This is a blog for one purpose and one purpose only. To bring together people whose lives are touched by autism in any manner who believes that any organization that is a proponent of eugenics is bad. Any organization that allows a senior vice president to go on television and talk about contemplating killing her autistic child is wrong. Any organization that sees autism and therefore autistics as a plague is wrong. It is a place for us to form a coalition to speak out against Autism Speaks. It is a place for us to develop a strategy to get our needs as adult autistics and parents of autistic children to the appropriate government officials in order to improve services and treatments for co-morbid issues common to Autistic Spectrum Disorders. There are words which cause us all to become angry. Using those words or phrases will hinder the purpose of this coalition. In order for this to be an open blog there must be a few rules. Failure to abide by these rules voluntarily will turn this into a moderated blog where I will enforce them unilaterally.
1. Until a parent is deemed unfit by a court they will be treated as an intelligent person that has the best interest of their child at heart.
2. All parental decisions regarding what is right for their child will be respected.
3. We will support each other's differing choices in how to deal with our children and agree to disagree peaceably on the individual methods employed.
4. We will NOT use the word "cure" on this blog because it is the euphemism used by Autism Speaks to describe pre-natal testing and eugenic abortion of autistic fetuses. The terms we will use to describe ALL services performed for or to an Autistic Person is either "treatments" or "interventions". These terms will be used interchangeably and are assumed to mean the same thing whether it is a bio-med intervention or speech therapy.
5. Bio-medical products will be described as supplements, supports, or therapeutic devices.
6. PECS, computers, voice output devices, and other supportive items will be generally termed assistive devices or assistive technology.
7. The term "curebie" will not be applied on this blog EXCEPT when referring to any paid staff member of Autism Speaks and in any other reference will be considered cursing.
8. There will be NO DISCUSSION of our individual positions on treating autism in our own children. If any ND or Bio-med person is asked a direct question about their theories then please direct the questioner to a different blog and discuss to your heart's content your views. This is not the forum for that discussion.
9. Another no-no word on this blog is chelation (see rule 5). Let me gently apologize to my bio-med parents but I must do this. I understand that the chelation deaths of autistic children were from doctors that were not following the proper protocols for treating children. However, to avoid the sensationalism that is often associated with the word chelation because of these incidents I really need for it to not be used. Since chelation is a support to the immune system you can call it immune support or simply lump it in with all the other supplements.
10. THERE WILL BE NO CURSING, NAME CALLING, FLAMING, BASHING, BACKBITING OR HARASSING ANYONE ON THE COALITION!! This includes cyber-stalking! I have very strong religious beliefs but there is another reason I will not tolerate foul language and that is the fact that my young teenage son who is autistic will be involved in this effort and I will not allow him to be exposed to graphic language on anything I support. If this becomes a problem I will resort to moderating this blog which is really not what I want to have to do.
We are all adults. Lets behave in such a way as to demonstrate that we are aware that we are adults.
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19 comments:
Spydyee, I wish you lots of luck.
Hi Spydyee, just a quick note to let you know I am here.
Thank you both. Your support and kindness is appreciated.
There are two primary things we need to accomplish.
1. Figure out what we need from the government. Money would be nice but they are going to want to know for what and to whom they are doling out funds. Now we have seen they are not very picky considering they gave a billion dollars to Poor Allison fund.
2. We need to figure out a way to separate Autism Speaks from their funding sources. No money no research. No eugenics.
This is going to be crass and I cannot find a nice way to say it but I am going to say it and apologize to anyone that I offend.
Too bad Karen McCarron doesn't try to use the old "The Devil Made Me Do It" defense and blame the video by autism speaks. Dad and Grandpa could sue them for wrongful death for Katie and Karen could sue them for .....
God I forgot the name of it but it is something about being in a position of influence and then doing anything that could influence a person to commit a crime.
I need to be watching Law and Order again. Oh yeah Depraved Indifference. That would actually apply to how the McCarrons could sue them too. I know we wouldn't get that lucky. However,I can always wish for it to be her defense.
Spydee,
You've got my attention.
I am neither part of the biomed or neurodiversity camp.
I wish very much that I could talk to you about the separate issue I have with participants in 'neurodiversity' and see what advice you might have for me there.
I would love to know what you think the ghandi-esque sort of solution could possibly be there.
I don't know that one exists for it. If someone knew of one, it might be you though.
I'm no activist, and regardless of my physical/mental neurological whatever makeup I'm certainly not part of that 'autism community' and as far as I can go at this moment is being here on a perspective/thougts of: 'hell with them, this is too important she's [Spydee that's you] got a point.'
Its a point I can't ignore, even as I deal with what I do.
And it so happens my main heroes are many of the same as you've listed, (plus one).
I see what you are doing. I can't in clear conscience actually NOT be here.
You've got my attention, I am listening.
Very first thoughts:
1. Signatures? Congressional support?
Evidently you'd be surprised how few people actually do write their congressmen. I've had to write mine twice, with good results both times, starting with personal replies from the man.
