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Filed Under Henry&Charlie on December 19, 2006

Henry is out of school this week, so he and I have been hanging out together. Yesterday after we dropped Charlie off, we went to get some groceries (specifically, toilet paper and pancakes, both of which are staples in our house). As we walked from the car to the store, Henry told me about how a temporary tattoo his friend had reminded him of the time that he played in the poison ivy in our yard and had a horrible allergic reaction. “And THEN,” he said, “I was thinking about the poison ivy, and I was ITCHY all afternoon!”

“I hate it when that happens,” I told him.

He thought for a moment, and then said, very seriously, “Mom, will I be big enough some day to get a job?”

I tried not to laugh. “Yes,” I said. “Absolutely.”

“Good,” Henry said happily, “because I want to invent a MACHINE that will TELL ME when there’s poison ivy, so I don’t step in it!”

We talked about how you can recognize poison ivy when you see it, and how I have no idea what it looks like because I’m not allergic to it (which explains why I let my four-year-old PLAY in it one lovely summer day), and how Henry will most certainly always be on the lookout for the leaves of three when he’s in the woods because he’s so horribly allergic.

But later, when I was giggling with Wade about “Will I be big enough to get a JOB?” I started to think about what my hopes are for Henry when he’s bigger. For the most part, I think I hope for the same things any parent does; I hope that Henry (and Charlie, too) finds his place in the world. I hope he finds work he enjoys, and that he is surrounded by people he loves. I hope that he is aware of how his actions affect other people; I hope he will do things that make the world a better place.

Most of the time, I don’t worry about these things, but sometimes, when Henry is having a particularly hard day, I do. Yesterday he had a great day; he was happy and peaceful and entirely pleasant to be around. But he was also just himself. We spent some time at the mall, looking at the decorations and waving at Santa and watching the big fountain. Henry rode the mechanical motorcycle and a few other elaborately expensive rides, because it’s Christmas and I was feeling generous. When I ran out of quarters, he struggled with his disappointment, and asked me probably fifteen times if I was SURE I didn’t have any more money; once he said, “You should have brought more quarters,” but he said it sadly, not angrily, because we had talked, more than once, about how many quarters we had, and we had counted them again when we got to the mall, and counted how many rides they would buy. He was disappointed, and it was a huge struggle for him not to give in to the disappointment, but after he spent about fifteen minutes just sitting in the helicopter, he decided that it was okay and we could go on to the next thing.

We watched the fountain for a long time. Henry called out “WHOA!” every time the water shot into the air; there was another child, probably about two years old, doing the same thing. There were also some girls about Henry’s age, who stood quietly and clapped politely when the fountain stopped running. Henry craned his neck to look up at the ceiling above the fountain, and said, “Do you think the water ever touches the roof there?” I said I thought not.

Last night, I said to Wade, “It’s so interesting to watch him. He just doesn’t see things the way other kids do, I think.”

And Wade said, “Yeah, but he’s also just like other kids.” And that’s the hard part: Henry is both entirely different and exactly like other kids.

I said the other day that I had reservations about the new federal funding for autism research. While I think that a 50% increase in the amount of money spent on autism is a good thing, I wonder about how this money will be spent, and how that spending will help kids like Henry. Or kids not like Henry.

The most frightening and frustrating thing about autism and related ASDs (which is where Henry falls) is the fact that despite what we know, we don’t know anything. There are a whole range of theories about what causes autism, and an equal number of theories about what might cure it. The possibilities are often overwhelming.

Federal funding for autism research is a good thing, there is really no way to argue with that. But this particular bill, signed just today by the President, limits the research in very specific ways: according to CBS news, “the legislation provides the National Institutes of Health with a list of possible research areas related to autism spectrum disorder, including an examination of whether the increase in autism diagnoses is caused by environmental factors.” Limiting what researchers can pursue will limit what they might find; in the five years allotted by the bill, it is entirely likely that no cure or cause will be found. And in the meantime, more kids will be diagnosed and more parents will need support.

In the two and a half years since Henry was diagnosed, I’ve met a lot of parents of kids like him. The one thing we all have in common is a sense of constantly struggling to fit all the pieces of our lives together. We cobble together teams of doctors and therapists who may or may not all agree about what is best for our child; we argue with insurance companies who choose not to pay for this evaluation or that drug; we meet with teachers and school administrators who don’t always understand and won’t always meet us half way. We explain, over and over, to friends and family, why our child is the way he is.

