Tuesday, March 13, 2012

Inability to Accept a Child's Disability: Impact on Attachment

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.

In general, 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.

9 Comments:

Blogger MJ said...

You do know that the refrigerator mother theory of autism was debunked quite a while back, right?

5:25 AM  
Blogger bob said...

Very informative post.

Not sure why MJ brings up refirg mom - you're talking about parental reactions to the fact of their child's disability (of all sorts), not the causation of autism.

In any case, your last paragraph sums it up quite well. Thanks.

7:53 AM  
Blogger MJ said...

Because blaming what is a fundamental part of a child's autism on the parent's lack of affection/attention to the child is exactly what the refrigerator theory of autism was all about.

I can't speak directly to CP or other congenital anomalies but I do know for certain that children with autism fail to form appropriate attachments to their caregivers because that is one of the core features of autism - not because their parent's didn't accept their autism.

And that is even completely ignoring the facts that the behaviors of autism (and the diagnosis) aren't present during the time period when attachment occurs and the fact that some children with autism do attach to their parents only to loose the connection when they regress.

Besides, all of the arguments in the post presume that the effects go in only one direction - parent to child. There is a second, equally important, part of the relationship and that is from child to parent.

Even if there is a relationship between attachment and parental acceptance, you can't presume that the causal relationship goes only one way.

In other words, it is just as likely that a parent's inability to accept their child's disability is caused by a child's lack of attachment as it is that a child's lack of attachment is caused by a parent's lack of acceptance.

11:33 AM  
Blogger Ettina said...

"I can't speak directly to CP or other congenital anomalies but I do know for certain that children with autism fail to form appropriate attachments to their caregivers because that is one of the core features of autism - not because their parent's didn't accept their autism."

No, in fact that was directly assessed by the studies. The only child factor among autistic children that predicted attachment was IQ - and that did *not* predict secure vs insecure, just what type of insecure attachment they showed. Autism severity itself (as measured by ADI-R and ADOS scales) had no relationship to attachment. Whereas maternal resolution and insightfulness *did* predict attachment security, regardless of the child's functioning level.

With regards to the direction going the other way - if so, we would not see the exact same correlational pattern in autistic kids, kids with CP and kids with cleft lip/palate. Those three conditions have very different impacts on child development, there is no logical reason why all three would impair attachment. However, all three are seen by our society as disabilities, causing a basic commonality in the reactions of the people around them.

Furthermore, current research on autism generally shows that autism impacts far more on social *competence* than on social motivations. In other words, most autistic kids do want to connect with others, they just don't know how. This does not imply lack of attachment. And contrary to the stereotype that autistic kids are unconcerned about their parents leaving, almost half of the organized insecure attachment group consisted of children with ambivalent attachment, which if anything involves *more* distress at separation.

And in any case, none of this has *anything* to do with the refrigerator mother theory, since no one is arguing that nonresolution *causes* autism. In fact, the very idea is nonsensical, since the child must first have a disability before you can assess how the parents have adjusted to the disability. (Insightfulness, in contrast, is a relevant measure among parents of nondisabled children, but nevertheless the researchers aren't suggesting that uninsightfulness causes autism either.)

12:39 PM  
Blogger Ettina said...

"I can't speak directly to CP or other congenital anomalies but I do know for certain that children with autism fail to form appropriate attachments to their caregivers because that is one of the core features of autism - not because their parent's didn't accept their autism."

No, in fact that was directly assessed by the studies. The only child factor among autistic children that predicted attachment was IQ - and that did *not* predict secure vs insecure, just what type of insecure attachment they showed. Autism severity itself (as measured by ADI-R and ADOS scales) had no relationship to attachment. Whereas maternal resolution and insightfulness *did* predict attachment security, regardless of the child's functioning level.

With regards to the direction going the other way - if so, we would not see the exact same correlational pattern in autistic kids, kids with CP and kids with cleft lip/palate. Those three conditions have very different impacts on child development, there is no logical reason why all three would impair attachment. However, all three are seen by our society as disabilities, causing a basic commonality in the reactions of the people around them.

Furthermore, current research on autism generally shows that autism impacts far more on social *competence* than on social motivations. In other words, most autistic kids do want to connect with others, they just don't know how. This does not imply lack of attachment. And contrary to the stereotype that autistic kids are unconcerned about their parents leaving, almost half of the organized insecure attachment group consisted of children with ambivalent attachment, which if anything involves *more* distress at separation.

