This is last picture that I took of my son before he received an official autism diagnosis.
I see a sweet and magical little boy. A boy filled with big emotions and big love. A boy who has taken our world by storm in all of the most wonderful and terrifying ways. A boy stronger and more steadfast than I ever imagined he would need to be. I see the twinkle in those big brown eyes. The joy in his smile.
I look at this picture and my eyes see the same boy that I see in pictures today. The difference is not visible to the eye. But my heart can see. My heart knows that this photo marked a change. An end, and a beginning. In this picture he was not diagnosed with autism spectrum disorder. And in every picture that came after, he was.
I took this picture in the car on our way to his diagnostic appointment. Our literal journey to diagnosis. But, our true journey to diagnosis started long before that car ride.
The first time I thought “this does not seem normal” happened during a family trip to Florida in September of 2012. At the time my son was eighteen months. Something was just off. He was not himself. He screeched constantly, and not in a normal little kid way. He seemed uncomfortable in his own skin. None of our normal tricks helped him to calm down.
Over the next 6 months I observed all of his developmental and social behaviors. I became more and more aware of his same aged peers around us. I knew that his speech was developing slower than usual. I knew that he withdrew from other kids in social settings. I understood that the shrieks and screams that he used in lieu of speech were not typical. And despite everyone’s encouragement to let him develop at his own pace and not compare him to others; I just knew in my heart that something was not right.
I went to our 2 year old check-up in May of 2014 filled with questions. Luckily, we have an amazing pediatrician who listened without judgment to all of my rational and irrational first time parent rantings. She agreed that many of his behaviors were indicative of delays. To know more, we needed to know more.
We were referred to the Birth to 3 early intervention program in Walworth County. Within a few short weeks we had our initial meeting with Birth to 3. In June 2014 we began receiving in home therapy for speech and behaviors. I felt so comforted to have people in my home to discuss all of his behaviors and symptoms. It was very validating for my “mother’s intuition”.
I remember the first time someone used the word “autism” in reference to my son. I remember it because it cut me like a thousand knives to the heart.
From that moment forward everything seemed real on a new level. The stakes were higher. The fear was greater. The need to know became paramount.
In September 2014 our Birth to 3 team advised us to complete the necessary hearing check and pediatrician referral to get on the wait list for the Waisman Center in Madison, Wisconsin. When our team suggested the appointment they told us that more than anything it was to officially rule out an autism diagnosis. We completed the hearing test and got on the waiting list for the waiting list. At that time the center was under-staffed and 6-8 months backlogged on appointment.
In December 2014 we were scheduled for an appointment in April 2015. Another 5 months seemed unbearable. I turned to a close friend who pulled strings and got us into a hospital in Iowa in February 2015. We put the date on the calendar and somehow managed to move forward through the holidays.
In January 2015 Grayson was referred to the Early Childhood Program in our school district to begin planning for his service transition at his 3rd birthday in May when Birth to 3 services would end.
On February 23rd it was time to head to the Children’s hospital in Iowa. A task that felt equal parts relieving and daunting. I looked back at my sweet little boy in the back seat and thought about all of the hopes and dreams that I had for him. I knew that we would leave the day with answers. I took a lot of deep breaths. I convinced myself that I was strong enough to handle any outcome. I had to be.
We started the day with the ASOS evaluation. My husband went into a room with my son and 2 therapist while I watched via video from the conference room. My instinct was to be in the room with my son. But, in the conference room I was surrounded by people who could answer my questions. It was the first of many “business” decisions I would make along this journey.
Before the test started my son started began shrieking. And something inside of me changed. I looked over to my friend, a speech therapist who kindly joined us for the rigorous day of testing, and said “we are leaving here with an autism diagnosis, aren’t we.” It was a statement more than a question. But either way she answered, “it is going to be a long day Jess. Let’s take it one moment at a time.”
The 7 hours of testing seemed to go on for days. During the down time we walked with Grayson to the cafeteria or to the gift shop to pick out a special treat. He thought that the hospital was a new and exciting adventure. His face beamed with a smile every time he ran up the ramp. He looked in bewilderment up at the balloons in the gift shop display.
The reality of the day meant nothing to our sweet little boy. But the reality of the day would change his life forever. It would change all of our lives forever.
At the end of the day we walked into the conference room and took our seats. My hands fidgeted in my lap as I looked around the room. The room was quiet except for the sound of my son spinning in a chair. And then from across the table someone spoke. As the words came out everything around me grew quiet and still. Frozen in the aftermath of the words that changed our lives forever.
My son has autism.
2 thoughts on “Autism Spectrum Disorder: The Road to Diagnosis.”
Hi JS, thank you for sharing your amazing experience and journey with us. You are a truly amazing mother. Stay strong ! I have a question for you. Did you put Grayson in the Early Childhood class ? If so, how did that work with his ABA? Just wondering what your perspective is. I have been told only discreet trial ABA for our daughter. Although I was hoping to have her in school, the psychologist advised against it. What are your thoughts ?
Thank you for reading! When Grayson was 3 I felt so overwhelmed by the task of picking and choosing his services, treatment, and education and finding balance. We toured a school for special needs and we we toured our public school. Since Gray is “intensive” he has 20-25 hours of ABA each week. When he was 2 and 3 we sent him to Montessori 2 days a week with an ABA tech. This was a wonderful way to ease into school and incorporate treatment. We choose mainstream 4K for this year. It has lots of ups and downs. His schedule is nearly 36 hours a week. But, the improvements this year have been work all of the struggle! He learns so much from his typical peers. And I hope they learn from him too! My husband and I did a facebook live on the “Pieces of Love Blog” page about education and our choices if you are interested in learning more about our choices! No matter what you choose, have faith that you will choose the right thing for your family and she will excel!!!! Stay strong momma!!! -JS