Autism and the Impact on Family

Introduction

Autism is considered one of the most debilitating developmental disorders in psychology. Due to changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (2000), practitioners have diagnosed between 10 and 22 per 10,000 births (Bryson, 1996; Costello, 1996). Since the 1980s, autism diagnoses have increased due to diagnostic improvements. While autism’s prevalence has grown, so have autism spectrum disorders (ASD), characterized by psychological abnormalities involving highly repetitive behaviours, social and communication deficits, and minimal interests. For an unknown reason, autism occurs three to four times more in males than females and usually among people with higher IQs rather than lower (Lord & Schopler, 1987). It poses a significant challenge to parents, especially in how they respond to their child’s autism complications. To contextualize this pervasive developmental disorder, it will be critical to review autism characteristics according to the DSM-IV (2000). Following that, discussing the age-related milestones of an autistic child (birth, school-age years, adolescence and adulthood) will provide more detailed information necessary to understand the autistic child’s social development and the hardships parents endure. In addition, assessing the early social development of autistic children (motivation, imitation, and attachment) will provide insight into their ability to socialize and communicate. Lastly, reviewing the hardships and concerns raised by parents regarding their stress in dealing with an autistic child will illustrate the complexity of this developmental disorder. This essay contextualizes family life and family involvement dynamics regarding atypical individuals.

DSM-IV Criteria for autism diagnosis

The diagnostic manual used to identify autism is the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association (2000). The twelve diagnostic criteria are social interaction, communication, activities and interests. Autism patients will not necessarily have all the signs and symptoms associated with the disorder. Although they may exhibit similar symptoms, no two autistic children are alike. To be diagnosed with autism, a child must display two criteria from the first category, two bars from the second category, and one from the third. Here is a closer look at each diagnostic bar according to DSM-IV (2000).

Social interaction

This category is characterized by children who cannot understand nonverbal behaviours and do not know how to use them appropriately. They also do not engage in age-appropriate social interaction. Autistic children:

  1. Make tiny, if any, eye contact
  2. Cannot read facial expressions and respond to social cues
  3. Lack of interaction and failure to develop effective peer relations
  4. Pursue isolation and appear uninterested in people
  5. Hardly enjoy playing and do not initiate play

In their infancy, they react negatively to being held or picked up. In their toddler stage, they will have tiny or extreme attachments to people, even strangers.

Communication

Autistic children also have significant communication deficits. It includes 1) echolalia (repetition of vocalizations); 2) a monotonous tone without intonation or pitch; (3) small amounts of social imitation and spontaneity in situations; and 4) reverse pronouns. According to autism research, approximately forty per cent of children with autism do not develop language, nor are they willing/able to use alternative means of communication—they will not be able to speak or mimic. Infants rarely cry or coo appropriately. The child may lose toddler words.

Activities and interests

Autism children develop repetitive motor behaviour and stereotyped behaviour patterns that manifest in various ways. Autistic children may:

  1. Repeating motor behaviours such as eye-gazing, body-rocking, hand-flapping, tapping, and vocalizations;
  2. Focus excessively on one behaviour pattern or routine and desperately seek sameness in their surroundings;
  3. Have an abnormal relationship/interaction with toys, focusing on specific parts of objects;
  4. Reactions to sound may be extreme because they cannot filter background noises and overreact to auditory stimulation.

In infancy, autistic children may be preoccupied with food textures and tastes. They may stare into space and self-stimulate. Some children may also be fascinated by fabric surfaces.

Children with autism are similar in many ways, exhibiting deficits more in one category than others; however, each symptom is a part of autism, and if enough are present, the child will be diagnosed.

Development of autistic children

Development is highly complicated and filled with uncertainties. Harris (1984) says a family life cycle involves changes in an infant’s development, from birth to adolescence, perpetuated across average families. Amid delivery, an autistic child rarely displays positive affect toward a parent or caregiver. Parents face the challenge of maintaining a healthy outlook despite their child’s disabilities. Research has shown that families with disabled children, particularly Down Syndrome babies, reveal little differences in the amount of caregiving provided to them compared to a standard infant (Gath, 1978); however, autistic babies showcase different and perhaps exhausting behavioural problems for parents.

