Saturday, 19 September 2015

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.

Friday, 3 July 2015

The First US Measles Death in 12 Years

So here it is. Here's the result of the hysteria and fear. The US has seen its first measles death in twelve years.

And now will people vaccinate their kids? This woman had a weakened immune system. Did she die because she caught measles from a kid whose parents were worried about less mercury than is in a tuna sandwich, or the non-existent spectre of autism from vaccines, or 'big pharma,' or any of the other spurious reasons anti-vaxxers come up with? Maybe she wasn't vaccinated because of similar fears? Who knows. She's dead, anyway. No more breathing, no more smiling, no more thinking, no more touching the lives of people who loved her, because of an illness preventable by a single injection.

There are people all over the world who can't be vaccinated for various reasons. Those reasons shouldn't include 'I just don't trust vaccines,' or 'I don't want my kid to get autism.' There are people fighting hideous illness that preclude the possibility of vaccination, people with immune disorders that mean they both cannot be vaccinated and are at greater risk of death if they do catch an illness like measles.

'Vaccination has saved more lives and prevented more serious diseases than any advance in recent medical history.' When you let your unvaccinated child go into town, visit Disneyland, go to school, you're leaving every vulnerable person you encounter open to the possibility of death.

Monday, 18 May 2015

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.

Wednesday, 25 March 2015

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.

Sunday, 21 December 2014

The Lie of Father Christmas

There’s a rash at this time of year of people lamenting the terrible lie we tell to children. You know, the one about the fat man who comes down your chimney on Christmas Eve and leaves presents for good girls and boys. How can we keep perpetuating this terrible fantasy? they ask. Wouldn’t it be better to instruct our children in science than have them believe in some kind of overgrown fairy?

Floodllama, Santa Claus is coming to town, on Flickr.
Not hugely relevant but an awesome picture.
I have to say that of all the lies parents tell their children, this one is a long way from being the worst. ‘Honest, it won’t hurt.’ ‘You’ll enjoy it when you get there.’ ‘You look so beautiful.’ ‘Of course you’ll get a boyfriend/girlfriend.’ ‘Wow, you did that so well.’ These are the kind of lies that seem kind at the time but can leave you let down, betrayed, feeling misunderstood.

Father Christmas is the best of lies, and I’m not so sure that it really is a lie. (I’ll come to that.) Father Christmas is a lie that lets you get so excited on Christmas Eve that you can’t sleep. It’s a lie that makes magic sparkle in children’s eyes. It’s a lie that allows you to drop off at night and then wake up in the morning with that curious weight on your feet, to open one eye and see something lumpy and indistinct lying across the bottom of the bed, to sit up and open presents without any preamble, any manners or holding back.

Bill McChesney 5176 Guess Whooo's coming to town, on Flickr.
This is not Father Christmas. This is a man in a suit.
As you get older you think, ‘I’m sure I saw that in mum’s shopping,’ or ‘Isn’t it odd that Father Christmas shops in Tesco too?’ But it’s not like the moment after you’ve had the immunisation and realise, eyes wide with shock, that it did hurt and mummy didn’t tell the truth. It’s not like the moment when you objectively look at the outfit you put together and realise you looked an idiot. It’s a moment when you realise that for all these years your parents have loved you enough to help you believe in something wonderful.

And that’s where we come to the other thing, the fact that Father Christmas isn’t a lie. Father Christmas is someone who loves you, who brings light and kindness into your life. Father Christmas is the person you never see. Never mind men who dress up in synthetic red suits and plastic beards and call themselves ‘Santa’ and sit in grottos in garden centres and shopping centres. They’re not Father Christmas. Everyone knows that he comes when your eyes are closed, and that you must, must, never be awake when he’s there. He’s invisible, incorporeal. He is a manifestation of love.

I have always remembered how Laura Ingalls Wilder summed it up in On The Banks of Plum Creek. I couldn’t do it better.

Ma!” Laura cried. “There IS a Santa Claus, isn’t there?”

Of course there’s a Santa Claus,” said Ma. She set the iron on the stove to heat again.

