Not a cure, just appropriate support

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Someone suggested that I look at this website below and it rings so true to me. I have not looked though it all yet, but I do agree with its basic premise:

Autistication Revolution
We don’t want a cure, or funding for research into a cure. What we want funded is appropriate education and practical support services that would allow us to use our unique skills productively and to live happy and fulfilling lives.

We also need to get politics out of the way. There are people’s lives at stake here. Why do we need politics to get funding?
http://www.autism999.com/blog/autistication-revolution/

I would like a cure. If there was a cure special support services and education wouldn't be needed.

bjcirceleb, can your child tell you when his tummy hurts, that he's hungry or thirsty, or that someone at school is hurting him?

Last year as I was getting my little boy off the school bus, he had tears in his eyes, and was visibly upset about something. The bus driver and her assistant insisted that he was like that when they got him. As my son and I were making our way up the driveway, I noticed that he had blood coming from his mouth, upon closer inspection, his knees, forehead and the palms of his hands were scratched and bleeding.
No one would speak up as to what happened to my son. His injuries were consistent with being out of his safety seat before the bus came to a stop, and he was pitched forward to the floor.

But my son can't speak, so they took advantage of that.

Legally, isn't that some form of abuse regardless of whether or not your child is nonverbal? The rules depends on the state, and I believe it's worth looking into for advocacy purposes. Because your child was hurt on the bus like that, it's very suspicious.

The woman who runs the Special Services transportation department is a friend of the family, so she was all over this situation when I called her. She called the driver and her assistant into her office, but they both swore that Eric was like that when they picked him up from school. His teacher says that's not true, and I'm more inclined to believe her, because Eric has been in her class for three years, and any time he got so much as a scratch, she sent a note home in his folder letting me know what happened. She and his therapists document EVERYTHING.

I will say this though....I haven't seen either the bus driver or her assistant at all this year, so they may have been asked to move on to another profession that doesn't entail taking advantage of children's disabilities.

bjcirceleb, my first post seems a bit snarky and I apologize for that. Even within the autism community it sometimes seems like we come from different planets.

I realize that this board is primarily Aspie, and having a child with classic autism sort of makes me the odd man out here. But I'm trying to find my place, and I fit in here more comfortably than I ever did with the Down Syndrome community.

I know there are some on the higher functioning end, and even some NTs, who seek to put stumbling blocks in front of the science for a cure, but for a parent like me it feels like those stumbling blocks are in front of my child.

I understand that some don't want to be cured and that is their right, but some of us would give ANYTHING for a cure.

Just because some people with autism can speak, it doesn't mean they should speak for the ones who can't speak at all.

I hope you understand where I'm coming from, and once again I do apologize if I seemed a bit snarky with my first post.

I don't believe a cure is even possible for most kids on the spectrum - but it may be possible for those whose causation is environmental or allergy-based. I don't think research into a cure is useful at this point, until we know what the different causes of different autisms are. Science is just starting to turn the first page on that book. Once we figure out causations, we can figure out who should have a cure (because they were never meant to be autistic) and who needs to be supported (because autism is an integral part of who they are).

The controversy and conflict within the autism community will likely never disappear until we figure out those causations. But my greatest fear is that in all this causation research, and genetic mapping, the Cure will end up being a prenatal test.

That means the cure will be not having autistic people born into the world. And to me, that's more poison than cure.

Be careful what you wish for.

I don't want there to be a cure. I like everything about me, and especially my special interests, which add power to my personality.

That describes my situation and feelings too. I often feel as if were on a moon of the wrong planet, looking through a telescope at the Aspie world below, a place thats hard to relate to.


Same; everything I have and more.

That's a good analogy...a moon of the Wrong Planet. But the Wrong Planet is the closest we can hope to get to our son's world.

At three, my son had about 20 words, several animal sounds, and even had a few hand signs. He seemed to be developing properly for any child with Down Syndrome. Within about a year, all of that disappeared. I've had my suspicions since he was about a year old, but his therapists would say, "Hes got Down Syndrome, so he's just delayed." One day I was walking through my living room and he was sitting in the floor spinning a cookie tin and flapping his hands. My blood ran cold when I saw that. I had seen it before, somewhere else, on t.v. or a movie maybe? All I knew was that it wasn't good. So I hit google and everything came back with Autism...

Teeth grinding-autism
hand flapping-autism
body tensing
gagging on food
spinning objects
lining up objects....all autism.

I wanted to scream. There are days when I still want to scream. I can't even see the Down Syndrome anymore, it's ALL autism!! You can meet my son and clearly see that he has Down Syndrome, but within a few minutes in his presence you will forget all about that.

I came to Wrong Planet because my son can't speak. I can't ask him why he pats his ear when he drinks his bottle, or what the attraction is to wrapping a piece of twine around his fingers, or why he refuses to walk in the hallways at school or climb steps or play in the grass.
But Aspies can talk, and that's the closest I can come to seeing inside my son's mind, to understanding some of the issues he deals with on a daily basis, and hopefully coming up with some ways to make his life better, easier to live., happier.

