I was browsing through a friend's profile on Autism Speaks. I really enjoyed the quotes she made up. I found them very inspiring. You can check her out right here. (but you have to ceate an account in order to see.)
Here is some info on Adrienne (copied from her profile for those who don't have an Autism Speaks Ning account) :
Heylo, My name is Adrienne, and I'm diagnosed Classic Autism, doctors say moderate functioning, I still say moderate-high functioning fits me the best. I think half the time im moderate-low functioning and the other half im much more higher functioning. I'm 50% verbal, I do rely on PECS(picture exchange communication system) and Sign Language to help me communicate, but I can speak, sometimes surprisingly well, even times I can hold a conversation with ya, other times its mostly babbling, echolalia, one worders or just little noises. I also have tourettes, which thankfully is more mild then my autism, my biggest and most challenging tic is shrugging my shoulders, my most noticable tic is my facial jerks. I also have been having siezures, but they aren't properly diagnosed yet. Along with that, I have arthritis, cold utercaria(allergy to the cold, i get hives everywhere, can pass out and die), reynods syndrome(another skin related condition), asthma, and other things i probably can't remember at the moment.
I do have a boyfriend, Jim, we've been dating for awhile, on February 19, 2009 makes 3 years. Hes neurotypical besides having OCD about his car, theres nothing out of the ordinary about him except hes dating an autie lol. Hes had many many many people tell him hes stupid for dating me, because how disabled I am, but hes stuck with me through thick and thin. A lot of people don't even believe I can have a boyfriend or believe he is dating an classic autistic chica. We love to prove people wrong hehehe :P!
My autism doesn't define who I am, theres times I'm like screw autism, I'm doing what I want haha, those are rare times lol. Its defintely a huge part of me. I believe I am autistic, and have autism, autism stops me from doing so much, but being autistic is what makes me stronger as a person :). I can drive, which a lot of people don't think its possible, it defintely is possible, I'm a really good driver. I also ride jet skis, and boat. I can even do amazing tricks on the jet skis.
I volunteer everywhere... childrens specialized hospital, harbor house, interfaith hospitality, cattus island, big sisters/big brothers, and even use to do pet therapy with my greyhound and took her to nursing homes. As I mentioned, I'm apart of big sisters/big brothers, my little is 13yrs old and has pddnos(in case anybody was wondering why it also says know other person with autism). I help run the autism carnival every year with childrens specialized hospital. I also am going to college through the DRC(disability resource center) and training to be a sign language interpreter. My goal is to teach nonverbal autistics, deaf/hearing impaired children, or just children with language differculties sign language to ease up their frustration.
I wanted to add the best bit of advice I can give anybody is..... Follow your dreams, don't let anything stop you. Don't ever give up, no matter how bumpy or hard the road is ahead. Doctors are not psychics, so they can not tell you how your child will grow up, so believe in your child rather then the diagnosis given to that child. Despite what label society gives to you, you have the ability to do anything if you put your mind to it and don't let anybody tell you different!
With permission I'm reposting her quotes:
For those who learn to accept are those who achieve much more in life and are those who teach us the greatest lesson in all of humanity!
The best gift in life is that, thats handed to you, not thats bought!
Pain is not suffering, pain is a lesson to be learnt, and to grow from.
You either dodge the bullet, or let it pierce you, life is all about choice.
You never know how being a friend can save somebodys life in the end
You can do anything if you let you open your heart and show the world how amazing you are.
Even in the ugliest situation, you can find beauty within.
The littlest things that seem so small to you, can be so big in somebody elses eyes, even if its just a friendly gesture like how are you feeling, although small short sentence, can have a huge impact on a persons life, its always better to give then recieve.
Don't be the wave in that big ocean that follows everybody else because eventually you will be knocked up on shore and gone before you know it, instead be that fish that swims over those huge waves, and lives life to the fulliest
"You can not push that small, tiny, caterpillar to metamorphosis to that beautiful, magnificent, butterfly. Only it, will know when its ready to give up its younger life. To take its journey into this big world will be hard to overcome; however, when its ready to take that giant leap, it'll let its dreams soar and fly"
It only takes one person to ruin somebodys day but it also takes another person to brighten up that persons day again:-P.. Make somebody happy, show them a smile, say hello or even compliment them, you never know how u can change this world till you actually try
Every ending always means theirs a new beginning right around the corner all you got to do is open your eyes.. "Wherever there is a finish you will most definitely find a start
Showing posts with label Autism Speaks. Show all posts
Showing posts with label Autism Speaks. Show all posts
Thursday, October 9, 2008
Friday, August 1, 2008
Autism Everyday and My Response to the Editors
This is the exact leter I sent to Autism Speaks upon viewing their 13min internet version of Autism Everyday. They claim to speak for autism and the autism community... Well I am Autistic and I am Speaking. Now are they gonna let me speak? If they don't put my letter up as part of the feedback, hmmmm....yeah... I feel a bit slighted...
