A Letter to Senator Dodd on Autism Insurance
A Mother's Love as Child Battles Cancer

United We Stand, Divided We Fall

Kentucky By Crystal Engler

I'm a biomed mom.  Always have been, always will be.  If my child recovers or stops the protocol for any reason, I'll still be a biomed mom.  It's in my blood.  I have a recovery sticker on my dilapidated Taurus and lead in my feet (literally).  Don't tailgate me.  I have a surmounting debt problem and a bone to pick with the pharmaceutical companies.  I can clean up an explosive diarrhea episode while quoting Blue's Clues (thanks Big Pharma for sparing my child from the mumps!).  It's just who I am now.

That being said, what I don't understand is the great divide that sets the autism community apart.  Aren't we all in it for the good of our children?  I've fought enough in my life; I don't care to do it with autism parents.  Fine, some believe autism should be embraced, some think it should be recovered.  Do what you have to with your child.  Honestly, I don't have the time and energy to care.  What gets me are the parents who blast those of us who are working for a recovery.  I've never heard a biomed mom publicly raving (especially on a regular basis) about how neurodiverse mothers should be fighting for their children.  However, I've come across many anti-biomed parents who are hell-bent on trashing Jenny McCarthy and others like her.  Why?  Why do we have to be separate in our fight?  As Kentucky's state motto goes, "United we stand, divided we fall."  Can't we all just get along?      

I'm going to explain my side of the story once, and only once.  This is why I do what I do.  This is why I'm a biomed mom.  I recently read a blog entry from a ranting ND.  I pictured her foaming at the mouth, saying something about accepting our children the way they are.  Shouldn't we be happy with our healthy kids?  Remember the "up" side of autism.
Oh, that's special.  Is there an "up" side to childhood cancer?  What about juvenile diabetes?   Yes, I believe my son's autism stems from the vaccines.  He's physically ill.  Chronic viruses, bacteria, yeast, heavy metals...you know the list.

Earlier this week, I armed myself with what looked like a gas mask and construction goggles.  Was I fumigating the house?  No, I was mixing my son's supplements (the powder flies all around the kitchen and I take protective measures very seriously).  My husband looked at me and said, "You look like a transformer.  I'm just waiting for you to morph into a bug or something."

I tried to picture it.  I figured it was more believable if I transformed into Joan Crawford or someone of that nature.  I do hate wire hangers.

Anyway, as the minutes turned to hours, I sat on the kitchen floor mixing a month's worth of supplements for my son's biomedical interventions.  How far would you go to recover your child?  It was more than a question that popped in my head.  It was a mantra.  I said it as my hands bled from crushing hundreds of supplements.  How far would you go to recover your child?  I said it while rolling around in leftover pill capsules and stray supplement powder. 

How far would you go to recover your child? 

I said it when I looked at my feet and realized it'd been three weeks since I had the time to paint my toes.  How far would you go to recover your child?  I said it when I added up this month's supplement cost in my head.  How far would you go to recover your child? 

Me? I'm going all the way.

Now then.  I believe we can all compare and contrast the ND's and biomeds (why do I feel the urge to draw a Venn diagram?).  On various levels, we're extremely different.  But at the root of it all, like it or not, we share something.  We share autism.  No matter our differences, we should cast the weapons aside and ceasefire for the "greater good."  By that, I mean the health and welfare of the autism generation to come.

Crystal Engler is the mother of a four year old son with autism. She is a former elementary school teacher turned freelance writer. She is the FEAT vice-president for the western Kentucky chapter. Her family is heavily involved with Dr. Amy Yasko’s biomedical approach. She blogs HERE..

 

Comments

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denise

I think it's sad when parents have the attitude "biomed is not for my kid." Why? I really feel for kids of parents like this. They are missing a chance at recovery and a better life. Selfish on the parents part in my opinion.

Nancy

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.

Just another mother

It's just not true that ND mothers aren't attacked by biomed mothers. I've been verbally attacked on quite a few occasions. I've seen it all--accusations that we're lying about being mothers, nastiness about how our kids must not actually be impaired (free clue: if there's no impairment, it doesn't qualify for the diagnosis), even one particularly irrational individual proudly announcing that she didn't need my approval--after repeatedly attacking me in multiple threads, while I was forcibly silenced by a moderator who encouraged such behavior by cure-seeking against ND parents.

