Abused/Traumatized Characters in Fiction

I see a lot of people portraying trauma and abuse poorly in fiction. Here are some of the common problems:

With Good Guys:

• Very Little Effect - a prime example is Harry Potter. He's got a big advantage over Voldemort because he's 'full of love'. Where did he learn that love? From his parents? They died before he could remember him. From the Dursleys? They abused and neglected him and made it pretty clear that they hated him. From teachers or classmates? Until Hogwarts, none of those people cared about him either. For a boy with the unpleasant life history he had, Harry Potter was surprisingly healthy psychologically. A more common example is how little the story's events usually affect the characters. There are people they know dying all the time, they face their own death on several occasions, maybe experience torture, but they still act like a carefree kid a lot of the time. To get an idea of what living through those kinds of things is really like, talk to anyone who's lived in a war zone (soldier or civilian).
• Instant Healing - this is where a character has some kind of trauma, and for 10 years or whatever, they've shown a certain dysfunctional pattern as a result. Yet one transformative experience cures it overnight. A few stories stretch it out awhile, but very often it's still too brief. Or maybe they've recently experienced something traumatic and are showing symptoms, but something helps them deal with that and they instantly go back to being who they were before the trauma. Well, guess what? Healing from trauma is long and hard. You'll go through a great deal of pain, you'll come back through the same stages over and over, and maybe, years later, you'll finally be able to consider yourself to have healed. Only to realize you've still got wounds. And when you finally are healed, you will not be like you were before the trauma, or would have been without the trauma. It's not possible to undo something that happened to you, all you can do is integrate it into your life experiences in a healthy way. A series that portrays this really well is The Hollows by Kim Harrison - one of the major characters is a vampire who's experienced some pretty serious abuse, and throughout the series, she is gradually healing. As of the latest book, she's still clearly got issues, but she's not nearly as prone to unexpectedly attacking people as she was at the start of the series.
• 'Good Guy' Trauma - This is another thing Kim Harrison managed to avoid. A lot of characters, if they actually seem affected by their traumatic experiences, show it by depressive episodes, bad dreams, acting scared of certain things, etc, but never in a way that could actually make them likely to harm someone else. Sure, there are some traumatized people like that, but there are also traumatized people - who have good intentions, and are basically good people - who have explosive rages, misinterpret situations in a dangerous way, and so on. My Dad said when he was growing up, everyone knew not to take certain veterans hunting, because they'd start thinking they were back in the war. It's easy to feel sympathetic for the person sobbing xyr heart out because xe never realized just how much xe wanted the motherly love xe never got. It's much harder to feel sympathetic for the person who has pinned you to a wall and is demanding that you prove that xe can trust you, but that's just as much a part of being traumatized.
• Normal Standards - one of the most pervasive and damaging effects of trauma is how it changes your view of the world. But so many characters seem to be perfectly aware that what they went through is not OK or representative of what they can expect from life, even when they really had no way to find that out. An abused child who never got any sympathy from anyone for being abused, yet somehow knows that what they went through was abuse is a prime example. Real abuse survivors often blame themselves for not being able to cope, or being 'bad' and making their parents hurt them, or not being able to stop the abuse (my cousin seemed to think it was plausible for a 4 year old boy to be able to beat up his own father). Or they may think the abuse had no effect on them when it clearly did, or think the effect was positive. Then there's how they view the abuser. It's possible for an abused person to honestly care about their abuser (part of what makes it so agonizing). They may be able to see the good points in the abuser as well as the bad - if the abuser is a parent, for example, they probably did some things right in order for their child to even be alive. They may be aware that the abuser's life isn't easy either, and feel sorry for them. They may have been so dependent on the abuser that they had to care about the abuser or else they wouldn't have survived.

With Bad Guys:

• Dark Lord Was Abused - this is where the bad guy is given a backstory of abuse as a replacement for actually trying to explain xyr behavior. There are two big problems with this. Firstly, it often carries the connotation that abused people automatically become bad, especially if there are no other abused characters. Secondly, the standard villain types often don't act like abuse survivors. The biggest thing is that they have too much fun. If you're going to make them an abuse survivor, make them unhappy. It seems obvious to me, but there's the gleeful cackling evil guys with histories of abuse to prove that people can miss this. Thirdly, it still doesn't explain why they act the way they do. Let's say a boy grows up with regular beatings and no one who really loves him. Why would that make him decide to create a doomsday device? You can't just say 'because he was abused' and leave it at that. You should work out the chains of logic there. Maybe he thinks every child suffers as much as he does, and feels that he's doing them a favour by killing them all because they won't have to suffer anymore. Or maybe he wants to destroy all the people who've wronged him, views the whole world as having wronged him because no one stepped in to help him, and thinks everyone deserves to die. Or maybe he isn't really trying to destroy the world, but hoping that making this device that could do that will get everyone to finally see how much pain he's in and force them to care about that. It has to make sense from his perspective, however warped that perspective is. Best if you can get people to empathize with him and really feel sorry for him, even as he's putting the whole world in danger.
• Abusive parents - if you're going to have any development of the abuser whatsoever, you need to make them have more depth than just being bad guys. What they're doing to their victim makes sense to them. They have reasons for doing it. Maybe they snap under too much pressure or when their buttons are pushed certain ways, and then feel terrible about what they did. Or they honestly think they're doing the right thing (see 'Normal Standards' above for why an abuser might believe that). Or they might not care about the child or want to hurt the child - but I recommend limiting that, because it seems to me that most abusive parents actually do love their children.

