Tolerating Suffering

I found a manga called With the Light: Raising an Autistic Child. It's a great story, I highly recommend it. But in this entry, I'll talk about one of my least favorite parts of it.
The autistic boy in the story, Hikaru, entered school after a year of integrated preschool. He found it really hard to adjust to school. Although he adjusted after awhile, for months he was crying much of the time. People would comment on it all the time.
Another example is the following, gotten from here:

"Anna stopped smiling and laughing for the entire four years she was on Vigabatrin, but started smiling again within a week after we discontinued it. We eliminated it because of our concerns about possible vision loss"

Hikaru's mother, Sachiko, was portrayed as a very caring and understanding mother of her autistic son. I don't know much about Anna's father, but I assume he cares deeply about his daughter as well. But there seems to be a much greater tolerance for suffering of developmentally disabled children than other children. My mother even shows this. When I cry or self-injure, she doesn't get as concerned as someone who doesn't know me would get. (By the way, in case I haven't stressed this enough, these are good parents. My mother and Sachiko and presumably Anna's father are all good parents. That's part of the problem - even good people act this way.)
I'm not sure why there is this tolerance for suffering. Considering the kind of people who act this way, it's obviously not hate or uncaring. And it's unlikely to be that these people truly don't think disabled people feel suffering, or feel it only mildly. It must be something else.
One possibility is that many developmentally disabled people are atypical in emotional reactions to events and in how we show our emotions. I have less sympathy for people who are upset by something if it's something that I've never been bothered by (for example, a claustrophobic in a small space). I also have less sympathy for unhappy people who are harder for me to read emotionally. Not that I don't think their feelings matter, in either case. I just don't feel as strong an emotion reaction to their suffering. And this is when I do realize they're unhappy.
The solution to this is simply to recognize it and remind yourself that just because you don't feel that way or show it that way doesn't mean the person's suffering isn't as strong as yours, and to consciously try to react appropriately.
Another possible explanation is not knowing how to help. As a result, the person withdraws and shows less obvious reaction to the other person's distress. This is also cited often as a reason that bystanders don't intervene in bullying - they don't know how to. The best solution for this is education - learning how to help. If you're a parent having this kind of problem with your child, I have several bits of advice. Firstly, pay close attention to what your child likes and dislikes, and especially how they are comforted. If they rock when upset, for example, they might find you rocking them or sitting in a rocking chair comforting. Secondly, talk to other people and research stuff to find out how others deal with children like yours being upset. Lastly, try things out that you think might work, being careful to stop if it's making things worse.
Another possibility is unconscious prejudice. Although you may overtly disagree with a position, and honestly think you disagree with that position, you might on some level agree with it. This shows up in your emotional reactions and in things you say and do without thinking much about it. It may be that some people deep down don't believe that developmentally disabled people are as capable of suffering as others are, even though their conscious beliefs are quite different. The way to deal with unconscious prejudice is to recognize it in yourself. Once you've recognized it, teach yourself different patterns of reactions by recognizing a prejudice-cued reaction and consciously correcting it, and by trying out different behavior patterns. One of the biggest impediments to dealing with your own prejudice is a strong investment in viewing yourself as a 'good person'.
A third possibility is that very often developmentally disabled people are upset more often and more severely than non-disabled people. If you know someone who often cries, you are likely to get used to them crying, and react less than you would to someone crying who rarely cries. This is appropriate if they cry more often because they show their emotions more strongly, so that mild sadness results in them crying whereas another equally sad person just gets quieter.
But this usually isn't the reason developmentally disabled people, particularly autistic people, act upset more often. Instead, it's that we're under more stress in our daily lives, exposed to more upsetting, tiring, or overloading things on a day-to-day basis than most people are - simply because most people are fine with those things and our society is built around them. Add in the higher rate of trauma and abuse, meaning that developmentally disabled people are more likely to have flashbacks and experience extreme stress.
These sources of extra stress must be dealt with. It's not acceptable for disabled people to have so much more to deal with than non-disabled people. But that's going to take a lot of work, over a long period of time. It's going to take changing the world and discovering things about disabled people that are not currently known. Any closer you can get to that goal is a good thing.
In addition, people need to recognize this. They need to realize that this person they are with is going through much more every day than most people do. Not to pity them, but to take that into account - to give them more support, to avoid adding unnecessary further stress on them, and so on. And not just fleeting reminders - those only change things for a brief time, if at all.
Our suffering shouldn't be used as justification for killing us, subjecting us to harmful 'treatments', preventing the birth of people like us, or many other things it's used as justification for, but neither should it be overlooked or treated with less concern than the suffering of other people. Our suffering is not to be expected and accepted.

