I think the only autism “cure” we haven’t tried with Alex is swimming with the dolphins. We, of course, would’ve tried it if we lived anywhere near Florida and hadn’t seen that recent news broadcast about the toddler who was attacked by an alligator. As it is, we’ve given every doctor-approved method, activity, medicine, and diet that we’ve researched a chance. The outcome always being the same: Alex stays the same.
The first big treatment we tried was acupuncture. There was a little boy in Alex’s preschool class whose parents were trying it and he was actually starting to talk! So we found a practioner and began going there once a week. Of course, this meant leaving the other children home alone.
By this time our eldest daughter, Kathleen, was an unusually mature 13-year-old. All of our other children became mature very early–Kathleen, Alan, Jimmy, and even Rose, despite her being two years Alex’s junior. That will happen when you have a sibling with a disability. She bypassed Alex developmentally when she was three and he was five. I have to say that that is still one of the most upsetting events I’ve witnessed as a mother.
I digress. Early every Saturday morning, my husband Paul, and I would head out with Alex, leaving the other children home alone with boxes of colorful, sugared cereals and hours of Saturday morning cartoons. It was a 30-40 minute drive each way. In central New Jersey twenty-five years ago acupuncturists were not found on every corner. We actually enjoyed it though. It gave us an excuse to go on date, kind of. Alex sat in the back, and since he had virtually no language and barely paid us any heed, unless he wanted a snack, it was as though my husband and I were alone in the car.
At the first appointment, the acupuncturist looked at Alex’s fingernails and pronounced that there was a blockage of a particular meridian. His chi wasn’t flowing correctly, I guess. She thought the treatments might help him, so we decided to go for it. On subsequent visits, upon arrival we’d be ushered into a small room where the doctor would gently insert a very fine needle in the center of his forehead, right at the hairline. He never flinched. Then we went back to the waiting area where Alex could play with puzzles, blocks, and books. After 45 minutes or so, we went back into the little room where the doctor removed the needle. Sometimes, not every time, a single drop of blood would form at the site.
We kept at these “dates” for approximately six months. I felt that if we hadn’t seen something in that time, nothing was going to happen. I hoped fervently for something, anything: any change or improvement, no matter how small. We never noticed any difference, so we stopped going. And I missed my Saturday morning dates with Paul.
A few years later we had a similar experience when we began taking Alex to a kinesiologist. It was basically the same scenario: Saturday mornings, long drives, the other children home alone. The kinesiology doctor was also a chiropractor, and he made some spinal adjustments (something like that). He talked to us about diet and other things. He instructed us on one thing that was new to us and probably one of the only things that actually produced results: “patterning.”
Every night, and in the mornings if we could fit it in, we would have Alex lie down on his back on a mat on the floor and do the “patterning.” I would hold his wrists and my husband would hold his ankles and we would alternately raise and lower his arms and legs in a pattern to simulate swinging your arms when walking–left arm and right leg, right arm and left leg–something Alex didn’t do up until that time.His arms usually just hung straight down at his sides. Alex didn’t seem to mind the exercise at all. We did these sessions for some months and finally he began swinging his arms in a normal way when he walked. It would have been interesting to see if Alex made any other progress with this doctor, but we’ll never know because we ended up moving to Vermont for personal and financial reasons.
Shortly after our move, we saw an ad for a woman who was running a therapeutic horseback riding program for autistic and other developmentally delayed children. As I have always loved horses, this was a no-brainer for me! We immediately signed up. I walked beside the horse along with the person leading the animal and two helpers as Alex rode. He seemed to enjoy this; he often smiled and sometimes laughed a little. The riding was meant somehow to regulate his body movements and make him more aware of his body. Not sure any of that happened. We did it for two summers. In Vermont, summers are pretty short, though. Again, it provided time for Paul and I to get away together, practically alone, for a couple of hours.
In 2005 when we learned of the “DAN! protocol” (“Defeat Autism Now”), we began searching for a doctor who could help us. The “DAN! protocol” was centered around the ideas that autism is caused by a combination of lowered immune responses, external toxins such as vaccines and heavy metals, and problems caused by food allergies. The doctor went through a number of tests (blood, urine, stool, hair) and then according to those results, suggested a regimen of various supplements, vitamins and cutting various foods from his diet: sugar, grains, gluten, dairy, and so on. We found a “DAN!” doctor only an hour and 45 minutes away! (Hooray–another round of autism-sanctioned dates!) The appointments we set up were on weekdays, when the other children were in school. I was really excited about this one; I thought we were going to finally see some results and maybe even cure the autism! Although we kept up with all the testing and the supplements and dietary changes for about a year, eventually the doctor told us–actually he had the receptionist tell us over the phone–not to come back because there was nothing else he could do for Alex. Up until this point, we had been the ones deciding when to call it quits. This time, it was a medical doctor telling us that, basically, our son was too autistic.
(Note: After writing this, I wanted to see if there were any updates on Defeat Autism Now and discovered that it was closed down in 2011. If interested, here is the article about it: http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/dan/overview.html )
We’ve tried auditory integration therapy (AIT), sensory integration techniques, Reiki, craniosacral therapy, massage and craniosacral together, chelation, immunoglobin injections, secretin, drumming, physical and occupational therapies–all with either no results or very limited benefits. We cut out all sugar from Alex’s diet for 6 months with no result. Another time we went gluten free–difficult and costly to do–again, with no change in either his health or his behavior. All that did was starve the poor boy.
Each time we got our hopes up only to be let down. After awhile it became easier not to hope too much. Still, we continued to search, always on the alert for discoveries of new treatments and therapies. Friends and relatives were always asking, “Did you see that segment about autism on 60 Minutes last night?” and sending me articles on autism and various treatments. For the most part, Alex truly hasn’t changed much since he was 4 years old and at this point, I’m thinking he never will. I accept that this is the way he is and that he will most likely stay this way. But, hey, with new advances in science and technology continually, maybe someone will invent an electronic device of some kind that flashes lights or emits frequencies that will be able to change his brainwaves and make him not autistic anymore. Who knows? We haven’t given up hope for a cure, but right now our priority is helping him be happy and comfortable just the way he is.