Finding Agreement

There is a listserv I've joined recently, about girls/women on the autistic spectrum, called Autism_in_Girls. It's got a mix of parents of autistic girls, autistic women and various other people.
Anyway, I started out commenting on what people said that triggered posts from me, just as usual. Some were about various features of autism, such as one person wanting to know about anxiety in autistic girls, but when some people posted about biomedical treatments for autism, I commented on that as well. I wasn't as careful as I sometimes am about phrasing my comments diplomatically, and this list has a number of people who support biomedical treatment of autism, so an argument broke out. When someone asked whether I'd come to this list in order to upset people, I felt terrified. It was like I was in a village hearing someone yell "we'll drive the witch out of town". I felt like I was about to be cast out.
So far in this story, it's just what I've had happen on many lists. I say what I think and feel, and everyone likes my unique contribution, then I say 'the unsayable' and people suddenly turn against me. Usually what happens next is that I fight for awhile, and then leave the group, feeling beaten down emotionally. But that's not what happened on this list.
I argued awhile, trying to clarify that I hadn't said any of them were bad parents and the various other things people had read into what I'd said, trying to explain what I really meant and why it was important, and then something really unusual happened. I connected with one of my fiercest opponents.
To summarize what happened, the other person (a mother of an autistic girl) said she'd learn much more from me telling my story than posting inflammatory comments. I replied with a reference to the definition of self-narrating zoo exhibit, saying I didn't want to be one. She replied to that by saying she didn't want me to be a self-narrating zoo exhibit - she wanted me to say what was meaningful and why, how my story shaped my view of autism, what made me say the things I said. She wanted to understand me, in short.
And in reply to that, I took a risk and gave her exactly what she'd asked for. I told my story (in two segments). For those of you who don't know, I was sexually abused by my cousins, attended a really bad school from K-4, attended a somewhat better school with a bullying problem from 5-6, was homeschooled from 7-9, read about neurodiversity and self-diagnosed as autistic at 14 or so, attended a high school for grade 10, was diagnosed autistic at 15, and have been homeschooled for grades 11-12. My parents never thought there was anything 'wrong' with me and refused to have me diagnosed with anything other than PTSD, not because they didn't realize I was different, but because they saw no problem with how I was. This is a brief summary, I told my story in much more detail on this list.
And the risk was worth it. I felt very exposed, saying so much about myself to people who were hostile to me, but after that they weren't hostile any more. They still don't agree with me on many things, but I think they're coming to understand my viewpoint. We've made peace, though I don't know how to go on from here to regular conversation again. I'm still trying to figure out what happened. I'd love to know how this can happen in other settings, but I don't understand it, or how much of it was under my control.
On thinking about it, though, I have some theories about things that may have made this different from other similar encounters.
Firstly, I wasn't the only one. There are several autistic women on this list, one of whom was quite vocal in supporting me (and one who was confused by much of it and kept asking people to clarify, which we did as much as possible). I've read in social psychology textbooks that one person expressing a minority viewpoint in a group has little impact on other group members, but if even one other person expresses agreement, the minority is much more powerful. So that might be part of it - though I've seen times in which multiple autistic neurodiversity advocates argued with a majority of people looking to cure autism and eventually each of them were successfully driven away, so this can't be all that made a difference.
Secondly, a major person on the other side of the argument, though she attacked me personally early on in the argument, used quite a lot of logical discussion and trying to clarify her understanding of my viewpoint as well. Not only did this make it much easier for her and I to come to an agreement in itself, but it also encouraged me to argue better myself. I admit that I did some personal attacks, though mainly towards people group members supported rather than group members themselves (eg, I said 'reputable DAN doctor' was an oxymoron), but in reaction to her model, I stopped doing that.
Lastly, I think I was different. Some of this took place during the lead-up to the ARM conference, when I was getting a really heavy dose of anti-autism stuff while simultaneously having a lot of personal support, and the bulk of it took place right afterwards, when I'd had a big shift in my viewpoint of parents of autistics as a result of my mother and the numerous activist mothers I met at the conference, as well as a shift in understanding myself and my own story (which I should probably blog about soon). That conference made me much more confident as well, and therefore less prone to defensiveness in reaction to that argument. I was able to confidently say 'no' to a request for proof of my diagnosis, and rather than feeling like my story was too atypical to teach anyone and would just show I had no right to talk about autism, I felt that my story illustrated something useful and significant.

