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Philadelphia, PA, USA:
NBC 10 News Story
A father of a nearly two year old autistic boy was charged with murder. The boy died due to asphyxiation. Family members state that the father lost his temper after the baby "kicked" him. |
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I've moved from Live Journal to a proper blogging system. I imported all the old posts I've made here into the new site, but have not moved the comments.
Blog is at http://thiswayoflife.org/blog/
I also moved my main site while I was at it to http://thiswayoflife.org/ |
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I've had to communicate a lot this week, more than most weeks. That means my voice hurts to use now (doesn't take much, but I really overdid it), even with the amount of typing I've done.
The reason for this is that sometimes I choose to use my voice, even though I know it's going to be painful and require a lot more effort than typing, simply because it is the easiest way to get what I need at that moment, or because I happen to have the energy and ability to use it with relatively little effort at a given point in time. The problem is that these abilities and situations change very quickly. So in a minute or two, speech may not be a good option at all.
That's where the problem comes in - one that I've not really seen much written about, at least not in the context of communication. Switching between speech and typing (or vise-versa) is very difficult, even when it shouldn't be (I.E. the mode I'm currently using is becoming less efficient than the mode I should be switching to). I don't know why this is, but I'll continue to use my voice long past when I should have stopped, simply because that's easier than the switching (although once the switch would have been made, it would have been much easier from that point on).
It's also one of the reasons that in some situations, when I could use my voice physically I won't. I know if I start using my voice, switching back to typing is going to be very difficult, and I'm going to end up not communicating what I want to communicate if I do that.
The switch actually feels like nails on a blackboard - it's very disturbing to do the switch.
It sure would be nice to be able to switch back and forth without being disturbed in this way. |
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I watched an episode of Star Trek Next Generation earlier tonight. In it, Tasha Yar's sister asks Data, "Are you able to have friends?" When Data says, "Yes," she responds, "But you don't have feelings?"
Data of course answers that he doesn't have feelings, but can still have friendships.
Too often it's assumed that autistics don't have feelings, can't have friends, or may not want to have friends. Or, if this isn't the case, the assumption is that only "high functioning" autistics would actually want a connection with people. The guy that rocks in the corner of the room and has never said a word couldn't possibly want a friend...
Well, that's simply not true.
Clearly we have feelings. Why would we "tantrum" if we didn't have an emotional response? And why would some of our favorite things be our favorite things without emotions?
As for friends, too often I find that I give off the signal, "I don't want to meet anyone." In the past, I even believed this to be true about me - it was a mental self-defense against the incredible loneliness in my life, and I wasn't willing to let go of this defense until it was no longer necessary. I am someone that wants friends desperately - and needs them even - but sends out all the wrong signals, which people receive as "he wants to be left alone." Of course when they find out I'm autistic, they assume that must be the case.
Sure, some autistics talk about wanting to be left alone. Fine, I'm not going to argue. I do hope that it isn't just a mental self-defense mechanism like it was in me, but I do recognize that it might not be. So if someone doesn't want friends, so be it. But I do. And many other autistics do too.
I'm sick of hearing that we don't want friends or that we can't be friends with someone. Even the "low functioning" autistic could have a great desire for friendship. We might not want our friendships to look exactly like some NT's friendships look, but that doesn't mean we don't want someone to share an interest with or to laugh with or to simply know someone else gives a shit if you live or die. |
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Freedom is often defined as being able to do something - being able to express an opinion or being able to direct one's own life. These are all good definitions, but too often this type of freedom still seems to leave things out, or people think that someone else has it when they don't.
For that reason, I've used a different definition for a long time:
Freedom is the ability to fuck up.
Too often autistics are "protected" from being able to screw up their lives. Rules and regulations are put in place to keep the screw ups from happening, all in the "best interests" of the autistic.
But now I see that definition needs a bit of broadening.
