Friday, August 22, 2008

mmm.... Like Grass.

Today I feel like grass. I have had this feeling twice this week as I have been mowed over and left standing stiff and mutilated while everyone around says, "It smells so nice."

First mowing of the week. On Sunday one of the girls from church, who is my age, approached me as we were all leaving and heading to our cars. She was like, "Hey, do you want to hang out some time?" This was strange... because never in my waking memory has someone approached me to see if I wanted to hang out. I told my husband about it... his response was, "It must be hard to be her. I bet she's really lonely." I thought about it and concurred. On Tuesday, I had on of those days. I woke up anxious. The sound of the kids was like a crushing steamroller on my existence. I couldn't escape the feeling of the world getting smaller. Everything was larger than life and impeding my ability to just breathe. So, when husband came home, through the constant tears that simply form and run down my face on these days I asked if I could just go out and wander for a bit. So, while I was out after I had sufficiently wandered and things began to seem usual again. I called her and said I was available for a drink or something. She was too, and we met at her place to have soda. It was an ambush. She was one of the few people that I made the mistake of telling about "the ASD". Apparently, having a terrible childhood she has been undergoing some therapy or counseling of sorts and wanted to let me know that there is hope for me. She told me I was lacking in my inability to have "connections" with others and it was because of my relationship with my mother. Which I disagree with, call it denial, call it Autism, whatever. She was insistent. The room grew smaller. My eyes were hot. I wanted to vomit. The idea of sitting in a room with someone and talking to them for an hour every week was terrifying... what was worse is I was stuck in this room with this head talking about my mother. Who despite her lack of "Betty Crockerness" has not offended me in the least with her mothering skills. I turned her off and when there was a break in the blades, I left. When I came home husband informed me he was sleeping on the couch to see if it would help to alleviate some of his back pain. So, I retired upstairs in my lair with a book about the SARS virus. Besides the the bedspread that my husband likes, my room is totally oriented to my need for soothing and simplicity in design. Its warm. Tan and brown, with white and off-white. The fabric is all just right and my white phalen orchid is just the perfect visual to allow me to drift to the places I like to drift to. Its fake so it never smells as the leaves decay and fall off... which they never do. I was totally alone. The rest of the house was dark and I could slide into my cocoon alone never fearing that my husband would reach over and change my environment by touch or temperature. I was irate. I felt like grass.

Today is Friday. Thank God right? No, the lawn mower came out again today. My first born has a speech delay. Today was the screening for the preschool which offers services for children with delays and disabilities. It was held in the cafeteria. No attempt was made to make it acoustically child friendly. There where toddlers running every where while adults (therapists and teachers) held individual interviews, testing and assessing the children. It was complete chaos. The teacher that "did" us is a friend of mine. I was overwhelmed and had a hard time focusing on the questions. I know she didn't notice. I kept looking for a reason to leave. But, he needs this so I was pretty stuck. Finally, we left the center of the echo room to a quiet room with no other children for the hearing test. Grass. Freshly mutilated and smelling pleasant to others. New room. Vision Test. It was determined that he had a speech delay. We made an appointment for a full evaluation and left. Half an hour later I realized I had been so frantically chewing my gum that my jaw hurt. The tears were coming in and out of my eyes. I had to drive across town to bring some painkillers to husband, who forgot to bring them to work. My hands were shaking. The membranes around my cells felt as if they were all going through lysis. I was grass. Luckily, the kids were exhausted from their first "school day" and wanted to take a nap. So, I retreated to my lair, crawled under my comforter and stared at my orchid as my mind wondered to the farthest reaches of the imagination. I fell asleep.

Monday, August 18, 2008

A Misunderstanding?!!

So, background information. I am 8 months pregnant. We just moved and I moved my prenatal care from a large HMO to a midwife. She just got my records from the HMO. I was very happy with the move because I was feeling like "they" were treating a different pregnancy than the one I was having. "They" (the doctors and nurses) kept pressuring me to take tests for conditions which I had no risk factors for and no symptoms of. "They" also wanted me to schedule an induction as they had classified this pregnancy as high risk.

More background info. This is my third child. My first two were born at home (on purpose) at full term, healthy, with no complications. I am a Group-B carrier, which means that antibiotics are usually administered as a standard in the hospital, I treated the group B at home with both pregnancies. Turns out... that neither child would have even been exposed because with both pregnancies my water did not break until the babies crowned. I also labor very quickly (less than 6 hours with both). I had a lot of contractions and began dilating very early with both of them, never enough to actually 'push' me into labor. I am 5'9" and weigh about 135 (pre-pregnancy). I used to weigh closer to 150 but broke my back and lost about 40lbs to muscle atrophy... which I have tried and tried to regain... but after 10yrs... its gone, I have accepted it. I am happy to keep my weight up to 135 which is a challenge. If I am not careful, like eating more than everybody at the table, I can easily start dropping weight. I also work as a model. I am not famous, I don't make a lot of money, but its fun and inconsistent. I only work with people I like more than once... and people I don't like, I just don't work with. I have an agent, they pay me, I pay taxes.