Causation and Affected Siblings

There are three basic ways a condition can be caused:
a) genetics
b) physical environment (diet, injury, etc)
c) psychological environment (parenting, school experiences, friendships, etc)

A lot of people, however, narrow it down automatically to genetics and parenting (nature vs nurture) with 'psychiatric' conditions.
And many of those people also use illogical arguments regarding the presence or absence of similarly affected siblings. It's most commonly used to rule out a cause. But I've heard people say it must be genetic instead of due to parenting because the child's siblings are unaffected, and I've heard the exact opposite.
The truth is that whether or not siblings are affected doesn't really tell you about family-related causes, of which both genetics (excluding random mutations) and parenting are included (and people so often forget that not all conditions are caused by either of those two). Both of those tend to make siblings more similar, but can also account for differences between siblings. The only way to distinguish parenting effects from genetics by studied affected status in siblings is to use twin or adoption studies, and even those don't rule out parenting effects (with twins, identical twins are often treated more similarly than fraternal twins, and adoptive parents may raise a child differently based on what they know of the child's biological parents). The presence or absence of affected siblings doesn't tell you whether it's more likely to be due to genetics or parenting. All it does tell you (and this is not absolute) is how likely the condition is to be due to familial as opposed to nonfamilial effects.
Here are some examples:
A boy is severely depressed, extremely shy, flinches at sudden movements, and doesn't play with other children. His siblings (all brothers) are all apparently normal. The boy I'm thinking of is David Peltzer, author of A Child Called It, whose condition was due to parenting - despite having unaffected brothers. His condition, PTSD, was due to having a sadistic mother who picked one child as a scapegoat and doted on the rest. His brothers actually weren't completely unaffected, but their problems were milder and less obvious, since they were witnesses to violence rather than victims (except for one boy, who became the new scapegoat when David was put into foster care).
A boy is developmentally delayed, hyperactive, and bites his hands when nervous. He talks fast, with odd stressing, and gives strange tangential replies to questions. He has an unaffected brother and sister. This boy is a made-up kid, although I'm sure someone meeting his description exists. His condition, Fragile X Syndrome, is an X-linked genetic condition that his mother carries. His brother didn't inherit the same gene. His sister may have, but if she did, she's an unaffected carrier like her mother - or at most, a mildly affected Fragile X girl who may not be recognized as different, especially compared to her obviously disabled brother.
And then there are the myriad examples of similarly affected siblings, either all raised the same way or all inheriting the same genetic trait. And even more examples of families where two or more siblings are affected but at least one isn't. With genetics, this can be due to not inheriting the same gene or differential effect of the gene due to other genetic traits such as gender. With parenting, this can be due to parents' different reactions to a girl rather than a boy, a first-born child instead of a second-born child, a child with one temperament instead of another, or many other factors. For example, a common pattern in families with a sexually abusive father is for unaffected boys and girls with PTSD, because most male sexual abusers prefer to abuse girls.
If you are theorizing about the causes of a condition, stop assuming that affected or unaffected siblings tell you if the cause is genetics or parenting. Both causes of conditions are compatible with both affected and unaffected siblings.

Late Mother's Day Post

I meant to post this right after mother's day, but other stuff intruded. Anyway, here's a poem I gave my mother on her mother's day card:

"So many parents long for a child different from their own.
You love me as I am.
So many parents hope that if they pretend evil does not happen, it won’t affect their child.
You stand by me in my pain.
So many parents try to change their child to fit the system.
You try to change the system.
So many parents listen to what experts say about their children.
You listen to me about myself.
So many parents love their child, but don’t really like them.
You like and love me.
So many parents think they are the biggest experts on their child.
You know that only I can define myself."

Post-Psychotic PTSD

I just found an interesting article here. I can't read the full text, but here's the abstract:

"This paper examines the aetiology of postpsychotic posttraumatic stress disorder (PP/PTSD) symptoms in a sample of participants who had been hospitalized following a psychotic episode. Forty two people hospitalized for a psychotic illness were interviewed during recovery to investigate whether a psychotic episode was associated with PTSD symptomatology. All participants found psychosis and hospitalization highly distressing. PP/PTSD symptoms were not associated with demographic factors, previous trauma, treatment, or insight. The PP/PTSD group reported more distress and intrusive memories associated with illness and treatment experiences and had higher scores for anxiety and dissociative symptoms. The development of PP/PTSD phenomenology was associated with the psychological distress of the experience."

My Uncle Is Dead

My uncle was found dead a few days ago. The cause is not yet known. I'm not sure how to feel about it.
I never really knew him. I saw him as a baby, and once a few years ago at another relative's funeral, but my parents have minimised contact. However, I feel like I'm grown up with his ghost.
He was the one whose daughter disclosed sexual abuse to my parents, and whose children were taken away. It was two of his children who came to live in my home when I was 10 months old, and abused me until the last of them left when I was 5 years old. He also sexually abused my father when they were growing up, and had a long history of conning and emotionally abusing others.
Although my cousins chose how to cope with the abuse, had it not been for having been abused, they would never have abused me. Psychologically healthy 11-16 year olds do not sexually abuse preschoolers. Except for a very small minority (such as true pedophiles, who likely have a hormonal problem), all youth sexual abusers experienced serious abuse themselves.
There's little evidence that my uncle changed his ways. We don't know if he continued to sexually abuse others, but he was still conning and emotionally abusing others up until his death, and he showed no remorse for abusing his children. He had access to several of his grandchildren, from his three oldest children. (The youngest of the three, unlike all his siblings, shows no sign of being abusive, so the biggest risk to his child was his inappropriate trust of his father.) His death, mourned by some, may be the end to ongoing abuse for others.
So, if I'm not too sad about his death, it's understandable. But in a way I am sad. He didn't have much of a life. He wasn't a very happy person. He had talents which he never really used in any beneficial way. He never learnt that he could have a better life than he did, if only he changed his ways. My father says if he'd outlived his mother and sister (both of whom enabled him and supported him a great deal) he might've finally made some good changes, but he'll never get the chance now.
And he was my father's brother. My father loved him. He was kinder, in many ways, than his sister, and taught my father things. Though my parents cut contact with him when they found out he'd abused his children, my father continued to love him. Just like I love his son, despite all the abuse.

