This is probably where we should have left, but of course you don't want to leave before the meltdown. I haven't seen my cousin and family in four years. We only have this one day.

Meltdowns can be like an avalanche. You see a little snow tumbling, but you don't want to leave the slopes. You want to stay just a bit longer. You convince yourself it's safe. And then suddenly you have twenty tons of snow hurtling down the mountain. It hits. It envelopes you. There's nothing you can do but try to manage the situation.

By this point George was trying to cling onto the vending machine and screaming that he didn't want to leave. I tried to hoist him up. He's eight. He's heavy. He's preternaturally strong. I try to lift him and he either goes limp or starts kicking. People are starting to look at the screaming child. I want to stay I want to stay I want to stay I want to stay. I stay very calm. I tell him very firmly that he's not having another toy. I tell him we are leaving. I tell him he can walk or be carried. In the end he's half carried, half dragged. He tries to bite me. He tries to kick me. He tries to scratch me. I keep saying firmly, no. I have to get him through fifty metres of restaurant lined with tables, and the more people look, the more people speak, the worse it is.

I have to stop every ten metres to rest, because he is heavy, and he's fighting all the way. What are people thinking? Are they seeing a spoilt brat? Are they seeing bad parenting? I wish I had some kind of badge on my back, a universal autism sign. All I can do is be very calm and firm and try to get him out of there. I hope that in doing that not only will it help George but it will also indicate to onlookers that we're not dealing with a temperamental little brat. But I know that his screams are resonating through the entire restaurant. I know that while everyone else is just trying to eat or work, I am bringing a tornado through the place.

Finally I get him outside. I need to get him to the car, but he only has one shoe by this point, no coat, and it's raining. I'm exhausted and overwhelmed and my back hurts from dragging him through the restaurant. My husband brings the car, but of course it takes time. I briefly think how useful it would be to have a blue badge in moments like this. All the while I have a screaming, panicking, furious eight year old in my arms, and all I want to do is protect him from the world, from himself, from the stares of other people. It takes multiple goes to get him into the car, then to get his seatbelt on. I have to sit next to him to stop him taking it off. I have to stop him kicking the back of the driver's seat.

And then the sun. It's not like a sudden sunny day, but more like when the clouds start to clear after a huge downpour. It takes fifteen minutes of driving, but he starts to calm down, to stop screaming and crying. I mention how I feel like I've left something behind because I let my husband get my coat and bag. He says he left something behind that starts with 'h' and ends with 'ss.' 'Happiness.' To be honest, I'm proud of him for calming down enough to start to articulate how he feels. And I'm not stupid enough to think it's the plastic toy that did it. The avalanche had been building from the moment strangers stepped into the house, gathering momentum as we went out to a noisy, overstimulating restaurant. The murmurs had been there even before that, through his stress with school and every other tiny daily prick that builds to create a huge sore. He had been holding it together so well all day, and finally something gave. So if anyone in that restaurant saw a spoilt child screaming because he couldn't have another toy, I hope they can understand where the avalanche came from. The toy was the final snowflake that caused the slide.

Autism, School, Empathy, and Brotherly Love

A 'floppy' time during a stressful appointment.

It was a long day for George, who’s now eight. It was his first day back in school after Christmas, and he’s adapting so badly to juniors that he only engages about 50% of the time in his lessons. Most mornings we have to physically dress him – I mean literally, put every item of clothing on him from underwear to shoes. Often he has to be carried downstairs and to the car to leave for school. Sometimes instead of being limp he’s active, and tries to hide in various places around the house to stop us making him go to school. On those kind of mornings we can be kicked, bitten, scratched, and have to man-handle him, fighting, the whole way.

This morning, though, was a floppy morning. He wouldn’t even engage with his pet rabbit. I dressed him like a doll, brushed his hair, and carried him downstairs. He didn’t have breakfast. He did walk to the car, but had to be man-handled into school.

That KFC meal, with all the spicy coating stripped off the chicken

.

We had a call later to say that he’d lain down on the floor in the reception area, and gone to sleep. He lay there un-reactive to anything – bells, feet tramping around him – until later he pulled himself onto the soft chairs and fell asleep there. In the afternoon he did engage more, but this isn’t the way school should be for anyone. The place is rife with stress for him. No one knows what to do to make it better, but it might come to sending him to a special school. (The problem with that, as always, is money and places.)

