Every so often, I read about some herbal preparation, nutritional supplement, or alternative therapy that is supposed to cure autism, or at least lessen the severity of autistic behaviors.
At first, I thought this was complete nonsense. But then I heard about:
- how heavy metal poisoning produces autism-like behaviors;
- how some diseases or environmental factors produce autism-like behaviors;
- how some spectrum kids have major food issues, from extreme pickiness to severe allergies and intolerances;
- how therapies designed to attack the problems above reduced the autism-like behavior.
On the other hand, I know of many people who come from a long line of spectrum ancestry, who never had contact with heavy metals, or sick buildings, who have no allergies, food intolerances, or eating problems.
So, my brain went chugging along, and came up with an idea: what if there are two very different causes for Spectrum behavior?
One would be the genetic brain wiring issue, that is inherited and has been a human variant for millenia. This type is not affected by any alternative therapies, can’t be cured, and can be passed down to our kids.
The other would be non-genetic, but caused instead by some external factor. The symptoms are caused by that external factor, and may be reversible with the right therapy, or permanent. In either case, this type of autism is not genetic, and won’t be passed to one’s children.
Because the symptom list is so similar, we tend to not notice that there are two very different underlying conditions here. The group Autism Speaks is seeking a “cure” for autism, meaning for non-genetic autism. People on autism forums suggest various therapies for reducing autism symptoms, not realizing these are ineffective on genetic auties. I have seen some flame-filled arguments on who is right … but both are, since we’re dealing with two very different conditions.
So, when I now see an e-mail post extolling the benefits of chelation therapy, or a gluten-free diet, I no longer think the poster is crazy … instead, I think: that may work for your Aspie, but not for my type of Asperger’s!
well said and I agree completely. To further complicate matters, sometimes we cannot tell which type a person is. That’s why sometimes you have to try some trial and error – for example, trying a GFCF diet – to find what works for each individual.
With all due respect, I believe you have over-simplified this issue. We human beings are very very complex- just like there is no one-size-fits-all approach that works for everyone, there are no either-or cookie cutter choices, either. How can you be sure so sure there are only two causes?
I (and three of my seven kids, two of my brothers and three of my neices/nephews) are part of a LONG line of individuals on the spectrum, through my mother’s side (reported aspie-like behaviors go back at least to my great great grandmother…), so I’m assuming we have that genetic thing going here. And yet, I have found some therapies & behavioral approaches that have helped us get a handle on the destructive behaviors, to the point that some of us look “normal” in the educational world at least. Does that mean we have no genetic component to our Asperger’s? I don’t think so.
I have always been frustrated with the tendency to simplify such issues (nature, nurture, one-size educational approaches, parenting approaches, labels…..). The variables in human experience/biology/genetics/environment/relationships are incredibly complex. As much as we’d like to map out a simple cause-&-effect line, it just is not possible in MOST cases. The key is to discover what works with each individual.
It’s certainly possible to have both things going on, genetic autism and Celiac disease, for example. As you say, this makes the whole issue a lot more complicated.
But nothing will “cure” genetic autism. A NT kid with environmentally-caused autism-like symptoms may have all the symptoms removed with the proper treatment, but no matter what else is going on, a person with genetic autism will always have some autism symptoms.
Also, when I said “therapies” above, I was not referring to social skills training or other educational methods. Through these, an autie can learn what to do in a given situation, even though they are still autistic/aspie. What I was referring to were physiological treatments: chelation therapy, radical diet, herbs, homeopathy, which claim to reduce/eliminate the underlying causes of autistic behavior. These treatments may work on environmental autism, but won’t touch genetic autism.
I think it is worth it to go to a D.A.N. doctor and see what individual needs can be addressed medically.
Given the fact that Lyme Disease is in over 90% of autistic people I think it is evident enough that the gut issues are pretty common.
This also explains why the GFCF diets and the Feingold Diets work.
Check out this information on meds and diets success rates for Autism: http://www.autism.com/fam_ratingsbehaviorbiomedical.asp
Robyn, I don’t know where your statistics come from, but it is certainly not true that 90% of all people with spectrum issues have Lyme disease. Can you get me a reference from a peer-reviewed journal on this?
I am also suspicious of any website on autism with the slogan “autism is treatable.” The implication is that autism is a disease — but it isn’t, it’s a set of symptoms and behaviors that can be caused by many things, some “treatable”, some not.
The success page you linked to needs to be read carefully. For example, the most “successful” treatment listed is chelation therapy, with 74% of all patients getting better. However:
– this is based on 803 cases, not very many compared to the entire Spectrum population;
– there’s a footnote “…chelation are used selectively, where evidence indicates they are needed.” Meaning that the 803 people who got chelation therapy were pre-selected as those who would most likely benefit — NOT a random sample.