Freedom also needs to be the ability to disagree, argue, yell at, or even kick out any given person in their life without the fear of not having some basic life need met. If they scream at a staff person and tell that person to never step foot in their house again, that shouldn't mean they don't eat.
We're a long ways off from giving people this type of freedom. |
| » Finished at FCI Summer Institute |
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I spent a week at the summer institute in Syracuse, after being invited to give a presentation one of the mornings (I talked about alternatives to real-time speech).
During the whole week, a few things struck me.
1. There is no doubt in my mind that FC is a means of valid communication. I know this is controversial, but there are people using FC for their means of communication – as much as that fact is inconvenient to critics.
2. People worked very hard this week to become better communicators. The sensory environment wasn’t ideal, people worked for long hours, and being in a new place with new people is of course stressful. That said, many made truly amazing progress, and even at the end of the week people were still working very hard on their communication. It looked exhausting, and I’m sure it was. I’ve rarely seen people working this hard.
3. There is a tremendous amount of emphasis among people in the FC community on creating communication that is obviously not being physically influenced by the facilitator.
4. People using FC are “all over the map” with regard to how much movement they can independently initiate.
5. Autistic people with speech have brothers among autistic people who don’t use speech.
Jul. 21st, 2006 @ 03:18 pm
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| » Part-time AAC |
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I'm about to give a presentation at an FC conference on part-time AAC use. I'm nervous. Communication is important. It's hard to get this right - it's hard to know exactly what people need to hear about communication, and explain it in a way that everyone understands. But I need to try.
Jul. 19th, 2006 @ 11:06 pm
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| » Things that don't get talked about... |
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I have a whole slew of health problems due, in part, to being autistic and lacking appropriate services (note this isn't a money thing - the services I need are simply not a routine part of society, free or for fee).
I have a whole problem eating. Everything from noticing I'm hungry to deciding what to eat to making food. In an ideal world, food would just show up on a plate in front of me 3 times a day, with someone asking once in a while, "Hey, how did you like that new dish you ate a few days ago? Should it stay on the menu?" I don't want to decide what to eat, shop, or anything else - each step makes it less likely I'll eat. And I really am not a picky eater (unlike many who say "I'll eat anything" and then balk at every suggestion you make for a dinner choice). This job *does* exist, but not in a form that is easily accessible by me right now, unfortunately.
I also have a problem with the doctor. It's hard for me to breathe right now. I was thinking it was due to my back problems, but now I'm not sure that it isn't just a short-term sickness. The problem I have is that I don't know what is worth making a doctor's appointment for and what isn't. I'd be there every day if I went in for things that bothered me physically. Most people seem to know what's important and what isn't, but I don't. Add to that all the complication of making appointments, explaining problems to the doctor (ideally in a way that will be *believed*), etc, and I just don't go.
Unfortunately these types of things are pretty common I think. But if you have the misfortune of not fitting the stereotype of someone who needs help with this (I.E. you work or live without staff, and you know how to do these things [even if you can't actually reliably *DO* them because of executive dysfunction]), then you are basically screwed. I shudder to think about how many people are doing even worse then me, simply because the help they need doesn't *exist*.
Jul. 17th, 2006 @ 05:04 pm
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| » Is there a place for me? |
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I do fairly well in the world. I hear others tell me how I'm "high functioning" and such, how I fit into the world well.
I don't. Someone looking on the outside might say that I do, but I know how I feel on the inside. It's sad, depressing even, to consider that I haven't yet found the place for myself.
I dream of living around and with people who are "my kind." A place where I just "fit", and where the fitting doesn't require the effort it seems to require everywhere. I want a place to rest. I want to be able to drop my guard, and be myself, without fear of judgment.
I suppose you can say I want a family. I want people close to me, to share with and enjoy the company of - and who enjoy my company. I dream of a place where I can go where I don't have to explain overload or stress, but instead on those hard days a plate of food just appears in front of me, brought by one of my family, who knows - just by seeing me - that now is the time for Joel to soak, to receive. And I long for the joy of being able to do the same for them on another day. I long to see love visible.