So as a treat after their first day back we took the kids to McDonald’s. It was George’s secret, and he was bursting with it. Of course it was too simple to go well straight off. When we got there Ben, now five, started sobbing because he wanted to go to KFC, just across the road. We explained that this was perfectly possible – he and Oscar and I could go to KFC while George and his dad went to McDonald’s. It was all fine. But Ben was still sobbing, because although he wanted to go to KFC he wanted the toy from the McDonald’s Happy Meal. He was distraught, melting down, as he does so often after school.

And then George said in a moment of beatific generosity, ‘Don’t worry. You can go to KFC and you can have the toy from my Happy Meal.’

Two in KFC, one in McDonald's across the way.

George loves his Happy Meal toys. They all do. For him to offer his sobbing five year old brother his toy is a huge act. He understood exactly why Ben was upset and wanted to fix it, and the only way to fix it was by giving up his own toy.

All of the difficulties of the day, all of the stress of thinking about him going to a 'special' school, of him having such a hard time, of trying to work out how the hell to deal with this thing, were momentarily erased in those few words.

Now tell me that people with autism don’t have empathy.

So You Need to Talk to an Autistic Kid?

Of course there are loads of professional situations when people need to interact with autistic children. Teacher, shop assistant, medical professional, police officer - the list is endless, because autistic people are just people, and they live in the world like everyone else. The most common situation where we encounter trouble with George is at children's parties, where everyone is expected to participate, to have fun, to join in, and also to communicate their wishes. It's in exactly this kind of pressurising environment that George closes in on himself, and can't talk. So today, as I sat in the clamour of a children's party, I wrote a little list that might help professionals when they need to talk to autistic kids, or any kid or adult who has trouble with the pressure of communication. I use 'he' throughout because I was thinking of George, but of course it applies equally to all genders.

• Even if he doesn't respond, it's very likely he's listening to every word you say (unless he's distracted.) He's hyper-alert in this kind of situation, and he's trying very hard.

• Try to have the conversation in a quiet space, away from distractions. If there's a lot of noise or other sensory stimulation he'll find it hard to hear what you're saying. That said, don't try to force him to move if he doesn't want to.

• If he doesn't seem to want to interact with you, ask if it's okay to talk through his parent/caregiver. He wants to get through the conversation. He just can't.

• Pressure makes things worse. He needs time to make decisions.

• Talking more loudly won't make him respond. Please try to make your voice softer and quieter. Remember he's autistic, not stupid.

• He might want to hide his face, look down, huddle up, or hide in a small space. This makes him feel safe. It's not a problem, and he can still hear you.

• He might not want to make eye contact. Please don't force him to.

• He's not being rude. He knows how to say please and thank you. He knows it's expected, and he's very aware of his own sense of gratitude. But he can't speak.

• If needs be just leave it. Consider if the interaction is really important. Can you speak to his parent or caregiver instead, perhaps at another time? But try not to leave him out just because he can't interact. He wants desperately to be part of things. It's just overwhelming.

I hope that some of these tips help. They won't fit every kid, I'm sure. I wrote them specifically with George in mind. But I hope they help.

This Is (One Side Of) Autism

I don't know how to encapsulate the challenges of autism for someone who doesn't understand. There are wonderful things. George is a beautiful, bright, highly intelligent child. But life overwhelms him.

Please be Patient.

We've just been through the worst meltdown I think George has ever had. He veered between screaming and sobbing. I had to take him out of his grandparents' house. He's bitten me, kicked me, hit me. His strength is phenomenal. At times he literally sounded like an animal, howling, screaming, and moaning. It's not that he won't speak, it's that he can't.

He was terrified, absolutely terrified. It lasted for an hour or more. There was nothing I could do for him. Hugging didn't comfort him, but I had to hold him. Before this he was hiding in corners, behind doors, curled up like an animal. When he felt rage there was a danger he was going to break something. The frustration of not being able to speak was awful for him, and for us. I took him outside onto a hill of wild flowers, and held him to keep him safe, and try to minimise his hurting me.

And then he reached a point where I could let him go, when I judged he wasn't going to hurt anything, when he asked me to let him go instead of screaming at me. He was still slipping in and out of being non-verbal. In the end he went upstairs and slowly he came out of it. And then it's like the sun coming out after a thunderstorm. He's talking, smiling, laughing. He's a different child.

