Interesting that an article that is trying to instill a one for all ~ all for one attitude has inspired disparaging comments on the therapies others chose to try to help their children.

So even in the "recovery" group there is dissension about "My way is better than your way!"

I know a mother that does everything and I mean everything from Biomed to ABA to Hypobaric chamber to flying across the country to talk to yet another "expert" on the subject of autism. She will do whatever it takes to try to improve her son's condition. You can call it "Recovering from Autism" or you can call it "Trying to help my son so he doesn't beat himself in the face until it bleeds therapy"

Her son is 12 so this mom is a seasoned veteran in this arena and although he her boy can not speak, is self injurous and still wearing pull-ups, much like the patient with a form of cancer that to date has no cure she is willing to try anything and everything to better her son's chances for survival. She may not get the answer with the first therapy trial but that does not mean she doesn't keep trying.

i am not a bio-med mom. i don't happen to think that it's appropriate for MY child. however, that has no effect on the fact that i completely support your right to help YOUR child in the way that you think makes the most sense.

some time ago, i wrote the following .. i copy it here in full support of your idea that we all desperately need to respect and support one another ....

'As advocates for people with autism, we ask people to open their hearts to those who are different from themselves. We ask them for compassion and tolerance. I hope that we can interact with one another from that place – a place of tolerance and understanding and above all, respect.

I’d hate to see any of us spend what could be useful and productive energy tearing people down.'

our kids need a LOT of our energy. we need a little of it for ourselves too. it's far too valuable to use throwing stones at each other. so yeah, i'm with ya sister.

We also do ABA. It's helped my son a great deal, but our main focus was getting his health better. We've been lucky enough to do both at the same time. They're working wonderfully together. :)

Hi Cherry,

I think your observation about some kids improving in spite of having no treatment is a good one. I think it is very possible that some proportion of kids can clear the mercury out of their system naturally--due to sweating a lot, eating foods with lots of cilantro or some other natural chelator, or possibly because they are just genetically set up to do it and didn't get that toxic a dose to begin with. It could well be those are the ones who seem to get well from ABA alone.

I think other kids reach a toxic tipping point and just start accumulating more and more mercury and other metals, or start succumbing to viral and bacterial infections, and then just get worse without biomed interventions to help them get the metals out, restore their natural means of metal excretion, help them fight off invasive microbes, and restore healthy populations of the beneficial ones.

Possibly part of the reason that there are so many different paths to recovery is that there are many different levels of toxicity; the mercury ends up trapped in different places and in different amounts in different kids (resulting in different symptoms), and then there are differing complicating factors like diet, genetics, other medications, infections, additional vaccines, tooth fillings, other environmental mercury exposures, tylenol use, antibiotic use, differing microflora, etc. Thus what works great to help one child recover may not work at all for another because each child's exact mix of underlying problems is likely very different.

Just my opinion.

Great article, Thank you Crystal!

I will say I have encountered a few more splintering opinions and segregated groups in those parents like us who believe "autism is treatable." There are quite a few of us doing biomedical intervention, but there is also the THRIIIVE movement, homeopathy, herbal phytochemistry, naturopathy, cranial-sacral therapy, quantum neurology, light therapy, accupuncture, energy healing, etc.

I have had two conversations lately with alternative practitioners who have told me that biomed is just a 'band-aid' approach by supplementing deficiencies and that sequential homeopathy can treat the immune system. In a normal person, with normal immune responses, I would agree with this statement. In fact, homeopathic allergy treatments can be very helpful with those with excess histamine and inflammation. Unfortunately, many of our children have a complex and dysfunctional immune response and homeopathy by itself may not be able to help them. I am not posting this to disagree with those taking that approach, but just making a point that even in our own community who believe that "Autism is a medical disorder, and treatable" we have many fractured opinions. All of us have strong opinions because we know what has and has not worked for our own children. I am the first to admit that I have an opinion, based on my research and evidence based outcomes in my own child.

I have learned to be respectful of others, and also know that what has helped recover my son (biomedical protocol) has not helped others. I am happy to give advice when asked, but careful because sometimes I am attacked for supporting biomedical from those who believe other treatments are more effective or 'natural.'

I was not prepared for this at a recent conference, and was even challenged by a few practitioners who were very against some of my 'mainstream' protocol using antivirals, and told me I should be using naturopathy instead.

I used to be much more outspoken about research based interventions, but have lately come to realize that some do not want to see the research nor do they trust it.

