The positive side of autism?

Today was our babysitter's last day. She was AJ's aid during the school year and she has been coming over in the afternoons, picking the kids up from summer camp and watching them 3 days a week while I edit my wedding videos on the computer. She is getting her special ed certification and she is a lovely 22 year old, brilliant teacher/friend. She is already married and building a house at age 22 which I find baffling but don't harp on.

Anyway...today, her last day, she told me that she read a book recently about the positive side of autism. Of course I have already forgotten the name of the book and the author (memory lapse due to either nursing or past large doses of Zoloft before my anxiety disorder magically disappeared by itself with my most recent pregnancy). Sorry, I digress. So she told me that in this book the author visited different autism families and asked them what was positive about autism and at first they were shocked or confused by the question. Then they answered with things like, now they look at the small achievements instead of expecting large ones.

I didn't think that seemed like such a positive thing although I have a feeling that there are probably some amazing positive stories in this book and I probably need to get it. So at that point of the conversation with our babysitter I was thinking about what I think about autism. I don't really think it is positive really but it is hard to sit on that conclusion since my little girl is so completely amazing and happens to have autism. I used to think that the autism made her amazing. Now I think that her being amazing has nothing to do with the autism and that the autism actually makes it difficult for her to express herself properly. I have another way of explaining this that goes a little below the service. Here is the disclaimer...if you are squeamish about grief, stop here.

Let me start with the phrase, "All Souls Are Equal." I first heard this phrase when I was doing a photo montage honoring an amazing psychiatrist who ran the Center For Autism and Related Disabilities, and had passed away. For the montage, his former employees and his freinds sent in little notes and blurbs and recordings of what they found special about him.
I had no idea what his friend was talking about when she made this whole recording about how she loved that he taught that all souls are equal. I had no idea what on earth she was talking about and I didn't really care because I just needed to get the photo montage done and looking good and it wasn't my job at that point to try and digest the meaning of peoples sentiments.

And I didn't think of it again until a couple of months after my sister's funeral. My sister had an open casket funeral and I remember when I went to look at her I was shocked that she wasn't in there. Her body was there looking alarmingly strange, but after my first glimpse I found myself looking frantically around the room and in the air around her for her soul. I have never understood what a soul was before but now I knew exactly what it was and I suddenly knew that her body there in the casket was a house for her soul. Now her body couldn't house her soul and her soul did not have a way to express itself and I wondered where it was now. Perhaps her soul is in heaven, whatever that may be. What I know more than ever is that in this lifetime I will never know where her soul is...although I have a feeling that it isn't that far away. In fact I remember feeling an odd pang of relief when I saw that she wasn't in there because she wasn't going to be buried. Her body was, but her soul, the part that I loved, was somewhere else and was not going into the ground.

So how does this relate to autism? Since I now realized that our bodies are simply a house for our soul, I also realized that our bodies fail us sometimes and make it more difficult for our souls to express themselves. When our bodies are no longer able to express our souls, our souls have to leave our bodies. So yes, all souls are equal even though not all bodies are equal. It was a life-changing moment the evening a month or so after my sister's funeral that I remembered that phrase and realized exactly what they were talking about.

I think that autism makes it a bit harder for AJ's soul to express herself. BUT there is something positive in this because she is able to express herself in many different ways that she would not have done without the autism. Maybe I am reaching here, and we do "reach" for the sake of love and happiness. But she is able to live in an amazing world that seems to me, from the outside, to be a beautiful one. I have learned a new level of patience that I didn't know existed in me. I remember reading that Madonna said that very same thing, now that she was a parent, yes, Madonna the singer. And I remember that weird tidbit of information because when I read it i was like, yes, me too, wow. I digress again. Sorry. So the positive side of autism. In conclusion, I don't think that autism is who my little girl is. I think it is a complicated maze that mixes up how she expresses herself. Sometimes it is wonderful and amazing, sometimes it is heartbreaking and down right frustrating for everyone. Do I think she would be even more amazing if her autism wasn't in the way? Well, yes I do. I think that autism "got" her because she is such a sensitive brilliant little girl. She was one of these babies who spoke at 10 months and was singing full songs at 12 months. She was a genius child, then autism struck and it was like the book, "Flowers For Algernon." Her skills just started to back track on themselves. At first, at 14 months she could work the CD player like a teenager, finding her favorite song, memorizing the number of it and then dancing to it. Then at age 2 she suddenly couldn't do it anymore and I remember both she and I were shocked and scared. That is when I called the pediatrician and the autism journey really began.

