| |

Autism Helpline 0845 070 4004

Families: the impact of autism

Introduction

The Information Centre frequently gets requests from students who are researching the impact of autism on the family. It is the purpose of this information sheet to give a broad overview of the current picture drawn from published information. The information sheet may also be of interest to health and social care professionals working in the field.

The appearance of autism within a family always brings about its challenges. Indeed, for those families whose child appeared to be developing normally, it can be particularly difficult if the child suddenly goes through a period of regression and, for example, stops talking. However, there are also advantages to autism and a person with autism can display such traits as attention to detail, punctuality and a clear adherence to rules, all of which are attractive to employers. It must also be realised that autism, while a strongly genetic condition that is generally present from birth, can be diagnosed at any age. There will therefore be different issues that present themselves according to the age of the person diagnosed.

Reactions to diagnosis

Reaction to a diagnosis of autism varies very much from family to family. Nissenbaum, Tollefson and Reese (2002) studied the impact of diagnosis on families and professionals. Parents felt relief to be a benefit of having a diagnosis: they no longer feel that the problems they face are due to their lack of parenting skills and they have an explanation for themselves and others as to why their child exhibits unusual behaviours.

Parents may also react by crying; feel surprise, devastation or helplessness; and by wanting additional information about autism. However, it is acknowledged that the information they receive is not enough. The National Initiative for Autism: Screening and Assessment (NIASA) report (2003) stresses the need to provide more information and to involve families throughout the assessment process. For example, local parent groups, education and training for parents, carers and professionals and information about support services are important.

Some parents in the Nissenbaum, Tollefson and Reese (2002) study did not believe the diagnosis and some even became angry or questioned the professional's ability. Many were worried as to how other close relatives and friends would react to the diagnosis. Suspecting autism decreased the likelihood of shock. Many parents and professionals said family members went through a grieving process after hearing the diagnosis. Regardless of their reaction, families did not feel that a diagnosis of autism influenced their interactions with their child. Gray (2003) found that mothers, in particular, experienced considerable guilt and depression about their child's disability. The diagnosis also meant they experienced a number of additional domestic tasks - such as treatment issues and problems surrounding education - as a result of their child's autism.

Many parents ask what the prognosis will be for their child and it needs to be made clear that this cannot be given. Statistically, however, many people will need some level of care and support all their lives. Asperger syndrome is not a 'mild' form of autism. It is a serious disability within its own right; individuals with Asperger syndrome have to operate much more in society than people with more classic forms of autism, and they may find the skills of day-to-day living beyond them. It is also vital that families understand that each member of the family, including siblings, needs their own space. A child with autism will have a significant impact on the lives of family members, and it is important to consider all the options as objectively as possible. There is, however, no one answer and each family needs to be considered as an individual unit.

Effects of delay in diagnosis

Futagi and Yamamoto (2002) found that the earlier a child was diagnosed, the sooner the parents came to accept the diagnosis. Gray (2003) studied the impact that children with Asperger syndrome had on the family. He found the median age of diagnosis to be nine years. This meant an exceptionally long referral process, involving contacts with a large number of professionals as parents struggled to find an accurate diagnosis of their child's disability. Very often it was mothers who had this responsibility and they perceived the failure of health care workers to make a quick diagnosis had several negative effects. First, they had the difficulty of relating complicated and, initially, sometimes inaccurate information to their husbands. Second, the absence of an accurate diagnosis exposed many mothers to charges of parental incompetence by health care workers, a charge that was often repeated by their husbands and members of their wider family.

How living with a person with diagnosis affects the family

Parents

There is considerable and consistent evidence that mothers experience greater impact than fathers (Sharpley, Bitsika and Efremidis (1997); Seltzer, 2001). Gray (2003) found the most striking difference between mothers and fathers was the differing personal impact of their child's autism. Although most fathers noted the severe difficulties that their child's autism presented for their families, they usually claimed that their child's condition did not have a significant effect on them personally. This was not true for mothers.

For fathers, the most serious effect on them of their child's autism was through the stress experienced by their wives. In some cases, the child's problems led to direct confrontations between the parents and threatened their marriage, although Siegal (2001) suggests that the divorce rate for couples with a child with autism is the same as that for the rest of the population. This figure, however, only applies to the USA and has not yet been corroborated. However, in a study by Bromley et al (2002), one in three families were lone parents. The Autism Awareness Week report (Broach et al, 2003) showed a lone parent rate of 17%, compared with a 10% national average for the UK.

