Monday, June 30, 2008
A box, a box, mmm what's in a box??
Is this my autism or would anyone feel this way?... We moved this weekend and my husband kicked me out of the moving process, mostly because I am pregnant, missing a disc in my back and can't pack a box unless everything in it belongs together. Which one of these is not like the other, which one of these is not the same? That sort of thing. So, anyway all our boxes arrived today and my husband is at work, they say things like master bedroom, bath, studio.... do you see the problem? It's nice to know where they go, but it would be nicer to know what's in them. How can I unpack a box, if something I need to put stuff on is in a box at the bottom of the stack? I have decided that I am a big girl and I will just do one thing at a time. Today it is cleaning the cabinets in the kitchen so I can unload my dishes, which I packed properly in the box they came in. Innocuous enough ;O).
Thursday, June 26, 2008
Newby, newby.
In my last post I ranted and raved and then spent hours editing. After watching the interview on Good Morning America last week, I have been very confused. It was a great thing in the end though. It drove me to blog, to search others' blogs and realize there is a whole world of Autism that I don't know. Having just discovered that my world is autistic, I am glad that this confusion has driven me to find the other side. And really, that's what it is.
I think the confusion lies in the way the asking for help has been presented. At this point, I feel like the words pride, proud and awareness are not the best choices. They emitt an attitude that is superior. Let me say, I don't feel superior when my husband puts something away in the kitchen where it doesn't belong and it stops me dead in my tracks. Until it is put right, I can't continue. I understand the simplicity of the problem, but it is not in me to find a solution. I have to call him and say, "Where is it?" If he doesn't know, then the kitchen is off limits to me and anything I need to do until he comes home and fixes it for me.
Feeling like an outsider today, in regards to reading all your blogs and writings, I realized that the communication problem regarding the Good Morning America story could lie in the editing room and the way Good Morning America chose to present the interviews. I think it would help the "movement" if we focused on adding legislation to the current ADA laws, that are aimed toward Autistics. This would increase awareness amongst the people who really affect our lives... ie teachers, care givers, social workers, first responders. I know that would help me. It seems though that by applying the word disability to autistic life... well I get the feeling that if we said that there would be a sense of defeat. Like by admitting that my "superpowers" are disabling is somehow a contradiction or admittance of defeat. But I feel disabled when my brain washes down the sides of my head because the kids have been so loud that I can't process any other information and resort to curling up in my bed. It doesn't matter at that point that my IQ is so high or that I can play flute in tune. All that matters is that I am paralyzed and until my husband comes home to take the kids somewhere else, that is how I will remain. Unavailable.
It was very interesting reading and surfing blogs related to Autism today. It was very clear that there are two waves of bloggers. Parents, who are not autistic and whose sites I couldn't even read. With all the "Autistic Pride" logos and information on every square inch of the page, I had to just move on. And HFA's. Those sites were very different from the parents' sites. It was also interesting to me that there seems to be a battle between the two. I ran across the term "autistic enough" a few times. I know I have not been autistic enough in situations. That has been a huge detriment to my development. But, I was a parent of an HFA before my own autism was noticed. So, I understand the helplessness that comes with a child who was "normal" and then was gone. I was lucky that I was able to help my son to become verbal again and social to a degree. Now he is like me. But after reading so many sites today (well, yesterday... I have not slept ;o), I am not convinced that it was the diet that helped. I just feel grateful as a parent that I know my son will be like me and that he will have the choice of an independant life. I know in time we'll understand more about autism and it's causes. But for now, it would be nice if we could all realize that fighting for legislation that will increase awareness of our special needs is something that we can do best together. I may not be autistic enough to speak for those who cannot speak for themselves. But, those that cannot speak would benefit the same as I would from social services for Autistics. And, care givers of those that cannot speak would benefit as well.
It seems like this is the agenda, but as it was my first experience today reading, the agenda was quite lost amongst all the declaration of pride and acceptance.
