My Life Story

Awhile ago I posted about a discussion I had on a listserv, and alluded to a shift in how I perceived my own story as a result of presenting at the ARM conference. I said then that I should probably write a blog entry about it soon. Since the current Disability Blog Carnival topic is 'I Am' I thought I may as well do it now.
I'll start by telling my story.
I was one of those autistics who have no obvious delays in early childhood, and in fact usually seem gifted. I had normal to advanced milestones (either first words or first steps at 11 months, can't remember which), was happy and curious, and had intense interests (my first word was 'meowmie', meaning cat - it's my impression that babies whose first words aren't 'mama' or 'papa' often have intense interests) and a long attention span. I also slept through the night at only a few weeks old.
When I was 10 months old, my parents had my cousins (a 14 year old girl and her 11 year old brother) over for a visit for awhile, and while they were staying there, the girl told my parents that her father (my father's brother) was sexually abusing me. My parents told the authorities and were told not to take those kids home after the visit because they had custody now. So that's how my cousins came to live with us.
They were both very troubled kids. The boy would have rages and showed no remorse for his behavior, and lied and stole (once, he stole beer from the local store and was caught on videotape). The girl was manipulative and vindictive towards women and flirted with adult men, including my father. To give an example, she insisted on getting those gloves that you can pull the fingertips back to expose your hand - they were also very poorly insulated - and then claimed to her 'friends' that my parents refused to get her decent gloves. Obviously, both of them were hard to look after, and they made each other worse because of extreme sibling rivalry (apparently my uncle used to force them to abuse each other). Around 18 months or so, I became very quiet and withdrawn, although I'm not sure if I actually regressed. I did lose pre-walking skills when they first arrived.
My parents knew they had a lot of problems, but what they didn't realize was that both of them were sexually abusive. The older one ran away from home at 16 and my parents decided she was better off living on her own. The younger one, at the same age, sexually assaulted a classmate and she pressed charges. At that point, my parents realized he was a danger to me (I was also showing some behavior problems suggestive of abuse) so they sent him to another foster home. Shortly afterward, he confessed, and when the police interviewed me I revealed that both of them had abused me.
I actually don't remember any of this. With a few exceptions, all that I remember is from when I was at least 5 years old. I think I repressed those memories, although since J-Mac has a similar lack of early memory without any history of abuse it could be an autistic thing. Anyway, now we're getting to the part that I remember.
I had a good Kindergarten teacher, although I remember her pulling me out from underneath tables and such when I had a meltdown (I think it's a bad idea to do that - just wait for them to calm down and come out on their own). My grade 1 teacher, however, was the worst teacher I ever had. If you search for 'school trauma' on my blog you'll find a lot of stuff about her and the other teachers in that school, so I won't go into it very much here. One thing I will mention is that my teachers wanted me diagnosed with ADD (it was called ADD rather than ADHD back then) and given Ritalin. My parents kept getting me tested at their urging and every expert said I certainly did not meet criteria for ADD. As my mother said in her conference presentation 'we talked abuse and giftedness, they talked ADD and inherent pathology'. My parents also labeled me a dreamer, based on the book Strong-Willed Child or Dreamer?, but my teachers refused to read it.
My parents pulled me from that school halfway through grade 4 (my school had split-grade classes, and even grades were worse than odd grades for me because I couldn't listen in as the older kids were taught). In grade 5, I started in another school. Many autistics have observed that bullying tends to get really bad around that age range - and being a new student made it worse. My teacher there was very nice, but unfortunately, she was apparently too nice to punish bullies. I used to think of her really positively, but now I'm angry that she didn't do more to defend me from them. I keep thinking of the time that the vice principal was our substitute teacher - that day, the bullying was restricted to outside of class. I didn't like the vice principal, however, because when I had meltdowns he was often the one punishing me. It was at that school that I got sex education, which assumed everyone would be straight and resulted in me misainterpreting nonsexual liking for boys as crushes, and also a 'disability awareness' thing that sparked a brief obsession with disabilities resulting in me learning fingerspelling and the braille alphabet and wandering around with my eyes closed a lot.
