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Healing Autism: “The Wires Were Crossed, and Somehow They Uncrossed”

Updated on November 18, 2012

My story of growing up with autism, and how to heal.

The quote above is a direct quote from a doctor I saw in kindergarten. But that is not the starting point of this story. It begins when I was born, in 1981, and no one could touch me; often, not even my mother. I screamed from day to night, and night to day, rarely sleeping; 1-2 hours a day total. Mom felt like I was in pain. I couldn’t keep food down, and when someone touched me, I went crazy. I was ‘floppy’, couldn’t sit unsupported, and lacked all muscle control. The doctor didn’t believe my mother that I could be as bad as she was telling him, so she took me to his office one morning, when I was 6 months old, and stayed there the entire day. At the end of the day, the doctor gave her referrals to a neurologist and a gastroenterologist. The gastro doc said I had an under-developed GI system and would grow out of it. The neurologist said something was wrong but had no idea what, and sent us to a neuro-psychiatrist. After spending time with me, this child behavior specialist told her, well, she’s either retarded, or autistic and I don’t think she’s retarded. He recommended that she put me in an institution, and“get on with your life”. Thank God my mother is one of the most stubborn and faithful people I’ve ever known. She politely told him just what to do with that idea, and asked him to help her get a hardship discharge from the Air Force, where she was a pharmacyinstructor.

At 7 months old, my mom went on antibiotics and had to stop breast-feeding me. I couldn’t handle any formulas, and wound up on a specialty formula, Nutramigen, that cost a fortune, and I only tolerated for a short time. By 13 months Mom had started trying out regular foods to see what I could handle, and then I spent several years eating chicken, rice, and green beans. However, my father didn’t agree with her and gave me regular food whenever she was away, which would cause relapses for me. What we know now, is that Celiac disease and/or gluten sensitivity run in autistic people at a higher rate than ‘normal’ people, and that by removing the gluten from my diet, she healed my body and my brain. However, we did not know this back then, and after several years, I went back to eating ‘normal’ foods. By high school, I was experiencing arthritis like symptoms, though the tests said I did not have arthritis. At 19, I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, and spent the next 12 years on many different medications, which of course led to other medications to treat the problems from the first. At age 30, I was convinced to try a gluten Free diet, and now a year later, I am on NO medications except for a low dose of thyroid treatments.

Getting back to growing up; with the diet things got some better. I had fewer meltdowns and picked up developmentally. I actually started walking at 13 months when at first they figured I’d be 2 or so. I remained extremely anti-social but smiled and played some. My father, an Air Force pharmacy tech, was transferred to Germany just before I turned 2. I was about two years old when my mother had to leave me alone with my father for a short time, and he took a belt to me, leaving a long bruise on my lower back because I was crying instead of going to sleep. He couldn’t handle me. That got us a referral to an experimental early intervention program. It was designed for children 6-8, but the clinic commander on base got them to let me in. (God’s intervention I believe) I started out only able to stay for 5 minutes, by the end I was the leader of the class, and taught the doctors that early intervention was best. They did intensive physical, speech and occupational therapy (3 hours once a week) but my mother had to learn it all and do it at home every day. At 31/2 they told my mother to put me in preschool. It took time, but after a few weeks, I was able to stay in the preschool for the day.

Before Kindergarten the school wanted me to see a neurologist again. He told my parents I must never have been autistic; that “She had some wires crossed and somehow they uncrossed.” This doctor didn’t consider that I was still autistic, just at a higher functioning level. He didn’t believe it could be cured or treated. It wasn’t until years later my mother heard about Asperger’s and other high functioning autistic disorders and realized I was and always had been autistic. My father, who couldn’t stand having an ‘abnormal’ child took to the above statement, and decided I was completely normal. My mother knew that I still needed help, and explained to my teachers and the schools how I was. In third grade, my father took my sister and me after divorcing my mother. Apparently he had the notes about autism removed from my medical records and school records. We moved several times across several states, so he had plenty of access to these records. I never knew that I had had all those problems. I always felt strange, and took to behaving ‘crazy’ and making a joke out of it in order to ‘fit-in’ better. When words came out of my mouth different then I meant them to be, I joked and convinced people I did it on purpose. I had many difficulties in school that could have been prevented with this knowledge. My mother got custody back about 3 years later, but the ‘damage’ was done to my records and my memories, and she never knew that I didn’t know about the problems. One day a teacher was doing mid-term testing, and put me in a corner with my back to the classroom, and I literally went crazy. I have never been able to handle facing walls with people behind me, and she didn’t understand. My mother had to get the principle involved to let me retake the test. I was 22 and in college when I heard about Asperger’s Syndrome, and Wow, is all I could think, that’s me! I called my mother and asked her about it (She was a nurse by then, and had much more knowledge about it.) That is when she told me the story of my early life.