I think the confusion lies in the way the asking for help has been presented. At this point, I feel like the words pride, proud and awareness are not the best choices. They emitt an attitude that is superior. Let me say, I don't feel superior when my husband puts something away in the kitchen where it doesn't belong and it stops me dead in my tracks. Until it is put right, I can't continue. I understand the simplicity of the problem, but it is not in me to find a solution. I have to call him and say, "Where is it?" If he doesn't know, then the kitchen is off limits to me and anything I need to do until he comes home and fixes it for me.
Feeling like an outsider today, in regards to reading all your blogs and writings, I realized that the communication problem regarding the Good Morning America story could lie in the editing room and the way Good Morning America chose to present the interviews. I think it would help the "movement" if we focused on adding legislation to the current ADA laws, that are aimed toward Autistics. This would increase awareness amongst the people who really affect our lives... ie teachers, care givers, social workers, first responders. I know that would help me. It seems though that by applying the word disability to autistic life... well I get the feeling that if we said that there would be a sense of defeat. Like by admitting that my "superpowers" are disabling is somehow a contradiction or admittance of defeat. But I feel disabled when my brain washes down the sides of my head because the kids have been so loud that I can't process any other information and resort to curling up in my bed. It doesn't matter at that point that my IQ is so high or that I can play flute in tune. All that matters is that I am paralyzed and until my husband comes home to take the kids somewhere else, that is how I will remain. Unavailable.
It was very interesting reading and surfing blogs related to Autism today. It was very clear that there are two waves of bloggers. Parents, who are not autistic and whose sites I couldn't even read. With all the "Autistic Pride" logos and information on every square inch of the page, I had to just move on. And HFA's. Those sites were very different from the parents' sites. It was also interesting to me that there seems to be a battle between the two. I ran across the term "autistic enough" a few times. I know I have not been autistic enough in situations. That has been a huge detriment to my development. But, I was a parent of an HFA before my own autism was noticed. So, I understand the helplessness that comes with a child who was "normal" and then was gone. I was lucky that I was able to help my son to become verbal again and social to a degree. Now he is like me. But after reading so many sites today (well, yesterday... I have not slept ;o), I am not convinced that it was the diet that helped. I just feel grateful as a parent that I know my son will be like me and that he will have the choice of an independant life. I know in time we'll understand more about autism and it's causes. But for now, it would be nice if we could all realize that fighting for legislation that will increase awareness of our special needs is something that we can do best together. I may not be autistic enough to speak for those who cannot speak for themselves. But, those that cannot speak would benefit the same as I would from social services for Autistics. And, care givers of those that cannot speak would benefit as well.
It seems like this is the agenda, but as it was my first experience today reading, the agenda was quite lost amongst all the declaration of pride and acceptance.
Wednesday, June 25, 2008
Autistic or Quirky?
Autistic and Proud? I know I struggle with this thought. Sometimes, I find it hard to feel I am different from the "normals" around me. I see them say things that hurt others and are inappropriate... they have a medical diagnosis too! Empathy disorder. I know other people who rarely look others in the eye, they are shy. Then I see the "classic" autistic person, who doesn't speak and causes injury to themselves. So, who am I to feel proud, disabled or different? I am misunderstood. My brother can't be around me without saying, "That's inappropriate. Don't say that. Don't do that." The look people give me when I share my thoughts, it's like I just committed some horrific crime. Proud? I can't be. Inside, I care about these people. I'd like to talk to them in a way that they can see that. I feel like every waking moment of my life revolves around a conscious effort to be appropriate, to conform to current social cultures in order to fulfill my desire for human contact. It's exhausting. And the reward is slim as human contact is fleeting and usually leaves me feeling detached, abnormal and like I don't belong amongst this race.
