Friday, November 12, 2010

Allergy Spectrum Disorder

I have been thinking a lot about where we stand in terms of the autism spectrum. I'd love to just say "hey, they say he isn't - moving on" but that is so unrealistic. I've become entrenched in awareness. Awareness of a community that is fighting for services, hoping for conclusive research, and embracing their children all the while. It's important for me to note that I know how unique our story is. Our very allergic child developed symptoms of autism and our fight to heal his immune system seemingly alleviated those symptoms. It's impossible to say what has helped the most and why. Jack's allergies were worsening and all the allergists had to say was "maybe he will outgrow them, maybe he will not, there's no way to know" and when I asked why they were getting worse their answers ranged from "there have been studies to suggest they get worse before getting better" to "we just don't know why".

When we dipped into alternative medicine the answer was further testing and tools to alleviate inflammation - tools to help his immune system balance. Tests (lab tests - at the hospital - not crystals and dead chickens if that's what you're thinking) revealed allergies to foods that the allergist said were "probably okay" to eat (hence the inflammation), pancreatic dysfunction (hence the pale and undigested food filled bowel movements - sorry!), and results that showed that Jack's thyroid was producing antibodies (attacking itself). Addressing these changed our situation but Jack's health is still a work in progress (just like the rest of us!). However, I am fully aware of the fact that not all children with symptoms of autism have immune system issues, some do and some do not. And I know lots of children who have allergies without neurological symptoms. I read a blog entry by Susan Senator, author of Making Peace with Autism and I think she explains the "debate" so well that I'm going to paste her words right here. To see the actual post (and her lovely blog) you can click here.

A New Spectrum Disorder?

It is no secret that I do not take sides in The Autism Debates. This is because I know and love so many people on both sides, and I am a Libran, so I see worthy points in both of their arguments.

Today I was thinking more about the side in favor of biomedical inteventions because I heard from a reader who was so enthusiastic about how the DAN! protocol “worked” for her son, in that it helped his functioning and communication levels. It dawned on me that I should blog what I was thinking: that there might be many conditions out there being called “autism” but that are possibly something else that just manifests as autism.

We are all aware that there are many more kids with allergies today than there used to be. Unlike autism, it is much easier to diagnose an allergy. No one can claim that the rise in allergies is about better diagnosing, because most of the time having an allergy is a clear-cut thing, where you get some adverse reaction that is pretty straightforward and unmistakable anaphylaxis or something like that.

Or so we think. What if there were something called “Allergy Spectrum Disorder,” where you have a much larger spectrum of allergic response, from sneezing at pollen all the way up to autistic-like symptoms from eating gluten? I think that this is the ASD that some parents are looking at, frankly, and not the ASD my son was born with. It is hard to ignore the scores of “success stories,” where you hear of a kid becoming so much more verbal within a few weeks of discontinuing gluten and casein. There must be some explanation for that.

I think there are three possible explanations: 1) The diet helped the child’s allergic symptoms; or 2) The child was improving on his own and had a burst of development that coincided with the use of the diet; or 3) The child has not improved much, really, but the parents are so happy and relieved to be taking action that they feel differently and see things differently, and see their child with new, positive eyes.

Any of the above are happy occurrences, when you think about it. The problem comes when one side wants to make a claim that would become a generalization for all kids. Once the biomedical side claims that all autism is is a form of environmental poisoning for all autistic kids, and that we all should act now to obliterate autism, that is when the the trouble starts. Once the autistic-rights side claims that there is no way to address autistic-like symptoms with biomedical interventions, and that we should stop trying to find a cure for autism because that is an insult to all autistics, that is when the trouble starts.

Parents must find the right balance between trying to improve/alter their child and trying to give him the skills to have his best shot at life. Society must find the right balance between trying to include and accept people with disabilities and differences, and trying to ameliorate the conditions that cause disorders (cure them). These are tall orders for a human race that is all too human and racist to begin with…

Maybe what we should be looking to understand is HSD: Human Spectrum Disorder.

2 comments:

  1. F-ing A, Juniper! This was an amazing post. Thank you for including it. Parenting is HARD, eh? But grappling with things at this depth is what it's all about. Living is hard - should we avoid it or should we confront it head on? I frankly don't want it to be easy. I'm glad to be challenged to think about these things. I'm doubly glad when the people around me are doing it, too. Keep it up, girl! Miss you - - soon, DEFINITELY.

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  2. I'm back - I just searched for this to quote for my sister in answer to a question. You're read and loved, my dear!

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