These are the type of people representing Autism

Post Reply New Topic

There are a lot of us around who are "writers" as it is the only way we can truly communicate so telling me I shouldnt write so much is akin to telling me to shut up .....I know thats not what you meant, what you are trying to say is that most people dont have the time to read long posts and they typically get bored unless it is something that interests them.

On most message boards its true but I am on a few Aspie boards and I find the same.....lots of long posts. Like If you sat down and had a conversation with me it would be short and sweet because Id be too nervous to talk and Id loose my train of thought or go off on some other through and forget what I wanted to say....sucks to be me. Writing is the way I express myself and I have often thought of starting a blog and calling it something like "My AS (Asperger's syndrome) and my other AS (Ankylosing Spondylitis)" Something along those lines. I do write fiction as well....I actually have a hard time stopping my writing even when my fingers hurt. Its like my 9 year old son (aspie) but he cant stop talking. I sometimes cant stop talking either but only with people I feel comfortable with like my poor husband who has actually stayed married to me for 10 years (this September)....brave man.

I think you are right about many people pocketing the money for Autism. Like all the sites that sell "sensory toys" that jack up the price because it has the word Autism on it. I got to officeplayground.com and by the same stuff for over half the price. Its been posted on WP where most of Autism Speaks money goes....to their "employees". However there are some people who do donate money to autism research, but most of the people who are really helping is parents. We help each other....or at least we should.

When I see a family struggling I try to post places where they can go to get help help. I have bought a weighted blanket for a child whos mother I met on one of my games because he is having sleep issues and I know what its like to be a single Mom with special needs kids. I ordered some things for my kids from Abilitations once and they screwed up my order and gave me two of everything. I had two wiggle seats, and four weighted animals....instead of the headache of repacking them and sending them back as they had already been paid for I donated them to my daughters school.

Im not posting this so everyone will think what a great person I am.....obviously I did something really bad in a former life to be a sick as I am (kidding). I just think if we all do this, help eachother....and many of us do..... than think how much better things would be. Why do we, as parents of autistic children, need to fight about where autism "came from".....parents with kids with diseases like cancer, ect do not spend this much energy on trying to find out WHERE it came from, they are just taking care of their kids, enjoying them. Making sure they get a decent education, good therapy and they eat some veggies . I went on the Ayn site to help but I was met with a lot of ugliness and people that were more interested in revenge for what damaged their kids than helping this little girl.

Maybe Im just too optimistic and too hopeful but its better than being jaded and angry all the time.
Anyway, If Ive offended anyone by my post....and I know that I have gotten angry (speaking of being angry) but its mainly due to the level of pain Im in right now....and I am truly sorry.

Also maybe I focus on all these things to draw the attention away from my pain. All I know is Id like things to change. Id like people to have a more positive outlook on autism. Our children deserve a better life than I had, they deserve to be accepted by society and not thought of as sick or poisoned. Everyone has issues....some far worse that others but we are all of the same species, believe it or not

Because for some people it is, or at least seems to be. I don't think that advocacy can deny that point. No one who can advocate can know for sure what life is like for someone on the extreme end of autism, who has never learned to keyboard or communicate in any way, and never will, for the simple reason that they are not living that life. We have advocates who are close, who once lived in a shell, and their experiences are powerful. But they still can't speak with certainty for those locked off.

Nor can those of us writing here cannot know what life is like for the parents of those individuals. We need to remember that since ASD is a spectrum, there are also experiences that we cannot relate to or understand, and that those experiences will have influenced families in ways we cannot relate to or understand. We have not walked in their shoes and, thus, don't know what they need or what they can listen to and adsorb. It can be a really large gulf of experience and expectation, and I get very wary of trying to cross it. It feels too much like a man trying to tell a woman how she should think; sure, sometimes that works, but it is off-putting from the get go, you really have to strive to earn and establish legitimacy first.

That is the problem, no one knows for sure. There are good theories, ranging from conditions that mimic ASD to parents just not seeing the early signs, and a good amount of coincidental timing on a regression, but no one KNOWS. In that type of vacuum, parents are pretty much fending for themselves. When they fend for themselves they default to observational information to reach conclusions. I shared an article a while back on the natural limits of observational conclusions, but when there isn't anything else, can you blame a parent for clinging to the only thing they do know? You can't. I think that is something you have to remember when you get into vaccine debates: until a different and well documented explanation is offered for what they know they saw, they are going to stick with what looks like the best fitting theory. And the vaccine one fits what they saw and remembered.

The whole mercury thing is no longer an important part of the argument, as far as I can tell. Now it's mostly young systems overwhelmed. Science is doing enough to disprove the mercury piece for most of those families. But their eyes and experiences still tell them what their eyes and experiences tell them.

Anyone desiring to be an effective advocate must fully understand what they are up against.

I think the videos people like lilome post are wonderful. I think sharing successes here is wonderful. Branch out of here and post your positive experiences on "their" boards. Show that there are other ways to improve the prognosis for ASD kids.

