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.
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/
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.
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.
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|
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.
|» Part-time AAC|
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.|
|» Things that don't get talked about...|
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*.
|» Is there a place for me?|
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.
|» Thomas McKean|
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.
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