So, the midwife who is now handling my prenatal care... gets my records from the HMO. She says, "they've got you classified as high risk". I tell her, "I know... and the whole story..." She says that's not all... they say you are a 'possible eating disorder' and that you are a "model". Oh, more info about my midwife... I know her because she is the mother of my friend, another Ford Model. So, she is very aware of my work and knows I am not a delusional anorexic who believes that if I starve myself I will someday be a working model. Anyway, she found this very amusing that with quotes around model and assumption that I have an eating disorder they obviously did not believe that I was serious when I answered the occupation question.

I am so upset about this because it is not the first time a doctor has tried to diagnose me with an eating disorder... oh, my records also stated that I was obsessed with food. I am obsessed with food... I LOVE IT! I love to cook it, cut it, knead it, wash it, taste it and consume it. I love to know the chemical make-up... fats, carbs, sugars, fibers, how much vit A? vit D? any Riboflavin? I love food. I count calories for fun. I play games with the numbers in my head. I am a walking encyclopedia when it comes to nutrition and diet. Americans have such a ridiculous relationship with food that the word diet has totally lost its meaning and so when a 5'9" 130lb woman says diet... it is immediately assumed she is anorexic. Diet is like the word metabolism... it includes everything you put in your mouth. Just like metabolism includes every metabolic process, like peeing. People never think of that. My friends think I am crazy because I have in my head calorie counts for just about every food that is in my usual diet... fruits, vegetables, pasta, rice... ooh, love rice, basmati, jasmine, brown, short, long, wild...beans. I am not big on animals (its the texture.), so I don't really know a lot about calories for them, just the basics like fat content, vitamin content etc. Anyway, I can look at just about any plate of food and come up with a calories, vitamins, fiber, etc. and be pretty accurate. I am just now starting to count fast food calories... which are astounding by the way. I don't eat much fast food so I just pick up some info here and there. AAhhhh, I am getting off point.

So anyway, it bothers me that I am constantly fighting this "possibility of eating disorder" thing. I can't remember a doctor in my life that didn't immediately think I had an eating disorder. I am thin, but not that thin. Usually, I am a size 6. But when my midwife told me "they" had written that I am "obsessive" about food.... it clicked. It's not that I am thin, it's that food is an interest for me.... so the minute a doctor mentions food, I go off and spout out all this info I have about food in my head. They don't see that I am autistic and rambling... they think I have an eating disorder. So, how am I supposed to get competent medical care when doctors are constantly misinterpreting the information I have? I am autistic... I spend hours thinking about food. I am the same way with drugs and herbs. It fascinates me that we can put things into our body that affect our metabolism in so many ways. Diet Coke for instance. Zero calories in 12oz. Doesn't that blow anyone else away? How did they do that? I won't continue that line of thought ;O). So, anytime I talk to a doctor and they give their opinion on a drug or treatment, I always have one of my own. The problem is most doctors are busy doctoring and don't have time to research new drugs and treatment... they get an overview from a salesman and make opinions based on that. To find a good doctor you have to find a "teaching" doctor. They are at "teaching" hospitals and universities. There's other criteria too, but this is a good place to start. Since they are so busy doctoring... they are totally confused when non-biased info is presented to them via this overly talkative patient. I hope that with a diagnosis, maybe it'll help. But given that they can't see my Autism, I am not confident that the medical community will ever be able to offer me care I can use... simply because they can't see my Autism. And, they (generally speaking) don't realize that some Autistics can talk, and talk. So, I am beginning to think, I will always be diagnosed with an eating disorder, and possible drug problems. Because I know more than I should about those things. I have no idea how to cope with that possibility. I hate it... It makes me angry, but I know that the more I try to clarify... the more 'they' will believe I have these disorders.

Tuesday, August 12, 2008

Once again, I question normality...

I have been way into Tennessee Williams the last few weeks. My husband picked up a book called "Notebooks" for me to read. It's a collection of his journals from 1936-1981. It's is most intriguing most notably because he seems to have had insomnia and an anxiety disorder. It intrigued me to think about all the little pieces of the Autism Spectrum others have and yet are not Autistic.

So, what is normal? Is there a person out there who doesn't have some sort of "disorder"? We now have so many labels and diagnoses that I wonder if it's even possible to be disorder free. The latest one that has come to my attention is "Empathy Disorder"... meaning you are not a very sensitive person. Given that I am generally odd... my assessment would be that 99% of people have this disorder. Though I realized my perspective is skewed.

