On July 5th, 2016, I looked at our son, Liam, who had just been born, and couldn’t believe that my broken body had created something so perfect. If you’re new here, that’s because at age twenty-one, I was diagnosed with Graves’ Disease and have since undergone six surgeries to manage this illness.
However, I remember slowly feeling like I was watching the bricks falling, one by one, as Liam grew.
This is the story of how Liam was diagnosed with Autism.
Starting with the smallest details, I noticed our son didn’t play with his toys in the usual ways a child might. Instead of seeing him imagining up different play scenes, I would instead often find his toys perfectly lined up next to each other.
Later, as he grew, I noticed he was wise beyond his years and was intensely focused on building Lego kits for hours at a time. By age eight, he was already easily and quickly building 18+ Lego kits entirely by himself. He loves following maps and directions and always enjoyed helping me build patio furniture and other random household items I would bring home.
I also noticed that he appeared to be clumsier than other children. While he walked at an appropriate age, he often fell or bumped into things. He couldn’t seem to do things other children could do, like ride a regular bike or stay upright on a scooter. We have since gotten him a three-wheel bike to accommodate these limitations.
Then we progressed to eating issues. Originally, Doctors called it a “pediatric feeding disorder,” which was later changed to ARFID as he grew older and saw more specialists.
I noticed that Liam almost always choked or threw up with food. He had severe sensory issues with smells, tastes, and textures. We started seeing an Occupational Therapist who did extensive, years-long food exposure therapy with him. It was a fascinating process, and we both learned so much. He went from having about five safe foods to probably fifty now. That isn’t to say that it is all smooth sailing, though. We still have nights where even trying a new brand of spaghetti makes him throw up because the texture is different from what he is used to, and I have to make a second supper that he can tolerate.
Avoidant/Restrictive Food Intake Disorder (ARFID) is a mental health disorder that typically presents through three main characteristics, which can occur individually or in combination.
Sensory Sensitivity: Individuals with ARFID may experience extreme sensitivity to the taste, texture, smell, colour, or temperature of certain foods. These sensitivities can make eating uncomfortable or distressing, often resulting in a very limited selection of foods they feel safe eating. Trying unfamiliar foods can cause significant anxiety, gagging, or an overwhelming feeling of discomfort.
Fear of Aversive Consequences: Some individuals develop intense anxiety or fear surrounding eating because they worry about negative experiences such as choking, vomiting, stomach pain, or allergic reactions. These fears may develop following a previous unpleasant or frightening experience with food. As a result, they may begin avoiding certain foods or restricting how much they eat to prevent these feared outcomes.
Low Interest in Eating: Other individuals with ARFID may have very little interest in food or eating. They may rarely feel hungry, have difficulty recognizing their body's hunger signals, or view eating as an unpleasant or time-consuming chore rather than something enjoyable. This lack of interest can lead to inadequate food intake, nutritional deficiencies, and difficulty maintaining healthy growth or weight.
It is important to understand that ARFID is not simply picky eating or a behavioural choice. It is a recognized eating disorder that can significantly affect a person's physical health, emotional well-being, and everyday life. Individuals with ARFID often experience genuine distress surrounding food, and their eating difficulties are not caused by concerns about body weight or appearance.
He also has extremely strict eating rules. For example, if a spoon has a water mark on it from the dishwasher, he will search the entire drawer looking for one he deems clean enough for him to use. Once, I accidentally scooped rice with a spoon that had touched another food, and he saw a speck of sauce on his rice that he was expecting to be perfectly white. He threw up his entire dinner while trying to eat it. He wouldn’t eat rice for months after that because he was so worried about it happening again. It really is interesting to watch how his brain works when something like that wouldn’t bother the average person, but for him, it was extremely difficult.
His sensory issues didn’t end with food. He always preferred quiet rooms with dimmed lights, and he didn’t do well in crowds, immediately becoming overstimulated and overwhelmed. He also has extreme germ phobia and will change his clothing an excessive amount of times and sanitize or wash his hands upwards of 30+ times per day.
I think it was on his third birthday that I really started quietly wondering to myself about autism when I watched him he covering his ears as we were singing Happy Birthday to him.
Liam has always liked certain clothing; pajama's, to be specific. Almost every photo of him from birth to his current age of ten shows him in the same type of pajama's. He loves them so much that when Carter's discontinued making them, I drove hours and hours all around Edmonton and the surrounding areas, collecting every pair that I could to build a collection of all future sizes so that he would never run out. I tried putting him in a button-up shirt for a photo once, and he had a full hysterical meltdown. I didn’t know at the time, but he was clearly having sensory issues. Unfortunately, I didn’t know the full picture back then like I do now. He also developed into wanting the same pair of shoes. We buy the exact same pair, year after year, just the next size up, like clockwork.