Counselors for Neuroatypical People

I'm autistic and also have PTSD (post traumatic stress disorder). The latter is something I've often received counseling for, but sometimes the fact that I'm autistic and most people aren't gets in the way.
There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.
I had a counselor like this. She was a hard of hearing woman with much experience counseling autistic people. She was firmly of the opinion that anyone who was different in any way should try their best to conform. (One of the first signs of this may have been when I innocently commented, upon her saying she was hard of hearing, that I'd noticed she had a slight hint of the 'deaf accent'. She seemed dismayed.) She kept nagging me about stimming and decided my biggest current problem was that I was homeschooled, and she must find me a special education placement. I spent my entire time with her arguing and treating her like an embodiment of one of my teachers.
It's been noted by many autistic people that autism 'experts' really don't have a clue about what it's like to be autistic. The worst thing is that they think they do. So if you try to tell them they're wrong, they often won't listen. They'll sometimes even try to tell you how you feel, as opposed to how you really feel. In my experience, also, they're prone to view autism as a problem, rather than accepting that I really am fine with being autistic.
The second type is much preferable. This is the type I usually have. Generally, they are people who specialize in trauma or more specifically sexual abuse, who, unlike autism experts, really do understand the people they specialize in treating (because the literature on trauma and recovery is much more informed by actual trauma survivors than the literature on autism), and though they know even less about what it's like to be autistic than most autism experts, they know they don't know. This means they are teachable, because they accept that I actually know more about what it's like to be autistic than they do.
However, with the second type, I spend far too much time trying to teach them, and every bit of advice they give is generally aimed at neurotypical trauma survivors, and therefore may not apply very well to me. The biggest problem is that I don't always know how to tell if it applies or not right away, and if it doesn't I can't necessarily explain why. I found it very difficult, for example, to explain why cognitive behavioral therapy does not apply at all to me (I tried to explain why in this post).
Oh, and by the way, here's a survey about emotional experiences:
Click Here to take survey

Murder of Kids With Attachment Disorders

This is another category of kid who are often murdered by caregivers. Reactive Attachment Disorder (RAD) is caused by a) living in an environment unsuitable for attachment, such as with an emotionally neglectful parent, and/or b) losing a primary caregiver, such as with foster or older adopted kids. These kids have serious difficulty trusting others because they either lost or never developed the basic expectation that their parent will always be there and help them. As a result, they can have serious behavioral problems and often don't give parents the same kind of 'rewards', such as expressing love and trust. Some parents end up killing these kids. Here's some news stories about this:
http://www.newsweek.com/id/74385/page/1
http://www.ratbags.com/rsoles/comment/candace.htm (this one about an abusive therapy)
http://www.salon.com/sept97/mothers/renee970930.html

Don't Hit Them When They're Down

On the Autism Speaks forum, someone posted saying he hated being autistic and wished he'd never been born, and advising parents with a high likelihood of having an autistic child to avoid having children. Another autistic person replied by attacking him and when scolded for that by another person, pointed out how serious the implications were of what the first person had said.
My instinctive reaction, when hearing an autistic person saying they think autism is a bad thing, is 'Oh, no, what will the curebies make of this?' I suspect that was why the other autistic person attacked him for saying that. Statements like that by an autistic person can literally cost people their lives.
A similar problem was described in the book The Courage to Heal regarding ethnic minorities. A Jewish woman and a Latina women both described being afraid to admit that they were sexually abused by their parents because they worried it would feed into negative stereotypes of their people. Muslim women have been discouraged from discussing spousal abuse for the same reason.
But we can't attack the victims, nor can we pretend there's no problems and no diversity of opinion. We can't censor people. I know I feel the temptation sometimes to pretend I have no problems, or that my problems are all unrelated to autism. But doing that leaves my problems unsolved, and feeds into the idea by curebies that 'we don't know what real autism is like'.
I've never connected this with autism, but I've certainly felt like a terrible, worthless person on occasion. I have not found being angrily contradicted and told that I shouldn't say those things helpful. Even worse is people agreeing with me. What works is to reach out to me and tell me that I'm a valuable person and that things won't always be so bad for me. Here's an example of the three ways to reply:

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: You're right. You are a terrible, worthless person. Don't worry, we'll find a way to make you worthwhile.

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: How dare you say such terrible things! No one is terrible or worthless. (except maybe you, the depressed person hears)

Depressed person: I'm a terrible, worthless person and I wish I'd never been born.
Other person: It's so sad that you feel this way. I am convinced that everyone is valuable, including you. I wish you could see how valuable you truly are.

There is no definite way to help someone like that feel better, but the last choice is the one most likely to work. Note that the last two choices both involve disagreeing with the person, but the last one diagrees by affirming the person's worth, which feels much better than being scolded for expressing yourself. It's important to remember that people who say such things about themselves usually have a long history of being criticized for things they say, do or are. That's why they feel that way. Intellectually, choices 1 and 2 are quite different, but the emotional impact is similar, and someone denigrating themselves is not speaking from intellect, but from emotion.

Ransom Notes campaign

NYU Child Study Center has an awareness campaign called 'Ransom Notes'. Here's what I emailed to them in reply.