I like it when the parents talk about not giving up and working with their children. I believe that kind of persistence and determination will go a lot further than anything else. As an autistic individual (diagnosed PDD NOS at age 6) I believe there is a lot of self will it takes as well as support from the parents. It helps to have a high self esteem and a positive outlook for both the child and parent. But I'm glad my parents took a different approach. Rather than working against my autism, they worked with it and helped get me connected with other individuals with autism that have a positive viewpoint. That positive viewpoint helped get me through Jr. High and high school and make the honor roll. It's important for the autistic children as well as the parents to know they are not alone. Autistic people may not always show their emotions, but you can be sure they feel the same emotions any other human does.
As far as the rest of the video. I see comments about why is my child melting down? I too had meltdowns like some of those. If you really want to know ask me. I may not be able to say exactly why your kid is melting down, but I may be able to help explain what triggered meltdowns with me. There may be some things in common. I'm willing to help share my piece of the puzzle. Some of the meltdowns were anxiety based. For instance if I couldn't find x item, and I felt like I'd be late, that would stress me out. It also helped to have some item to carry with me. (Usually as an adult I take my sketchbook with my drawings and some paintings. As a kid, it was often a bug I caught outside that would be a comfort item.) Shopping trips: My mom liked to shop at various places and run several errands in one day. Some of the stops were good, but others were boring. If I was being taken to a place I didn't like, I dug my heels in... Going to a place I like…chances are I behaved much better… I also sort of had a “what’s in it for me” attitude. If I was going on a long trip I wanted to come home with a “one thing”. If I had that incentive I behaved much better. I also don't like just spontaneously disrupting whatever I was doing and going places. I like to know ahead of time where I am going and for how long. Imagine you’re in the middle of a game (a "boss" level), full concentration and no chance to pause it. Suddenly you’re expected to just drop everything and go… Leaving something I am highly concentrated on, unfinished to me feels like leaving the house with the lights on, doors wide open, and the faucets running. It doesn’t feel natural. I like to be warned ahead of time and know when to find a good stopping point with whatever I am doing.
Other meltdowns were tactile. I didn't like my arm being held onto. If my parents tried to hold my wrist, I'd try to break free. Eventually we worked out some kind of agreement. "I won't hold your wrist if you don't wander." I think it helped. I still got distracted at times, but I knew not to bolt out into the street without looking for cars. I had an autistic-like step grandpa who taught me that behavior and insisted upon it every time before crossing a street.
Coping with meltdowns: I'm learning to spot my triggers and cut them off at the pass. If I feel my anxiety level rising and I'm in an argument, it's time for me to back off and come back later when calmer. In the mean time engage myself with a more favorable activity. If you're a parent and your kid is having a meltdown out of frustration, it's time for a break. See if you can direct the child to something they enjoy to cool down. Approach the task later. Don’t try to push on. It won't work.
Hopefully some of this helps. I want to see more of the positive ends of autism and more shown on the gifts along with the meltdowns. I'd like to see a more balanced view of all autism. Not just the poster children. It shows some autism, but just like some people criticize the autism advocates, this video doesn't reflect the full view of autism for everyone. Not every parent with a nonverbal 2-3 year old will have a nonverbal older child or adult. I didn’t start to speak until about age 4, but once I got to talking, they couldn’t shut me up. Now I’m highly verbal. Most people just from looking at me wouldn’t guess I am autistic. That goes to show there’s a lot more to PDD NOS and autism than what is shown. There needs to be more shown on both ends so autism is not viewed as something to be feared...
Sincerely,
MJI
I like it when the parents talk about not giving up and working with their children. I believe that kind of persistence and determination will go a lot further than anything else. As an autistic individual (diagnosed PDD NOS at age 6) I believe there is a lot of self will it takes as well as support from the parents. It helps to have a high self esteem and a positive outlook for both the child and parent. But I'm glad my parents took a different approach. Rather than working against my autism, they worked with it and helped get me connected with other individuals with autism that have a positive viewpoint. That positive viewpoint helped get me through Jr. High and high school and make the honor roll. It's important for the autistic children as well as the parents to know they are not alone. Autistic people may not always show their emotions, but you can be sure they feel the same emotions any other human does.