Solutions to Self-Advocate/Adult Autistic Issues

A lot of autistic self-advocates criticize the mainstream autism community for focusing so much on children on the spectrum, rather than arranging for help for the serious issues that adult autistics face. It's a matter of focus - on children and cure, as opposed to adults and support.
But it seems like many autistic self-advocates (myself included) do the same thing we criticize others for.
A couple of events made me realize this. First, for quite awhile, I've been a volunteer expert at AllExperts in the category of autism. And I've easily handled many questions from parents of autistic or possibly autistic kids, discussing issues such as how to get a kid to stop playing with spit and how to tell if your 9 week old is autistic without much difficulty. That's the typical sort of questions I get, showing the same kind of focus that autistic self-advocates criticize in parent-run autism organizations.
But one question I got was something I really struggled with. An autistic person was kicked out of his home, living in a salvation army hostel, and asked my advice. I hope my answer helped, I think I did fairly well, but it was really hard. I had to do a bunch of research and pondering and try to figure out if the organizations I was reading about would do anything to help him. This wasn't an easy answer to write like all the parent questions.
Recently, I was reminded of this by a question that struck the same feeling in me. This one was posted on several autism listservs I frequent. An autistic woman who lives in a group home is currently being threatened with going to jail for having what appears to be a relatively minor autistic meltdown. She didn't hurt anyone, yet they're calling her violent. And I don't know how to help her, what to say to her.
We use stories like these in our activism, to show why more support is needed, but when we are called upon to help someone in a situation like that, what do we do? We don't know how to help, we don't know what to do. We don't have the easy answers like we do for parent issues. And that's at least partly because even as we criticize their focus, we let it direct our focus. So we don't think as much about how to help these people no one seems ready to help.
It seems to me that not only are your beliefs about various issues important, but so is what you choose to discuss. And so often, the curebies successfully direct conversations about autism to their issues, their focus, and we don't fight that well enough.
So I'll do the research to see if I can help this woman. I'll try to at least direct her to someone who can help. And in general, I'll try to find, or make if I can't find, supports and solutions for these issues.

We're Not Silencers, We're Silenced Too

Traditionally, the people talking about childhood-onset disability and expressing their views of it have been professionals of various sorts. If you read stuff about childhood disabilities from older time periods, before the 1950s or so, it's hard to find anything written by nondisabled parents of disabled kids - it's virtually all doctors, teachers, psychologists, etc. It's less so now, but many parents still get what Peggy Lou Morgan calls the 'dumb parent treatment'.
As a result, it seems like some parents become very vigilant about making sure their voices are heard, rather than 'experts' who know nothing about their lives dictating what's going on. This is a good thing. It's an adaptive response to being silenced. It means you are advocating for yourself and your child, and both of you stand to benefit from it.
But when these parents meet disabled self-advocates (especially, it seems, when parents of autistics meet autistic self-advocates), too often they don't turn this off. They don't see us as different from professionals in the field of autism. And when we start to say that we need to be heard, rather than just having parents of kids like us talk, and we say things about parents not understanding their children and making mistakes, the parents see it as 'yet another expert come to shut us up and tell us what we're doing wrong'.
And the reaction that is a good and productive thing against the know-it-all professionals who aren't listening to parents gets directed at people trying to speak up about their own lives, and the lives of others like them. People who are even more silenced than parents of disabled kids, whose voices are less often heard. And these advocate parents end up reinforcing and perpetuating oppression against their own children.
What parents need to remember is that just because you are the one being silenced and treated unfairly when talking to professionals, doesn't mean that's true in other circumstances. You can be the perpetrator of oppression in one setting, even though you're the victim of it in another setting. Parents need to remember that fighting back against oppression can seem to the priviledged ones like oppressing them, and that you can be more priviledged than another group even though you're part of an oppressed group too.
And most importantly, parents need to remember who and what they are fighting for. They are fighting for their children. And we, (in the group sense) are their children. Parents should imagine their child, grown up and able to speak or type their self-advocacy, talking to other parents about what they want for children like them. Would you want those parents to reply the way you have?