I'm guessing we need people within the government to hear our points of view so they might veto bills towards eugenics abortions, etc, introduce bills of their own to better protect.
We can certainly at least write towards that end I should think. That might be a little naive but its 'all I got' at the moment.
I'm distinctly aware that in my particular circumstance I am only in existance because:
A. any abortion was illegal when I was conceived
B. There was no testing for anything like this at the time
Because of this the eugenics/kill-your-autistic-kids-when-you-get-upset issue really 'hits home' and hits a nerve with me.
2. No immediate ideas there. I'll get back to you if I think of anything.
Droopy and everyone else,
Any issues anyone wants to address with me personally can be sent to tbwfoundation@bellsouth.net I am willing to address any issue on either side of the fence but more than likely will divert questions regarding bio-med to googlybear or advise you discuss it with foresam on his blog or philcommander2 at youtube. On that note philcommander2 has several great videos regarding the genetics and the bio-med sides of autism and he speaks eloquently to both sides. He is a bio-med parent that sees certain "autistic like" traits that are in his son in himself also. This is the only time I will address this issue. If anyone sees someone asking these types of questions in the future when the blog grows then please direct them to this post. Thank You to all my extra sets of eyes this old lady needs them.
Welcome Droopy
Thank you for your input and yes we need to write and we will but what is it we as a united front want presented.
The leeching of essential funds by money spinning organisations is an expression of corporate psychopathy. Any organisation which openly seeks to raise funds for itself through seeking public sympathy based on any parents' publicised intent to murder any child because of their disability is taking corporate psychopathy to even greater pathological levels. The verbal threatened intent to harm or kill is assault under common law. The public should not fall into the intended trap of sympathy but rise up in disgust at any attempts to use such assault as an advertisement/fundraiser.
... Donna Williams
There is a group forming called Autism United, and I don't know much about them yet, just seen them mentioned around on biomed groups. I believe that they are trying to unite the different autism organizations to fight Autism Speaks. I don't think they are specifically biomed or neurodiversity or any such thing. I think their goal is to get funds directed back to autistic people and their families and communities. As things are now, Autism Speaks is going in and grabbing all the sources of donations and running off with them. I believe that Autism United has a website forthcoming. Also, we should all read the Autism Speaks 990 form. Autism Diva links to it on her website. If I am remembering my numbers correctly, Allison is getting paid a 6 figure income. Can you believe that? How much more corrupt can this organization get. Not even Katie, the Wrights own daughter, has been able to stop them. They have chose to cut her out rather than listen to any reason. And the sad thing is, it is her son for whom they originally started this whole thing.
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My only problem is that Karen McCarron is to blame for what she did. Sure Singer is disgusting, especially talking about contemplating killing her child in front of said child. But, when it comes down to the actual act, something has to spur on a parent beyond a suggestion from Singer. That said, it would be nice though to see the father and grandfather sue Singer.
Once AS is combated and the funds directed towards people in need. I think one thing that is needed is to look for warning signs and provide support (even professional) to parents such as Alison and Karen, who are contemplating killing their autistic child. Kind of the same way that postpartum depression is gaining awareness in order to save moms and babies. Autism Speaks is rewarding Alison with a 6 figure income for talking about her desire to murder her kid, and she never shed one tear or got choked up discussing it. It was as though she was talking about contemplaating buying a new pair of shoes. This is a huge warning sign, but does AS use its funds to help her get professional help? No, they pay her well to be in a position of power. That is scary!!!
I deeply appreciate the input from both googlybear and Donna.
Welcome Donna Williams we are glad to have your voice here and appreciate your time given to this cause.
The statement is disgusting to me regardless of her circumstances because I have lost a child and would give anything to bring him back. It is even more disgusting to me because of the full context in which she said it. Her child's death was, in her opinion, preferable to giving her child a bad education. OK, let me see...
My kid is alive, functionally illiterate, on welfare or my kid is dead. HMMMMM.... I still choose the alive thing even if life is crappy for me and my kid I choose life. So maybe I am weird. I guess my perceptions are muddled by the fact that my husband and I are both autistic as are our three children. We are full time college students and live on Pell Grants, SSI disability for the two babies, food stamps, and housing assistance. We have Community Based Service Workers that help us care for our children and their needs and we get day care vouchers for our youngest child to have full wrap-around day care outside of her Head Start classes. If I have NEVER in my life considered murdering my children then I have no idea why she would consider it. Therefore I am a bit confused. I agree with Donna that we should rise up in disgust.
"My only problem is that Karen McCarron is to blame for what she did."
I agree fully. I also know that her attorney is responsible for mounting some type of defense and I just wish he would drag AS into the mix because we all know things like this contribute to someone with an unstable mind actually being pushed over the edge to act on that mindset. If he even mentioned it then it would open the doors for others to go after them both in court and in the media. There was one father that killed his autistic son whose friends had seen the video and encouraged him to do it. I think every person that had any influence over that frustrated parent being moved to end a child's life needs to be punishable by law. It has got to stop!
