A Message from Billy/Lurker/Kyngdingxx

Since Gonzo was hit by lurker, I thought I would post the nice little rant from lurker/Billy/King Dick or whatever he calls himself I received last year:

selfishness

Billy to you - Aug 2 2008 More Details

From: Billy

To: storkdok@aol.com

Cc:

Bcc:

Date: Sat, Aug 2, 2008 10:45 pm

It makes me cringe seeing those like you taking cheap shots against biomed when nobody in the medical establishment has the incentive to look for and devise treatments, when you are the same ones who don't want a cure to happen anyway. And also while you are the same ones who are the non disabled ones on the spectrum, and who have children, who if on the spectrum, are non disabled. I feel sickened at a bunch of successful poindexters trying to get others to accept such low cognitive enrichment by rejecting dramatic interventions. You seem to like to cover stories of successful autistics, as if all on the spectrum will attain that success, and as if unsuccessful ones don't exist.

It's silly that in one of your posts you mentioned the guy didn't have any biomedical interventions as if that isn't necessary to do well. That's too anecdotal and even if there are some who progress greatly as they grow up on the spectrum without intervention, there are others on the spectrum who never gain a decent amount of mental abilities without intervention. I think it's becoming obvious that the etiologies are varied on the spectrum. And someone functioning that well sure sounds "recovered", or as having the results that a cure should bring.

I find it extremely trivializing and offensive when someone says the term "differently-abled" as if disability isn't real, and when they act like disability isn't bad and shouldn't be cured. I wish there were more truly mentally disabled people out there in the media to contradict you, right as you express the absurdities of those who want to stay a lot smarter than most other people, by retaining the condition of there being a population of mentally underprivileged people, through discouraging the enhancement of mental ability. I wonder how secure you people feel that you don't have to openly debate your oppressive intentions with me, who is immensely and loathsomely mentally disabled. I bet the debating is different when the disabled people who are the subject of the issue, have an opportunity to fight back through contact, in contrast to debating parents of the disabled on the spectrum, the other group who mostly can't be proselytized, where the children's opinion doesn't enter the debate. I get really pissed off knowing about all these aspies enjoying their lives while others on the spectrum have to live horribly, and I must endure indignities and only get to see others having fun. I'm so sick of all these smart people.



Billy, you seriously need some professional help, and DAN! doctors are not going to be able to help you. Neither is "Cheese of Autism" AoA or any other cure mentality group out there. Instead of hating yourself, why don't you do yourself a favor and see a mental health professional who could help you learn to accept yourself for who you are and get on with life. It is a waste to hate so much, to be so consumed by anger and hatred for something you cannot change or control.

Evidence of Harm: DAN! practioners and parents of autistic children

A recent post by Orac on Mercury in vaccines as a cause of autism and ASD: A failed hypothesis brought out the best in the anti-vaxxer crowd (sarcasm). Although it is repost, it is appropriate because of the recent findings in the Autism Omnibus Test Cases. The Special Masters in the first three cases which were dismissed wrote that the petitioners' physicians and experts had "gross medical misjudgement". That is about as close they could come to saying what we in the medical community already knew, that they committed malpractice and are basically incompetent. They were especially harsh on Dr. J. Jeffrey Bradstreet. Kathleen Seidel provides the transcripts of this in her post Autism Treatment in the Evidence Gap.

I was appalled reading the "autism treatment" at what the young boy, described as "C" from the Snyder vs. HHS decision, had to endure. Over a period of more than eight years, Dr. J. Jeffrey Bradstreet subjected this boy to numerous invasive tests, including several Lumbar Punctures, blood draws, urine tests, and numerous non-standard tests that were not approved by the FDA and/or were preformed outside of the USA. He had numerous dubious "autism treatments" that were not supported by the medical evidence as valid treatments (the diagnoses were not valid and neither was the medical reasoning behind them), including many dietary supplements (some with severe side effects), IV secretin, IV Imunoglobulin therapy (a long and painful process), IV chelation (with severe side effects), HBOT (noted but not detailed), predinisolone (steroid), antibiotics, antifungals, and antivirals, and referral for colonoscopy with biopsy.