It's Become Personal

When I first got involved in autistic rights, it was mostly an intellectual feeling of wrongness. I suspected I was autistic, and later knew for sure, but it didn't personally affect me much. Most of the contact I have with overtly anti-autism people is generally a) on the Internet, and b) initiated by me (I have plenty of contact with people who have no clue about autism, but are generally willing to take my word for it, though). The few overtly anti-autism people I've met since leaving school in grade 7 I am usually fairly able to defend myself against. They aren't that big a problem for me.
So at first, I was arguing on intellectual grounds, with little emotion. Not to say that I didn't care, I did, but in an intellectual way. The autistic people I advocated for were abstract to me.
But then I started volunteering with disabled kids. First, I participated in an ABA gymnastics program, with autistic kids and neurotypical kids. But ABA tends to keep you distant from the kids. Next, I volunteered with a program helping autistic kids train their own dogs, as assistance animals. But that didn't last long. Recently, however, I've been volunteering with a variety of disabled kids (though the program coordinator prefers to pair me with autistics) in a physical activity program.
In volunteering, I've met autistic kids. I've also seen the harm people do to them with good intentions. The worst example was twins with separation anxiety in the ABA program whose mother was used as a 'reward' (really, it was temporarily stopping a punishment). Another example, that I actually did more to help, was an autistic boy being gently restrained and redirected for hand-flapping. I certainly convinced them not to require me to do that, and I think I probably convinced them not to do it either by example.
The thing is, now it's not so intellectual. Now, I read things written by a parent of an autistic kid and imagine the parents of the kids I've met saying that. I read about murder of autistic kids and instead of just seeing a wrong, I see a child who died. I read stuff by professionals working with autistics and see the children they work with being treated in the way they advise. One professional said, in a book I read, that 'being teased is what happens when you act weird' and I imagined a young autistic bully victim hearing and believing that. (She actually said this to an autistic boy.) I read stuff by autistics who hate autism and my heart cries out with the thought that the kids I know may feel the same way.
It's still intellectual, because I still have reasoned arguments and logical conclusions. But now, it's also emotional. I realize more that real people are being actively hurt by these attitudes, and I feel intense empathy for them. To those who say 'spend time with an autistic child and their family and you will see how terrible autism is' - I have spent time with them. And rather than seeing a terrible disability, I see a terrible society.

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.