You probably don't recall seeing it because most of us tend to leave such conversations after being beaten up once or several times. Many of us, particularly those who are HFA or AS ourselves, find such abuse hard to take and would rather just stay out of the discussion entirely.

jess wilson

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.

Heidi N

I'll tell you my reasoning for not doing ABA. And all my children are indistinguishible from their peers as well with only biomed, after only one year, and no ABA. But, the reason I did not choose ABA is because even the ABA therapists and the parents doing ABA said recoveries were very rare, and they had yet to see one. So, if parents would have told me that ABA reocovered their children, than I would have done it. The only recovery I have ever heard of from anyone from ABA, just thought her boy was recovered, but when he was put into kindergarten, she learned he really wasn't recovered. I don't complain about ABA at all. I think it's helpful, but I didn't do it because I didn't need to. I would have if biomed failed. I am willing to do whatever. But, the whatever just happened to be biomed.

Crystal

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. :)

mom2Con

Crystal,and all die hard biomedders, just a question-Why do you have to choose either biomed or ABA??I say YOUDONT HAVE TO CHOOSE! Where are the rules?? If you have a manual, please post it! Maybe everyone could just get along if we were not made to feel like we had to take sides. I do some bio med, some ABA, some OT,speech..what works for my kid. I do not do ALL biomed I read about, I do not use ALL the OT's suggestions,etc...lets keep an open mind.

Sue

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.

Cherry Sperlin Misra

Just a note about improvements in autistic kids and what causes them- I would like to mention that here in New Delhi we dont see many if any kids who get a lot of ABA therapy. Some get a little and many get none. There are few who get any biomedical treatment and it appears that most havent found it successful. Nevertheless, in my school I have now seen , many times , children who improve a great deal with no therapy of any kind. What we typically see is a boy who has several symptoms of autism at age 3 and by age 4 and a half most symptoms have vanished and perhaps only we in our school can still notice anything. Now I suppose that if these kids had got that fabled "Early diagnosis" which we have to hear so much about, and got some therapy, the therapy would get the credit for their improvement. In my opinion, its really very simple- Stop the mercury vaccines;stop the fish if any and let the body heal itself
I am not implying that this is the way things SHOULD be done - I would much prefer having biomedical treatments. I know that all kids will not improve substantially,. But I do think that it is very interesting that it appears that in many if not most cases the body has the ability to recover if given a chance.
We do have ND advocates too and unfortunately, so far they dominate the scene in Delhi and it is very upsetting to meet a parent who went on giving her autistic child mercury vaccines because the ND group would not even mention the possibility that mercury is involved in autism. It should be noted that what we have observed may be related to the vaccine schedules in use here and these are , of course, not the same as those used in the U.S. Once again, I would like to mention that we have a huge tidal wave of autism in India, which began after year 2000, when many more doses of mercury vaccines came into frequent use. Need I add that this, of course, is a COINCIDENCE .

Can't_we_all_get_along?

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.

Sue

For Charlotte,

Your statement that you really want to understand why people choose biomed instead of ABA does not ring true. If you read what you wrote, you state that your kids did not regress after vaccinations but were different from birth, and you do not write that your kids suffered any gastrointestinal problems or immune problems, -- only behavioral issues. You say you don't care about what caused their issues, but only about what "cured" them. So obviously you aren't ND as you felt your kids had issues that needed fixing and you were willing to do what you thought would best help them--and fortunately for you, ABA alone worked.

However, it seems clear to me that parents who are using biomed are following the exact same reasoning as you--they are doing what THEY think will most likely help their children. And unlike you, many of them have kids who DID seem to regress following vaccines. Unlike you, many of them have kids who DO have gastrointestinal problems, or constant sinus infections and/or asthma, eczema and/or strange rashes, and reactions to certain foods-- all IN ADDITION to the behavioral issues.

To my knowledge, ABA hasn't been shown to have any effect whatsoever on gastrointestinal distress, or sinus infections, or asthma, or eczema, or rashes, but diet changes, vitamin supplements, treatments for heavy metal toxicity and other biomed interventions DO help improve these conditions--so it seems pretty obvious to me why many parents choose biomed in addition to, or instead of ABA.

