On Language

The public perception of autism has been transformed in the last decade or so. Even four years ago, when Euan was diagnosed, it received far less attention in the media than it does now. Representations of autism then were often restricted to Rain Man and a few exceptional individuals of the kind who used to be labelled ‘autistic savants’, such as the artist Stephen Wiltshire. Much as I admire Stephen and his work (see above), focusing on his talents doesn’t advance the cause of autistic people a great deal, because becoming a world-famous artist is only ever going to be an option for a very small number.

Lately there has been a wider focus in the media on the nature of the condition and the kind of help that autistic people need to cope in everyday life. Autism is a much more talked-about condition than it used to be, and in essence this has to be welcomed. Things have come a long way even since two years ago, when the Daily Mail published an appalling column by Carol Sarler in which she intimated that parents would be better off if they were able to abort autistic children. I’ll declare an interest here: as a freelance journalist, I work two days a week on the news website of Scottish Television. STV isn’t outstandingly good or bad in its coverage of autism, and in the media industry as a whole I genuinely feel the climate is improving.

Yet misperceptions endure, most noticeably in the language used to describe autism. It doesn’t help that this is often the subject of some debate within the ranks. For instance, the National Autistic Society advises journalists to say “a person with autism” rather than “an autistic person”. This reflects the trend for “people first” language in discussing disabilities, which is a noble sentiment, but in the context of autism I feel it is rooted in flawed logic. The phrase “autistic person” reflects a number of things, among them the quirk of English grammar that insists that adjectives precede nouns regardless of which word is deemed more significant. If you translate it into French, une personne autiste, the “people first” problem solves itself, and yet there’s no evidence that the French attitude to autism is more enlightened than ours as a consequence.

More seriously, I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity. It’s partly the reason why this blog is titled ‘Autistic Dad’. (As a working journalist, though, I recognise the need for consistent and agreed terminology, and will use it even if I privately disagree with it.)

Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.

And then there’s the question of whether to say “autism spectrum disorder” at all, since the word disorder is considered by some to be too negative. Here I’d come down decisively on one side of the fence. Autism might be an elusive term that covers a wide range of conditions, but “autism spectrum disorder” is a medical diagnosis. It’s not just about letting people make sense of themselves: it’s there to identify those who need therapy and intervention. Since the autism spectrum covers a wide range of both abilities and disabilities, the word disorder is essential to distinguish those children and adults who need medical assistance from those who have strong autistic traits but can cope unassisted. The urge to couch things in positive language is understandable, but we should be wary of the bleaching effect it can have on the more awkward and difficult aspects of autism.

These are not just technical points: language matters. It shapes perceptions and has a bearing on how the wider world interacts with the autistic community. In the case of autism, which can be hard to define and has been so entwined in myths and misunderstandings, it’s important to have an ongoing debate about language that reflects the changing perception of the condition. There are often good arguments on both sides and I’d welcome anyone who wants to put the opposing point of view.

Joining the threads

If looking after children is a full-time job, looking after autistic children is more like running a small franchise. This blog is about the various health and education professionals we’ve dealt with since Euan was first diagnosed five years ago. I should preface it by saying that as individuals, they’ve mostly been professional, helpful and informative. I recognise they have their own demands and pressures, that working conditions are far from ideal and probably getting worse. But from a parent’s perspective trying to bundle up that care and manage it can be a hideous tangle.

In the context of both our children we’ve come into contact with educational psychologists, speech and language therapists, occupational therapists, social workers, paediatricians, and clinical psychologists, as well as various school and nursery staff. (This is quite a short list: plenty of other parents would add sleep counsellors, dieticians, various other doctors and therapists, and even the police.) Some of them are assigned fairly quickly; for others (such as occupational therapists) there is a waiting list. Many services are only available once your child has been diagnosed – which itself entails a wait of between six and 18 months. Most of them carry out assessments and write reports. These often contain a referral to another expert or therapist – which means going on another waiting list and adding yet another phone number to the lengthening chain.

The exact nature of their roles is not always clear to begin with. For example, an educational psychologist will assess your child’s suitability for a certain type of school: should they be in mainstream or special needs education, and what classroom support do they need? It’s only later on that you realise that this is an obligation to the education authority, not the parent, and that their main criterion is to fill places in schools, in the context of increasing budgetary restraints. Once you understand that, you can start to understand why and how they make their decisions.