My Interests

This is my contribution to the current Disability Blog Carnival. The key phrase is 'a few of my favorite things' so I thought I might want to describe the history of my interests.
For those who don't know, a distictive (and diagnostic) characteristic of autistic people is unusual interests. Autistic people often have interests that are unusually intense (for example, spending most of your waking hours thinking about your interest), narrow (only 1-2 interests, the interests themselves often having a fairly narrow focus) and unusual (for example, a 14 year old researching rare syndromes). My interests fit all three of those criteria, although the narrow criteria is only barely met.
My first word was 'meowmi', which probably indicates my earliest interest - cats. When I was 3 months old, one of our cats had kittens, and for awhile in my infancy we had 5 cats. My parents gave one of the kittens away when she got old enough, so then we had 4 cats - 3 of which were highly child-appealing, playful kittens.
I also played with one toy, a shapesorter, obsessively for awhile. As soon as I'd figured out how to not only put the shapes in but also get them out without opening the container, I lost interest in that toy.
My interest in cats broadened into an interest in animals that refocused into an interest in the rainforest. My favorite country was Brazil, where the Amazon rainforest mostly is. I remember meeting a new pastor at our local church and telling him my toy monkey had come all the way from Brazil to meet him, and that he had a prehensile tail. I demonstrated this by tying the monkey's tail around my arm. The interest in the rainforest led to an interest in environmentalism, because every book and movie I saw about the rainforest emphasized how fast it was disappearing and how many species were being lost.
After reading Silverwing I decided my favorite animals were bats. My Dad says I told him that my favorite animals were bats, cats and dogs, to which he asked "in alphabetical order?" This fit into my interest in the rainforest pretty well. My best friend shared my interest in bats and for the Halloween party at school, we both appeared as bats! She's the same friend who made me a twist tye snake at one point and started my whole thing of making twist tye creatures.
I also developed an interest in genetic engineering and at one point said I wanted to be a scientist when I grew up. The kind I meant was a 'mad scientist' who creates weird creatures for no better reason than curiosity and interest.
Somewhere around that time I started reading the book series Animorphs and became obsessed by it. I insisted that it was real, that Yeerks were real. My school decided to try to stamp out this interest, which only made it stronger. I suppose I must've scared them by insisting it was true, but I didn't really believe it. I just wanted to believe it.
I also had an obsessive interest in black holes, sparked by the song Cygnus X-1 by Rush. This also led into an interested in the beginning of the universe, but I disappointed by the lack of facts about how it actually began. And the idea of alternate universes really appealed to me. After awhile I dropped that interest, but came back to it from another angle after reading The Subtle Knife.
My interest in environmentalism broadened after awhile into an interest in world problems, and I obsessed for awhile on famine and war in Africa. Then when my school gave us a 'say no to drugs' drug education thing I became obsessed with drug addiction. I was being badly bullied and was pretty depressed at this point, and in general when I'm depressed I think about societal problems and other unpleasant things.
I also watched a movie, the title of which I can't remember, in which some aliens tried to kidnap children as pets. I latched onto that idea and made many twist tye stories about that. In all of them, unlike the movie, the children actually were captured and were trying to deal with that somehow.
I developed an obsessive interest in languages after awhile. I had a Bengali babysitter and learnt Bengali when I was 1 year old, but later forgot it. I also attended French immersion from Kindergarten to grade 6. After awhile I decided I wanted to learn various other languages, but never stuck with one long enough to really learn it - except Dutch, which my father urged me to learn because his ancestry is Flemish. I'm not really fluent in Dutch, but if you speak it to me in short statements I understand most of it. After awhile I developed an interest in endangered languages, and in reaction to reading Lord of the Rings I became interested in invented languages. Because my Dad is a computer programmer, I also was interested in computer languages for awhile.
In reaction to a Disability Awareness day at school, I developed an obsessive interest in disabilities. I wandered around with my eyes closed, sometimes waving a stick around, begged my mother to let me ride in a wheelchair whenever I saw one unoccupied (she never let me), borrowed the crutches my parents had gotten from the doctor when my mother hurt her foot and never returned (my father now uses them when his undiagnosed arthritis-like joint condition acts up), and learnt Braille, fingerspelling and a little bit of ASL. I lost interest in disabilities after awhile, then returned to it when my mother wrote an article about a glue-sniffing mother that discussed FAS and I decided to research FAS. This led into researching autism, and recognizing myself in Temple Grandin's writings about autism, which led into searching for more stuff by autistic people, finding out about the autistic rights movement, and eventually getting diagnosed autistic.
Also, I developed an interested in the Creatures series, started when my mother bought me Creatures Adventures. This also rekindled my interest in computer languages because you can create your own add-ons. And it fulfilled my wish to be a 'mad scientist', in a way, because you can genetically engineer (gengineer) the creatures in these games.

