by Marcella Piper-Terry, M.S.
This article was originally written in 2010 and is a review of existing peer-reviewed literature (updated with 2012 CDC data). Written from the psycho-social perspective regarding what many refer to as “autism” this lit review focuses on the effect of an autism diagnosis on the family, with special attention to economic considerations. The biological component of “autism” and the relationship to vaccine-injury is not mentioned in this paper, but is an area of great concern, particularly since so many of the therapies that are benefiting children on the spectrum are not covered by insurance.
Autism Spectrum Disorders (ASD) represent the fastest growing category of developmental disability in the United States. The Centers for Disease Control and Prevention’s (CDC) most recent estimate published in March 2012 indicates that the rate of ASD among American children is greater than one percent of the population. The stress of raising a child with autism has been shown to negatively impact the family structure, with greatly increased divorce rates among parents of children diagnosed with an ASD. Poverty and loss of social support may disproportionately affect single mothers raising children with autism, ultimately contributing to poorer outcomes for their children over time. This paper presents a limited overview of the existing research regarding the effects of stress on families of children diagnosed with autism, and raises some questions for future research into this ever growing population.
Statement of the Problem:
The incidence of autism spectrum disorders (ASD) among American children increased by 78% between 2002 and 2008, according to reports issued by the Centers for Disease Control and Prevention. The most recent estimate from the CDC indicates that 1 out of 88 (1.13%) American children have autism, with the rate among boys estimated to be 1 in 54 [1, 2].
Autism is a pervasive developmental disability, meaning that the impact of the disorder affects multiple aspects of the child’s life. Children who meet the official diagnostic criteria for an autism spectrum disorder exhibit observed behaviors resulting in “marked impairment” that is “persistent” over time and present prior to three years of age. The list of impairments falls under three categories: social interaction, communication, and “restricted repetitive and stereotyped patterns of behavior, interests, and activities” .
Behavioral and Social Aspects of Autism:
Parents often experience increased feelings of isolation and ostracism, even in church, where the family may not be welcome due to the child’s behavior. Extended family members may not understand that a child’s disruptive or destructive behavior is the result of a developmental disability, and may instead attribute problematic behavior to poor parenting and lack of discipline. Grandparents, aunts and uncles often are not willing or able to help care for children with behavioral problems. Researchers have found that the stress and isolation experienced by parents of children on the autism spectrum contribute to higher rates of divorce in families of children with ASD. High divorce rates coupled with inadequate childcare and social support resources often contribute to a downward spiral of financial hardship for the family [4, 5, 6, 7].
In 1943, Leo Kanner described the behavior of the children he termed “autistic” as being markedly different from anything previously known in the world of child psychiatry. Among the behaviors noted in these children were a tendency to spin in circles, flap their hands, rock or jump, especially when excited, and to hyperfocus on parts of objects and toys. Autistic children as first described by Kanner seemed to live in a world of their own, as if they were completely oblivious to their surroundings and the people inhabiting them. They demonstrated poor eye contact and rarely if ever gave evidence of any awareness or understanding of social cues or emotional connection to others. Some children did not speak at all, while others recited lengthy monologues, demonstrating extraordinary verbal memory abilities when compared to their normally developing peers. Other children communicated primarily through single word utterances or short phrases, which often had little or no obvious connection to the context of the child’s present social environment .
The behavior of the first eleven children identified as “autistic” was such that they would not be likely to be successful in social environments with same-age peers. They were described as completely aloof and content in their isolation. Kanner noted that the children appeared determined to engage in solitary activities that led to absolute absorption of their intellectual curiosity, while simultaneously allowing them to block out all other forms of input from outside sources. As long as they were not pushed to interact socially, and as long as their pursuit of a desired activity was not challenged or interfered with, the children seemed perfectly content. However, if they were pushed to interact socially, the children frequently either retreated and hid or reacted with tantrums and aggression. Once upset, the children were extremely difficult to calm and the results of interfering with their goal-directed behavior could continue for long periods of time. Attempts at discipline were frequently ineffective as the children were noted to show no evidence of guilt or even awareness that they had done anything wrong. Attempts to teach through punishment were consistently met with failure as there was no subsequent evidence of learning or reduction of problematic behavior. They could often be destructive. Their parents were noted to be either aloof and disengaged or highly stressed as a result of the difficulties inherent in raising these children .
