Let me set one thing straight: There is such a thing as regression in adults with ASD. I don't care what the professionals say. There is. I have experienced it, and so have many other adults.
The fact is that I am currently experiencing it. I went to bed without words last night, as I frequently do... only today, when I woke up, they weren't back. My BSS typed with me. My CI did what she could so that I only had to shake and not and point (pointing has always been and remains unnatural for me).
The back-burner issue of needing AAC is once again very front-burner. It's urgent. Unless I am at home on my computer, I have no means of communication. My mom gets 5 texts a day, so I can have 5 exchanges with her, and that is all. Some of my staff doesn't text. When we go out, I have no means to communicate.
Please consider purchasing a copy of my book. If I can sell 19 copies, I can purchase a refurbished iPod touch and will have the communication I so badly need. I will even have voice output, which my computer does not have.
Consider buying a copy to give to a child's teacher, BCBA, aide, aunts, uncles, doctor, dentist. If just 19 people purchase a copy, I will be good to go. If there is ANYTHING I can do to thank you (answer a question, help with a behavior issue, offer my perspective, color you a picture, send you a poem on an autism-related topic of your choice, anything!) please just shoot me an email and my brain is yours for the picking.
Book link is here.
Friday, May 13, 2011
Wednesday, May 11, 2011
I'm in a poetry mood
On perspective
Beneath the sun,
Beneath the skies,
Beneath a tree,
A stone there lies.
Dark and drity,
From dusk till dawn,
There in the grass,
Upon the lawn.
Many years
Will come to pass,
Before anyone sees
The stone in the grass.
One sunny day
A human comes
It matters not who she is,
Nor what she's done.
But she steps on the stone.
And open it cracks.
Kicked to the side,
Just one half.
Now nudged into the sun,
The lonely brown stone
With brilliance casts light,
Colors,
Brilliance.
The world now aglow.
One inch to the left,
Or one to the right,
The sun would have missed,
The stone never shone bright.
In case the meaning is unclear here (I'm not sure; it's perfectly clear to me!), the stone is the child with autism. On the outside, all you see is difficult behaviors, imperfect communication, and puzzling repetitive speech and behaviors. But if you find out how to work with that child just so, how to teach him in a way that truly reaches him... well, you may stumble upon brilliance.
Beneath the sun,
Beneath the skies,
Beneath a tree,
A stone there lies.
Dark and drity,
From dusk till dawn,
There in the grass,
Upon the lawn.
Many years
Will come to pass,
Before anyone sees
The stone in the grass.
One sunny day
A human comes
It matters not who she is,
Nor what she's done.
But she steps on the stone.
And open it cracks.
Kicked to the side,
Just one half.
Now nudged into the sun,
The lonely brown stone
With brilliance casts light,
Colors,
Brilliance.
The world now aglow.
One inch to the left,
Or one to the right,
The sun would have missed,
The stone never shone bright.
In case the meaning is unclear here (I'm not sure; it's perfectly clear to me!), the stone is the child with autism. On the outside, all you see is difficult behaviors, imperfect communication, and puzzling repetitive speech and behaviors. But if you find out how to work with that child just so, how to teach him in a way that truly reaches him... well, you may stumble upon brilliance.
Tuesday, May 10, 2011
Why the dichotomy?
Why the dichotomy?
I am often
Only who I'm not,
But you don't care
So long as I have words for you.
You can't understand
(Through no fault of your own?)
That who I am
Is not the me you see.
Do you want to work on that?
They ask.
No, I don't;
I want to be free.
But in this world
The only freedom
Is to be
Everything you aren't.
You, too.
I am often
Only who I'm not,
But you don't care
So long as I have words for you.
You can't understand
(Through no fault of your own?)
That who I am
Is not the me you see.
Do you want to work on that?
They ask.
No, I don't;
I want to be free.
But in this world
The only freedom
Is to be
Everything you aren't.
You, too.
Monday, May 9, 2011
On empathy
Is it in the DSM? I don't think so, but don't quote me on that. It's a commonly accepted belief that people on the spectrum do not have much empathy (the ability to feel what another person is feeling... sympathy, on the other hand, is feeling sorry for a person).
According to Mom, when I was a young teenager she caught a few isolated glimpses of empathy from me... but that was 10 years ago, and she hasn't seen any in a long time.
And to be honest, I wasn't sure I felt any, either. I mean, I kind of function "all about me." I guess that sounds selfish, and maybe it is, but... well, that's how I am despite putting forth great effort to feel for people. I can mechanically ask if you're feeling better after being sick, or I can ask my one staff if her back is hurting from walking too much, but really, it's not so much because I care as because it's what I'm supposed to do.