There is a new section here. It is for developing our list of family needs.
INPUT NEED INPUT
----- #5 from Short Circuit
There was one father that killed his autistic son whose friends had seen the video and encouraged him to do it.
Which case was this? How sad! I could probably find it on Joel Smith's memorial. The story that always makes my skin crawl is the one where the parents or caretakers lock the autistic person in an apartment and set it on fire. Or the one where the foster parents lock an autistic child in a closet so they can go out of town.
Her child's death was, in her opinion, preferable to giving her child a bad education.
Autism Speaks pays Allison 168k per year. She can afford to get her kid a decent education.
The child had other serious co-morbid issues besides the autism and was in the UK. There has been very little publicity about this one because of the severity of the disability of the child. I am not sure it will even come to trial. But the father was struggling and several of his friends had seen the video and encouraged him to kill the child. He was some type of physician and has handed over his medical license voluntarily. He gave the child a narcotic and then after the child was asleep he gave the child some other drug to stop life. A friend of mine in the UK told me the story and knows relatives of the child (not immediate family) and I have never been able to find any media coverage on it. Perhaps the "humane" way he did it is why the media didn't deign to cover it. No sensationalism, No story. You know how they are.
"I could probably find it on Joel Smith's memorial."
Nope it is not there.
I'm freshly adult.
I'm here, and will help how I'm able.
(My thanks to Googly for directing me here!)
I'm glad that you've set up rules like this, and will abide by them fully while here.
well, i'm not an adult yet, but i'm getting close. i agree that autism speaks is a screwed up organization, allowing mothers to contplate on murder! i'm kittiesrock46 from youtube, btw.
Hey spydyee! I finally found ya. Had some confusion with the address and signing up and all but all's well. I've been meaning to make a proper blog myself and this may be the perfect forum for me as well.
Anyway....I'm here to support you in your efforts as we share the same views on autism and what is being done and said out there.
David
Joeker Key Of David BigTimeSynesthete
Welcome
Please visit the other posts and give us your input. Just adult and not quite there are very welcome here because you can tel us what you have experienced and what worked well for you and what did not. I request that you not state this in an inflammatory manner. Your families like these families meant well in their efforts and need respect. Please share what services and therapies you received and how effective they were for you. Share those that created stress and those that did not.
googlybear and all
Autism United is a small grassroots organization on long island. I am going to contact them and see if they have their charitable status set up and if we can each chapter off of them and then with enough groups set up form a national office. If we get to be as big as Autism Speaks we will have the same problems they do. The only thing the national organization needs to be responsible for is setting up the overall mission statement of the organization, registering the new chapters, and facilitating communication between the chapters. For that reason I think the "national staff" could consist of service board with a representative from each chapter and from that board choose by an online ballot the officers. By not having all the "corporate" trappings the majority of the monies raised stay in the local community. My entire church is a worldwide organization with the oldest and largest womens organization in the world and it is run by an entirely lay (unpaid) clergy and funded entirely from member tithing and donations to the poor. Extra services such as broadcasting expenses and such for the church is handled through their investments and holdings. Volunteer labor is underestimated in this country. Every person working with my foundation is a volunteer except 3. Many work from their homes. We do not have an office unless you want to count my study in our house where we congregate for doughnuts and paper folding for mailings once a month. "Bagels" too! The kids all play together if they are not in a school somewhere. We often plan our folding days for school closing days and congrgate here with teh kids. We have 2 safe rooms complete with video cameras and we rotate supervision duties. Volunteers all with different theories all working together to help families living with Autism. We have one theory over here. "SCREW RESEARCH WE NEED HELP NOW!" That was the direct quote from a screaming mother at a meeting of our local autism society. That is when I acted and that mother is one of my paid employees and my best radical activist. I will let you all know what comes of my talk with Autism United.
I May be a little absent over the next 3 weeks. You guys need to keep recruiting and posting for me. I have two major issues on my plate.
1. I am meeting with our police department in order to kick off a sensitivity training for their officers and to rollout our "Take Me Home" program. You guys might want to look into helping your local police implement the program.
http://www.pensacolacitygov.com/ppd/pages.asp?pg_id=5551
2. My mom is putting all 60 acres of her land into a trust for her diagnosed grandchildren. She is remodeling a house on the land into a B&B to fund the trust. We are also building a canning house to allow local organic farmers to participate in a co-op canning project to market their vegetables under their own labels.Use of the facility will be paid for in product so we can produce my grandmother's recipe for vegetable soup. My vegetarian hate any vegetable soup but hers because they are all nasty tasting so I am going to produce for them and enough to sell for money. This summer we are working on the renovations of the B&B. My husband and I are wiring the house for DSL, Cable, and phone. We are also developing the website for the entire project. That is what we do as a profession.
As you can see I have a full plate this month and it was all scheduled before this blog was started. So I need you guys to keep the momentum for me while I am scarce. I will we in and out but keep trying to spread the word.
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