Are you saying that you think he has autism in addition to Down syndrome? I don't know if that's an accurate way of looking at things. There's a lot of overlap between the symptoms of Down and the symptoms of autism. It might be more accurate to say that Down is one form of autism.

Of course, we know exactly what causes it in the case of Down syndrome - an extra copy of chromosome 21. And we also know for certain that's not curable.

However, I do know someone who has had a lot of luck in improving her Down syndrome son's developmental speed with some dietary changes. If you would like to see improvement in your son's symptoms, You might want to contact her and see if what worked for her will work for you too:

http://cavemanforum.com/introductions/s ... /#msg38911

I at least understand. You want for your son, you want that connection other parents get. I could never be angry or blame someone for wanting that. Some of us aren't opposed to looking for a cure (so much as being very worried by the society doing the seeking). But I do feel that we can't place all emphasis and funds on just looking for a cure in place of providing better support.. because we may not find one, even if we do find one there's no guarantee it will work for everyone or that it will be found in any of our lifetimes. At the same time putting everything into support, then how will we ever know more about Autism? There's more to it than just our anecdotal stories and experiences, somewhere hidden in those genes and brains there may be an explanation for it all. Something that ties together all of those things that confuse us. What if we could find something that reduced a majority of the negative symptoms while leaving in the good but we never found it because no one looked?

I do admit that there are aspects of finding a cure that worry me, the same concerns I have in some other areas involving things that are potentially dangerous, such as genetics. Individually we're decent enough, but as a race when it has come to messing around with dangerous things, we're neither a very nice species nor terribly smart. We tend to put short term gain ahead of everything else and never seriously consider any long term consequences. Heh, and I realize that even admitting that maybe there's a reason to look into a cure will probably earn me more enemies than friends.

I never know quite what to think or feel when this subject comes up. It's such a difficult situation to consider, if I could be something other than what I am... but the potential ramification of this option opening up could mean an end to anyone like me ever being born again... would I choose the unknown and, knowing the problems I face to day, possibly change the very core of my being? Well, I guess that's one for the philosophers for sure.

Oh come on. I hate this my-child-has-it-worse mentality.

In school up until I was 15 I would twirl pencils in front of my eyes and tear paper to shreads and takes thing apart at my desk for hours. I had little awareness of social things. I am still mostly verbally mute. People treated me badly and I didn't even realize it. I would not be able to say this at all without a keyboard, never have in my life. I am high-functioning and don't even think I have it that badly. I have bad eating problems and confuse hunger with nauseousness.

Autism does get better, you know. I don't have the concentration to read the whole thread at the moment so I could be misconstruing this. If your child is young you have lots of room for treatments and improvements that weren't available for me and most people here. You are fortunate. But even if we didn't have these things nobody really wants a cure because we don't even know what that means. It's an ingrained part of us. If you took that away we don't know what we'd be. It's how we perceive and interact with everything. Autism generally has more communication and awareness problems than Asperger's does, I will not deny that. But I don't think in the end it turns out much differently for us all.

Science has not managed to find a cure for the common cold...much less something complicated like autism. Politics have made medical science into profit seeking buisness instead of actually trying to cure people. I wouldn't mind if a cure was available, but I would not take it cuz autism defines too much of what I know to be myself. However for non verbal autistics, and classic autistics like your son, I think a cure should be sought after as long as prenatal testing was not their idea of a cure and children were not harmed in the research.
I know alot of people here are anti cure to the point some can be rabid about the subject, but there should be an option. My dad wanted to take me to benny hinn ( a present day oral roberts) to get healed. I told him that I like who I am...it is part of me like my hair and my eyes and fingers. I dont want to be healed of my hair, eyes and fingers. He looked at me like I clobbered him with a 2by4....really the look on his face was priceless. However I know you dont see it that way and you want your child to be able to talk and relate with you on many things. However I do recomend you teaching him sign language as that has helped many with classic autism.
I am sorry that happened to your son...I know what it feels like to be beat up on bus

If you knew for sure that your son liked himself better as he is, and didn't want to be "cured", would you still force a cure on him?

Autism in general, and Asperger's specifically, are not diseases, and so don't need cures. I'm in the "curing is evil" camp. Or, more specifically, I don't have an objection to a voluntary treatment that will turn auties into neurotypicals if they want it - as long as there's also a voluntary treatment available to turn neurotypicals into auties if they want it.

N

I know my sons inability to communicate to us and understand our attempts to communicate to him is a frustration on both sides. I know removing that barrier would be beneficial to him. Its not just verbal, its also not understanding other forms of communication like pointing and gestures and expressions.
I don't see anything about his autism that will be a positive. Its a disorder