Wampum

I have had good experiences at the Marcus Institute. Bobby was diagnosed there, which allowed us to get into an early intervention program. A couple times a month they put on seminars co-sponsored by the Emory University Autism Resource Center. Those seminars are useful. I plan to go to one next week.

Bernie Marcus's partner in Home Depot, Arthur Blank, took his money and bought the Atlanta Falcons. I like spending that Home Depot money on the Marcus Institute a lot better.

I also was not quite comfortable with all the hype. Nice research! It makes sense.

It's good to hear of positive experiences with the Marcus Institute, and we should pass that on to Bloggg. My main issues are with the Wright's attitude that now that they are "on the scene", the rest of us should simply get behind them, apparently because they have the NBC microphone. Sort of like the DLC ;-).

Sorry if I came off rather harsh, but the Autism Speaks websites pushes enough of my buttons that I see no reason to give up our autonomy for their umbrella.

I haven't heard of Autism Speaks until this post (I gotta watch more TV). The web page pushes some of my buttons too but I like the fact that they are talking about autism. More talk = more funding and more funding = faster understanding.

Hi Gang -

I have no doubt that the people at the Marcus Institute do good things. I would hope that the people who work at All places like the Institute (including the Institute) would be there because of and for the clients. Not because it's owned by Mr. Homely Despot. That still doesn't mean it wasn't created as a place for Korporate tax $$$.

Also I think that many of the people like Ms. Grandin, Volkmer, and many MANY of the others may have gotten suckered into this, not realizing what it is. Whether or not it's legit they are getting good press. It just sucks that it's really at the expense of our kids.

LOL Mary Beth, you were not coming off harsh! You are a lot nicer about it than I am. That site is a huge load and I had not picked up on that point about a national registry....time to get pissed off about that, too. I am going to link you and talk about it there - talk about spreading manure... ;D

The thing is, what can we do about these people??

BTW I am tryin' to ping ya but it's not letting me!!! lol

Moi, we turned off pinging because we've been completely swamped with trackback spam.

We'll be moving to WordPress at some point in the next few months, and that should stop the nasty spam and allow us to open up pings again.

National registries during a time of creeping fascism freak me out, especially when they're registering what the German Nazis called "unfit." That era resulted in a holocaust not only for Jews and Slavs, but also for the "handicapped." And it's not only the Nazis -- as late as the early 20th century, some American states had programs of compulsory sterilization for the handicapped. As the mother of a handicapped child, I tend to side with Jefferson Airplane in singing, "Let's not tell them about him."

Why is everyone being so grumpy. If Autism Speaks makes these people feel better then let them do it, any help is better then none at all. If the people in the autism community would get together and stop fighting amongst itself maybe we would be making more headway with all of this. Fact is I have 2 autistic children and sometimes just getting the diagnosis is hard enough. I'll take any and all help that I can get.

I have 1 child with autism and 1 child ADD. I also have two "normal" children. So, this post mostly goes to firefly.

Our family struggles too. Don't forget, when your children were first diagnosed. Remember, we were told to "watch out" for miracle cures...

Too many of our families are in the same boat because we all say "I'll take all the help that I can get" because all of us need help so desperately. The problem is; that we become targets to anyone stating that they are "here to help us". We allow ourselves to become targets because we are so desperate.

Our families can't afford to blindly follow anything we want to hear. Just because someone says the things we want to hear it in a way that makes us "feel" our needs are being servered. If we "feel" served that doesn't mean that is what needs to be done.

Would you give a beer to an alcholic? I am sure the alcholic would "feel" his/her needs were being served.

Just a little more.

If NBC was so concerned with doing this campaign on autism; why didn't they talk a little about how to handle encounters with children/people with autism. I think they did more to make people afraid than aware.

Also, why didn't they cover the fact that there is no tax credit for having a disabled child?

Autism research receives only $15 million per year from private sources, compared with more than $500 million for childhood cancers, muscular dystrophy, juvenile diabetes and cystic fibrosis—which, combined, are less common than autism.

Give the parents a tax break for crying out loud!

Oh my gosh!! I just found your web site and your article on NBC Autism said it all. Well, almost all. Why is no one going deeper into the seed or cause of this so called gene/gentic epidemic as they now call it. I never heard of a gene epidemic...it's impossible. Why didn't they say that the mercury, formaldehyde and aluminum put in the vaccines for babies caused mutation of the genes. This being a known fact. Why didn't they mention genetic susceptibility or individual immune sensitivity to all the virus and toxins being injected into little babies. Why? Because they never did their homework. No deep research. Greed caused this and now they are trying to cover up the biggest medical injustice in history. The government, drug companies, researchers and scientists know this. So I would like to know why Mr. Wright and his Home Depot buddy didn't plan this program for the real core of autism. Was it to push people with money into our faces about how they can give their autism child the best. My opinion, the program sucked. And to suggest that all autism groups join them as one, I don't think so. To be controlled by them would be as bad as the government mandating all babies be given injected toxins. Let them blow their millions on whatever, the answer to the cause " of autism or mercury poisoning " is behind closed doors. Just open the right door and the puzzle will be solved..all pieces in place. And all guilty can step forth to pay for this devastating crime.

Hey Esteleen - thanks for seconding my thought from the other day about a tax credit/deduction. I posted about that - I'm doing the taxes now.... if I could deduct all the education expenses for tutoring and Sylvan that I put out, I could put two whole IRA deductions in, plus one for my son, PLUS more, with the refund I'd get.

Marilyn - they did talk briefly about the vaccines. BRIEFLY is the key word here. They had two people that discussed it, one against and one for, and then the REPORTER said "I'm a scientist, I know, and I don't think vaccines cause this".... The reason they didn't get deeper into it, IMO, is because they don't want to open the can of worms about the government helping the drug companies' and the CDC (among others) in hiding it.....

See me :::::smacking my head against the wall a la Charlie Brown::::::

Hey Firefly -

We're not grumpy - we are pissed the frig off! Aren't you ANGRY that the government doesn't care enough about your kid that they are paying off the deficit with the education budget? Aren't you ANGRY that you have to FIGHT for services? Or don't you even realize that you're probably not getting all the services your child needs?

