A conversation with Robert and Marian, parents of Charles

Charles has Asperger syndrome, but was misdiagnosed with schizophrenia as a young man. He was not included in this conversation with the NAS because his parents were worried about the degree of distress it might cause him.

Robert: My son was born over 50 years ago. He was an unusual, even odd, pupil but I and worse, his teachers, failed to understand his disability. As a young man he was thought to have schizophrenia and was admitted to the mental hospital.

Robert: When discharged he was sent to a home for recovering mentally ill persons, but nothing new was tried to help him. He stayed there four more years. Then his disability, autism, was recognised as was his need for permanent support in the community. He remained three more years, because they couldn’t find anywhere else to put him, and then he went to a series of other homes.

Marian: They didn’t want to keep him in the homes – he was a problem to them.

Robert: Unfortunately, because of his fifteen years of dependency his needs had grown. That was thirteen years ago. With my help he obtained the new flat where he now lives, but still depends on state finance. His autistic disability is the same as ever but his physical health has deteriorated and is very poor for a man of his age. He needs help to get out and about or to fetch and carry. We are finding it harder to manage all his difficulties.

Charles gets ten hours a week support from The National Autistic Society (NAS), and about six more from an outside agency.

Robert: I am afraid that in a few years’ time he will be unable to continue living alone in his flat and he will need trained and understanding staff nearer to hand all the time and will have to move.

Marian: One of Charles’s problems is loneliness. He goes out less and less, because he’s self-conscious about how he looks. He’s a mess. His hair is untidy, his trousers hang below his tummy – and it’s now a very large tummy. He shambles along. People in his area know him and he’s become very self-conscious.

Charles rings up his mum every time he needs anything – both of Charles’s parents have done their best with no support or guidance.

Marian: It’s not easy when you meet the non-NAS staff – we call them the 'generic' staff. They don’t understand autism. We had to tell them how one of the female staff should dress. They’d come in the most ridiculous outfits.

Robert: When he was at the home for the recovering mentally ill, there was a girl once who wanted a relationship with Charles. But he couldn’t reciprocate. He rang his mother and asked her to take the girl away. He got angry and she was upset. But she was asking things of Charles that he couldn’t give, emotionally.

Marian: He’s frightened of sexuality, I think. He gets distressed when women approach him, because he can’t handle it. So he rings his parents and asks us to rescue him. The women get upset, which ends up in case conferences where his private life is discussed.

Charles has several sisters. They would all like to help, but they all have families and professional lives. His parents worry about what will happen when they are unable to continue providing the personal support which falls outside the boundaries provided by professional carers.

Marian: We have arranged a trust fund for when we die and his sisters are going to manage that.

Robert: I want there to be somebody who can go and see him, who can say to him, 'You need to get some new clothes. You need to get out from time to time.' I want him to be able to stand on his own two feet. I said that to him once and it made him angry – it hurt his feelings.

Marian: He’s very bad at organising things and the only one who can go in and throw things away is me. The staff don’t feel they can. How much can an NAS person do? They go five mornings a week, but if he gets an appointment in the afternoon, they’re pushed.

Robert: The other thing I’d like is to get him help with the form filling. And he needs help with some sort of money control.

Having had such a traumatic time when diagnosed with schizophrenia, Charles no longer trusts doctors. Before retirement, Robert was a GP.

Robert: My experience has been when speaking to one of his GPs about my son, the other doctor, with less knowledge, slips into the professional mode. What they’re saying is, 'I’m the doctor, I’m in charge.' They don’t listen to my opinions or use my knowledge – they see me as unimportant.

Marian: Charles has had a lot of drugs and ECT [electroconvulsive therapy]. Now he manages his own medication. But it contributes to his obesity.

Long-term health outcomes are a major source of worry.

Robert: His breathing is very poor – he’s got COPD [chronic obstructive pulmonary disease]. He’s been admitted to hospital with it. He eats too much. He’ll need help, and who’s going to help him when he gets older? There’s very little in this town. I think he’s aiming himself at diabetes and blood pressure problems. And I don’t think he’d mention it to anyone if he gets cataracts.

Marian: I cut his toenails. Who else is going to do that? Who even talks about things like that?

Robert: He’s pretty bleak about the future but we feel he has always tried.

Marian: He’s worried about his health. He’s quite frightened about his lungs – of going into hospital again – and he’s quite likely to.

Charles has quarterly care assessments, attended by his social workers, NAS staff, Charles himself and his parents. They are not attended by his psychiatrist, GP or the other care agency. Charles has received help from a speech therapist. She was not invited to attend care assessments and although Charles believed this was the most useful help he received, it was discontinued.

Robert: There’s a compartmentalisation of expertise. The mental health hospital did mental – they didn’t do physical, even for the people in its care. And it should. We would like to see continuity in the services – they don’t seem to be aware of each other. His support and quality of life has gone up since the NAS got involved. But my worry is that he’ll lose that if he goes into the old folk’s network. In my son’s old age, he’s not going to be able to support himself. He’s in the arms of the welfare state.

Marian: The awful thing is, in a way, that we’ve begun to accept that there isn’t really a future. Nothing’s co-ordinated. There’s no 'whole' to it.

Robert: You can see how concerned we are about the things we supply that the services do not. Who is going to do that when we cannot?