Will I ever find such a place on earth? I don't know. I'd like to be hopeful and think, SURE! There HAS to be other people like you who share this desire, who could actually be a family for you! But I'm not sure that this is the case. And that's sad.
I don't want a spouse, I don't want a child. But I do want a family.
Jul. 11th, 2006 @ 08:25 pm
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| » Thomas McKean |
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If you got here from the link on autistics.org, note that the editorial is in response to McKean's letter, not my response to it. I quote McKean's letter below - scroll down to the indented section.
For the record, I am diagnosed (age 4). I have no idea if the doctor was reputable in Thomas's eyes or not. The records have been lost and/or destroyed however, as the autism diagnosis was dismissed for many years in favor of others, such as mental retardation (age 5), giftedness (age 8), behavioral problems (ages 6-17), personality disorder (age 13), and others. So perhaps what I say is "self serving." So be it.
I'd also add that I have and will continue to speak out about ABA and the over-drugging of kids.
And that I'll fight for the right for the autistic adults to identify as autistic, even without the written diagnosis at the right age combined with the proper stereotypical childhood experiences and political views that Thomas seems to be demanding. But then again I don't see the hordes of faux autistics that Thomas and the curebies see.
Ironically I found Thomas McKean's book to express a lot of things about my experience that I've seen very few autistics write about (perhaps however both me and him are not autistic if the majority of autistics have different experiences! Yes, that's sarcasm)
I also fail to see the problem that Thomas sees with impostors in the community however.
I'm including the document attached by Thomas that was sent to me and many other people. It was a large enough list that I basically am considering it public information that needs to be examined in public.
( Read more... )
Jul. 2nd, 2006 @ 07:34 pm
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| » My house is getting clean! |
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I'm really excited (and scared). First the excited part though! My house is getting clean. I've been throwing out about two huge trash bags full of junk each day for about 2 and a half weeks - and now I'm really seeing some progress. I can actually walk from one end of the house to the other, there's actually a path through what was a shit-hole.
It's not anywhere near done, but I'm very happy to see progress, and I'm very happy to think that I might live in a house one day that is actually one that I enjoy living in. That's a wonderful thought, something that I didn't think was possible.
The scary part is that I don't know if I can manage this long-term. And the thought of it going back to the way it was is incredibly sad to me. I know when my house is messy, I end up depressed.
I'm also scared that I'll be able to keep the house clean, but at the expense of something like eating. That's no good. That's how the house got this bad (I felt food was more important than cleaning a house).
And the scariest thing is I know when I'm able to get stuff done like this, it's often just prior to a major crash. And I don't need that now.
Apr. 25th, 2006 @ 08:07 pm
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| » Enjoying my home |
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I need a clean house. But I'm a messy person - I can't keep things clean for long. In college, you couldn't see the floor of where I lived. My current house is slightly better than that, as I've been working at it over the last year or so. But it's still not clean, it's still cluttered, and it still makes me grumpy to even be in the house.
When I'm in a clean house, I'm happy.
I need a refuge that I can go to, a place where I don't have to worry about other problems (like how am I going to live in a place that is healthy).
So I need help keeping it clean. I know that, my friends know that, even my family understands that. But my home is my refuge - the thought of allowing someone in to help me clean it defeats the purpose of the refuge. I love friends coming and visiting (when my house is clean, which it hasn't been for years - I haven't allowed a friend to see my house in years, except for one exception - ONCE). But I know and trust my friends.
So I've spent some of the evening looking for how to go about getting housekeeping help. And in the process breaking down and being generally stressed out. This feels like a no-win situation to me - all possible outcomes lead to a breakdown.
Apr. 20th, 2006 @ 06:59 pm
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| » Scared |
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In managing finances, there's a general principle that can be very important. Essentially, if you need your current paycheck to pay your current bills, then you will have very big problems if something happens to that paycheck. You have no 'cushion'. That's why it's typically recommended that a person have a couple months of reserve available, to enable them to get through short term financial problems, like a switch in jobs or a problem with the bank (for instance they deposit your check in the wrong account).