The older you are, the more you know about Santa Claus,” she said. “You are so big now, you know he can’t be just one man, don’t you? You know he is everywhere on Christmas Eve. He is in the Big Woods, and in Indian Territory, and far away in York State, and here. He comes down all the chimneys at the same time. You know that, don’t you?”

Yes, Ma,” said Mary and Laura.

Well,” said Ma. “Then you see–“

I guess he is like angels,” Mary said, slowly. And Laura could see that, just as well as Mary could.

Then Ma told them something else about Santa Claus. He was everywhere, and besides that, he was all the time.

Whenever anyone was unselfish, that was Santa Claus.

Christmas Eve was the one time when everybody was unselfish. On that one night, Santa Claus was everywhere, because everybody, all together, stopped being selfish and wanted other people to be happy. And in the morning you saw what that had done.

If everybody wanted everybody else to be happy, all the time, then would it be Christmas all the time?” Laura asked, and Ma said, “Yes, Laura.”

- Laura Ingalls Wilder, On the Banks of Plum Creek

Saturday, 20 September 2014

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.

Wednesday, 9 July 2014

Art, and Artists' Morals

I have to say, I liked Rolf Harris’s portrait of the Queen. Was it great art? No, I don't think so. But it showed a side to her that is sometimes hard to see in official depictions. A friendly side, a humorous side. Watching the documentary that accompanied the painting I was struck by how Rolf drew her out, how he seemed to reach the human in her, the real elderly lady with a family and loves and hates and ordinary everyday troubles. No, it wasn't Michaelangelo or Picasso or Hockney, but it was a good painting.

But of course, all that has changed.  One wonders if the Queen was just another woman to be sexualised. One wonders at a man who could present such a friendly and kind persona to the world while using his position to abuse and traumatise the women and girls that he came into contact with. Apparently both the BBC and the Royal Collection disavow any knowledge of the painting’s whereabouts. It has been dropped like a hot potato. The last thing either great institution want is to be associated with a scandal of the magnitude of the Rolf Harris scandal.

But if we put aside the horror of what Mr Harris was doing over all of these years, it leaves the question of how we view art in relation to the artist. What if Picasso were revealed to have been a serial rapist? What if Leonardo da Vinci were a paedophile? What if Frida Kahlo tortured animals? What if Constable beat his wife?

Allen Ginsberg (Source: Wikimedia Commons)
It seems to be established in various places that the Beat poet Allen Ginsberg was a paedophile. I haven’t read any Ginsberg, but I would quite like to. But I feel awkward about this. Can I read and enjoy a man’s writing knowing that he has abused children in the most horrific way? Reading Lolita gave me a lot of conflicts (Should I enjoy the book? Should I attempt to understand the protagonist? Does it make it different now that I have my own children?), although it seems that Nabokov did not share the feelings of his protagonist in that novel. I know, as a writer, that it is quite possible to explore darker issues in writing without supporting the actions that you’re writing about. Often writing about them is an attempt to understand and process the fact that such things occur.

It is, I think, a far easier moral undergoing to read or view art about disturbing subjects than it is to view art streets away from such things but with the knowledge that the artist was a damaged and, more crucially, a damaging human being.

Leonardo da Vinci's Mona Lisa (Source: Wikimedia Commons)
What would we do if Leonardo da Vinci were a paedophile? Would we destroy his works and denounce the biographies? Would we attempt to explain and understand merely so that we could go on enjoying his work? I suspect the latter. In the case of a mediocre artist like Rolf Harris it’s easier to push his work under the carpet because it has so much less value to his audience.

I’m still split on where we separate art and artist. I’m still convinced that a majority of people are willing to forgive sins if the time and distance from the artist and the value of the work is great. I’m still convinced that people are happier to denounce an artist’s work if the work never had that much value in the first place.

But is a painting an artist? Is a book an author? It’s something to think about over your morning coffee. Rolf Harris presented us with a human, smiling Queen, perhaps his one, small but positive, contribution to art. Art is in the eye of the beholder, of course, and that’s what it meant to me, even if others may not share this view. Should we now throw that away?