Aspies For Freedom

Of course how much people can contribute monetarily and such is extremely varied, and some people need full-time services. But I still think it is not good for anybody to look on such people as a burden. Not good for any disabled person to be described this way. (And even the most nonverbal among us may well be listening and understanding.)

While I started speaking at the expected times, it has always been difficult for me, and stress wears down my energy and makes it more difficult to speak, sometimes to the point where I can't at all, and more often to where I can only speak single words, or two-word phrases. Of course, I'm 18 now, so I have made a lot of progress with speech, despite not having much help from professionals until recently (even now it's not much, but still...). When I was in elementary school, I rarely spoke, as it was very noisy, and it was next to impossible for me to participate oftentimes. I had a 1-5 hour tantrum virtually every night at age 7 - 10.

In kindergarten and first grade, I would mostly not speak, and certainly rarely initiate speech, and I spent most of my time stimming and not understanding the spoken words of the kids and adults around me (stress also disrupts my understanding of spoken language, which is tenuous to begin with), and all I could discern at those times was that the teachers were mad at me and would sometimes yank my arm. Luckily, I didn't have much sense of my body or coordination of my movements, so my instinctual efforts to hit anyone who touched me mostly failed. I spent most of my time in these first school years staring at a wall rocking, or sorting beads, or really doing anything other than what I was supposed to be doing.

I had a lot of times where I would cry, or scream (most of the time I would scream was with the lunch ladies). I also banged my head a lot. Basically, if you just saw me at school, or when I was really stressed at home, you'd see someone who acted very much like one of the kids in the Autism Everyday video. If it weren't for my known ability to speak, and the fact that my dad is also on the spectrum (one thing he told me when I was young before knowing about autism was that he'd rock back and forth repeating "mommy come here!" and when he told me this at a young age I mimicked it ), and if we'd had more money or known something more about the so-called milestones, then they might've had a diagnosis earlier, and perhaps a more gloomy "prognosis".

My mom certainly was exasperated, particularly as she worked hard at her job and had two other kids to take care of (I was the youngest, and it took me longer than my siblings to learn to do things like get dressed, wash or brush my hair, fix food, and later, to shave). My oldest sister was also quite a handful in her younger years, though in different ways. But I know she wouldn't think of it as being devastating (we have had conversations). Perhaps if she had been given such a negative view (i.e. make them close to normal or institution) as professionals often give or leave unaddressed upon diagnosis, then it would have seemed devastating to her. I wasn't diagnosed until fourth grade, though, and many of my actual difficulties (such as with speech) went completely unnoticed.

Since I had a relatively high IQ, and could talk, and was given the Asperger diagnosis, it was described that my greatest problems were in making friends (true that I was socially not practiced, but this mainly had to do with the fact that so few people accepted me that I didn't have much the same opportunity to socially interact (when I started high school at a school where the students are much more accepting of quirkiness, and I wasn't made fun of for pacing in English class, I made friends the first day). To this day my difficulties in speech are often ignored (except for the acknowledgement that I sometimes don't understand idioms, which is really the least of my difficulties) by the people who work in special services at my high school.

So while I understand why some families would see it as devastating, and don't really blame them (I blame the professionals who give the wrong signals to parents and media), it's not really an accuract reflection upon the condition of being autistic or being part of an autistic person's family, no matter how much or little services they need. It's a reflection, rather, on a society where parents are too often given misleading pictures and the diagnosing people fail to correct or even reinforce these, for whatever reasons.

It wasn't so much like I had an urge to avoid the tasks, as I might have an urge to avoid clutter, and the hitting thing (both self and others) was more a response to stress and frustration - whether because someone was being mean to me and not understanding, or because it was chaotic environment and I couldn't do anything about it, or if I was trying to punish myself for the "bad" behavior. I still self-injure, but with far less frequency than I used to (it used to be many times per day; now it's maybe once every day or so).

Mostly why I wouldn't participate in the activities was because I didn't understand the spoken instructions, and it was chaotic with noise and movement. I also have and have had difficulty in initiating speech to seek help, to let someone know I don't understand (in fourth grade it would take an hour or two to figure out how to get the teacher's attention and ask for a pencil so I could write - I lost my pencils a lot). Most of the time I would just stare at the wall, but sometimes we'd have some beads or shapes or something left over from another activity, and I would interact with these things that I could understand more. (Also, I just plain like sorting things - much how a kid might like to color in coloring books more than do math, I preferred sorting shapes to writing and using scissors.)

