livid with anger

Hi everyone,

Please understand that I am not writing this blog as a Democrat, or a Republican. For what I'm saying here I've been shouted down, cajoled, marginalized, and demeaned by people of both parties.

I'm writing this blog as a married mom with Aspergers syndrom, raising (and trying to protect) two daughters who are also living with Aspergers.

On 4/17th of this year my daughter's pediatrician lamented the fact that according to the Children's Health care Reform act (as passed and made into law in 2009) "Autism is now a 'untreatable' illness, and will no longer be covered by insurance.

I didn't believe him, so I went to Congress.gov and searched under 'Health care reform act'. Sure enough, it was there. Since then I've been calling, faxing, and emailing every rep I could in both the senate and the congress. I even called the president. All of my queries were mainly met with indifference, derision, and a blatant dismissal of my concerns by both Democrats and Republicans alike.

I even tried to contact the ASA (Autism Society of America), which by the way I was a member of. These 'wonderful' people, refused to return my calls. I was transferred from department to department to department, only to reach a 'voice mail' of the Director who was 'supposed' to address my concerns. And no, he didn't even have the decency to answer my call.

The only thing that the ASA would say was how much 'attention' the President was paying to the organization. But what about the people who this 'organization' was supposed to be representing? Where was OUR attention? Where was the answer to our concerns over having the ADA and the Civil rights act violated against ourselves, our children, and every man .. woman.. and child living with Autism and Aspergers?

Since mid April, I've been doing all the leg work begging Congressman Lujan, Senator Bingamin, and Senator Udall to do their jobs. Not ONCE have they had the decency to favor me with a reply.

In May I finally got a 'update' email from the ASA saying that we needed to support S.819, which is supposed to represent those of us with Autism and give us equal tretament. I also got similiar emails from Autism Speaks, and Autism Votes.

Out of curiosity, I went to congress.gov and searched for S. 819. Sure enough it's there.

First of all, there will only be a 'few' Autism centers. And we're supposed to be getting our treatments ONLY from these 'approved' centers, who will decide our treatments 'for' us. Never mind, that the treatments may not be ones that are 'right ' for my children. Never mind, that the treatment that works for one child with Autism may not work for another child with Autism.

As if taking away our freedom of choice in deciding the 'right' treatments for ourselves and our children isn't enough, there's more.

This bill also calls for a 'volunteer' registry. It's 'supposed' to be 'voluntary', but according to some staffers of some of the senators; if you want special education services or treatments for your children ... you MUST register.

In short the current Administration (dems and republicans alike), Autism Speaks, the ASA, and Autism votes have betrayed the very people who they are 'supposed' to represent. And I am saying it here and now. These traitorous organizations DO NOT represent myself, my children, or anyone with Autism. Indeeed, they should be called to task as to why it's more important to 'pal around with politicians' than it is to do their sworn duty and to protect 'our' interest.

Why is it that I and my children will be forced to REGISTER as though we are incapable of making our own decisions and are criminals who must be 'monitored' at all costs; yet Child abusers who prefer to attack children who are the same sex as their abusers are being giving 'preferred' status?

Why is it that I, my children, and millions of people who live with Aspergers and Autism are being DEMOTED to second class citizens?

All the Congress and Senate had to do in order to be in accordance with the Civil Rights Act and the ADA (Americans with Disabilities act) was to strike the erroneous phrase "Autism is a untreatable illness" from the Health care reform acts and the Children's health care reform acts (thereby eliminating the 'excuse' not to treat us equally under the law).

Instead, they have given 'us' the functional equivalent to the Nuremburg laws.

I've been told that I'm 'over reacting' to this attack on my, my children's freedoms for no other reason than the fact that we learn in a different way than people who are considered to be 'normal'. Of course, I've been told this by people who this outrageous law does not 'affect'. I guess they think that since it's not them, than those of us who are 'affected' should keep our mouths shut so no one else will be hurt. Even some people with Autism say that S. 819 is 'better than nothing'.

I say it's worse. I say that in demoting myself, my children, and every one with Autism to 'wards of the state' is facism at it's worst.

I also think that this administration will not stop with people with Autism. I think that with certain government departments (such as the census bureau) who are threatened by anyone who doesn't agree with them; they won't stop with those of us with Autism.

My question when this adminstration comes after 'you' will be this ...

Where were you when all this started? When this could have been stopped 'before' this happened to you ... Why did you stand by and do nothing?