I stayed at that school for grade 6 and a little bit of grade 7, then transferred to another school with an 'academically talented' program. My parents assumed that the academically talented program was for gifted kids - that's what they were told - but it was actually for teacher-pleasing hard workers with high-average intelligence. A highly creative, autistic, gifted kid who hated school really didn't fit in. The bullying was even worse there, and partway through grade 7 I was kicked out for 'attacking a teacher' (which apparently meant struggling when I was restrained to keep me from running away). While I was there, however, the principal suggested Asperger Syndrome as a diagnosis. My parents described the condition to me, without saying the name of it, and I said 'there's no such condition. If there was, I'd have it!' They didn't pursue that diagnosis any further, apparently because they felt it pathologized things they liked about me, like nonconformism and intense interests.
After I was kicked out, I started being homeschooled. Without doing any research on homeschooling, my parents figured out the method that fit me best, which I've since discovered is called unschooling. Basically, the child directs their own learning. In my case, I've always been an excellent researcher, so I just needed free time to research whatever I chose.
That's how I discovered autism. My mother has double majors in law and history, and her specialism is probably best summed up as 'feminist legal history'. I was obsessively interested in drugs and drug abuse, and my mother did a piece on how drug-abusing mothers and drug-exposed children are portrayed, focusing on a woman referred to as Ms G (a couple of articles about her here and here). She mentioned FAS in her piece, so I decided to research it. As I was researching FAS, I came across an 'online diary' news column by a mother of an autistic boy, and decided to look for more stuff like that. I found Temple Grandin's stuff and focused my interest on stuff written by autistic people, and found the neurodiversity movement. Right around that time, I started recognizing my own features in what I was reading, finding that I identified a lot with autistics, and gradually shifted in my view of myself as having trauma-related 'pseudo-autism', then being on the broader autistic phenotype, and lastly being possibly/probably autistic. I was at this last stage when my mother got a job in another town and we split into two households for awhile, and I went to grade 10 at a regular high school.
Being in school again brought up a pile of emotions, and I started having worse and more frequent flashbacks than I'd had before. It was that year that I thought up the concept of 'school trauma' to describe how I'd been affected by school, because I realized my reaction to bossy teachers and possible bullies (luckily, I wasn't bullied in grade 10) was exactly the same sort of thing as my reaction to revealing outfits, flirting, and unexpected touch. I had the same kind of terror of being called names or given an unreasonable school-type order as of someone trying to get me to do something sexual. My parents set me up with counseling, and during the intake examination (during which they asked a series of question which I correctly identified as the DSM-IV criteria for depression) I happened to mention that I thought I might be autistic. The leading psychologist there promptly told me I had PDD NOS.
The next year my mother's contract wasn't renewed, we went back home and I went back to homeschooling. I became even more of an activist and started getting involved in real-life activism as well as more internet activism. And then my mother and I did a conference presentation on the 'war on autism' at the Association for Research on Mothering conference, and at the end, she told my story. Afterwards, a woman came up to us and said that my life story was very similar to her own autistic son. Asperger Syndrome had been suggested as a diagnosis for him, as well, but she didn't think there was anything wrong with him, so she didn't get him evaluated. Instead, she just raised him to accept himself. When he was in his teens, he also discovered autism and self-diagnosed.
This is what made my viewpoint shift. There is a category of parents who don't seek out diagnosis for their mildly autistic kids, nor do they have the struggles assumed to be typical when a child is undiagnosed autistic. They just accept their kids. And their kids grow up with problems in school and with other kids, but always knowing that their parents love them as they are, and never fully internalizing the 'different = bad' ideology. Then they find out about autism and the neurodiversity movement, and self-identify as autistic. Their first view of themselves-as-autistics is a positive self-identification, similar to a gay person coming out, rather than a negative-other-identification.
I think kids, while growing up, should learn about all sorts of neurologies such as autism, not as disorders, but just as part of diversity. Our society should be flexible enough that an undiagnosed autistic can fit in and be accomodated just fine. And autism and other neurodivergences should be self-identifications, or things parents identify their children with to help understand them - like my parents did with the label 'dreamer'. We should take these differences out of the control of psychologists as 'gatekeepers' to our community.