A Place Where I Belong

Later today, I will be attending a youth group for developmentally disabled teens. It's called Fusion Inclusion, it's an advocacy group run by SACL.
I've only been to one event of theirs - an end of year party. I attended it not sure what to expect and very afraid. I can get along well with severely disabled teens by putting on my 'child mode'. Not meaning any disrespect, the way I act towards children is much less condescending and superior than most people. I listen to them and am interested in what they think and feel, instead of acting as if kids can't teach me anything. With kids, the big focus is on what they're thinking, feeling and doing, whereas with adults I focus on myself and impress them with my knowledge. But with neurotypical teens, I either withdraw or extend a lot of effort to produce a very fake sort of interaction. I'm terrified of NT teens.
I was afraid these kids would be too NT for me to handle. The only teens I'd interacted with were NT or severely disabled, so I didn't know what to expect from mildly disabled teens. And I wasn't being a 'helper' or a bystander, as in every other interaction I'd had with other disabled people. I was one of the group instead of being set apart by status and role. I've never been one of the group - either I am set apart by status or by neurology. I assumed the other kids would be developmentally delayed non-autistic, too, so I thought I'd have little in common with them.
I arrived late, and they had left the meeting place, so we wandered around a bit before seeing a bunch of teens and young adults, some obviously disabled, walking together. I came up and asked if they were Fusion Inclusion, and they were. At first the only ones I spoke to were the leaders, who were adult and not obviously disabled. I was fairly quiet. But gradually I got drawn out by the others, enticed into interacting with them. And I didn't slip into my two most easy patterns of child-adult or adult-child interaction. Nor did I struggle, planning out each action before I did it. Instead, I acted naturally, more naturally than I act with either adults or kids (and that feels fairly natural).
And what really shocked me was that I belonged. Although not all of them were autistic, enough were that I didn't stand out. I didn't have to think about how I appeared, either to hide my autisticness or show it as a statement about myself. I just naturally acted myself - I stimmed, I acted clueless about some things and knowledgable about others, I peppered them with facts and listened to what they told me with interest. By the end, me and a guy with CP were running around putting ice cubes down people's shirts, especially the pregnant group leader who felt too hot. I even put ice cubes down his shirt. My parents came to pick me up and I asked if I could stay a bit longer, and my brother put ice cubes down people's shirts too. But I didn't need him as a social facilitator for me - I belonged there.
So two days ago one of the group leaders called me, telling me they're meeting again today. As soon as I hung up the phone, I squealed and flapped, grinning widely. I've done that periodically since, whenever I think about going to another Fusion Inclusion meeting. And I've been told it will be more regular now, it's properly starting for the year. Being with them is healing, it heals wounds that are so much a part of me now that I don't even notice how much they hurt until they hurt less for a bit.
[Note: this is my 100th blog post!]

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.]

