Treating a Child with Autism; who’s got it ‘Right’ and who’s got it ‘Left’?

Bah, Humbug...

Ya know, the more autism blogs I read, the more I am struck by this seemingly impossible to bridge gap between those parents that 'treat' their children with autism and those that proclaim they do not. And for some of those that proclaim that they do not, even the thought of wanting to treat a child with autism is something reprehensible, disgusting even, as it means that 'the parent is not happy with the child they got', that the parent 'is trying to fix the child', that the parent 'is trying to change the child into something he or she is not'.

On the surface, it looks like such a 'simple' debate. It's the 'Neurodiversity folks' versus the 'fixers and curers', it's the 'accepters' versus the 'blamers'. But looking at the debate at a deeper level, it is so much more complex than that.

For full disclosure, I firmly stand in the 'biomedical treatments' camp, and the reason for my support is very basic, the biomedical treatments we have decided to pursue have saved my son's life. Period. And no, I am not talking about saving his life from 'autism's clutches', I am talking about saving his life as in he is still walking around on this planet, he is still breathing, finally eating, growing, learning, and giving the rest of human kind a chance to experience a truly unique, gentle and loving soul. If I hadn't decided to take control of my son's situation myself, he would have ended up either in the hospital due to severe malnutrition and other medical illnesses, or he would have ended up in a psych ward heavily medicated. And he was only 6 years old at the time I decided to take control.

The fact that these treatments saved his life of course makes me anything but objective, but does not make me afraid to question some of the more controversial treatments promoted within the biomed community, or the motives of some players within the DAN community. It also doesn't leave me blind to the fact that the research supporting biomed treatments is woefully inadequate (although I refuse to believe that the tens of thousands of parents that are using biomedical treatments to help their children are all suffering from a mass hysteria induced grand delusion, or from an inability or unwillingness to deal with the fact that their child has a life long difability). And it also doesn't give me less appreciation and admiration for those that firmly stand in the neurodiversity camp (I do want to make a distinction between this group and the subgroup within the neurodiversity community that claims that 'all biomed is hocus pocus/voodoo science' - they are not one and the same) and widely proclaim their peace of mind, their acceptance and their optimism in the face of dealing with the day to day challenges of raising a child with autism. I greatly admire (and sometimes envy) these folks, as I know that I have waaaays to go on the road to acceptance and peace of mind.

Here's the thing though. While I don't discount that there are innate differences in how our kiddos are wired and that these differences have a genetic origin (I have by now come to realize that the extended family is dotted with a colorful collection of 'different wirings'), what I absolutely do not understand is why, in the eyes of some, it is so wrong to try to help my child function to the best of his ability with this 'different wiring' in a world that is not (yet?) equipped for dealing with his differences?

Why is it, that because I have chosen biomedical treatments as the primary mode to achieve that goal as opposed to ABA, Floor Time, RDI or medication, that I am 'accused' of trying to fix my child, or trying to cure my child's autism? Maybe it is all semantics, and once again proof that you got to be careful with how you refer to things, but it frustrates me to no end that I cannot seem to get across that I am not trying to cure my child's autism or trying to 'fix' him (he is NOT broken!!).

What I AM doing however, is actively treating my son's underlying legit medical problems that, in his case, contribute significantly to the more difficult aspects of being autistic. Medical illnesses that have been largely ignored by his previous doctors. And as far as I'm concerned, the fact that, as we are getting his medical problems under control, he is starting to PRESENT (in the eyes of his neurotypical environment) as less 'autistic' does not mean that he is getting cured or 'recovering' from autism.
Heck no, he is recovering from all underlying medical issues he has had to deal with, probably from birth (how would you feel/behave if you have been feeling really sick and lousy for as long as you can remember, hmm?). His neurological wiring will always be different, but now at least, as his health is improving and he is becoming more able to cope with having to live and function in the world that is designed for neurotypicals, he has a chance at achieving his full potential.

Let's take a closer look at all this brouhaha around the perception that those of us that pursue biomed want to make our kids 'less autistic', or want to change their 'natural state of being'. It's really too ridiculous for words.
Don't those that poohpooh biomedical treatments for this reason, use treatments too to make their kiddos 'less autistic'? What's the difference between addressing a child's constant crying and toe walking using ABA or addressing an autistic child's aggressive and self injurous behaviors through medication, and addressing same behaviors in same child with a removal of dairy and gluten from the diet and finding that the crying, toe walking, aggressive and self-injurous behaviors were related to pain and other discomfort the child was experiencing but wasn't able to express appropriately? I find it insane that pursuing 'the diet' is seen as fixing my child and/or making him less autistic, or as a desire to change his 'natural state of being', while it is apparently perfectly OK to change that same 'natural state of being' using ABA or psychopharmacological drugs.