On your webpage, I noticed the 'Ransom Notes' awareness thing, with stuff about ADHD, Asperger Syndrome, Autism, Bulimia, Depression and Obsessive-Compulsive Disorder.
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I'm more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like 'being kidnapped'. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I'm fine.
Portraying conditions like Bulimia, Depression and Obsessive-Compulsive Disorder as kidnapping a child is a vivid analogy for how it really does feel to have those conditions (I'm basing this off of both personal experience and personal accounts I've read by other people). Portraying conditions like Autism, ADHD and Asperger Syndrome as kidnapping a child is offensive to those affected by those conditions, and encourages others in an erroneous and harmful perception of them. That's not the kind of awareness I'd like. In fact, treating fundamental brain differences like they are separate from the person and a terrible thing is part of the reason I have PTSD (I experienced abuse in two very distinct settings, one of which was well-meaning but very harmful abuse from my teachers, who thought my differences were something wrong with me).
Worse, your descriptions of what the supposed 'kidnappers' are making the ADHD, autistic and aspie kids do is offensive as well. ADHD behavior is only a problem in certain circumstances. Studies have shown that if a teacher is highly engaging, less children meet behavioral criteria for ADHD - because ADHD kids are not incapable of paying attention, they just need more stimulation. And the idea that it's a detriment to others is a concept frequently used to justify treatment that harms the recipient or at the very least doesn't benefit them. It's justified with abusive behavior, but it is not justified when the person is merely acting annoying or weird.
Regarding the ability to interact with others, I have yet to meet a single child, with any disability, who was incapable of interacting with others - including many much more disabled than any autistic kid. I know one boy with severe CP who can barely move and can't speak, but he looks at things and groans to communicate. Interaction is a two-way street - he can't interact with someone who ignores him, but that's not really his inability. And social isolation, firstly, is in the eye of the beholder. It's likely in the month of December I will only spend one day with anyone else my own age. But I'm not lonely - I don't need interaction that much. Other times I do want friends, but no one wants to be friends with me. That is not a social impairment on my part, but their own intolerance of diversity - after all, openly gay teenagers often have trouble making friends too.
As for caring for yourself, who in our society really is independent? Apart from hermits living off the lands (ironically, many of them are probably on the autistic spectrum) no one is. But only if you're dependent in the 'wrong' way does it ever get noticed. My father can usually fix his own car. Most people can't, so they hire a mechanic. This is not considered a disability. Most people can tell time within about an hour or so, and can certainly tell when mealtime comes. I can't (in the absence of external cues). This is considered a disability. In another society, however, it might be the opposite.
Ettina

If I'd Had ABA

[Note: ABA stands for Applied Behavioral Analysis, a common therapy for autism that has some serious ethical concerns associated with it.]



I've been reading a commenting on a book about ABA treatment for autism, that I got free in a conference. I have also worked as an volunteer in an ABA program, and been the recipient of treatment from my teachers which differed from ABA mainly in being less effective at reaching the intended goals. (For example, they never grasped that being sent home from school when I misbehaved wasn't an effective punishment - it must be time-out from reinforcement, not time-out from constant conflict, in order to be a punishment.)

My autism was diagnosable around when I was 6 or 7 years old. (However, I wasn't actually diagnosed until I was 15.) Here's my suspicion of what would've occurred if I had received ABA therapy at that young age.

I would've been considered seriously non-compliant. My instinctive reaction to someone trying to control me is to fight them on almost everything. I even developed an aversion to using a tissue to blow my nose because it was so incredibly important to my teachers.

They would've put me on a program to encourage compliance. What they generally do, according to my book and the head of the program I volunteered at, is to increase rewards and start giving orders that are very likely to be followed. I would most likely have resisted those, developed an aversion to whatever rewards they did and refuse to obey any command of theirs even if it was something I wanted to do. If they told me to eat some chocolate I might've even refused, or if I obeyed it would be despite their command. (And I'd feel bad about it afterwards.)

If it was a reward that was only available when I complied - as is recommended - then I'd definitely get an aversion to the reward. In my mind, it would be linked to the power struggles. So anything I actually liked about it would probably be neutralized by them using it to reward me. This has happened with things the school got me to do, like skating. I used to enjoy skating before I went to school, but after a few times skating with my school I hated it.

If they followed the ethical standards laid down for ABA, I doubt they'd have ever gotten me to comply more than rarely. Letting them control would've felt worse than missing out on the rewards. If they used painful aversives, maybe they could have broken me. And I use the term 'broken' advisedly - it would've been the same psychological thing as breaking someone in torture. Indeed, ABA with painful aversives (such as the Judge Rotenberg Center does) is pretty much indistinguishable from torture. The few times I gave in, I held out in my mind, thinking intensely to myself about how much I disagreed and feeling very helpless and angry and disgusted. It was awful.

There might have been moments that were good. Moments where they seemed to become a different person from the one constantly pressuring me to comply. I know I was not myself when I worked in ABA. I had a fake persona of 'ABA therapist'. Some people say ABA makes kids robotic - I think the therapists are more robotic than the kids. (Ironically, behaviorism has no way to explain the behavior of behaviorists.) If the therapist ever let his/her mask down, I'd probably have treated them like two distinct people - the ABA therapist and whoever they really were, who'd probably be a nicer person, at least from my perspective.

Certainly ABA would not have helped me. But I'd have been lucky, because I would be more myself than most autistics who get ABA end up. I'm an idealist and a rebel, like Kestrel in The Wind Singer. Kestrel rebelled against the rigid rules of her town Aramanth, I rebelled against the rigid rules of my school. Neither of us bend - we stay rigid unless it's strong enough to break us. People say it's better to bend than break, but those who bend are damaged more by mild abuse. Those who don't bend until they break are less damaged by anything which isn't strong enough to break them, but more damaged if they are broken.

However, ABA generally requires parental consent. My parents were a major source of strength for me because they stood by my right to be myself, and didn't want the teachers to change me into their mold. So had I been diagnosed younger, I still might not have gotten ABA because I doubt my parents would have accepted their opinion that I had a problem. (After all, they didn't when my principal said I was AS when I was 12.) But if they had, I'd have known my parents agreed to this. I'd have known it was their choice. I might not have resisted then - after all, it's much harder to write off your parent than your teacher.

What is Relaxed?