Tagging-Type Things

I've been tagged with both a meme and a blog award. Here's the award thingy:

The meme is several categories of 'five things' about myself.

5 things found in your bag:

I don't have one. Some things I've been carrying around lately, however, are:

* A big fat German-English/English-German dictionary

* A printout of Hans Asperger's original article

* A little notebook with an attached pen, mostly containing translations of parts of Asperger's article (using Babelfish and the above-mentioned dictionary)

* A tenth of a yarn blanket, attached to a ball of yarn and a crochet hook

* The Saskatchewan Driver's Handbook - I want my license so I can get this one job in which you look after a developmentally disabled adult during the day, so that after graduation they still have something to keep them busy

None of these are currently with me, however.

5 Favorite things in your room:

I don't exactly have a room anymore, either. I've been sleeping on the couch for several years now. By my couch, my favorite things are:

* Whichever book I'm currently using for bedtime reading - right now, it's Lord of the Silent Kingdom.

* My binders, containing photocopies and printouts of disability and disability rights stuff. There is also a large tupperware container filled with printouts etc, and many strewn on the floor getting clawed by my elderly cat when he really wants to be fed.

* My super-soft blanket. It's not actually warm enough most of the time, so I have it underneath my other blanket. The weight of that blanket also feels nice, it's two layers with stuffing in the middle (can't remember what that's called).

* One of our two cat food bowls is there - I like it mainly because it attracts cats, and then I can pet them as they eat or they decide to cuddle me, since they're there anyway.

* The above-mentioned things I carry around get placed there when I sleep.

* Can't think of anything else. There's a second couch, a stereo, a lamp, etc, but none of them are special to me. Maybe the room itself? I feel safe there, like I can monitor everything in the house while still being a bit out of the way.

5 things you have always wanted to do:

* Turn into a cat. I don't think I'd want to be a cat full-time, but I really want to experience it sometime.

* Just exist, without feeling the need to do anything.

* Be younger - I think ever since I was about 7 or so, I've been wanting to be younger. In a decade or so, it'll be normal (not really, because I want to be a little kid).

* Be a publisher author - technically, I've achieved this already, because I entered a story into a contest and got accepted (will post links once I have them). But I want a full-length book published, and preferably more than one.

* Have a child, especially an autistic child.

5 things you are currently into:

* Playing games on Newgrounds or Kongregate, usually puzzle games, though some of the strategy/defense ones I like as well.

* Researching the history of autism and childhood schizophrenia - as you may have guessed from some of my recent posts.

* Crocheting (see my list of things I carry around).

* Playing Rogue, an old DOS adventure game.

* Petting cats - I've always been into petting cats.

Both of these things require tagging someone, but I don't have the spoons (or thermals) for tagging people. So, for the meme, tag yourself by commenting stating that you want to do it. For the award, I'm not sure. Maybe I'll hand out the award to the best contributions to the Disability Blog Carnival I'm hosting here.

The Up-Coming Disability Blog Carnival Is Here!

Just a brief note. The next Disability Blog Carnival will be here. Deadline for submissions is April 21, the carnival will be put up on April 24. The theme is 'Abuse'. If you scroll down to the very bottom of my blog, you'll find the link for submitting, or you can email me by taking my blog's name (abnormaldiversity) and adding @yahoo.com to it.