Once their children enter school, parents encounter a distinct set of problems. These problems are often caused by parents rushing their children to special needs facilities or classes. The autistic child’s physical demands do not change as they grow older; they still require physical and emotional guidance that may trouble parents (Grossman, 1972). A parent’s school-aged autistic child often has siblings, which pressures siblings to adapt to their autistic sibling’s needs. Grossman (1972) says siblings may find it rewarding to care for their autistic sibling. Others may find it harmful. At this stage of development, parents are confronted with resolving tensions between siblings and may even shift complex roles and initiatives towards their regular sibling (DeMyer, 1979). Siblings may be an excellent resource for parents working with autistic children. Still, more siblings may be damaging and counterproductive simply because parents must divide their attention equally to ensure their average child is addressed (DeMyer, 1979). As the school-aged autistic child grows, the mother’s freedom is severely limited because of the time and effort devoted to the physical care and needs of her autistic child (Birenbaum, 1971). The mother deals with the highest levels of stress and prolonged mental and physical pressure (DeMyer, 1979).

Beyond their school-age stage, autistic adolescents pose more emotionally and financially complex scenarios for parents. At this stage, parents of autistic adolescents are confronted with plans for what would happen to them if they died. They are confronted with who would take care of them in the long term and how they could live independently. Beyond this stage comes adulthood–when parents are less able to care for their autistic adolescent physically, responsibilities are shifted to their siblings or next of kin.

Early social development of autistic children

As a pervasive developmental disorder, social deficits may be the most impactful and handicapping aspect of autism. While social deficits are central to autism syndrome, the complicated nature of these difficulties always causes confusion among parents and non-expert professionals. Autistic children’s mental state may not be represented in their random smiles or avoidance behaviours. According to Cohen, Paul and Volkmar (1987), social deficits fall into two categories: attachment and sociability. While early childhood development is perhaps an overwhelming subtopic, realizing the issues encountered by autistic children in their early development will contextualize the overall complications of this pervasive developmental disorder.

Sociability

Sociability refers to a person’s interest and ability to interact with others. While there are several ways to analyze an autistic child’s friendliness, it is essential to consider motivation and imitation.

Motivation

According to the American Psychiatric Association (2000), autistic children lack social awareness. Many studies have shown that very young and school-aged autistic children look at people as frequently as their non-atypical peers of similar age in laboratory settings (Dawson et al., 1990; Sigman & Mundy, 1989; Wetherby & Prutting, 1984). Three factors impede an autistic child’s motivation. These factors make it appear that autistic children lack a basis for social inclusion/participation. These include 1) avoiding direct eye gazing or auditory input; 2) the infrequency with which autistic children try to attract other people’s attention (Dawson & Galpert, 1986); 3) deficits in sharing attention or following other people’s gaze (Kasari et al., 1990; Loveland & Landry, 1986). Autistic children are less likely to point, share, or pay attention to things others gaze at. Baron-Cohen (1989) states that sharing attention does not accurately represent an autistic child’s motivation simply because looking in the direction many individuals are in does not necessarily reflect an interest in viewing that object or perspective. Therefore, the frequency (or infrequency) of an autistic child’s gaze or attention does not adequately reflect motivation.

Imitation

Autistic children’s imitation abilities correlate with other social skills and language development (Dawson & Adams, 1984; DeMyer et al., 1972). As discussed above, autistic children exhibit spontaneous motor imitation of others less often (DeMyer et al., 1972). However, autistic children appear less able to imitate gestures (elicited imitation) or everyday actions with objects (Rutter et al., 1975; Curcio, 1978). Recent research reveals that elicited imitation is the prime indicator of mental handicap and whether or not social skills may be developed through rigorous imitation training and understanding (Stone et al., 1990).

Attachment

Studies show that preschool autistic children are capable of strong attachments to their parents and even show differences in their behaviour once reunited with their parents (Shapiro et al., 1987; Sigman & Mundy, 1989; Sigman & Ungerer, 1984). However, these differences in behavioural changes are very slight simply because autistic children are less likely to respond to a parent’s return with an elicit gesture, and therefore, parents most often report concerns about their autistic child’s attachment to them (Le Couteur et al., 1989; Ohta et al., 1987). Therein lies a contradiction: Parents worry about their autistic child’s attachment to them while simultaneously believing their child is attached to them. In light of issues concerning social behaviour’s extension and interpretation, this contradiction is necessary. Unfortunately, little is known about autistic children’s attachment to their siblings. When an autistic child attends school, they become increasingly attached to their teachers. When they are away, they show distress, and when they return, they respond positively. According to Rogers & Lewis (1989), a preschool autistic child’s relationship with their teacher is essential to their social and language development. Similar to the attachment to siblings, this area requires more rigorous research.