I just read Dr. Chew's latest blog about mitochondria disorder (find here http://www.autismvox.com/mitochondrial-disorders-common-in-the-general-population-but-what-about-for-autism/) and this furthers my thought process on disorders. The more I learn about Autism (despite its great help to my functionability) the more I wonder how long Autism has been filling our gene pool and if there is any "molecule" in this pool of the world that is not in some way affected by Autism Disorders/Symptoms. Just a thought.

Another interesting thought.... how much of my Autism Symptoms am I passing to my children as behavioral responses instead of neurological responses? Like when I have a "meltdown" or "zone out" my children learn this behavior. I have started noticing my son "zoning out" lately when there is a lot of conversation going on at the dinner table. It doesn't strike me as a symptom the way he does it, it strikes me has a learned behavior. He is doing his best to stay quiet so that Mommy and Daddy can catch up at the dinner table. When it's his turn to talk, he jumps right in.... and when his sister talks out of turn, he jumps right in to let her know it's Mommy and Daddy's turn. Just a thought.

Monday, August 4, 2008

It's amazing what is normal!

In my last post I talked about the things that affect me that I realize are not normal... Shortly after posting I was reading Asperger's United and realized I forgot about all the things that I have shifted into the normal/must adapt folder of my head.

A 15yr boy was describing what it meant to him to have Autism... he mentioned the foundational things that I have forgotten are not normal. He spoke about feeling like he didn't understand the language of society, and misunderstanding people and having to sort out all this info that is new and strange everyday. Wow! It brought back so many memories, recent and ancient. I forgot that my inability to decipher social behaviors is the reason I have the other problems. I feel like I just adjust and I only remember that I am socially incapable when my husband or a friend points out to me that I have responded poorly to a particular situation.

We went to a birthday party last night. I was so anxious. It's the presents. They weren't even mine, but it scares me to think about getting things I don't know what to do with. My Mom always said that when you get a present you smile and say Thank-you, no matter what you think about the present. This is such a stressful thing for me. It's terrible to get something that is going to clutter up my house, or that I really wouldn't use... and what is the rule on how long you have to keep the present before you can donate it, give it away, sell it or find some other way to get it out of the house? Anyway, I am glad it wasn't my b-day. That is why I don't have parties, the people that know me get me enough stuff to keep me anxious for the next year, a party would exponentially increase my problems. I have recently started requesting that people don't bring gifts to my kids birthday parties... it's nice because then we only get a few... I should think about that next year. OH!! I could ask people who feel the need to buy something for me to donate to a charity in my name. mmm, I wonder if they'd actually do it?

Tired today. But the weather outside is gorgeous, so I don't want to go back to bed. We went out for a bike ride this morning. The bed is calling louder and louder.

Wednesday, July 30, 2008

What does it mean to live with Autism?

Seems like a simple question... but somehow I can't really describe it. I have noticed that everyone seems to be a little different, having a few issues or symptoms that I don't have. For me it's like having...

panic issues, Like when we are out and the given soup of stimulus drives me into a whirlwind and I have to leave or I start to shake and hyperventilate. I can't respond to anything anyone says and if I don't leave the situation early enough... I won't be able to think clearly enough to figure out that I need to leave.

anxiety issues, This one feels a lot like panic, but somehow very different. It's like a wind-up toy, I get all wound up and then instead of doing some cool spinning trick, I snap. When I snap, I cry and rock and if you make a noise or try to console me it'll make it worse. It's best to just leave me alone and make my world quiet until I resolve... usually within an hour. Though it'll take me a full day to be fully functional again.

being neuro-sensitive... which, try to explain to someone what its like to be aware of what seems like every nerve ending on your skin at all times!

having bi-polar... but not like sad/happy bipolar but like "oh I get it" or "hello are you there?" As in... I am either with you and I can follow what is happening be it conversation or action, or I am not with you and you are like, "Hello! Snap out of it!"

and some Tourettes, not so much swearing or a complete inability to control my body... but more along the lines of saying things that are completely inappropriate for the situation. Like when my husband pats me on the back (literally) and I shout... "Would you just stop touching me!" Not really a reasonable response, but its mine. Or when I am telling a story and someone gets that overly shocked look on their face that says, "OMG... Did she just say that?!"

These are the screaming obvious issues that I deal with everyday. So, for today that is my answer.

I went to the midwife today. I forgot to tell her to use a butterfly needle when doing my blood draw. I now have a bruise the size of a Susan B. Anthony dollar and my elbow still hurts. What amazes me is that usually when I have any bruising the person doing the draw was unsteady or made some other mistake. The only thing that went wrong this time, was the gauge of the needle. Note to self: remember to request a butterfly. I guess I had better take some Arnica.

Monday, July 28, 2008

OCD...

