Visible means of support

When Euan was first diagnosed (an event that seems a lifetime ago now), we were confronted with a void. Like many families coming to terms with autism, we felt terribly, achingly alone. This wasn't strictly true or fair on the various professionals who came and went, called us with advice and thrust helpful leaflets under our noses. All that support was good and instructive, but none of it felt very comforting.

In short, we grieved. And it hurt. And one thing that no amount of expert advice can do is take the pain away. Which is why I feel that one of the most important things we did at that time was join a support group. It reminded us that there were other parents in the same situation as us, who we could learn from or just lean on when we needed a crutch. It allowed us to talk about our experience with people who had been through the same process, who wouldn't judge us, feel the need to utter empty words of comfort, or console us with the thought that there were other people in the world who were had it worse.

Crucially, there was nothing formal or structured about the group’s meetings. Every two weeks we get together in a school staff room, put the kettle on, sit around and chat about whatever's on our mind. Trained nursery staff look after the children in a separate playroom. It gives us a rare moment to breathe and talk freely as adults while knowing our children are in good hands. A couple of times in the summer we have a day out together, and once a year some of the families spend a week in a holiday park. Many autistic children don’t cope well in places like hotels and airports, struggle with major breaks from routine and have a poor sense of danger, all of which can severely curtail their families’ holiday options.

In the past we've raised funds for the group through appeals such as Children in Need and Cash for Kids, as well as our own events like charity discos. However, as we’ve recently elected a government who've decided that the disabled should have their services cut so that bankers can continue to binge on bonuses, these sources of income are drying up. In any event, though, giving to charity is bound to be one of the first casualties of a recession. So on January 23rd a few of us will be donning red suits and false beards and running the Santa Dash in Glasgow to raise money for our group.

Small local charities don't need a great deal of money and can make a real, tangible difference to people's lives. In the case of our group, the funds pay for the creche facility for about 20 nights a year and cover the cost of the annual outings. Our members come from all walks of life: what brings us together is that we all live in the south side of Glasgow and have children with autism. Life isn’t all chaos and despair. Our children are a joy, not a burden, but they sure as hell put us through the mill sometimes. And at those times, the 90 minutes a fortnight when we get together over a cup of tea and share our experiences can feel like a lifeline.

If you’d like to sponsor me and support the South Side Communication Disorder Group, please get in touch here for details of how to donate. Because of the size of the charity we haven’t been able to set up a page with justgiving or any other online donation service.

If you live in the UK and want to find out if there’s a support group in your area, the National Autistic Society has a comprehensive Autism Services Directory on its website.

The grammar of emotions

This blog entry was meant to follow straight on from the previous one. Somehow or other seven weeks have happened in between.

On one of the first occasions I visited a therapist in connection with Euan, I raised the subject of empathy. I was starting to understand that autistic people struggled to connect with others around them, and asked if Euan would ever get into a situation where he felt sorry for someone, but didn't know how to express it. 'Oh no,' she replied; 'an autistic person wouldn't think like that'.

This seems to have been the prevailing view until quite recently. Autistic people didn't identify with complex feelings because they just didn't have them. Their emotional lives were elementary and functional; they were essentially monochrome, oscillating between docility and extreme anxiety with nothing in between. It was supposed to be comforting, implying that they were inoculated against the nuances of deceit, betrayal, double-dealing and insincerity. They were innately honest, since they didn't perceive the value of saying or doing things purely for appearance's sake.

Yet the more I saw of autism, the less satisfied I became with this explanation. Not least because it seemed to alienate autistic people from mainstream society: if they didn't grasp shades of emotion, it implied they couldn't form deep and meaningful relationships. But also because it didn't chime with what I observed in my children's development. Although he struggled to intuit what other people were feeling, he was capable of understanding them if he was given enough clear signals. When Magteld went to bed one afternoon with a migraine, he went upstairs and got himself ready for bed without a word of fuss, even though this is usually an exhausting operation that can last several hours. When Adam swept his juice off the table in a rage and soaked himself, Euan screamed in sympathy, then fetched the kitchen roll and diligently mopped up the spill. These are not the actions of someone who can't feel your pain.