Social Identity

The next Disability Blog Carnival theme is 'The Hardest Part'. I was thinking about it, and decided I didn't want to interpret 'hard' as 'difficult', because that's standard. I wanted to do something different.
Bill Choisser has an online book about prosopagnosia here. I found it among my printouts yesterday and was reading it again, and noticed how he describes identity. One aspect he discusses is 'core identity' - cores are generally hard, so that's the connection. Pretty tangential, I know. I like being tangential.
I have a regular pattern of treating whatever I'm reading as if it doesn't relate at all to myself. In fact, I don't tend to have a sense of 'myself' while reading. But when I reread things, sometimes I suddenly start thinking about how they relate to me.
Anyway, I started wondering what my own identity would look like with that model. I'm female, so my personal identity (what you actually are) would be female. I consider myself female, as opposed to being transsexual or genderqueer or something, so my core identity would also be female. But maybe close to the border, because being female is not as significant to my identity as it seems to be for most. My personal identity is in my core identity, because I'm fine with who I am, but maybe towards the border rather than squarely in. Actually, my core identity is probably very small, only slightly bigger than my personal identity, because I consider myself very unique.
Type is acceptable mating partners. Therefore, my 'type' is nonexistant, because I have no interest in sex with anyone. As for my tribe, it's several parts. One is 'developmentally disabled people', another is 'highly-educated intellectuals'. Or no, on reviewing the definition, it's probably only developmentally disabled people, and my immediate family. It crosses both genders. My personal identity is towards the edge of my tribe, and my core identity is half in and half out, because I don't fully feel a part of any group.
My core identity is certainly hard. It's hardened and solidified to stand the assaults my teachers gave to it, as they tried to force it to move. It's the hardest part in this diagram, the part most resistent to change (except maybe personal identity). I mentioned above that my core identity is small, that's because it curled up for protection. It's strong because it had to be.
And another meaning of hard - this was difficult for me, to figure out where these things are positioned. The hardest part to figure out was probably my tribe. I don't have much of a clear idea what that even means.

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.

If Autistic was Neurotypical

First, to clarify - neurotypical basically means 'the majority neurological type' or reasonably close to that. The neurological type that our society considers neurotypical will, for the sake of clarity here, be called 'allistic', which means 'other-oriented' or focused on other people. It's important to note that some allistic people are not neurotypical in our society (such as Down Syndrome people).
With that sorted out, my question is - how would allistic people be viewed by a society where the typical brain type is some form of autistic?
Firstly, chances are allism would be considered a spectrum, from severely allistic to only mildly (mildly allistic people might be what we'd call mildly autistic, actually). And the spectrum concept would understate the variability. Variation in things which in our society are just considered 'personality' or other stuff would be used as determinants of severity of allism.
Autistic people would function better. They may even be people who, if born in our society, would find it very difficult to speak and/or do basic self-care activities who in that society would have no difficulties. The few autistics who did have trouble functioning would for the most part have trouble for reasons that were not considered part of being autistic, even if in our society their difficulties would be considered due to autism.
In contrast, allistic people would have trouble functioning. In fact, some allistics who in our society would do just fine might have difficulty with skills considered just as basic as speech and self-care. Allistic people we'd consider to have a disability of some kind as well as being allistic would in that society be considered simply allistic, or perhaps described as having 'syndromal allism'. Some syndromes would have markedly different effects simply because of the different genetic background and environmental context. For example, people with Down Syndrome would be less often allistic than they are in our society - though some of the typical effects of DS would contribute to a higher rate of allism among them than the general population (for example, DS people are, on average, slightly more sociable).
Allistic people would be viewed as unhappy, partly because they are upset by things considered normal (and many things autistics are normally upset by would be accomodated and prevented to the point of being invisible) and partly because it must be 'so horrible' to be disabled. People would describe an allistic child's separation anxiety in ways that totally distort what's actually going on, or even if they figure out a fairly accurate explanation they'd view it as indicative of a deficit of some kind. There would be treatments designed to help with separation anxiety, completely ignoring the adverse effects on attachment. Attachment would likely also be impaired simply because the autistic parents don't understand their child and the basic reciprocal interaction between parent and child is more difficult as a result. Things due to the problems allistics have in an autistic society would be viewed as inherent to allism, though in our society they're only rarely, if at all, seen.
Some allistics might say that allism isn't really a bad thing, and would get accused of opposing chemotherapy and so forth. Some allistics would say that their kind of allism is fine and even valuable, but we don't want the severely allistic people. Allistics might try to imagine a society designed for people like them - how much like ours would it be?
This is my entry for the Disability Blog Carnival, which has the theme 'If...'