This young boy was tortured. As a physician I consider this abuse. And this was in my mind as I read Orac's post and the responses. Several persistent and virulent anti-vaxxers would not concede that the evidence does not support vaccines as the cause of autism. Then someone, HCN I believe, dug up what one parent, Kevin Champagne, put his son through, here:

Diane wrote; "How long have you been living it? And what are your work hours"?

Well Diane I'm not sure why you made this personal but I will tell you how long.

Diane, I have been living it for 5 years. My son is 7 and was diagnosed at 2.

What are my work hours? You must assume that because I'm the father that I'm not at home or not "living it" because I'm at work all day?

Diane, my work hours are usually 14-16 hours per day but only 4 days a week.

Trust me Diane, I've lived it. I flew with my son to North Carolina for bi-weekly IV chelation treatments for one year while he screamed and disrupted the entire plane. One time we were on a 5 hour ground hold at Newark airport and I thought I was going to lose my mind. I helped hold him down over the last 5 years through countless blood draws while he screamed at the top of his lungs. I went through 30 straight days of HBOT treatments with him while he screamed and scratched my face until I was bleeding.

I took an entire summer off through the Family Medical Leave Act when my son was first diagnosed so I could be home to rub transdermal chelation on him 2 times per day and watch and listen to him scream through ABA therapy.

I have been to at least 12 different autism conferences and my son has been a patient of the following doctors over the last 5 years; Hardy (6 months), Krigsman (for an autism gut study), Buttar (2 years), the Geiers(6 months), and Charles Ray Jones (6 months - present). All of which included long plane rides and or car rides with more hitting, scratching, and screaming.

Diane, I have definitely lived it and I'm still living it and no matter how many hours Governor Palin spends on the campaign trail I believe she is also living it and she has a tough road ahead and hopefully while she is our VP.

And while I'm airing it out here, in my opinion, mercury DOES NOT cause autism ...low pH blood levels do. Research it. Some unvaccinated kids are being diagnosed with autism. Children on special diets most likely improve because their pH levels go up.

Take ten minutes and watch this YouTube video about low pH and how it affects the body;
http://www.youtube.com/watch?v=uJJA9sWT6Qg

Posted by: Kevin Champagne | October 25, 2008 at 01:24 AM

Mr. Champagne didn't "listen" to his own son. He persisted in torturing, abusing his own son. And I know there are many, many others out there who subject their children to the same abuse.

Much of the finger should be pointed at the quacks, like Dr. Bradstreet, for pushing this pseudoscience, but the parents have some responsibility here. Wake up! How much more evidence will it take to convince you that vaccines (and other crazy theories like pH changes) are not responsible for autism? Why are you still subjecting your children to meaningless and painful treatments?

Peers are key for autistic kids, researcher says

Peers are key for autistic kids, researcher says is an excellent article about the research by Connie Kasari, at UCLA.

"The best way to help autistic students fit in at school is by training the child's typical peers, says Connie Kasari, a professor of psychological studies in education at UCLA."

"Her work focuses on developing social-emotional skills in atypical children, and her most recent research studied social interventions in public school settings. She followed 60 elementary students with high-functioning autism for six weeks, and found that providing social skills training and one-on-one aides to autistic children isn't enough. The research suggests that helping autistic children is a greater issue than can be solved by parents and schools working together, but requires larger public policy reform."

Q. Tell me about the research you do.

A. I've done a lot of experiments with students trying to understand their feelings about their friends, and feelings of loneliness in schools. I'm going to talk about our randomized trial, short term, 60 kids with autism, to try to figure out which treatment is most affective in keeping the kids connected to the social networks in the class. We really think of those high-functioning kids as being underserved in the public schools because they often get very little support.

Q. You had the most success working with typical peers. What does that mean?

A. We would identify three typical kids in the classroom. Parents would give consent and then we would talk to those kids about how to be a good friend. We didn't even identify for them the children with autism as the kid we were targeting. Those typical peers make a difference.

When we worked with a child with autism alone, it was no better than just inclusion. Those kids didn't really change in the course of six weeks of intervention.

The implications of this are, we think that having one-on-one aides in classrooms stigmatizes and marks autistic students. So maybe our best intervention is to intervene with the classroom as a whole, the teachers, the aides, the students. While our kids need some social skills intervention, if the environment isn't ready to receive them, it goes nowhere.

