Confused

My grandmother died recently. Not a big surprise, since she was quite old and sick, but the funeral today came with several surprises.

I didn't go. I didn't really know her, and I had class. But my parents came back eager to talk about what had happened, and it floored me.

A bit of background: My uncle physically and sexually abused his four children. My father found out and told the cops, and his family ostracized him for 'telling'. My parents got custody of his two oldest children (14 year old girl and 11 year boy), and both of them sexually abused me (I was 1-5 years old).

Anyway, my father and my female cousin (one of the ones who abused me) were both left out of the obituary. I knew why for my father, but I didn't know why for my cousin.

Apparently she told on her brother for abusing his kids. I'm amazed - last I heard she seemed to think abuse was OK. She and my parents hung out and were bonding as fellow 'black sheep'. Dad gave her his email, she wants to be back in contact.

She's not fine, apparently. She had a kid taken away by CPS, not sure the whole story. But she's better than I thought.

And now I'm wondering - should I talk to her? See if I can make peace with her? (Not the best way of phrasing it, but words are failing me.) Can I handle it?

She hurt me. She hurt me so much. Can we ever be at peace with each other? Might she actually apologize, and make amends?

I don't know what to do. I don't know what to think.

I'm crying now. I'm not sure why.

When They're Ready

One thing that makes raising an NT child easier is how many other people are doing the same thing, and have done the same thing, for as far back as history records. One way this shows up is in 'readiness'.

'Readiness' is, quite simply, when a child is equipped to handle some kind of transition in their life. For some transitions, of course, readiness is not a concern, because the child alone will make the transition - a good example is going from preoperational to concrete operational thinking. Evidence suggests that many preoperational 4 and 5 year olds are ready to make the shift at any moment, just waiting for the lightbulb to flash. But other transitions are initiated by parents, such as the transition from diapers to potty, and these are the ones for which readiness becomes a parental concern.

For parents of NTs, this question can often be easily answered by age. When is my child ready for solid foods? Around six months. When is he/she ready for toilet training? Two and a half to three years. When is she/he ready for school? Five or six years. When is he/she ready to be considered an adult? Sometime between 18 and 25 years old.

These ages are given by society - other parents, various 'experts', lawmakers and policy makers, etc. They're based on experience (both implicit and explicit) with many different kids, which has shown that most do fine if a transition takes place at a certain age. Sometimes, of course, they get the age wrong. (One reason psychoanalysts focused so much on toilet training was because many parents were training their kids really early.) Other times, the age actually changes due to changing requirements - as education has gotten more essential to good employment, we've scaled the age of adulthood up to make room for it. But in general, if most parents stick to the designated ages of readiness, they won't be far wrong.

With neuroatypical kids, though, these ages change. A highly gifted child may be ready to learn to read at 2 years, and when he isn't taught then, he finally teaches himself around 4 years old and ends up bored and frustrated in grade 1. A child with Down Syndrome may not have the understanding or self-control to stop using diapers until she's 5 or 6 years old - trying to train her at 3 would be like trying to train an NT 1 year old. A high-functioning autistic person may not have the organizational skills for independent living until he's 26 years old, and only then can he safely live alone.

So these parents are left with a challenge. If they stick to the standard ages of readiness, the child suffers - like the many autistic young adults who get kicked out of condemned houses because they don't know how to clean them, or the gifted schoolchildren who tune out and coast on the easy assignments in school and then fail university because they don't know how to work hard. If they try to figure out when their child is really ready, they're navigating uncharted territory, and life becomes a guessing game. Some parents get more guidance than others (such as the parents who post on DS forums asking when other DS children were toilet trained) but none of them get as much guidance as NT parents get, because we simply don't know as much about any developmental difference as we do about NTs.

I know some kids with developmental delays who haven't been pushed to their full ability because no one knew what they could actually do. I've seen others who have probably been pushed too hard, and who act out because they're tired of being asked to do things they don't understand. I've seen kids whose mixed skills trick people into assuming that their lack of readiness is actually defiance, or cause people to miss the readiness that's actually there. I've been a kid who kept getting lost because people thought that I should be able to take the bus independently at 11 years old, when I still struggle with that skill at 22. I've also been a kid who longed for something to make analyzing data easier at 15, and then at 21 discovered the existence of SPSS. (I could probably have handled entering university at 13 or 14 years old, if it hadn't been for my traumatic experiences in school.)