Check out this interview from Good Morning America http://abcnews.go.com/GMA/OnCall/story?id=5033594
What's very cool about being on the high functioning side of ASD? My superpowers. I love them. I just wish my body could handle such amazing ability. I love my IQ -128. I wish it were higher. Maybe next year. I can't live without my 20/15 vision. It's fun that I can be tickled from across the room. That's the best way to tickle me... though I still might cry out in pain and pee my pants. I love hearing frequencies other people can't. I can also tolerate higher frequencies of sound that make other people cringe. The downside, I hear everything that is said about me in whispers. The upside? If you play flute with me, we'll be in tune! That's rare. Oooooohh, and taste, I love tasting every seasoning, feeling every texture in the food I eat. I wish I knew more about all the spices available so I could name each one. And make an Indian Curry by taste! And of course smell, which is sometimes a blessing and other times I would like to... well lets just say I can live without some of the smells in this world.
If there was a cure, a treatment... it would be hard to be "normal" after living this way for so long. But I say that, given that I can communicate my basic needs. I can't communicate my deepest desires, but if I am sick I can tell you exactly what is wrong. When I break a bone... you will know... immediately. As a parent, I know what it's like to care for someone and know something is hurting them and they are unable to tell you. It's horrible. It rips the lining from your abdomen and all your inside fall to the floor. And as an adult with ASD, I don't feel proud about my lack of connection. It's starvation. I live on a fast from human connection, which I don't understand and even when people tell me the right thing to say and do... I am still alone in my cave and then exhausted from trying so hard to fit in.
What I find the most annoying with the '"Autistic and Proud" movement...is the improper comparison to the Civil Rights movement amongst blacks and gays. Autism or neuro-diversity, is not at all comparable to being black or gay. The proper comparison would be to compare us to the Deaf adults. Black people have no problem communicating with others. Gay people do not have trouble utilizing the language of their community. WE DO. WE, as ASD adults, have an impaired social response. Some days, it doesn't seem like a disability. Some days it does. Some of us aren't even aware there is a difference. Other's are institutionalized.
The "Autistic and Proud" movement is comparable to the deaf community's feelings that being deaf is not a medical condition. It will be the same in our community as it is in the Deaf community. There will be those of us whose choose to defy the desires of the "normals" who care about us. We will demand they not change us. And there will be those of us who feel disabled by our Autism. We will admit our defeat and seek assistance with this human condition. (As it is my existence as a human that is debilitating, not my Autism.) This will divide us. And that will not change the Autistic community, because we are individually packaged and not intended for resale.
I do appreciate the notion that as a society there needs to be proper education for our needs. School was very hard for me and if there had been someone who noticed early on that I was autistic and needed a different approach, my experience would have been drastically different. That did happen for me later on in jr. high and life changed drastically. I still don't know who was responsible for it, but one of the staff at my junior high requested that I be placed in the honors system... and the world opened up. It seems to be a contradiction admitting we need special services and comparing this movement to the civil rights movement. This indicates that we believe we are not different. But, if we need special services like a different educational environment... then we are different and therefore need not be treated like the majority. In fact, treatment like the majority I think would be detrimental to our progress and ability to live on our own as adults.
Check out this interview from Good Morning America http://abcnews.go.com/GMA/OnCall/story?id=5033594
What's very cool about being on the high functioning side of ASD? My superpowers. I love them. I just wish my body could handle such amazing ability. I love my IQ -128. I wish it were higher. Maybe next year. I can't live without my 20/15 vision. It's fun that I can be tickled from across the room. That's the best way to tickle me... though I still might cry out in pain and pee my pants. I love hearing frequencies other people can't. I can also tolerate higher frequencies of sound that make other people cringe. The downside, I hear everything that is said about me in whispers. The upside? If you play flute with me, we'll be in tune! That's rare. Oooooohh, and taste, I love tasting every seasoning, feeling every texture in the food I eat. I wish I knew more about all the spices available so I could name each one. And make an Indian Curry by taste! And of course smell, which is sometimes a blessing and other times I would like to... well lets just say I can live without some of the smells in this world.