We worry about our marriages and our other children. We worry about our own health and sanity. We worry that because we don’t really know what we’re doing, we are doing all the wrong things.

We love our children just the way they are, but often the way they are is exhausting.

Of course, I have a child who is barely on the spectrum–he has, I like to joke, a touch of the autism, like people say they have a touch of a cold or the flu. I’m not able to really think about “curing” Henry, because that implies dramatically changing who he is, which isn’t what we want. I would imagine that for parents of profoundly autistic children, the idea of a cure is tantalizing, and I sympathize with them. But I doubt that in five years the wonderful people at the NIH will actually find a way out for those particular children; instead, I think we will see this money going to very specific research that will, most likely, not leave us any more knowledgeable about why our kids are the way they are.

My interest lies not in changing my child but in changing the world he lives in; if I have learned anything about Henry and kids like him (and there are, it seems, so very many kids like Henry) it is that they don’t process the world in the way the rest of us do. Because of this, they are perpetually out of synch, out of step, straggling behind, despite the fact that they are intelligent and capable. I would like to see more funding going to developing therapies and strategies for helping kids with ASDs function and succeed in the world. I would like to see better funding for school support programs, for teacher training and multi-sensory classrooms. I would like to see more specific diagnostic criteria and more clearly articulated treatment strategies. I would like to see more creative approaches to teaching and guiding these kids.

I think, in the end, this bill is designed not so much to solve a problem but to make people feel good. Merry Christmas! Let’s cure autism! Perhaps I’m being cynical, but I want to see more. I’m tired of looking for the poison ivy all the time, especially since I still have no idea what it looks like, even though I know it makes my child itch. I just want to enjoy the walk in the woods.

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Man, I hear you. I just want a walk in the woods too. An enjoyable walk in which the path isn’t riddled with eggshells

Autism: The Mounting Toll of Denying the Existence of Stealth-Adapted Viruses

The Centers for Disease Control and Prevention (CDC) will receive additional funding for autism research through the Combating Autism Act signed into law today by President Bush. Let’s hope it will use a modicum of this funding to confirm and extend findings that indicate active virus infection in the majority of autistic children. The viruses found in these children do not activate an effective anti-virus immune response and have, accordingly, been grouped under the term stealth-adapted. In spite of repeated requests, no formal effort has been made within CDC to perform stealth-adapted virus testing on children with autism. Contributing to this indifference is a lack of real expertise in atypical viral infections and a political concern that some stealth-adapted viruses arose from the simian cytomegalovirus of African green monkeys (SCMV). As confirmed by studies within the Food and Drug Administration (FDA), earlier batches of live polio vaccines were not uncommonly contaminated by SCMV.

Autism is a descriptive term for symptoms attributed to brain damage. By many measures, an increasing number of children are showing this affliction. Indeed, the phase “autism epidemic” is widely being used in the media. Yet, why hasn’t serious consideration been given to a potential underlying infectious cause? Again, this is partly because most of the professional dealing with this disorder are not microbiologists and sadly, also because a lot of money is being made from parents of an ever expanding pool of patients.

An infectious cause for autism is not only suggested by its increasing prevalence but also by chronic fatiguing illnesses that are commonly present in other family members. Parents of autistic children will sometimes deny any symptoms hoping to keep the focus on their son or daughter. Closer questioning, however, will often reveal less than stellar health with fatigue, impaired sleep, poor memory and other symptoms consistent with ongoing brain damage. Indeed, it is reasonable to have predicted that such parents were at an increased risk for having a child slip into autistic behavior as he or she faced the emotional challenge of socialization. It can also be argued that a stealth-adapted virus infected infant may be especially susceptible to additional damage caused by vaccinations that can potential over activate the immune response.

A useful course of action is for a small grouping of parents of autistic children to insist that the CDC or corresponding State Health Department, obtain a blood sample from their child and culture the blood in a manner suitable to demonstrate the presence of stealth-adapted viruses. Undoubtedly, some if not most cases will yield a positive culture. Such findings will help offset the politically motivated denial of the existence of stealth-adapted viruses and once more draw attention to the issue of SCMV contaminated polio vaccines. For additional information please refer to www.s3support.com or e-mail to s3support@mail.com

W. John Martin, M.D., Ph.D.
Institute of Progressive Medicine

beautiful.

This was beautifully written. Although none of my children have Autism, I feel your struggle to have your child belong, just the way he is. While I agree that funding to find causes and cures for diseases and disorders are good, I think more should be focused in on allowing the people with those difficulties to maneuver through life in an easier way, while still being included.