What is even more horrible about this is that people - parents, grandparents, etc. - are so snowed into thinking children will be "helped" by this that they are blind to the political implications. Do people really think that Johns Hopkins is going to see any of the money??? HAHAHAHAHAhahahahahaha....

Wonderful post, I have a son who is 7 with Autism. I didn't find out until he was almost 4 because of poor services being offered to me. I still am not given the services needed. My son gets sent home once a week for " Being uncooperative" I haven't seen not one paper showing me anything that he has accomplished during the week. I will probably never get the help I am looking for. Everytime I am at the grocery store there is a bucket asking me to donate my dollar to another cause. I am sorry if this is wrong but, I have never seen one for Autism or a charity that helps parents with children w/ disabilities be able to buy a house or attend a proper school. The rich get the answers the rich get the publicity what about everyday people who actually have to work a 40 hour a week job or sometimes two just to survive then deal with everything that goes along with having a child with disabilities.

I am sorry I only have a 10th grade education. Please excuse me if I use inadequate grammer. I have held a very good job (for not have a diploma) making 30 k a year. Which btw I was not able for Medicaid or any other service because I made too much and never had time to take my baby boy to appointments in fear that I would get fired. I struggled. I don't know if there is anyone out there like me but, I sure would like to meet some more parent's of autistic children so that I can learn more and help other also.

sorry again for the long rant! I was just so enragged last night. Notice they were all Attorneys and Physicians hmm, and they have money problems.

Vjade, email me. Maybe I can help you with the IEP...

Moi

Moi, Yes, they did mention vaccines briefly..that was so they could say it was mentioned. The reporter stating he is a scientist and saying "I don't think vaccines cause this.."...DON'T THINK ?? Come on...the guy was either covering up what he knows (and being a scientist he knows mercury and other toxins injected directly into the body are the worse form of toxin poisoning.. attacking the genes and cells) or he was told to say it. Either way..don't think (key words)...means..I'm not sure. Yes, I am fully aware of alot of info on bush, his father and others in the government and friends and their connections with the drug companies..like on board of directors, investments and large campaign dollars for favors in return. One big rich happy family. Marilyn

Firefly: What's this...If Autism Speaks makes people feel better...who the hell said anything about feeling better? I don't need to feel better, I want answers and the truth. I have a grandson (now 3 years old) born very healthly and for this government to mandate and make laws that babies from birth must have all vaccines in a timely manner without even knowing the effects these vaccines, causing my grandson to regress and be diagnosed with mild to severe autism has devastated our family..emotionally, physically and financially. Make my family feel better? While we look into his dark eyes and "hear the silence"? We know all the interventions, we know all that can be done..he has the best doctors (at a very high cost) Dr. Bradstreet's International Autism Center in Melbourne, FL. and this I say is not bragging. The cost for tests, consultations, medicine and supplements in a 7 month period was over $16,000.00 paid out of equity of home. And to be told by government agencies that $39,000.00 for a family of 4 is to much money and thats before any taxes are taken out. No agency figures taxes, cost of living, health insurance..nothing..flat gross figure. Therefore there is no help. It's dog eat dog. Don't you think for one minute Autism Speaks is going to financially help anyone..oh they might..but we will never hear about it. Marilyn

VJADE: I fully understand your situation and problems dealing with a child having this disability. Read my other comments on this site and you will understand others feel they are in the same boat with no oars. Thats what this government wants. So far the government has slammed us, thinking we have no say or control in this matter. The lies and cover ups are more than people want to hear. My daughter has tried many agencies for help and has been turned down by all of them. She even took a thick stack of papers,receipts and letters to the Social Security for SSI. The woman who took the case sent a letter on Social Security letterhead paper and even called within a week and said my grandson was approved as being disabled. And she would try and get a check to my daughter within two weeks. No check came and no return phone call. Two weeks latter my daughter gets a letter from Medicaid stating that since my grandson was denied SSI he would not be qualified for medicaid. She called the office of medicaid to make sure there was no error on their part and was told SSI notified them that the father made to much money. The woman who did the SSI case did not answer any phone calls so my daughter called and said a different name and the woman came to phone. Now this is guts...she said yes, he was approved as being disabled but my son in law made something like $2,000 over limit. So you see, the government also has employees whose brains may have been injured from the flu vaccine that has mercury in it. Talk about being enragged. My blood boiled and still is. And to top this off, my son in law took a part time job at night just to be able to pay bills and worked full time days and this over the limit money was the part time job. So he was busting his rear end to stay afloat and got shafted in the end. I said this as nice as I could but I have another version of it..if you know what I mean. Feel free to ask me anything about what methods we are using to detox my grandson of mercury and alot of supplements every day. What tests we have had done (alot and most repeated within months) and interventions that have worked. We now have him on cod liver oil also and have seen an improvement already. But so far the doctors have not said how they plan or if they can get the measle virus or titers out of his intestines. His little body kept the toxins and the measle vaccine, proven with repeated tests. So let the drug co's and government tell us it was not the vaccines that caused this. And I will call them all liars. You know, to catch a crook you must think like a crook...I'm 67 years young and very wise and one thing I never liked was being lied to especially when a wrong has been committed...Marilyn

Sheesh, I didn't know I stumbled onto a conspiracy theory site! Maybe I shouldn't make a judgment after reading only a week's worth of posts, but ranting and raving about entitlement and pointing fingers and ridiculing people with money who are likely sincere in their efforts seems to me .... I dont know ... wrong.

I didn't hear about the programs til today - wish I had viewed them. I'm still in the "any news is good news" about autism. It's only been six month's since my son was diagnosed and no, I didn't know anyone else who was autistic, and no, I hadn't heard all these stories before and YES, it would have been WONDERFUL to have seen a program dedicated to autism six months ago.

It is terrible to feel like you cannot do anything to help your child because you cannot afford it - but please do not blame those that can afford it. Your comments can be echoed right back at you from them, saying "I'm sorry that I have an education, worked hard, earned a lot of money and can now (and am willing) pay $100,000 for my child's treatment". I would do that if I could, and I'm sure all of you would as well.

