The Road to Autism Spectrum Disorder Diagnosis
Avery is my second of two boys. He was born via planned c-section because my firstborn suffered from shoulder dystopia (his shoulder got stuck) during natural childbirth. He was 9 lbs, 12 oz! Thankfully, he did not suffer from any immediate or long-term injuries.
My pregnancy and delivery of Avery were normal (a question I am asked on most intake forms for Avery). I had lost weight before this pregnancy and worked hard to maintain a healthy diet and weight gain. Luckily, my cravings with Avery were not for the same sweets and juices that I had with my firstborn. Avery was born 7lbs 12oz.
Bringing Avery home, we quickly learned he was more “fussy” than we had experienced with our firstborn. Similar to my sister and I, I had siblings who would be the complete opposite. My firstborn is my cautious, curious, “old soul” of a child who prefers indoor activities and a solid routine. His language and vocabulary developed typically, if not advanced, with one of his first words being ‘garage.’ He is currently 9 years old and finds math easy and enjoyable. He says he dislikes reading but he is a strong reader.
Avery is my carefree, affectionate, think-outside-of-the-box, charmer of a boy who loves to be outdoors riding swings and scooters, jumping on trampolines, and swimming in the pool (or any water activity, really). He also maintains a tight circle of friends through the three shows he has been watching for years.
Jumping back to Avery’s infancy, I believe his fussiness was because he was uncomfortable. I breastfed him for a couple of months until I had mastitis and had to introduce formula. We faced GERD and sleep challenges and, ultimately connected with a Speech Pathologist who specialized in pediatric feeding and swallowing. She introduced us to Nutramigen, a hypoallergenic lactose-free formula clinically shown to manage colic due to cow’s milk allergy. I didn’t know it then, but this was the beginning of what would become Avery’s dairy and gluten-free diet.
Avery developed typically, meeting all milestones through age 1. He spoke some single words and two-word phrases. I have memories of him saying “away” when his father and I got close for a hug or kiss and I am so grateful to have a video clip of him saying “I go” in his little voice while pulling an oversized women’s handbag along the floor with him. Comparative to his brother, his language was developing slower, but our pediatrician assured us this was normal, he had enough words for his age, and more would come with time.
Our deepened concerns about Avery began in the Fall of 2019. There is not a single event that I can point to, to mark the change, but this is when my Avery began to slip away. He was no longer gaining words and ultimately stopped speaking altogether. He also lost eye contact, focus, and attention. In subsequent medical evaluations, I was asked about observance of behavior that would point to silent seizures, but I had not seen any. So far, Avery has had two EEGs and two MRIs, both reported normal.
In the fall, our family lost my uncle after a courageous 18-month battle with pancreatic cancer. My uncle was a major fixture in my family. He was a 6’ 4 loud, funny, life-of-the-party, executive chef who always seemed to be in a good mood, always made you feel like you were special, was always ready to lend a helping hand, and was always cooking up something delicous! My mother and my uncle were very close, and she was one of his primary caregivers during this time. She was also Avery’s primary caregiver while my husband and I worked. Although he was so young, Avery went through this trauma alongside my mother. When my uncle passed away in September of 2019, everyone was devastated. I can’t help but wonder if all of this could have impacted my baby as it had the rest of my family.
During the fall, Avery had two ear infections and a respiratory illness for which he was prescribed antibiotics and a steroid. He also had his second MMR vaccine. We had a measles outbreak in our community the year before so he had his first MMR vaccination ahead of the New York state-recommended schedule. Of course, our doctors and public health officials had recommended this course of action and it made sense to me at that time. I will admit that at the time, I did not know to question or challenge any of these things. I was uneducated when it came to many medical topics, and I felt that questions or concerns were met with judgment. I can’t help but wonder if this sequence of foreign entities introduced into his body somehow created a perfect storm of reactions in Avery’s body that led to his regression.
In January 2020, we started Avery in a part-time preschool program. Like his brother, we were lucky enough to have family care for him from birth (while we worked), and we wanted him to start a structured program to learn more skills and socialize with kids his age. So, we signed him up for a morning program 2/3 days a week. Placing him in a typical preschool program quickly made it obvious that Avery was behaving and learning differently than his peers. After several weeks, the staff politely suggested we seek an alternate program for him. Avery got kicked out of school!
Then, March 2020 hit and the world shut down. It wasn’t until that summer that I was able to have Avery’s hearing tested (for the first time). His hearing was normal at birth, but perhaps his lack of expressive language and inability to follow simple commands had to do with a hearing problem. His hearing was normal. Avery was evaluated on the Spring of 2021 just before his third birthday and was diagnosed with Autism Spectrum Disorder, Mixed Development Disorder, and Language Regression. I’ll write about his diagnosis and all the things that followed over time.
And, here we are. Avery is almost 6. It hasn’t been easy, but we have found a rhythm. We have a lifetime of living ahead of us. However, as Avery’s mom today, I can say that I have learned a lot about myself and the world we live in. I have deepened my patience, persistence, and resilience. I try not to sweat the small stuff, rather celebrate the small wins, and try to laugh often.
Thank you for taking the time to read a bit about me and my life as Avery’s mom.