And really folks, all those that proclaim that they accept their autistic child's 'natural state of being', who are you kidding?? Really?? You are telling me that you are OK with your child destroying the house, hitting or biting others or himself, throwing major league tantrums on a daily basis, not being able to make it from the kitchen door to the car because of great difficulties in handling transitions, or spending the entire day in their own world stimming away, or whose only form of communication is a piercing scream or an endless repeating of TV commercials or soundbites from videos, because that is your autistic child's 'natural state of being'???

Poppycock. I don't accept these behaviors in my neurotypical child, and I certainly won't accept them in my autistic one. While I am certainly more sensitive to the fact that in most cases my autistic child doesn't behave the way he does because 'he wants to' or 'because he's testing the limits', but because he truly can't help it, I am not willing to accept these behaviors as his 'natural state of being'. But because I chose to address those behaviors through biomedical treatments, I am trying to 'fix' my child???

So why the venom that is being directed at the biomed-ers (and yes, I know that the other 'side' gets as much venom thrown at them from 'our' side - and this makes me just as frustrated and sad)? What truly underlies this almost obsessive need from some of those in the 'biomed is hocus pocus/voodoo science' camp to discredit anything we are trying to achieve?

To put things in perspective, I certainly don't want to move toward a situation where every parent whose child is diagnosed with autism gets handed a referral to a 'chelation' clinic. Chelation is something that, in the right circumstances and under proper and knowledgeable medical guidance, can greatly improve the quality of life of some kids (both autistic and neurotypical - after all, let's not lose sight of the fact that chelation is a well-known and well-accepted treatment modality for lead poisoning, drug overdoses and Wilson's Disease, just to name a few). Chelation however should never, ever become a 'let's do this for every autistic kiddo' treatment. Just like chemotherapy or radiation should never (have?) become the 'let's do this for every cancer patient' treatment. Or that ABA or Verbal Behavior or RDI should (have?) become a 'let's do this for every autistic kiddo' treatment. The child's needs, first and foremost, regardless of his or her autism, should always dictate the treatment modalities that are being pursued.

But what would be so wrong with a situation where a parent of a child that has been diagnosed with autism gets handed an information package that describes the various biomedical approaches that may, but not necessarily will, help their child? Or to provide the parent with basic information regarding diet and the impact that dietary changes could have, and some tips on how to get started? To provide the parents with at least a few pointers about where they could go for further information, so said parent can make an informed choice? Right now, most parents are not even given that basic right of choice as they are not even aware of any of the biomed stuff until they stumble across it by accident. And then they have a looong, uphill battle to fight, and will be subjected to much ridicule and accusations along the way . For God's sake, like it isn't hard enough already!

What are those that proclaim 'biomed is hocus pocus/voodoo science' so afraid of? That some of this stuff may actual work and may significantly improve the child's quality of life, and that thereby yes, there is more that can be done to help an autistic child beyond making sure the child gets the allotted ABA time administered by the right therapist? That yes, in quite a few cases, significant 'relief' can be achieved by something as 'simple' as cleaning up your child's diet and giving them specific vitamins, minerals and amino acids? Or that, oh my gosh, there may actually be something to the theories that this crazy, polluted, fucked up world we live in is actually poisoning our kids? Well folks, get your heads out of your asses, uh, the sand, and grow up!!

Or is it the idea of actually taking control of your child's well-being that is so scary, as opposed to relying on a medical doctor that spends maybe 10-15 minutes once a year with your child, but who does have that 'all knowing', 'all powerful' M.D behind their name? I don't discount the fact that almost every parent of an autistic child has consulted numerous specialists and experts, and that the time these doctors spend with your child is significantly more than 10-15 minutes, but still, these doctors are not all knowing, and you can't rely on them to always have your child's best interest at heart. They are still people, they still make mistakes, they still may not be up on the latest research, or they could plain old be in it for the money (or the kickbacks and perks that the big pharma is so eager to provide).
That doesn't mean that you won't find the same problems within the community of medical practitioners that refer to themselves as DAN doctors. There too, as in any medical specialty, are quacks and profiteers that are out to make an easy buck. Fact is, when you have a child with a chronic illness or permanent difability, you HAVE to take control and become an 'informed customer'. Regardless of what treatment modalities you decide to pursue.