Here's a more contentious example, but intriguing nonetheless. During the summer we went to see the boys' great-grandmother in Holland. She's been widowed for some years, lives on her own and doesn't have much social contact. Her house has a large L-shaped living room that feels empty even when half a dozen people are sitting in it. Usually Adam is stubbornly indifferent to family members he doesn't see very often. But when we came to leave his great-grandmother after visiting for two hours, he suddenly started crying plaintively and calling out for her. It was so out of character that the only explanation we could think of was that he somehow picked up on her sense of loneliness.

The more I see of these responses, the more I think the problem is not so much a lack of empathy: with the right cues their empathy can be remarkably sophisticated. It's more an inability to decipher those subtle signals that people give out at times of emotional conflict - a failure to jump the chasm between what people think and what they say. If it's made explicit to Euan that someone is feeling sad, or tired, or sick, he can respond appropriately, but if you wait for him to work it out for himself, expect to be disappointed. A few autistic people have told me of the painstaking efforts they made to understand the invisible rules that others lived by, and the light-bulb moments when they manage to work out the correct response in a certain situation. In some ways it's like the difference between learning a native language and a foreign one: either way you have to learn the grammar, but the foreign student needs a textbook.

Biting the silver bullet

At the end of a superb and insightful interview in Wired magazine (I urge you to read it if you haven’t done so already), Ari Ne’eman is asked a question that often lurks in discussions of autism: ‘If someone offered you a pill to wake up tomorrow without autism, would you take it?’ His answer was honest and devastating, in the sense that it was a direct assault on the emotions that underpin such well-meaning enquiries. He said: ‘That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else?’
Ne’eman is a 22-year-old autistic man who was appointed by Barack Obama to the US National Council on Disability last December. Not everybody was enamoured with his answer to the ‘autism pill’ question. Some parents attacked him for taking such a dismissive stance to their long-cherished dream of finding a cure for autism. It is a dream that has been enthusiastically, at times aggressively, championed, by campaigning charities such as Autism Speaks, which has ploughed millions of dollars into research into the causes of, and possible medical treatments for, autism. Faced with that kind of emotional input from parents who are gripped by the wish for their children to grow up normal, it takes a fair amount of kind of courage to call their hopes and desires ‘silly’. But if Ne’eman’s choice of words can change the flow of the conversation around autism, he will have performed a great service.
The ‘magic pill’ hypothesis comes up frequently in discussions about autism without anyone pausing to consider what the question actually means. In essence, it presupposes that autism is an alien or hostile force contained within the autistic person that could, if only we possessed the right medical knowledge, be extracted and disposed of at no cost to the host. Autism Speaks' I Am Autism video took this philosophy and tied it to a sledgehammer, addressing ‘autism’ directly as an enemy agent that parents would fight tirelessly to defeat using the irresistible forces of love. Even a serious and thoughtful commentator such as Michael Blastland, in his book Joe (which, again, I recommend highly), takes time out to express the wish that his son could be released from his autism.
In the case of parents struggling to bring up severely autistic or non-verbal children, these sentiments are understandable and hardly surprising. Yet at the same time, you only have to look at the thinking behind the ‘magic pill’ question to see why the idea is so abhorrent to autistic people themselves. It gives a mythical, alien quality to their condition and, by extension, to their essential selves. Or, to quote Ne’eman again: ‘That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.’
Taking the more severely autistic of my children as an example, there are two points I’d argue here. The first is that as far as I can see, there is no ‘autistic part’ to Euan’s brain that can be safely removed; nor is it a filter that distorts the outlook of an otherwise ‘normal’ person. It is an intrinsic part of who he is. Suppose for a second that a ‘magic pill’ really does exist. One night, before going to bed, he takes it. The next morning he wakes up a fundamentally different person. The chemicals in the pill have triggered a violent change in his personality that affects the way he sees, hears, feels, interacts with and understands everything around him. His world is suddenly filled with emotions and sensations that he could never directly perceive before. Thanks to therapy, he probably knows they are there and has developed ways to accommodate their presence, in the same way that a blind person learns the layout of the furniture in a room. But now he has to cope with them in the raw, through the strange, intense contortions of people’s faces that now scream for his attention, along with a whole range of nuances and gestures that the rest of us spent our entire childhoods and early adult lives learning to interpret (and still frequently get wrong). Faced with such an explosion of emotional input, the only reasonable reaction that I can imagine would be a total nervous breakdown.
Secondly, the ‘magic pill’ aspiration, however earnestly expressed, symbolises a desire to relieve the parents’ anxiety and discomfort, rather than the ambition to improving their children’s quality of life. I’ve always declined to join the ranks of parents that vow to ‘fight’ their children’s autism, preferring to negotiate with it instead. Autism is a condition that can be mitigated through therapy, but the person will always be autistic. They may become high achievers, such as Temple Grandin; they may marry, have children of their own and enjoy the company of a (probably small) circle of supportive friends, but their relationship with the world around them will always be an autistic one. The role of the parent, in my opinion, is to see that they don’t suffer for it; the role of society is to exploit their abilities while providing for their disabilities. It doesn’t seem too much to ask.
Much of the protestations on the part of parents boil down to a single sentence: ‘We only want the best for our children.’ This is true: of course we do. But we need to understand that it is not enough to be well-meaning. Accepting autism means accepting there is no silver bullet that will cure our children. We have to understand them from the inside out, to see things from their point of view, to share their vision of the future rather than impose our own, and to give them the thing they really feel the lack of: empathy.