The impact of an autistic child on the family

According to McAdoo and DeMyer (1978), the autistic child is a consistent and chronic source of stress in the family. DeMyer’s (1979) clinical experiences reveal that the failures of a family’s autistic child have a debilitating impact on the structure and cohesion of the family altogether. Furthermore, these failures impede the parent’s development to the point where their relations with their autistic child may be questioned. DeMyer (1979) found that one-third of autistic children’s mothers suffered from depressive symptoms. In addition, DeMyer (1979) also documented that one-third of siblings expressed feelings of neglect because most of the attention was given to their autism-affected siblings.

Furthermore, parents with older autistic children report difficulties concerning uncertain behaviour changes and unstable mental conditions. This may worsen the needs of their autistic child. As the complications of their autistic child grow, DeMyer (1979) stated that parents feel like perpetual caretakers, constantly worrying about the state of their autistic child while expressing their inability to financially take care of them through the use of public services, psychological resources, and institutions that have the experience to deal with autism. Through the use of a 285-item questionnaire given to 29 families, Holroyd et al. (1975) studied stress levels in autism-impacted families. Their study found that families with non-institutionalized autistic children suffered from profound anxiety as their autistic children aged.

Marcus’ (1977) clinical experience with parents of autistic children shows that parents were adversely affected by their children’s disabilities, with persistent fear, worry, and apprehension as the parent’s general mindset. One of the most central issues for parents, according to Marcus (1977), was their inability to cope with their autistic child’s linguistic, auditory, and perceptual handicaps. Furthermore, parents with autistic children are highly unable to deal with their autistic child’s human relatedness—parents put themselves under tremendous stress. In contrast, the autistic child gives them nothing in return. Throughout Marcus’ (1977) experience in dealing with parents of autistic children, he concluded that there is an urgent need for research concerning factors that may add to more progressive coping strategies, access to social activities as well as the development of appropriate expectations because a parent’s developmental expectations may exceed that of their autistic child’s ability to perform.

Leighton (1969) reported different experiences dealing with autistic parents. Her clinical experiences included parents with difficult and perhaps even compromising circumstances that required immediate consultation: 1) issues of high parental expectations for their child; 2) guilt associated with keeping an autistic child, perhaps even blame-shifting concerns; 3) appropriate placement for their children; 4) family assistance and practical solutions; 5) reducing their emotional stress.

Autistic children have significant developmental issues regarding family life because of their incredible sensitivity to physical and emotional attachment.

Conclusion

Autism research is invaluable, for it helps to meet the needs of the rapidly growing autistic population today. This essay focuses on the developmental perspective of caring for autistic individuals and the stresses they create in their surroundings. Still, more rigorous research needs to be done to make conclusive inquiries. To characterize the difficulties families with autistic children have, this essay outlines the extent of mental retardation documented by psychiatrists and psychologists in the Diagnostic and Statistical Manual-IV (DSM-IV). The DSM-IV reveals complex and highly interconnected social and cognitive deficits ranging from social interaction, communication, activities, and interests. While autistic children recognize their parents and miss them when they are away, they experience positive affect when their parents return; however, they show very little elicit expressive gestures, complicating the relationship between the autistic child and their caregiver.

Secondly, this essay explains autistic children’s developmental stages. From childhood to adulthood, parents and siblings are burdened with immense responsibilities that grow with each step. Following that analysis, early social development was examined. Early social development in autistic children is a critical aspect of an autistic child’s development because matters of motivation, imitation (if imitation ability is good, it is used as an indicator of possible social and linguistic development), and attachment were analyzed as factors concerning the overall social well-being of autistic individuals.

Lastly, a significant aspect of this essay included a thorough analysis of the impact of living with an autistic child. While the developmental perspective regarding autistic individuals would indeed have been exhausting, the main issues discussed in this essay were primarily the ability of the family to cope with autism problems.

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