Misjudged and Misdiagnosed Cognitive Abilities
Children identified as possessing the social deficits, communication delays and behavior problems associated with a diagnosis of autism spectrum disorders are frequently judged by others as possessing inferior intellectual abilities, or as Kanner put it, they were thought to be “feebleminded.” They are frequently misdiagnosed as being “mentally handicapped” due to their inability to communicate with language or to effectively demonstrate their true abilities and learned information on standardized tests of intelligence and academic achievement. Further, those children who exhibit the most problematic behaviors (e.g., aggression, irritability, opposition to authority) may well be the most capable, cognitively speaking, and their high levels of frustration may be a reflection of the fact that they are so capable and understand more clearly than children who are more cognitively impaired, just how much they struggle, in comparison to their more typically developing peers [8, 9].
Affect Regulation and Frustration
The ability of a child to self-regulate his or her emotional responses to frustration obviously has an impact on others, not only within the family setting but also in social and education settings. Children with autism frequently have difficulty regulating their responses to frustration and as a result may lash out aggressively at others when frustrated. This can be particularly problematic in the preschool setting. In a study from 2006 researchers examined Affect Regulation (AR) and temperament in young children with autism, noting that children with ASD may be at a particular disadvantage regarding the development of effective AR, since social interaction is a prerequisite to the development of AR. (Note: click here for an explanation of the meaning and significance of Affect Regulation: http://integral-options.blogspot.com/2010/09/bell-mcbride-affect-regulation-and.html )
Children with autism demonstrate poor affect regulation in the face of even low-level frustration in social settings. Konstantareas and Stewart (2006) found that when presented with a situation young children are likely to encounter when interacting with peers (removal of a preferred toy), children with autism reacted with increased emotionality, lower levels of compliance, and higher levels of irritability and aggression when compared to same age peers without an autism diagnosis. An interesting and unexpected finding was that children with higher cognitive functioning and less severe symptoms of autism exhibited increased levels of problematic behaviors when faced with frustration, even when compared to autistic children who were more severely impaired. Children also demonstrated improved behavioral response (less problematic behaviors) during a second trial, suggesting they may have benefited from the learning process or perhaps habituated to some degree to what had previously been a novel environmental stressor .
“Difficult Children” are Difficult to Parent –
Difficulties with soothing are widely recognized among clinicians working with children with autism, with retrospective inquiry indicating that many children later diagnosed with ASD are irritable and difficult to sooth in infancy. They are often awake and crying for much of the night and are resistant to calming by their sleep-deprived parents. Children with ASD often exhibit a predominantly negative mood, and this can be expected to contribute in varying degrees to conflicts between children and their parents, whose moods may also be negatively skewed, either by virtue of the parents’ natural temperament, or as a result of dealing with chronic stress and frustration associated with parent-child interactions [8, 9].
[Please Note: With regard to the above paragraph, I feel the need to reiterate that this article does not address the biological or medical issues of children who are often diagnosed with “autism.” Many of these children are “difficult” because they are in constant pain from gastrointestinal, neurological and immunological damage.]
Mood, Frustration, and Academic Functioning
Interestingly, there appears to be an inverse relationship between affect and academic functioning when it comes to children with autism. In their study, Konstantareas and Stewart (2006) observed that children who were rated as exhibiting greater negative affect were those who were higher functioning from a cognitive perspective. This suggests that those children who present the most severe behavior challenges for their parents and care-givers in early childhood settings may be the very children who are the most likely to benefit from the consistency and structure of early intervention programs that serve children with an ASD diagnosis. If this is the case, it seems important to investigate whether children who react with aggression and irritability in preschool settings are more likely to be denied access to those settings as a result of their problematic behaviors .