In the same vein, I don't know anything about the founders of Child Speaks, but you cannot be serious when you ridicule the guy! His grandchild is autistic - can't you imagine that he feels just as badly about it as you do about your child/grandchild? Maybe the guy has an ego, and may be a bit misdirected, but how can his intentions NOT be in the right place? So what if he suggests putting everything under his umbrella, it won't happen! He's likely just acting out like each of us did when we found out that there is virtually NO coordination between doctors and the different programs, virtually NO "center" to learn all you need to know, and no ONE PLACE you could turn to for answers. I was incredulous 6 months ago at all the misinformation and LACK of information out there. I wasted months before I heard about ABA - and it wasnt for lack of looking.

Anyway, I'm not coming down on anyone here - I know we're all frustrated. But complaining about government conspiracies and that the MAN is keeping us down doesn't help. Instead of blaming the government and expecting the government to solve this we need to be proactive: make changes, get involved in your child's schooling, take on another job if you have to in order to pay the expenses until change comes. Autism is a tough, scary thing to go through as a parent - especially when all evidence points to the fact that our children should NOT have this affliction. But through people like you talking out about it and yes, people like Bob Wright increasing awareness, the changes will eventually come. Maybe not for our children, but maybe for those that follow.

Mark - You are new to this. So you are naive. ;) That's ok. We'll forgive you -

Yes, we are serious about the Autism Speaks people. VERY serious. We're serious about our children. Would you like your child's name on Big Bro's list? This guy is not "acting out." Trust us on that. We have all seen enough people and Korporate quacks who try to benefit off the weak. One day you will have to join Bro's list if you want to get any services for your kid. Then they will get to do anything they want with that info....

The one thing you must keep in mind above all - politics are important. You need to look past what you think people want for your child (or their grandchildren)....drug companies have been hiding the side effects of drugs for years. They don't hide this kind of thing without government cooperation.

I have not found "misinformation" - the information is not all in one place, but then, neither are we as a country. And philosophies about autism are different, as are the various forms of autism. So all information can NOT be the same. Don't consider it a waste of months. Consider it an education on all our children and not just children with the form of autism that yours has.

I didn't find bad information so much as found a wealth of GOOD information. The first thing I did when I suspected what was wrong with my son was to join one of the autism lists. That is the best place to find out good info. BTW What works for your child will not always work for every one. You have found ABA and I am glad that works for you. ABA would not have done anything for my son.

BTW before you go on telling people to pay for things and take another job, please go read the book "Nickel and Dimed" and then come back and say that again.

One other thing - don't go calling adult autistics "afflicted" - you might not like the reaction they have. Many of them do not see themselves as needing a "cure." Like I said, there are a lot of philosophies in the autistic community. Educate yourself before you go slamming people.

Moi,

Thanks for the condescension and patonizing response. I guess I was optimistic in expecting a little more class.

You ought to spend a little time actually reading what I wrote. I did not slam or insult anyone. I assure you I am neither naive nor uneducated about the variance of autism and its treatments. My point is that I hope with all of your finger pointing and name-calling you also spend a little time taking matters into your own hands. I don't expect to have anything given to me from the government. I'm taking matters into my own hands.

All of us are simply doing the best we can for our children. Attacking a belittling Firefly and others above helps no one.

Don't worry about having this post removed (as you threatened elsewhere to a post that didnt share your opinion) - you've convinced me not to waste any more time here. I wish you luck.

PS - you're damn right autism is an affliction. Maybe Temple Grandin and two or three others have the right to disagree, but there are a million parents who consider it exactly that. Get serious - so do you. Ms Grandin loves the way she is - I give her credit. But I guarantee you if she could flip a switch and wipe out autism for everyone ELSE, she'd do it in a heartbeat. So would you. Otherwise why all the screaming and ranting about how terrible it is? Why blame drug companies for causing it? Why try to cure it, for heavens sake? It certainly isn't a "personality trait". It is something that we all are trying to help our children overcome, or at least improve upon. Look up the word affliction in the dictionary before you get back on your soapbox. I did not say autistic adults (or children) are less "human" or less loved, or less as a person in ANY way. I consider my son an angel, and whether he becomes highly functioning or remains severe, he will have just as much worth as a human being as anyone else.

Again, I wish you luck

Moi, Just saw Marks comments and I take it was meant for you and me. The comment ..don't blame the government... apparently Mark does not understand how this government works. Does he not know that the FDA and CDC are part of the government and these same scientist and researchers have worked or are working for the drug companies. If he calls our thinking or comments conspiracy than what does he call Bush (at 11:00 at night) signing and sneaking a bill into the Homeland Security Act, a provision to protect the drug companies from being sued over putting mercury in vaccines. And he got caught at trying this. Did that not show dirty pool or what? We are very active with groups of parents with children with autism. Does he not realize that money does buy alot better care, private home therapy and affordable medical treatments. And the guts to say..go get another job..who the hell is going to take care of the child with autism (ours being a toddler)who needs medicine and supplements from 7 in the morning till bed time. Yes, he may be right.. that it may not help our children but help future children..of course..all toxins will be out of the vaccines and autism will be a thing of the past. This guy does not realize that NO testing was done on new borns such as a comprehensive immunological test before vaccines were injected into new borns..such as the hepatitis right after birth. We know that mercury and the measles virus are in my grandsons body. Never left his body due to the immune system. And to find out there is a test that some doctors have preached should be done before any vaccines be aloud to be given, only to be ignored. I read where in Japan they have stopped all vaccines for children under two years of age, does that tell you something? He has got me going and my hair is standing stright up... Marilyn

Hey Mark, What I do on my own blog is my own business. No one suffers trolls lightly, and when someone basically says I have a mental problem, that's a troll. Not someone who "doesn't share my own opinion."

As for here - I was not patronizing to you at all, I was actually trying to give you some helpful suggestions and reasons for why things are the way they are. Someone who's only had their child's Dx for 6 months *is* naive compared to someone who has had it for many years. You'll understand in a few years how much you didn't know when you wrote that post.

Also, maybe you should "Read what I wrote" yourself. You'll see that you have confused both my posts and Marilyn's, as she pointed out. PKB. And she is absolutely right about the FDA and CDC, as well as the Homeland Security Act. As a matter of fact, it's old news. To us.

If you think autism is an affliction, then when your child grows up, and figures that out.... just don't be surprised by any reaction you get. Just because some parents feel that way means the autistics themselves feel that way. And THEY are the ones who this is all about.