He has been filled up with tests at school, and with social activity. Something had to blow, and once school was over, it blew. It's not about being a spoilt child. It's not about being a bad parent. It's autism.

This is not the end. This is not the whole deal. There are two sides to the coin. George is witty and vastly intelligent. He is loving and compassionate and funny and generous. His empathy is beyond bounds. His hugs are to be treasured. But when we are late for school, when the children aren’t quite presented as they should be, when we have to leave a situation before things fall apart, when he’s so filled with emotion that he scares himself and his fear and frustration come out in cries and yells – this is autism too. It doesn’t need bald stares or snap judgements. It just needs your understanding for a little while.

An Autism Morning

It has been a couple of months since George (seven) received his very welcome diagnosis of high functioning autism. It was a long process, but CAMHS (Child and Adolescent Mental Health Services) were wonderful and diligent, and we went away with what we needed. Now we're in a waiting game for more help.

(Credit. Creative Commons)

Some mornings with George can be very hard, involving screaming and shouting, hitting and biting. Everyone will be late for school. Everyone will emerge frazzled, stressed, wondering where we went wrong. But often even the milder mornings are difficult.

This morning George's shoes had to be just right. We had to stop on the pavement to get the tongues sideways because I straightened them when I made his shoes tighter, because they were too loose for him. His shoes were too loose because I'd had to dress him this morning, like we do most mornings, but this morning he was introverted and unresponsive, so I had to put the shoes on while his feet were upside down. The inside of his shoe had felt sticky, and needed more adjustment. Now the tongues of his shoes were wrong and had to be just at the right angle, with the tab sticking out, the straps done up just the right amount. I had to crouch with him in the street while he shouted at me, wondering what the neighbours must be thinking. I stood hovering some yards away from him while he screamed 'Wait!' because I was trying to simultaneously watch Ben (four) who had run to the end of the street, and be there for George, who was two beats away from a collapse.

I could have told him not to be so silly, I could have left his shoes and become impatient, told him we would be late for school, told him we didn't have time to fuss about things like that. If I had done that I would have left him screaming or crying or violent, so I went along with what he needed. Not wanted, needed. It's not about whims and fancies with him. It's about having to have things exactly right, or everything will be wrong.

We fixed his shoes, and walked on. None of us were allowed to walk in front of him on the way to school. How do you explain to a four year old that he can't run ahead of his big brother because we don't want him to have a meltdown? All I can say is, 'We don't want George to go into rage mode,' and feel bad about characterising something so out of George's control in that way, but knowing it's the only way that Ben might understand. In rage mode George might kick out or hit. He might scream and shout. He might collapse onto the ground like a dead weight. No, we didn't want that to happen.

This morning on the walk to school George just wanted to be left alone. He didn't want interaction. He didn't want people to look at him. He just wanted me to be with him, no one else. When he's like this he can be furious one moment, and then crooning with delight and gently stroking a dog on the path the next.

We stopped to get his coat done up just right, and of course Ben ran off again to the end of the next road, the busier road where the cars come down fast and where this week the lollipop man is off sick. It's hard to pay attention to Ben while also looking after George, so Oscar, who is now nine, had to watch Ben and keep him from the road.

This morning was a triumph. There are days when he is better and days when he is worse. Today could have been a bad day, it could have been lying on the ground screaming, kicking, biting. It could have been me trying to carry George and two school bags across the field. But today we got George into school willingly and relatively happily, because I stayed calm and patient, and because although George was feeling bad, he wasn't too bad. This is a sliver of what it can be like with George on a so-so morning. I know a lot of people have it much worse, but it would be nice if the people who don't have any experience of autism understood how even the easy days can be hard.

The Bowling Party

Today George (almost 7) went to a friend’s birthday party. It was bowling, which he was excited about, because he’d never been before. But of course because he’d never been before it was also a troublesome thing for him, in a typically aspie way. He behaved with perfect Georgeness, but with gentleness and understanding we avoided a meltdown.

'Bowling Shoes' by John Walker, on Flickr.

On coming in through the door he was excited of course, but when his friend’s mum said hello to him he instantly collapsed onto the floor and rolled under the pool table and out the other side. In his cat-like way he acted as if that was the perfectly proper way to get across the room.