I asked Mom in the car how old I was when I first asked "how are you?" and she said, "You still don't." Well, yes and no. I certainly ask Leigh what's up (because I want to know what she's doing) and I ask Chloe how she is, but beyond that, I think Mom's probably right. Mom pointed out that I want to socialize, but when someone tries to start a conversation by asking me how I am, I say "fine" and walk away rather than reciprocate in any way. But then... chances are that I don't care how they are and don't really want to talk to them, unless it's one of my "inner circle" people.
Anyway, along these lines, feeling frustrated for myself for not really feeling any empathy, it was time to get Elsie Bo her medicine. I almost (and sometimes do) cry every time I have to give it to her because she hates it so much. And I can feel what it's like to be her and how awful it is. I am deeply empathic for my cat. Also, I feel very deeply for the cats in the shelter, stuck in their cages.
Not sure how to extend this to feeling for people... but I guess cats are a step in the right direction.
According to Mom, when I was a young teenager she caught a few isolated glimpses of empathy from me... but that was 10 years ago, and she hasn't seen any in a long time.
And to be honest, I wasn't sure I felt any, either. I mean, I kind of function "all about me." I guess that sounds selfish, and maybe it is, but... well, that's how I am despite putting forth great effort to feel for people. I can mechanically ask if you're feeling better after being sick, or I can ask my one staff if her back is hurting from walking too much, but really, it's not so much because I care as because it's what I'm supposed to do.
I asked Mom in the car how old I was when I first asked "how are you?" and she said, "You still don't." Well, yes and no. I certainly ask Leigh what's up (because I want to know what she's doing) and I ask Chloe how she is, but beyond that, I think Mom's probably right. Mom pointed out that I want to socialize, but when someone tries to start a conversation by asking me how I am, I say "fine" and walk away rather than reciprocate in any way. But then... chances are that I don't care how they are and don't really want to talk to them, unless it's one of my "inner circle" people.
Anyway, along these lines, feeling frustrated for myself for not really feeling any empathy, it was time to get Elsie Bo her medicine. I almost (and sometimes do) cry every time I have to give it to her because she hates it so much. And I can feel what it's like to be her and how awful it is. I am deeply empathic for my cat. Also, I feel very deeply for the cats in the shelter, stuck in their cages.
Not sure how to extend this to feeling for people... but I guess cats are a step in the right direction.
Saturday, May 7, 2011
Defies expectation? You tell me
I don't know how to write this post. In fact, I'm downright scared to write it, knowing what may happen because of it. You might never want to hear from me again.
I can understand why they say what they do. They say, "Oh, no, you don't need a cure because you're so high functioning!" "You can't really have those kinds of meltdowns!" "You're so articulate and self-aware!"
And when I tell them, "No, I'm really not." "Yes, I really do." "Only when I'm sitting at my computer," they don't believe me.
I know you see the words and hear intelligence and assume the corresponding behavioral difficulties must be mild. Not really autistic, right? Super-high-functioning-Asperger's, maybe, right? And, truth be told, if you catch me on the right day and if I'm faking it hard enough, you might see that too.
But that's all lies, all fake, all pretend. It's limited. It ends. Then I come home (I'm super lucky if I'm home before I truly fall into the autism... I seem to be losing my ability to "fake it" for as long as I need to be out anymore), and reality hits.
Tonight, after coming home from a fairly slow-paced, relaxing day with lots of breaks, once again someone accused me (wrong word?) of being sooo high functioning.
And, people, I've had it. I turned on the webcam and went back to chatting with Chloe.
I can understand why they say what they do. They say, "Oh, no, you don't need a cure because you're so high functioning!" "You can't really have those kinds of meltdowns!" "You're so articulate and self-aware!"
And when I tell them, "No, I'm really not." "Yes, I really do." "Only when I'm sitting at my computer," they don't believe me.
I know you see the words and hear intelligence and assume the corresponding behavioral difficulties must be mild. Not really autistic, right? Super-high-functioning-Asperger's, maybe, right? And, truth be told, if you catch me on the right day and if I'm faking it hard enough, you might see that too.
But that's all lies, all fake, all pretend. It's limited. It ends. Then I come home (I'm super lucky if I'm home before I truly fall into the autism... I seem to be losing my ability to "fake it" for as long as I need to be out anymore), and reality hits.
Tonight, after coming home from a fairly slow-paced, relaxing day with lots of breaks, once again someone accused me (wrong word?) of being sooo high functioning.
And, people, I've had it. I turned on the webcam and went back to chatting with Chloe.
I hope, in posting this, that you'll learn a few things.
1. I don't lie.
2. You'll see that awesome gifts and challenges can coexist in one mind and body.
3. Watch your presumptions. You never know what's inside (in the case of "real life") or outside (in the case of the internet).