The relatively less severe impact of the child's autism on most of the fathers appeared to be at least partially due to the gender roles connected to work and child rearing (Gray, 2003). In a few cases, fathers acknowledged that their child's autism might have encouraged a greater commitment to work. However, this does not mean that they were not emotionally distressed by their child's autism. They also had considerable concern about their child's future. In this regard, they may have seen helping their child to reach financial independence as being consistent with their role.

Gray (2003) found that mothers were much more likely to claim that their child's autism had severely affected their emotional well-being. Indeed, many mothers had experienced enough distress to require psychotherapy and/or medication. A study by Bromley et al (2004) found over 50% screened positive for significant psychological distress and this was associated with low levels of family support and with bringing up a child with challenging behaviour. Tonmanil, Harris and Hawkins (2004) estimated an even higher level of significantly elevated stress levels being experienced by two-thirds of mothers. Gray (2003) found bringing up a child with autism also had a significant effect on their careers.

For those that did manage to work, they were often forced to miss work, perform below their normal level or drop back to part-time status. For some mothers, this caused resentment. Mothers were also the parents who were most likely to be held responsible for their child's behaviour, both by their husbands and by people outside the family. Fathers were more likely to be employed full-time. Rodrigue, Morgan and Geffken (1992) compared fathers with children with autism with fathers with a child with Down syndrome and found few significant differences. Both groups reported more use of wish-fulfilling fantasy and information seeking as coping strategies than did the control group of fathers with typically developing children. They also felt a greater financial impact and disruption of family activities than did the control group.

Mothers and fathers also cope differently with emotional distress, with fathers typically suppressing their feelings, often at the cost of anger (Gray, 2003). Mothers tend to vent their feelings and had a wider range of emotional expression, feeling grief and sadness in addition to anger and crying. They rely on talking to friends and family as a way of dealing with their emotions, particularly other mothers with a child with autism. Religion was also viewed as an important coping strategy. Gray (1993) also found mothers to be more stigmatised by their child's disorder. Stigma was exacerbated among those with children who were more severely disabled or children under the age of twelve.

Siblings

Children pick up from an early age that their brother or sister is different, even if they don't understand what actually is wrong. They also notice other people's reactions, especially their parents and grandparents, to him or her. They may be afraid of asking questions, in case they upset their parents even though they have plenty of questions. For example, they may be afraid that they too will 'catch' autism. These questions and worries will change as the child becomes older eg they may fear that when they have children themselves that their child may have autism. Whilst they may have a deep love for their sibling they may also harbour feelings of resentment at the amount of time their parents are spending with the child with autism, and feel that they are being treated unfairly. Feelings of anger, embarrassment and guilt are also normal, as is feeling very protective of their sibling (Anon, 1998).

Of course, not all feelings are negative. As Howlin and Yates (1990) describes, there is some evidence that having a sibling with autism is associated with positive self-concept, interpersonal and care-taking skills. Also, and especially for sisters who assume a greater mothering role than do brothers, this extra responsibility does not appear to contribute to poorer adjustment. Higher parental expectations, however, may fall on the lap of typically developing boys (Miller, 2001).

Research into the psychosocial adjustment of siblings of children with autism has had mixed results (Kaminsky and Dewey, 2002). This also applies to social competence and peer relationships. Whereas some studies, such as that by Rodrigue et al (1993) show decreased levels of social competence, Bågenholm and Gillberg (1991) reported that the siblings of children with autism have high levels of loneliness and problems with peers. Kaminsky and Dewey (2002), however, found low levels of loneliness in the siblings of children with autism but also found loneliness to be related to a lack of social support from friends. Social support from classmates was also significantly correlated with academic problems.

Howlin and Yates (1990) reported on a sibling support group and concluded that the overall conclusion was that such meetings can be of benefit to siblings of a child with autism in offering support, but ideally follow-up sessions should be organised. Significant correlations were also found between number of children in the family and psychosocial adjustment; the greater the number of children in the family, the better the psychosocial adjustment. This is in contrast to Bågenholm and Gillberg (1991) who found that siblings with families with a child with autism seemed more often to prefer being in families with only two children. Possible explanations for this include better adjustment in larger families. Additional siblings provide an important source of social support and the burden is shared. No gender differences were found in any of these analyses.

A review of other research by Miller (2001) revealed that factors such as birth order, gender of siblings, severity of disability and other family factors and parental behaviour will affect the sibling relationship. In particular, less parental attention to siblings was not found to increase feelings of jealousy etc. However, Miller's (2001) own research found this not to be the case. He concluded that the overall response by a sibling to a child with autism was very positive, with no apparent feelings of jealousy or rivalry. Hastings (2003) found boys with siblings who have autism, and also those younger than their sibling with autism, engaged in fewer prosocial behaviours.