No where did squirrelflight77 suggest that mercury was the issue.

Hi, thanks for your reply and I'm sorry to hear what happened to your daughter.

I think one issue with the whole vaccine debate is that people tend to argue from an ideological standpoint, not scientific. Very sad as this leads absolutely nowhere.

I get what you are saying however the woman who said she would rather have polio than severe autism also does not know what its like to have polio or severe autism. She may look at her child and "think" that he is suffering but she really doesnt know does she? If a child is non verbal and I did have a non verbal child for many years and I now have one who can not express herself a lot of the time and rejects comfort when she is upset or hurt (I understand this because when I am hurt I dont want anyone touching me either.....I scared the heck out of my doctor when I was having her and he decided to try to "stretch me" and I screamed at him not to touch me LOL). She also can not have a conversation or convey to you what and where she hurts or why she is screaming. I know what its like to have people stare at you because you child is making strange noises or strange movements and I know what its like to worry every single time I drop either one of them off at school.
I do understand what its like to have a child with Autism and I also know what its like to be an Aspie and have Aspies. I relate to both of them in different ways. I also know what its like to have a child with mental illness who sets fire to my house and jumps off the roof because he thinks he can fly.
I also have a severe and painful debilitating disease so I think I can understand, maybe, somewhat, having Polio....this is why I dont understand someone making such a crazy statement.
We dont know what our kids are thinking sometimes and sometimes out of the blue they let us know http://carlysvoice.com/

No one ever really walks in someone else's shoes, yet all of us are who we are in large part part because of the extent and effect of our unique experiences, in combination with the unique traits we were given at birth. We only have what we think we know, which may or may not carry relevance to someone else. We really never know what someone else is capable of, how they evaluate things, or where they come from. Shoot, my sister in law grew up with my other sister in law, and yet thinks all the later's positions and feelings are unfounded and irrelevant. *I* can understand them better than she, odd as that seems. Which is why I thread really carefully.

But ... sometimes we come across parents that are just plain crazy. That would be the conclusion I reached about John Best. I tried all my best tools to see if there was a way to talk to that man, but there isn't. Maybe this woman falls into the same category, maybe not; I don't know.

In reference to your sister in laws.....my entire family doesnt get me, I swear they found me in a box beside the road like my older brother used to tell me !


Now that I think about it, my older bro...although terrible to me as a child, did write to me after my diagnosis and after the long email that I sent my entire family detailing my life (obviously most of which they were unaware of). I got an email back from him telling me how sorry he was for how he treated me and how he wished he would have know how much I suffered. I told him not to worry about it, it was a sibling thing, I didnt want him to feel bad. Still it was nice and I saved that email. Still I tend to be the opposite of all of them, they live for football (my older bro is a HS football coach and a history teacher)....I cant stand sports. They are all Republican.....Im NOT! They are all religious and go to church every Sunday...Im not and I dont. They can be somewhat bigoted and I certainly am not. They also tend to be very close minded and Im very very open minded. (ok saying that, no comments about my beliefs thats not what I meant about being open minded....and I have researched all the anti vax and cure stuff so Im not completely closed minded about it. I do believe that some people have reactions to immunizations and I have had them myself as I mentioned before).

Sorry I totally changed the subject because DW's sentence triggered something else in my head....how aspie of me! Guess Im tired of worrying about how crazy other people are and Im focusing more on my health and my own life. Like I said I think trying to save the world was my way of distracting myself from my illness and pain.

People like the vaccine theory because it's simple, just like any toxin theory. Action->Reaction.

It's easy for people to understand and make sense of so they latch on to it. In addition, it's understandable that a parent would have a strong aversion to the notion of inflicting damage on their child, whether it's founded or not.

A very small number of people have reactions to vaccinations that cause illness or injury due to an autoimmune response, but it wouldn't be unreasonable to assume that these people would also have similar or worse reactions to the actual virus itself.

Also, a lot of parents here in Austin, Texas (where there is every autism treatment available, from the state-of-the-art to just plain wacky) feel like they have to try everything before settling on a treatment approach. Unfortunately, parents sometimes run out of money and energy before they get anywhere with their child's treatment. Or, while the parents are exploring a bunch of useless options, their child gets too old to benefit from early intervention.

Here, the schools don't give parents any guidance, and members of the Autism Society and other organizations are bombarded with treatment options--some good and helpful, others dangerous and a waste of money. Some very smart but desperate parents end up getting taken advantage of.

People in the U.S. love the vaccine theory because A) it's controversial and promotes fear (the national language of our country-forget English, we didn't even invent that) B) it's easy because we can blame a scapegoat for the problem, and C) it gives us a sense of self-importance, a cause to rally behind. If it wasn't for the vaccine theory, autism wouldn't be as well known. Sure, the facts behind autism suffer, but when has that ever been a problem? Marketing=money. Money=good stuff. Enter Autism Speaks. So in case anyone wonders why they support the vaccine theory...that's why.

Impressive