Can't we all just get along? Aren't we all going for the same goal? Believe me, I am just as pissed about the "system". I've paid more than my share (and your's probably too) of "nickles and dimes" to the government. Don't get me started on that.

Is autism on the rise because of things they (regulatory agencies) do or, better yet, Don't do? I think so. There is no such thing as a "genetic epidemic". It is obvious that something is going on. For my son it is likely NOT vaccines - or at least not the mercury, since he tested okay, plus got the MMR after the change in 1999. Also, autism continues to rise even after the changes that were made. So I think it is "mostly" something else. Does that mean YOUR child was not affected adversly by a vaccine? Absolutely not. Perhaps mercury contributed to many cases of autism, I don't know. I'm just saying it is not my son's reason - nor does it seem to be the reason for the majority out there.

But so what? If not vaccines it is something else. I could fill pages with what I think about the dairy, pesticides, pollution, etc and their adverse affects, and how the "agencies" turn a blind eye. Millions are afflicted (oops, there's that bad word again) and dead because of this.

So we agree on the reality, at least, if not the intent of these agencies. But my only point is that I am not ridiculing a guy for setting up an agency after finding out his grandchild is autistic. The guy has money and is Corporate so that makes him evil, out to hurt everyone, and doesn't give a rats ass about his grandchild? Lovely world you live in, sweetie.

My point is that I am not going to be dependent on that same organization you despise so much. I am, best as I can, taking the matter into my own home, with people I can select and control. The school sytems and federal and state programs where I live fall FAR short of what my son needs. Maybe some day I will grab a bullhorn and go scream at the capital building - but right now I am too busy, deperately trying to help my son.

Lastly (for real this time!) I guess we just differ in opinion. I call a spade a spade. I have afflictions, you have afflictions, we all... well, you get the point. Facing reality is not a bad thing. It can empower. It can strengthen. It can turn a victim into a survivor and conqueror. In this age of turning a blind eye to reality there is a serious disservice being done. It covers everything from children playing sports to minorities to disabled people.

Strength is derived from OVERCOMING AN AFFLICTION, not pretending it doesn't exist. Empowerment comes from learning how to cope and live with an affliction NOT PRETENDING it isn't there. Before you misinterpret (again) what I am saying, I AGREE with you that many autistic adults may not agree they are afflicted. That is because they did what I described above: THEY OVERCAME, COPED WITH OR MADE THEIR AFFLICTION MANAGEABLE. And please, once again, do not confuse affliction with "value" or "worth". I have an eyesight affliction. I overcame it. I'm not affended about it.

Again, I wish you luck

Here, you might want to read this page.

I just noticed something in your post. It's interesting because they were just discussing this today on a listserv I belong to. Let me cut and paste you some quotes:

>>Actually, California was one of the first states to mandate that thimerosal could not be in vaccines - and after that, California reported its first decline in Autism in over a decade. Also, it wasn't that long ago when there were still vaccines in other states that contained thimerosal. When the order came through to take out thimerosal, they did not take the vaccines
off the shelves that still contained it. Those shots were still given until they expired. Lastly, there are STILL some shots with thimerosal in them.>This "nineties" thing is not accurate, although it has been a rumour perpetrated by I-don't-know-what-source for the last several months. There are still plenty of thimerosal-laced vaccines being made and,
more importantly for the people who claim they couldn't be a trigger in autism, in stockpiles nationwide and being actively used to this date.

I myself recently had a Rubella vaccine (in DECEMBER), and had to specifically request the thimerosal-free dose. The default was to send
the formulation with thimerosal in it. Whoever is spreading this story is spreading a falsehood>For another example, on August 27,1999, the FDA approved a modified hepatitis B vaccine for the use in infants, that is Thimerosal-free. So, until summer 1999, there was not even an *option*
for the required Hep B. And of course, that is when it was released, not when every sitting stockpiled vaccine had been used up. If they all
even have by now.No Mercury.org has a lot of info. Sift through, take what you like, leave what you don't.

Very interesting. My doctor told me our vaccines were thimerosal-free, but now I wonder (since we asked a yr after it happened) if he only based his answer on the date instead of actually verifying the record. hmmmmm. Something I will look in to.

Also, thank you for the link. I've actually read that before (or from someone similar-I couldnt find my link). If you change "affliction" in my post to "barrier" then we are saying the exact same thing. Mr Klien stated "it would be tragic" if an autistic child cannot remove the barriers.

The only real difference is that I think the barriers are such a part of autism that you cannot get rid of them without also eliminating autistic traits as well. And I don't think it's that bad of a trade-off. Shoot, I'd be thrilled if my son developed into an intelligent, "able to speak, use the toilet, brush their teeth, learn to interact with others, and become self-sufficient" as Mr Klien says. I'd be thrilled with 50% of that.

Can you get rid of the "barriers" without getting rid of the self-stim behavior? Can you toilet train a 3 yr old if he won't look you in the eye, or remain in the same room with you long enough to communicate?

As for his comments on ABA. That is a real concern. The last thing needed is to turn a child into a "trained seal". And I agree - in the beginning that is EXACTLY what it seems like. For some, maybe it always is. Which I think is wrong. But that is not the point of ABA. It is NOT the point that the child learns to match colors, place shapes, or stack a block. Those skills are secondary. The skill they are learning is FAR beyond shape-matching. The skill is communication. Connecting with another human. Becoming aware, breaking thru the 'theory of mind', understanding that messages and desires can be conveyed from one person to another. This (hopefully) leads them to understand that they too can communicate their own wants and needs.

Also, (I know I'm preaching to the choir - unless you don't agree w/ABA) - the real benefit is that it is FORCING another part of their brain to DEVELOP. It is forcing pathways, neural connections and mapping that NEVER would occur otherwise. If it doesn't happen by the time they are 5, 6, 7 yrs or so it likely NEVER will happen. Get the pathways developed and functioning and there is a possibility that future development will be greater (including speaking, toilet training, etc). Anyone thinking ABA is anything less than that just doesn't understand. Ancillary benefits also break down sensory issues.

