Our Autism Diagnosis Story
Hey friends! In this blog I want to share with you our autism diagnosis story. I pray it is an encouragement for you in taking steps of faith forward to helping your child.
My husband, Daniel, and I were proud and thankful parents now having 2 children from God to raise up in a Christ-centered home. I remember our youngest, Josiah, being a happy baby that smiled and laughed a lot. He seemed to have such a fun personality at a young age. We had some really great moments with him.
In early infancy, Josiah started to become sick frequently. He battled with reflux, respiratory conditions including various viruses and infections. He was put on steroids and antibiotics constantly by his pediatricians. He ultimately had tubes put in his ears after recurring ear infections. Josiah also had difficulty sleeping. We used to drive him around in the car to get him to fall asleep and sometimes this took up to an hour! To help your child overcome sleep issues, check out my new ebook here!
Josiah was on track and even ahead on developmental milestones such as rolling over, sitting, crawling, pulling up, standing, and walking. Around 15 months, I started to notice a social withdrawal from him. He did not show as much eye contact, he did not seek affection like he used to, and he did not play with toys like other children. He wouldn’t even play on playgrounds. He’d rather be playing in the dirt by just picking up handful after handful and watching it drop through his fingers to the ground. He just seemed to be in his own world, uninterested in any interaction with me or anyone else. He began to spiral into some sensory sensitivities like being sensitive to someone or something touching his hair or ears. It was difficult to wash or brush his hair. He put his hands over his ears for loud noises. He would become overwhelmed in crowded places.
Josiah then began to develop sensory seeking behaviors. These included jumping up and down as well as jumping off of furniture repetitively. He exhibited other repetitive behaviors. He always had to carry stick-like objects in his hands. He loved to pick up multiple pencils, straws, sticks, and then drop them over and over again for hours. He started waving his hand across his face and wiggle his fingers in front of his face. He would also look at objects to the side of his face instead of straight on.
Josiah started showing OCD behaviors in his everyday life, such as lining up his toys in a certain order and a certain position. If anyone altered this or he couldn’t keep his toys upright, he would become very upset and throw himself to the floor in a tantrum.
He also had regression in his eating habits and became a very picky eater. It was to the point that Josiah would only eat crackers or muffins. That is it! Josiah had begun to say, “Mama’ and “Dada”, then lost all language skills. He even stopped babbling.
One morning I was home recovering from the flu. Daniel and the kids had left the house so I could get some rest. I started a show called “Parenthood.” There is a character on the show with Aspberger’s. Because of this character’s social challenges, sensory sensitivities, repetitive behaviors and outbursts, I had my first thought that Josiah may have autism. I voiced these concerns to my mom and she did not seem concerned at the time. I was afraid to bring it up to Daniel at first because I was not sure how he’d respond. I voiced my concern of his developmental delays with his pediatrician. I was told that Josiah was fine as boys just progress slower than girls. I wanted to just brush off my concerns, but they stayed with me.
At 18 mos, Josiah attended my mom’s daycare part time while Daniel and I worked. Since I had voiced my concerns earlier, my mom started to pay more attention to Josiah and noticed he was struggling socially, he swas still not speaking and he would not focus on any tasks presented in the classroom. She came to me and told me that she too was now concerned about Josiah’s developmental delays. My mom gave me information about a program called “Babies Can’t Wait”. This is a program through the state of Georgia that provides therapeutic assistance and resources for children with developmental delays from infancy up to 3 years old.
I moved forward contacting them to help me help my son. We were able to start with a Developmental Specialist right away. Soon after we began this treatment, I requested that he get diagnosed through MCHAT for autism. This is a free toddler screening tool to assess the risk of autism in a child who has not yet been diagnosed. You can access it here.
His report came back that it was highly likely that he had autism. There were some areas that determined he was developmentally behind comparable to a 4 month old!
After the screening, we were advised to get on a waitlist to get an official diagnosis. All our local organizations that provided this had a year long waiting period! What?? How could we wait that long? I couldn’t believe this was such an area of need in our local community. I have learned this is a problem all over the nation. Our developmental specialist gave us a tip that the Marcus Autism Center in Atlanta was a shorter wait and made the younger kids a priority. I applied for the wait list and our initial evaluation was scheduled 2 months later! Woohoo!
After a 2 day evaluation, it was determined that Josiah had Autism Spectrum Disorder. The diagnosing psychologist instructed us to start Josiah in speech therapy, occupational therapy, feeding therapy, and Applied Behavioral Analysis Therapy, aka ABA.
Leaving, my husband and I were overwhelmed. The 2 hour drive home was pretty quiet. As we processed everything, we felt devastated and began to grieve the life we wanted. The life we hoped for. Two happy and thriving children. We were entering a life that was controlled by Josiah’s challenges.
I struggled with the Lord as to why He would choose someone so inadequate to be the best mom for Josiah. I thought surely Josiah deserved a better mom than me. In my sorrow, the Lord revealed that He created me to be a fighter. The Lord told me to fight for Josiah. About a year later, the Lord let me know that Josiah was going to overcome his challenges of autism. I made a decision that day to trust the Lord, pray for His guidance every day, wait on Him and rely on His strength to persevere until His promise was fulfilled. I committed to educating myself on ways I could help my son. I would take these things to prayer. Sometimes, the Lord would give me a yes or no, and other times I did not feel like I got an answer so I walked in faith through open doors. Those doors did not always bring the progress I hoped for, but it brought the experience I needed to help other families one day. And although we still have some work to do, my son is close to recovering from all of his challenges. The Lord has now called me to helping others and this is what my blogs and services and products is all about!
If you would like more information, check out my blog “Understanding the Diagnostic Criteria for Autism Spectrum Disorder.”