I also don't discount the fact that there is, as of yet, not enough independent, peer reviewed published scientific literature (I make the distinction here between the availability of published scientific literature and the availability of scientific evidence; they are NOT one and the same) that supports the effectiveness of the various biomed treatments. But maybe that is because the naysayers keep looking for evidence that these biomed treatments help treat autism. Once again, most of us biomed-ers are not treating autism, we are treating our children's underlying medical problems!! Medical problems for which there IS independent, peer reviewed published scientific literature as to what helps and what does not. An example here - we now know that my spectrum kiddo most likely has Celiac's disease (one of many medical problems that he is dealing with, in addition to his autism). A well-documented treatment for Celiac's disease is a diet that is completely devoid of gluten. If my child were neurotypical with suspected Celiac's disease, no doctor in their right mind would have told me that 'there is nothing to the fact that diet can have an impact on your child's well being'. But this is exactly what I was told when I brought the possibility of Celiac's and a gluten intolerance up for my autistic kiddo. Going gluten-free has made a world of difference for him - yes, it has cleared up quite a few of those symptoms that are described in the literature as 'typical' for Celiac's. But low and behold, it has cleared up quite a few of his autistic symptoms too (and no, this is not a mommy's need to see change where there is none, or the result of the placebo effect of a parent feeling more empowered as she is doing something and therefore becoming more accepting of her child's autistic behaviors).

Unfortunately for my kiddo, the fact that none of his previous, well meaning, but more 'thinking inside the box' doctors picked up on the potential for Celiac's has left him with a lot of digestive damage and a severely impaired nutritional status, and going gluten free was just the beginning of our journey into 'diet land'. Casein had to go as well - and to be honest, an inability to digest cow dairy that likely has been present since birth, is most likely what started my son's digestive issues and subsequent regressions. Again, his previous, well meaning doctors did not pick up on the fact that my son's extreme colic may actually have been a sign of a serious allergy, as opposed to 'well, some babies just have colic, they eventually grow out of it'.

Between the havoc that an inability to properly digest cow dairy and gluten have wreaked on his digestive system, overall metabolism, and immune system, we are now in a situation that he is not able (and may never be able again) to digest the majority of the foods he used to eat (we currently have a total of 17 foods, in addition to all things cow dairy and gluten that we MUST avoid). And sadly, if I hadn't found the support and understanding of a doctor that is willing to think outside of the box and see my son's medical problems separate from his autism diagnosis, my kiddo would still have been suffering as much as he did before we discovered the extent of his digestive issues. And this goes for the various other medical problems we are dealing with too. - which are all diagnosable and treatable. And once again, if my child were neurotypical, nobody would think it 'wrong' that I would seek treatment for these illnesses. But because my child is autistic, treating these illnesses is 'fixing his autism'? Bullock.

I do not discount the fact that going down the path of biomed interventions, of which in my honest opinion, a good hard look at your kiddo's diet should be your starting point before you do anything else, is not an easy road to take. The thought of having to overhaul my kiddo's diet, to have to take out those foods that he would actually eat without a huge fight, scared me shitless. But that was MY issue, MY fear, MY worry about the additional work it would mean for ME on top of everything else. For the sake of my child, I had to overcome those feelings, and after getting a good kick in the you-know-what from other parents who were in the same boat as I, I did overcome those feelings, rolled up my sleeves and got to work.

Nobody in their right mind would continue to let a diabetic child eat those foods that are bad for them, so why is revising my autistic child's diet to take out those foods that are bad for him looked at so differently? Why am I fixing my child because I choose to administer at home (without the constant supervision of an all knowing MD - the nerve, I admit) custom vitamin, mineral, amino acids and other supplements to my child to address certain deficiencies - deficiencies that were detected by diagnostic testing, I should add? Why am I fixing my child because I choose, using natural detoxifying agents and treatments of which the benefits are well known from medical traditions much older than our western one, to address his lead, arsenic and mercury poisoning? Once again, if my child didn't have the autism diagnosis, no doctor in their right mind would let my child walk around with the levels of heavy metals he's currently got in his body. And I can't emphasize this enough - I am not addressing his heavy metal load to cure or fix his autism. I am doing this because these heavy metals are making him physically ill and damaging his neurological systems, and as a result impact his quality of life and stop him from reaching his full potential (we're all familiar, or should be, with the fact that lead, arsenic and mercury are neurotoxins, right??).

What really gets to me is the presumption that those of us that pursue biomed must be desperate people, not able to cope with our child's 'life long sentence', and willing to do ANYTHING to have that 'perfect child that somebody or something took away from us'. Wake up people. While I am sure that there are folks that are being 'lured' into biomed under the false pretense that the child can be cured, I am sure just as many have been 'lured' into the use of psychophindependentc agents (that were not designed for the autism population, and almost never properly tested in the age group for which they are prescribed - talking about the lack of indpendent, peer reviewed, published literature eh?) under that same pretense.