If there was a cure, a treatment... it would be hard to be "normal" after living this way for so long. But I say that, given that I can communicate my basic needs. I can't communicate my deepest desires, but if I am sick I can tell you exactly what is wrong. When I break a bone... you will know... immediately. As a parent, I know what it's like to care for someone and know something is hurting them and they are unable to tell you. It's horrible. It rips the lining from your abdomen and all your inside fall to the floor. And as an adult with ASD, I don't feel proud about my lack of connection. It's starvation. I live on a fast from human connection, which I don't understand and even when people tell me the right thing to say and do... I am still alone in my cave and then exhausted from trying so hard to fit in.
What I find the most annoying with the '"Autistic and Proud" movement...is the improper comparison to the Civil Rights movement amongst blacks and gays. Autism or neuro-diversity, is not at all comparable to being black or gay. The proper comparison would be to compare us to the Deaf adults. Black people have no problem communicating with others. Gay people do not have trouble utilizing the language of their community. WE DO. WE, as ASD adults, have an impaired social response. Some days, it doesn't seem like a disability. Some days it does. Some of us aren't even aware there is a difference. Other's are institutionalized.
The "Autistic and Proud" movement is comparable to the deaf community's feelings that being deaf is not a medical condition. It will be the same in our community as it is in the Deaf community. There will be those of us whose choose to defy the desires of the "normals" who care about us. We will demand they not change us. And there will be those of us who feel disabled by our Autism. We will admit our defeat and seek assistance with this human condition. (As it is my existence as a human that is debilitating, not my Autism.) This will divide us. And that will not change the Autistic community, because we are individually packaged and not intended for resale.
I do appreciate the notion that as a society there needs to be proper education for our needs. School was very hard for me and if there had been someone who noticed early on that I was autistic and needed a different approach, my experience would have been drastically different. That did happen for me later on in jr. high and life changed drastically. I still don't know who was responsible for it, but one of the staff at my junior high requested that I be placed in the honors system... and the world opened up. It seems to be a contradiction admitting we need special services and comparing this movement to the civil rights movement. This indicates that we believe we are not different. But, if we need special services like a different educational environment... then we are different and therefore need not be treated like the majority. In fact, treatment like the majority I think would be detrimental to our progress and ability to live on our own as adults.
Thursday, June 19, 2008
A Changing View?
I read this article today on CNN about whether or not babies should be vaccinated. I found it very interesting because the tone of the article is neither right or left... but somewhere in between. It makes me wonder if we are beginning to see the change. I am not sure how I feel about vaccines and their relation to Autism. The research that supports a link, doesn't fit my standard on research. However, the research that does not support a link is not definitive by any means. I tend to be overly logical in my thought processes and the evidence we see in life does not lead me to believe that vaccines are the root of the problem. My parents generation was vaccinated to a very similar degree as our generation. Some of their vaccines were much more dangerous than vaccines today are because they were "live" vaccines. And yet, we don't see Autism in that generation to the degree that we see it today.
I am very curious to see what comes of this changing attitude. I hope that it'll allow for the proper research to be done so that we can determine without question how and why Autism develops and how to treat it.
On a personal note:
My son received his MMR at the scheduled time and immediately began to express the classic symptoms of Autism. I took him to the doctor, who acknowledged that we could be looking at an Autism diagnosis. Then he baffled me, he wanted to wait and watch, and see what happened to my son before diagnosing or attempting any therapy or treatment. By the time I had gone to see him about it, my son had be self stimulating (spinning) and had not made eye contact in one month. I was shocked. I didn't know about myself at this point, but having two small children I knew that Autism needed early treatment. Unfortunately, we were in a small town and he was the best pediatrician there. And there were no DAN Drs. So, I researched myself and decided that the only safe thing to do was put my son on the Autism diet immediately. We followed it strictly, no exceptions for 6 months. After the first month... all the symptoms went away. He did not recover his vocabulary and I would say remained in a "high function" status. Eventually, we began adding some of the omitted foods and his condition did not change. We still omit dairy and avoid wheat.