When one has limited resources, one chooses what seems most likely to be of real help. I don't know about you, but I have never been able to focus on learning much of anything, or even accomplishing much, when I am sick with stomach/intestinal pain, or itching miserably with hives or eczema, or unable to get any sleep because my mind is racing or I can't breathe because my sinuses are clogged or I am constantly coughing. So it is no mystery to me why sick kids don't seem able to learn better behaviors or how to do things that for a child are difficult new skills.

The answer to WHY parents are choosing biomed interventions to help their kids is obvious--biomed interventions HELP many kids feel better, act better, and learn better. There is no mystery in that.

The real mystery is why some people think that a behavioral reinforcement program will somehow change how a sick child behaves and improve their ability to learn. The real mystery is why some people can't understand why many parents want to heal their children's physical health problems before, or in addition, to treating their behavioral issues.

Charlotte, I think if you try to look through the eyes of other parents with different children than yours, and think about what THEY are seeing and experiencing, you will be perfectly able to understand why ABA is NOT the solution for all, or probably even most, affected children--even if it WAS a total success for yours.

Bad apple

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!

Elizabeth

Charlotte, most health insurance providers do not cover ABA therapy. Schools and DHS pay for it in some states, not mine. I have wanted ABA for my son for over 2 years and have not been able to afford it. At $125-250/hr., I would have been able to afford about 20 hours over the last two years which would have done NOTHING for him. You said your children got ABA every day for the last 5 years. Why aren't more people doing it? $$$ MONEY $$$

Besides that, it would have done nothing for my son's gastrointestinal pain. Should a child be taught not to express pain (scream) - for God's sake, I hope not! You cannot to behavioral interventions on biomedical problems, and most of our children have several medical-related problems that CAUSE their behavior. My conclusion is that Biomed is a MUST and ABA is a luxury. The only thing I wanted ABA for was a method of teaching, it is great for that. Unfortunately, learning has to wait as medical takes priority.

Take Care,

Liz

Josh Day

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

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

anna

Thanks everyone for the support and links. I will go thru them tomorrow. I am exhausted and just got the little one to fall back to sleep after his seizure. This has been a devastating day for us. I feel like someone has repeatedly kicked me in the ribs. I just want to give up.

Bensmom

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.

Nancy Naylor

Charlotte,
I'm glad that ABA worked for you and your kids, but to answer your question: ABA doesn't work for everyone. It's also expensive and time consuming. Stories like yours are relatively rare. I know that the ABA folks talk about recovery, but I have never personally met, a parent that tells me what you have. I've met a few that tell me bio-med intervention saved the day. For some of us it just makes sense that a biological imbalance is the cause, so biological intervention would logically be the solution. People don't get autism from lack of ABA. But, obviously, ABA can be the answer for people like yourself. We each have our own path to take, so everyone should do what works for his/her family. I agree that we should stand united in spite of our personal preferences.
Also...
Let's all put in prayers for Anna and people like her. I can't imagine what you are going through. Instances like yours are clear examples of why the system needs to change.

Chrissy

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

MinorityView

Charlotte, maybe it is the time-correlated regressions? the severe physical symptoms? What worked for your children might not work for a different group of children...

Benedetta Stilwell

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.

bensmyson

" Oh, and they all have had their vaccinations -- and none of them had time-correlated regressions. "

If you say so.

"Whatever genetic mix we created in having our children, I believe caused their autism."

I got a question though, excuse me if I'm a bit dense, but if this autism your children suffered from was caused by genetics, what did ABA do to change that DNA? I mean don't get me wrong, ABA is a valuable tool, sort of like a hammer but not everything is a nail, at least that's my experience.

Wendy

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.

Chris

Roger, here is a blog of a mom whose son "just has Asperger's" but she does biomed, because he had digestive issues and her regular doctors gave her no help. You can scroll back through the archives and read her story; her son looked so incredibly sick in the photos before she began interventions; I wanted to cry when I first saw the photos.

He is in what I believe she considers "managed recovery", I hope I didn't quote her wrong, as in he is pretty close to NT as long as he stays with his dietary restrictions and sups.

http://ourtravelsinbiomedland.blogspot.com/

Petra, I hope you don't mind that I linked Roger to your blog!

CharlotteRobinsonRocca

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!