It is sad, really, that our community is so divided on the autism treatment issue. Maybe we can all learn to be more respectful and inquisitive rather than authoritarian and biased.

Is Someone Paying These People wrote: "What *I* find telling is that these people are never behind us when it comes to trying to get insurance coverage for autistic children. Now why is that?"

People have spoken of ABA as a commonality between the biomed parents and the neurodiverse. Perhaps I'm unclear as to what exactly ABA entails, but I've not seen this commonality, myself. Don't ABA practitioners work to stop the flapping, the spinning? I've spoken with those in the ND community who see stopping these things as totally unnecessary-- like trying to change a left handed person into a right handed one, or even rather like training a dog, which they find quite disparaging. Unless I am getting ABA mixed up with some other form of therapy.

I myself have always thought that perhaps if the NDs and the ABA supporters had anything in common, it was their feeling that what the biomed parents do is a waste of time. I think, though, that the ABA supporters see it more as a threat to their own livelihood (forgive me if I'm offbase again but I can't help but think it's better to speak of these things than not to..) Isn't ABA treatment one of the few treatments for autism that is considered legit and covered, at least in some states and to some degree, by insurance? I know that it's terribly expensive, and if it's covered by insurance that could be part of the reason, I think, that it is so very expensive. Again, maybe this isn't fair of me, but I can envision people with a very lucrative career in 'helping' people with autism who are suddenly faced with something that more resembles a cure for autism. They would, I would think, feel rather like buggy makers as cars were becoming more and more common. Although it's my own belief that there's probably a place for both biomedical and some limited behavioral treatment. Maybe there are some in the ABA community who don't see it that way-- who see only a limited size pie, and other people taking some of their pieces.

At any rate if I've seen any commonality between supporters of ABA, and the neurodiverse, it's been more along these lines. That they see a common threat, rather than a common path toward a cure.

I myself have some issues with trying to get insurance coverage for children with autism. I'm rather torn on the issue. On the one hand, I see it as a necessity. I've not dealt extensively with the parents of children severely affected, but it doesn't take much to see that these are people desperately in need of help. However, if insurance coverage is going to be only for ABA and similar therapy, I'm not convinced that this would be in their best interests. I've told myself that perhaps it might be the case initially--that if insurance companies are forced to cover treatments for autism the first treatments that would be covered would probably be those like ABA, the ones that have more acceptance with the mainstream medical establishment right now. But I would hope and pray that that would change, and I'm not really convinced that it would, in time. That it would change to encompass biomed treatments. What I'm afraid of is that those who practice ABA are as strong politically as those who've worked for decades to keep a lid on the evidence for vaccines as a cause of autism.

What I, personally, would like to see is not so much insurers paying for the epidemic we have in autism, but the people who've caused it. The vaccine makers. But then that is easy enough for me to say as none of my children are affected enough to be on the spectrum officially.

As to the question of whether or not someone is paying these people, I've heard it said "follow the money". Lol, as though THAT were an easy thing to do!

"Is your mom a doctor? No, she doesn't sound like a credible expert, does she?"

http://www.youtube.com/watch?v=iBELC_vxqhI

Charlotte, we try other types of intervention because we hope they will work, we keep at them because they do work. It's wonderfull that ABA worked for you, but I am just as strong of a believer in Biomed. I know it works because I see the results in my son. We keep careful detailed notes about his behavior and the changes caused by various supplements or treatments. With supplements we often challenge the results by taking him off the supplements to see if the positive results go away then reintroducing them if we see they were effective. For example, methyl b 12 helps my son with speech, he has better expressive speech when he is give the shot. After a week without methyl b he has difficulty forming sentences, give him a shot and the next morning his speech is back where it should be. Same with Pycnognol, carnitine, etc, we can clearly see the results from using these supplements. I know the GFCF diet has some effect on my child by the same method. My son is not a huge responder to the diet but teachers did note that he was more focused in class when he was on the diet, we also saw a positive change in his digestion when he was on the diet. The whole point of this article is that we all need to work together to fight the common enemy, Autism, not pick each other apart on what works and what doesnt. Even within biomed intervention every child responds to different things, for some kids its the diet, others it antifungals, etc. Why knock a parent for doing everything they can to help their child heal.

Outstanding article! We have the same mantra...it really does keep me going somedays.