Related Links:
The CNN Article: Should I Vaccinate My Baby?
http://www.cnn.com/2008/HEALTH/family/06/19/ep.vaccines/index.html?iref=mpstoryview
Defeat Autism Now Site
http://www.defeatautismnow.com/
I am very curious to see what comes of this changing attitude. I hope that it'll allow for the proper research to be done so that we can determine without question how and why Autism develops and how to treat it.
On a personal note:
My son received his MMR at the scheduled time and immediately began to express the classic symptoms of Autism. I took him to the doctor, who acknowledged that we could be looking at an Autism diagnosis. Then he baffled me, he wanted to wait and watch, and see what happened to my son before diagnosing or attempting any therapy or treatment. By the time I had gone to see him about it, my son had be self stimulating (spinning) and had not made eye contact in one month. I was shocked. I didn't know about myself at this point, but having two small children I knew that Autism needed early treatment. Unfortunately, we were in a small town and he was the best pediatrician there. And there were no DAN Drs. So, I researched myself and decided that the only safe thing to do was put my son on the Autism diet immediately. We followed it strictly, no exceptions for 6 months. After the first month... all the symptoms went away. He did not recover his vocabulary and I would say remained in a "high function" status. Eventually, we began adding some of the omitted foods and his condition did not change. We still omit dairy and avoid wheat.
Related Links:
The CNN Article: Should I Vaccinate My Baby?
http://www.cnn.com/2008/HEALTH/family/06/19/ep.vaccines/index.html?iref=mpstoryview
Defeat Autism Now Site
http://www.defeatautismnow.com/
Wednesday, June 18, 2008
First Entry
It came to me in my not sleep last night that I can blog all my thoughts and knowledge regarding my existence as an ASD Adult. I have just recently discovered I am Autistic, I have been misdiagnosed in the past as depressed, and (believe it or not...) overly well adjusted. Huh?!!! Is that a real diagnosis? I was really baffled by this one. None the less, I knew I was still outside the realm of the rest of the human race.
I am a stay at home Mom. I have two kids, they are 3 and 2, and we are having another child in September. Mom is not the job for someone like me. Most days, I shut down midafternoon and all I can do is cry. I am not sad. I love my kids. But, all my senses are blowing up inside me. The kids are so loud and they are constantly touching me and calling my name. It's especially hard with the baby moving inside too. I know getting through the first year of breastfeeding will be the hardest trial yet. It's all too much. I would love to work more. It scares me to leave my kids in the care of someone else though, as most people I have met are insensitive and quite stupid. I am pretty sure my son is also ASD. My daughter however appears completely average.
My skill set includes, playing piano, french horn, flute and singing, modeling (mostly runway) and acting (a new skill).
I wonder how my life would be different if my parents knew I was autistic. The big question... would they have ensured my music training knowing that I would most likely have one interest and that would be my best bet at a stable adult life? Playing french horn has been my interest since I was eight. Something to think about I guess.
Well, that's all for now. I intend this site to be full of information on Autism as well as my own thoughts about the matter.
I am a stay at home Mom. I have two kids, they are 3 and 2, and we are having another child in September. Mom is not the job for someone like me. Most days, I shut down midafternoon and all I can do is cry. I am not sad. I love my kids. But, all my senses are blowing up inside me. The kids are so loud and they are constantly touching me and calling my name. It's especially hard with the baby moving inside too. I know getting through the first year of breastfeeding will be the hardest trial yet. It's all too much. I would love to work more. It scares me to leave my kids in the care of someone else though, as most people I have met are insensitive and quite stupid. I am pretty sure my son is also ASD. My daughter however appears completely average.
My skill set includes, playing piano, french horn, flute and singing, modeling (mostly runway) and acting (a new skill).
I wonder how my life would be different if my parents knew I was autistic. The big question... would they have ensured my music training knowing that I would most likely have one interest and that would be my best bet at a stable adult life? Playing french horn has been my interest since I was eight. Something to think about I guess.
Well, that's all for now. I intend this site to be full of information on Autism as well as my own thoughts about the matter.
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