A lesson in brevity

This month's homework is to write a summary of P's disabilities and their effect on his life and mine. It's an easy task, I've already filled in enough diagnostic forms, special needs statementing reports and assessment of needs forms, but this time the problem is the intended audience.

Last month I took my ex-husband, Jay to court, to force him to agree to a financial settlement which didn't involve him getting everything. Still, that's a better proposition to the one he originally planned when we were newly married. The news had been full of a trial involving a man who murdered his wife and hid the body for years. When she was finally discovered he got a suspended sentence. Jay saw the possibilities in this and announced it was more sensible to murder me, keep the house and at worse spend a few years in an open prison nestling in the English countryside, rather than divorce me and lose half of his house. So that's what he would do if it ever came to divorce. It came out of the blue, it wasn't a threat, just a statement of fact and apart from my general grumpiness that he refused to live with me for the first year, I had never given him an indication that he needed to divorce me. But by that time, I had realised that I was married to a very unique man.

It started within 24 hours of our wedding. He wouldn't book a honeymoon. It seems such a minor little thing in itself, but that was the first clue I had to his real nature. Instead, he came to live in my flat for a week, sitting inert and unresponsive in a corner. I decided that he was annoyed that he had missed out on a honeymoon, so I booked all I could afford, four days in a hotel way out in the suburbs of Paris. The hotel was basic and functional but we spent our days in the city centre, relying on Jay's amazing ability to negotiate the streets back to the hotel. The route led through a red light district, which would be wakening up as we walked back to the hotel in the dusk. I probably pointed out the crudeness and directness of the adverts on the club windows.

One evening we discovered a small cafe tucked in a side street, with strong wine and a relaxed service, and came back to the hotel quite late. The meal had been candlelit, we had drunk a carafe of wine, we were newly married and I linked arms with him as we walked back.

Suddenly he dropped my arm and hesitated, then bent down to fiddle with his perfectly tied shoes. I waited for him and he told me to go on ahead of him, he'd catch me up. I felt stupid, the wine had made me confused, I wasn't sure of the direction of the hotel and I wasn't even certain of its name. I waited for him but he remained bent down, urging me to go on. I looked round and found we were in the red-light district, the clubs were beginning to open, the lights were going on and black-suited doormen were half-heartedly attracting the attention of passers-by. I felt cold and scared but slight ashamed that I didn't know where the hotel was. He stood up and waited, I tried to link his arm again and rekindle the previous mood but he pushed me away, 'I'll follow you on and meet you at the hotel'. I looked round, conscious of the doormen watching as another couple had an argument about his porn needs. But we weren't like that, we were just married, I was attractive and loving and he didn't need anyone else. I felt so ashamed and the cool air stung my burning face as I tried to wipe away the tears that were welling in my eyes. He finally agreed to carry on, but I had to walk ahead of him 'because I like to look at you walking ahead of me'. I walked on slowly, feeling for his presence behind me.

We walked past a sex club, a group of doormen surrounded him with offers of cheap sex but I knew that he wasn't interested and would excuse himself from the misunderstanding and run to catch up with me, muttering at their stupidity for thinking he was wanting that sort of thing. But he didn't. The doormen, surprised at his interest, led him quietly into the building as he looked expectant and relieved. I was completely sober by then, aware that I didn't know how to go back to the hotel and ashamed by his indifference. I sank into survival mode and ran back, shouting 'he's my husband, leave him alone, he's with me!' my face raw with embarrassment and shame. The doormen, unsure of the play that was unfolding on their doorstep and clearly sorry for this silly, english-woman, stood back and left him to me. I grabbed his arm, hung tightly to it and marched back to the hotel, only relaxing my grip as we reached the reception desk.

We never spoke about the incident, it was put away but never resolved. I was so ashamed and humiliated that I put it from my mind, denying it for years. He rarely spoke anyway, reserving all his conversations to brief recounts of basic facts or snapping a criticism at me.

Six weeks later he had gone back home to his mother's house. There was no break-up, no argument, it was just that his work was too far away and he didn't want me to look for a job closer to my home. He vaguely offered to look for a job for me at his place of work. In the meantime, he reiterated that I would be unfaithful if I socialised with my male colleagues, so I settled into a solitary existence. Within five months I had handed in my notice at work, packed my bags and told Jay I was coming home to be with him. He patiently explained that his mother wouldn't let me live in his home, there were no flats to rent in his big vibrant city and he couldn't buy a house because I wouldn't like his choice. 'You can go back and live with your parents', he argued, 'they love you, they thought they'd lost you when we got married, well now they can have you back, I'll visit you at weekends.' And so started the second, equally unsatisfactory, stage of our marriage.

But back to the present, Jay's problem is that he has decided that our son, P isn't disabled. Ok, he has a few quirks like his dad, but he isn't disabled. Whilst I agree with Jay's former statement, I have to accept that a psychiatrist has diagnosed those quirks as Asperger's Syndrome and mild ADHD. I sought the diagnosis, to get P the help he needed, but I still refused to believe it, arguing that P can just snap out of his behaviour when he pleases, it's just that he doesn't want to yet. Besides, as time goes on, he becomes increasingly like his father, who has a good job and a healthy salary. Ok, when I finally got Jay to go for help, he was diagnosed with a small selection of personality disorders, but Jay always argued that it never happened with such determination, anger and force that even I began to doubt it.

So here we are with a son so disabled that he cannot even settle in a special school, can't change his clothes and is abusive to anyone who challenges him. I spend my days organising his future, apologising for his present and shaking my head with disbelief over his past. His father spends his days stewing over my laziness and refusal to work and ignores my pleas for a financial settlement. Hence the recent court case.

