Along with the countless rewards of parenthood come many stressors as well. The stress is compounded exponentially when the child is on the autism spectrum. In a study by Hutton & Caron (2005), “stressful” was the most used adjective to describe what it had been like to be a parent of an autistic child. Relief, grief, shock and self-blame were among the variable reactions to the initial diagnosis, according to the same study. Research indicates that raising a child on the autism spectrum is more stressful than most, or all, other disabilities (Holroyd & McArthur, 1976; Donovan, 1988). The reasons for this are many and this article will attempt to explore some of the possible reasons and offer suggestions to mitigate such distress.
An autistic child’s level of communication, or lack thereof, has an impact on parental stress. In fact, some authors believe that the severity of communicative impairment of a child with autism may be the greatest source of family stress (Bristol, 1984; Garfin & Lord, 1986). The dyadic song between mother and child begins from birth and there is virtually instant communication between the two, which fosters bonding. An attuned mother can elicit such magical responses such as social smile, meaningful babbles, protodeclarative pointing, referencing, joint attention, response to name, etc. When the mother cannot elicit the typical “returns,” such as in the case of a child with autism, the mother may become depressed and stop making as many overtures. This cessation, in turn, renders the child less likely to develop socially (Kaplan, 1978) and sets off a cyclical pattern of behavior.
The behavior of a child with autism also influences a parent’s level of stress. When investigating comorbid psychiatric disorders within the population of children with autism, Leyfer, et al (2006) found that the average number of comorbid diagnoses was three. The comorbidities found, in descending order of frequency were: specific phobia, obsessive compulsive disorder, attention deficit disorder, separation anxiety, social phobia and oppositional defiant disorder. Additionally, Summers, Houlding and Reitzel (2004) found that families identified externalizing disorders (e.g. attention problems, aggressive behavior) as a primary concern. The research concerning parental stress connected with autistic children’s internalizing behavior (e.g. emotional reactivity, anxiety, depression) is not as fully researched as externalizing behavior. But the high prevalence of these symptoms in children with autism begs investigation in terms of its possible impact upon parental stress (Bristol, 1984; Summers, Houlding and Reitzel, 2004; Tamanik, Harris and Hawkins, 2004).
Comorbid conditions can only exacerbate the stressful situation. In Barbara Shaunessy’s many years of experience working with parents of children on the spectrum, she found that parents harbor fears, frustration, anger, resentment and guilt about the sacrifices they make to care for their autistic child. Moreover, fear about having a second autistic child also causes concern when parents are considering increasing their family.
Hutton and Caron (2005) found that families of children with autism reported that there was little to no time for family fun or vacations which they reported as stressful. Even the most mundane activities, like haircuts, can have highly charged responses. As one mother told Shaunessy while hysterically crying, going to a neighborhood parade caused the most intense response from her autistic child. She mourned the lack of ability to easily do “normal family things.” The effect on the family cannot be overstated and may cause more parental stress in the form of guilt for a misappropriation of time and attention, and possible concomitant development of over-responsible siblings.
High functioning autistic children and those with Aspergers Syndrome present a more complicated problem. They often have higher intellectual functioning and vary widely in their social language skills. This disparity can obscure, rather than facilitate, the understanding of these children’s functioning (Twactman-Cullen, 2000). This, in turn, can cause more stress to the parents of autistic children with higher intellectual functioning. Indeed, Schopler and Reichler (1972) (as cited in Bristol, 1984) reported that disparities in the abilities of higher functioning autistic children make it more difficult for the parent to know what to realistically expect from his/her child. This, in turn, leads to disagreements within the family as well as in the community at large. This results in parents feeling uncertain and leads to higher stress levels.
Koegel et al. (1992) studied stress profiles across mothers of children with autism who ranged in age from 3.1 years to 23.1 years and who had a wide range of intellectual functioning. Results suggested that there is a common stress profile for mothers of children with autism. Major differences between the mothers of a child with autism and the mothers of normative families were on the dimensions of dependency and management, cognitive impairment, limits of family opportunity and life span care. The authors suggested that these results show the importance of developing treatment programs aimed at reducing stress specific to parents of children with autism.
Several studies have found differences in the stress levels between mothers and fathers of children with autism. Moes, Koegel, Schreibman, and Loos (1992) ran a study to compare stress levels of mothers and fathers of children with autism. Mothers showed significantly more stress than fathers on each inventory. This response pattern suggested that stress may be related to the differing responsibility assigned to child rearing for each parent. Herring, et al. (2006) compared maternal and paternal stress levels in parents of children diagnosed with PDD-NOS and a non-PDD-NOS group. The authors found that child emotional and behavior problems contributed significantly more to the mother’s stress than learning of their child’s diagnosis. Compared with mothers, all fathers reported significantly less stress in relation to parenting their child.
Hastings, et al. (2005) explored how mothers experienced stress differently than fathers. They found that children’s behavior problems and husbands’ depression predicted maternal stress. Interestingly, mothers reported more depression but more positive perceptions about their children and the children’s impact on themselves and family members than did fathers.
Turning Research into Applied Therapy
The point of studying maternal stress in autism is to use the information gleaned from the studies to develop programs that would help alleviate some of it. Hastings and Johnson (2001) and Brookman-Frazee (2004) and Williams and Wishart (2003) point out that the trend in therapeutic techniques in the field of autism is to train the parent to take on more of the responsibility for the delivery of therapy in order to enhance generalization. This has been an outgrowth of the “Parent Empowerment” and ecoculture movements (National Research Council, 2001). Programs which advocate that a parent be a significant partner in his/her child’s therapy also proved to decreased observed stress, improve maternal confidence, and increase more positive affect and appropriate engagement in the children (Brookman-Frazee, 2004).
Presently, there are several therapeutic approaches that teach parents and families to be the therapists for their child with autism. Although some results were equivocal, it was generally found that not only did the child improve, but the parents’ stress levels were reduced. Greenspan’s Floortime (Greenspan & Weider, 1988) and Gutstein’s Relationship Development Intervention (Gutstein & Sheely, 2002) approaches are programs which attempt to lovingly invade the child’s isolative world and make relating fun and rewarding for the child. If the parents are rewarded with these emotional dividends they are likely to feel more connected, more successful, and, perhaps, less stressed. Another program is the Sonrise Program that advocates turning a whole room into a working therapeutic space. Additions to these programs are techniques such as Social Stories (Gray, 2010) and social skills groups for the child. Whatever the combination of therapies a parent assembles for his/her child, it is important that the parent be comfortable with the services provided. Research has found that one of the most important aspects of relieving stress is the parent’s view of the efficacy of the therapeutic “package” (Hastings, Kovshof, Ward, Espinosa, Brown, et al. 2005).
In an airplane parents are always directed to put on their own oxygen mask before they do so for their child. In the same vein, if a parent fails to care for him/herself, his/her ability to help their child diminishes. Therefore, parents are urged to seek out local support groups as well as ones run by organizations such as the National Autism Association, YAI Autism Center, Autism Speaks, and the Center for Autism and Related Disorders, and read newsletters such as Autism Spectrum News. Respites can also be found through these organizations when the pressure is just too much. Seeking one’s own marital or family therapy can go from a mere suggestion to a necessity. Joining advocacy groups can help parents feel more empowered and can help them network with families sharing similar issues. Yoga, relaxation and deep breathing exercises may also be helpful.
As we have seen, language and behavior levels of children with autism can impact parental stress and family functioning. If mothers of children diagnosed on the spectrum between the ages of six to twelve years are interested in participating in a study concerning the relationship between these functioning levels and maternal stress and family functioning they can contact Abigail Connolly at email@example.com.