I am not OCD... though some days my life would be so much easier if I was. Today for example... I told my husband I would do some dishes today (usually I do them at night but due a big kitchen project I had two loads instead of one). So, I woke up and we ate, then I attempted to do yoga but we having computer issues and the video wasn't playing. So, I sat down to read... I am really into Tennessee Williams right now. The kids were not listening and being loud so I told them they had to lay on my bed for quiet time... this induced a naptime that came 2 hours early. I was sleepy too, so I slept. I woke up a bit before them and came downstairs to do the dishes... it's now 1:30pm. I started a fun string of texts with my husband, cleaned the kitchen, put a frozen veggie pizza in the oven, checked my mail, received a phone call... I was feeling so productive. I even washed the kitchen window.... something I have been meaning to do all week. Then I realized.... OMG... I put a frozen pizza in the oven. I rushed over to get it... sure enough, black. I am so terrible at planning things and if life is not happening as normal (like having to do a load of dishes during the day) then I always seem to drop the ball on something.

It's the same story for leaving the house... grocery shopping is the worst. I can make a list... it doesn't mean everything I need is on the list. I admire those that are so fastidious to have every little detail planned out... I can't seem to grasp what all the details are! So, as much as I try to get organized and be diligent about it... the details still slip through my fingers. One thing is for sure... I need to see it coming, meaning don't surprise me, you'll ruin my week. And... it has to be my way, because that is what makes sense, not necessarily what is "the right way" or the best way or even the most efficient way... it just makes sense.

My husband found it funny that we were eating lunch at 2:30pm. When I explained to him that kids and house work is more than I can organize in a day, he texted back... we still love you. But, here we were at home, 2:30pm , black pizza and a clean kitchen. So, it all worked out... oh did I mention the gum in the carpet? yeah, I am getting ready to clean that up now.

Tuesday, July 22, 2008

Long time, No post.

I am such a private person. There have been many things that I have considered posting in the last while, though after thinking about posting, most seemed uneventful. I have really enjoyed surfing amongst different blogs and sites. It's nice to see so many people, who are not as private as me, narrating life.

Anyway... we moved. It's been three weeks. There are still boxes. Not many are mysteries anymore and I did run into a few that I couldn't even deal with. The desk. Oh, the desk. There was no box labeled "file folders", so I kept opening boxes looking for file folders so I could unpack the first box I opened. Eventually, my husband saw I couldn't do it and did it himself.

I love our new place. It's warm and we can go outside everyday. I also love that my husband has agreed not to set up the tv. It's so quiet now. Well, with two kids I guess that's relative. But having no Elmo video's, or nightly movies has really helped me to remain calm in general. I also noticed that not having pictures and art on the walls has helped too. We haven't hung any of our art or pictures yet, and I have asked if we can just have bare walls for a bit. It's awesome to not have my mind directed by images all over the house. I wake up to the sound of birds singing and fall asleep to a tumultuous sky filling with thunderheads and lighting. I could stare at a thunderstorm all day and never get bored. Last night I had to look away for a minute and when I came back, all my clouds were gone and unrecognizable. That was sad. Then the sky filled with lightening, that was awesome.

I am trying to find a psychiatrist who works with adults on the autism spectrum. But, so far nothing obvious in my area. There is a great university in the next town south of us with what seems like a pretty extensive autism program. If I don't find someone by the time I have the baby, I am considering driving down there, once I can get around a little better. It's a nice drive anyhow, plus I love the university.

Tomorrow, some friends are coming over to help me move goodwill boxes to the Goodwill. I am so excited to have the space opening up. It should be our last trip. I am not quite prepared, so even though it should be the last one, most likely I will have more in the coming days.

Monday, July 7, 2008

Oh, the Pink Taco

Okay, I find this kind of amusing because 1. I am not as stupid as it seems and 2. Could it have taken any longer?

Story: Where I live, a stadium was built like 8-9 yrs ago. There was all this talk around town about what the name of the stadium would be. The first business to offer sponsorship was named the Pink Taco. Weelll, no one was too keen on The Pink Taco Stadium. I couldn't really figure out why. I thought it was kind of silly that someone would pair "pink" and "taco" together. Seemed to me like it would make more sense if it were "red" or "green" because at least those are the colors of the sauce that you would put on a taco... see where I am going? HA! I even got so creative to think that even The Yellow Taco would make more sense because then maybe you could make a special sauce for your tacos that was made from yellow peppers. So anyway... fast forward to 4th of July 2oo8. My husband and I were driving back from my Mom's house and had to drive past what was eventually named The University of Phoenix Stadium (yeah, not as catchy as The Pink Taco Stadium). My husband says, "You know, we should just call it the pink taco anyway...." And it hit me! OMG.... no wonder politicians didn't want to name it the Pink Taco. I don't know how I figured it out, but this is a great example of people not meaning what they say. I can' t believe it took me nine years to figure out they weren't talking about a Mexican food dish!

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.

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.

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/

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.