Autistic Spectrum Condition (ASC) is a developmental condition, which is characterised by difficulties in social interaction, social communication and rigidity of thought; referred to as the ‘triad of impairments’ as defined by Wing and Gould in 1979. More often children with autism will also have additional difficulties, thus further compounding the already profound impact on the family. The impact of having a child with autism varies from family to family, however it generally affects all members and is far reaching, impacting emotionally, physically and financially. DiagnosisDifficulties in obtaining a diagnosis of autism are well documented, and as children with autism often display developmental difficulties from birth, families experience much early frustration as said by Lawson (2000), ‘Families.
.. may even think that their child is simply out to make life difficult for them. More often than not, the child simply hasn’t understood’.
In addition the delay in diagnosis can lead to its own stresses due to uncertainty, as well as delay in appropriate interventions and specialist educational provision. Even before diagnosis, the majority of families are aware of early abnormalities in their child’s development, this was confirmed in the pilot study by Midence & O’Neill (1999). This study also concluded an earlier diagnosis is needed, and better awareness of developmental problems in young children is needed by health professionals, as once diagnosed parents can begin the adjustment process, and begin to comprehend the diagnosis and plan for the future.The diagnosis itself can have a significant impact on the parents, as it often follows many years of struggling to find an explanation for their child’s behaviour. Nissenbaum et al (2002) studied the impact of diagnosis on families and professionals and they found that parents felt relief to be a benefit as they no longer felt that the problems experienced were due to their poor parenting skills and they have an explanation for themselves but also others of the unusual behaviour of their child. However the diagnosis also brings drawbacks with despair, anger, helplessness, guilt and in some cases disbelief of the diagnosis.
Bruce & Schultz (2002) studied the notion of ‘non-infinite loss’, defined as the ongoing sense of grief experienced by parents caring for children with severe disabilities. They also examined the issues relating to the way professionals interact with the parents who are experiencing non-infinite loss. Bruce and Schultz stated that the parental trauma starts with the diagnosis, at which the intensity of the parent’s emotions limit their ability to understand and register what is being said. Adjustment & Coping strategiesAfter the diagnosis parents will undergo a period of adjustment, all their plans and hopes for their child’s future (and to some extent their own future as well) will have to be changed.
Attfield & Morgan (2007), as did Baron-Cohen, referred to this adjustment period as the parental grief cycle, as parents come to terms with the reality of the diagnosis, they go through a period of adjustment, a cycle of grief akin to bereavement, with stages of shock, anger, gilt and denial, often adopting the coping strategy of withdrawing from the world and seeking information about the condition. Failure to acknowledge these emotions can store up future psychological problems, lead to marital difficulties and affect relationships with other children in the family.Parents bear the brunt of the family responsibility with mothers often feeling the impact of their child’s autism more personally than others. Gray (2003) found that mothers, in particular experience guilt and depression and also attributed that the less severe impact of the child’s autism on most fathers appeared to be at least partially due to the gender roles i.
e. that the father works and the mother rears the children. Benson (2010), investigated the relationship of coping strategies to maternal outcomes. In general it was found that the use of avoidant coping strategies, such as distraction and disengagement was found to lead to increased levels of maternal depression and anger, whilst positive coping strategies such as engagement and cognitive reframing was likely to have the greatest impact on improving parental sense of happiness and well being.
Stanton (2000) categorised parents into worriers and warriors.Worriers cannot move on passed the guilt; Is it their fault their child has autism? Are they doing enough to help their child? Where these worriers get little professional support or advice that works, they can lead to resentment, bitterness often causing more isolation. The warriors fight for the best for their child. Stanton states that whether parents are worriers or warriors or combination of both, parents need to seek partnership with professionals, other parents and partners, not conflict, so they work together to move forward the cause of autism. Hall (2010) confirms previous studies and research, that shows that there is a need for more support and resources for parents of children who have been diagnosed with ASC, and a partnership is needed between families and healthcare providers, so that the necessary support is given to these families receiving such a diagnosis. Schooling, intervention & TreatmentFollowing the diagnosis parents will face a series of additional parental dilemmas.
Parents will then be faced with further searches and decisions surrounding the care, treatment, schooling and life choices for their child. Children with autism are very often excluded from mainstream schools for what is perceived as challenging behaviour and so parents as well as managing that behaviour will have to investigate specialist schools. In some areas there may be lack of good local services, parents will have no option but to seek services elsewhere. Parents will need to seek information on different educational institutions, educational programmes, alternative communication channels, dietary advice, educational techniques and different therapies in order to make informed decisions best for their child.
After schoolThe next trauma for parents is after school, and unfortunately for families there are very few seamless systems. Bicknell (1999) stated that the local authorities’ responsibilities are not so clear when the child with autism leaves school. Parents need to drive and push for their child’s rights to suitable housing and employment. Despite the Disability Discrimination Act in 1996 and new employment rights people with ASC still face discrimination.