Kaminsky and Dewey (2002) suggest that the discrepancy between their results and those of Bågenholm and Gillberg (1991) is that lack of loneliness may be due to the high number of participants' families who attended support groups. Not only will these siblings have greater access to information about autism, but they may be more likely to interact with other families of children with autism. Bågenholm and Gillberg stressed the importance of siblings having simple words of explanation to give to others about their brother or sister with autism. The social help in support groups may facilitate healthy psychological adjustment in siblings of children with autism.

In cases where the sibling of a young child with disabilities is a preschooler, the parents themselves are likely to be in the initial stages of adjustment to the reality of the child's disabilities, resulting in fewer quality interactions with the preschooler than usual (Lobato, 1985). Consequently, these children may be particularly vulnerable to feelings of confusion and isolation.
An interesting pattern of differences was found between the siblings of adults with autism compared to the siblings of adults with Down syndrome (Krauss and Seltzer, 1999; Seltzer and Krauss, 1989, 1994). Siblings of adults with autism were less likely to be married (44% versus 80%). Also they were less likely to feel close emotionally to their brother or sister than siblings of adults with Down syndrome.

Rivers and Stoneman (2003) stress the importance of considering family context as a contributor to the quality of the sibling relationship. They found that families with a child with autism who were experiencing high marital stress and who sought greater support from formal sources external to the family had siblings who reported a higher level of negative sibling behaviours than families who sought low levels of formal support. Also, parents were somewhat less positive about the sibling relationship than did the siblings themselves.

Partners

It used to be thought that people with Asperger syndrome do not marry, because of their social difficulties. This is not true; there are many undiagnosed as well as diagnosed individuals with Asperger syndrome who have partners and children. Some may manage such a partnership and family life very well, others may have great difficulties. However, partners may find living with a person with Asperger syndrome very difficult because of the subtle nature of the disability. There is no physical sign of the disorder, and it can be hard to explain to family and friends that the peculiar behaviours are not deliberate. However, little, if any, research has been carried out to date on this subject and on people with Asperger syndrome bringing up families although there are books on the subject written by partners (Slater-Walker C. and Slater-Walker G. 2002; Stanford, 2003).

Effects on family related to the different life stages of the person with autism

Children

In contrast to other types of disabilities, parents of children with autism appear to be at greater risk for depression, anxiety, social isolation, fatigue and frustration in obtaining accurate diagnoses and services. Indeed, Bouma and Schweitzer (1990) found autism to contribute more to family stress than did cystic fibrosis. Individuals with autism frequently engage in behaviours that are potentially disruptive to family life such as aggression, self-injury, impulsivity, hyperactivity, temper tantrums and obsessional ritualistic behaviour. Studies by Kaminsky and Dewey (2002); Sharpley, Bitsika and Efremidis (1997) and Gray (1993) emphasise the most important factors in parenting a child with autism:

the long and frustrating process of obtaining a diagnosis
the permanency of autism
the lack of public knowledge of autism (although this is improving)
the lack of acceptance of autistic behaviour by society and sometimes family members
very low levels of social support
extremely disruptive antisocial behaviour.

One study (Sharpley, Bitsika and Efremidis, 1997) found that 81.9% of parents reported that they were sometimes stretched beyond their limits, and nearly half of these felt that way monthly or even weekly. The lack of suitable respite care adds to this stress. Barson (1998) found that a third of families did not have any respite support at all, and of those who did, 28% were not satisfied with it.. Obtaining respite care during school holidays is particularly difficult, with autism specific respite services being uncommon (Loynes, 2000).

Sharpley, Bitsika and Efremidis (1997) found no significant difference between parental-well-being according to the relationship parents had with the immediate family who helped out with the child with autism. However, there was a relationship according to the level of understanding which parents felt their relatives had of the child's problems.

Loynes (2000) looked at the financial impact of having a child with autism and found it to be a significant burden to families. There is not only a shortfall between the costs of bringing up a child with severe disabilities and benefits received, but caring for a person with autism or Asperger syndrome commonly impacts on the carer in their ability to work. Anecdotal evidence shows that a significant proportion of families of children with autism are reliant on benefits, having given up their employment due to the demands of caring for their child. However, Broach et al (2003) show clearly that those benefits designed to cover the additional costs of caring for a child with autism did not meet these financial needs.