The sense of self

As Euan gets older his behaviour becomes more evidently autistic. The lag between him and other children of his own age is unavoidable. Three-year-old children who don’t speak to strangers are quietly endearing; five-year-olds are shy and withdrawn; seven-year-olds are strange and uncommunicative. No doubt as a teenager he’ll be labeled sullen and anti-social. Last year, when he was in mainstream school, Magteld took him to a birthday party. When I asked how it went, she told me he’d spent most of the afternoon licking the goalposts. He didn’t go back this year. I tell myself it’s because he’s at a new school, and in any case it’s probably a mercy.
Often he struggles visibly to make sense of the world around him. It can provoke sudden, violent outbursts of rage or tears if things aren’t going his way, and not just in the normal sense of getting what he wants. He can be reduced to floods of tears if someone else mentions something that’s on the tip of his tongue – almost as if he fears the uttered words have been stolen from his mind and he can’t retrieve them.
Language, in a wider sense, seems to function differently for Euan. We’ve observed the familiar autistic traits such as echolalia and pronoun reversal. In Euan’s case, though, it seems to be something more profound. It’s not just the way he sees other people and objects: I get the sense it reflects the way he sees himself.
As I said, the early examples followed a familiar pattern. Euan would refer to himself in the third person and mix up ‘I’ and ‘you’. This is a stage all children go through, but it’s more pronounced and lasts longer in those with autism. I remember being at my parents’ house once and hearing his voice from the open cloakroom door: ‘Where’s Euan? He’s in the toilet.’ What’s interesting is that even now, when he’s sorted out ‘I’ and ‘you’, he still re-enacts snippets of dialogue in this way. Often it’s accompanied by an action: if he has an impulse to do something he shouldn’t, like tip back his chair or shout at table, he’ll often do it and immediately tell himself off for it. In extreme cases he’ll grab his own arm and drag himself into the hallway to stand in the corner.
Pronoun switching is more complex too. For a long time he’d say things like ‘she’s a boy’ and persistently switch ‘he’ and ‘she’. Once he told us about a boy in his class who had gone to hospital. He had written the story in his school book with his teacher and rehearsed it, but even in writing he insisted in saying ‘She was OK’ as the last line. Even now he has trouble applying Mum and Dad to the right parent.
The question naturally arises: is there something fundamentally different about Euan’s self-perception? The few studies I’ve found about this tend to argue against this – such as Dawson and McKissick, who write: ‘It was concluded that the autistic child's social deficits are not due to a basic lack of differentiation between self and other.’ It may be that this is a phase that Euan grows out of as he becomes more socially and linguistically competent. He has no problem differentiating between himself and other people: he uses ‘I’ to talk about himself, such as ‘Look, I made it’ when he builds a Lego model. But it still seems as if there’s a distortion in the way he perceives events that involve him. It’s almost as if he tries to view them from outside himself and replay them in his mind later, like a chess player going over the moves from a previous game to hone his strategy. The more I think about it, the more I get the impression it’s to do with control: if things happen that he doesn’t have command over, he has to go back over them, again and again, until he’s mastered the situation. It’s an untested theory, but it would explain much of the frustration, the anxiety and the constant restless activity. Social interaction is a skill which Euan has to learn painstakingly, through trial and error. That he’s prepared to put so much effort in is actually quite remarkable.