So did I answer this question OK? Is there a positive side to autism? I think my final answer is, yes. But I do reach for it, and I do hold on to it...cling on to it. What I DO know is that I have an incredible child who happens to have autism. That, my friends, I am certain about.

What causes regressive autism, and my response to the St. Pete Times article about vaccines and atusim

Subject: My response to the St. Pete Times' front page article about vaccines, and how this relates (or not) to autism ...



Begin forwarded message:


Date: November 24, 2008 10:26:54 PM EST
To: greene@sptimes.com
Subject: In response to your article about vaccines...from an autism mom.

Hi Lisa,
I enjoyed your thorough and fair article about vaccines and as an autism mom I wanted to offer up an explanation of how vaccines truly figure into autism.

The most current view is that vaccines do not cause autism. I believe, after researching for the past 4 years, that autism is triggered by numerous environmental factors, in children who are genetically predisposed. Vaccines are a part of the trigger, not a single cause.

One example of how to explain how vaccines factor into austims is the, "Princess Diana Tragedy Example." It states that you can say, "If only she was wearing her seat belt, if only she weren't being chased by the media, if only the driver had not been drinking"....if only one of these factors had been different, her fate may have been different.

With autism I could say, "If only I had not eaten a can of tuna fish a week during my pregnancy, if only I had not let her have 5 vaccines in one day, if only I had declined the flu vaccine with thimerasol in it, if only I had not microwaved her formula in plastic bottles, then maybe the genetic predisposition would not have been triggered and she would not have had lost skills at age 2, then regressed more and more with every vaccine."

This theory is based on the fact that our kids who are genetically predisposed to autism are more sensitive to environmental progress/toxins. They can't rid the body of toxins like most of us can and it ends up building up in their system and turning off switches in their brain (that hopefully can be turned on again some day as research continues.)

You can say a similar thing for many diseases and disorders. For example, breast cancer is believed to be triggered by carcinogens in those genetically predisposed. I think that environmental toxins are out of hand and we just turn a blind eye to them because it is so terribly inconvenient to do otherwise. We like eating fast food packed with preservatives and we like microwaving our food in inexpensive plastic. We can't bother with being worried about BPA's or MSG or bothering with whatever the new "scare tactic" is. Not only is it inconvenient to change our lifestyle habits, but how do we decipher which "scare tactic" has merit and which is a passing media trend that has simply received over-exposure.

A part of being an autism mom is trying to decipher just this. We have to pull out what we learned in statistics class in college and from biology about studies and credibility. Suddenly instead of just mom's we have to be scientists, researchers, nurses, doctors for our kids and it is overwhelming. Then we deal with "professionals" not listening to what we have discovered and what we are saying because we don't have the medical degree to back it up. We are a new generation of Lorenzo's Oil parents, which I have to say, sucks.

But...my little girl with autism has improved so much that after a diagnosis of severe autism only two years ago, she is now in a typical kindergarten at a highly regarded private school, where she is one of the best students in her class. My studies and theories put into practice have worked on my child. Now I watch as it unfolds and hope that small treatments such as diet modifications; feeding her fresh organic veggies, fruit and meat, and also taking gluten, casein and soy out of her diet, eventually become recommended by pediatricians. We give my daughter vitamins, probiotics, baths in epsom salts and B12 shots. None of this stuff is proven or standard, but it has worked for her, especially the B12.

So to get back to vaccines...when my daughter's pediatrician told me that it is rare to have severe side effects from vaccines, that they don't cause autism, that there is not enough thimerasol in the flu vaccine to be of concern, I trusted him. I know that he was not knowingly giving me wrong information. But my child was showing some mild signs of autism at that point and I should have been advised to wait on the vaccines until her immune system was stronger and to stay away from thimerasol and any environmental toxins...from food preservatives to bug spray.


A Short Rant:
Unfortunately today it still is not standard for pediatricians to advise the treatment of keeping preservatives and toxins out of autism children's systems while working on detoxifying and strengthening their immune systems. This theory is often dismissed as "not proven." For example, many pediatricians and even specialists will not say to concerned parents, 'I don't know if it the GFCF diet works or not because I am not a parent or doctor who has tried it." Instead the doctor will say, "These treatments are not proven," which implies some sort of knowledge on their part, where there actually is none. Parents end up getting cheated out of precious early intervention treatment time until they finally look it up and find the information themselves on the internet or through networking with other autism parents.

As an autism mom, like many others out there, I do not believe that vaccines simply cause autism. I do believe that if a child is genetically predisposed to it, that vaccines contribute greatly to triggering or worsening autism symptoms in overloaded, under-protected little systems.