Adolescents

In adolescence, many families recognise that their child's level of functioning or capacity for independence may not change dramatically in the years ahead. Indeed, whereas for other families adolescence is a time of increased independence and autonomy, for parents of adolescents with autism, family relationships may worsen (Seltzer et al, 2001).

Young people with Asperger syndrome are particularly vulnerable to mental health problems, and this can be difficult for all concerned. Depression in young people with Asperger syndrome may be related to a growing awareness of their disability or a sense of being different from their peer group and/or an inability to form relationships or take part in social activities successfully. Personal accounts by young people with Asperger syndrome frequently refer to attempts to make friends. As one young man said: I just did not know the rules of what you were or were not supposed to do I also did not know how to approach girls and ask them to go out with me. I would just walk up and talk to them, whether they wanted to talk to me or not. Some accused me of harassment, but I thought that was the way everybody did that. Bovee (200?) Indeed, some people have even been accused of harassment in their attempts to socialise, something that can only add to their depression and anxiety.

Adults

There is very little research into the impact of lifelong caring of a person with autism (Seltzer et al, 2001).Reasons for this include the fact that autism did not begin to be fully recognised until the 1960s and the first group of children to be diagnosed were those with the severest form of autism, many of whom went into residential care. Other children who may have had autism were given other diagnostic labels and therefore were not identified for follow-up studies.

Seltzer et al (2001) reviewed studies on adults and concluded that although most individuals diagnosed with autism in childhood continue to manifest the core deficits of autism in adulthood, the symptoms of autism become less severe over time, and the best outcomes are found for those with higher IQ scores and more advanced language ability. They go on to say that these patterns have important implications for the family. Although they face life-long caregiving responsibilities, the challenges of parenting an adult with autism are stressful in different ways, compared with when their son or daughter was a young child or adolescent.

However, this is not the same for the carers of adults with more severe autism and learning disabilities. Krauss and Seltzer (1999) carried out a longitudinal study on families in which the adult had a diagnosis of autism and learning disabilities. These families were amongst the first to have their child diagnosed with autism. They were compared to families with an adult with Down syndrome, matched for gender and age. It was found that the adults with autism had more behaviour problems which in turn put caregiving mothers at risk of higher levels of psychological distress (Krauss and Seltzer, 1999). They were more likely to see themselves as walking on egg shells around their adult child than those with Down syndrome. The authors do, however, caution that their findings are highly tentative and, at best, give avenues for further investigation.

One interesting result the study found was that, whereas the social and psychological well-being of mothers of young children with autism was significantly different from mothers of young children with Down syndrome, this was not the case for those with adult children. Although this might be due to the small sample size or the fact that both groups had learning disabilities and were therefore similar, the authors suggest that social and psychological stress reduces among mothers of adults with autism after decades of caregiving. Over time, mothers of autism became used to caring for someone with autism and there were no differences between them and mothers of an adult with Down syndrome. Further research is therefore required.

There is a tremendous amount of stress placed on the parents of adults with autism who may, in addition, have the additional caring role for their own ageing parents. This is in addition to caring for a person who may show challenging behaviours and other needs. Hare (2004) found a strong association between parental emotional distress and unmet need. Another major issue is the planning of future care for their son or daughter. On the more positive side, there is emerging evidence that some cardinal manifestations of autism, such as obsessive behaviours, social unresponsiveness and communication difficulties, reduce in some individuals as they grow older, which is cause for optimism in these families (Seltzer, 2001).

References

Anon (1998). All in the family: autistic spectrum disorders and sibling relationships. Communication, Spring, pp. 13-17
Available from the NAS Information Centre

Bågenholm, A. and Gillberg, C. (1991). Psychosocial effects on siblings of children with autism and mental retardation. Journal of Mental Deficiency Research, Vol. 35, pp. 291-307.

Barson, C. (1998). Autism: supporting the family. Nottingham: The National Autistic Society.

Bromley, J. et al (2004). Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services. Autism, 8(4), pp. 409-423.
Available from the NAS Information Centre

Bouma, R. and Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: a comparison between autism and cystic fibrosis, Journal of Clinical Psychology, Vol. 46(6), pp. 722-730.

Bovee, J. P. (200?). Personal accounts of being a university student with HFA/AS. At www.users.dircon.co.uk/~cns/jeanpaul.html (Accessed January 2005)

Broach, S. et al (2003). Autism: rights in reality. London: The National Autistic Society
Available from the NAS Publications Department

Bromley, J. et al (2002). The health and social care needs of families and/or carers supporting a child with autistic spectrum disorders. Manchester Health Authority: Manchester.

