To all the mums and dads of autistic children…

Recently I had a long and wonderful lunch with a dear and close friend. We go back many years, although we’ve only regained contact in the last 4 or 5. During our long years without seeing or hearing from each other – as I discovered when we met up for the first time after that period – my friend had been widowed in excruciating circumstances, and had also had 2 children. Her eldest child is towards the extreme end of the autistic spectrum: he has no language, and communication with him is a constant and formidable challenge.

This post is, in one sense, not about autism at all. In common with, I suspect, the vast majority of people, autism is something that I’ve heard of, have some rudimentary knowledge of, know is an increasingly common diagnosis, and which has been brought to my attention over the last few years mostly in the context of the long and fractious contention over autism’s alleged connection with the MMR vaccine. That particular dispute may, in the minds of just about everyone except some parents of autistic children, have now been finally resolved, but its genesis is too easily put down to parental gullibility; parents want to be able to blame something for their misfortune, and have therefore clutched with an almost pathetic desperation on an unscientific and unproven myth. Thus the narrative goes.

The reality, I think, is rather different. There is perhaps one small grain of truth in it though, and that’s contained in that word, desperation. And I have to say that if I’d had to go through what my friend has gone, and is going, through desperate is exactly what I’d bloody well be. What I probably wouldn’t be, and what she is in spades, is resilient, courageous, determined, tenacious, committed, resourceful, beautiful and inspiring. She’s also, on occasion, angry, despairing, lonely, isolated, fearful, and very, very, very tired.

Much of what she endures cannot be mitigated, cannot be diluted with support, or money, or anything else. She knows that. But she also knows that many of the challenges she faces have nothing intrinsically to do with autism at all, just like this post. They are the thoughtless, careless consequences of unimaginative, under-resourced, ill-trained staff who simply don’t understand how difficult it is to cope with an autistic boy in his mid-teens, and who, doubtless unwittingly, make an already almost unbearable situation maddeningly worse.

Autism is characterised by, amongst so many other things, the fierce need for predictability. So to be phoned up to be told that a new carer is going to accompany her son to his special school tomorrow – someone he doesn’t know, won’t recognise, won’t be able to communicate with – is an unbelievably disruptive and aggravating experience. It requires, yet again, an explanation of the blindingly obvious to an agency that should not require such an explanation. It takes yet more energy. Yet more frustration. Yet more anger.

When her son was approaching school age, my friend had to spend months and years fighting for adequate provision. And then she had to do it all over again when he came to secondary school age. And when he reaches 19 and he can no longer go to his secondary school? Who knows.

But this constant fighting, constant anxiety, constant avoiding or negotiating of often unnecessary obstacles, is only a tiny part of the challenge she faces. The big, almost inexpressible, majority of that challenge is existential. It’s magnified in her case by the loneliness and loss that comes from being widowed. One thing she really doesn’t have time, or energy, for is to start on the intricate dance of meeting someone, of romance, of all that jazz. For sure that magnifies, but it doesn’t create the angst of being the parent to an autistic child. That comes from the tragedy of the condition’s imprisonment of one’s child; from its intractable and never-ending nature; from the pain of never being able to enter into one’s child’s world, or ever really understand what his world is like; from the anxiety of suddenly being the subject of unprovoked, hormone-fuelled assault.

I simply can’t adequately express my admiration for her fortitude, her courage, her unquenchable sense of humour, her seemingly bottomless well of resourcefulness and energy. And I can never fully appreciate her loneliness and her profound and ever-present – if always hidden – sadness.

She’s not alone, of course. And so this post is one small attempt to express something on behalf of all the mums and dads who daily have to face the challenge of their autistic children. It’s not all gloom, and there’s joy too. But most of us simply don’t have a clue. It’s time we got one. It’s time we campaigned for better services. It’s time we stood up for autism.


