Education: why it's not a matter of choice

I won’t be signing the petition by 38 degrees which calls on David Cameron to reverse his policy of ending the ‘bias towards inclusion’ in schools. Though I agree with much of the sentiment behind it, and I wouldn’t trust the Tories’ plans on education as far as I could throw Michael Gove (the precise measure of which, alas, I have yet to establish under laboratory conditions), I find it too simplistic an approach. Like the petitioners, I’m not convinced that there is a ‘bias towards inclusion’ at the moment, but I’m still less sure that there ought to be one. And the whole debate about ‘parental choice’ risks obscuring a more significant issue about how we support children who need extra help in the classroom.

During the 2010 election campaign Jonathan Bartley, whose son has spina bifida, ambushed Cameron on the issue of ‘bias’. He had spent two years and considerable sums of money going through tribunals so that his child could be educated in mainstream education. But as Bartley himself goes on to say: 'this, at the end of the day, is a question of both resourcing and culture. Either we are for inclusion or we aren't. To include children with special needs in mainstream schools takes commitment and a lot of work.' It’s not (and here I depart from Bartley’s argument) about insisting on a “bias” either one way or the other. It’s about making sure the resources are in place to make sure that children are educated in the right environment, and given enough support to ensure they thrive.

My own experience comes from putting two children into the education system in Scotland. Euan was originally sent to our local primary school, chiefly because he was diagnosed too late to be given a place in a special school. His primary school did everything they could to accommodate him; his classmates, encouraged by his teacher, were hugely supportive of him even though he must have deafened them at times with his singing. But it became clear as the year went on that mainstream primary school was the wrong place for him. On the other hand, when Adam went to school two years later we fought a bitter battle against the education department’s recommendation to send him to a different special school because we felt he could cope in a mainstream primary school if he had the right support. And, so far, he has. So I have experience of arguing the case on both sides.

The problem with insisting on ‘bias’ towards mainstream education is that it implicitly relegates special education to the second division. For this reason I vehemently reject the language that describes special schools as ‘segregation’ and marks children who attend them as ‘written off’. If this is the case, then the answer is to make the education in those schools better, not to shoe-horn children who may be contented and thriving in special education into mainstream classrooms where they may end up being confused, neglected and bullied. Someone I know who works in a mainstream school recently commented on a disruptive child: ‘autism doesn’t begin to describe it.’ Actually it’s more likely that the opposite is true: in many cases autism only begins to describe a child’s condition. The full picture can be a mosaic of subtle disabilities that may need the attention of half a dozen specialists. Some children will thrive in mainstream if they are given adequate support, but sometimes we should accept that it’s too much to ask. Euan is now in a class of four children with two specialist teachers, a level of attention that a mainstream setting cannot possibly provide. There is a sensory room where he goes when he becomes overstimulated and a constant stream of therapists coming and going – again, not services we can reasonably expect to install in every primary school.

On the other hand, where a child is able to cope with the mainstream curriculum, it should be encouraged. Inclusion does have benefits for the whole class and sends out good signals about our attitude as a society to disabled people. But that goodwill is entirely worthless unless it is backed up by practical support. Unfortunately, the Tories’ cuts agenda means that classroom assistants are being laid off and services that might help disabled children, such as specialist after-school care, are increasingly thin on the ground. So more children go into the special school system who don’t belong there, to the detriment of everybody – mainstream education, special education and, worst of all, the child themselves.

The Tories’ answer of ‘promoting choice’ is a distraction from what really matters, which is making sure that children are given the right education in the right setting. That means providing classroom assistance where children are being included in mainstream, and ensuring special schools are adequately resourced rather than tainted with the language of segregation. It means doing that unfashionable thing: investing money in public services. Instead we have the latest alarming development, being pioneered in Lincolnshire, of inviting all schools, including special schools, to become privately run academies. I can’t begin to think how, or why, anybody would run a special school for profit. In fact, if anyone can convince me that Railtrack is a good business model for the education of vulnerable children, I’ll eat a train.

The myth of parental choice is that it is empowering rather than restrictive. It lands parents with the burden of securing a good education when it should fall on the state. It implies that some schools will always be worse than others, and that if your children end up in a rotten establishment it’s your own fault for not choosing wisely. Yet it’s worthless to offer people more choice if you simultaneously impoverish the choices on offer, as the government is now doing. And the reality is that parents who want to challenge the system will have less choice, not more, because of another cost-cutting measure: the withdrawal of legal aid support for education tribunals. Families who find themselves in Jonathan Bartley’s position will no longer have the means to fight the decisions the state has made about their child’s education. The solution is not more choice, but better options. If 38 degrees draft a petition on those lines, I’ll be the first to sign.

Beware the grief farmers

At the risk of raking over old ground, and fairly morbid old ground at that, I wanted to revisit the subject of grief and autism. Firstly, because it was the catalyst for an intense and fascinating discussion a while ago on the Facebook page hosted by The Thinking Person's Guide to Autism. Secondly, because of some events I'd experienced at close quarters (though I wasn't directly involved) in which real, raw, agonising grief was a factor. And thirdly, because the concept is still mixed up with feelings of guilt, shame, and a sense that it is somehow the "wrong thing to feel".