As far as the rest of the video. I see comments about why is my child melting down? I too had meltdowns like some of those. If you really want to know ask me. I may not be able to say exactly why your kid is melting down, but I may be able to help explain what triggered meltdowns with me. There may be some things in common. I'm willing to help share my piece of the puzzle. Some of the meltdowns were anxiety based. For instance if I couldn't find x item, and I felt like I'd be late, that would stress me out. It also helped to have some item to carry with me. (Usually as an adult I take my sketchbook with my drawings and some paintings. As a kid, it was often a bug I caught outside that would be a comfort item.) Shopping trips: My mom liked to shop at various places and run several errands in one day. Some of the stops were good, but others were boring. If I was being taken to a place I didn't like, I dug my heels in... Going to a place I like…chances are I behaved much better… I also sort of had a “what’s in it for me” attitude. If I was going on a long trip I wanted to come home with a “one thing”. If I had that incentive I behaved much better. I also don't like just spontaneously disrupting whatever I was doing and going places. I like to know ahead of time where I am going and for how long. Imagine you’re in the middle of a game (a "boss" level), full concentration and no chance to pause it. Suddenly you’re expected to just drop everything and go… Leaving something I am highly concentrated on, unfinished to me feels like leaving the house with the lights on, doors wide open, and the faucets running. It doesn’t feel natural. I like to be warned ahead of time and know when to find a good stopping point with whatever I am doing.
Other meltdowns were tactile. I didn't like my arm being held onto. If my parents tried to hold my wrist, I'd try to break free. Eventually we worked out some kind of agreement. "I won't hold your wrist if you don't wander." I think it helped. I still got distracted at times, but I knew not to bolt out into the street without looking for cars. I had an autistic-like step grandpa who taught me that behavior and insisted upon it every time before crossing a street.
Coping with meltdowns: I'm learning to spot my triggers and cut them off at the pass. If I feel my anxiety level rising and I'm in an argument, it's time for me to back off and come back later when calmer. In the mean time engage myself with a more favorable activity. If you're a parent and your kid is having a meltdown out of frustration, it's time for a break. See if you can direct the child to something they enjoy to cool down. Approach the task later. Don’t try to push on. It won't work.
Hopefully some of this helps. I want to see more of the positive ends of autism and more shown on the gifts along with the meltdowns. I'd like to see a more balanced view of all autism. Not just the poster children. It shows some autism, but just like some people criticize the autism advocates, this video doesn't reflect the full view of autism for everyone. Not every parent with a nonverbal 2-3 year old will have a nonverbal older child or adult. I didn’t start to speak until about age 4, but once I got to talking, they couldn’t shut me up. Now I’m highly verbal. Most people just from looking at me wouldn’t guess I am autistic. That goes to show there’s a lot more to PDD NOS and autism than what is shown. There needs to be more shown on both ends so autism is not viewed as something to be feared...
Sincerely,
MJI
Sunday, April 20, 2008
Thinking of taking a break from AS
I don't know when or how long. I am coming to a point I think I need to take a break from the Autism Speaks online web discussion forum. It has nothing to do with any members on there or the battleground that the forum becomes. ( I do have to admit I find it a bit of a let down that people can't put aside differences and work towards a common goal). That common goal should be improving the mainstream's attitudes towards autism. Only then will things start falling into place. Unfortunately not many people seem to be truly aware of this. They find it better to defend their opinion against someone else's opinion than to see the boarder perspective.
Arguing with opinion is like trying to drive a car without wheels; you aren't going anywhere, even if you have a full tank of gas.
Wait. I'm autistic. I shouldn't be seeing the forest, but perhaps I've been wrong all along. It seems massive tree blindness isn't just an autistic thing.
I need to step back and do more things I enjoy for myself. It is fun helping people, but I can't do it on my own. I may check my messages for a few days before going off.
In the mean time I created a thread in hopes maybe both sides can find some common ground.
Hopefully it will go to plan and not turn into another war zone which doesn't help anyone. Now it's time to make a mad dash before the arrows start flying and bombs rain down...
Arguing with opinion is like trying to drive a car without wheels; you aren't going anywhere, even if you have a full tank of gas.
Wait. I'm autistic. I shouldn't be seeing the forest, but perhaps I've been wrong all along. It seems massive tree blindness isn't just an autistic thing.
I need to step back and do more things I enjoy for myself. It is fun helping people, but I can't do it on my own. I may check my messages for a few days before going off.
In the mean time I created a thread in hopes maybe both sides can find some common ground.
Hopefully it will go to plan and not turn into another war zone which doesn't help anyone. Now it's time to make a mad dash before the arrows start flying and bombs rain down...
Monday, April 14, 2008
Discussions about Cure vs. Not Cure Autism
Someone on Autism Speaks asked a question to someone about what things would they like cured about autism and what things would they like to be kept intact. Although the question wasn't pointed at me I wanted to take a stab at answering. This was my reply:
Strengths of autism I wish to be preserved:
- Value for honesty. Many autistic people either cannot lie, or suffer a guilty conscience if attempting to lie. If I do lie, it is usually unintentional and I am quick to fess up. I HATE dishonesty with a passion. I also feel the need that everyone else needs to be honest as well even if the truth brutally hurts. "The truth shall set you free" is something I've heard along with, "The truth will always be found out." It makes no point to lie.