Again, with self-stim behavior, the issue isn't that we don't want the 3 yr old flapping his hands because it looks "strange" or seems "abnormal" or is "embarrassing". In fact, I couldn't care less what anyone thinks about my son's behavior. The POINT is that when your brain is developing, self-stim behavior REENFORCES autistic traits, which in and of itself is not bad, but it does so INSTEAD of developing normal traits. Again, the idea is to force the brain to map differently - allowing for future learning abilities. Once the child is past that age of development, I don't think it hurts one bit.

So then, WHY force the brain to map differently? Because if it doesnt then there will be little or no chance of the child EVER climbing out from low functing to high functioning.

OF COURSE every child is different. OF COURSE some things work better on some than others.

k. I'm done. For reals this time! >;)

Very interesting. My doctor told me our vaccines were thimerosal-free, but now I wonder (since we asked a yr after it happened) if he only based his answer on the date instead of actually verifying the record. hmmmmm. Something I will look in to.

Also, thank you for the link. I've actually read that before (or from someone similar-I couldnt find my link). If you change "affliction" in my post to "barrier" then we are saying the exact same thing. Mr Klien stated "it would be tragic" if an autistic child cannot remove the barriers.

The only real difference is that I think the barriers are such a part of autism that you cannot get rid of them without also eliminating autistic traits as well. And I don't think it's that bad of a trade-off. Shoot, I'd be thrilled if my son developed into an intelligent, "able to speak, use the toilet, brush their teeth, learn to interact with others, and become self-sufficient" as Mr Klien says. I'd be thrilled with 50% of that.

Can you get rid of the "barriers" without getting rid of the self-stim behavior? Can you toilet train a 3 yr old if he won't look you in the eye, or remain in the same room with you long enough to communicate?

As for his comments on ABA. That is a real concern. The last thing needed is to turn a child into a "trained seal". And I agree - in the beginning that is EXACTLY what it seems like. For some, maybe it always is. Which I think is wrong. But that is not the point of ABA. It is NOT the point that the child learns to match colors, place shapes, or stack a block. Those skills are secondary. The skill they are learning is FAR beyond shape-matching. The skill is communication. Connecting with another human. Becoming aware, breaking thru the 'theory of mind', understanding that messages and desires can be conveyed from one person to another. This (hopefully) leads them to understand that they too can communicate their own wants and needs.

Also, (I know I'm preaching to the choir - unless you don't agree w/ABA) - the real benefit is that it is FORCING another part of their brain to DEVELOP. It is forcing pathways, neural connections and mapping that NEVER would occur otherwise. If it doesn't happen by the time they are 5, 6, 7 yrs or so it likely NEVER will happen. Get the pathways developed and functioning and there is a possibility that future development will be greater (including speaking, toilet training, etc). Anyone thinking ABA is anything less than that just doesn't understand. Ancillary benefits also break down sensory issues.

Again, with self-stim behavior, the issue isn't that we don't want the 3 yr old flapping his hands because it looks "strange" or seems "abnormal" or is "embarrassing". In fact, I couldn't care less what anyone thinks about my son's behavior. The POINT is that when your brain is developing, self-stim behavior REENFORCES autistic traits, which in and of itself is not bad, but it does so INSTEAD of developing normal traits. Again, the idea is to force the brain to map differently - allowing for future learning abilities. Once the child is past that age of development, I don't think it hurts one bit.

So then, WHY force the brain to map differently? Because if it doesnt then there will be little or no chance of the child EVER climbing out from low functing to high functioning.

OF COURSE every child is different. OF COURSE some things work better on some than others.

k. I'm done. For reals this time! >;)

Hey guys, we are all POAs and are fundamentally on the same side. I suspect that none of the commenters above are really very far apart.

Mark, it was refreshing to hear from someone six months into the process. My wife and I are 7+ years post diagnosis and it is easy to get jaded. It is good to hear from someone at a different place along the curve. Don't be a stranger around here. The points of view of all POAs are welcome at Wampum.

Moi, I see you here all too rarely as well. I read your Blogg but it is good to have you here.

I am not sure what is happening in California. The latest information I saw had new referrals to developmental services up substantially in the last year.

If thimerosal in vaccines was a large cause of increase in incidence of autism, I think we should see a levelling off or a decline in the younger cohorts by now or very soon. Of course, mercury could be a cause of autism for a subset of autistics even if it is not the a major culprit in the incredible increase in incidence.

I am not sure what the timing of the decline would be. Thimerosal was used in multi-dose containers. It was not recalled, they just quit making it. As a result, it is unclear to me when the last thimerosal containig vaccines were actually administered. That makes the expected date of a decline in incidence hard to pin down.

I have long suspected that mercury was a major culprit. Being reality based, if we do not see a levelling off or a decline in the icidence soon, I will have to rethink that position.

Being reality-based can sometimes be a PITA, can't it? LOL As far as CA goes, those kids born around 1999-2000 are getting to be school-age....

It's not just the DPT vaccine, though. If someone gets a Flu Shot, THAT has mercury. So does Tetanus. And they STILL do - my son's ped said it was still in both of them. I don't know that they totally quit making it - I thought it was just that they stopped putting it in DPT shots.

One of the moms on the Autism Speaks programs said she ate a can of tuna every single day while she was pregnant. I'm sure mercury doesn't cause all the cases, but it's definitely one of the culprits - especially to those whose genes are susceptible. Once they find the errant gene, they can test it to see what all makes it react in the way that causes autism, and that will give us some of the answers, anyway.

Marky Mark - Truthfully, your ped would not tell you if the vaccine was made before 1999; Malpractice and all that. At this point, he may not even know. Put yourself in his shoes, how many shots has he given over the last 6 years? Would you remember exact things from one person, 6 years ago, in that situation? Probably not. So he's not about to put himself in a bad position.

The one problem with all this Forcing that ABA does is that it doesn't always take into consideration that our children have very strong wills of their own. It doesn't necessarily make a different part of their brain take over, not always - what it does is override the will. And you will have to make choices as to what parts of ABA you use and don't use.

You can teach a child how to stim so that it's not so noticeable - give them other options. My friend's 12 yo son flaps, and walks on his toes - but in class, he won't do that. He may play with a bracelet (has one of those leather things on his wrist) under the desk instead. But you have to be creative, think outside the box. Does your son go to early intervention at all?