The ND crowd does not bother me, because I hardly know they exist! Sorry! What I have living in my home is a --- am not sure either PDD-NOS or aspergers - son. what ever he is, I do know that he would rather have an electric fence tied to his toes than to read a blog, type, speak of autsim, or deal with the computer, so I can't relate Sorry Roger don't mean to insult at all.

What bothers me is the parents that can't figure it out! I just ran into one of them this week. The neurologist's nurse practioner! Her son had Kawaskis. Before he had Kawaskis he had a painful, red swollen reaction at the site of his vaccine and ran 105 temp with it then some time later he had Kawaskis! She said he was in the hospital for a week, and when she took him home and gave him a bath he had this mottled looking skin (vascultisis). I questioned her and she said yeah that when he was entering school he had another of the same vaccine and again ran a temp of 105. Yet, his mother, a nurse pactioner said she thought the kawasikis was just an after math of a virus! Well I just guess Kawaskis is just a common virus like roseola. Just haven't isolated that virus yet - and never will!

Parents can not relate to a reaction than occurs 3 weeks or 6 weeks after the initial vaccine. Yet, if you read the reaction on some of these shots it has a very long time between the immunization and the reaction!

Some of these babies also react for a mere few minutes and then fall into what seems a peaceful sleep as did my sister-in-law with her twins. For 20 years she shook her head when I would ask. This year I told her it only takes minutes, and with four babies all under four years old, she could have easily missed it. I told her to look at the time when she had the vaccine when they ended up in the hospital. It was six weeks, You know what? She finally believed me. It is about time it only took her 20 years.

Unfortunately, money is an issue with a lot of parents on both sides of the fence..Do I pay my mortgage payment? Do I pay my electric bill? Or do I buy my little guy's supplements...Do I pay for ABA....this is reality.

There are more than just the two camps in the autism community... I am neither a bio-med mother or a ND mother. I am a believer in ABA. Actually, more than that... I am an advocate. Why? Because I now have neurologically typical children thanks to several years of ABA therapy. Not high functioning ASD children. Not Asperger children. Neurologically typical. They have been tested and they are fully recovered. We never put them on a special diet nor gave them any supplements. We never rode donkeys or swam with dolphins or went to music therapy. We never breathed in pure oxygen or did massage therapy. We just did ABA, everyday for 5 years. Oh, and they all have had their vaccinations -- and none of them had time-correlated regressions. Our son was 'off' from the time he was born and our daughter began hand flapping and toe walking at 17 months -- well before the 18 month MMR vaccination (and well after the earlier one). Our second daughter was 15 months old when she began uncontrollably tantrumming and she had had NO needles whatsoever up to that point (other than the initial hospital ones). I had no hesitation whatsoever about vaccinating our 2 year old. Whatever genetic mix we created in having our children, I believe caused their autism. But, quite frankly, I do not care what caused it -- any more than I care what caused some of them to have straight hair or curly. I care about what cured it. What I don't understand is that even though ABA has been recovering kids since the first published study of 1987 -- that's 22 years ago -- but people keep trying new methods instead. Can someone tell me why? Please, I'm serious! Why do you choose supplements and dietary restrictions instead of ABA? I really want to understand your reasoning. Really, I do!

Another bad day with my bowels.Just getting on the computer.

I would like to know something.Is there anybody who does biomed whose child just has Asperger's with no other health, developmental,sensory,or neurological issues?

I wonder how many of these pro-ND parents,and bloggers fit into this category.It may just be that they can't relate to those of us who do have serious medical issues.I have found this to be one of the biggest divides in autism,as big as pro or anti neurodiversity.

As medical researchers,and doctors,many of whom are big advocates of neurodiversity,do their best to chip away at the idea there are any medical conditions that exist with autism,this is only going to get worse.No we can't all get along.This is a war,and the sooner everyone on both sides realizes this the better.

What I find is the biggest failure of the biomed movement,is their failure to reach out to adults,who have both autism,and coexisting childhood onset medical conditions.I can tell you,from my own experiences,unless you seek it out yourself,you are not going to get any help.And it probably won't be from anybody other than a DAN! doctor.The immune and metabolic conditions are so weird, that no "regular" doctor understands them,and the patient is not believed to be sick.

I wonder if a lot of the adults whose autism was diagnosed before 1980,who might have serious medical issues,have been stuck in homes,where their lives have been strictly managed,and they have not had the freedom to spend long hours on the internet researching this stuff,a benefit I have had from living with my mother.