The current blog carnival theme is 'how do you relax, unwind'. I kept putting off writing my entry, because I wasn't in the right mood to think about relaxation. But I just realized I could talk about why it's so hard for me to relax.
Firstly, I have PTSD, and by definition, PTSD impairs relaxation. Having had something terrible happen to you makes you on guard for anything else like that. So relaxing is difficult, because I just don't feel safe easily.
In addition, society is constantly bombarding me, as a target of discrimination. When I'm reading, listening to the radio, talking with someone, or basically anything that involves receiving communication from others, discrimination can come up and hit me out of nowhere. And it does feel out of nowhere. If someone means to hurt your feelings or be cruel, usually you can see it coming. You're having an argument, they're angry at you, whatever. But if they assume everyone agrees, and rather than being deliberately offensive they are stating the truth as they see it, or even trying to be nice, then it comes in a friendly context, when you're starting to feel safe around them. And they might not even know I'm autistic, in addition to not knowing they're discriminatory.
So relaxing isn't easy. The few times I've felt what I think is called relaxed, it sneaks up on me. I suddenly realize that I feel safe. I often feel safe home alone with only my cats for company, but even so my triggers lie there lurking, able to shatter that calm. Sometimes I feel safe with my parents, but if they say or do the wrong thing I get triggered. Occasionally, I feel safe with my brother, but if he pesters me a bit too much that suddenly disappears. Once, I felt safe with people I'd only just met - a youth group of developmentally disabled people, among whom I no longer felt different. Feeling safe creeps up on me slowly, yet disappears suddenly.
When I realize I'm getting too upset and need to relax (usually late in the build-up of my stress), I don't know how to relax. What do I do? What is relaxation anyway? I honestly don't know what relaxation means or how to achieve it when I'm upset. Instead, I continue quietly teetering on the edge of meltdown until either something sets me off or (less often) I accidentally calm down somehow. I can't keep going on this way, I need to learn how to relax so I'm not constantly having meltdowns anymore.

Resilience

The next Disability Blog Carnival theme is Resilience. I think I can write about that. Isn't resilience central to PTSD?
I don't think I'm a brave person, but my mother says I am, because I stand up for myself so strongly. But the thing is, I've usually been absolutely terrified as I do so.
I stood up to my teachers, refusing to submit when they tried to make me reorder my mind for their convenience. I fought the system any way I could. The thing is, I was terrified the whole time. It's just that giving in hurt worse than fighting back. That, and my hope that maybe I'll break down a barrier for the next person (or at least dent it somewhat). I don't know if my resistance is doing any good, but giving in sure won't.
I may have even stood up to my cousins when they sexually abused me. I suspect they pressured me into cooperating with the abuse - part of why I'm terrified of giving in.
Since I've left school, I've stood up for myself and others many times. I've advocated on the internet, even wading into the vicious yahoo group EOHarm to tell them they shouldn't be insulting autistics. (I was viciously flamed, but got several private e-mails from people who agreed or were at least more open to listening to me.) I've told advocates for the Judge Rotenberg Center how it really feels to be treated with that kind of force (although my experience pales by comparison to JRC). That's scary because I have to let myself feel pain in a situation which is most definately not safe. I've watched part of the hateful Autism Every Day video and wrote my criticism of it. (And felt bombarded by hate and had a terrible emotional flashback as a result.) I've told parents that their attitudes are harmful to their children, scared of being flamed but feeling such painful compassion for their children that I had to.
I've also 'stood up for myself' in harmful ways. I've yelled at my family and hurt myself. I even hit myself on the head with a glass bottle recently. I can't give in without rejecting myself, I can't accept that they aren't my enemy, I'm trapped. I've wished I could die or just disappear. I've felt that people would've been better off if I'd never been born. I've despaired of ever living a good life, achieving anything of worth or making a positive change for disabled people. I don't feel very resilient or brave.
I've fought the world alone because I don't recognize my allies or don't see them helping. I've wondered if I'm the only one who sees this (whatever 'this' is) as a problem. I've wondered if I'm stupid or overreacting to think it's a problem. I've wondered if everyone else is just nasty and mean or if there are any good people in the world. I don't feel very resilient or brave, but to keep fighting like this, I guess I must be.
And I've held on to hope. I've kept trying to recognize and find allies. I've kept hoping I can change the world for the better. I've kept trying to help the kids like me, who I feel such painful empathy for. I've kept trying to heal from my wounds even though I don't really believe I can heal. I've survived, although I don't know how brave that is because I can't bring myself to cause serious harm to myself even if I try.
[Edit: I thought of a good way to sum it up: I'm blazing my own trail because the standard ones are blocked.]

Disability Blog Carnival

[Rewritten because I lost my internet connection - I'm on a poor-quality wireless connection right now.]
I missed the disability blog carnival again. Last time I wrote something late for it. I don't know if I'll do it again, because of the old familiar shame and fear of seeming stupid linked to many of my autism-related problems. It's hard to even mention this because my usual strategy is to ignore or dismiss mistakes. Saying openly that I feel bad about making a mistake is hard, unless I 'flick the switch' for an attack of self-hate.
I put a thing on the bottom of my blog which may help me remember in the future (of course, I might forget about it. Maybe I'll move it somewhere more visible).

