My child has an official Autism Spectrum Disorder diagnosis: What do I do now?

Parent hand holding baby hand
Parent hand holding baby hand

My child has an official Autism Spectrum Disorder diagnosis: What do I do now?

by Kelsey W. Hurlburt
Stripes Europe

When having my daughter, I had a relatively uncomplicated labor and delivery. The first two weeks felt pretty typical. We had some issues with breastfeeding and weight gain, but a wonderful lactation consultant at our hospital helped us get through those. Our daughter was about 2 weeks old when we started to wonder what we had gotten ourselves into and what our future looked like. That’s when the screaming began. The first day my husband went back to work, our daughter screamed the entire day. Every time she fell asleep and I unlatched her to put her in her rock-n-play, she would wake up and the screaming would start again. It took hours to get her back to sleep. Over the course of the next month or so, she had random days where she would scream for seemingly no reason all … day … long.  She didn’t fit the description for colic, but something seemed off.

I started tracking her sleep and found that she was sleeping far, far less than she should have been. Once I implemented a strict nap and bedtime routine, which included darkness and no distracting stimulation, the screaming stopped. I have stuck to this strict routine the best I can for her entire life. White noise, dark room, bouncing, nursing and very exact awake times. This is what is required to ensure adequate (or at least mostly adequate) sleep. We never had the luxury of, “oh let’s just skip this nap” or “she’ll just fall asleep in the car”. She has fallen asleep in the car about five times since she hit that 6-week mark. The goal was always, and continues to be, maximize sleep as much as possible. Despite our best efforts, sleep has continued to be a challenge. She often doesn’t get as much sleep as she needs and we feel the effects for days after.  We’ve felt the effects through screaming in the car, difficulty in any indoor environment that is slightly stimulating (all indoor environments outside of our home), physical proximity or touch by other adults or children, and a myriad of other challenges. It all just felt so hard.

The next couple of years were a blur of making accommodations for our daughter to make our lives as manageable as possible, questioning why our friends were having such different parenting experiences, and trying to find non-judgmental support from people who could truly relate to what we were going through.

The first glimmer of hope came when I finally sought treatment for the anxiety I was experiencing. I’ve always been on the “more anxious than less” side of the spectrum, but shortly after my daughter’s 2nd birthday was the first time it had become unbearable. At my first MFLC appointment, my counselor said, “I’m wondering if your daughter has SPD, just based on what you’re saying.” My response was, “Um, SPD? What is that?”. Our world was changed. The signs and symptoms of Sensory Processing Disorder fit so many of the difficulties my daughter was experiencing. It explained nearly everything. I was overjoyed to have found a possible explanation and to at least have some ideas of how to move forward. We bounced around a few offices before being referred to EDIS - Early Development and Intervention Specialists - on Pulaski Barracks, and one of the EDIS providers gave me hope that there was help available for us.

Approximately eight months later, we found ourselves in the office of Dr. Damien Powell, the Developmental Pediatrician on Ramstein, discussing the possibility of our daughter having an Autism Spectrum Disorder. This felt… unlikely, but not unlikely enough to rule out an investigation. She didn’t have any of the markers seen on the M-CHAT, the standard tool used to see if toddlers have any of the signs of Autism, and so we felt she was probably not on the Spectrum. Yet, after two appointments and over six hours with Dr. Powell, we left our appointment with an official ASD diagnosis. There was no hesitation on our part or Dr. Powell’s. He was incredibly thorough and the results were very clear. Despite looking different than many of her peers with ASD, our daughter had a label. To us, this label that meant resources, support, answers, help, and a clearer if not slightly-cloudy path forward. It was a day of many emotions, but primarily relief and hope that things could get easier. It gave us hope that we could help our daughter live her happiest and most fulfilling life.

As we ventured out of his office with our new diagnosis, the overwhelming question became, “Now what?” We had our instructions from Dr. Powell to get ourselves to EFMP-Medical as quickly as we could. We had our ECHO paperwork, to provide supplemental insurance for Applied Behavior Analysis therapy (the main therapeutic intervention for children with ASD). We knew we had forms to fill out, but we felt completely overwhelmed and not sure where to find the support we were so desperately craving. EDIS has provided support beyond our wildest dreams, but our daughter was quickly approaching 3, where EDIS support stops and school support begins. Dr. Powell could not have been more helpful, but he provides this incredible service to families day in and day out; we knew he had helped us in every possible way he could. The next step was ours.

Within the first week of receiving our daughter’s diagnosis, I began keeping track of the steps I was taking to get all of her paperwork and services in order. I knew that if I was finding the process of completing paperwork and organizing services overwhelming and frustrating, I could not be alone. I was on the phone with Referral Management and Tricare International SOS multiple times a day. As I began to get used to this new diagnosis and my continued role as advocate for my daughter, my quick notes of what we were doing to get through this never-ending mountain of work turned into a resource designed to support other families who have a child diagnosed with ASD while they’re stationed in the Kaiserslautern Military Community.

With the abundance of support, information and kindness from EDIS, Dr. Powell, EFMP Family Support and ACS EFMP, I found myself having created a mostly comprehensive guide of immediate next steps after a child receives an ASD diagnosis in the Kaiserslautern Military Community.

I am elated to say that Dr. Powell on Ramstein and the Developmental Pediatrician on LRMC are now handing out this guide, “My Child was Diagnosed with ASD in the KMC… Now What?,” to every parent whose child receives a diagnosis of an ASD on the same day that their child is diagnosed. There are also service specific versions for local Air Force and Army families. It has grown and evolved dramatically since April 2018, and will continue to evolve as resources and steps change. I am so grateful for the support I've received from Ramstein and LRMC Pediatrics, the EFMP offices, and EDIS in disseminating this guide.

After recognizing the difficulty in getting connected to the most appropriate resources in our community, I also now provide resources myself, through Resources By Kelsey on Facebook. I also manage a Facebook group, “KMC Parents of Spirited Children”, that is designed to support parents who have a child who is simply “more”. More energy, more sensitive, more difficult — anyway the parent views it.

If you would like to learn more about local resources in our community that can benefit parents who have children with special needs or in regards to mental health, please feel free to check out my Facebook page. Creating and navigating resources, doing research, and providing support to people in our community is my passion. I would love to help you feel more supported. You are not alone.

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