Clarkson’s a prize prat, but Ofcom’s come to the right decision

On November 30th last year, thousands of public sector workers went on a one-day strike to protest about reductions in their pension entitlements, and the increasing contributions they are having to make to earn those reduced benefits. This post isn’t about the rights and wrongs of the pensions arguments, but rather about Jeremy Clarkson’s contribution to The One Show on that day. In parenthesis one might note that Clarkson’s most damaging contribution consisted not in what he said, but rather that pretty much the only thing that was talked about on the day, or that anyone can now remember about it, was Jeremy Clarkson rather than public sector pensions. But let that pass.

The furore was all about Mr Clarkson’s suggestion that the strikers should be “taken out and shot in front of their families”. Baldly stated like that, one might be tempted to think that this was indeed a disgraceful comment, and that the perpetrator deserves all the opprobrium and official sanctioning that the regulator, Ofcom, can muster. Not so. Clarkson’s joke wasn’t about the public sector pension strike at all, but rather about the BBC’s often rather onerous requirement to be “balanced”. He’d talked about how wonderful the strike had been by freeing up central London, and then with ponderous irony went on to say something that was supposed to provide a counterweight to the support for the strike implied by that initial enthusiasm – and taking out the strikers and shooting them, with the gratuitous addition of doing it in front of their families, was intended to be as strong an antidote as it was possible to provide.

This tells us a lot about Mr Clarkson’s sense of humour, about his lack of any sense of proportion, about his pretension to be an iconoclast, about his self-importance, and much else besides. Much of what it tells us reinforces the perception that Mr Clarkson is a most unpleasant man. But what it doesn’t do is suggest that Mr Clarkson was attempting to stir up or incite literal violence against the strikers, still less to indicate a serious intention to use a particular weapon, or to include an audience of relatives. It was ridiculous of Unison, the major striking union, to complain, to try and build the incident up into some sort of transgression against the strikers’ human rights. It was equally ridiculous that 31,000 automatons, largely I suspect the Twitter-inspired mob of rent-an-outrage activists, should be moved to moan to Ofcom about Jeremy Clarkson’s criminal tendencies.

It is, however, yet another example of two real tendencies. The first is to undergo a humour by-pass whenever anyone makes a joke which offends against the hearer’s political sympathies. And the second is the even more miserable tendency to seek redress for such offence at the court of the regulator, or even at the real courts. We see it time and again, whether it’s taking religious nutcases to court because, sprinkled amongst their other nonsensical outpourings is some spurious anti-gay tomfoolery, or whether it’s taking some frothing right-wing hack to the cleaners because they’ve been horrid about something or someone we hold dear. Tendencies which are particularly galling when displayed by those who happily make equally cruel or tasteless jokes in support of their own political perspectives, or who are immediately screaming about free speech when their own right to say anything they like is questioned by their political opponents.

It really is time we all grew up, and learnt what we should all have absorbed from our playground experience as kids: that bullies of all sorts love their notoriety, and hate to be ignored. So best to ignore them, don’t you think? And another thing. As Ofcom rightly pointed out, a joke is different from a real or literal intention. Something the courts might try and learn next time somebody tweets a joke about blowing up airports.

Welfare reform: the real iceberg

As the Welfare Reform Bill wends its way through parliament there’s been a lot of discussion, and indeed acrimonious debate, about many of the proposals that will impact on the level of benefit that numerous categories of claimant will receive in future. That’s right and proper because there are going to be, and already are, a lot of losers. Whether it’s the overall cap on benefit (most likely to affect claimants that live in the South East of England, or those with large families anywhere), or the increasing deductions for non-dependants (where the housing benefit recipient lives with a non-dependant who is working, and who is deemed to be making a contribution to the rent, whether or not they actually are, but that amount is deducted from the claimant’s HB anyway), or the “under-occupation” rules (where someone living in a property deemed larger than that which they need will only receive HB in respect of the size of property they “need” regardless of the rent on their actual property), or the sudden and radical discovery that anyone up to the age of 35 is really a child and can’t possibly need a home of their own – just in the arena of housing benefit alone, thousands of claimants will be worse off, and frequently substantially so. Add to that all the proposals for changes in incapacity benefit, unemployment benefit, and much more besides, it’s not perhaps surprising that this is where all the public disagreements are being played out. It’s certainly the area of political dispute, with Labour joining with vociferous bishops, and a few brave coalition refuseniks, to castigate the government in general and Iain Duncan-Smith in particular.

