AUTISM AND ITS IMPACT ON FAMILIES
The initial autism diagnosis leaves parents and siblings confused and they may have a hard time accepting that the child/sibling they were anticipating is not the child/sibling they expected. This new transformation in their family impacts the relationships in the family, as feelings of fear and worry encompass the family system. It is important for social workers to have general knowledge and resources regarding this because social workers will encounter families in the school system or in other settings.
Autism Spectrum Disorder, also known as ASD, is extremely complex and has a wide range of symptoms. ASD is categorized in the Diagnostic and Statistical Manual of Mental Disorders, IV ed. (DSM-IV) as a pervasive developmental disorder. An individual diagnosed with autism may communicate verbally or nonverbally, they may follow restricted and repetitive routines as well as exhibit restricted motor mannerisms (American Psychological Association [APA], 2000, p. 72). Children who are diagnosed with ASD are very interested in friendships but lack the social skills to develop these relationships and are unable to relate to peers. The population often displays atypical sensory related behaviors such as excessive rocking, spinning and twirling in order to self-stimulate. Another aspect of the autism diagnosis can be sound sensitivity. Children who are diagnosed with ASD may be observed covering their ears or wearing a headset to drown out unwanted sounds (Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011). Behavioural symptoms are also recognized in children diagnosed with autism including hyperactivity, short attention span, impulsivity, aggressiveness, self-injurious behaviors and temper tantrums (APA, 2000, p. 72).
The autism spectrum ranges from low to high with some symptoms being more extreme than others and because of the wide range of manifestations, this disorder varies greatly. ASD is typically diagnosed in children by the age of three where difficulties are recognized in the area(s) of social interaction, language for communication, and/or restricted, repetitive, and stereotyped patterns of behaviour (MacFarlane & Kanaya, 2009). ASD is one of the top three most expensive diagnoses in special education. Generally, students diagnosed with ASD are eligible to receive services for special education only if the child’s impairment or behaviors are interfering with his or her academics (MacFarlane & Kanaya, 2009). The development skills of a child with ASD could progress normally in the first years of life but then deteriorate or progress no further. It has been reported that up to 30% of children with ASD regressed in their development skills or completely lost these skills before the age of two and up to 11% of children who are diagnosed with ASD, prior to the age of two, had development skills that did not progress any further (Rice & CDC, 2009). If a child presents no eye contact or is not meeting developmental milestones, this may indicate an autism diagnosis and parents should seek out professionals to conduct appropriate assessments (Whelan, 2009).
Impact on Parents
Parents whose child is diagnosed with ASD experience difficulties and it changes the dynamics of the family in that everyday activities need to be modified and the child with ASD will need extra attention from the parents. Learning that your child is autistic can result in scattered emotions for the parents. Each family handles the vision of their child differently. Just as the spectrum varies, so does each family’s experience. Upon hearing their child’s diagnosis, one study found that in parents, “52% felt relieved, 43% felt grief and loss, 29% felt shock or surprise, and 10% felt self-blame” (Banach, Iudice, Conway, & Couse, 2010). Often, parents are relieved that they were given an answer in regards to their child’s symptoms but this does not erase the stress that they endure while raising a child with autism. Parents often experience stressful situations upon the initial diagnosis that relate to their child’s behaviour, adapting to this new lifestyle and the complexity of finding access to the appropriate services useful to the family (Banach et al., 2010).
Stressors from an ASD diagnosis can cause a strain on parent’s marital relationship, increase financial burdens in the family and result in parents socially isolating themselves from others. Parents experienced stress as a result to modifying goals and activities for their child diagnosed with autism, having to implement different arrangements for the child’s education as well as grief due to limited opportunities offered to their child (Naseef, 1989). Findings indicated that mothers reported having more stress than fathers related to their child diagnosed with autism as mothers are usually the primary care givers of these children and are more active in the child’s education (Dabrowska & Pisula, 2010). In the following section, parental stress of receiving information that their child has autism will be explored (Autism Society, 2011).
