We first “met” Kathleen over the Internet because of C.R.’s interest in healthy eating. C.R. began to explore the Pickl-it web site in order to write about natural fermentation for her natural foods blog. What she found was an extraordinary story about a boy variously diagnosed with autism, schizophrenia, and pervasive developmental disorder not otherwise specified (in other words, an atypical autism spectrum disorder) and his heroic mother’s search for answers.
Kathleen’s story is extremely compelling and important reading. So we’re going to allow Kathleen to tell it (she’s a natural writer), over the course of a few interview posts.
Part 1: Heartbreak and Hope
We met our 11-month-old son for the first time on the day we adopted him. I’d like to be able to say we “held our son for the first time on the day we adopted him,” but he’d have nothing to do with us. Instead, he locked his shoulders, making it impossible to hold onto him. He screamed non-stop for nearly all four hours of the final-interviews and paperwork, his behavior degenerating into physical aggression. It was difficult to reconcile the sweet baby in the many photos that we’d received through the agency, with the child who was trying to head-butt everyone and everything.
We explained away his behavior: He was shy. We were strangers. He was in an unfamiliar environment.
In a private meeting with the agency director, she stated that “nothing of significance” was gleaned from her review of his files. The largest portion of the file dealt with our son’s first month of life: his first two weeks of neglect by his birth-mother; the second two weeks in-hospital, treated for malnourishment. His chart said he had “failure-to-thrive” low-weight and severe “diaper rash” for which he received intravenous antibiotics. The doctor’s evaluation read that “…given proper structure, care, feeding, consistent parenting and love, developmental delays will recede.”
Houseplants came with better instructions.
The adoption agency director’s advice wasn’t much more detailed. While she considered him “high risk,” because “something doesn’t seem quite right,” her “best advice” was to proceed with the adoption, having our doctors evaluate him when we got back home.
With hearts full of hope, a diaper-bag loaded of clean diapers and a fresh- tube of Nystatin, we returned home with our son. For the next four years, adoption-agency experience was repeated: it started with witnessing aberrant behavior, scrambling to discover “why,”,and consulting with professionals who passed us on to other professionals.
Doctors Are Only As Good As Labs
We asked our developmental pediatrician to be part of Matthew’s medical team. He agreed, although with numerous caveats—he knew nothing about autism, he wasn’t sure who to refer us to, and that while he liked my idea about establishing a baseline by ordering stool and blood panels, he wanted me to understand the shortfalls of the system. “I think what you’re requesting is fair. It’s right. It’s good science. But, even if we provide the lab services and collect samples, our lab doesn’t have the ability to run the tests or interpret the results.”
That was a major wake-up call for me. We learned the value of fecal and blood panels for our parrots, over 20-years ago. No avian vet would even think to begin any discussions regarding the overall health of our flock without first running those tests. Perhaps if I glued a few feathers on our son, my avian vet wouldn’t notice…
Other doctors blamed their lack of answers on my son for being “too young” and “not developed enough,” and requested that I “give it more time….come back in a year.”
Worse? The dreaded argumentum ex silentio, “he’s adopted, so we’ll never have the genetic-information that we need.”
I phoned a top-level genetic-researcher—a friend of a friend of a friend—and voiced my frustration, only to discover he shared it! He didn’t like that his field was misrepresented as having all the answers. If it was genetics-data they wanted, it was genetics-data I could provide, because we had an “open” adoption with the birth-family. As my genetics-researcher friend pointed out, the data was worthless at this point, because the field of genetics is four to ten decades away from properly using the data we had for effective diagnostics.
In other words, I was being blown-off by the doctors.
Special Needs Program
By the time our son was four years of age, he was enrolled in an early-intervention program through our public school district, a group dominated by those believing that behavioral psychology was the key for Autism Spectrum Disorders. They slipped “Autism Spectrum Disorders” into conversations—as if letting us get used to the sound of it or trying it on for size. In order to provide occupational therapy services for Matthew’s individualized educational plan, the school district needed an “official” diagnosis from a medical professional.
They paid $800 for a 6-hour evaluation, performed by a free-lance Developmental-Behavioral Pediatrician. Two hours into the evaluation, when it was time for the physical exam, (our son spent the time in the toy area), Matthew had a meltdown. For nearly 30 minutes, we watched as he kicked everything in sight, including the doctor. When I tried to intervene, I was told by the doctor to “Shush…just sit there….don’t interfere.”
After another five minutes the doctor asked, “Well, Mommy, have you seen enough yet?” Of all the non-communicative doctors and exams over the preceding three years, this one took the cake. I was tempted to join my son in acting out.
“I have no clue what you think you’re proving,” was my response. We were commanded back into his office where the doctor dictated a letter, providing a diagnosis of PDD-NOS. With a flourish, he showed us the door, “I hope this diagnosis gives you everything you think you need from your public school professionals. When your needs aren’t served, come back to us.” Professional jealousy? Pride? I didn’t have the energy or desire to be in the middle of their battle.
The special needs staff changed his diagnosis from PDD-NOS, to “Autism,” because, “that gives us a lot more money to work with.”
“But, but…” I started to protest. Wasn’t a diagnosis a, well…diagnosis? “Don’t worry. We have the authority to change the diagnosis,” said the staff. This was like most days, which felt like quicksand shifting under my feet.
More of Kathleen’s and Matthew’s story coming soon…