And in any case, none of this has *anything* to do with the refrigerator mother theory, since no one is arguing that nonresolution *causes* autism. In fact, the very idea is nonsensical, since the child must first have a disability before you can assess how the parents have adjusted to the disability. (Insightfulness, in contrast, is a relevant measure among parents of nondisabled children, but nevertheless the researchers aren't suggesting that uninsightfulness causes autism either.)

12:39 PM  
Blogger MJ said...

"No, in fact that was directly assessed by the studies. "

But the studies you are citing are weak, at best.

For example, the "insightfullness" measure in the autism one is completely fictional. It could equally be called a measure of how plausible the mother's explanations sounded because there was no way to verify what the mother thought was true. So "insightfullness" is really a measure of is how well the mother made up stories to explain what her child is doing and how much the researchers believed her stories.

Marvin & Pianta (1996) was a validation study of a specific test (RDI) that is supposed to test "parental resolution of a child's diagnosis". But in this study, the relationship between parental resolution and the child's attachment is already assumed to be true and the RDI is deemed to be successful if it predicts the results of the Strange Situation. From the abstract -

"To assess the validity of the RDI, 70 mothers of infant and preschool children with a diagnosis of cerebral palsy were administered the RDI, and the security of each child's attachment to his or her mother was assessed using the Strange Situation."

You can't start out by assuming that a parent isn't resolved if the child isn't attached and then use it as evidence that the parent's lack of resolution causes the child's lack of attachment.

"Furthermore, current research on autism generally shows that autism impacts far more on social *competence* than on social motivations. In other words, most autistic kids do want to connect with others, they just don't know how."

I know that is a popular idea but I have never seen this actually demonstrated.

"This does not imply lack of attachment."

Are you really arguing that autism does not cause insecure bounding or that children with autism don't have abnormal reactions to strangers?

"And in any case, none of this has *anything* to do with the refrigerator mother theory, since no one is arguing that nonresolution *causes* autism."

You are missing the main point of the theory. The main point and the part that caused the most damage was the idea that it was something that a parent did that caused damage to the child.

In the refrigerator theory it was cold, uncaring parents causing autism. In what you are saying, it is parent's not accepting their child causing the child to not bond with the parent.

The core idea is the same - the parent didn't care enough for their child and the child was hurt as a result. Both ideas blame the parent for something that is outside of their control.

8:25 AM  
Blogger Ettina said...

"It could equally be called a measure of how plausible the mother's explanations sounded because there was no way to verify what the mother thought was true."

True. But that's still a viable measure - for example if a parent just answers 'I have no freaking clue' to every question, they probably understand less about their child than a parent who is actively theorizing based on the behavior their child has actually engaged in. In order to notice things, you have to be observing.

Incidentally, I found a study that experimentally modified 'mindfulness' (which appears to be synonymous with insightfulness) in parents of autistic children, and found that training in mindfulness resulted in a decrease in the child's aggression, noncompliance and self-injury. You can find the study here:

http://ebx.sagepub.com/content/14/3/169.short

"You can't start out by assuming that a parent isn't resolved if the child isn't attached and then use it as evidence that the parent's lack of resolution causes the child's lack of attachment."

That's not what they did. Parental resolution was assessed by interviewing the parent about how they felt when their child was diagnosed - it was not measured by observing the child. This measure predates that particular study. Part of deciding that a new assessment measure is valid is seeing if it predicts something of importance.

(By the way, could you only read the abstract of that study? If you give me your e-mail address, I could mail you a copy of the full paper. As a university student I have access to a lot of journal articles that the general public can't access.)

"I know that is a popular idea but I have never seen this actually demonstrated."

Sorry, yes, I was overstepping my claims there. There are some findings suggesting that, however, such as the very clear distinction between psychopathy and autism on psychometric tests:

http://eprints.ucl.ac.uk/11879/1/11879.pdf

But you're right, this hasn't been directly demonstrated.

"Are you really arguing that autism does not cause insecure bounding or that children with autism don't have abnormal reactions to strangers?"

Abnormal reactions to strangers, yes. Insecure bonding, no. Contrary to what psychoanalysts thought, autism really has little to do with parent-child bonding. (I know this is a common misconception - I remember in the Autism Every Day video one parent seemed to think her child didn't care about her when the child was repeatedly hugging and cuddling her.)