Within the population of children diagnosed with ASD, behavioral improvements are a major focus of early intervention strategies. Interventions targeting improvements in social functioning have been increasingly recognized as being of seminal importance, since they appear to be the foundation on which other therapeutic interventions must build. In other words, in order to benefit from one-on-one assistance with speech and occupational therapies, the child must first be able to tolerate social interaction with another person. For this reason, all other outcomes for children with autism may be influenced by the quality and accessibility of programs that promote increased social interaction at a very young age [9,10].
Kroeger, Schultz and Newsom (2007) investigated the effectiveness of an intervention intended to increase pro-social behaviors in young children with autism. Children with autism were enrolled in one of two play groups that met three times per week for five weeks. In one group, the children received direct instruction of play and social skills through the use of video modeling. The other group was matched in size and types of activities but the “play activities” were without direct instruction. Video modeling has been shown to be an effective method of teaching pro-social behaviors to children with autism, in part because this method of teaching draws on the strength for visual learning observed in many of these children . The results of their study revealed improved pro-social behaviors in both groups as a result of the intervention, with statistically significant improvements in initiating, responding, and interacting behaviors between pre-and post-intervention measures. Children who participated in the direct teaching group demonstrated greatly increased improvements across the board when compared to children who did not receive direct instruction. Learning readiness skills improved for children in both groups, with no significant difference for academic readiness as a result of group. In addition to increased socialization and pre-academic skills, many of the parents reported their children improved in communication skills as a result of the intervention, with some children experiencing substantial increases in expressive language. However, as language was not one of the variables under investigation in the study, there was no formal measurement of reported increases. Given the multiple benefits reported as a result of this kind of intervention, it would seem important to replicate this study and to include measures of expressive language to determine if gains in this area are significant. It would also seem important to determine if this type of intervention is readily available and accessible to families with young children on the autism spectrum .
Access to Services and Interventions: A Significant Source of Family Stress… and Family Coherence
The effort families must expend in order to access effective treatments for young children with autism may have an impact on family resiliency, with easier access to treatment increasing the likelihood of parents remaining married by decreasing the amount of stress and frustration overall [4, 7]. However, difficulties in obtaining services may have the opposite effect on families, by strengthening parents’ interactions with each other as they work together to parent a child with autism. Alteire & von Kluge (2009) studied functional styles and coping strategies in parents of children with autism. The researchers hypothesized that consistent with previous research on family functioning, families with children with autism would be more likely to report effective coping strategies if they were somewhere between the extremes on a continuum ranging from “enmeshed” to “disengaged.” Contrary to expectations, Alteire & von Kluge found that in families of children with autism, those who reported they were enmeshed actually demonstrated increased use of coping mechanisms compared to families whose functional styles fell more to the middle range of cohesion, or for those whose family style was disengaged. In particular, the authors of this study report that among families who were more enmeshed, mothers and fathers were more likely to reach out to others during times of crisis. The enmeshed parents were more likely to report high levels of social support from a network of friends, with mothers reporting higher levels of social support from their friends than fathers. As the authors note, the high level of social support reported by the mothers is important since social support appears to be an effective buffer for mothers of children with autism against the effects of psychological stress, with more socially connected mothers reporting fewer somatic and depressive symptoms .
Alteire & von Kluge’s research needs to be replicated to determine if their findings generalize to a wide range of families raising children with autism. The parents in their study (2009) were all representative of intact nuclear families and had incomes placing them within the middle class social strata. Even so, a number of the parents described considerable financial difficulties and struggles with being able to afford treatment for their children. They also reported investing considerable amounts of time and effort in the search for services for their children and many indicated dissatisfaction with lack of support groups, inadequate research, and educators, therapists, and medical professionals that were “unqualified” and “unhelpful.” It would seem important to further investigate the extent to which the concerns of parents in this study may be echoed by families who are not only experiencing the stress of raising a child with autism, but who are also struggling to greater degrees financially, due to divorce or unemployment. In particular, single mothers who are caring for a child with autism may be at increased risk from a multitude of stressors that impact their daily lives on a deeper level [5, 6, 12].