Futagi, Y. and Yamamoto, Y. (2002). Disclosure of a diagnosis of childhood autism and parents' acceptance to the disability [Article in Japanese] No To Hattatsu, Vol. 34(4), pp. 336-342.

Gray, D. (2003). Gender and coping: the parents of children with high-functioning autism. Social Science and Medicine, 56, pp. 631-642.

Hare, D. J. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8(4), pp. 425-444.
Available from the NAS Information Centre

Hastings, R. P. (2003). Brief report: behavioural adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders, 33(1), pp. 99-104.
Available from the NAS Information Centre

Howlin, P. and Yates, P. (1990). A group for the siblings of children with autism. Communication, 24(1), pp. 11-16 .
Available from the NAS Information Centre

Kaminsky, L. and Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry and allied disciplines, Vol. 43(2), pp. 225-232.

Krauss, M. W. and Seltzer, M. M. (1999). An anticipated life: the impact of lifelong caring. In H. Bersani (ed.), Responding to the challenge: international trends and current issues in developmental disabilities. Cambridge, MA: Brookline Books.

Lobato, D. (1985). Brief report: preschool siblings of handicapped children impact of peer support and training. Journal of Autism and Developmental Disorders, Vol. 15(3), pp. 345-350.
Available from the NAS Information Centre

Loynes, F. (2000). The impact of autism: a report compiled for the All Party Parlimentary Group on Autism. London: APPGA.

Miller, P. (2001). A study into the experiences of children who have a brother or sister with an autistic spectrum disorder, Good Autism Practice, 2(2), pp. 13-29.
Available from the NAS Information Centre

NIASA (2003). National autism plan for children: plan for the identification, assessment, diagnosis and access to early interventions for pre-school and primary aged children with autism spectrum disorders (ASD). London: The National Autistic Society. 1899280855
Available from the NAS Publications Department

Nissenbaum, M. S., Tollefson, N., and Reese, R. M. (2002). The interpretative conference: sharing a diagnosis of autism with families. Focus on Autism and other Developmental Disabilities, 17(1), pp. 30-43.
Available from the NAS Information Centre

Rivers, J. W. and Stoneman, Z. (2003). Sibling relationships when a child has autism: marital stress and support coping. Journal of Autism and Developmental Disorders, 33(4), pp. 383-394.
Available from the NAS Information Centre

Rodrigue, J. R., Morgan, S. B. and Geffken, G. R. (1992). Psychosocial adaptation of fathers of children with autism, Down syndrome, and normal development. Journal of Autism and Developmental Disorders, Vol. 22(2), pp 249-263
Available from the NAS Information Centre

Rodigue, J. R., Geffken, G. R. and Morgan, S. B. (1993). Perceived competence and behavioral adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders, Vol. 23(4), pp. 665-674.
Available from the NAS Information Centre

Seltzer, M. et al (2001). Families of adolescents and adults with autism: uncharted territory. In International Review of Research in Mental Retardation, L. M. Glidden (ed.) San Diego: Academic Press
Available from the NAS Information Centre

Selzer, M. M. and Krauss, M. W. (1989). Aging parents with mentally retarded children: family risk factors and sources of support. American Journal on Mental Retardation, Vol. 94, pp. 303-312.

Selzer, M. M. and Krauss, M. W. (1994). Aging parents with co-resident adult children: the impact of lifelong caregiving. In M. M. Seltzer, M. W. Krauss and M. P. Janicki (eds.) Life course perspectives on adulthood and old age. Washington, DC: The American Association on Mental Retardation.

Sharpley, C. F., Bitsika, V., and Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism, Journal of Intellectual and Developmental Disability, 22(1), pp. 19-28.

Siegal, B. (2001). Quality of life: preventing mental separations and legal divorce. What we (don't) know about the effect of autism on divorce, Advocate, 34(2), pp. 26-29.
Available from the NAS Information Centre

Slater-Walker, C. and Slater-Walker, G. (2002). An Asperger marriage. London: Jessica Kingsley. 1843100177
Available from the NAS Publications Department

Stanford, A. (2003). Asperger syndrome and long-term relationships. London: Jessica Kingsley. 184333107341
Available from the NAS Publications Department

Tomanil, S., Harris, G. E., and Hawkins, J. (2004). The relationship between behaviours exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability, 2004, 29(1), pp. 16-26