Thanks for sharing!

Dr. Martin, thank you for your impassioned response; I appreciate the time you took to comment.

But I respectfully disagree with your hypothesis. From what I have seen and read, I believe that autism, particularly the type my son presents with, is genetic, not the result of vaccinations or mutated viruses. This is perhaps why I am skeptical of the idea of isolating a cause or finding a cure; it would be the same, in my mind, as “curing” Henry’s blonde hair or his blue eyes.

Sometimes I want to make a little world for our Henrys where everyone “gets” it and we don’t have to explain, explain, explain all the time. I can catastrophize about the future with the best of them, but then I can’t get out of bed.

For now, I’m focusing on what happened a few weeks ago: at Henry’s school’s holiday breakfast, waiting in line to see Santa, his classmate B., who is on the spectrum, decided he was going to be in Henry and Josie’s picture with Santa. His mom started to explain to him why that wouldn’t be so, but then I looked at Henry, who was making googly eyes at me–Henry-speak in public for “I DISAGREE!”–and I asked him if he wanted B to be in the picture w/him and Josie. He nodded vigorously, and we now have a lovely picture of B cuddling next to Santa and providing a welcome barrier between my kids and the scary/wonderful Santa Creature they wouldn’t have talked to or touched on their own. And B’s mom and I have found each other, which helps a lot, just as reading about your journey with your Henry has helped me through many a day.

(Gee, maybe I should just write my own post on my own blog, rather than writing novels in your comments, huh?)

I thought Dr. Martin’s response was very interesting, and I am not entirely sure that I disagree with what he was saying– more research would certainly shed some light. I am always interested in the different ways ASD’s affect kids. Christian has it so mildly (The Aspergers) that I wonder why there is such a variety in the ways it manifests itself. A virus makes more sense to me than anything else I’ve found.

I agree with you also about a cure though– I don’t want to cure Christian, and I think it’s too late for that anyway. But I do think for the sake of children who are much more dabilitated by it, I am in favor of finding out what we can do to take preventive measures (if that is a possibility).

With regard to the funding limitations: They always have to specify a course of funding for the research. That is how they are able to pass legislation guaranteeing that money to begin with. And it doesn’t mean that they won’t change that research focus in five years. I understand your frustration with the limitations placed on the funding, but I think it has some positives: It keeps the money on areas that can do the most good for the most people (that is the hope anyway) and prevents researchers with just any bug up their butt from seeking to take tax dollars away from legitimate research.

That didn’t come out quite the way I hoped, but I have to go. I hope I generally made a coherent point though!

Jen, you make an excellent point, both about why more research is needed and why the funding is the way it is.

What a beautiful post, Susan. I loved everything you had to say and learned a lot more than I knew about autism. In my experience, I have yet to come across a case where I was stumped, but I’ve probably just been lucky. I normally do very well with differentiated instruction because I believe EVERY child can learn.

It’s up to ME to figure out how to transfer information to their brains.

May you be blessed with great teachers for him.

“It’s up to ME to figure out how to transfer information to their brains.”

Mocha, just when I think I can’t possibly like you any more, you say something wonderful like that. How do I get my sons in your class?

You’re the best.

At the risk of sounding cheesy, beacause I really don’t want to, this is one of the most beautiful, heartfelt and honest posts I think I’ve ever read on a blog.

Dr. Martin—

How does the stealth virus theory jibe with the concrete evidence that people with these diagnosis have definite structural differences in their brains vs. people without these diagnosis? For example, differences in sizes of the corpus callosum, certain areas of the frontal lobes, etc? A virus from a vaccine would not be able to cause these changes— they happened in utero.

As far as the comment about how much money is being made from the parents of these kids— more money could be made by finding a cure. That’s like saying it’s more cost effective to stuff kids into iron lungs than to give the polio vaccine. Everyone needs the vaccine, but not everyone would get sick without it. Finding a cure or a vaccine would make more money than diagnosing more kids ever could.

BTW, Susan— publish this post. Send it of to a parenting magazine, Good Housekeeping, the paper, whatever. But I really think more people need to see this.