Online blog survey

I found an online blog survey, which I've decided to fill out.

1) Do you think the blogosphere can contribute towards highlighting the issues and concerns of the persons with disability and the terminally ill? If yes, how? Definately, by providing a medium for marginalized people, including disabled people, to express their views in a public way.
2) Can blogs be part of efforts to promote an Inclusive Society? I hope so. Hopefully, by reading my blog, people will be made to think about the unquestioned 'truths' about disability and related issues.
3) What inspired you to start your blog? Amanda Baggs' blog, I think. I can't really remember why I started it actually.
4) What are the challenges you are facing in promoting your blog? I don't think many people read my blog, or if they do, few comment. I'm not sure why - do I not blog often enough?
5) Do you consider the blog as one of your achievements? If yes, how? Not sure what that question means. My blog is being referenced as evidence of my abilities as a homeschooled student for the university.
6) Can blogs help raise resources? How can blogs be sustained over a period of time? Most blogs are free to maintain. Kassiane recently got money to pay for meds and such by people asking for it on blogs.
7) Is blog an effective medium through which you can connect to the persons with disability across the world? If yes, how? Somewhat. I connect more by yahoo groups, especially AutAdvo.

Blogging Meme

ABFH has a blogging meme that I've decided to do.

1. Is there a regular time of day when you compose your posts? Not really. I don't have internet access at home so I do it at the university, generally between 8:30 to 5:00 or so. And generally not right after 8:30 - not even if you take into account the time it takes to get to the computer.

2. Do you prefer to write a certain number of posts per week (or per month)? I try not to write more than one a day, and if I've gone a long time (not sure what I mean by 'long time', it's just a feeling in my mind of the thing getting distant) I try to write something. Mostly I just write when I get in a blogging mood.

3. Are you more likely to write a post when you're happy about the topic, or do you mainly blog when you feel like ranting? Generally I write when something sticks in my mind that I want to write about. If it seems to me like a blog kind of topic, that's where I write it, otherwise maybe on my laptop or something. It's a special kind of mood, not related to how I feel about the topic. I feel the same way when I'm putting together a puzzle and I suddenly realize where a certain piece goes. I fit together ideas the same way, and if it's fit together enough I can write it. Otherwise I just put it aside. Generally blogging ideas are ready to write as soon as I have them, but fiction stories may not be.

4. Do you write from notes or an outline, or are your posts mostly spontaneous? Spontaneous. I find myself talking to myself about an idea and realize I could blog about it. I try to include what relevant ideas I said to myself or thought of, otherwise just let it flow.

5. Do you try to maintain a central theme for your blog and avoid random topics that don't fit the theme? Sort of. I mostly blog about disability rights, but if something else strikes me as bloggable, I'll write it. Occasionally I jot down stuff I don't want to forget on my blog because it's most handy when I'm on the internet.

6. Are there any interesting rituals associated with your blogging? Generally I first check over my most recent posts for new comments, then log in and start writing. I have a ritual of checking Amanda Baggs's blog as soon as I get on the internet that day, occasionally multiple times a day.

