Living with Asperger’s

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

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
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.

Relationship woes

Problems reported by partners of people with Asperger’s
syndrome:

Selfishness

Unpredictable outbursts of anger

Lack of executive control over life

Irrational blame of others

Alcohol abuse

Sexual problems

Lack of empathy

Problems in socialising

Children overcontrolled and emotionally abused

What is Asperger’s?

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.

Maxine Aston is a Relate counsellor, trainer, and is the
author of The Other Half of Aspergers Syndrome, National Austic
Society, 2001. Ruth Forrester is head of children’s services at
Powys County Council with responsibility for special educational
needs.

References

¹ Tony Attwood, Asperger’s Syndrome, Jessica
Kingsley, 1998

² J Barnard, V Harvey, D Potter, A Prior, Ignored or
Ineligible, National Autistic Society, 2001

Websites:

National Autistic Society at www.nas.org.uk