Now I have decided it is time for people to hear this story. Parents of autistic children, those who are themselves autistic, doctors, nurses, teachers, and basically everyone else needs to know. Because autism has become so prevalent; everyone will deal with someone with autism at some point in time. My recommendation to parents/guardians of autistic children, remember that YOU know your child better than any doctor can; do not be afraid to try things. Many, many people have had significant improvement with their autism by doing gluten free and/or casein (milk) free diet, with a higher quality high protein intake, and high amounts of healthy fats, these are the building blocks of the brain. Often the best thing to do is to try an elimination diet. You remove almost everything from the person’s diet, milk, all grains, nuts, eggs, starches, for a few months and see how you/they are feeling/acting. Then you slowly add ONE thing back in at a time, and see if you feel/act differently. Two great sites to check out for more info are http://gapsdiet.com/GAPS_Outline.html and http://nourishedkitchen.com/what-is-the-gaps-diet/. Also the Yahoo group http://health.groups.yahoo.com/group/GAPShelp/ is very helpful. Since toxins and preservatives are so prevalent in our diet today, it may make it much harder to treat this. An organic diet or at least a diet very low in processed foods is important.

Thoughts on why I was ‘born’ autistic, when infantile autism is nearly unheard of:

· Bad Genes: Inability to filter toxins out of the body, which leads to much damage.

· The sheer multitude of vaccines my mother got in the 4 years before getting pregnant. She was in the Air Force, and they were given MANY vaccines, one was experimental, and had no choice but accept them.

· Multiple kidney infections and pneumonia and viral infections putting my mother in the hospital and on antibiotics over and over before and while she was pregnant.

· Me being on antibiotics for a month beginning at 5 days old once they realized I’d been born with a serious UTI.

· My bilirubin climbing to 20 when brain damage occurs at 21 and they didn't know if it was on its way up or down. The doctor wouldn’t listen to my mother or the nurses in the nursery and discharged me without doing a bilirubin test.

· My mother’s episode of cardiogenic shock (because her pulse was near 300 for hours) at 6 1/2 months pregnant. If she wasn't getting oxygen/blood to her brain then neither was I.

Why I think the number of people with autism has risen so much, and is still rising:

· The amounts of preservatives and other chemicals and toxins in our food, water, and homes. These things have been proven to affect the brain and cause damage.

· Vaccines. I do not know for sure if vaccines truly help stop diseases like polio and measles; I do know that the statistics showed these diseases were slowing down rapidly before the vaccines came out, and actually increased slightly for a time before dropping again once the vaccines came out. I do know that the ingredients in most vaccines are extremely scary. Here is a link to a site that lists the vaccines and what is in each of them. http://www.generationrescue.org/resources/vaccination/vaccine-ingredients-and-side-effects/

· Genetic modification of our food supply. GMOs change what God made. It doesn’t make them better; it doesn’t cut down on chemical pesticide/herbicide use. In fact, it makes it easier for companies to use more of these, since the crops are resistant to them, and now the companies use more than ever as the weeds have become resistant too. So our food is filled with these neurotoxic chemicals. Not to mention we have NO idea what these changes to the food do to their digestibility. Every independent research study I have read proves that GMO doesn’t help; in fact it harms the food supply. It goes way further; GMOs are killing livestock and are proven toxic to humans. Virtually every pregnant woman tested had RoundUp in her urine among other toxins. The only studies that show it helps, are those funded by the companies that make and own the patents to the GMO crops. So many of our crops that aren’t GMO are being contaminated everyday by GMO crops from wind, animals, and rain run-off that within a few more years, there will be NO crops left that aren’t GMO.


I hope that the information here will help you, and I can only pray that this touches at least one person’s life. If so, it was worth my time to write it. Thank you for reading, and God Bless you.


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    • Val Swabb profile image
      Author

      Val Swabb 4 years ago from South Carolina

      I can try. The main reason the two articles skip from very young to teenager is that I have very little actual memory from 'child' age, like 5-9yrs (thought to be from PTSD, the good went out with the bad). Although, doing things with my kids is actually bringing back some memories.

      I'll start jotting some things down and see where it leads. Thanks for the idea, I've been trying to think of another topic in line with my two written to do!

    • profile image

      shannonsummer 4 years ago

      Hi Val - we attended Rex together & I would love to stay in touch with you! Have you thought about writing more detailed stories about what it was like for you as a child with HFA? Your history is intriguing in itself, but to be able to hear stories about how you thought about various scenarios as a young child in school, with friends, your family... Being able to read stories from your perspective might could help me to better understand my own daughter so much better. I'd love to see what else you have to say. ~ Shannon

    • Val Swabb profile image
      Author

      Val Swabb 4 years ago from South Carolina

      Thank you. Writing has always been a big help to me, so I wanted to see if I could help others too. I'll be honest, grammar and sentence structure are a foreign language to me, so I'm very grateful for my editor, who happens to be my mom, lol!

    • NCBIer profile image

      NCBIer 4 years ago

      Thank you for sharing. I know so many on the spectrum and none of them have been able to verbalize their thoughts and feelings the way you have. They are all much younger than you, possibly that is why, and I truly appreciate your perspective.

    • Val Swabb profile image
      Author

      Val Swabb 4 years ago from South Carolina

      Thank you J, MM and justateacher!

    • justateacher profile image

      LaDena Campbell 4 years ago from Somewhere Over The Rainbow - Near Oz...

      I work with children with autism and love their uniqueness...I applaud you for overcoming your trials and embracing the fact that you are autistic..it takes a strong person who is comfortable with who they are to be able to do that...

    • profile image

      MM 4 years ago

      God Bless you, and especially your mother! Those doctors need to learn what it means to be a doctor!

    • profile image

      4 years ago

      Very stirring article, thank you for writing.