Homes run by people,who believe only in the "triad of impairment"model of autism,and treatment consisting of chemical straight jackets.

Which may be one reason why the only adults you meet with "autism" are either high functioning neurodiversity types,or outright frauds.

I've enjoyed reading all of the responses. Gregg, I'll be purchasing a coffee bean grinder very soon. :)

Bensmyson, great points. If it weren't for biomed, my son may well have been dead by now: run over by traffic, drowned in a body of water, or maybe lost in the woods somewhere.

I too use the coffee mill grinder method and have a little capsule filler by "The Capsule Connection". I found that a compounding pharmacy here would sell me empty capsules that are opaque (white) so I can fill a bunch, tweak them as necessary for the Yasko protocol and my son can't see any colors of the supplements(heavy sensory issues)! Works like a charm.....

Anna, I am glad some people have offered some resources for funding of biomedical treatment. I also want to mention that, although some treatments such as HBOT are very expensive, some are not. The gluten-free casein-free soy-free diet is not necessarily expensive. See the TACA web site:

GFCF diet on a budget:

http://gfcf-diet.talkaboutcuringautism.org/index.htm

GFCF diet on food stamps:

http://gfcf-diet.talkaboutcuringautism.org/gfcfsf-diet-on-food-stamps.htm

Some treatments have some cost but are not exorbitant, such as multiple vitamins and probiotics from Kirkman Lab and digestive enzymes from Houston Nutraceutical. Maybe even these treatments are out of reach for you at this time. But look for good support from some of the great organizations out there such as TACA. If you have computer access, there is so much available to you, even if it’s not in your geographic area.

Very best wishes to you and your son! May you find a place to live and not be homeless!! Hang in there, and don't give up hope and reaching out for any support available.

Having been at this twelve years now, I'd have to agree the divisiveness within the autism community has been one of the most frustrating aspects. For the life of me I will never understand how anyone, let alone a parent, can embrace this disease as some sort of a twisted blessing and do next to nothing in response. I've seen people buy expensive houses and cars and claim alternately that they can't afford biomed/behavioral treatment and that their child doesn't really need it. I've also seen single moms on welfare and couples teetering on the edge of bankruptcy be ferocious advocates and figure out a way to get services and treatment for their kids. I believe it all comes down to selflessness and individual character. So at the end of the day, after the anger and sometimes jealousy toward the "ingnorance is bliss" crowd, what I mostly feel is pity.

Crystal, great article. And you're right-I don't think too many biomed moms go screaming around pontificating about how great they are because they're curing their kids autism, while dissing the moms who choose not to do it or can't because of the money challenges. My heart goes out to you all!!!!!

Anna please check out Lend4health.org I hope they can help you. They provide financial aid for parents to pay for treatment. God bless you. Next time I am cursing my job or my ex I will remember you.

Thanks for your post, Crystal. I too live in a mess of empty capsules & supplement dust! Will be reading your blog.

Over the years I have witnessed serious divisions even inside the autism biomedical community. The fight (I won't call it a discouse as the word just doesn't fit) whether or not to support the final version of the CAA, lawsuits over digestive enzymes, etc.

Another serious division has been that caused by the harsh criticisms and intolerance shown by many followers of the Andy Cutler Chelation Protocol for those following the "dangerous" DAN! Consensus Chelation Protocol. This divide, which has been ongoing since I first looked into chelation back in 2000, has been stoked over the years by continuing criticism of DAN! Docs or anyone who does not agree with Andy's rigid dosing schedule on the Autism-Mercury Yahoo Group. This has caused more division with the autism biological community than anything ND has done and has resulted in parents turning away from the #1 rated autism biological intervention. It needs to stop.

It's tough to embrace something that threatens a cultural environment that has existed for many generations in families where kids typically grow up, enter school, have friends, get a job, get married and raise a family. I've been told that, "Ben doesn't seem that bad, you're lucky" and I felt like saying, "Hey, if a boat leaks, no matter how big or small the leak, the boat will still sink dumbass." There is no such thing as "not that bad" when it comes to atusim. And people seem to think autism is not a deadly illness because they don't see what the parents see and hear and read. I've actually had a couple of people say that "at least autism isn't fatal." OK great, Ben won't lay in a bed at hospice and succumb to autism, super. How do they know that to be true though? Who told them that? Anyone study that?