If most kids were like me, I know my life would have been easier. And one big reason is that everyone would know to start teaching me new skills when I was ready - not too early, not too late. I would have learnt that most of what people threw at me was stuff I could do if I worked hard at it. I couldn't have gotten away with tuning out so much of school, and I wouldn't have learnt to give up whenever a real challenge comes along.

Alas, no one disability is common enough for the wealth of knowledge that makes it all flow so easily. And even when you can find many kids with the same condition, almost invariably you'll find that they're more diverse than NT kids are. (Down Syndrome individuals, for example, seem to range all the way from borderline IQ to severe cognitive disability, though most are mildly-moderately cognitively disabled.)

So, what's a parent to do? Well, get really good at the guessing game, of course. Learn how to spot readiness and lack of readiness from the kid's behavior instead of their age. And get good at searching out whatever knowledge is out there, so they can use it to guide them.

Anger and Autism

Rieffe et al (2007) did a study into emotional awareness in autistic kids. It's well-known that autistic kids are unaware of other people's emotions, but there's much less research into their awareness of their own emotions - although alexithymia has been found to show a strong correlation with autism.

In this study, they asked high functioning autistic and NT kids, both with an average age of 10 years, to give examples of situations where they'd felt certain emotions, and then to imagine themselves in the situation of a story character and say how they would feel in that situation. The stories were specifically designed to elicit multiple emotions, such as a kid being told that his beloved cat is seriously ill but will be better soon.

They found that autistic kids were less likely to attribute multiple emotions to the story characters - 31% of autistic kids and none of the NTs responded to every question with a single emotion. This was attributed to delayed understanding of emotions, which I think is correct. After all, they've had much less opportunity to learn about emotions, since they haven't seen their own emotions reflected in others in similar situations. (It came as a big shock to me the first time I saw that, with an autistic kid I was working with.)

However, another finding they have does not seem to me to be due to lack of emotional understanding. When asked to describe experiences of single emotions - sadness, happiness, fear and anger - autistic kids were specifically less likely to acknowledge feeling anger. All NT children reported feeling happiness and anger, with 86% reporting sadness and 72% reporting fear (both groups consisted of 20 boys and 2 girls, so gender roles may be at play here). Among the autistic kids, all reported happiness, with 77% reporting anger, 77% sadness and 59% fear, anger being the only statistically significant difference there.

They suggested that predominance of fear reactions may lead autistic kids to overlook other negative emotions. Compared to the NT boys' resistance to reporting fear and sadness in themselves, this shows up as underreporting anger.

My interpretation is quite different. Maybe a subset of autistics really don't feel anger, or so rarely that it's hard to think of an example of it. Maybe those kids were actually the more self-aware ones.

I've been told that I'm quick to anger, and that my anger is explosive and frightening to others. When they say this, they're talking about my meltdowns. But the problem is: I'm never angry when I'm having a meltdown. In the vast majority of cases, I'm terrified. Sometimes I'm sad or hurt as well, sometimes I'm feeling numb. It's never anger. It looks like anger, behaviorally, but when I look inside myself, I can find another emotion hidden underneath, trying to pass itself off as anger.

In fact, the vast majority of situations where I think I've felt angry, when I look at it closer, I realize my emotions were something else. Fear is, by far, the most common imitator of anger for me, probably because the fight-or-flight reaction can lead to defensive aggression. When I lash out, I always feel like my life depends on it. It's always been irrational so far, but that's how I feel.

About the only situation I can think of where I feel anger not directly caused by another emotion is when I'm involved in activism on a situation that is not imminently affecting me or someone I love. And even then, the anger is fleeting, replaced immediately by sadness for those impacted by the situation or dispassionate intellectual analysis of the sociological processes involved.