Emotional Differences

Firstly, I'll just mention that a couple weeks ago I developed really bad joint pain. Shortly afterwards I had a bad asthma attack and ended up in emergency. They gave me a temporary prescription that helped me breathe but made it very hard to sleep, and now I'm on an inhaler which also helps me breathe with less (but still some) insomnia. And the day before yesterday I developed some kind of pain in my right arm that really interferes with typing, but seems to be gone for the moment (I hope). All that interferes a lot with blogging. [Note: Actually, it appears the earlier medication may have been slow to get out of my system, because the insomnia has steadily decreased until now I'm sleeping about as well as I usually do (which is mild difficulty falling asleep).]
Anyway, I've been getting counseling lately, with a psychologist who specializes in sexual abuse but knows very little about autism. Fortunately, she knows it, unlike many autism 'experts', so she's teachable.
Anyway, the second-last session I had, she was trying to give me a piece of advice which I could tell didn't apply to the kind of mind I have, but whenever I tried to explain, her reply made it clear to me that she was misinterpreting my response in the framework of an NT mind. The situation was this:
Many sources will say that in attacks of self-hate, you need to identify the thoughts that are triggering that feeling. I've also heard that if you can replace 'I feel' with 'I think' and have a sentence that makes sense, then it's not a feeling, it's a thought.
I don't know if this is true for NTs, but it's not true for me. But I can't really explain how it isn't true. Attacks of self-hate are triggering by a brief flash of a feeling, sometimes loosely linked with a picture. The feeling is of people watching me and judging me. But I don't think "People are watching me and judging me". It's like I feel the 'essence' of eyes staring at me in a judging, disapproving way. I very often have feelings like this, which are emotions combined with a kind of tactile 'essences' sometimes accompanied by visual images. There are no words to it unless I try to articulate how I'm feeling, and thereby place words on it. It's like saying 'I see a cat' in response to visual and tactile fur, raspy tongue, vertically-slitted pupils in green or yellow eyes, pink nose, etc moving in a cat-like pattern. The experience of interacting with a cat is not words, you simply put words on it.
So I was trying to describe this to the counselor, and not being very successful. And it was especially frustrating because I knew she was trying to help - I couldn't just think 'she's against me' and stop trying to explain. And I didn't really understand it myself (I still don't, but my understanding of it has shifted into relatively greater clarity while I was thinking about other things).
So she was giving me advice, and I just started staring at the ground and thinking 'If I don't say anything, she'll stop talking eventually.' I was trying to block it out. But this time, rather than just shutting off any positive relationship with her like I tend to do whenever I have problems with someone, as soon as she finished talking I told her what had happened. And so she dropped the issue for awhile, and we got it to some degree of resolution. We talked instead about my self-injury, and I decided to try to stop hurting myself. (And except for one meltdown - described below - and a few very fast unthinking hits on my head, I haven't hurt myself since.)
Later that day, I had a meltdown where I was screaming at my parents to 'listen to me' and trying to explain how I felt while working around my rigid mental rules of psychological self-defense that trap me during meltdowns. As usual, the result wasn't making much sense, particularly because we were all upset. I kept telling them they didn't care about me because if they cared about me they'd listen to what I was saying and their replies - making it clear they didn't understand - were proof they weren't listening.
And suddenly I realized that I'm very triggered by not being understood. Since only 1 out of 100 people is autistic and there is extreme variation in autism, this is particularly unfortunate. But that's probably a big part of why this is a big issue for me - all my life, and especially in school, I've been misunderstood and misinterpreted. In school they used it as a form of emotional abuse, but even caring, well-meaning people who've known me all my life find it hard to understand how I think. And a big part of the problem is that the vocabulary for describing mental states has been designed by NTs for describing NT minds, and so every word is basically an analogy for what's going on in my mind, rather than The Word for it.
I think I'll try to become a researcher into autistic emotions when I'm older, if I can. Michelle Dawson's articles about autistic thought describe my mind much better than the other research into autistic cognition (most of which only makes sense to me if I try to imagine observing myself with no understanding of how I think). If I could do the same for autistic emotions, that would be a big help. And trauma in autism in particular. I just wish the research I'm planning to do had already been done, so I could benefit from it.

Bullying a 'Benefit' of Inclusion

I just found a quote in a book that makes me angry. The book is Schooling without Labels, by Douglas Biklen. At one point, he quotes a parent to illustrate one of the 'benefits' of inclusion:

"I think no matter how severely retarded or handicapped kids are, they are not dumb. I think they really can perceive themselves in relation to other people around them. Peers exert a lot of pressure on each other. Some of that is positive and some of it is negative. I have heard kids in Ben's class say to him when he is doing something that looks dumb, 'That looks dumb.' Now he may repeat [the statement] 'that looks dumb,' but he is also more likely to stop. If kids stay away from him because he is doing something that looks stupid or hurtful, he is aware of that; he doesn't like to be alone. So he will make the effort to try to stop because he wants to be with the kids."

What is good about that? So he may try harder not to self-injure (one of the 'dumb-looking' things this boy did). He is also learning to hate himself and strive to become someone he will never be. This is an extremely damaging lesson to learn and in fact should be considered a disadvantage of inclusion.
Because of bullying, I lost my pride in my physical abilities. I'm flexible and can sprint well, but I have poor hand-eye coordination and balance, can't coordinate my movements with other people or other external things, and tire easily. I never felt bad about that when I was young and in fact enjoyed physical education class and got plenty of exercise. Now, whenever I try to exercise, I feel ashamed of myself - so I avoid exercizing.
Because of bullying, I learnt to supress emotional expression. When my brother is annoying me, I show no reaction until I reach my limit and yell at him. When you are around people who care about you, hiding your emotions harms you and them. The only way it is ever helpful is that when you are being bullied, it can shield you from some harm sometimes.
Because of bullying, I am scared to stim in public. I talk to myself a lot, but I automatically lower my voice or fall silent when someone else comes near. I supress excitement rather than jump and flap my hands, which is my natural expression of excitement. As a result, I don't feel the excitement. I automatically put on an NT front when I'm talking to any non-adult older than 10 or so, unless they're disabled enough that I don't think of them as teenagers. This front means not talking about anything that actually interests me (or else I'll 'talk too much'), being evasive about things like why I'm homeschooled or whether I have crushes, and many other things. It is exhausting to put up this front and it means I can't develop a true friendship or really care about that person.
And this is supposed to be a benefit of inclusion?
Ettina

