Tuesday, July 15, 2008

Go Ahead Roll the Dice!

We were a full year into Nick’s therapy before it dawned on me that he was physically ill with Autism, not just neurologically impacted. Funny that this happened to us, we started down the diagnostic path because Nick’s ears were so filled with fluid he wasn’t hearing properly. For months we told ourselves he was speech delayed because of that, it wasn’t Autism. We saw him as medically sick. Then we moved into the world of Behavioral Therapy and ABA vs. Floortime, Speech, Occupational and Physical Therapy all the while dragging this droopy, lethargic boy along. I can’t tell you how many times I had to cajole and jolly this little boy through treatment sessions. His providers have commented that he seems disinterested or has inconsistent energy or seems irritable. I think he’s been in pain, I think he is malnutritioned and worn out from constant diarrhea. I wouldn’t want to play or learn if I felt like that either and neither would you!

The general consensus is that Autism is a Neurological Disorder. Your child is sent first for a Neuro-Psych or Developmental Evaluation and the treatment plan is most often many, many hours of Applied Behavioral Analysis (ABA). What then about all the other components of the disorder which physically manifest in many other systems and organs in the body? The majority of these are dismissed every day by practitioners as a coincidence, or in my son’s case – the result of poor diet. Almost every mother of a child on the spectrum has a sick kid, and these kids get sick in very different ways.

Some parent’s report endless, unresolving ear infections, with subsequent long and repeated courses of anti-biotics, often leading to ear tubes and adenoid removal. More describe chronic upper-respiratory infections with constant gluey mucus, unrelenting cough and asthma. As we were led to believe our son’s diarrhea, chronic since he stopped nursing at 16 months, was not connected to his PDD diagnosis. So many of these children have terrible constipation or alternate between constipation and diarrhea. Verbal ASD kids will tell you they have terrible stomach pain or reflux. You often see autistic kids in funny postures such as leaning their tummy’s against the couch. Only within the last few years have parents and doctors come to know that these kids are trying to relieve the awful pain in their belly’s. Imagining the experience of a child in pain without language is almost too difficult to face. And yet we primarily address nonverbal kid’s head-banging or funny noises with behavioral interventions! The reflux some kids experience is dismissed as an immature GI system, like colic. Eczema so distracting kids can’t sit still or sleep, diaper rash with boils that burn the skin and leave permanent scars, frightening seizure disorders or night terrors with arching backs, screaming and dissociated, all considered a coincidence. And food…we were told we had gotten into bad habits, we either nursed too long or not long enough. The food allergies so many of these kids have, we were told that they were a coincidence as well. The food intolerances or sensitivities our kids are plagued with, rarely will an allergist take them seriously. What about the viruses, bacteria, parasites that are the norm in the autism population?

Why are so many autistic kids sick? I believe, and many parents of vaccinated kids on the spectrum agree that our kids were injured by their vaccines, the high number, the ingredients, and the schedule with which they were administered. I think my son’s immune system was hit too hard, too quickly and with ingredients such as aluminum and mercury which synergistically exacerbated his decline. I think vaccines are vital to the health of the world’s children. But, as they are currently provided, many children (perhaps 1 out of 150) like Nick, will get very sick from them. We need better vaccines and we need them immediately. Right now if you vaccinate according to the current pediatric schedule you are rolling the dice with autism.

Why on earth would you treat a multi-system disorder with Behavioral Therapy? Further more, how could we expect that a child in this much discomfort sit through, let alone learn and fully participate in 30 hours a week of Behavioral therapy? Behavioral therapy is paramount to our children’s ability to get better but they won’t get much from it if they feel awful. We have to heal their bodies as we try to organize their minds. In increasing numbers, parents are healing their kids only to find the Autism diagnosis no longer is applicable.

I will not put my child through one more evaluation with a medical doctor who does not specialize in working with kids on the Autistic Spectrum. I will not take the advice of a physician about; anesthesia, dental work, GI issues, diet, medication, vision, etc unless they specialize in working with our kids! Doctors who are not fluent in the medical problems associated with autism do our kids too much harm!

If you have a child or know of a child on the Autistic Spectrum who suffers from a medical problem I did not list, please email me at davalinee@comcast.net so that my information can grow more complete. And I wish for all our sick kids healing and great health.

Thank you, Alison MacNeil

1 comment:

mind_bodyshop said...

Obstacles are those frightful things you see when you take your eyes off your goal.