I didn't really get any training, formal or informal, except if you count my mom physically making sure I didn't hit myself or others (on a few occasions during this I have hit them, but I was so sorry about it and sad that I would cry and apologize profusely). I started diverting it sometimes to things like hitting and throwing remote controls and video game controls (my parents had to restrict access to video games because I would get frustrated and do these things, but I didn't really care for video games too much anyway). As I got older I would start to divert it to hitting pillows (at my dad's suggestion) and stomping my feet (some of the hitting and headbanging is because I have so much energy, and that was just the default way of releasing it when I can't just get up and run, such as during class or at home doing homework).

So it has dissipated significantly, but well I guess my parents' suggestions to divert it combined with their expression of their concern for me hurting myself count as an informal type of training. Probably if we'd had some outside help then I could've gotten where I am faster than I have.

Rocking and other stims haven't really dissipated, in fact, if anything, I do them more, however discouraged I have been from doing them. It's one of the ways I process information and handle stress, and I'm pretty sure everyone would agree that it's a better way of handling things than injuring myself. Each year of high school, by the second semester things go on a decline, and my grades slip to nearly failing, and I do my best to bring them back up before the semester's end. I keep an extraordinarily busy schedule, one that many NT students would find overwhelming, so it makes sense that I can barely cope with it, but this certainly wouldn't be possible without stimming. I used to suppress them, to little good effect, but that really was counter-productive to my goals.

I'm not sure what you mean by anti-social, and even if I did, I'm not sure how well I could answer that. I wasn't really given a genuine opportunity to be social unfettered until the 9th grade. I have undergone bullying from name calling to assault and battery from kindergarten to 8th grade, and under this cloud of intimidation, I had few opportunities to socialize, and not the energy when the opportunities did arise (I was too busy dealing with the bullies and the school work).

So I don't know if I would've avoided or sought socializing. Mostly I sought to socialize, but I knew by age 6 that even people who acted like they wanted to be my friend were likely just pretending so they could make fun of me behind my back. It seemed pretty pointless, though there were a few people I would consider friendly (unfortunately, one of these people in 8th grade turned out to be a jerk and called this guy in history class a *** because he obsessed with trains - I felt it was equally an insult upon me, aside from the offensiveness of her term).

In fact, I made very many attempts to communicate and reach out socially to my peers. Most of these were rebuffed, however, because of my "freak" status, and I decided that these people weren't worth my time, and in the process developed my own prejudices against people who have more typical interests and modes of expression (such as excessive talking), as well as prejudicing myself against anything stereotypically feminine, and these didn't start breaking down until in high school I met accepting people who were more typical in these ways, and I realized that just because the people I knew in elementary school were materialistic, spoiled bad apples, doesn't mean everyone is.

I started typing before I went to school. There was a Sesame Street computer typing program, and it typed in big letters, which helped especially as this was pre-glasses, and I didn't know how to use a big font or zoom in Microsoft Word, and didn't notice that my vision was blurry until my parents realized I had to squint and get up close to things before reading them (as a baby my dad let me type random letters on his typewriter). So I would learn words. My dad would always write in his notebook, and I asked what the words were. I remember learning the word "I" that day.

I wanted to be an author and write stories, so this was my main motivation. That, and I couldn't convey in speech what I could by writing (by third grade I would write on my own essays about the school system, freedom of speech, and injustices I would face such as being forced to dance with the boy who had tried to strangle me and when he cut my hands with his nails and I ran off to the teacher about it that I was the one punished and made to go to the principal's office).

I also wrote about things like if there was life on Mars and the evils of political campaign ads that don't address issues and just try to make each other look bad. In fact, it's because of my writing ability that I was able to transfer from the school where the worst bullies would follow me to, so in fact this early emphasis on writing rather than speaking perhaps is what kept me from dropping out of school and having a positive high school experience instead - not that anyone should be put into this situation in the first place...

In the case of siblings, I think it's very important that they are made to understand and not to focus anger towards the autistic person because of things like not being able to go and do all the things they would otherwise. You can't stop siblings from having some resentment, whether there's an autistic person or not in the family, but certainly they should understand things like the autistic person isn't deliberately not doing the dishes, or whatever it is they can't do (like go to a loud event, or appear normal). My sisters always complained about having to do stuff that I didn't have to do. I don't think my parents really talked much about autism to them, except for later on (apparently my parents had misunderstood when they asked me if I wanted them to know or not, they thought I'd said, no, I don't want them to know. or something).

So I guess that's pretty much what I have to say about this. Hope it answers your questions.

not angry, but perplexed. If they are high functioning, why would they need so much expensive intervention? It doesn't make sense because surely what they would mostly need is understanding from the school system and that shouldn't cost anything.

I think somebody is making a lot of money out of autism.