One main stressor for a parent is their child’s inability to express their basic needs. This produces frustration for both the parent and the child. The parent will experience difficulty clarifying the needs of their child diagnosed with autism while the child will experience difficulty expressing their own needs. This can often result in aggressive behaviors for the child diagnosed with ASD as parents may be unaware if their child is hungry, sick, tired, hurt, sad or mad. This is especially stressful for the children who are non verbal. Extreme worry may also be present in parents as their child may be unable to report abuse or neglect in other settings. Parents experience worry and concern that their child may be potentially harmed because often, they cannot communicate verbally and are highly vulnerable (Autism Society, 2011).
Another stressor is parents taking their child diagnosed with autism out in the community. Persons out in the community may not understand or be sensitive to the behaviors that may occur. This also makes parents hesitant to take their kids over to friends or relatives houses because they feel as though they cannot socialize or relate. This sometimes leaves parents experiencing a sense of isolation from their friends, family and the community (Autism Society, 2011). A third stressor parents experience is the concern for their child’s future welfare. Parents provide the best care and understand their children. They may experience fear as they plan for their children’s future and examine ways of proper care. Some children, depending on their developmental ability, may need toileting and bathing assistance. Future care giving presents stress in parents because in certain circumstances, there are no other family members capable of taking over when the parents are no longer able to care for their child (Autism Society, 2011). A fourth stressor for parents is the financial aspect.
A child diagnosed with autism needs several services to assist in their care and can often times be financially stressful for the parents. A child may need evaluations, home programs, and various therapies which can be expensive. After the child turns eighteen and the parent wants to continue having custody of that child, court and a nominal guardianship fee is required. If one parent has to give up his/her job to help with caretaking, this can be financially stressful as it leaves one parent to support the entire family (Autism Society, 2011). Finally, feelings of grief can be stressful on the parents. The ‘typical’ child parents were expecting is no longer reality. They are faced with the loss of lifestyle changes and drastic changes in their family dynamics that may be produced from an autism diagnosis. Parents grieve the loss of the child they expected for themselves and their family (Autism Society, 2011). These feelings of grief can occur throughout the parent’s life as different events can trigger this grief. Some triggers include birthdays, holidays, continuous care giving, weddings and reproduction.
Routines in Autistic Children
Children diagnosed with autism often follow specific routines in their everyday life. One study indicated that parents have to rearrange their daily routines to accommodate to the child as the child is unpredictable and often unable to regulate their behaviour. Parents reported that routines were much easier to follow in familiar spaces such as their own home, however more difficult in unfamiliar places such as another relatives home or out in the community (Schaaf et al., 2011). The parent often feared that if the child became deregulated, the child would damage another’s belongings. In unfamiliar places, parents often do not have the tools needed to prevent or cope with disturbances that could possibly set off the child. This resulted in parents taking less family vacations, attending limited community outings and isolating themselves from family and friends (Schaaf et al., 2011).
Parents reported morning routines to be most difficult as most meltdowns occur during this time due to sensory issues, causing the child to be late for school and the parent to be late for work. Mealtime was challenging as a child diagnosed with autism can be sensitive to certain textures of food, often refusing to eat (Schaff et al., 2011). Although raising a child diagnosed with autism can be extremely stressful and life changing, families may not have a negative experience. Parents are able to find resilience in their child’s autism diagnosis and are able to recognize positive ways in which the autism has impacted their lives. A child diagnosed with autism allows the family to se life from a strengths based perspective. The child with autism helps the parents and siblings become more empathetic and compassionate to other kids who may be viewed as different (Neely-Barnes, Hall, Roberts, & Graff, 2011).