Telethons and Self-care problems

Two unrelated comments today:
Firstly, the Protest Pity anti-telethon blog thing is up. I didn't know about it until today, but apparently it's an annual thing similar to blogging against disablism day.
Secondly, I'm researching self-care problems in high functioning autistics. I'm thinking of maybe getting together evidence regarding self-care problems in people diagnosed as Asperger Syndrome in order to argue that the 'lack of significant delay in self-care' criteria of AS is misleading. So far, I've found the following articles: one comparing AS and Conduct Disorder in teenage boys, finding that, according to their parents, 50% of the AS boys and 95% of the CD boys were independent in basic self-care (washing, toothbrushing), 5% of AS and 40% of CD boys had no problems with decisions about self-care (eg deciding when to eat), 15% of AS boys and 80% of CD boys had normal telephone skills, 5% of AS and 35% of CD boys could plan their own travel, 0% of AS boys and 25% of CD boys were independent in buying major items, 5% of AS boys and 70% of CD boys had no trouble planning their own routine and 0% of AS boys and 60% of CD boys were independent in leisure activities outside of home and one studying AS or HFA adults that found that out of 16 individuals, 1(AS) had a regular job, 1(AS) was a university student, 3(1 AS, 2 HFA) had a sheltered job, 5 (2 AS 3 HFA) attended a day center and 6 (5 AS, 1 HFA) had no occupation, the one with a regular job was the only one not living off of public assistance, which in 13 of them was some form of disability pension, 9 lived in their own apartment, 1 (the student) with their parents, 5 in a group home and 1 in the hospital. Not much available, but the few studies done show significant difficulties for older 'high functioning' autistics. Note that I don't really think there is a significant difference between the different diagnostic groups or functioning levels, but if they're following the DSM, the AS people should have normal or near normal self-care skills. Instead, they have difficulties with are definately significant, in the sense of needing assistance or accomodation.
Anyway, I just thought of a way to link these two subjects together. One big problem with telethons is that they're raising money for a cure/prevention while providing nothing towards helping actual disabled people live well, with their needs met and their 'voices' (even if not actual speech) heard.

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).

Why do Holidays Have to be the Same For Everyone?

The current disability blog carnival, #20, is themed On Holiday. This is my blog entry on this topic.
A sibling of a boy with lissencephaly, a brain anomaly causing very severe cognitive disability, cerebral palsy and seizures, said the following about his brother:

"Tomorrow is my brothers birthday. He will be 7-years-old. We bought a caramel cake, but he won't be able to eat it. He will have 7 blue candles on his cake, but he won't be able to blow them out or make a wish. He will have birthday presents wrapped up in wrapping paper, but he won't be able to unwrap them."

This is a common complaint by family members of developmentally disabled people, it seems. I've heard plenty of parents complaining that their child doesn't understand or enjoy a holiday or doesn't do it 'right'. This is viewed as a sad thing and a source of frustration. Very often they keep doing it the conventional way, hoping 'this time' their child wil react the 'right' way. In fact, higher functioning children may be expressely taught 'social skills' related to how to act on holidays, such as 'open all your presents and thank the gift-givers before playing with your new toys.'
But why should they do it that way? What are holidays for, anyway? Really, most of them are all for being with those you care about, getting a break from everyday stresses and having a good time. When the disabled child and/or their family is getting stressed out by the holiday, it defeats the purpose. If your child doesn't like standard birthday or Christmas presents, for example, don't buy them. Get something your kid likes, even if it is a string to twiddle with or a shiny ribbon to wave around. Why waste money getting something your kid probably won't want?
In general, if you go away from the idea of holidays and 'having to be' a certain way, you can find ways to fully include the disabled person. I was anxious about having an 18th birthday where the only guest was a 10 year old severely autistic kid because it 'didn't fit how birthdays are supposed to be' but I did it anyway. And I had great fun, even though my guest spent all his time watching fans and didn't eat any birthday cake. Even though I was focused more on his enjoyment than my own. I had fun doing interactive fan-stimming, playing tin whistle to him and chatting with his mother. If, instead, I'd tried to have a 'standard' 18th birthday, I'd have had to invite strangers or distant acquaintances, because I don't have any friends my own age. I'd have had my birthday invaded by NTs who'd expect me to fit in. I'd have ended up on the sidelines, watching everyone else have fun and waiting desperately for it all to be over. And that's a best-case scenario.
What about if I just didn't invite anyone, because I don't have any 'standard' friends? Well, I did that for several years, and I found that birthdays didn't feel very special - almost like just another day, except I got a nice treat and some new things. It was nice, but I wanted more. I wanted a memorable, special occasion for a birthday party. And I got one, but it was not a standard 18th birthday.
In general, this is just another application of a general thing - you should change how you do things to fully include your disabled child, rather than trying to force-fit them into the standard. The same principle applies to teaching, playing, discipline and numerous other things. Why must they do it the standard way? They aren't standard people, and that's just fine. Put them in the round hole, not one of the square ones.
[Edit: Unfortunately, I didn't notice that the Blog Carnival #20 is already over! Oops!]