As for the theory of mind, that is a lifetime project. It's not something you can fix with ABA or anything else. It does get better with maturity a lot of the time.

But the toilet - the eye contact - our kids have a LOT of sensory issues. And when an autistic child doesn't give you eye contact, it doesn't mean he's not listening to you. It means he IS listening - he doesn't want to look at you, because the eyes and mouth of people many times distract our kids. If he looks at you, he won't Hear you. So it's not a bad thing.

My son was 5 before he was fully potty trained (and he's an Aspie) - and many kids take way longer than that, or never are. But don't force the eye contact - it's probably a lot more upsetting to him to have to look at you than it is having to sit his bare ass on a cold toilet (which is probably sensorily distasteful to him, too!). My son told me that he wouldn't go because of 1) the cold toilet seat, plus 2) he didn't like the look of poop, 3) he didn't like the sound it made, 4)it hit the water and splashed him once. You see, it's All sensory. LOL

So don't get hung up on the potty training. Just plug away at it, but don't force. I know ABA is a lot of forcing - but there are some things you just Don't force. Don't let him go in his pants without a diaper (believe me, some people do that - taking ABA too far) - that is just degrading - and don't punish him for any of it.

Is this a man thing? This toilet stuff? My ex was hung up on the can. And the more hung up he got, the less our son wanted to do any of it. Heh.

One day Son told me he wanted a Green Power Ranger. I told him if he poopied in the potty, he could have one. Want to know how fast he came running out of the bathroom? (Whatever works!)

BTW if you're into retraining the brain, when he gets a little older, try Fast ForWord. My son went from 2 word phrases to non-stop gabbing in 6 weeks. It doesn't work for everyone, but I've heard a lot of parents of autistics who have had it work.

Hi Mark,

Sorry I haven't participated much in this conversation, but I'm perserverating on the new travel blog a bit these days.

We are huge advocates for ABA in our household. Both of our sons started in 30 hour/week ABA preschools not long after they were diagnosed (Sam at 27 months, Jonah at 21 months). At six, we're now trying a bit more of a Floortime approach with Sam, since he was regressing when he moved to a school-based ABA program, and it we've seen him breakthough to a new level.

I believe ABA has helped Jonah as well, though he is still fairly moderately affected. BTW, both both toilet trained in a very short time at age four.

While I love my sons, I don't love autism. I do believe they were neurologically injured (neither by thimerosal, though I advocate against it's use.) If they were both paralyzed in car accidents, I would still love them with all my heart, but want to remove the paralysis. That is how I view autism. They will not stop being themselves when cured, no more than a paraplegic does when they learn to walk again. So I do strongly advocate for a cure, unlike many of those in the autistics.org crowd.

On the other hand, as long as there is no true cure for all autistic kids, I want there to be much, much greater support, education and accomodation. That's the reason I started Trip to Wonderful, and the reason we're taking the trip and writing the book.

Please continue to visit. As a scientist who strongly supported immunization, it took me over a year to realize that Sam's autism in all likelyhood originated from his reaction to his MMR (it's all in his medical records, sadly.) I now still advocate for immmunization, but SAFE ones, and believe we can only have that if pharmaceutical companies are held accountable for knowingly harming our children.

Mark....You have the right to ask for all records of vaccines given to your son. It must state the date, lot number and expiration date of vaccine on his records. My grandson's doctor said to get these records before the tests were done and this would tell them what vaccines contained mercury and/or other toxins. If I remember correctly, the doctor said it was the law that doctors record this information. When we got the info back from the doctors, it gave all the info we needed. We had moved from Michigan to Florida when he was 4 months old so the first set of vaccines were in Michigan, the rest in Florida. Both doctors had kept good records. But my grandson had the first set of vaccines at 2 months in Jan. 2002, second set in March 2002 and so on. All vaccines had expiration dates of 2004 and 2005. Yes, they had mercury in them. The only vaccines he received without mercury never had it to begin with. And this was in both states. None was recalled so it sat on shelves till used. And we were told that if the bottle with multi vaccines (cheaper for doctors to purchase) was not shaken real good, each child after that got a stronger dose of mercury as mercury settles to bottom of bottle. My other daughter had a baby a year ago in Michigan and she went to the health dept. for info on this issue of mercury and vaccines. They gave her all the dope on it. She was told that all health dept's use only the single vials of vaccines which never contained any mercury, only the large (multi) bottles have/had it. And doctors, clinics and such bought it that way to make more money..but would say it saved storage space. We know the mercury was not excreted from my grandson. Repeated tests have proven it. Plus the MMR vacine (no mercury), his intestines are loaded with the measle virus, very high reading on that. But mercury is the main concern right now. So back to health dept's...run by government..using the small vials, no mercury, kept the government in the clear. They knew this problem long ago, in 1991 I believe, the leading scientist that dealt with the mercury in vaccines at a big pharma wrote a memo to (I believe) Merek Pharma stating that with all the vaccines mandated to babies, the concern of the mercury should be considered being more vaccines were mandated meaning the babies were getting way over the limit of mercury. This was ignored. This scientist had retired but was still an consultant for the pharma co. He has come forth with info and the memo has been found to prove it. So this may be a clue as to why autism in the past 15 years has become what it is. During this time many other vaccines have been added and mandated to be given, so as time went on, more vaccines, more babies, and no trained doctors. Just pop pills in the kids to slow them down. Don't be mad at me and think it's a conspiracy..it's a fact. Yes, we all want our children to be free of what ever is causing this and to run and talk and play with other kids, this is the goal we seek. But on the other hand, we were not given information on the dangers of vaccines, just the dangers of the illness. Take SIDS, rarely occures before 2 months of age, but does shortly after the first vaccines are given, and/or after the next ones are given. I believe up to 6 months are the danger time. This is also being considered connected with vaccines. So we must consider the toxins and the virus knowing that the warning was sent many years ago, but ignored. Just as the warning of the World Trade Center was. So Mark, if this is conspiracy and you say "pointing fingers" then let it be. But two wrongs don't make it right. Marilyn

>>You have the right to ask for all records of vaccines given to your son. It must state the date, lot number and expiration date of vaccine on his records.Wow Marilyn, that is something I did not know the doctors were supposed to do. Is that a federal thing or is that a state law, though? I am wondering if all states require that. I have a copy of Bug's medical records, am going to go dig them out right now and check this. And I have never thought about SIDS that way, but now you are starting to pique my curiosity (oh, no...;).... Could you email me about the measles thing? I want to find out how and where you would get tested for something like this.