"You are missing the main point of the theory. The main point and the part that caused the most damage was the idea that it was something that a parent did that caused damage to the child."

But parents *can* cause damage to their children. And contrary to parent-blaming stereotypes, most of this damage is done by loving parents who want to do their best. If parents are unintentionally harming their children, it'll help both parent and child to identity and treat the problem at hand, instead of just blaming it all on the child's disability. Whether or not the child has autism is something we don't currently have power to change, but we can help parents come to terms with the child's disability, as shown by this study:

http://www.nova.edu/ssss/QR/QR10-3/orme.pdf

Incidentally, I'm really sick of the black-and-white thinking many people have about parenting. Either you're a perfect parent who never does anything wrong, or you're a bad parent who deliberately and maliciously hurts your child. This dichotomy is cruel to both parents and children - parents are *people* and they're fallible like anyone else. No one is a perfect parent, but if you point out how fictional that is, people assume you're going for the other stereotype instead.

6:38 AM  
Blogger Ettina said...

"It could equally be called a measure of how plausible the mother's explanations sounded because there was no way to verify what the mother thought was true."

True. But that's still a viable measure - for example if a parent just answers 'I have no freaking clue' to every question, they probably understand less about their child than a parent who is actively theorizing based on the behavior their child has actually engaged in. In order to notice things, you have to be observing.

Incidentally, I found a study that experimentally modified 'mindfulness' (which appears to be synonymous with insightfulness) in parents of autistic children, and found that training in mindfulness resulted in a decrease in the child's aggression, noncompliance and self-injury. You can find the study here:

http://ebx.sagepub.com/content/14/3/169.short

"You can't start out by assuming that a parent isn't resolved if the child isn't attached and then use it as evidence that the parent's lack of resolution causes the child's lack of attachment."

That's not what they did. Parental resolution was assessed by interviewing the parent about how they felt when their child was diagnosed - it was not measured by observing the child. This measure predates that particular study. Part of deciding that a new assessment measure is valid is seeing if it predicts something of importance.

(By the way, could you only read the abstract of that study? If you give me your e-mail address, I could mail you a copy of the full paper. As a university student I have access to a lot of journal articles that the general public can't access.)

"I know that is a popular idea but I have never seen this actually demonstrated."

Sorry, yes, I was overstepping my claims there. There are some findings suggesting that, however, such as the very clear distinction between psychopathy and autism on psychometric tests:

http://eprints.ucl.ac.uk/11879/1/11879.pdf

But you're right, this hasn't been directly demonstrated.

"Are you really arguing that autism does not cause insecure bounding or that children with autism don't have abnormal reactions to strangers?"

Abnormal reactions to strangers, yes. Insecure bonding, no. Contrary to what psychoanalysts thought, autism really has little to do with parent-child bonding. (I know this is a common misconception - I remember in the Autism Every Day video one parent seemed to think her child didn't care about her when the child was repeatedly hugging and cuddling her.)

"You are missing the main point of the theory. The main point and the part that caused the most damage was the idea that it was something that a parent did that caused damage to the child."

But parents *can* cause damage to their children. And contrary to parent-blaming stereotypes, most of this damage is done by loving parents who want to do their best. If parents are unintentionally harming their children, it'll help both parent and child to identity and treat the problem at hand, instead of just blaming it all on the child's disability. Whether or not the child has autism is something we don't currently have power to change, but we can help parents come to terms with the child's disability, as shown by this study:

http://www.nova.edu/ssss/QR/QR10-3/orme.pdf

Incidentally, I'm really sick of the black-and-white thinking many people have about parenting. Either you're a perfect parent who never does anything wrong, or you're a bad parent who deliberately and maliciously hurts your child. This dichotomy is cruel to both parents and children - parents are *people* and they're fallible like anyone else. No one is a perfect parent, but if you point out how fictional that is, people assume you're going for the other stereotype instead.

6:38 AM  
Blogger Rivka said...


""I know that is a popular idea but I have never seen this actually demonstrated."

Sorry, yes, I was overstepping my claims there. There are some findings suggesting that, however, such as the very clear distinction between psychopathy and autism on psychometric tests:

http://eprints.ucl.ac.uk/11879/1/11879.pdf

But you're right, this hasn't been directly demonstrated."
I don't know if it's been directly demonstrated, but all of my personal experience with myself and other with AS supports it.

10:29 PM  

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