Parental Stress, Employment, Finances and Support Systems
Gray (2002) observes that the period of early childhood is one of the most stressful times for parents of children diagnosed with autism. He writes that during a child’s early development, after the realization that something is not right with their child, parents go through a period of intense stress as a result of watching their child’s problems become more pronounced in comparison to their normally developing peers. This period of stress builds over time as parents go through the process of seeking an accurate diagnosis and trying to obtain treatment for their child .
In a longitudinal study, Gray (2002) first interviewed parents (N=35) of children with autism, and asked a number of questions about their families’ experiences. The initial assessment was followed up with a second interview of the same parents between eight and ten years later. Questions addressed issues such as the health and well-being of parents and siblings, including financial issues and impact on parents’ careers. Mothers of children with autism were more likely than fathers were to experience significant negative impact on their careers as a result of caring for their children. Many of the mothers were not able to work at all and those who did work outside the home were often underemployed or significantly restricted in the number of hours they were able to work. The lack of outside employment and low levels of employment (e.g., job type or number of hours worked) were associated with greater degrees of psychological distress, with increased reports of depression, anxiety, and anger among these mothers. Possible reasons for the increased distress include more time spent caring for a highly challenging child, less adult interaction, and reduced income associated with increased financial worries.
Mothers who reported the most severe levels of psychological distress were single parents of adolescents who exhibited high levels of aggression and obsessive behaviors. As their children grew larger and more difficult to control, mothers reported more anxiety and increased anger and frustration over lack of appropriate services for their children. Additional factors that contribute to parental stress included increasing concern about the future, lack of services for adults with autism, and fears about what would happen to their children when parents were no longer able to care for them at home due to advancing age and increasing probability of being harmed during a child’s aggressive outbursts. Parents in these situations were more likely to report significant anger at service providers and professionals who had been involved with the care of their children, with responses indicating that they felt betrayed, misled, and taken advantage of financially .
One positive factor that was revealed among parents in this longitudinal study (Gray, 2002) was that many of them experienced increased understanding and support from extended family as time passed. In particular, the relationship with the children’s grandparents tended to improve as the children aged. At the time of Gray’s first interview, it was common for parents to report significant conflicts with their children’s grandparents, many of whom were reported to be highly critical of parents’ child-rearing skills and often denied the existence of a disability in the child. As the children aged, parents in this study reported that the majority of grandparents became closer to the child with autism, and the improvement in the relationship was frequently attributed to the grandparents’ eventual acceptance of the diagnosis .
Dealing with Social Stigma and Judgement
The impact of social stigma and social rejection was also assessed with most parents reporting that the negative impact of the judgments of others decreased over time (Gray, 2002). Possible reasons for this include improved behavior in public as children aged, and reduction of public outings in which the children participated. Mothers also reported that they learned to be tougher over time and became more comfortable speaking up about their child’s autism when others criticized or made negative remarks in public settings. Some parents also benefited from the establishment of supportive relationships with other parents of children with autism diagnoses. In such relationships, parents may gain strength from each other, possibly reducing the effects of stigmatization through shared experience and the realization that they are not alone in their struggles .
The idea that parents of children with autism gain strength from each other through sharing of experiences provides possible insight into the reason why enmeshed family style may be more effective for parents who remain married and are raising children with autism together . Conversely, the impact of divorce among parents of children with autism may significantly worsen outcomes for children as a result of increased stress on the custodial parent due to lost income, lost social support, and increased feelings of isolation .
Economic Hardship – the Cost of Raising a Child with Autism
The financial concerns of raising a child with autism are mind-boggling. The cost of caring for a person with autism across the lifespan was estimated in 2006 to be $3.2 million . This figure includes direct costs such as medical costs and therapies, and indirect costs including those related to education, special camps, and child-care. Child-care costs alone were estimated to range between $38,000 and $43,000 per year, with higher rates associated with greater degrees of disability. Indirect costs also include estimates of lost productivity both for persons diagnosed with autism and for their parents, who frequently cannot work at all or who may have to work fewer hours in order to care for their children. Estimates of lost income for autistic persons and their parents ranged from $39,000 to nearly $130,000 per year .