Surprised? I hope not, because this is what I've been telling you is there all along, right? For the record, even my therapist would be surprised by this, because I don't let her see it either... and yes, I sent her the video, because she needs to see it.
Thursday, May 5, 2011
Think Outside the Box!
I am a diagnostic challenge, to say the least.
Currently, I carry an Asperger's diagnosis from my neuropsych (who is probably the most knowledgeable but hardly knows me); one of autistic disorder from my psychologist (who is probably the most well-read and knows me best); and, one of the all-encompassing-yet-generic "ASD" or "PDD" from various other tests I've had done.
And the ultimate diagnostician? The one who really knows me? That'd be my mom, and she says that she can see both, or maybe either, that it depends on the day.
And that's just the autism! Forget about the anxiety disorders, the likely personality disorder, the mood disorder, the eating disorder... yeah, lots of -NOS flying around these parts.
But I'm excited for two reasons. Well, one reason, two consequences.
The DSM-V is well underway. That's the reason.
The first consequence of that reason is that a new eating disorder will be added that fits me to a T: avoidant/restrictive food intake disorder. Basically, I cannot stand the texture of and thus refuse to eat entire food groups worth of food, such as fruits and all vegetables. I was never much for meat and recently went vegetarian. Oh, but I don't eat seafood either. Yes, I get enough protein; yes, I take a vitamin; yes, I find ways to sneak in the healthy stuff (such as V8 Fusion and peanut-butter-banana-protein-shake-enhanced-sugar-free-low-fat-ice-cream). Still, I'm quite limited and generally can't go out to eat unless it's for breakfast (eggs and a pancake, please) and basically can't do any sort of dinner party on any terms. So, I take consolation in that there is at least a descriptor for someone like me... other than "weirdo."
Secondly, part of the diagnostic confusion that is me will be reduced due to the elimination of Asperger's in the new DSM. Look here for the new criteria. I hear that a lot of people will lose their diagnoses under these criteria, and that worries me. For me, well, I had a hunch and confirmed with Mom... if you look at the severity criteria, I'm not mild but I'm not moderate. Again, it depends on the day, and yet again, I see diagnostic wars going on with my team. There are days, even weeks, where by no stretch of the imagination would you call me mild anything... then there are bits of time where I'm like, "What autism?"
(For the record. when asked if the autism is ever invisible, Leigh says, "Yeah, when you're trying to hide it on a good day." Fair enough).
Part of me wonders when the criteria are going to start to reflect real people living real lives, you know? Oh well. We're partway there.
Currently, I carry an Asperger's diagnosis from my neuropsych (who is probably the most knowledgeable but hardly knows me); one of autistic disorder from my psychologist (who is probably the most well-read and knows me best); and, one of the all-encompassing-yet-generic "ASD" or "PDD" from various other tests I've had done.
And the ultimate diagnostician? The one who really knows me? That'd be my mom, and she says that she can see both, or maybe either, that it depends on the day.
And that's just the autism! Forget about the anxiety disorders, the likely personality disorder, the mood disorder, the eating disorder... yeah, lots of -NOS flying around these parts.
But I'm excited for two reasons. Well, one reason, two consequences.
The DSM-V is well underway. That's the reason.
The first consequence of that reason is that a new eating disorder will be added that fits me to a T: avoidant/restrictive food intake disorder. Basically, I cannot stand the texture of and thus refuse to eat entire food groups worth of food, such as fruits and all vegetables. I was never much for meat and recently went vegetarian. Oh, but I don't eat seafood either. Yes, I get enough protein; yes, I take a vitamin; yes, I find ways to sneak in the healthy stuff (such as V8 Fusion and peanut-butter-banana-protein-shake-enhanced-sugar-free-low-fat-ice-cream). Still, I'm quite limited and generally can't go out to eat unless it's for breakfast (eggs and a pancake, please) and basically can't do any sort of dinner party on any terms. So, I take consolation in that there is at least a descriptor for someone like me... other than "weirdo."
Secondly, part of the diagnostic confusion that is me will be reduced due to the elimination of Asperger's in the new DSM. Look here for the new criteria. I hear that a lot of people will lose their diagnoses under these criteria, and that worries me. For me, well, I had a hunch and confirmed with Mom... if you look at the severity criteria, I'm not mild but I'm not moderate. Again, it depends on the day, and yet again, I see diagnostic wars going on with my team. There are days, even weeks, where by no stretch of the imagination would you call me mild anything... then there are bits of time where I'm like, "What autism?"
(For the record. when asked if the autism is ever invisible, Leigh says, "Yeah, when you're trying to hide it on a good day." Fair enough).