Who Can Speak for the Spectrum

Very often when an autistic person makes some statement about autism (contradicting what the autism establishment wants to believe) they are told that they 'don't speak for' X category of autistics. I would give a qualified agreement to that.
I know my own mind. I also know the behavior of people I interact with and what they say about themselves or the behavior of other people. I can make inferences from statements and behaviors about another person, but I am not capable of reading their mind. I can't know for certain if my inferences are correct, or if other people's statements are correct. I know intimately what my particular kind of autistic mind is like, but I don't know anyone else's mind, except what they tell me or I infer from their behavior, which is not infalible.
The same applies to everyone else. If you've decided somehow you know what someone else's mind is truly like, then without knowing any more information I can say you are wrong. You know what you observe or what they say. What they say may or may not be accurate, your interpretation of their behavior may or may not be accurate.
My inferences about other people, though fallible, can be useful. I infer from my autistic friend's smiling and flapping and tensing that he is excited, when I ask if he is he replies 'oui' (yes), so I assume he is excited at those times. I don't know that, the way I know if I'm excited or if he's flapping his hands or said yes when I asked if he was excited, but the assumption has so far been verified. People do this all the time - make inferences about other people's mental states from their behavior and what they communicate about their own mental state.
A complicating factor is differences in behavior patterns, mental states and the relationship between them in people with different kinds of minds. Every person is unique in these factors, but everyone has more in common with some people than other people. Some of the statistical outliers have been grouped into various diagnostic groups such as LD, ADHD, autism, OCD, etc, etc, based mostly on behavior with some diagnoses including self-report of mental states (eg OCD obsessions can only be determined by self-report). If these diagnostic categories have any validity at all, they indicate the individuals within one category have more in common, in some aspects, with each other than the general population. This is true even for broad categories like autism. I wrote a post awhile ago about this, called It Really is One Syndrome (scroll down a bit).
Considering all this, a person from a particular diagnostic group who provides information about their internal mental experience and their inferences about what aspects of this may be characteristic of that diagnostic group doesn't represent everyone within that group. But someone who only has observation of behavior or physical measurements to report, without any personal experience as an individual in that diagnostic group, is even less able to represent that diagnostic group. This latter group includes the vast majority of parents and professionals.
In addition, a person's opinion on controversial issues relating to that diagnostic group does not necessarily indicate how useful their statements about that group really are. We must not have the double-standard of accepting what certain people say about a diagnostic group while rejecting other people's statements on grounds that also would, if applied equally to all, reject those we accept. For example, it makes no sense to accept what Temple Grandin says about autism while rejecting what, to choose a random example, Frank Klein says, on the grounds that he is high functiopning and doesn't know what it's like to be low functioning autistic. Both of them are verbal autistics living independendantly and fairly successfully who had a history of speech delay and have, from early childhood, shown significant autistic behavior which continues into adulthood.
[Edit: Is anyone actually reading my blog? The past several posts have had no comments left on them.]

Talking to yourself

I just made the following image. I'm thinking of making myself a T-shirt with it. Feel free to use this any way you want, and modify it to look better if you want, as long as you give me credit for the idea. I got this idea a long time ago when I noticed that even if I wanted to be myself without worrying about looking weird, it was really hard to stop myself from lowering my voice when I was talking to myself in earshot of other people.
I'm also thinking of making T-shirts of the advertisement for gettingthetruthout.org and a poster that says 'remember our friends still trapped inside walls, locked behind doors, lying in halls: institutions are not solutions! I found it at www.thenthdegree.com.
I've applied to join fusion inclusion, a youth group run by the Saskatchewan Association for Community Living, and I'd like to wear the anti-institution shirt sometime at a meeting of theirs. Or one of the shirts from that website I'll beg my Dad to buy, such as the one saying 'mainstreaming is like visiting, inclusion is like home'. This shirt describes very well my experience with mainstreaming (in my case unintended mainstreaming - they didn't realize I was disabled).
By the way, my most common type of talking to myself is narrating my thoughts, though I sometimes play with sounds as well - singing to myself or reciting the dialogue of The Hitchhiker's Guide to the Galaxy BBC radio play, which I used to have memorized but now only have partially memorized.

personality test results

A lot of personality tests don't describe me accurately. I came across the similarminds.com website and decided to take some of them.
Here's one:

Factor		low score	high score
Gregariousness	46%	quiet, reclusive	engaging, socially bold
Sociability	58%	withdrawn, hidden	warm, open, inviting
Assertiveness	30%	timid, gunshy	controlling, aggressive
Poise	42%	uneasy around others	socially comfortable
Leadership	30%	stays in background	prefers to lead
Provocativeness	38%	modest, plays it safe	bold, uninhibited, cocky
Self-Disclosure	42%	private, contained	very open and revealing
Talkativeness	42%	quiet, stealthy, invisible	motor mouth, loud
Group Attachment	26%	loves solitude	prefers to be with others
Understanding	58%	insensitive, schizoid	respectful, sympathetic
Warmth	42%	disinterested in others	supportive, helpful
Morality	42%	break/ignore the rules	play by the rules
Pleasantness	42%	aloof or disagreeable	gets along with others
Empathy	46%	out of tune w/ others	in tune with others
Cooperation	82%	competitive, warlike	agreeable, peaceful
Sympathy	70%	socially inconsiderate	socially conscious
Tenderness	34%	cold hearted, selfish	warm hearted, selfless
Nurturance	34%	self pleasing, me first	people pleasing, me last
Conscientiousness	46%	reckless, unscheduled	careful, planner
Efficiency	26%	unreliable, lazy	finisher, follows through
Dutifulness	30%	leisurely, derelict	strict, rule abiding
Purposefulness	30%	inattentive, undisciplined	prepared, focused
Organization	58%	relaxed, oblivious	detail oriented, anal
Cautiousness	42%	impulsive, spendthrift	restrained, cautious
Rationality	70%	irrational, random	direct, logical
Perfectionism	42%	careless, error prone	detail obsessed
Planning	34%	disorganized, random	scheduled, clean
Stability	18%	easily frustrated	calm, cool, unphased
Happiness	38%	unhappy, dissatisfied	self content, positive
Calmness	30%	touchy, volatile	even tempered, tolerant
Moderation	50%	needs instant gratification	easily delays gratification
Toughness	26%	hypersensitive, moody	thick skinned
Impulse Control	46%	lacks self control	maintains composure
Imperturbability	26%	highly emotional	emotionally contained
Cool-headedness	70%	demanding, controlling	accommodating
Tranquility	26%	emotionally volatile	emotionally neutral
Intellect	90%	instinctive, non-analytical	intellectual, analytical
Ingenuity	78%	lacks new ideas	innovative, novel
Reflection	74%	unreflective, coarse	art and beauty lover
Competence	78%	slow to understand/think	intellectual, brainy
Quickness	90%	intellectually dependent	intellectually independent
Introspection	82%	not self reflective	self searching
Creativity	86%	dull headed	synthesizer, iconoclast
Imagination	66%	practical, realistic	dreamer, unrealistic
Depth	78%	lacks curiosity	mental explorer