Interesting Information on Punishment

[Note: This is the Second post I've made today.]
I'm reading a book called Treatment of Behavior Problems in Dogs and Cats. What it's about is evident from the title. The author has the annoying habit of assuming that the animal behaviorist is always right when they and the owner disagree, and says people would be more likely to get rid of a cat whose marking is damaging their rugs than the rugs themselves (whereas I'd much rather have a marking cat and hard floors than get rid of my cat), but I really like his section on punishment.
One of the things he says is:
"Laboratory experiments and everyday experience indicate that the most likely effect of punishment is to produce only a temporary suppression of behavior. Behaviors which have been apparently eliminated with punishment methods alone tend to recur again and again in the future... Under special circumstances, punishment can sometimes be successful in producing long-term suppression of behavior. But here the punishment must be of traumatic or near-traumatic intensity, which makes it undesirable on both ethical and practical (i.e. side effects) grounds."
I wish the Judge Rotenberg Center would read and understand this. If they claim it's not traumatic to zap people for misbehaving, therefore it has only a temporary effect. If it is effective long-term, then they must be traumatising them. Incidentally, some people, like myself, tend to react to some punishments by consciously trying increase the behavior, and when that occurs, only traumatic punishments have even a short-term effect, and often only very severe ones (for example, I think I would comply if I was threatened with death for disobeying). The punishments school threatened me with were traumatic but not severe enough to stop the behavior I was desperately clinging to. I felt like if I let them win, I'd lose my self, and those are pretty high stakes.
Another thing he says is:

Punishment can have the side effect of eliciting aggressive behavior if it is painful, elicits fear in a fear-aggressive dog, or is seen as a status-threatening challenge by a dominant aggressive dog.

The shocks used by the Judge Rotenberg Center are painful. No wonder aggressive behaviors tend to be more common after a child is zapped. (For example, Linda Cornelison was apparently only aggressive when she was shocked.)

As a side note, here's something he said about medications:

Hart and Cooper (1996)[*] raise the more basic question of whether it is ethically justifiable to administer a psychoactive drug to an animal without altering the underlying factors which are causing the problem - above all in cases where the symptoms tend to recur after discontinuation of the drug and, therefore, it might be necessary to administer the drug to the animal indefinately.

I wish my school had a) read this, and b) recognized how much they were causing my 'misbehaviour', rather than insisting that everything would be fine if I got Ritalin. (Which was probably inaccurate anyway, since much of my behavior was because of anxiety and therefore would be worsened by a stimulant.)
Ettina

Planning for Support or Avoiding the Pain?

Quite awhile ago, I decided to write a post about the horrible Autism Every Day video. It was really upsetting me, but as long as I was watching and writing responses I barely noticed my feelings. Then we had to go, and I left it unfinished, planning to finish it shortly afterwards. As I posted soon after, though, I had a meltdown that night because of all the unhappiness I'd been pushing down.
This was in summertime. It's almost 2007 and the post I planned to finish at my next opportunity is not finished, and many other posts have been made. What happened? I decided to plan for emotional support. Thinking of that meant that every time I considered finishing that post, I'd anticipate how much it would upset me and put it off.
Recently, Amanda Baggs posted about a video by the Judge Rotenberg Center. I considered watching the video she discussed, but didn't have the time. Since then I've had time to recognize how much the JRC reminds me of my first school, only worse, and just how terrifying it is. They directly attack the ways I survived in my first school. I thought to myself 'they can't kill me' whenever I was heading for a big confrontation. I also knew I'd get sent home to understanding parents. The second is how that movie would trigger me.
Once, to my father's outrage, he was told they should treat me worse so I didn't want to get sent home. If I knew my parents would react to me describing how I'd hidden under a table to get away from my teachers and they'd dragged me out, hurting and terrifying me, by saying 'can you talk about something good about the school?' I have no idea how I'd survive. Running away, trying to kill parents/teachers, or pretending I can no longer see, hear or move come to mind. However, I might not be able to escape, and my dislike of hurting others means that killing someone is not something I'll do, and if I did get so desperate that I could bring myself from imagining killing someone to really killing someone, no doubt they'd be able to stop me. And as for the last, 'noncompliance' would be punished, and a punishment causing unbearable pain would be intolerable.
It's like acknowledging that something will hurt has given myself permission to avoid doing things that are important to me. I don't like this. We're home today, me and Mom, so I asked her if she could be there for me while I watch the rest of the Autism Every Day video. Mom told me she couldn't handle it today, but in a couple days she can.
I'm scared that I'll put it off again, that I won't be able to bring myself to do it. I'm worried that maybe Mom is really saying she doesn't care about me enough to put up with me needing support, and she'll put it off again (unreasonable, but try telling my emotions that). I really want to do this, but I'm scared.

The Family I Want To Have

I tried to send this to Celebrating Autistic Parents, but it bounced. So I'm posting it here for now.