The most common objection to grieving an autism diagnosis is that grief should be reserved for an actual death. Therefore parents who grieve for an autistic child are treating them as if they are dead. This will become a source of tension and resentment when the child gets older. I'd begin addressing this point by directing people towards Jim Sinclair's essay, Don't Mourn For Us, in which Sinclair (an autistic man who was non-verbal for most of his childhood) sanctions the grief response, on the condition that people understand that what they are really grieving is their own dreams and aspirations. They mourn a child who never actually existed. If it helps you to realise this, and accept that the child who was born is fundamentally different from the child you imagined, grief is an acceptable mediator.

I've made the point before that grief is a healing process: it allows people come to terms with overwhelming and irreversible setbacks in their lives. It is often confused with misery and self-pity when its true purpose is to overcome them. On the other hand, I have had it brought into sharp focus lately that the grief felt for a child who was never born is different in nature from the grief that accompanies actual death. Recently I read a heartbreaking, unflinchingly honest memoir by the Dutch novelist Adri van der Heijden about his son Tonio, who was killed in a cycling accident in Amsterdam last year. At about the same time, somebody I know in real life lost a close relative in similar circumstances. I wouldn't try to compare my own feelings with what those people must have gone through: the bewildering sense of random injustice, the raw shock and devastation, the evaporation of hope, which is all the more intense when a young person dies. At the same time, I reject the suggestion that other people's grief can somehow console me or diminish my own. The refrain that "other people have it worse" is invoked too cheaply, too often.

Grief is a healing process, but it has to be worked through. This is the other reason why I would argue it is not misplaced in the case of autism. The alternative is to be locked in a state of unresolved grief. There are, sadly, organisations out there which depend on parents being in this state. They want people to resist, angrily and vociferously, the idea that autism is an indelible element of their child's make-up. They want them to take up cudgels and campaign to "get their child back". They will offer them all manner of snake-oil remedies and false hopes of a "cure". And they will charge a hefty premium for spurious treatments, many of which are no better than witch doctors' potions. I think of them as the grief farmers, harvesting the misery of others for their own gain. They will play on the guilt that repressed grief engenders, telling parents that if they are not prepared to sacrifice everything they own for their children, they are betraying them (why do unproven treatments, as an aside, cost so much more than medically approved ones?). All of this misses the whole point that Jim Sinclair eloquently puts forward - that you cannot "reclaim" a child who never existed in the first place. You can give them therapy, acceptance and love, you can respect their autism rather than abhorring it, and they will have a chance to thrive. And you are much better placed as a parent to offer these things once you have worked through your grief. That's why I'll go on arguing that it's OK to grieve, because to deny grief is far more damaging.

A minor milestone

The other night I had a conversation with Adam that blew my socks off. Here’s how it went.

‘Hello Adam.’

‘Hello Dad.’

‘Is mummy reading you a story?’

‘Yes.’

‘Which book is she reading?’

‘This one, it’s this one.’

‘Adam, I can’t see it. You have to tell me its name. What’s it called?’

‘The Snail and the Whale.’

It went on a bit longer, but you get the idea. What made it so noteworthy is that it’s the first time I’ve managed to talk to either of my children on the phone. Despite a few conceptual struggles – I can imagine Adam’s concentrated face as he holds the book up to the phone, not understanding that my voice and my eyes are four miles apart – he came through it pretty well. Adam is almost six and Euan is eight, so I’ve been looking forward to this moment far longer than most parents (some of whom struggle to get their children off the phone at this age), and perhaps it’s a little bit more special for that.

Cause, consequence

Adam comes down for breakfast, smiling and bright as a button. He remembers something in his bedroom and dashes back up the stairs. Half a minute later I find him on the floor, distraught, face red and eyes swollen with tears.

I ask him what’s wrong. He points to a mug half-filled with water on the floor. “I didn’t drink my water.” Every night before he goes to sleep Adam drinks a mug of water in bed. It’s the last phase in a well-established night routine. Last night he must have been too tired to drink it, so it sat on the floor all night and when he woke up he must have knocked it over. Half the water is in the mug and the other half is seeping into the carpet in a neat ring.

“Do you want to drink your water, Adam?”

“Nooo! It needs to fill up!”

I go downstairs, fill the mug to the brim and tell him to come down and drink it.

“No! I can’t!” This is his standard response when he doesn’t know what to do. So I take the mug back up and put it on the radiator. This is no good either. He picks it up and puts it on the floor, on the exact spot beside his bed where it was before.

“Do you want to drink it now, Adam?”

“No,” he says and skips down the stairs to resume breakfast. The mug sits there until he’s left for school.

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A few weeks earlier we’re in the Ikea cafe, having meatballs and chips for lunch. It’s going well until Magteld filches one of the chips from my plate and pops it in her mouth. Euan is incensed. “You have to put the chip back!” he screams. She puts one of her own chips on my plate. But substituting a different chip isn’t what he means. He reaches into her mouth and tries to excavate the one that’s disappeared down her throat. No amount of explaining will convince him it can’t be done. He won’t give up until the plates are cleared and we’ve moved on from the table.

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We all remember those incidents when a favourite toy was damaged beyond repair and we still took it to our parents to fix, but these two incidents magnify that desire to undo mistakes to the point of intransigence. Adam didn’t want the water: he just wanted things to be put right. Euan was enraged by his mum’s refusal to undigest a chip. Do autistic children have more trouble than others understanding that sometimes there’s no going back, that not all loose threads can be re-ravelled?

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.