Mary Beth - can you tell me a little about Floortime? And what you like about it, what is it doing for Sam? Like what parts of his autism are being helped. I've never heard of it. When we looked for therapies, we did the ones to fix the issues, since Bug was never given his Dx until he was 10...Grrrr...

BTW gang, just because I didn't go whole-hog ABA, know that I am Not Anti-ABA. I am for "whatever works" - and that's going to be different for every autistic person. I think it has to be, because we are all genetically different, and the kids are all affected differently. Never seen two Aspies who behaved exactly alike or their academics were exactly like.

As far as I'm concerned, people should be able to use total ABA, part ABA, or none at all, and whatever is working the schools should provide. The goal is to help the children be able to aspire to live their best life possible, whether the folks at autistics.org think that NT parents' idea of what's "best" is wrong or not. Preferably to be able to live an independent life - If that's considered to be "cured", then that's what it is. If not, being a musician, well, it takes all kinds. ;) But in the end, there's a bit of truth to all philosophies - and we need to respect that.

Whatever the need, my crusade is to force the schools to provide the educational services, period. And Mary Beth, if your son can use a computer, I Really advocate trying Fast ForWord once you are settled in your new home. Bug did it the summer after he was 5 and it was a miracle for him. If you want to know more, just email me.

Moi.... On the record keeping of vaccines..Thru our many calls to various autism centers, clinics and organizations around the country, we found this info. When my daughter called the International Autism Center to set up an appointment for her son, she was told to have all medical records from birth including his record of vaccines stating date vaccine was made, lot numbers and exp. date. And of course, it showed date given to child. It also told which arm or leg which vaccine was injected into. I believe I read on the CDC site that this was a federal law..in fact, I'm sure it is. But you can check this out. About SIDS...I know of a case (many years ago) a normal baby boy, 2 months old, received his first set of what vaccines were given at that time and his father found him dead in crib the next morning. They said death was due to SIDS. When parents wanted more answers being he had just received the vaccine or vaccines, they were told nothing could be found as to cause of death, so it was classified as SIDS. We all thought it was the vaccine and now today it has come to light. Something I have not mentioned, in 1975, I gave birth to my second daughter. At eight weeks old I took her to ped. to receive her first vaccines. Within a few hours she started to look like her eyes were going up out of sight. I held her to watch cause I had never seen a baby do this. It seemed to me within a matter of minutes she was lifeless, so I held her up in front of me in panic. I got the doctor on the phone and while we were talking, my baby let out a "bark" like a seal makes real loud and the doctor heard this cause she was in my arms. He told me to bring her in now. I quickly paged my husband to come to doctors office and be with me not knowing what I would hear. The doctor met me at front door and ran with her to room and ran the tipid water of her body, clothes and all. He acted very nervous and rushing to examine her. All this time she never cried but did "bark" and he said that was a whoop cough. What I did not know,and was not told, was that pertussis, the P in the DPT vaccine was whooping cough virus. My husband arrived, and we were given perscriptions to fill and told to keep her in crib, make a tent over the crib, darken room and run a cold steam of just water. Keep door closed and watch her 24 hours. We took shifts, me 16 hours and him eight so he could sleep and work. Did this for two months with just doctor calling and asking how she was doing. Three months later we had a baby that smiled. But one morning I get the newspaper to read and there is an article about the DPT vaccine stating the dangers of the pertussis vaccine. The article mentioned England had so many babies died from it or became mentality retarded that the vaccine was put on hold till futher investigations. Thats how I found out where she had gotten the whooping cough. I made appointment with baby dr. and took article to him. He read it and claimed England and United States had different vaccines. I didn't fall for this so I started to make phone calls (before computers) only to be told by drug co's that it was the same vaccine. I never told them about my baby getting sick, only about the article. I needed to much information from them. Now 30 years later, this same pertussis has been brought to light. Something about the original vaccine was a whole cell virus and now it will be a split virus, something like that. So I have been long into this thing we call vaccines..it is not something just started. Look up pertussis and see the dangers of it. My baby never received the rest of that vaccine series. I thought..put me in jail..whatever, I stood my ground..no more DPT for her.And yet, 30 years has gone by and the same vaccine has been used all over the world, only now they talk of spliting the virus because of the dangers of it. This is what engragges me. So yes, many factors can cause autism, not only mercury. Mercury is a killer toxin but so is alot of things put into vaccines..including the virus. Do the pharma co's know something we don't? I'm sure they do. Just wish those mice and rats could talk and tell us what goes on behind closed doors in the research lab. Cause that may be the piece that is missing to the puzzle. I will get the info of the tests and labs in the country that test for the measle virus. I don't believe it can be done in just any lab. But I do know my grandson was tested and it said something like..normal 1.09, his was like 3.94, meaning loaded according to doctors. I really don't know if this can be "fixed" or removed from intestines. To many mountains to climb before that step. But I will get back to you today with info about it. It was right after the MMR vaccine we noticed a change or regression but did not sink in right away. On the day he received that vaccine, he also had 2 others..one in each arm and in one leg. Hope I have helped you and others see...educate before you vaccinate,,know what your rights are. Ask the doctor to see the warning slips of paper that come with the vaccine bottle and every paper does list warnings, to see the vial to make sure it's not from a multi bottle..these are your rights. If the doctor is only virbal in answering your questions and not showing the paper...leave....you don't need that doctor. And I do believe it is the federal law that all doctors MUST tell parents of the dangers or warnings before giving the vaccines. Marilyn

Good info on vaccinations - thanks.

Moi: thanks for the suggestions on toilet training. Hopefully my son will become verbal enough to try those - but do I have to use the word "poopie" when I do it? (heh >;)

As for the "forced" behavior with ABA - I think there is a great misconception about what is being "forced". I mean, one could say I "force" my other children to do their homework, practice piano, clean their room, etc. Is that bad? The only tough part was the first couple days. He obviously didn't want to be there. He cried. Threw a fit. wailed. I left the room for a while because I only wanted to come to his rescue. But what is so terrible about sitting in a chair when you don't want to? Is it aversive treatment? Torture? Some think so with autistics. But I tell you before the first session was over he was doing things I never thought possible. (placing objects, stacking, whatever).