Do they know for a fact that a 12 year old autistic boy will not drown in a pond or river because he impulsively reached out to touch a leaf floating by
http://www.heraldnet.com/article/20090711/NEWS01/707119928/0/SPORTS or that he
won't get killed by police for failing to cooperate
http://archives.chicagotribune.com/2006/nov/19/news/chi-0611190063nov19 ?

Autism is indeed killing people, a woman holding her autistic child jumps off of a bridge in the UK
http://www.telegraph.co.uk/news/uknews/1340989/Mother-jumps-to-death-holding-her\
-autistic-son.html , another woman tried to talk her 16 year old into stepping off of a bridge then strangled her daughter when she refused to jump http://spidernet.nl/~martijn_dekker/internaut/news/9807/30.casey.spml, a mother,
a well educated doctor, smothers her autistic daughter
http://en.wikipedia.org/wiki/Karen_McCarron, a grandmother kills her autistic grandson and herself because it was too much to handle
http://www.dailypress.com/news/wtkr-chesapeake-murder-suicide,0,7632434.story. An autistic nine year old recently drown in a fountain at a park, the water was 3 inches deep. Yeah autism isn't deadly, not at all huh?

These stories are extremely real, and the number of stories of autistic children suffering and dying is horrendous, usually it's the caretaker that's overwhelmed reaches a breaking point and snaps. Was the caretaker married? Have any help? Support? Was she seeing any improvements, any hope? Who was counseling her? What advice was she given? We've all seen one variation or another in the news about a discovery of a child being kept in a closet, malnourished and "retarded" while other children in the house are well fed and seem to be unharmed.
http://www.tampabay.com/features/humaninterest/article750838.ece

The other part of this of course is the staggering numbers of children that stop looking their parents in the eyes, spin like a top, flapping their arms, throwing a violent fit in the middle of a grocery store over the change in packaging of a stupid cereal box. This is my 9/11 and my enemy is autism. It took Ben from us, and replaced him with a different child, one that looks exactly like Ben. He was taken from us by a vaccine that we were told would not cause autism, DOES NOT cause autism, will NEVER cause autism. We were given a video of Dr. Offitt from the doctors office as a way to "inform" us parents as to the safety of vaccines. Yet a doctor the other week, one that serves on the Board of the American Association of Pediatrics, an organization notorious for denying the vaccine/autism link, looked me in the eye, and said, "I cannot rule out a vaccine as being the cause Ben's autism. "

I have little tolerance for those that "encourage" us to embrace autism. Yes, my son is the joy of my life. We are extremely fortunate that he has recovered so much in such a short time, but we work at it, constantly. I want to do everything I can to rescue him, by any means, at any cost.

I read a story the other night that brought me to my knees, a woman wakes on her downstairs couch at 4AM to the screams of her 4 year old daughter at the top of the stairs, she looked and their were flames on the ceiling on the second floor. The house was filled with smoke. The mother ATTEMPTED to climb the stairs but was turned back because of the "heat", made it as close as 10 feet to her daughter. The fire seemed to be coming from her 13 month-old son's bedroom, he was also screaming. The mother turned away from them, dialed 911, went outside to pray waiting for help.

The little girl survived, the boy didn't. It was all over in about ten minutes.

I read the story to my wife and asked, "Would you even have to think about climbing those stairs?"

What we do is instinctive, to us there is no choice, we don't even think of other options, we must brave the heat, climb those stairs, blindly risk everything to save our kids.

Do I want to kick someone for waiting at the bottom of the stairs, waiting on God, "accepting" fate without a challenge? You're damn right I do, and the next one that attempts to counsel me to wait at the bottom of the stairs, to accept it, will get the living shit kicked out of them. I have absolutely NO respect for them. Their rationalization of their passive stance, their denial, their fear, does not belong ANYWHERE near my situation and those of the rest of us who are having our clothes burned off of our backs as we work our way thru fire to find our children.

F'em! AND the horses they rode in on! Either you're for us or you're against us, there is no middle ground with me. I'm too damn tired, too burned, too pissed right now to hold hands with a bunch of pussies.

And here comes the H1N1 vaccines.

Crystal, loved the article. I'm with you!

Awesome mantra. I feel like so many of us are doing the exact same thing at the exact same time. Your words are inspiring.

Hi Crystal, We've been doing Yasko for 3 years. Get yourself a coffee bean grinder for the pills. My hands no longer bleed.