Most of us that pursue biomed really do do our homework, and spend countless hours researching, reading, questioning, calling medical professionals for advice, seeking out experiences of other parents, etc. And shame on us if we didn't. And shame on you if you allowed your child to be put on drugs, or to be enrolled in an ABA program, just because it was recommended by an 'expert' without doing your research.

When I started on this journey about 2 years ago, I would never have thought I would have ended up where we are now. When we started, I was firmly convinced that 'all' we were going to do was dietary changes. That was it. No vitamins, no amino acids, no probiotics, enzymes or yeast treatments, no immune system support, no detoxification. I was firmly convinced that MY kid had none of the issues that warranted these kinds of 'ridiculous' treatments, that all that was needed was a good clean up of his diet.

Boy, was I wrong, I've learned so much since. And that's it - you truly need to learn about these interventions, you need to take the time to understand, to put the pieces of the puzzle together, to not expect results overnight, to not jump on the next treatment that comes along, to take it one step at a time. But isn't that true for all the other interventions that ARE routinely being recommended for our kids?

I know that there are several of you that have tried dietary interventions or other biomed interventions and found that it just didn't work for your kiddos. I commend those in that situation for giving this a try, and I am sorry that it didn't make a difference. I encourage you though to keep searching, to keep learning, to keep questing, until you find something that does help in improving your child's quality of life, either within the biomed framework or elsewhere. And if you've already found it, congratulations.

For those of you however who 'dish' biomed, because you 'just don't believe that it works', or because 'there just isn't any evidence', or because you 'can't imagine taking the foods that your child loves away', or who say that 'the diet is just not for me because it'stoo expensive or takes too much time, or is too inconvenient' - stop your belly-aching. If you just don'twant to pursue any of it, fine, just say so. But then shut up, and stop attacking those of us that do.

If you're 'on the fence', doubtful or scared, fine, just say so. We were scared and doubtful too when we started (and we still freak out at least once a day). But we were more scared of what would happen if we didn't. Ask questions, challenge, and don't take any of it at face value. Gather your information, and then make an informed decision. The emphasis is on making an informed decision. Don't fall for the empty rhetoric on either side of the 'Great Divide'.

Sure, I know that some of you will question my motivation for going biomed. 'Is she truly doing this to address her son's medical issues, of because she so desperately wants a normal child so HER life can become easier?' Let me tell you, if you think that I am spending on outrageous amount of money on my son's foods and supplements, spending countless hours in the grocery store reading every friggin' label, cooking all foods that are being consumed by my children from scratch, spending hours doing medical research and questioning my sons' doctors, having medical bills coming out of my ears, making sure that my sons take all their vitamins and supplements, and finding myself in the position of having to understand and adjust on a daily basis my son's messed up biochemistry (while constantly keeping a very close eye on his little brother's metabolism) so MY life can become easier, then you truly ARE clueless.

What I want, and what any parent wants, is for my child to be happy, healthy, and able to reach his full potential. That is his birthright! Somewhere along the way, something went off track in him being able to achieve that birthright. It is my job as his parent to help him get back on track. And that job is tough enough without having to defend or hide the fact that we've decided to follow a track that is off the beaten path. I know that some of you feel uncomfortable being in the presence of those that do biomed, as we make you 'feel guilty that you may not be doing enough' (a feeling that you maybe should take a good, hard look at, hmm?). Well, we are getting just as uncomfortable about constantly having to explain and defend that 'no, we are not conducting horrible experiments on our kids or treating them as little lab rats', or 'wanting to exorcise the autism out of our kids'.

Really, deep down, we are all trying to do the same thing, which is to take care of our kids the best we can. Where we fundamentally differ, I think, is in the believe that not all symptoms and behaviors our kiddos display are attributable to their autism, but are there because the kiddo has underlying medical illnesses that in some, not yet well understand fashion, contribute to their autistic behaviors. Why not explore this, why not understand this better to see if that may be the case for your child? Really, what does anybody have to lose in trialing whether or not removing cow dairy, gluten or soy, or whether adding certain supplements, makes a difference?
And if you're not comfortable doing this on your own, by all means, contact that nutritionist or allergist or whomever you feel can guide you.

I for one am much more comfortable with the current treatment path I am pursuing for my son than I will ever be (and I may be forced to eat those words in a few years when the hormone shit storm starts to hit) with psychopharmacological drugs or behavioral retraining.
And so is my now almost 8-year old son..