From the parent’s perspective, the hardest and most daunting aspect of the exercise is getting everyone to work to the same script. Since none of them has a leading role, that task falls to the parent. Magteld has spent much of the last three years organizing meetings between schools, health professionals and therapists, sometimes as many as three a week. And still people ask her whether she misses working full-time. The more frustrating thing is that after putting in so much work to bring people together, the parent is often the one whose voice is crowded out.

The other major issue is communication. Schools, doctors and therapists who aren’t in regular contact seem incapable of talking to each other (this is one advantage of special needs education, where therapists work directly with the school). Contact with parents is even more sporadic. When Euan was transferred from mainstream to special needs education, none of his records went with him. All the work that his class teacher had done to understand and accommodate his needs dropped into a black hole. In the meantime, Magteld had fought a largely fruitless campaign to keep in contact with his educational psychologist. After not hearing from the person for months, we learned from the school that they had been in to see him every week. No reports, no feedback.

Professionals will protest that they are doing the best they can for your child, and mostly they are, but this isn’t the issue. Imagine a house being decorated by four different teams, each with a different expertise. But instead of working together on the whole building, they each take one wall and devote all their energies to it. None of them work together or even pay attention to the other three walls. So one wall is weatherproofed to the max but unpainted, another is immaculately painted but the guttering hasn’t been done, and so on. And none of the teams ever stops to ask the homeowner if they’re happy with the state of the house. That’s how managing the care of an autistic child often feels, with the parent in the role of the homeowner.

As a rule, experts are by definition the best placed people to make these decisions, but it's parents who have to live with and manage the outcome. For that reason they need to be at the hub of the decision making process. Yet all too often, keeping them updated is an afterthought at best. Pushing them to the periphery because they’re ‘awkward’ or they ‘don’t understand’ ultimately wastes more time and effort than it saves – and it does nothing for the child.

Why can't they just act normal?

It’s a phrase you come to live with when you have autistic children, like a creaking floorboard or a dog in the street that won’t stop barking: ‘why can’t he just ...’ You hear it from teachers (though not, to be fair, at my children’s schools), from people in the street or the shop, from casual acquaintances or other parents. But above all, you hear it going round in your head like a refrain. Why can’t Euan just get dressed without being distracted by his Lego every two minutes? Why can’t he just watch a film without laughing loudly at every dramatic scene or kicking his legs in time with the characters on screen? Why can’t he just accept the fact that there’s no cheese in the house and he’ll have to have tuna on his sandwiches? Why can’t Adam just go downstairs and put his shoes on without lining up all his cars first?

At heart it’s a question about anxiety, but it’s also about anticipation. Autistic children seek comfort in routine because the world is a big confusing place. They look for cues and find them in the objects they know best. A report from a psychologist who observed Euan in school recently put this in perspective. Whenever the class moved from one place to another or started a new activity, he looked to another child or the teacher to prompt him. At playtime he waited for the other children to move before following them out of the room. Once he’s engaged in an activity he’s quite happy, but the transition between stages is difficult for him, especially if it’s interrupted before the end. Anything out of the ordinary raises his anxiety and make him agitate for the familiar. During a dance lesson he concentrated on the steps and managed to keep time with a partner, but as soon as he sat down he pestered his teacher to go back to class. On holiday or days out, he insists on going back to the car as soon as he’s seen what he came for. This might also explain why he’s suddenly much better at dressing himself now that he has a chart on his wall telling him what order to put his clothes on in.

And it’s this heightened anxiety that feeds back into my initial question. If I can’t have a cup of coffee before leaving the house in the morning, I feel mildly annoyed and probably a bit tired, but I quickly forget about it and start to anticipate on the next thing I have to do. But my autistic children don’t do this: they can’t shift between stages like this unprompted or anticipate what’s coming next. They need either a prompt from outside or a clue within the task that tells them that it’s finished and they can progress to the next thing. Deviating from the plan is literally unthinkable because they have nothing else to work with. The answer to the question ‘why can’t they just do it differently?’ is simply: ‘they just can’t.’

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.