The Day When You Learn Your Child is Autistic – A Physician Reveals
It was a balmy afternoon in June. Not even 2 o’clock, my medical assistant should have been rooming my third patient of the afternoon. Not this day. This day was not meant to be discussing a patient’s cholesterol or blood sugars. It was not meant to be ordering labs, writing prescriptions, or making referrals.
We knew what was going to happen, we had stopped burying our heads in the proverbial sand a couple months ago. Fourteen out of Gunnar’s 26 months had been spent on this journey and it was Diagnosis Day.
June 16, 2015 would be the day that Chris and I would be told that Gunnar had autism.It started out as an innocent Google search, “when will my son speak?” Yes, I, as a physician, used Google to ask a question about my son’s development.
The last time I had seen a child in a medical setting was 5 years prior during my pediatric and emergency medicine rotations. Long ago I had pushed developmental milestones out of my head to make room for the half lives of different insulin preparations and ACLS protocols.
I could place a central line, intubate someone with respiratory failure, and knew how to treat ketoacidosis and yet I was asking Google when our son would finally start talking.
I scoured the pages that came up. Everything from blogs written by mothers with speech delayed children to the “red flags for autism” sites. I took the M-CHAT online and balked at the “high risk” result. In the following 14 months we went to pediatrician appointments, evaluations, occupational therapy, and speech therapy. We welcomed the opinions of everyone who told us he was just stubborn and taking his time. We were advised not to label him and to give him a chance.
I sidelined the occupational and speech therapists at this hospital to ask their “off the record” opinions. We talked each other into and out of an autism diagnosis so many times our heads began spinning.
The stress became too much for either Chris or me. The co-pays began adding up quickly. Chris had to take time off from work just to get him to and from therapy. I had to moonlight more to cover the co-pays. Eventually, we would have found Gunnar’s therapy not to be covered at all because he would have reached his cap on therapy visits. I spent weeks going back and forth with billing departments and insurance companies. Even as a physician who had the inside track, I was unable to secure the services my child needed. The only solution was to have him diagnosed.
There we were, walking back into the health professions building at Central Michigan University. The main corridor was full of young medical students that I had come to resent. I laughed silently to myself as they discussed who had pulled an “all-nighter” and thought about how that was my biggest concern too, a mere seven years prior. Four years of undergrad, four years of medical school, and just days away from finishing a three year residency and I was unprepared.
The evaluation had taken two days. Gunnar had undergone yet another formal speech evaluation and was subjected to neuropsychological testing. We were interviewed for hours and asked to fill out questionnaires. He was videotaped, we were videotaped. I had watched them try to bribe him with a gluten-free, dairy free cookie to complete a task and yet he was more interested in spinning in the chair. I had been worrying that I wasn’t making enough eye contact or that Chris was being too sarcastic in some of his answers.
We were shown back into the same conference room that our “interrogation” had taken place. We sat and listened as two PhD candidates and the psychologist rehashed the previous two days. They compared their findings to our answers. They discussed Gunnar’s strengths and his shortcomings. We followed along until we got to the last page where a big “X” was placed next to the diagnosis, “Autism Spectrum Disorder, ICD-9 299.00.” They told us the diagnosis much in the way that I have told families that their love one had cancer, “It’s something that may improve with appropriate therapy.” The psychologist was hopeful and explained that this was a stepping stone for Gunnar and I appreciated their advisement to stay with evidence-based therapies. Seeing it in black and white, however, was still a huge moment in our lives. Even though we knew what was going to come of the evaluation, we both still held onto the thought, “maybe it isn’t autism.”
It’s been a month or so since his official diagnosis. We are still now just organizing his new speech, occupational, and ABA therapy. I have still been on the phone with billing staff and the insurance company. Chris has been scheduling new evaluations and appointments. Gunnar’s diagnosis, however, is not the enemy that we once thought it was. His diagnosis has opened doors and increased therapy coverage. It has helped us understand an aspect of who Gunnar is and understand why he may act the way he does at times. While we do not allow it to define Gunnar, autism is now a part of our family and we welcome the journey.
This article was featured in Issue 38 – Keeping ASD Kids Healthy