I love children, and have always planned on having children. Recently I realized I don't have to get married and have sex to have children, which is great since I'm not interested in sex. I'd like to either co-parent with someone else who wants sex and no children, or be a single parent. I'd like one child like me. I'm planning to go to a sperm bank and find the most autistic-like donor I can. If I'm lucky, I'll get an undiagnosed aspie, otherwise a BAP donor. Either way, the chance of the resulting child being autistic would be high.
Recently I heard on the radio about a lesbian couple having a child. When they were at the sperm bank, they got to listen to a tape of the sperm donor talking about his chosen topic. If I go to a sperm bank like that, I'll look for someone who picked an unusual topic and has odd tone of voice. I also heard about a sperm bank that only accepts high IQ donors. If that sperm bank gives data on subtest scores as well as overall IQ, I could pick someone who either has high verbal-low performance with low Comprehension and Arithmetic, or someone with high Block Design and low Comprehension.
I'm also planning to adopt a baby with Down Syndrome. There are many adoptive parents who specifically ask for a Down Syndrome child. If I can adopt a child with a rare developmental delay syndrome, that would be great too. I'd love to be a parent of a child with Angelman Syndrome or cri du chat syndrome. I will delight in my children's uniqueness. Even NTs are unique, and I'll love an NT child just as much as a disabled or gifted one. I'll raise all my children to value themselves and value diversity, and to be advocates against discrimination. My main method of teaching them this will be example.
But I worry about how good of a parent I'll be. Will I starve my children because of my tendency to forget meals? Will I be snappy at my children when overwhelmed, and hurt their feelings just like I hurt my brother's? Will my history of sexual abuse make it hard for me to cope with changing a little boy's diaper, the way it upset me to help a disabled boy get his pants on after swimming in the volunteering program I'm involved in?
I also worry about how society will react. Will a doctor call social services, or threaten to, in order to make me put my autistic child on medication or in ABA? Will I be hated for wanting to have a child like me? Will people treat my kids badly for being different, for having a parent who's different? If I have a kid who needs heart surgery or a respirator or something, will I be pressured to let my kid die? Will I be able to cope, and keep my kids safe and well despite discrimination?
When I think about it, I wonder how many NT parents-to-be worry the same way. Does a black person planning to have children worry about how they'll help their kids deal with racism? I suppose many of them think of how their parents helped them. If I think of my parents, they did a lot to help me. They fought with the school system for me. My mom got so angry on my behalf, she kicked a hole in the wall of our house once. My dad, who may be undiagnosed autistic, was once told that he should abuse me so that being sent home from school would be more of a punishment. He was rightfully outraged by that, and replied that they should make school less of a punishment so I'd want to stay there. They eventually homeschooled me starting in grade 7.
But they made some well-meaning mistakes. They took in my cousins, not knowing the danger they posed to me. They kept fighting with the school too long, keeping me in a bad situation because they didn't know their options. There was also minor stuff such as pressuring me to eat beets when the taste literally made me gag, and insisting that I finish all of a food I've tasted, even if I decided I don't like it. Since they found out about autism, they've listened to me more about my sensory sensitivities.
I think I can avoid making the same mistakes. But what mistakes will I make? How will they affect my child? Parenting is tough, but when you add a discriminatory society, ready to tear apart your children's self-esteem (including my NT child if I have one, because being related to someone who's different is discriminated against too), the consequences of well-meaning mistakes get more serious. There isn't the cushion of a supporting society, instead you have to fight society to raise your children well. And that's harder.
I think, I hope, my children will be better off for having an autistic parent. They'll learn firsthand that disabled people are real people and special as they are. The disabled ones will have a model of how to live as a self-respecting disabled person. If I have an NT child, they'll learn that they are not 'perfectly normal', just normal. But it will be a tricky job. Managing my needs and my children's needs in a society not designed for us, while fighting to keep society's attitudes from wounding my family and myself, will not be easy. But if I succeed, the result will be wonderful.

Victim of Who?

Recently I was trying to post a response to a parent of an autistic child who said that despite all the bad stuff about the Autism Every Day video, she liked it. She compared it to feminist consciousness raising. In trying to write my response (which was lost due to computer problems) I kept trying to get at what really bothered me about that comparison, without being able to figure out what it was.
After the computer error had happened making me loose my response, and I'd had a meltdown exarcerbated by the fact that my brother had been pestering me to give him a turn on the computer, I realized what the basis of the problem was. Both Autism Every Day and feminist consciousness raising are about speaking out about how the people feel victimized. The important distinction is who they think are victimizing them.
The parents in Autism Every Day seem to think that they are victims of their children. But in reality, both they and their children are victims of society. It's like an abused child blaming her mother for not pleasing her father sexually and 'causing' him to abuse her, taking for granted that he has sexual 'needs' that must be fulfilled and he can't help himself.
I think I've written before about the problems of taking society for granted. If you assume that society's view is correct, and are being victimized by society, you end up either ignoring your victimization or blaming the wrong people/things. My mother told me some feminists had the idea that women needed to be liberated from pregnancy and childrearing. Thay hadn't challenged society's view of those things.

Disabled Boy and Dog Story

There's this 'heartwarming' story circling around, one of those stories people incessantly forward around. I've written about a few of these before, I think.
This one starts with a farmer whose dog has puppies. He puts up a sign 'free puppies'and soon enough, a boy comes over to see the puppies. The man calls them out. The mother comes out, followed by three energetic puppies. Then a fourth puppy comes limping out, noticeably smaller than the other three.The boy says "I want that one." indicating the disabled puppy.
The farmer replies: "You don't want that puppy. That puppy can't run, can't play with you. Get one of the other puppies."
Rolling up a pant leg, the boy shows a leg brace and says: "I don't run too well either. That puppy needs someone who understands."
Clearly, that boy is a wonderful, compassionate boy who empathizes with that puppy. That is what's usually recognized about that story by the people who forward it around. But what about the farmer?
The farmer seems to think that there is only one way to have fun with a puppy, a way that the disabled puppy isn't good at. He seems to think that a puppy who can't run fast is not a puppy an ordinary boy can enjoy. Only a disabled boy who also can't run would want such a puppy.
Imagine how this would feel to the boy. Being told that one puppy is not worth as much as the other puppies because that puppy is different in the same way you are different. No doubt this boy will have been given the message that he is inferior many times, and this is yet another time.
It never stops hurting, though the individual incidents blend together. I was told by many people, directly or indirectly, that I was inferior. My teachers tried to emotionally bully me into conforming, when even if I was willing to conform, I couldn't. Later I had a teacher who I'm beginning to suspect gave me less pressure out of pity and a class full of kids who bullied and/or excluded me constantly. Each incident hurt. They hurt all the more because I was used to being told I was worthless.
I wonder if the farmer's words made the boy even more determined to have that puppy, made him empathize even more with that one puppy. I wonder how that boy felt about revealing his disability to the farmer, about using it to convince the farmer to give him that puppy.I wonder if he felt ashamed of his leg brace, if he, too, thought a boy/puppy who couldn't run fast wasn't as good as one who could.
[Edit: Just as I was saving this, I remembered something else that bothered me about this story. The boy's disability was not immediately apparent, so the farmer assumed he was normal. In talking about the dog, the farmer was speaking as one normal to another, saying things directly that he might have tried to hide from a visibly disabled boy. He assumed that the disabled were the 'other' in that conversation. That, too, hurts. When I'm talking to someone about autism I feel compelled to tell them I'm autistic to keep them from assuming autistics are the other in the conversation. It hurts when they assume I consider myself superior to autistics, when in fact I am one of them.]