Finding out that your child has a disability is, for most parents, a life-changing experience. The majority of parents react to this discovery by grieving the loss of the hoped-for normal child. In some cases, this grief is relatively temporary, and then the parent adjusts and learns to be happy with the child that they have. In other cases, this grief is lifelong - that is, lasting until either parent or child is dead.
Parents who cannot adjust to a disabled child, clearly, suffer emotional consequences
themselves - after all, they're perpetually grieving! But many people forget that the disabled children also suffer consequences of their parents' difficulty coming to terms with their disability.
Attachment is the process of bonding between parent and child - the first important relationship that the child will experience. The first hints of attachment are evident at birth, with newborns preferring the voice and smell of their biological mother to any other woman, but true attachment is generally considered to develop around the ages of 1-3 years. At this age, most children show both stranger and separation anxiety to varying degrees, demonstrating a clear preference for proximity of the primary caregiver(s). This is most commonly demonstrated by the Strange Situation, a test in which the caregiver and a stranger engage in a complex sequence of entering and leaving the room, allowing the observation of the child's behavior upon separation and reunion with the caregiver with or without a stranger present.
'Good' attachment is referred to as secure attachment. A securely attached child shows distress at separation, cannot be comforted by a stranger, but is readily comforted by the return of the caregiver. Insecure attachment can take multiple different forms, such as a child who seems unconcerned by separation, a clingy child who is difficult to calm after separation, a child who can't seem to decide whether to seek comfort or push the caregiver away, or so forth. Insecure attachment is associated with an increased risk of many lifelong psychological problems, such as conduct disorder, depression, anxiety, difficulty with romantic relationships or with parenting, and so forth.
, kids with many different disabilities show an increased risk of insecure attachment. In some cases, this has been theorized to be due to a direct impact of the disability on attachment, but the variety of disabilities showing this effect makes this explanation less likely. Although the specific rates of secure attachment varies, many disabilities have less than 50% secure attachment, in contrast with 65% among non-disabled children. Ironically, more severely disabled children often fared better
than mildly disabled children in terms of attachment - for example, children with CP and severe mobility impairments showed higher rates of secure attachment than more mobile children with CP. (Not all disabilities showed this pattern, for example lower IQ autistic kids tended to be less securely attached than higher IQ autistics.)
In general, most studies into attachment have found that parent factors predict attachment better than child factors do. For example, socioeconomic status, parental mental health, parenting styles and abuse/neglect are all correlated with attachment security in non-disabled children. In disabled children, another important factor emerges - parental resolution of disability (usually measured by a structured interview).
According to the literature, a parent who has resolved their child's diagnosis is no longer actively grieving, has a realistic assessment of their child's disability and is focused on the child's present and future instead of their past; while an unresolved parent may be wrapped up in the emotions of the diagnosis, cut off from their emotions, preoccupied with a search for the cause of their child's disability, unable to realistically assess their child's abilities, and so forth.
Marvin & Pianta (1996)
studied resolution and attachment among parent-child pairs where the child had cerebral palsy. The children in this study ranged from 14 months to 4 years old, and had a wide range of functioning - the highest functioning were mobile with little difficulty and had no associated cognitive or language delays, the lowest functioning were incapable of independent mobility and had significant delays (though all had a minimum of 8-10 month level cognitive ability). They had to adjust coding of the Strange Situation to accomodate motor impairments by focusing on behavior (eg crying, smiling, etc) that can be displayed by an immobile child. The parents involved in the study were 67 mothers and 3 grandmothers (women are much more likely to participate in research on parenting, partly because they're more likely to be the primary parents of a child).
They found that 47% of the parents were resolved and 53% were unresolved, with no correlation between resolution of diagnosis and child's sex, severity of disability or time since diagnosis. Similarly, 49% of the children were securely attached and 51% were insecurely attached, with no correlation between attachment security and severity of disability or time since diagnosis. There was a significant correlation between resolution of diagnosis in the parent and security of attachment in the child - 82% of children of resolved parents were securely attached as opposed to only 19% of children of unresolved mothers.
Oppenheim et al (2009)
studied attachment, resolution and insightfulness in dyads of mothers with 2-5 year old autistic sons. Insightfulness is defined as the ability to see things from your child's point of view (likely a difficult task for an NT parent of an autistic child). It was measured by videotaping the child at play and asking the mother to explain what they thought the child was thinking, with raters classifying each vignette as insightful, one-sided, disengaged or mixed. The last three categories were grouped into 'non-insightful'. (Note that they had no way of measuring how accurate the mothers actually were, but the insightful mothers at least made a reasonable effort to understand their children.)
Firstly, 42% of the mothers were insightful and 58% were non-insightful, while 33% were resolved and 67% unresolved (insightful mothers tended to be better educated, the only association with background variables). In addition, 42% of the children were securely attached, 38% were insecure but organized, and 22% were disorganized (organized/disorganized reflects whether the child has a coherent strategy for coping with the situation; in essence, disorganized is the most severe category of insecure attachment). Lower functioning (IQ < 70) children were more likely to show disorganized attachment, but functioning level was unrelated to maternal insightfulness or resolution. Mothers were divided into three categories - insightful and resolved (27%), one but not the other (22%, most insightful and unresolved) or noninsightful and unresolved (51%).
There was a clear association between the three groups and attachment security - 83% of children of insightful/resolved parents were securely attached as opposed to 20-30% for the other two groups, who did not differ from each other. The same significant result occurred when they analyzed low functioning children only (they had too few high functioning kids to analyze them separately).
Barnett et al (2006)
studied parents and their 1-3 year old children with congenital anomalies, including cerebral palsy, cleft lip/palate, and other conditions. The children were divided into two groups - neurological impairments and physically disfiguring conditions. Most of the children (68%) were followed up 11-30 months later, the parents who agreed to follow-up were more likely to have been unresolved at time 1 and to have a child with a neurological impairment.
Parents were more likely to be unresolved about a child's neurological disability than disfigurement. Parental resolution predicted child attachment, and when parental resolution was controlled for, disability type was unrelated to attachment. Among securely attached children, 72% had resolved parents, as opposed to 13% for insecurely attached children. There was a tendency towards a shift from insecure to secure attachment between time 1 and 2, as well as a shift towards greater resolution of diagnosis among parents.
Overall, this suggests that parental reactions to disability are a major determinant of the well-being of their disabled children, which indicates that better understanding of why parents react the way they do, and what can promote healthier reactions to disability, is important to building better lives for disabled children. This issue really matters.