Part of me wonders when the criteria are going to start to reflect real people living real lives, you know? Oh well. We're partway there.
Wednesday, May 4, 2011
Talk of a cure
I'm not so eloquent tonight (by the way, I just had this all typed out, and my twerp of a computer deleted it, not to be found with control + z. If it does it again, I'm giving up.). I had Star (MH case manager) for an hour this afternoon. Then, I drove for 45 minutes, including on the highway, down to the Pitt study. Did computer work which boggled my brains. Then sat through a long, boring group, which I mostly spent spinning in my chair. Then drove back home in traffic. So, that, my friends, is how you get "done."
But something's bothering me. I have a secret. I thought maybe you'd want to know.
In my online world (which, I hate to say, is far richer than my "real" world), I am once again faced with a dichotomy in the autism community.
Camp A, mostly parents of so-called "low functioning" children, is all about curing autism.
Camp B, mostly the "Aspies," as I call them, is all about neurodiversity. Some even claim that Asperger's is the next step in human evolution... yeah; no comment there.
I've long preached to each his own, but I have a confession to make: I kind of bristle when talk of a cure comes up.
First of all, I'm not as so-called (I refuse to use such terms without a qualifier of some kind) "high functioning" as a lot of the "don't touch me with your cure" people are who are out there. I have been lurking and posting around Wrongplanet again, and I hate to say it, but there is just no comparison between the lives most of those people describe and the one that I lead.
I mean, I lose my words with almost daily frequency. I rock, even in public. I bang my head, I bite my hands, I have ugly meltdowns. If in a spinny chair, I spin and spin and spin. I stim verbally with my repeated phrases, though oddly enough that is confined to my apartment. At this point, I can't go just about anywhere without my mom or staff. Not even to stop for gas.
And yet, I repeat: Cure ignorance, not autism.
By saying that autism needs to be cured, you are telling me that a very, very fundamental part of who I am needs to be eradicated. And what would be left? You could not cure the autism and expect to have anything left. Kill autism, kill me.
That said, I know I need a lot of help, and I know that that translates into that I cost a lot of money, made even worse because I know that I'm not working... and, well, I struggle with all of that. And that is why I seek treatment, therapy, ABA, community inclusion, all of that good stuff. So that maybe, someday, I will be able to work.
So, yes, by all means, supplement, treat, build, ameliorate... but eradicate? To what end, I ask?
Far be it from me, or from anyone, to tell any parent that his or her child should not be cured. That's not up to me, and I will not tell anyone else what I think they should do. I don't like it one bit when others try to push their beliefs on me, so I'm not about to do it to anyone else.
But me? No thanks. Cure ignorance, not autism.
But something's bothering me. I have a secret. I thought maybe you'd want to know.
In my online world (which, I hate to say, is far richer than my "real" world), I am once again faced with a dichotomy in the autism community.
Camp A, mostly parents of so-called "low functioning" children, is all about curing autism.
Camp B, mostly the "Aspies," as I call them, is all about neurodiversity. Some even claim that Asperger's is the next step in human evolution... yeah; no comment there.
I've long preached to each his own, but I have a confession to make: I kind of bristle when talk of a cure comes up.
First of all, I'm not as so-called (I refuse to use such terms without a qualifier of some kind) "high functioning" as a lot of the "don't touch me with your cure" people are who are out there. I have been lurking and posting around Wrongplanet again, and I hate to say it, but there is just no comparison between the lives most of those people describe and the one that I lead.
I mean, I lose my words with almost daily frequency. I rock, even in public. I bang my head, I bite my hands, I have ugly meltdowns. If in a spinny chair, I spin and spin and spin. I stim verbally with my repeated phrases, though oddly enough that is confined to my apartment. At this point, I can't go just about anywhere without my mom or staff. Not even to stop for gas.
And yet, I repeat: Cure ignorance, not autism.
By saying that autism needs to be cured, you are telling me that a very, very fundamental part of who I am needs to be eradicated. And what would be left? You could not cure the autism and expect to have anything left. Kill autism, kill me.
That said, I know I need a lot of help, and I know that that translates into that I cost a lot of money, made even worse because I know that I'm not working... and, well, I struggle with all of that. And that is why I seek treatment, therapy, ABA, community inclusion, all of that good stuff. So that maybe, someday, I will be able to work.
So, yes, by all means, supplement, treat, build, ameliorate... but eradicate? To what end, I ask?
Far be it from me, or from anyone, to tell any parent that his or her child should not be cured. That's not up to me, and I will not tell anyone else what I think they should do. I don't like it one bit when others try to push their beliefs on me, so I'm not about to do it to anyone else.
But me? No thanks. Cure ignorance, not autism.
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