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Monthly Archives: May 2014

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I have been quiet for a while, immersing myself in keeping the household running, and everyone on an even keel while they sit exams. We are about half way through now and so far no one has missed breakfast, and no one has run screaming out of an exam hall. So that’s a success in my book.

Most of my (at home) job is reactive at the moment: I sit around being available for the next person who needs help with revision, or to go on a walk, or just to be distracted for a bit. We have watched lots of films (Julie) and documentaries (Duncan) and a lot of very silly sitcoms (everyone). I have explained calculus in words of one syllable, learnt the German word for mobile phone and copied out quotes from Lord of the Flies.

Meanwhile I have been having a battery of medical tests. How can so many tests involve fasting? It is cruel and unnatural. But the results of these tests are that I am in rude good health. Any pain I experience now is either imaginary or cannot be explained by current medical science. How charming to be told that lots of women of my age report similar pain – no hurry to try and find out what the problem is then. But the main thing is, I’m not going to die from it.

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This week I am not going to talk about myself but about my friends Sue and Paul and their daughter Eliza (obviously, not their real names). And for once I’m going to post this simultaneously on both my blogs because I know different people read them.

Eliza, a couple of years younger than my daughter Julie, has her father’s height and her mother’s dark good looks, likes films and train rides, and is also nonverbal and severely autistic. In parenting terms, this means that Sue and Paul have been dealt quite a difficult hand, but they have accepted this challenge and developed their own ways of managing her condition. And the remarkable thing is, that though their life is necessarily different because of Eliza’s autism, Sue and Paul don’t let this define them. They are a joy to visit, very attentive to guests, funny, observant and generous. Paul still manages to work outside the home, they live in a wonderful (if anarchic) old farmhouse, and they still make time for Eliza’s younger brother. And they have often been extremely kind to my daughter Julie, going out of their way to help her see that there is a good life to be had out there beyond her own immediate troubles.

Julie and Eliza were thrown together at school. Our local authority, lacking any specialist provision for autistic children, arranged for Eliza to attend mainstream school, where an entire team of adults was employed solely to supervise her. In practice Eliza, like Julie, was mostly unable to attend mainstream classes, and so was largely confined to The Centre, a tiny (and cramped) in-school unit, catering for all ages and disabilities. Some of Julie’s friends were registered blind, some were in wheelchairs, one had cancer, some had learning disabilities, and Eliza had autism.

Eliza might not speak very much, but the girls struck up a quirky sort of friendship. After so much adult supervision, Eliza clearly preferred the company of someone her own age, and revealed an unexpected sense of humour. It was a natural step for us to start visiting her at home, where I would enjoy a cup of tea with Sue while the girls bounced on the trampoline together, Eliza shrieking with pleasure.

The story of how Eliza came to leave school and end up out of education altogether is a story in itself, but all I will say here is that Eliza developed epilepsy, and didn’t tolerate the drugs given to control her seizures very well. It was too much for the school: she was sent home. Sue and Paul coped, and educated Eliza as best they could themselves – because after all what else could they do?

But the physical illnesses meant regular trips to hospitals, and trips to hospitals with autistic children often entail some friction. Sue phoned me out of the blue last week, desperate: Eliza had been taken ill, they were at the local hospital, but Eliza, distressed by the wait, the lights, the noises and her assessment, was trying to leave, and the staff wanted to have her sectioned. This is the English term for being detained under the Mental Health Act. She phoned me because she guessed (rightly) that I had some acquaintance with this process. A psychiatric assessment team had been called, and they would have the power to detain Eliza, probably in a mental hospital, and give her treatment against her will (one could guess this would involve sedation).

I have some acquaintance with the Mental Health Act, but not much that was relevant to Sue. For someone like Julie it is better to avoid sectioning if you can: once you have been detained involuntarily, you can then be legally discriminated against for the rest of your life. We have always avoided the curse of sectioning so far by simply consenting to treatment. When Julie was Eliza’s age (underage) we consented for her. You can do this with a clear conscience of course if you already think this treatment is in the best interests of your child.

It was only when I hastily looked up the Mental Health Act for Sue following her phone call that I even realised that it applied to people like Eliza. Eliza is not mentally ill (as far as I know), but she could be categorised as having a mental disorder. If you have a learning disability, you can be sectioned if your disability is “associated with abnormally aggressive or seriously irresponsible conduct”. I feel ashamed not to have realised this, despite following Sara Ryan’s blog, which last year described her son going through exactly this process. This puts Sue in a very different situation from the one that I faced with Julie. My daughter was distressed and heading for mental hospital anyway: I could consent. But Sue’s daughter is autistic, she does not belong in a mental hospital. It is not in her best interests to be separated from her family. And I did not dare tell Sue that once in mental hospital, Eliza’s sedation and restraint would be almost inevitable. After our experience of local mental hospitals, I cannot see what alternatives they would have, when faced with the arrival of a traumatised and highly distressed Eliza on a Friday night.

Now this story does have a happy ending. To our great relief, common sense did prevail for Eliza. Although the regular hospital staff clearly felt out of their depth in dealing with her, once the psychiatric assessment team finally arrived (many excruciating hours later), they quickly recognised Eliza’s condition and rejected their request to have her sectioned. Their job was then to persuade the regular staff to attempt to treat her again, making allowances for her autism, and her high stress levels. How they managed to persuade them to do this must be one of their professional mysteries.

It is a nonsense and an abuse for us to threaten autistic people like Eliza and their families with sectioning because she does not conform to our rules of behaviour. We are not Victorians, and detention of autistic people is barbaric. We know a good deal now about how autistic people experience the world, the difficulties they have in adapting to it, and why they might behave in ways that we find inconvenient as a result. Tearing Eliza from her close and supportive family, and moving her to a new place with unfamiliar people would have been the worst of all possible decisions.

Thank goodness the psychiatric team agreed. But they should not have been faced with the decision. The Mental Health Act should not be available for use in these circumstances.

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“You will certainly go mad in that house alone, my dear. You will see visions. We have all got to exert ourselves a little to keep sane, and call things by the same names as other people call them by. To be sure, for younger sons and women who have no money, it is a sort of provision to go mad: they are taken care of then. But you must not run into that.”

The indefatigable Mrs Cadwallader in Middlemarch. I love the fact that for her sanity is obviously something you have to work at, and seems to boil down to having the right vocabulary! As if insanity was a matter of having an unfortunate dialect.

Recovery has not been as easy as I imagined, and has not always gone in the right direction. I have discovered once again that patience is not so much a virtue as a necessary life skill. Good books help: I am glad I saved Middlemarch to my middle age, when I needed something to get me through these interminable afternoons (and when I was old enough to understand it).

However things are improving and I am looking forward to getting back to normal.

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