I would not stop people from trying various diets and treatments, because sometimes they are very effective. But too many people, parents especially, spend years and thousands of dollars looking for “the perfect cure”, when there may not be one for their child. Pursuing treatment after treatment can be psychologically damaging, giving a child the idea that s/he is damaged goods, and a bad person who must be fixed to be good.
Lyme-Autism Connection
http://www.lymeinducedautism.com/lymeautismconnection.html
1 out of 150 children are diagnosed Autism Spectrum Disorder. Many of these children have also been diagnosed with Lyme Disease/borrelia related complex, but most remain undiagnosed. It is estimated that up to 90% of children with autism may be also infected with Lyme Disease/Borrelia however, since testing is difficult, current research shows that 20-30% of these children harbor this bacteria. This number would represent over 150,000 children in the United States alone. Most of these children have never even been bitten by a tick. Parents have no idea how their child would have contracted this bacteria.
However, it is important to note that borrelia is not the only infection that autistic children have. Many children also have Mycoplasma, Herpes, Chlamydia, Babesia, Bartonella and many more.
In addition, this is a family disease. We intend to educate parents on their own health and how this is not just “autism” we are looking at, we are looking at a multi-faceted disorder which affects both the young, the old and all of us in-between. Although our goal started out to look at just Lyme disease and autism…we have evolved to include other such infections, therefore looking at an infection based cause to autism.
The goal of this organization is to provide education, awareness and research into an infectious based cause of autism. Yes..Lyme/borrelia is our PRIME suspect, but we realize that this is multiple infections happening on a disabled immune system and these infections can be triggered by many factors including but not limited to vaccines, chemicals/pesticides, electromagnetic frequency and a whole host of environmental factors. When we consider all options, only then will our kids be able to begin improving.
lizpf – (not sure what your real name is)
I am a parent of a child who once had full blown autism and was non verbal for 4 1/2 years and I am the leader of a large support group for the last 5 years in order to help parents and family with treatments to help their child get well.
It is not about curing but about helping and ensuring we are knowledgable as knowledge is power and I am not against ensuring all parents are informed on what can be wrong with their child.
I heard that a large majority of autistic children have seizures so I had my son receive an overnight sleep study and sure enough he had seizures – we modified the diet and after years of seizures and meds (that didnt work) he has been seizure free for a few years now.
We heard about the almost 90% with chronic Lyme Disease and we went ahead and tested him and now he is in treatment cause guess what? Yes he tested positive.
You can say it is not curable…..I am fine with your opinion but I do know you are twisting my words. I am all about information and allowing the parents to chose.
Have a great day!
Robyn (real name)
Your assertion that Robyn is your real name is a bit amusing. It is estimated that there are 56616 people in the US today named Robyn, that moniker is no more identifying than lizpf (you could run statistical analyses of the different breakdowns of that nickname based on the assumption that it is related to her full name and possibly be more likely to determine who she is)
lizpf doesn’t seem to be twisting your words at all, she’s merely stating that it’s very possible not all individuals with Autism can be “cured.”
You also say you’re all for parents being able to choose what about autisitc individuals?
A good post on that topic: http://www.journeyswithautism.com/2010/11/03/neurodiversity-self-determination-and-the-magic-pill/
Hello, (Ocelot) posted a link to your blog. What I’ve read so far is interesting. I’m not sure if there are as you say two types of Autism but there may well be and it’s certainly an area for study. I do worry about this whole notion of children being “cured” because in many cases it amounts to a over-simplification and once that pronouncement has been made there is a motivation to withdraw services possibly denying access to the resources that allowed them to appear “normal” in the first place. In general defining any way of functioning as normal is a vast oversimplification of our society. I wish you well.
For me, it’s time for our society as a whole to stop fighting about labels, and instead simply focus on providing each person access to whatever help they need to function and grow- this typically involves trial & error until the right combination of services is found for each individual. Right now, services are inaccessible to huge portions of society because of these artificial divisions of what truly is a spectrum of behaviors and thinking-styles. I say: ANYONE who is struggling to function should have access to services, whether they fit a “disability” definition or not.
You aren’t the only one to suggest that there are *2* types of autism. Doug Flutie (former football quarterback and father of a classically autistic child) also thinks there are 2 components-genetic and induced. And I’m going to add a third to the mix. Those people that have a genetic pre-disposition AND have the environmental trigger. I think this is the predominant HFA person in our society. My son is one of these. He stopped being non-verbal when we removed his exposure to mold. But he is still autistic, just higher functioning.
I don’t think you can CURE the person with autism-for most HFA’s it isn’t a disease-it is the way they are. And I have never been fond of Autism Speaks, because they focus on the small portion of people that are classically autistic, but sell on the larger spectrum.