I am starting to think life is very similar in general. Right now I'm running with no reserve. If something happens in my life, my finances may or may not be okay for the short term, but things like being able to eat and have a place to live won't be. It's not a financial issue, it's I simply can't do anything more than I'm doing in my life right now. And this is really scary.
It's even more scary when you are sick, with something that may cause problems for years to come. I don't know how I'll survive, much less manage my tasks. Certainly I'll try, but I see the outcome as very ugly - not that unlike someone who didn't have a little extra money in the bank and had a short term glitch in their finances. It might take years to recover. Or I might not ever recover.
The problem is that I don't think I'm alone in this. And that, because I have a good job, live on my own, etc, it makes it look like I can manage this and shouldn't need any help. After all, what makes me any different from my neighbors?
Apr. 15th, 2006 @ 07:09 am
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| » There but for the grace of God |
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There but for the grace of God
Often, autistics who speak out about how autistics are treated face criticism that they are only representative of a fraction of autistics. The exact fraction varies depending on who is doing the criticism, but usually it implies that the abuse/treatment/program/whatever the autistics are talking about may not be a good idea for those autistics in that fraction, but there are other autistics, ones that these "high functioning autistics," "internet autistics," "Asperger's persons," or whatever else, don't know anything about.
( The rest of the essay )
Mar. 12th, 2006 @ 08:17 am
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| » Oh, that couldn't be prejudice... |
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I was reading about someone who uses a wheelchair who was bullied.
I posted about it online and said this looked like a hate crime to me (a crime committed against a member of a minority group because the victim was a member of the minority group).
I got responses like, "Oh, it's probably just youth that caused the people to do that to the victim." As if being a dumb teenager means you can't commit a hate crime, nor act on the basis of hate instead of pure randomness.
Sure, this event *could* have been just random chance, and anyone that walked by might have been bullied in the same way. But I find that unlikely. Too often people try to make excuses for why something isn't prejudiced and wrong when it clearly is. (you also can assume that things are motivitaed by prejudice and/or hatred when they are not, too, but I find that's less common)
Feb. 14th, 2006 @ 11:12 pm
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| » Autistic Musician |
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Audio and short description of an autistic piano player (audio starts immediately after clicking)
You have to let it play a bit to see the whole thing.
What I don't like is the fact that the article starts with the "she is blind and autistic, but..." You always know what is coming after the "but" - it's something to prove that her life is worthwhile, even though she is disabled. That means her life would be less meaningful if it wasn't for the "but". Would you say, "He's homosexual, but he's very good at repairing cars"? Or, "She's black, but she has achieved a PhD in Mathematics!" Of course not - there is no reason a gay person couldn't be good at auto repair, nor any reason that a black woman would be bad at math.
There's also the fact that this woman counters so many prejudices about skills - that having one skill doesn't mean you have another, or vise-versa, that not having a skill in one area means you don't have a skill in another. Clearly playing piano is not dependent upon seeing or using language normally. But a lot of people assume these skills are connected. And when someone violates that, it's considered a "savant" skill, not a normal kind of skill.
I have a problem when our skills are only considered savant skills. It's not a savant skill for my musically able friend to be able to play a song after hearing it once - she's simply a talented musician, someone who has a combination of skill due to practice and innate natural ability. But of course people aren't surprised when an able-bodied and neurotypical looking person plays the piano well.
Just so that people don't misunderstand me, I think it is wonderful when an autistic is very good at a particular thing. I enjoy it even more when the thing they are good at is something like music, which requires creativity - something many consider us to lack! And I do think many of us have skills which are often unrecognized. That said, I don't think these skills, these "but...that person is able to do..." statements, make a person more valuable, nor do I believe in advocacy which argues for fair treatment of autistics because of these skills. I believe in fair treatment of autistics because we are human, and even someone who might not have any special skills (autistic or not) should be valued. That isn't denying the existence of autistic skills. It's recognizing human rights don't depend upon them.