New Breakthrough in Counseling

I had a counseling session yesterday. I told my counselor that I'd had a meltdown and a bit about it, but I really didn't want to talk about it, so I started spacing out and said 'my vision's going strange'. She asked me what I meant and I explained that it was all fuzzing over except what I was looking at, which became very clear (it was a basket underneath a chair). I told her that tended to happen when I was upset. Then I said that I felt like I was being pressured to talk about my meltdown even though I didn't want to. This is the first time I've been able to say no to this sort of thing, to say that I don't feel comfortable discussing my bad behavior with a relative stranger. Before, I always just pushed that discomfort down because 'you're supposed to tell your counselor things like this' and also because I'd learnt that not talking about bad things was dangerous.
Then we discussed how I felt counseling wasn't really helping me very much, and how I felt it was too verbal. She suggested writing nice things about myself on rocks so I could handle them when I was upset. I said I wasn't sure that would help, then got the idea to get my younger brother (who was in the waiting room because he'd decided to accompany me) to write stuff on the rocks. He happily did that (partly because he was bored in the waiting room). So then I had a collection of rocks with things like 'nice' and 'good freind' (that's how he spelt it) and 'observant' written on them.
Later that evening, at home, I got into an argument with my brother and had a slight meltdown because I felt like he didn't care about me. My mother coaxed him off to have a bath and meanwhile my father gave me a container for my rocks because the bag I'd been given for them had broken. I started rubbing each one to warm it and then putting it in the container.
The first few I put in, but I found a couple I disagreed with and set them aside, thinking I might do something with them later. A few rocks later, I decided to put the ones I thought weren't wrong in the container, and with the others, work on convincing myself until I felt I could put them in the container.
Mostly, they were all things like 'nice', 'kind', etc, except for 'truthful'. Anyway, I asked my father to tell me ways I fit those when I couldn't think of any myself. By the time I'd gotten them all in, I felt much calmer. (Then I stood up and one I'd overlooked, 'careful', fell off my lap. That was funny.)
Anyway, the big breakthrough was that I found a way of dealing with my feeling of not being cared about in a way that fits my mind, though it may not be standard therapy. I also broke another rule I had that wasn't good for me.

Get Nate Home

I found out awhile ago about a boy, Nate Tseglin. What I heard first was that he was a self-injuring autistic boy with a tendency to severe reactions to neuroleptics who was forcibly removed from his parents because they refused to medicate him to treat his self-injury. I assumed originally that he was severely autistic, even though I should know better than to think self-injury only occurs in low functioning autistic kids. In fact, Nate has been diagnosed with Asperger Syndrome.
This threatens me, too. I'm high functioning autistic and I also self-injure, though apparently not as badly as Nate. I also have serious meltdowns which have almost resulted in me being hospitalized a few times.
I know this will sound bad, but I didn't think that much about Nate until I found out he was high functioning. I thought it was a bad thing, but I was safe. But if the wrong thing happens, something similar could happen to me.

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.]

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.

Murder-Suicide with Autistic Kid

Kevin Leitch posted a blog entry about a woman who killed her disabled son, who is described as autistic by some and Fragile X by some. I wrote a response, but he'd closed the commenting, so I'm posting it here.

"To echo what Amanda has said, there have been reports (mercifully few) of mothers murdering their children – with and without the subsequent suicide of the mother – and the majority of them involve “typical” children."

"Yes, this was murder. Murder of a child, followed by the mother immediately imposing capital punishment on herself.
As a person on the autistic spectrum, a longtime sufferer from severe depression, and the mother of an autistic child, I have compassion for both mother and child here. Yes, she murdered her son. Yes, it was wrong to murder him because he was autistic.
But rather than pointing the finger at the mother, I see far more fault in a society that would leave her unsupported until she reached the breaking point which resulted in this terrible tragedy. I have been close to that point before, and I can tell you that- as a person with few financial and social resources- the support offered to me and my children has been woefully inadequate."

At one point in Half Breed, Maria Cambell (I think that's her name) described thinking about killing herself and her children. She changed her mind at the last minute. She felt like her life was intolerable, and since her children would only suffer the same sort of stuff she had, it would be better to spare them that.
I think most people reading that part view it as Maria Cambell being the target of discrimination to the point where she was very depressed, and her planning to kill her children as well as a twisted form of caring, considering her mental state.
But with disabled kids, it may be seen as perfectly reasonable, the discrimination aspect is usually ignored, and most people devalue the child(ren) killed.

"The nurse said, “you are getting better you are walking more each day” and the depressed person said, “No I’m not” The nurse said, “look, you walked all the way around the circuit…” the man replied, “Yeah, well you someone created (built) a shortcut through the middle of the center section we were walking around so that I was only walking half as much”"

When I get told I'm making progress, and given examples, I tend to say "that doesn't matter. It's this that matters." and point to something unchanged. For example, Mom says I've made progress because I have less meltdowns and the meltdowns are less severe. I respond that I haven't made progress because I feel just as trapped during meltdowns.