Stagmom

Roger, you can hardly expect us Moms and Dads to go out seeking adults on the spectrum to introduce to biomed. For those who are high functioning enough like you, the info is online - of course, it surely must take some coaxing to convince people they might need treatment. Or to connect physical ailments with autism, having been told for a lifetime autism was strictly behavioral.

The epidemic began in the 90s - older parents simply did not have the access to the info - no Internet, no University of Google. And frankly, were told so resolutely and were so alone that it would have been very difficutl to get help for their kids like you. Have you read, Boy Alone by Karl Taro Greenfeld, about his brother Noah. His parents were "early adopters" of biomed when it mostly meant some added vitamins.

Yours,

KIM

Roger Kulp

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.

Is someone paying these people?

Bad Apple,

I have noticed this as well. Another interesting thing I have noticed is that all the scienceblogs like Orac and the like have a HUGE ND following. Why is this?

Think about it; the medical community says it cannot possibly be vaccines and we need to stop throwing money at that area and we need to look for the real causes of autism so we can find a cure or effective treatments. Yet every medical blog that talks about this topic has a very heavy ND following, and ND's philosophy is that autism is a natural variation, so curing it is wrong as that would be destroying the person.

We want to know the real cause, but we will jump in bed with people who say it shouldn't be cured. This makes no sense to me.

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? ND and biomed groups both tend to agree that behavioral therapies, which SHOULD be covered by insurance and are considered scientifically approved, are important to helping autistic kids succeed, no? This should be one area we are united on, yet whenever this topic comes up, ND is silent. Why is this?

Anyone?

Crystal

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

Bad Apple

Here’s one I probably shouldn’t wade into. I probably shouldn’t put in my two cents cause it’s really worth about that much, as I should say that I’ve not spent a lot of time, especially recently, reading what the NDs write about and trying to understand their viewpoint. What little I’ve read and understood so far angers me too much.

When my oldest child was three and almost diagnosed and I first became really interested in autism (I’d been interested before but not nearly so much), it was right about the time I first got internet access. And that was when I found out that there were other people out there, adults, who felt that they were on the spectrum. Like me! I remember how at first I felt so relieved and so happy—at last, I thought, there’d be people who’d understand me!

Well, let’s just say it didn’t work out quite as I’d hoped.

Perhaps if I didn’t have a child who has experienced some serious gastro intestinal troubles in addition to her behavioral issues that led people to suspect autism, it would be easier for me to tell myself that having autism just means being different. Perhaps it would be easier for me to see it as a good thing. But I really don’t think so. I’ve always sort of felt that it sucks, even before I had children. Finding that there were so many adults on the spectrum, in fact it seemed most adults on the spectrum, who didn’t think this way just made me feel like a traitor. I remember I’d spoken once with a man I worked with about what it felt like for him, as a mulatto. He had told me that he felt that he really didn’t fit in with either group of people, blacks or whites. I felt similarly when I encountered adults who considered themselves to be on the spectrum, online.

I’ve often wondered what makes them tick. Most of the ND I’d talked with online, like most people online, were childless, and perhaps they weren’t representative of NDs in general. I think most of them were young, at least they seemed to me to be young. A great many of them, though by all means not all of them (some were quite nice), reminded me a lot of rebellious teenagers—anxious to do anything at all just to prove that they weren’t conformist. Many seemed quite bitter, and I could understand the bitterness. But I didn’t understand what seemed to me a knee jerk response to do anything and everything differently from NTs. There was an us versus them mentality that I didn’t like.

There were some who felt that their autism was more than a mere ‘special gift’, that it went beyond the normal into the paranormal. I have heard that many people who feel that they have no power over their lives will be attracted to occult type interests, and I think that this is what happens with some NDs. And some just seemed silly to me in other ways. Not that silly is necessarily a bad thing.

Perhaps this isn’t fair but I have to say it anyway. I’ve met a lot of people who seem to be anxious to make sure that autism is never seen by the public as vaccine damage. And oddly enough, it isn’t just people within the health care fields, although there seem to be less outside of the healthcare fields now than in past years. I believe that a pretty good portion of the neurodiverse, especially those who have no children, fall into this camp. I believe that there are people who are taking advantage of them, making them believe things and support things, for their own nefarious purposes. I know this sounds ironic because so many accuse biomed parents of this, of being taken in by snake oil salesmen. I don’t know if they do it for money or if they do it for pride, but I think that they, either knowingly or unknowingly, are just supporting the pharmaceutical companies. Perhaps I’m off base in saying so. As I’ve said I don’t think it’s all of them, but many of them. And some that I’ve met I’ve found to be quite reasonable and even quite impressive. But for the most part, to put it bluntly, they strike me as useful idiots. But then I suppose they would say the same of me.