Given the extreme financial costs of caring for a child with autism, it would seem to be of utmost import that parents of children with ASD stay together. However, the stress associated with caring for a child with autism takes a significant toll on the marriages of their parents, with divorce rates speculated to be 80% or higher in the media . In addition to the financial stress of caring for a child with autism, parents may be limited in their ability to apply effective coping skills. Variability in parental characteristics associated with personality and temperament must be considered in addition to financial stress or daily demands arising from the behavior and health problems of their children [7, 8].
In their study of the occurrence and timing of divorce, Hartley et al. (2010) found that the prevalence of divorce was significantly higher among parents of children with ASD (23.53%) than among parents who did not have a child with a disability (13.81%). Among parents without a child with a disability, divorces tended to occur earlier in the marriage and tended to decrease in frequency as the child grew through adolescence and into adulthood. Basically, if the marriage survived the first ten years or so, the couple was much less likely to divorce. This was not the case for families of children with autism, in which the higher divorce rate remained stable throughout the child’s adolescence and into adulthood, up until approximately age 30 years. The results of this study have been widely reported in the media, and have been presented as evidence that the previous estimates of the divorce rate among families of children with autism were grossly inflated. However, those media reports have frequently failed to note the restrictions in this study, most notably the fact that participants were from a highly selected sample of upper middle class professionals and were 93% white with more than 45% of parents having earned graduate degrees. An additional concern related to the generalizability of findings from their study is that the parents (N=391) of children with autism were all citizens of either Wisconsin or Massachusetts, both of which are states with relatively low divorce rates when compared to other areas of the country .
Mothers of children with autism have been found to experience increased levels of psychological distress. One study from 2008 compared maternal well-being between mothers of young children with autism and mothers of adolescents with autism. The researchers hypothesized that mothers of adolescents with autism would have lower rates of depression, anxiety and anger than mothers of toddlers have, by virtue of the fact that the mothers of older children would have learned over time to cope with their child’s disability, when compared to mothers of more recently diagnosed children .
In their study, Smith, Seltzer, Tager-Flusberg, Greenberg & Carter (2008) found high levels of depression in mothers of both toddlers and adolescents with autism with 36% of mothers of toddlers and 37% of mothers of adolescents obtaining scores in the clinical range on a standardized measure. Mothers of adolescents were significantly angrier and displayed significantly higher levels of behavioral disengagement than mothers of toddlers. In the maternal-adolescent dyads, mothers who had lower levels of depression and lower levels of anger tended to be those who exhibited a stronger ability to reframe their interpretations of their present situation .
Cognitive-behavioral interventions have been used successfully to decrease depression in women with chronic illness and disability . Women who were able to find meaning in their illness through writing and homework assignments demonstrated improved self-esteem, increased assertive behaviors, and decreased incidence and severity of depression. The similarities between this group of subjects and descriptions of the challenges faced by parents of children with autism suggests that a similar form of intervention may be beneficial for single mothers of children with autism (both groups experience high levels of unemployment, social isolation, and depression). With regard to outcomes for children on the autism spectrum, the prevention of maternal depression is an important area to target for intervention, as mothers who are less depressed and angry are more likely to actively engage with their children in healthier and more consistent ways [13,5,6,4,12].
Suggestions for Further Research
The research reviewed in this paper is notable for contributing to the knowledge base regarding sources of stress among families caring for children with autism. However, the findings of recent research may be skewed by presenting results from studies in which there is an over-representation of intact nuclear Caucasian families with high levels of income and education. Future studies should target a more ethnically diverse population and include single mothers with lower levels of educational attainment and lower socio-economic-status. In a less affluent sector of the population, it is likely there are confounding factors that may contribute to increased levels of maternal stress and poorer coping mechanisms associated with raising a child with autism. In particular, it seems important to investigate whether parental reports of feeling misunderstood or unsupported by professionals correlate with increased levels of depression, anxiety and anger in parents. Are these psychological stressors more significant in single mothers than among married mothers? Do single mothers have more difficulty accessing early intervention services? If so, what factors contribute to increased barriers to obtaining services? With the rapid increase in the incidence of autism spectrum disorders in the United States, uncovering the answers to these questions would appear to assume a position of importance in future research regarding the multi-factorial costs associated with caring for these children.
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