Now, in only 2 months, he is still nonverbal (but trying) and still understands VERY little, but great improvement in other basic areas. Not just the "trained seal" viewpoint stuff. Before, he could not go into a room with strangers without severe trauma. I'm talking supermarkets, church, neighbors, the grandparents! He avoided any contact. He wouldn't get near enough to anyone to learn any form of play. A strange room with NO people was just as bad. NOW? - just the other day he was on a break, "shooting hoops" in the driveway while we awaited the next instructor. When he pulled up, the ball was flung aside and he raced to him (the instructor) and leapt into his arms. Doesn't sound like much, but it's a start.

ABA is VERY enjoyable for him. He loves it. He plays, wrestles, learns, laughs, etc. He knows the rules, and frankly enjoys the structure. Negative behavior is only countered with a calm, quiet "nope". If I based my decision on those first couple days I would have canned the whole thing - much to his detriment

ANYWAY - I have a couple questions for anyone here:
1. anyone tried casein-free diets?
2. " " wheat-free?
3. " " any other diets or vitamin regimen?
4. Found any good vitamin/protein drinks for children?

We have an apt with a childrens dietician specialist soon, but we've got to get a handle on his nutrition. ALL the doctors except one have pretty much said don't worry too much right now, he's obviously a big, strong, healthy boy, just keep plugging along. But I can't believe that a diet of chips and crackers, with the occasional apple sauce, slice of toast/pancake and spoon of peanut butter won't start to cause new problems (he also drinks juice). He has NEVER tasted meat, so gets little or no protein. We've begun a new approach of "playing with food leads to familiarity leads to him eventually shoving it in his mouth - but it's supposed to be pretty slow going. Any suggestions are welcome!

MB - Trip to Wonderful? Writing a book?

This comment thread is getting pretty long. I posted an autism open thread at the top of the main page. Please continue the discussion there.

Mark...My grandson is on wheat/gluten free, milk/casein free diets and showed allergy to eggs, bananas and whey. He was tested before starting on this diet. Tests showed a leaky gut (not good news) so this diet is required by his doctors to try and heal the problem. So we went full force on this diet, the whole family cause you can't have cross contamination with foods. It's very hard as all lables must be read in stores and most foods including rice milk have to be bought at health food stores..at least for him it does. Special meats..you name it. I have to bake his cookies and bread with special flours of rice and beans ground. My son-in-law and I have studied this diet so much it's hard to eat the "old way". All his supplements (alot) are controlled by his doctors and the tests showed what he needed caused from the leaky gut. So each child would be different. But we did ask to put him on cod liver oil since the conference on autism had about 10 kids "cured" of autism and mothers said they saw a difference right away after starting the clo. It's known to be a brain food. The "side glances" disappeared right away and he say's mama and mom. So it must do some good as we just started it. Like we say..any thing is worth trying but give it time to work. Marilyn

Moi.....Here is the info on measle testing. It is done by blood test. Test done by: Specialty Labs, Inc...Los Angeles, CA. It was a test on measles titer. Now this is how it reads on the results you get back...less than 0.91 not detected-- 0.91 -1.09 indeterminate....and greater than 1.09 detected ==== 3.94 ... So 3.94 is what doctors go by. My daughter said her ped requested this test even before my grandson went to autism center to start treatment but tests results were sent to everyone involved. Costs..I forgot to ask. So when they talk about the MMR regressing the children..this tells it all, for him anyways, plus the mercury in his body. Let me know if this helps you. Marilyn

I was reading on the thread about curing autism, and I wanted to leave a few comments on the Dawson thing and on behaviour modification as well.

I'm High-Functioning Autistic, born with a mild birth defect. I can say that I'm "in between" with regards to the "cure" and the "no cure" dispositions. I've often thought what Donna Williams has said publically and quite politely, that I cannot relate to "Aspergers" people, and that I don't think that they should necessarily speak for those who are autistic. I've skimmed several forums run by aspies, and occasionally have attempted to post, only to usually have the more comprehensive discussion threads I've started deleted by an aspie moderator. The biggest problem I have with aspies is that they tend to talk about how much they suffer and don't fit in, and in the next sentence talk about the friends they have and social gatherings they attend. I think "Hey, how about telling me what it's like to NOT have ANY friends at all, because you can't make conversaion or inter-relate your own experiences in a manner others can understand, and how you don't look for a diagnosis as a badge of self affirmation!"

I have a couple of aspie correspondents, so I cannot say that I'm condemning them, but most of them have a social fluidity strikes me as something very much along the lines of "normal", in relation to my own experience. It seems appropriate that anyone who has more or less a distictively eccentric personality is not interested in cures, and it would be justified. However, I've tried to communicate to some of these people that I've had luck with taking supplements such as phosphatidylsterene, Inositol, B6, magnesium and Omega 3, and they just don't want to hear it. Since taking the PS, panic attacks and disrupuptive impulses have decreased to near nil in the past five years. I'll likely never have things like full-functioning opposable thumbs and a two-storey home in Beverly hills, but a 10-15% decrease in mental lethergy has been a miracle to me.

I don't suggest curing for eccentricity or harmless stimmie behaviour, but I'm someone who used to not be able to walk up or down stairs without falling down. I couldn't move my body to tell it to swim at age 4 when I nearly drowned. THere are some things that qualify as "error" and not "neurodiveristy", and this is the frustration I have with Aspies.

Many aspies on the forums I've lurked on are more interested in talking about suffering, and I'm more interested in "getting over" it. I'm not a masochist anymmore that the few I've met who had the patience to deal with me.

Give it up on the vaccines, people. The research is really not looking there anymore. They are looking at genes and the environment It is so easy to blame someone or something else rather than to grieve that we don't live in a perfect world and *%$# happens. Grieve for the child you had hoped for, and move on and love the child you have and stop demonizing the vaccine makers. I would rather have my child Autistic (which he is) than dead from a horrible disease like polio.

Anyone ever hear of the association method? Also, there is a good book for potty training, called "toilet training for individuals with autism and other related disorders" by Maria Wheeler.