Our son, Jackson, was diagnosed with Autism Spectrum Disorder (ASD) on April 2, 2018 (on Autism Awareness Day) at just over 18 months old. I was not surprised...in fact, I was relieved. When Jackson was around 13-14 months of age I found myself googling the signs of autism in very young children...I’d pour through YouTube videos posted by parents...searching for my son in these children’s behaviors. Jackson is my third child...my third toddler. I knew something was off. He was a beautiful, happy boy...but he would not communicate with us. He’d babble, but it never seemed to carry any meaning. He had no concrete words that he used with regularity. Beyond that he wouldn’t point to things he wanted or drag us to objects he wished for us to get. He’d just cry...and tantrum. He had very repetitive, odd behaviors. He was obsessed with closing doors, drawers, and latches (he was so obsessed he’d close all the baby locks for us if we forgot!). He'd get upset if you got in the way of his sometimes obsessive routines. He also seemed to lack the normal toddler empathy. Most young toddlers, when faced with another person who is sad, will attempt to comfort that person...they may simply acknowledge the sadness, become sad themselves, or offer a toy as a means of attempting to make the person happier. Jackson seemed entirely unaware of the emotions of those around him. Once when I was very sad and crying he sat on my lap and laughed at me...I’m sure my tear stained face with mascara running down was funny to him. He also seemed to only have two emotions, happy and upset...there was no in between.
I knew something was different with my beautiful boy. When I sat in the waiting room for his 18 month appointment I stared at the long list of marks I’d made in the NO column of his MCHAT (modified checklist for autism in toddlers) it started to click that my mom intuition wasn’t wrong. As his pediatrician went over the form she suggested starting the process of doing speech and developmental assessments. She didn’t sound concerned and even suggested we could wait...but I knew this was what he needed. We pressed onward.
Jackson’s speech assessment occurred prior to his full developmental assessment as a scheduling fluke. As Jon and I sat in the speech therapists office I watched her watch Jackson with her trained eye. I tried to see him as she did and not simply as his mother. I watched him throw every toy on the ground...become upset when we would put the toy back. I saw him walk in circles around her office trying to open and close every door and drawer he could reach. I noticed how he refused to engage with her as if she didn’t exist. She asked us questions and towards the end shifted her focus and mentioned several times that she wouldn’t proceed until his developmental assessment was complete “in case he got a diagnosis.” As we left the office I looked at Jon and asked him if he heard what she wasn’t saying...he hadn’t. I knew with certainty in that moment that our little boy had autism...there wasn’t a shadow of a doubt in my mind at that moment.
The next few weeks were a flurry of phone consultations and paperwork. The day of his official assessment I was mentally ready for the outcome. We sat in the psychologists office as she went through the litany of standard tests with him. It wasn’t long before she went back to her computer and stated simply that Jackson had ASD (autism spectrum disorder). It felt as if a weight had been lifted off my shoulders...we had a diagnosis, my mom intuition had not been wrong, and now we could move forward and attack this. I glanced at my husband and realized his world seemed to be crashing down. He had not come to the same conclusion I had and instead was waiting to see what the experts said. This was his first child and he didn’t have years of parenting experience to back up what he was seeing and what would be considered “normal” in a child Jackson’s age. My heart broke for him as I then realized so many dreams we had had for our son may never come true. In all honesty I really tried not to dwell in that dark place too long because I knew it wasn’t productive...but there are still many moments that those thoughts come unbidden.
From there Jackson went through many, many more assessments...from our local regional center, Applied Behavioral Analysis provider, and even our school district. It was during this time that we realized how rare an actual medical diagnosis of ASD at his age was. As I always do I dove into the research to see why. Most of it seems to be insurance driven. As of 2017 California is one of 46 states that mandate treatment for children diagnosed with autism...but that treatment is costly (an estimated $17,000 per year and 1.4 million over the course of that child's lifetime) . Although the American Academy of Pediatrics recommends screening children beginning at 18 months, most insurance providers will not give an official diagnosis until age three...even though research as shown that early intervention services can greatly improve a child's development. As early as 1992 it was recognized that developmental trajectories were already well established by the preschool years and delays in communication could have lifetime affects on these vulnerable children. However, if these same children were intervened upon early and given a substantial "dose" of treatment (in the form of behavioral, occupational, and speech therapy among others) then by the time they reach school age they have a chance at being indistinguishable from their peers.
I'm still unsure as to why there is a huge disparity between the research in favor of early intervention and the actual diagnoses being made. Many have pointed out that even if Jackson did not receive an official diagnosis from our insurance he could still be evaluated and treated by our local regional center. While this is true, the actual therapy hours available to him stand to be much less and therefore would decrease the "dose" of helpful interventions he would be receiving. As it is now he has been approved for unlimited therapy hours by our insurance. He also receives services from the school district and the regional center. Some families that do not receive medical diagnosis from their insurance are only approved for 10 hours or less per week...they are then faced with paying for needed therapy out of pocket.
The other problem we've seen since entering this mystifying world of autism is the prevalence of families who want to ignore the warning signs. Many have asked us if we are going to get a second opinion. Our answer is a resounding no. At the end of the day neither of us care what label they give our child so long as they are giving him the treatment he so desperately needs. To fight the diagnosis and label would be to fight and perhaps lose the countless hours of therapy he gets...and that is simply counter intuitive in our book. The therapy he undergoes causes him no harm. It is all play based and usually fun for Jackson. Although they impose demands upon him, he is rewarded for complying with those demands. His life is getting easier as he is learning how to effectively communicate with those around him (via sign language as he remains non verbal). Our little boy is blossoming with all the hard work his team is doing...and we couldn't be happier.
I know that our family and friends simply want the best for us...but I assure you we are carefully and thoughtfully navigating every aspect of this journey. I feel for those families who have to struggle to obtain services for their children and I'm thankful every day that we have a team of doctors and an insurance provider who understand and agree with the overwhelming research in favor of early intervention.
At the end of the day we only want what is best for our child and our family. We have embraced this journey as best we can...some days are a struggle but we have an army behind us who are there when we fall. Thank you to those who have been there for us...your support and love is not unnoticed. We also rest firmly in our faith and know that God gave us this child because we were well equipped to help him...for that and so much more we are eternally grateful.
Love you... Paula
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