Another reason I think I don't feel normal levels of anger - I've never hated anyone. Hate, from what I understand, is a form of anger that is strongly focused on one person or group of people over a lengthy period of time. I suspect it's necessary to hate in order to believe in evil people, too, because those who believe in evil seem to just point to certain people as obvious examples of it (suggesting they're going for an emotional reaction instead of a logical one) and because hate seems to cause lack of empathy towards the targets of hate, and I feel empathy even for the most twisted serial killers. Normally, this would only be possible if I didn't empathize with the victims, because the victim-empathy would elicit hatred towards their attackers. But in my case victim-empathy elicits mostly just sadness and occasionally a bit of fear.

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.

Times Are Changing

When I first started reading medical journals (mostly focusing on chromosome disorders), I was about 14 years old. Now, I'm 22. Therefore, I have personally lived through almost 10 years of medical history. As such, I've recently noticed some changes.

The first thing is a change in the style of the journal articles. It used to be that (not counting common well-described conditions like Down Syndrome) the vast majority of articles about chromosome disorders were single case studies. In other words, a group of clinicians writing about a single patient they had, while reviewing other single case studies of individuals with overlapping chromosome disorders in hopes of delineating a phenotype.

Occasionally, you'd see a different style of study, where doctors screened a large number of patients selected for a certain trait or collection of traits (such as cognitive disability plus physical anomalies) and looked for chromosome disorders in all of them. Then they'd give a sparser description of several cases who were detected as having chromosome disorders, as well as providing statistical data on how common chromosome disorders are in a certain category of patients. This kind of study, in the past decade, has become more common, until now it's the most common kind of study into rare chromosome disorders.

Another shift is in the 'chromosomal phenotype'. Originally, the 'typical' child with a rare chromosome disorder was felt to be an individual with multiple congenital anomalies and moderate to profound cognitive impairment. However, our technology for detecting chromosome disorders is more fine-tuned, and we can now find very small copy number variants - and many of these conditions show a milder phenotype than this. It's been long known that some individuals with chromosome disorders have mild cognitive impairment, such as the higher end of the spectrum for Down Syndrome. But now many people with normal IQs are diagnosed with chromosome disorders as underlying causes of a myriad of conditions such as dyslexia, ADHD, schizophrenia, isolated epilepsy, even simple depression. The 'chromosomal phenotype' is a whole lot broader than people used to think, if you include the smallest chromosome disorders.

These copy number variants show another quirk, which used to be rare among chromosome disorders but is found increasingly more and more often. This is when the same chromosome disorder present in an affected child is found in an unaffected parent as well. It used to be assumed that this was just coincidence - the chromosome disorder was a benign variant and the kid had something else as well. But large statistical studies show that many of these conditions are more commonly found in disabled populations than in normal controls. Given the individual variability seen in such well-described conditions as Down Syndrome, this could reflect a spectrum where the higher functioning end is indistinguishable from normal. Furthermore, many affected individuals have several unrelated copy number variants, whereas their unaffected relatives more often have only one, suggesting that there may be an additive effect between different copy number variants.

Another change, which probably results from sequencing the human genome, is that nowadays doctors can say things like 'the following five genes are included in this deletion, and here are the biochemical pathways impacted by those genes'. This means that even if there's never been a report of that particular deletion (or duplication) before, they could give a reasonably educated guess as to what specific impact the condition will have. If one of the genes is expressed in heart tissue, for example, then the kid might have a heart defect. (This is in contrast to the overly pessimistic 'kid will be profoundly retarded and die in infancy' stock prognosis that often used to be given for rare chromosome disorders.) There's also a database of copy number variants, called DECIPHER, that helps doctors find out if this particular condition has been seen before.

And lastly, attitudes are shifting. I've seen several articles in medical journals about the societal issues around rare genetic disorders, such as whether trisomy 13 and 18 survivors really do have a poor quality of life, how people with Down Syndrome feel about prenatal screening, or what life is like for parents who reject prenatal diagnosis or termination. Doctors are starting to get that their implicit attitudes about disability impact on the kind of care they give to patients, and not necessarily in a good way. They can be amusingly (and depressingly) naive at times, but they really are starting to get it.

I've seen a slice of history, and overall, I think I like what I'm seeing.