Living with Asperger's

Community Care Magazine -
Issue: 11-17 July 2002
Specialist Articles - Page 38/39

The possibility of an adult with Asperger's syndrome should be considered when there is conflict and domestic violence in a family, say Counsellor Maxine Aston and children's services manager Ruth Forrester

The public and professionals are becoming more aware of the impact of Asperger's Syndrome on families. Asperger's is a subtle, almost paradoxical, disability which is four times more likely to be diagnosed in males. It was believed by some professionals that men with Asperger's do not marry, but this is not the case and the more able people do form relationships, marry and have children. They are often capable workers and are highly qualified but nevertheless have great difficulties in personal relationships.

Diagnosis is problematic because of disagreements about criteria, but also because of a convergence between "macho" male characteristics and many traits associated with Asperger's. There are obvious dangers in confusing the two. Research supported by the National Autistic Society into the intimate relationships of couples where one partner is affected by Asperger's shows that men with the condition tend to choose partners who are maternal, strong, and with nurturing qualities, often older than themselves. Women are attracted to men who appear to be kind, gentle and slightly immature, and who flatter with obsessive attention.

Although men with Asperger's can have relatively high status occupations, including engineers, computer specialists and university teachers, problems can arise when they are married. Attwood1 describes a spectrum of Asperger's behaviour, from the passive to the arrogant and aggressive, and it is likely to be the latter who perpetrate domestic violence. Also, the whole responsibility for the relationship rests with their partners, who report a feeling of "going mad", and who frequently become depressed and may take medication, yet are reluctant to separate because of concern about how the person with Asperger's will cope. Living with the condition is stressful for the family, particularly if both partners work. It might be less so in traditional families with role differentiation by gender and greater overt control of children.

Having a diagnosis can be helpful and whole family interventions can be developed to manage everyday life. Also, having Asperger's does not make a person abusive, but it can make them controlling. However, if the partner with Asperger's is in denial, he may try to deflect his problems on to his partner and the children, and there are anecdotal reports of stalking, intimidation, manipulation of children, and domestic violence. There is an added danger that in such situations men may appear to be calm, in control, and shocked to be accused of abusive behaviour when approached by the police or social workers. It is important to stress that many men with Asperger's do not harm their families, but some of the key features of Asperger's make it more difficult to address any such abuse.

Consequently, the syndrome presents challenges for service providers, because the psychodynamic model which underpins social work and mental health traditions does not help in understanding a disability which is organic. Also, there are still many misconceptions; for example, that autism is caused by poor parenting - although bad family experiences undoubtedly make problems worse.

Meanwhile, there are deficits in skills, training, and service provision. People with Asperger's are likely to present to mental health services, often through civil or criminal court action, and the condition is easily confused with psychosis or personality disorders. There has been criticism of the failure of psychiatry to learn about Asperger's, and although more progress has been made through the assessment of children by special educational needs services, what happens when people get older?

Any serious strategy to assist families must start with the principle of protecting children from significant harm, as well as the unacceptability of violence and intimidation. But what else could be done?

The National Autistic Society published Ignored or Ineligible, 2 which set out the parameters of an effective service. This emphasised collaborative planning between statutory partners, users, carers, children and voluntary organisations. Also, educational models of the management of children with Asperger's have been developed and could inform clinical practice and family counselling. In addition, families affected by the syndrome have a special insight and can tell us about their needs. They must also be part of the solution. Meanwhile, local routes for assessment, diagnosis and clinical support should be established so that GPs and psychiatrists routinely consider Asperger's and can refer people to specialists who can confidently diagnose and offer management strategies.

This service need not be medically-led and psychologists, carers of people with learning difficulties, and speech therapists have a significant contribution to make. There also needs to be a network of services available, from care management, family counselling and employment support, to help for partners and children as carers. Links between child and adolescent mental health services and adult mental health services are crucial. Then front-line domestic violence agencies, including the police, Women's Aid and the Children and Family Court Advisory and Support Service (Cafcass) need to build up their knowledge base, as should family lawyers. Currently, social work awareness of Asperger's syndrome is poor. There is some knowledge in teams working with learning difficulties but they are highly targeted and most people with the syndrome will not receive a service. Also, the identification of Asperger's is undermined by the focus of social work assessment in children's services on mothers rather than fathers.

Nevertheless, those in children's services should be able to screen, using the assessment framework, although the ability of people with the syndrome to camouflage their problems and of partners to protect them should never be underestimated. The taking of a full history is essential. Similarly, listening to children and partners is crucial, though direct accounts in the early stage of a relationship may be hard to obtain. Schools, health professionals and extended family members might also give clues about parental behaviour and its impact on children. Because of the relationship dynamics, legal intervention to protect the children (and the partner) might need to be undertaken at an early stage. Finally, practice managers should be trained so the possibility of Asperger's is considered during supervision sessions.

The danger of conflict also needs to be recognised. Anger, threats of violence and litigious complaints are features of the behaviour of some people with the syndrome. Intimidation of workers is a real possibility. To deal with threats to families or workers, clear and consistent messages need to be given that this behaviour is not acceptable, using the courts and the police to protect families and workers if necessary. Asperger's syndrome presents gender politics in families and between social workers and users at their crudest, and a key question is whether there are educational interventions which can influence adult behaviour in an intimate relationship. We would be interested to hear from any practitioner who has developed methods for working with children or adults with Asperger's who would like to contribute.

The condition was first described by Hans Asperger in 1943.

* There is a strong genetic link.

* It affects one in 250 people.

* It is an autistic spectrum disorder.

* The key diagnostic features are social relationships, communication and imagination.

* Special interests are often pursued obsessively.

* There is no cure. It can be managed through recognition, support, medication and structured counselling.