- Value for details and integrity: I am glad I spotted the fly pupae in the ketch-up dispenser at Mc D's. They were maggots earlier that week. No one bothered to clean the container, except for me. I didn't care how much ketch-up I had to dump out at my shift. My concern was for the health of the customers. I dismantled that thing and washed it thoroughly so no old residue remained. As far as I know I may have been the only person who bothered. Since I worked only once or twice a week, most of the week it got neglected and smelled rancid.
- Willingness to stand up for what is right regardless of whatever everyone else is doing. Since we are not popular to begin with and nor do we strive to be popular, it comes much easier to go against the grain to do what is REALLY right.
- Persistence to do in depth research on a subject. Very few people have the patience to research just about everything they can find on a particular subject to become a master at it. If an autistic person can "switch" obsessions from time to time like I do, then I get to learn a lot of stuff and use it to help me understand people and things.
- Some autistics have strong visual abilities. Temple Grandin is one. She could get down and see things as a cow would. That gave her a unique perspective to spot things other people wouldn't. Most people would be afraid to get down on all 4's as an adult in plain view of other people. This didn't bother her. I too have visual abilities, but I am young and still trying to find my niche so I can use them.
And any I didn't list.
---Things I'd like to see gone or reduced. "Cured" if you must.
- Inability to communicate. I honestly believe if one can help break this barrier, than a lot of the head banging, butting, biting, hair pulling, lashing out, and you name it will subside and be something that only happens rarely.I've found stating I am anxious or overwhelmed before really feeling it seems to help prevent a meltdown from occurring.
- Fecal smearing. See if they can be given something else to use for "art" and work on developing some kind of talent, or give them other things to manipulate with their hands.
- Potty training. I'd like to see autistics who struggle with this become aware of when they need to go before it is too late. If there's any thing wrong with the toilet, how it flushes, the "feel" of the toilet seat, or anything else bothering the autistic person, I'd like them to be able to communicate this and work out a solution.
- sleeping issues. That's a toughie I could never resolve, but at least I can be quiet at night (as an adult). I think a lot of it for younger kids is things like nightmares and sleep paralysis. Both are very normal, but with an inability to communicate, they can't express this being the cause of their nighttime freak-outs.
Strengths of autism I wish to be preserved:
- Value for honesty. Many autistic people either cannot lie, or suffer a guilty conscience if attempting to lie. If I do lie, it is usually unintentional and I am quick to fess up. I HATE dishonesty with a passion. I also feel the need that everyone else needs to be honest as well even if the truth brutally hurts. "The truth shall set you free" is something I've heard along with, "The truth will always be found out." It makes no point to lie.
- Value for details and integrity: I am glad I spotted the fly pupae in the ketch-up dispenser at Mc D's. They were maggots earlier that week. No one bothered to clean the container, except for me. I didn't care how much ketch-up I had to dump out at my shift. My concern was for the health of the customers. I dismantled that thing and washed it thoroughly so no old residue remained. As far as I know I may have been the only person who bothered. Since I worked only once or twice a week, most of the week it got neglected and smelled rancid.
- Willingness to stand up for what is right regardless of whatever everyone else is doing. Since we are not popular to begin with and nor do we strive to be popular, it comes much easier to go against the grain to do what is REALLY right.
- Persistence to do in depth research on a subject. Very few people have the patience to research just about everything they can find on a particular subject to become a master at it. If an autistic person can "switch" obsessions from time to time like I do, then I get to learn a lot of stuff and use it to help me understand people and things.
- Some autistics have strong visual abilities. Temple Grandin is one. She could get down and see things as a cow would. That gave her a unique perspective to spot things other people wouldn't. Most people would be afraid to get down on all 4's as an adult in plain view of other people. This didn't bother her. I too have visual abilities, but I am young and still trying to find my niche so I can use them.
And any I didn't list.
---Things I'd like to see gone or reduced. "Cured" if you must.
- Inability to communicate. I honestly believe if one can help break this barrier, than a lot of the head banging, butting, biting, hair pulling, lashing out, and you name it will subside and be something that only happens rarely.I've found stating I am anxious or overwhelmed before really feeling it seems to help prevent a meltdown from occurring.
- Fecal smearing. See if they can be given something else to use for "art" and work on developing some kind of talent, or give them other things to manipulate with their hands.
- Potty training. I'd like to see autistics who struggle with this become aware of when they need to go before it is too late. If there's any thing wrong with the toilet, how it flushes, the "feel" of the toilet seat, or anything else bothering the autistic person, I'd like them to be able to communicate this and work out a solution.
- sleeping issues. That's a toughie I could never resolve, but at least I can be quiet at night (as an adult). I think a lot of it for younger kids is things like nightmares and sleep paralysis. Both are very normal, but with an inability to communicate, they can't express this being the cause of their nighttime freak-outs.
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