Starting School

The school holidays have started. When they finish in seven weeks’ time, Adam will go to school for the first time. And slightly unexpectedly, he’ll be going to the local primary school rather than a special needs institution. It’s a decision we haven’t taken lightly, but it feels like the best choice we could make at this time.
Adam was diagnosed with autism in April. It was much easier to take in than Euan’s diagnosis, because Magteld and I could spot the early signs and health professionals were less guarded when they knew we already had one autistic child. There was a broad informal consensus that he would have a diagnosis so that when it came, it was a relief rather than a shock.
The most pressing issue was where to send him to school. Our first instinct was that he should go to a special school, like Euan’s, where the smaller class sizes would be less intimidating. One of Adam’s main difficulties is extreme reticence and selective mutism when faced with unfamiliar people or situations, and we reasoned that he was more likely to settle into a school routine if he was in a small group where he could get plenty of one-to-one attention. We had seen Euan come on in leaps and bounds since he moved to a special school, where his curriculum is tailored to take account of his learning difficulties.
We also had the experience of Euan’s first year at mainstream school. Although he eventually settled well into the class and made good progress in some aspects of learning, such as reading and writing, it was plain to see that he was in the wrong place. He was quickly distracted, and when the noise or activity around him got too much he became disruptive and would have to be taken out of class. Things improved when he was allocated a classroom assistant, but it was only through copious support from the staff, particularly his extremely patient class teacher, that he made any headway at all. It would have been unfair both on Euan and the school to have kept him there any longer.
However, when it came to selecting a school for Adam, other factors came into play. In the first place, there was no place available at the school Euan attended. This, we were told, was because the application could only be made once he had been formally diagnosed. It took well over a year for Adam’s diagnosis to be completed, and by the time it came through Euan’s school was full. The alternative was a different special school, three miles from home in the opposite direction and six miles from Euan’s school. And when Magteld went to see it, she saw it was far from an ideal option. I won’t go into the exact issues here, but the benefits were outweighed by the practical problems.
That left one realistic alternative. Magteld hastily arranged a meeting with the head teacher of our local primary school to see if Adam could be accommodated there. Though the experience of Euan had been taxing, we were reassured by the efforts the school made towards him. Moreover, while Euan has moderate learning difficulties, Adam has shown every sign that he is capable of following a mainstream curriculum in the right circumstances. The main concern is that he won’t have a classroom assistant because of a lack of resources, but the school’s attitude was positive and encouraging. On that basis, we decided the mainstream school was the best option.
We’re acutely aware that for all our careful preparations, it can still go wrong. The ongoing reorganization of Glasgow’s schools means Adam could be in a class of 30 children. If he struggles to settle he could easily get lost in the maelstrom. But on the positive side, we’ve seen that once he gets into his stride and sheds his inhibitions he can thrive. He’s keen to learn, able to concentrate and willing to socialize in spite of his poor communication skills. And the entire episode has taught us the value of taking an active role in Adam’s care. We had to recognize that the system was offering him a poor choice, then go out and find a better one.
It’s difficult as a parent to go against the advice of experts. It’s natural to worry that you’re succumbing to delusions about your child’s capabilities, especially with a condition like autism that can be hard to understand or analyse rationally. But I’m comfortable with the thought that we’ve thought long and hard, and informed ourselves as well as we could, before deciding where to send Adam to school. Whether it’s the right decision is something we’ll find out in due course.