On the day, the judge listened with a slight impatience as Jay argued that his son wasn't disabled. She wrapped up his bleatings with a terse 'do you accept the psychiatrist's diagnosis?', then declared that since the government considered P disabled enough to require a full-time carer, Jay couldn't argue further. But Jay came back with comments about how our son had been different but certainly not a challenge when Jay lived with us. By that time, garrulous old me, desperate to please the judge who had agreed with me, asked her if she wanted further evidence of P's disability. I mean, just describing our typical day would be enough to convince anyone. She declined but suggested that I could provide it in a letter to Jay, since he was the one who needed convincing. Hence the homework.

Now I'm left with providing a summary of P's disability, without giving away any details of the lives we now live or without hinting at the amazing people our other children are turning into. Don't get me wrong, I don't want him to be part of my life, I'm fed up with his control and manipulation, but I accept that he has to know what P's problems are. It's the other children who don't want him to know anything about their lives and don't want him to take part in their future.

Dear Jay,
As you know, P has a diagnosis of Asperger's Syndrome, dyspraxia, dyslexia and dysgraphia. He also suffers from mild ADHD. You are aware he has shown obsessive-compulsive tendencies for the last twelve years. As you know, he attended three mainstream schools before the age of 6. When his third placement failed and I asked you to help me complain to the headmaster you de-registered him and told me to teach him at home.

His extremely poor hygiene standards continued after you left and he now stinks. He blames it on my refusal to buy him anti-perspirant, so he can make holes in the can or spray it at his brother's face. He has sensory issues, which mean that he has a limited and inappropriate wardrobe, which we have to shop for in all-night supermarkets. I still take his rubbish directly to the tip, to prevent him from foraging in the dustbins.

When you left he couldn't use a knife and fork, choosing to eat his mashed potatoes and gravy directly from his grubby fingers. I've since taught him to use a spoon for sloppy food. If his brother sits nearby then he throws the food at him and I have to pick mashed potato out of a rush-seated chair. That won't be a problem in the near future, as he is slowly taking our dining chairs apart. He removes one leg, balances on the other three and chews the free leg. If I challenge him then he argues that he is hungry and I won't feed him.

He has an addiction to fizzy drinks, which propel him into a sugar-induced adrenalin rush. During his last one, I had to jump in front of his sister to protect her. However, the security guards at the airport were alerted to his behaviour by his shouting and were already on the way to see what was going on.

Our last holiday was ruined by a five day tantrum and I spent one night awake, checking that he hadn't run off. He started threatening me when I was negotiating a side road on a blind bend, so I hit him. Still, that was better than the previous one, when we were threatened with eviction from a camp site because of his foul language, screamed across the slopes of Mount Snowdon.

His obsession with knives continued after you left and he now has an impressive collection to go with the BB guns and the baseball bats. He uses the BB guns to shoot at targets made from photographs of the management at his previous school. Fortunately, the guns wear out reasonably quickly. On a more positive note, his fascination with fire burnt out soon after he accidentally set fire to the dining room.

I have learned to live with his suicide attempts. His sister hasn't and still gets upset when he self-harms. She never really got over the day when she walked into his room and found him with a rope wrapped tightly around his neck.

In the interests of my personal safety, we have banned parties, even when he isn't in the house. The one exception, our daughter's 18th birthday, was followed and marred by a five week trail of destruction and abuse of me. My closest friend's husband was a bit shocked when I walked into their house and burst into tears. It's not quite polite for a visitor. Still, he did insist that she keep the door unlocked at all times, so I can just wander in and claim refuge when things get tough.

P has attended two specialist schools for communication disorders in the last four years. He wants to leave his current school because they challenge his unacceptable behaviour. He has very few qualifications, is abusive when things don't go his way and cannot accept authority. When I say he is abusive, I mean in the sort of way that you were. Don't you remember our daughter phoned 999 once when you were chasing me around the house, threatening to kill me? It was the policeman who described it as abuse and it was the domestic incident team who asked me to press charges against you but at the time I was still in love with the idea that I could cure you.

Our local social services argue that P does not meet their criteria, but refuse to tell me what their criteria are. I suspect it is because he has a high IQ. Our local mental health services once suggested that I lock up all the knives because he tried to strangle himself. When things were really bad last year, a psychiatrist offered me a prescription for Risparadol, which I never took. They have a six week waiting list for new referrals, which they feel more than makes up for the fact that they will not tackle Asperger's Syndrome. All our consultations seem to take place on the phone and centre around my obvious distress. I think they think that my distress is the cause of all our problems and can be switched off by a few patronising words by a mental health worker.

Once, when he was threatening to kill me, I contacted NHS Direct, thinking they might have a magic cure which my GP didn't know about. They did, it's called the Police, who come round, arrest the child and take him away. My friend uses them as a respite service when things get really crazy. With luck, they keep her son in the cells overnight and send him home in a police car the next day.

And in spite of all this, I love our son and it breaks my heart to see him like this. He, like you, has decided that I have let him down with a stupid list of silly little events which prove to him that I am an untrustworthy liar. Everyone who knows us well, and knows the amazing support I give him on a daily basis, is shocked to see how he views me and how he treats me.
Yours sincerely,
Mrs Asperger

No, too much information, how about-

Dear Jay,
As you know, P has a diagnosis of Asperger's Syndrome, dyspraxia, dyslexia and dysgraphia. He also has mild ADHD.

Details of these conditions, and how they impinge on his life can be found in any standard textbook on autistic spectrum disorders.

Yours sincerely,
Mrs Asperger

Well, at least it's a start.