I have been reading your blog for a while now (and enjoying it immensely!). I have a son, Henry, who is nearly 3 1/2. We are just starting down the path of figuring out what’s “wrong” with him. I have known for a long long time that he’s different. I don’t yet know what the diagnosis will be, but I’m sure we have a future of acronyms ahead of us. Anyway, sometimes I find it so completely overwhelming and depressing and I was so happy to fing your blog because you have such a wonderful and graceful way of writing about your son and are able to maintain a sense of humor. You make me feel like everything really will be okay. Thank you!

Thanks, Kathryn.

Such a wonderful post, Susan. You have really great insight into this issue. It’s inspiring. My girls have developmental issues of a different sort, so I don’t know what it’s like for ASD kids and their families, but I think I can relate. Thanks so much for writing this.

I can’t stop myself. I came back for more. (Also, in the off chance that you responded - and you DID! yay!)

However, now I want to take something back. I don’t think I’ve been “lucky” to not have a child like Henry in my class. In fact, I would be LUCKY to have him, for children like him become our best teachers.

Now, pack your bags and move on in with me, honey. I’d take your sons in my class any day. And I’d love doing so!

Mocha, I will TOTALLY move in, especially if you let me wear your shoes.

And I knew what you meant the first time, about being lucky not to have a child like Henry. He’s a terrific kid, but he’s a challenge; part of the challenge is this whole grey area about what exactly one does for kids like him, to help them learn and function. There are so many options, not all of which are viable for every kid with an ASD, and it’s hard to pinpoint the ONE thing that will work.

I’m still looking for it, in fact.

Susan,
Ditto.
Dr. Martin … whatever. I’ll just keep asking for full funding for IDEA, which is 30-years in arrears. I’ll believe any funding for anything when I actually see the results.

Everyone: get a copy of All Cats Have Aspergers. It’s funny, and very, very accurate about our Aspie kids.

Dear Susan,
Thank you for posting my comment concerning autism and stealth-adapted viruses. By chance I came across your blog site again late last night. I noted that a few parents expressed their doubts about what I had written. I am pleased to respond, especially since it provides a pleasant and constructive way to finish the Christmas break.
A primary viral cause for autism does not preclude influence from genetic factors. Indeed the male predominance attests to a major genetic involvement. Similarly, various toxins and nutritional deficiencies can aggravate various types of viral infections. The viral component is, however,extremely important since it carries an enormous Public Health implication. It also provides a clean target for directed therapy.
Some stealth-adapted viruses almost certainly originated from simian cytomegalovirus (SCMV) contaminated live polio virus vaccines. Once within the human population, these and other stealth-adapted viruses can pass between humans, including transmission from an infected mother to her unborn child.
Signs of brain damage, consistent with a virus infection, were indeed present at birth in children who subsequently became autistic. Among the more compelling studies are those measuring neuropeptide levels in stored umbilical cord blood samples.
My confidence in attributing autism to a persistent virus infection is based on many viral cultures performed on clinical samples from children with autism. There was overwhelming evidence of damage occurring to normal cells co-cultured with blood samples from autistic children.
I was well aware of the political consequences of reporting DNA sequences of an African green monkey SCMV in a stealth-adapted virus. I was less prepared for the lack of any real interest from other autism researchers or from leaders of some of the major autism support groups. I was focusing on a field that they had little or no training and seemingly little to gain.
Fortunately, studies on stealth-adapted viruses have led to a better understanding of an auxiliary, non-immunological defense mechanism that provides an alternative (non-mitochondria) source of cellular energy. The formation of alternative cellular energy (ACE) pigments in cultures of stealth-adapted viruses may explain why others have failed to observe persisting cell damage in cultures from autistic children. To my knowledge, no one in Government has ever tried to replicate my published work.
The ACE pathway has been validated in studies showing energy based expedited healing of skin infections caused by conventional herpes simplex, herpes zoster and human papillomaviruses.
A remaining task is to test ACE-related products in autistic children. Identifying autism as an infectious disease will greatly motivate Public Health authorities to support such studies. One step is for parents of autistic children to insist that Public Health authorities do the required culturing on at least a small sampling of affected children.
More information on stealth-adapted viruses is on the web site www.s3support.com
Kind regards,
W. John Martin, M.D., Ph.D.

Dr. Martin, I have to say that you are winning me over with your clearly articulated responses.

And also your incredibly polite tone.

I think that your research points to just how complicated the idea of a “cause” for autism is, and how desperately needed this federal funding is. I hope that the money will be spent in a way that truly benefits families affected by autism; I hope that, in a larger sense, no stone will be left unturned in the search for answers.

Thank you for your input, and for giving me something more to think about.

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