Informing Siblings of ASD
In addition to the parents, siblings are also very much impacted by the autism diagnosis. Siblings, however, may not fully understand the diagnosis as they do not receive explanations from specialists and are still developing themselves. One study indicated that siblings reacted adequately when informed by their parents about their sibling’s autism diagnosis. They showed a more accepting attitude than expected as well as understanding and a desire to learn more about the diagnosis (Tanaka, Uchiyama, & Endo, 2011). It is important for siblings to be informed of their brother/sister’s autism diagnosis so they are able to connect with peers who are experiencing the same situations. Another study’s findings indicated parents were more likely to inform their typically developing child when they were older than their sibling diagnosed with autism by two years or more. Typically, parents informed their children of a sibling’s autism diagnosis followed by information which would allow them a further understanding of their sibling (Tanaka et al., 2011).
There are several sources of stress that a sibling could experience when having a sister/brother with autism. The following paragraph will examine some of the main stressors found. One stressor for siblings is the embarrassment around peers. In having a sibling with autism, they may say or do things that others find “weird” and/or exhibit aggressive behaviors. A sibling may feel awkward or nervous bringing friends around their brother/sister with the fear of the unknown (Autism Society, 2011). A study indicated siblings ages 7-20 who have a brother/sister diagnosed with ASD mentioned feelings of embarrassment. Another study confirmed these results with siblings reporting the negative aspect of having a brother/sister with autism is feelings of embarrassment (Orsmond & Seltzer, 2007). Another stressor for siblings is the jealousy regarding the amount of time parents spend with their brother/sister diagnosed with autism. Due to the significant needs of children with autism, the sibling may feel as though he/she is being ignored. It may be hard for some parents to balance time with their other children if their child with autism is in high need. A child with high needs may require assistance with eating, toileting, personal cares and behaviour modification which can occupy the parents time. In some cases, the typically developing child may act out in hopes to intercept some of the parental attention (Autism Society, 2011).
A third stressor for siblings is the frustration over not being able to engage or receive a response from their brother/sister with autism. It can be hard for siblings, especially at a young age, to figure out how to engage with their brother/sister with autism. These siblings may also become the target of aggressive behaviors, pushing them away from wanting to engage and play with their brother/sister with autism (Autism Society, 2011). A study reported that in siblings ages 8-15, 84% reported aggression produced by their brother/sister with autism when trying to interact with them (Orsmond & Seltzer, 2007).
A fourth stressor for a sibling is the concern regarding their parent’s grief and stress. A child is able to sense when a parent is stressed which in turn stresses out the child. Unconsciously, the parent may take their grief and stress out on the sibling. The sibling may also feel the pressure to have to make up for the deficit of their brother/sister with autism (Autism Society, 2011).
Finally, the concern over their role in future care giving of the child diagnosed with autism can be stressful for siblings. A study indicated siblings reported significant concern regarding the future of their brother/sister’s autism (Orsmond & Seltzer, 2007). A sibling may feel obligated to take over for the parents when they are no longer able to care for the child diagnosed with autism. On the other hand, a sibling may be persistent about taking over for the parent, however, fear they will not be able to provide appropriate care and financial stability by the time the care is needed. A sibling often worries about what will happen to their brother/sister with autism in the future (Autism Society, 2011).
Research shows that grandparents have been described as providing emotional, practical, and instrumental support as well as being emotionally supportive and providing the parents with empathy (Hillman, 2007). Findings in this study supported current literature. Participants reported grandparents always being around to help and providing a great deal of support. However, there was an interesting finding in this area regarding a cultural difference. One participant reported being Puerto Rican. This participant reported that extended family tends to ignore her brother with autism because not many people in the Puerto Rican community are familiar with autism and how to manage the behaviors it can produce. There was no research supporting or disagreeing with this finding.
Autism care is complex, costly, and fragmented
Autism spectrum disorders (ASDs) are a complex set of disorders characterized by impairments in social interaction and communication, often accompanied by repetitive behaviour patterns. They manifest in early childhood, by definition by 3 years of age. Children with ASDs can have other psychiatric symptoms, such as anxiety and hyperactivity, and many have self-injurious or aggressive behaviour.