Q. This isn't something a parent can ask for in an IEP meeting, though. What is the motivation for schools to take this on?

A. In the end, it's more cost effective. We recommend they have an autism consultant they employ to handle these things. There are some good examples that in school districts, having that person changes things from the inside, as opposed to having outside agencies providing all the one-on-one aides, which doesn't seem to be a very effective practice.

I wish this had been written before our IEP three weeks ago. She talks about some of the very points I and our developmental pediatrician made at the IEP. There was some resistance in attempting to have peers help my son, but we have some concessions now written into the IEP that I believe will help him a lot. His peers are very important and will become increasingly important in the years to come, with middle school and high school. At least I will have this soon to be published study to use in the future. I have already forwarded copies of this article to the team.

Catching up, NPR Interview, and Schedule Changes

I am in such a funk. I am exhausted from the DHHS fight, which finally was found in my son's favor, but they are still sending me tons of paperwork, bills, and I have not received my son's records from them, as they promised. Our IEP went well, thanks to our developmental pediatrician coming to it and advocating for a more generalization of social/emotional skills and cognitive behavioral work based on Michelle Garcia Winner. My son is having a lot more positive experiences at recess, instead of wandering around by himself.

My interview on NPR, along with Dr. Baron-Cohen, regarding our experience with the British version of The Transporters was aired last week, I didn't get to hear it until Friday. Here is the link.

We have had lots of schedule changes, which are always challenging. Martial arts moved to Tuesday and Thursdays now for an hour, which has been challenging to get through. The problem with the Monday/Wednesday half hour classes was the time change to starting before the bus arrived home from school. My son LOVES riding the bus. He was VERY UPSET when he thought I would have to pick him up from school, making him miss his bus ride twice a week. This is actually what provided the incentive for him to stop disrupting the class by talking about what time it was or whatever else crossed his mind. "Yes, Sensei, No Sensei, Can we do it again, Sensei?" is all I told him he can say, and he can answer questions. So far, so good.

The other schedule change is adding ice skating lessons after the boys went to a birthday party on ice. They loved it, even though they were down more than up. I have spent the last 9 days frantically finding skates that fit, clothes for skating, signing up and filling in forms, prepping the boys, etc. Yesterday, after the second lesson, my son continued to skate on his own for another 40 minutes! Just to practice! Wow! He is amazing, I am so proud! He has a lot of difficulty with balance and coordination. My 4 year old, of course, has taken off after 3 lessons, and is all over the ice. He has no fear, and is extremely coordinated. Picture a small child hurtling over the ice screaming with joy at the top of his lungs! Everyone laughs, his joy is infectious!

I'm hoping things are going to settle down. I've been up to my ears in paperwork, hopefully will get it more or less filed so I can see the table top again.

I was just interviewed for National Public Radio about "The Transporters"

Holy Moly, I hope I sound lucid! The science correspondent, Jon Hamilton, called me and we talked about The Transporters, which my son has used to learn about emotions. Dr. Baron-Cohen was interviewed in their BBC office a couple of days ago. The episode will air tentatively next Wednesday, depending on the inaugural things going on.

Katie Beckett Medicaid Medical Review Team says my son's "diagnosis of autism is questionable"

My son has had the Katie Beckett Medicaid waiver since he was 2 years old. He has a diagnosis of classic autism, now called "Autistic disorder". He was diagnosed at Children's Hospital of Boston and has been followed by our developmental pediatrician, who is the head of the division for Developmental Disabilities at Maine Medical Center for 6 years, who also has his diagnosis as Autistic Disorder on every evaluation.

Every year we have a nurse from DHHS who sees him to qualify him for another year as autistic and meeting the criteria for disability for Katie Beckett. This year, she had seen him for 5 years in a row, so the rules say we could do a phone update, and she requalified him for another year in September.

I got a letter from the "Medical Review Team (MRT)" on Thursday, two days ago, on December 5. It said A is not eligible for disability based on "Medical information does not indicate that this child has an impairment that would preclude the child from participating in age appropriate activity." There were 3 options, the first two were to ask for "reconsideration" either with or without new information. To ask for a reconsideration I had to contact our MaineCare worker or fill out and return the enclosed form by December 7. They do not work on the weekends, December 7 is Sunday. That gave me ONE DAY to return the forms and/or speak with our caseworker. They also give me a deadline for turning in the new disability forms and new information by December 27. The other option is a "fair hearing" that would need to be requested by December 27.