But in truth, none of these issues will wreak the havoc that will flow from another part of the reform bill – and it’s a part that everyone across the political spectrum agrees with and supports. That is the business of direct payments. At the moment the vast majority of tenants in social housing, be their landlord a housing association or a local authority, never see the housing benefit that pays their rent. It’s paid straight from the benefits system to the landlord concerned. It’s this “invisibility” of the transactions around rent for all tenants on full housing benefit (around 60% for most social landlords, and a lot higher for some in particularly deprived areas) that worries the government. To all intents and purposes for those tenants, argues the government, their housing is free. They don’t pay rent at all. The government believes that this is both an affront to “hard-working families” with mortgages or private landlords to pay and, more profoundly, a powerful incentive to remain on benefit rather than to work. The government believes that this very process is corrupting, removing independence and self-reliance from the lives of millions of citizens to their detriment, and to the detriment of society at large. Not to mention the eye-watering cost, of course. And so the government is proposing to administer a short, sharp shock of realism into these claimants’ cosy and dependent lives. They are forthwith going to join the rest of society in having to budget, to make choices between competing financial liabilities, and to get off their butts and work.

This is a powerful narrative. Who is going to say, “No, we should treat poor people like children, and do all their financial thinking for them. They can’t possibly have the intellectual capacity to deal with such decisions, to trade off paying the rent against the electricity bill, the shopping against a nice holiday in Tenerife. And in any case, they can’t be trusted – if you give them the rent money in their hands, they’ll spend it on drink, drugs or both.” Well, no-one is. Which is why there is no political or moral counter-pressure on this aspect of the government’s proposals.

Yet this seemingly unanswerable moral case for treating benefit claimants with the same respect as anyone else in society brings with it formidable and potentially chaotic consequences. The key plank is that receiving benefit should be just like receiving a wage. And indeed that in many cases benefit is simply a supplement to a wage. As claimants move into part-time work, they will receive some of their money from their employer, and some from the state. As they work more, or in better-paid employment, the supplements will fall seamlessly away. If they move in the opposite direction, benefits will equally seamlessly take up some part at least of the slack. But this can only work if benefits, including housing benefits, are administered centrally, and with access to tax, council tax, and loads of other income and benefit, data. So it’s goodbye to local authority revenue and benefits departments where claimants could go in person, and where staff might actually know them. Of course, such a complex mechanism will need a suitably complex IT system to support it, and indeed one is currently under construction. We needn’t worry about that, because the track record of large-scale IT procurements in the public sector is so wonderful. Look at the NHS patient records system. At the inland revenue system. Look at the new emergency services control centres. See? Oh.

We’re making direct payments to claimants because it’s wrong to treat them like children or, to put it another way, because they should no longer be able to dodge the responsibilities of life. They need to develop budgeting skills like the rest of us. Except that budgeting skills are required in inverse proportion to the amount of money you’ve got to budget with. It is breathtakingly arrogant for millionaire cabinet ministers to cajole the very poorest in society into obtaining budgeting skills that millionaires don’t need; and millionaires have accountants to provide such skills on their behalves anyway.

And for very many housing benefit claimants at the moment, life is already an intolerable struggle. They are having to juggle so many things, and it’s no argument to say that they have brought some of those things on themselves. Many have drug or alcohol problems to contend with. Many are victims of domestic violence. Many have little or no parenting skills because they themselves were never effectively parented. Many have genuine and debilitating health, or mental health, problems. Many struggle with language. Many have never had as much cash as a month’s rent in their hands in their entire lives before. Many haven’t got, and can’t get, bank accounts. Many are already living in fear of loan sharks or pay-day loan exploiters.

But at the moment there is one thing they often don’t have to worry about. Keeping a roof over their heads, and over their children’s heads. Now, in the name of a pious and seemingly so right and reasonable desire to increase their independence, the government proposes to wrest even that small certainty from their lives.