The first real problem came with the bowling shoes. I tried to take it in a gentle way, warning him he would have to change his shoes and taking him to show him what the shoes would be like. We’ve had plenty of experience with the trouble of shoe changes with him when taking him to buy new shoes. It’s a change, and worse still, a change under pressure. While all the other boys were excitedly taking their shoes off and handing them over the counter, George was crouching in the corner hiding his feet under his body. He didn’t want to do it, he didn’t see the need for different shoes, he didn’t want shoes with laces.

I noticed some of the shoes had velcro straps, and luckily they had some in his size. But this still meant getting his shoes off him. We managed this after a little time, but he didn’t want to put the bowling shoes on. He tried, but they felt wrong, and the two velcro straps were joined together instead of separate. He kept asking me sporadically through the party why the straps had to be joined together. Because I explained to the lady behind the counter that he had autism she was patient and although she shouldn’t let him in without shoes she was flexible enough to let him go in carrying them.

'The Eyes Have It' by Vagawl on Flickr (cropped to a square.)

The bowling alleys were a difficult place too. It was noisy, bright, overwhelming. The balls smashing into the floor, the sound of the pins being knocked down and picked up again, talking and music and excited children bouncing about like electrons in an atom. It was a lot to take in. So he hid behind the seat back and then sat in a corner for a while and someone else took his first turn. His friend’s mum was patient and understanding and tried gently to bring him out of his shell, explaining to her son when he asked why George was hiding that he was just a bit shy.

Then he began to engage. ‘Mummy, maybe when I’m not shy I can have a go,’ he said. When he decided it was time to have a go, he did really well. He engrossed himself in lining up the balls in order as they came out of the machine, putting one on each side. (I was more bothered by the odd blue ball than he was. All the rest were light orange or dark orange and could be lined up nicely.) The holes went on top and presented him with a shocked face.

'Bowling Ball' by Jonathan Keelty, on Flickr.

After a few goes he even decided that he wanted his shoes on. They stayed on for about two minutes, and then suddenly it all became overwhelming again. He didn’t like the taste of his drink. He lay under the bench. The shoes came off. He was ‘bored’ of bowling and wanted to go now. He had to walk away and watch through a glass screen for a while. Then after his self-imposed break he slowly sidled back, and finished the game.

Later he managed the chaos of McDonald’s with grace, and as we walked back into town he had fun trying to spot lines of three cars of the same colour in a row, a game of his own devising.

I was proud of him today. Together we managed things so that he didn’t find things too overwhelming and he didn’t have a meltdown. He was eased gently in and when he needed time he went off and took it. Instead of breaking down and spoiling things for everyone, we got through and he had a good time. What really gladdened me though was that everyone around him was also patient and understanding. No one decided he was rude or disruptive (or if they did they kept it to themselves.) They accepted that he does things in his own way. That’s just the way George is.

A Little Life of George

It’s hard work being George. It really is. Currently he’s not diagnosed with anything and he’s waiting on assessment, so I won’t make any assumptions here. But this is what it’s like being George. (I feel the need to remind you again that these aren’t my children’s real names.)

From Chaos to Order, by Sebastien Wiertz on Flickr. Kind
of the wrong way round, but do you know how hard
it is finding photos for things like this?

Life is endlessly frustrating for him. People talk to him and make demands of him and don’t know his reactions unless he verbalises them, which I feel irritates him a lot. People annoy him by distracting him or breaking into his routine. They ask him to do things he has no interest in, like dressing himself or tidying up. If he’s asked to do homework he usually collapses into a heap, or turns himself upside down, or shouts or screams. He’s asked to go to school and mix with crowds of people when really he’s best one or two on one. Apparently small and insignificant things can throw him right off the rails. These issues don’t bother him every time, but they do more often than not.

Yesterday was a doozy. George was playing with a toy car in the school playground. When the time came to go home he realised he’d lost it. He wanted me to look for it, but since Ben (three) had already walked out through the gate with Oscar I needed to follow him. I told George he could quickly have a run around to look for it himself, and catch me up, but he wouldn’t. I understand the paralysing fear of doing something like that, but I still had to catch up with Ben, who’s too young to be out of the school playground without me.

Toddler in the Middle of a Tantrum, by Stephanie
Chapman, on Flickr. This is an 18 month old. It doesn't
get easier when they're six years old.