The greatest trauma for parents is if and when the child with autism leaves home, and the greatest uncertainty for parents is what will happen when they are not longer around, or unable to look after that child, as the child with autism may not be independent or self sufficient when reaching adulthood. This was noted by Seltzer et al (2001), as families with children with autism recognise that their child’s level of functioning or capacity for independence may not change dramatically in the years ahead. Whereas for other families adolescence is a time of increased independence and autonomy, and for parents of adolescents with autism, family relationships may worsen.Marital strain Coping with a child with autism can lead to difficulties between parents this can result in a breakdown of the relationship, but some researchers, for example Siegal (2001) as cited in NAS 2010, argue that this is no more likely than for families without autistic children.
However in a survey carried out by Higgins et al (2005) the findings showed that carers of children with ASC reported lower marital happiness and family cohesion. This was consistent with Rodrigue et al (1990) who found negative effects of ASC on family functioning. Stresses of raising children with autism can also impact performance at work, which can lead to feeling of resentment or possibly have a financial impact if they are forced to change working hours and responsibilities to fit in around childcare. SiblingsHaving a child with autism will also have an impact on their siblings. Wing (1980) said, ‘The effects are related to a whole series of definable and indefinable factors, including the severity of the child’s handicaps and behavioural problems, the personalities of the brothers and sisters, and the attitudes of the parents’. Early research into the impact that a child with autism has on their siblings mainly investigated the age, gender and birth order of the children.
Some researchers such as Seligman & Darling (1984), as cited in Harris (1994), identified that there was sometimes a greater risk of younger brothers and older sisters developing emotional problems. More recently however researchers have looked more into the experiences of the siblings growing up with a child who has autism. Siblings encounter both negative and positive experiences.The child with autism may embarrass the brothers/sister, the siblings may be reluctant to bring friends home or be jealous of the amount of time parents spend with the child, and a destructive child with autism may break the sibling’s toys. Siblings may also worry about the possibility of either themselves developing autistic symptoms or having an autistic child themselves in later life or worry that they will be responsible for the future care of the child with autism.
These negative experiences may be outweighed by the positive experience of the siblings emerging as richer people for having been part of a family that has a youngster with autism. Howlin and Yates (1990) also showed evidence that having a sibling with autism is associated with positive self-concept, interpersonal and care-taking skills. Harris (1994) confirmed that much research is consist with her own findings that most children are resilient to the impact of their brother or sister’s special needs, however greater challenges exist for such siblings and the parents need to be aware of the sibling’s struggles and they can do much to reduce the impact and the demands imposed on them.A lack of understanding of autism can often leave the siblings feeling anxious and resentful. Parents can remove some of these fears and uncertainties by providing information to the siblings about autism in a timely and age appropriate manner.
Most brothers or sisters of a child with autism manage to generate a positive sibling bond, however as the child with autism is less able to be nurturing or a playmate with the siblings, this can require a lot more care and effort which parents can facilitate. Discussing with other siblings about their expected role, if any, in the future care of a child with autism is a good idea as older children will start to wonder what their responsibilities might be as parents get older. Having an open and honest discussion with all your children about future care is important so that siblings are not worrying unnecessarily.Extended FamilyGrandparents are also affected by a diagnosis of autism, and it may be doubly difficult to come to terms with autism, as they can feel a loss of a ‘normal’ grandchild and will also often worry and experience stress on behalf of the parents. Grandparents can be a huge help when caring for autistic children, and support to the family, and often take a pragmatic approach to autism as they have greater knowledge and wisdom of raising a family than the younger parents, which often enables them to sift through information and be a great emotional prop.
Family Issues The family can experience a sense of increasing isolation. Visitors become fewer, invitations dry up, outings become a rarity and practical help is often scarce.Parents seek information and then often struggle to make informed decisions regarding approaches or therapies for their child. Raising a child with autism may mean an extra financial burden with extra domestic costs, special food, special clothing, replacing damage, specialist support costs or residential care costs.
ConclusionFrom this I am beginning to understand that raising an autistic child is extremely challenging and severely impacts the family unit. These problems are life long as is the autistic condition and families therefore have an ongoing struggle to get the required support and help from professional workers.I have furthered my understanding of the generalities of the condition and how a child with the condition may think, but appreciate that each child reflects their own personalities, family background, experiences and intellectual capability, which has implications for the management and education of each child.When providing support to the child and family, I now feel better informed of the characteristics of the condition, of the variation within the spectrum and of the ongoing struggle that the family have to endure to ensure their child’s specialist needs are met.
In the day to day educational support given to a child I can use my limited knowledge of the impairments and the resultant manifested behaviours to offer greater support and flexibility to that child.From this study my increased understanding of the condition will help me be more supportive and have greater empathy with the families, and as Bitsika et al (1997) as cited by Lawson (2000), said that families who were supported by family, friends and professionals, and who experienced ‘hope’ for the future, suffered less anxiety than those who didn’t.From a personal note this study has highlighted the limited extent of my knowledge of the condition and my desire to continue to learn more, ultimately aiming to improve the support that I can offer.