• The number of children diagnosed with ASDs is growing. The CDC estimates that among 8-year-olds, 1 in 88 children have ASDs, an increase of 23% since 2006. It is not clear how much of this increase is an actual increase in prevalence, and how much is due to better identification of cases, because of improved awareness and access to care.
• The lifetime costs of autism, including direct and indirect costs, have been recently estimated at $1.4 million for someone without intellectual disability and $2.3 million for someone with intellectual disability. Non-medical costs, such as intervention services, special education, child day care, and residential placements for adults account for the largest proportion of costs.
• Recommended interventions for children with ASDs include intensive and prolonged community-based behaviour and socialization therapies. Interventions based on principles of applied behaviour analysis have improved outcomes for some, though not all, children. Because of the challenging behaviors that children with ASDs often exhibit, they and their families also can benefit from
• Autism care is fragmented across health and educational systems, and insurers sometimes exclude these therapies as “non-medical.” States have tried to address financial barriers to autism care through the use of Medicaid home and community-based waivers (nine states) and private insurance mandates
Economic impact of ASDs on family
To gain a more comprehensive view of the economic impact of ASDs on the family, Mandell and colleagues studied how raising a child with ASD might relate to changes in parental employment. They wanted to know how having a child with ASD might interfere with employment and earnings. They assessed labour force participation and earnings for parents with children with ASDs, compared to parents of children with another health limitation and children with no limitation.
• The researchers used the 2002-2008 Medical Expenditure Panel Survey (MEPS), a nationally representative survey of U.S. households. MEPS collects information on medical conditions, health service use, health status, and health insurance for each member of the household.
• The study included 261 children with ASDs, 2,921 children with another health limitation, and 64,349 children with no health limitation.
• The study analyzed labour market outcomes for mothers and fathers, including employment status, hours of work per week, and annual earnings. The analyses adjusted for other factors that could contribute to differences in income, including parental age, education, race, region, health status, and family size.
Families who have a child with autism share many of the same feels of frustration, stress, constant need for schedules, and also feelings of hope and goals for the future. Parents often realize early on that their children are different but they are not sure just what is wrong. When a referral is finally made it is often the parents who are feeling desperate, traumatized and often at the "end of their rope." Even after a diagnosis is made, that is just that start to a world that can be more about paperwork and waiting lists than a day at the park or a week's vacation. Once parents move past some of the feelings of sadness, guilt and trauma, they find themselves searching for services that can seem unobtainable. Even when services are found, there can be a lack of qualified people to fill the positions which leads to even more frustration. Other siblings in the household can often feel left out and have feelings of jealousy at all the extra attention their brother or sister with autism is receiving. Sibling support groups and special attention to their needs are need in more areas throughout the state.
It is often the family as a whole that is greatly affected by the diagnosis, whether it is the parent running to an appointment for their child with autism or completing another piece of paperwork, or the aunt watching the child for a couple of hours so that the parents can have some time alone away from home. Aunts, uncles, grandmothers, and grandfathers are important sources of support and should receive as much education and information on autism as they can. Often a parent will get the "bulk" of the information, but a grandparent will be left out, only to learn more about the child by telephone every now and then. The community as a whole can do a lot to educate the whole family unit and provide the support groups for families that can be empowering for so many parents.
Finally, if anything can be learned, it is that families are strong and adaptable to the challenges and joys of having a child with autism, and are remarkable in the ways they have found to help cope with uncertainty and a diagnosis that still has no known cure. We have the power to affect change. Increased services are needed, more efficient ways of doing paperwork, and increased funding for respite and other services for parents who never go home from work like most people. With education comes acceptance and support for the services many families are still desperately seeking. Now is the time to move forward and take another step towards solving the puzzle known as autism.
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