On Friday I went to our Independence Association where our case manager and several of her colleagues went through the papers and we discussed what had happened to their other clients and what the best options were. This is the first time that they have seen a child with a clear diagnosis of autism denied by the MRT. This is also not the first time I have been told by professionals in the field that DHHS denies a lot of people because most won't fight the denial. They either don't have the time, energy or resources to fight. I decided to request the reconsideration with new information and started calling DHHS. Of course, it took a couple of hours to get this done. First, the caseworker was on vacation, then the supervisor could not be found. I then requested the "worker of the day" the person who is supposed to be on call, and they said there was no such person. Of course, we knew that was a lie, because I have asked for that person before and gotten someone to talk to, just not the day I had to speak to someone. So I finally found a customer rep who actually gave a rat's patootie about helping someone. She let me explain the situation, then gave me her fax number and after 3 tries the fax went through and she put it on the desk of our caseworker with a note. As DHHS is not known for their reliability in actually reading their mail, our caseworker thought we should call the MRT directly, and someone had their highly secret phone number. They do not want to be found, they do not want to be bothered with phone calls, as I found out. Like I care.

I called the MRT number and was warned that the woman I would talk to sounded like a man, because someone once made the mistake of addressing her as a "Mr." and she made life hard for them. She answered the phone and I explained the situation and that I just wanted to make sure someone was notified that I wanted to have a reconsideration. She said she would email our Medicaid worker to confirm that I had called within the allotted time. I then asked her specifically why was my son denied disability. She said, "Let me read to you from the record. His diagnosis of autism is QUESTIONABLE." Then she said, "Well, he actually was denied in 2006 for the same reasons, but there was a computer glitch and the Portland office eligibility worker forgot to take him off." I was stunned, I was never told he even had a medical review by that team, I had never even heard of them before a couple of months ago. I asked how that could be, he has always had the diagnosis of autism. She said, "It looks like the team said he had "high functioning autism". He's gotten two extra years of Medicaid he shouldn't have had."
There was no sense in arguing with her, she wasn't the one who made any decisions, so I said thank you for the information and for documenting I had called.

I called our developmental pediatrician's office. Her nurse took the message. She said this has never happened before, that their diagnosis of autism has always been considered correct. I haven't heard back from them yet.

My son has learned a lot and is doing well, but he is still autistic and needs a full time aide at school and I support him the rest of the time. He isn't able yet to participate in very many same age activities at all without support. I have no doubt he will progress someday to not needing the full time support, but right now, he's only seven. He can't even have a conversation with another peer, he doesn't know how to do it yet. He needs constant redirection. And this is considered "participating in age appropriate activity"? He has absolutely no consciousness about safety. His pragmatics are very delayed. They only look at his being mainstreamed and he speaks.

I worry about what this could mean for the future, as this is paying for his OT and ST in school. Will the school cut this down because they won't be getting Medicaid payment for these? And we would lose case management, which is one of the only things that has helped me at home, to learn how to schedule and teach and do homework. Our case manager also has information about programs that might help A and funding options for recreation and other activities, it is invaluable. It isn't that I want him to be "disabled", it is that he needs and deserves all the help and accomadations and learning options he can get, to level the playing field for him and help him achieve his potential.

What kind of brain dead people are making these decisions? This is supposedly a team of nurses and/or physicians? How much are they being paid to get people off the rolls?

Well, they picked the wrong kid to pick on as a test case. Now they have pissed me off. I have the best disability lawyer in Maine and probably the whole northeast. He has made legal history with his case law win for a young lady with Asperger's. My son's specialists all concur with his diagnosis and will support us.

They just had to do this before Christmas. What a bunch of Grinches!

The letter feels like winter!

Yesterday when my husband brought in the days old mail, there was a letter from Grandma to my son, thanking him for the puzzle letter he had sent her. He held it, got a funny expression on his face, looked into my eyes and said, "Mom, it feels like winter!" I had to think about it, then I asked him if it was cold, and he said, "Yes! Like winter!"

What a nice way to say something is cold!