This precipitated a tantrum of epic proportions. Everything became a scream. He screamed at me for calling the playground a playground. (He wouldn’t tell me what it was called.) I told him I wasn’t arguing about taxonomy because I had to go after Ben. A lot of hanging on to my arm and collapsing onto the ground ensued. It’s hard to describe the horror of trying to deal with this kind of thing when you’re Aspie yourself and get completely overwhelmed by the chaos of someone else’s meltdown. The screaming and shouting and screaming from a six year old who is consumed with rage at not being able to control his own circumstances. Trying to walk carrying multiple bags, coats, and a guitar, with a tantruming child hanging off one hand and a three year old trying to hold the other. The world condenses down to a place where the only thing that exists is your child, screaming and kicking and slapping and collapsing on the ground and shouting at you and becoming enraged at anything he can get a hold of. ‘Stop walking like that, mummy.’ ‘You’re making me do x, mummy.’ ‘You’re making me bored, mummy.’ It is impossible to adequately describe how enveloping and affecting this behaviour is. By the time we had got across the field I was at the point of beating my head into the conveniently place electrical substation. I needed to have my own meltdown. Instead I managed to hold off until we were in the house where I went into shutdown mode, where I could barely speak or move for the next few hours.

These kind of meltdowns don’t happen every day, but there is always something. Here are a couple of examples of what it’s like to be George.

Sometimes he wants a drink of water and I can’t find the water bottle that I carry with me most of the time. He relies on drinking from this bottle. He can’t go to the tap and get a drink in a cup because – well, because it’s not what he does. He has to drink from my water bottle. He either shouts or screams or collapses.

Cucumbers En Route to Pickledom, by Stacy Spensley on Flickr.
George would love this. He is made very happy by cucumbers.

One day he was given two slices of cucumber at dinner (one of them was very thick). He almost always has three slices of cucumber. His response to something like this is a burst of fury and outrage. I got out my penknife and tentatively cut the thicker slice in two. Calm and happiness was restored. He’s not being awkward or picky or over dramatic. He is genuinely thrown off track by having the wrong amount of slices, and things won’t be right until the normal routine is restored.

Recently he’s been wearing black school trousers every day. One morning his black ones were dirty and I had to give him grey. His tantrum lasted through getting dressed (which I had to do by holding him down and forcing the clothes onto him) and through most of the walk to school. He had to be carried at times (and he’s quite a solid 6 year old). It wasn’t until I thought the time was right and I crouched down and hugged him very tightly that he could grow calm.

Sometimes we ask him stupid questions, like, ‘Do you want shoes or boots?’ ‘Do you want to wear socks?’ ‘Do you want sauce with your dinner?’ Often the answer is a very indignant, high-pitched scream of ‘yes!’ or ‘no!’ depending on his preference. He’s not just being stroppy. He’s genuinely indignant because I believe he expects us to know.

If he can do things as he wants to things go on pretty well. He needs to stand in the right place to brush his teeth, use the right toothbrush, always with the right toothpaste. I don’t argue with this, so things are fine. But if I told him he couldn’t stand on the left side of the sink leaning on the bath or if I suggest it’s late and he just go to bed without worrying about his teeth, he would get very upset.

It gets harder when we go out of the house. He can be very talkative but he doesn’t like speaking to strangers. A lot of interactions are made non-verbally. He’ll hide his face or stare at the floor. He makes a thumbs up sign for thank you. He whispers things to me to tell other people. He points or nudges or obliquely indicates things.

Waiting Room, by Robert Couse-Baker on Flickr. George would
be under the chairs by now, with his face against the floor
or the wall.

Even worse are medical appointments. I can’t get him to open his mouth to the dentist and I’ve never dared making him an official appointment. He spends most appointments hiding under chairs or screaming. At a recent speech therapy appointment he spent the waiting period mostly under chairs. He had to be manhandled into the room, where he stood in the corner with his face to the wall shouting, ‘Stop talking, mummy,’ until he switched to hiding behind some chairs.

He left that appointment by rolling on his side out of the room, down the corridor, and across the reception area.

There are a lot of things to be grateful for about George. He is the most sweet and loving child. He is creative and kind. He’s doesn’t seem physically sensitive like Oscar, and he’s not particularly picky over his food like Oscar is either (the list of things that Oscar won’t eat because of taste or texture is very, very long, whereas George will eat olives and couscous and houmous and drink concentrated lemon juice, neat.) He is wonderful and imaginative and generous. His smiles are like the sun coming out. He gives spontaneous hugs and gifts of food or flowers. He is the kind of child who can roll out of an appointment with complete aplomb, and I think that’s the kind of thing to which we should all aspire.