For this relief much thanks

Last week Euan had his first night in respite care. It was an odd experience. Unlike other eight-year-olds he’s not really set up for sleepovers, and our nearest family is 300 miles away, so we could count the number of nights we’ve been separated from him on two hands. Not always easy when your child rarely gets to sleep before 10 and turns every mealtime into an impromptu karaoke session.

So we were deeply grateful when, after a year of quiet lobbying, the social work department (yes, we’re known to social services. Too right we are) managed to find a place at a respite home a few miles away. At the same time, we were anxious about the idea of him going away and being cared for by strangers. Professional, dedicated strangers, but even so. Euan’s communication is slowly improving, but he lacks the ability to say what he’s thinking or how he’s feeling. He can tell you what he wants or what he doesn’t like, but he still can’t say why. And if something is seriously bothering him, he dissolves into a fierce tantrum. So asking anybody else to look after him means investing an enormous amount of trust.

We had a tour of the facility a few weeks ago. It’s a child’s paradise - soft play area, swimming pool, TV room and sensory garden (which means things that make noises in the wind or have knobbly surfaces that you can run your fingers over). And four basic bedrooms: this was the point that I realised he really was going to be spending nights in here. Eventually it’ll be whole weekends. Weekends when we can pretend to be a bit more like an ordinary family, with only one autistic child who can enjoy a couple of days out of the shadow of his noisier older brother. Ah, bliss.

We went to pick up Euan on Friday morning, after his first night away. As soon as he saw us, he pulled his shoes on and made a dash for the door. You might have thought he was desperate to get away. But this is just how Euan divides his life: home is home, school is school and respite is respite. There can be absolutely no seepage from one into the other. He might make a good secret agent.

What I do know is that all of us felt refreshed for the change of routine. In the light of this, I was interested to read recently that respite care often reduces the need for other forms of intervention. It’s now acknowledged that the stress of raising autistic children puts a strain on the mental health of the parents and makes the children more anxious, which in turn increases the demand on the health service. In the worst situations, the child or the parents, or both, end up in institutions. So it’s disappointing to read that many local authorities are shutting down or restricting respite services as part of the ongoing budget cuts. It would be a shame if short-sighted politicians and their accountants took the view that respite care is some kind of dispensable luxury when for many families it’s the difference between coping and breaking down. And that, ultimately, is a more costly business in every sense.

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?