Some in the ND community who have children I imagine might be the biomed parents who didn’t have success with diet, supplementation, chelation. (I think that there are some outside of the ND community as well, with children on the spectrum, who help support pharma for the same reason. At least, it’s the only reason that I can come up with for why they do it.) While I do believe that a great many children have been helped, there are those tough nuts to crack, and I think that there are many who take advantage of this (and the people whose children can’t be helped), again, in order to dissuade the public from believing that autism is iatrogenic in nature.

I hope that my suspicions aren’t true, and that it’s not the case that a large portion of the NDs are in league with pharma. If that’s so, I just really don’t see much reason to spend a lot of time thinking about them.

Elizabeth

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.


Encircled By EVIL

"A nation of people who will not use their intellect, are no better than animals and are steaks on the table by choice and consent." william cooper

"Nature gave man two ends - one to sit on and one to think with. Ever since then, man's success or failure has been dependent on the one he used most." George R. Kirkpatrick (1867-1937) Lecturer

Matthew 010:014 And whosoever shall not receive you, nor hear your words, when ye depart out of that house or city, shake off the dust of your feet.
All that is necessary for evil to triumph is for good men to do nothing! - British orator, author, and statesman Edmund Burke, 1729-1797.

"Still if you will not fight for the right when you can easily win without bloodshed, if you will not fight when your victory will be sure and not so costly, you may come to the moment when you will have to fight with all the odds against you and only a precarious chance for survival. There may be a worse case. You may have to fight when there is no chance of victory,because it is better to perish than to live as slaves." -- Winston Churchill

Wendy Frye

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.....

Twyla

I too cannot understand why biomedical treatments are considered divisive. If some people with autism are functioning well enough to feel that their main problem is society's lack of understanding, more power to them. "Self-advocates", I applaud your advocacy! But autism is a spectrum -- what works for one person isn't sufficient for another. Why all the passing judgment on hard working biomed parents? I suppose there are four reasons: difference in perspective/life experiences, inability to empathize with another’s different experiences, pharma shills masquerading as ND, and parents justifying to themselves their own reluctance to do biomed.

In addition, there are mild mannered people who say, “Gosh, can’t we just unite behind our commonalities such as advocating for better special ed services and funding of ABA?” This is certainly a good plan, except that these people seem to say that we should drop the advocacy for recognition of vaccine injury and research on biomedical causes and treatments for autism -- as if this advocacy is inherently divisive and a problem.

You don’t hear biomed parents out there chastising others for not doing biomed. You do hear biomed parents telling about their experiences and recommending resources, but not calling someone derogatory names for not doing biomed.
Differences do not need to be divisive. We are all struggling along as best we can. In my experience, biomed parents are pioneers who are devoted to their children, not deluded, desperate, etc. Biomed parents should be listened to as useful resources, not maligned.

Twyla

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.

laurie...Lombard illinois

I am a single mom too..(do not get child support as well) Talk about devistating my son was born a micro premie at 1 lb. I had insurance a million dollar a lifetime cap. Prior to my child coming home from the hospital he used up that insurance . At age 3 was diagnosed with autism but am unable to get the therapies I need to help him from doctors(insurance used up) and the school district I live in has not helped get my son therapies as well. The less the better for the budget. I have had 4 weeks of therapies from 3-7 years old... None the less they seem to not understand how to help autistic children in the classroom ie not transitioning them in the classroom giving prompts and visual aids talking whan my child is not a auditory learner.. So much that you go for others thinking you will get some help and situations are made worse.. I have no way of providing my child with what he really needs and it hurts to watch this... I support the biomedical families but one comment we have dished out everything we possible can financially for one and I feel when is everyone going to step up to the plate and be compasionate and help one another out.. we are a community and all inner connected. autism is everyones problem.. It is a epidemic most likely caused by something we did or created..( I am not talking any one person in perticular of course)we created vacines enviromental issues we screwed up our land no one wants to stand up.. they just turn their heads.. Why cant anyone help unless it is their problem untill they or someone they know are afected wether it be autism or something else.. When trying to get services for my child I thought this is not about you and I and getting my way or your budget ect... this is about a child and his future our future..

mlinn

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.