Feb. 2nd, 2006 @ 06:43 pm
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| » Doctors & Autism |
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I have good health insurance, or so people who work with me say. I've never actually used it, so I have no idea how good it is.
Simply put, the medical system is inaccessible to me. Going to a doctor and saying, "This is wrong with me, fix it," or anything even remotely related to that, is impossible.
If only someone would ask me, someone who could interface with the medical world, "Is there anything that doesn't seem right about your health?" I could answer that. And I'd have a lot to say. But, no. I'm expected to (1) find a doctor's office that is taking new patients, (2) find an appropriate reason to see the doctor, (3) make an appointment, (4) get to the appointment at the right time on the right date, (5) interact with the receptionist, nurse, and doctor at the office.
In most of these, I'm supposed to be the one to initiate. I can't do that. I can't even initiate well enough to get someone to help me initiate!
This type of thing, just like the problems I have eating, is something I know other autistics share (not ALL other autistics, but SOME other autistics). Yet it's never talked about. We have problems with social interaction, reading non-verbals and social cues, language, imagination (truly a bogus one if I've ever seen it), sensory issues, controlling our emotions, and hundreds of other things. But "seeing a doctor" or "eating" (for reasons other than being a "picky eater") aren't ever discussed. Either can kill.
Even worse, if you work, especially successfully, it's assumed you don't have these types of problems, as you don't fit the proper stereotype. People have a hard time reconciling someone who has done quite well in his career with someone who has trouble with some very basic (to others) living tasks.
I really wish I knew what to do.
Jan. 27th, 2006 @ 12:33 pm
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| » What is offensive...and what isn't... |
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Today, I went and ate dinner at a friend's house. Overall, I enjoyed it.
But I was mildly annoyed - even offended - during one discussion, where everyone (but me) agreed that closing institutions is a bad thing. I think it is ignorance, that is, ignorance that there are other options for people who do need help and assistance - better options even. But it does bother me when I hear stuff like that, especially being a member of one class of people often institutionalized.
Later, however, someone said something which ended with, "even when you don't talk." Someone 'corrected' them and added, "he does talk, just using a device." I wasn't offended however when someone says I don't talk when I'm not using my natural voice. In fact, that's the way I phrase it!
Jan. 25th, 2006 @ 08:23 pm
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| » Exit Criteria & Autistic Advocacy |
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What do we want?
That's a critical question I don't think has got nearly enough attention, nor do I think there is anything even remotely approaching consensus. Until we answer that question, we're never going to what we want. It's hard to achieve something when you don't know what it is that you're going to achieve.
Jan. 24th, 2006 @ 07:09 am
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| » Bullying & Autism |
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In a group I'm on, I'm watching a group of autistics that is basically deciding to "gang up" on an NT who holds some particularly offensive opinions and seems to enjoy trolling autistics. Now this "ganging up" isn't going to change the NT's mind, isn't going to make the world better for autistics, and isn't going to help other people see that us autistics need understanding and a place in society.
No, it's just so that autistics can, basically, go after an example of oppression and abuse.
Sure, I understand the sentiment. I share it. But I don't believe the ends justify the means. We can win our argument on the basis of human rights, ethics, and well-reasoned statements. We don't need to do the cyber equivalent of burning down the meeting place of people who disagree with us.
I just get frustrated sometimes when I see this type of behavior. To be honest, it's something I would expect out of junior high bullies, not adult autistics. Personally I think ignoring this type of person (sure, moderators should kick this type off autistic advocacy and pride lists, I don't mean to imply otherwise) seems like a far more efficient way of living - at least when your reactions would be nothing more than vented anger that will accomplish nothing.
Jan. 23rd, 2006 @ 09:36 pm
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