Different Ways of Going About Things

Diary of a Goldfish is hosting the 4th Disability Blog Carnival. I don't really know what a Disability Blog Carnival is, but from what I understand, the topic is 'different ways of going about things'. That's a topic I think I can write about now. I'll write about homeschooling, and the unusual kind of education I'm getting, which is so much better suited to me than school.
In school, you are expected to learn a certain way, a way that is not how I learn. The things that were really hard for me were: being with nasty kids all day, not showing my work in math because I a) was doing different steps and b) hate to write (typing is fine, but writing on paper too much tires my hand out so I minimise what I write), having to switch subjects so often and especially having others dictate to me what I had to learn.
I'm now homeschooled. This is suited to me because I learn best alone or with people I like, doing things in whatever way works best for my mind instead of following strict steps, obsessing on one thing until I feel it's time to move on and choosing my own things to learn. I can only motivate myself to put out the effort to learn something if it interests me. If it doesn't interest me, all that happens is that I get frustrated, annoyed and bored.
There are some problems with homeschooling for me right now. That is that since I'm not following any curriculum, people can't do what they seem to enjoy doing - look at my credentials and get a rough idea of what I know. If you know what medical students are taught, and you meet a medical student who knows what Flourescence in Situ Hybridization is (a test to make certain 'marker' genes light up), you know they will probably also know a pile of other stuff taught before or around the same time as that. Since I learnt about FISH by researching Angelman Syndrome in my free time, it came along with other knowledge, not the stuff taught in medical school.
In terms of math, I teach myself math formulas when I need them. I figured out by myself how to determine percentages, and do it by 100/n*x. That's also how I determine IQs, not the ma/ca * 100 you see in psychology textbooks (I like to buy used psychology textbooks to read for fun) but 100/ca * ma.
There is no problem for me right now. The potential problems are in the future. I'll try to get into college, but if they don't accept me or they do but I can't fit with the system, I'll do what I want to do with my life other ways. I'm working on a behavior survey into Kabuki Syndrome which I'll submit to a medical journal when it's done. You don't need a medical degree to publish in journals, you just need to produce work that is of good enough quality.
I'm also writing books. You don't need any credentials to write books. I'm writing fiction as well as a book for parents of kids with chromosome anomalies (and anyone else who wants to know more). Lately I've been researching bats a lot, an old obsession revived so I can write about part-bat, part-human people in a story I'm working on. I'm also thinking of getting jobs such as babysitting disabled people, or maybe working in a petstore.
Had my parents clung to the idea that there's only one way to get an education, I'd be much worse off now. The emotional cost of being in school was too much for me. I might evn have commited suicide - I know I considered it. So it could be literally true to say that by homeschooling me, my parents saved my life.
Ettina
PS: I sound less mature in this one than I usually do. I don't know why. My writing style sometimes spontaneously changes. Sometimes it's clearly because of what I've been reading, like when I'm writing like a doctor after reading a medical journal, but other times I don't know where the change comes from.