Teresa Conrick

Dear anna-

You are in a rough spot and I hope your job loss is very temporary. I'm not sure of your whole situation but there are pro-bono agencies to seek child support, especially a child with autism who needs that funding for health care.

There are Rescue Angels that are volunteers who offer their time and expertise in helping with biomed. GR, NAA, and TACA all have biomed grants and I hope that you can receive help with the food and supplements that can help your child.

Good luck and hope that you can get some much needed relief.

http://www.generationrescue.org/rescue-community.html

http://www.talkaboutcuringautism.org/fic/family-scholarship-program-faq.htm

http://www.nationalautismassociation.org/helpinghand.php

http://www.generationrescue.org/rescue-family-grant.html

jennifer

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!!!!!

bensmyson

Anna send me an email, there may be some hope, stay strong, I bet there are at least 50 people reading this that may be able to relate to your situation. It's a struggle for us all. We all would welcome sharing with you some of our resources, what little there are.

My email is bensmyson (at) gmail.com

julie

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.


Kathy Blanco

Crystal, your article hit hard on me. I have not accepted autism, even though my son is 28 years old, and daughter 21. I have not accepted it by telling others that what happened to them, was ioatragenic. I have not accepted it by going into grave debt to cure them (with some major improvements her or there on biomed), and
I have not accepted it by not vaccinating (at least the moms by real free choice)the next generation, my grandboys. I have not accepted autism, because I know it was initiated, linked, worsened by mankind. I don't accept genetics as the main problem, but I do accept predispositions. I don't accept that genetics can account for this epidemic, and I don't accept that we can sit back on our laurels and see this holocaust continue. HOWEVER, I do accept and love them, but not as is. I expect better things in the future, even at this late date. My hope is never dimmed. My love for them, enormous. If my hope goes, so does my hope for living. Iaccept, that the world wil not accept the inevitable cause of autism. I accept that the powers that be will deny this for generations, as they did with other human experiments on the masses. I accept that genetic research does not account for the environmental triggers that caused this epidemic. I accept that the least likely funded studies are those that implicate products and procedures that cause autism.

One person said, doesn't it exhaust you to be so involved in the cure, when you can just accept things as are? I told her, it exhausts me more,that people don't accept there are children being cured everday, even though it's not my children. When we finally broke down in the genetic angles, we found that they lie close to autoimmune genes. Surely, the IDSA, AAP can accept, that the immune system responds to the enviornment and their triggers?

If anyone thinks I feel less of my children, they have another thing coming. I feel more love for them then anyone will ever know. I would take a bullet for them. I would give my right arm for a cure, a magic pill, a procdure that worked. Every improvement is a miracle. The ultimate healing person is God himself, and either in this world or the next, their day will come.

Charlie

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.

anna

I'm a single mom. I have no support from anyone. My child's father does not pay child support. We get foodstamps and medicaid. I'm jobless and probably soon homeless. I admire those of you who can use biomed to help your child. I cannot afford it and so my child has no hope of recovery. Very day just gets harder and harder and I just want to run away and I'm not sure I can care for my son anymore.

bensmyson

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.

David Taylor

Strong writing, Crystal. I think your premise that "ND moms" are in it for their children is about 80% flawed. They seem to fit in with the 20% of our population that is impervious to any data that runs counter to their ideology, which they adopt as a faith in place of knowledge. You could no more "debate" with one of them as you could with "birthers."

ND is ultimately about them, not their children.


Dana Tucker

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

Amy in Idaho

The Magic Bullet works great for grinding pills too! I cannot imagine having to manage autism and cancer at the same time. We all keep moving forward because it's the right thing to do and we can't imagine doing anything less.

The community that grinds together, stays strong together.

Cathy Jameson

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

AutisticLiving.com

Great article Crystal, but now I'm dying to see a picture of you in the goggles and mask! lol. Please get a picture of that next month!

Gregg Kunkowski

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

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