Here's what I think was inaccurate:
Gregariouasness - I'm not extroverted or shy & reclusive, but I'm not in between either. There are, in my opinion, two types of introversion: a) low-level interacter and b) short-burst interacter. They are using a scale with the first type of introversion contrasted with extroversion. I'm the second type of introvert. I talk a lot and interact a lot when I'm around others, but have a strong need for non-interacting time. So basically my behavior alternates between extreme introvert and fairly extroverted, rarely in between. In my case it's probably because of the on/off nature of many things I do being extended to socializing.
Assertiveness - I have no idea why they think I'm not assertive. It seems like they're confusion cautiousness, assertiveness and need to control others, three separate traits. I'm very assertive, cautious, and not very interested in controlling others (except for my brother sometimes, when I'm overwhelmed).
Leadership - They seem to assume that since I'm not concerned with leading others, I stay in the background. Once again, they are ignoring the third pattern. There are not only leaders and followers, but also non-conformists.
Provocativeness - I don't try to cause trouble for the sake of trouble, but I don't try to avoid conflict either. I base my actions towards others mainly on whether I think it's the right thing to do, not on how they'll react.
Self-Disclosure - For some reason, it says I'm not high on this, even though I've been known to tell people I've just met that I'm autistic, a sexual abuse survivor, or both. Not sure why. Their definition of high self-disclosure sounds like it fits me. Perhaps me and the test had different ideas about what some question meant (kind of like the question "I talk too much". I said it was definately not true of me, because I'm fine with talking a lot, but they probably interpreted that as me not being talkative).
Cooperative - It scores me as high on this. I'm not competitive or warlike, but neither am I "agreeable and peaceful". It seems to be looking on a scale from highly competitive to highly cooperative, and I'm highly independent instead.
Tenderness - Why did it rate that low? I am very caring about the suffering of others. I try to calm my rat Anja down when she's scared by moving little letting her hide, being quiet and not making her the center of attention. Maybe they overgeneralized from my tendency to have little sympathy for people who think you should avoid telling them what you really believe in order to spare their feelings. This test is probably very inaccurate for most activists, because activism is usually a combination of being very empathetic and fighting for what you believe in.
Nurturance - Also inaccurate. I don't put myself ahead of others or others ahead of myself, but they took my saying it was "very innacurate" to describe myself as putting others ahead of myself to mean I put myself ahead of others. I believe I'm no better or worse than anyone else, although how I feel about my worth varies widely.
Efficiency - Why do they equate unreliable and lazy? Those are not the same. Lazy is one end of the extreme, unreliable represents variability. A person who is truly unreliable is lazy sometimes and very hard-working other times, like myself. In my case, it's because of differences in executive functions, the cognitive functions involved in planning and regulating thinking and activity.
Dutifulness - They have the same innacurate assumption I've described so often - considering two traits opposite and thinking everyone can be put on a spectrum of those traits when actually some people are different. I'm not leisurely, derelict, strict or rule-abiding. I think up my own rules to follow rather than automatically following society's rules. I think about whether the rules are correct, and only follow good rules.
Perfectionism - Yet another case of ignoring the third option. The book Strong-Willed Child or Dreamer describes my kind of perfectionism well. That is perfectionism that, rather than being characterized by focusing on details and doing it over again until it's perfect, assumes that either it will be perfect first try or I'll never be good at it and might as well give up now.
On the other hand, this test managed to pick up on my mood swings, creativity and 'need for cognition' alright. Of course, those are areas in which the standard way of having those traits isn't that far different from me.

Letter to the Next Generation of Disabled Kids

To the Next Generation of Disabled Kids:
You may have a lot of struggles ahead of you.
I hope you don't. I'm trying my best to make the world a better place for people like you. I know many others who are working for that too. But there's a lot to change, and others are trying to make it worse for us. Many of you may not even get to be born because of those people. Others may be killed or denied the things that could save your lives.
I hope you never feel like you don't belong. Even if you are one of a handful of people like you in the world, even if they haven't found anyone else like you yet, I hope you feel welcome with people who are different from you. You will probably figure out eventually that you're not like most people. But I hope you will not be taught to think of your difference as a bad thing.
I hope you get what you need, even if your needs are unusual. I hope you never have to deal with being told that since you don't fit certain narrow criteria, you can't have the needs you have. I hope you not only get what you need to survive, but also what you need to live a good life. I hope people realize that there are many different ways of living a good life, and that everyone can have a good life if they get what they need.
And I hope you are allowed to be yourself. There are many ways of being a wonderful person, you don't have to be normal. I hope by the time you're born, people know how to accept a person for who they are, and see the beauty in that. I hope your parents don't keep longing for you to become a child you are not, a child they hoped to have.
If you don't have that, I hope you realize you deserve to have all that. I hope you realize that we can get there, with enough work. You may not live to see that day, but the next generation can take up the work. And fighting back is good for you. It means you challenge the assumptions that label you as a damaged person, and realize you are whole. It means you fight the 'outposts in your head' that society makes, and destroy them one by one.
And I hope your parents support you in that fight, like mine did. If they don't, I hope you find others who will support you. The fight is easier when you have allies, someone to stand up for your rights and help you heal from your wounds. Because though the fight is good for you, it can also wound you deeply. You need someone who will help you heal so you can fight again.
I hope you remember the dream of a world where people like you are accepted. Don't accept the world as 'good enough' if it isn't. Some people might say the work is done, like they've said to women and non-white people, but while people are still treated as inferior for being who they are, the work is not finished. No matter how they hide their views in clever disguises. Disguised injustice still hurts, and it's harder to spot, harder to fight.
Ettina