Then, when he was in kindergarten, Liam was flagged for speech issues. As he is my only child, I just assumed his cute little mispronunciations were adorable and that he would outgrow them. Frog was “fwog.” Umbrella was “umbwella” … you get the idea. We started seeing a speech therapist and poured about twenty thousand dollars out of pocket into therapy with little to no results, and my mama intuition just knew there was something more going on.
The Occupational Therapist who did his food exposure therapy agreed and said something that changed our lives. She said, “I am not allowed to diagnose him with this, but I really think you need to see a neurologist. I believe Liam has Apraxia.”
I had never heard of this and immediately went home to research. The OT ended up being correct and the neurologist we saw agreed with that diagnosis.
Apraxia is a neurological condition that affects a person’s ability to plan and coordinate voluntary movements, even though their muscles are physically capable of performing those movements. Essentially, the brain knows what it wants to do, but has difficulty organizing and sending the correct signals to make it happen. This is most evident in things like trying to ride in bike in Liam's case.
It also affects Liam's ability to speak clearly and consistently. A child with apraxia typically knows what they want to say, but their brain has difficulty planning and coordinating the precise movements of the lips, tongue, and jaw needed to produce speech. This can make it challenging to pronounce words correctly, form sentences, or communicate effectively. As his mother, I can probably understand 90% of what he says, but strangers can probably only understand 70% and I am often reiterating what he is trying to say to them.
Liam has always been put into various club and activities throughout his childhood. I noticed that he never really clicked with other kids and I would often find him sitting alone at pick up time. It broke my heart.
As many of you know, we started homeschooling in grade two because Liam also has a mild heart condition and asthma. He just wasn’t thriving in a typical public school setting and seeing him sitting alone at recess was crushing. I didn’t want him to have his spirit crushed by the inevitable bullying that I knew would follow so our homeschool journey began. He is doing so much better with one-on-one attention and carefully curating the children he plays with… who are often neurotypical like himself.
(Shoutout to Liam's Dad Brett for hustling every day at his company Subzero Mechanical to make this arrangement a reality. When you support a little local company like ours… Liam is the one who really benefits!)
I was encouraged to seek a professional opinion after meeting another homeschooling mom who has a child on the spectrum after mentioning that I thought Liam had Asperger's. She agreed that our kids shared a lot of similar traits and told me to call a place called Khan Communications in Edmonton. They were the biggest blessing along this journey. The entire team is full of absolute angels and helped us so much during the entire process. If you want to learn about one of the tools that they use to diagnose autism, please look up the ADOS test.
It was a long, intensive process and we received a twenty-nine page, in depth report back officially diagnosing Liam with autism, which in Liam's case is formally known as Asperger's Syndrome.
People with Asperger’s often experience differences in how they communicate, interact socially, process information, and understand the world around them. They may have difficulty interpreting facial expressions, body language, sarcasm, or social cues that other people recognize naturally. Conversations can sometimes be challenging, particularly when understanding unwritten social rules, recognizing when someone is joking, or knowing how to respond in certain social situations.
The Speech Language Pathologist that assessed Liam at Khan let me know that she loved that he often said unintentionally funny things that someone his age wouldn’t usually say because he’s young but full of wisdom. He sometimes talks like a senior citizen and has the memory of an elephant so I enjoyed that she appreciated his wit and humour.
I wanted to write this post because I have always been an open book about my own personal medical challenges and I have heard countless times that people have learned so much about Graves’ Disease from my blog. My hope is that someone will find this blog one day and will learn something about Asperger's, ARFID, or Apraxia. The more that people that are aware of these conditions, the easier and more understood the lives of kids like Liam will be going forward.
I used to have a co-worked with Asperger's and he was one of the nicest, sweetest humans I have ever had the pleasure of knowing and if people say the same about my son in the way that I admired my co-worker, then I will be a happy Mom.
I titled this post “I Knew It, I Knew You” not only because Liam loves the song, but because I feel like I knew in my soul that he is special and I am meant to be his mother. I saw things early on that I knew others would think were absurd to even think about but I pushed and pushed to get him in front of every specialist that I could as he grew. I would walk to the end of the earth to ensure that he gets the care he needs.
The psychologist who did our assessment said that she understood if all the information she provided was overwhelming but I felt the complete opposite. I felt relieved and validated. I finally put all the puzzle pieces together after years of searching to get to where we are today because he needed people to understand him and I think I accomplished that. We now comprehend how his brain works to guide him through life and make accommodations as needed.
People have asked “So, what’s next?” and the answer is… not much. There is nothing “wrong” with our son. There is nothing to fix. He just sees and experiences the world in a different way than some people and that can be a beautiful blessing too.
With an official diagnosis we are now able to access several more government funded programs that focus on autism and I am excited to explore those options. It will also come in handy later down the line in university and when he needs to hold employment if he needs some special accommodations.
As you can imagine, managing some of his autistic behaviors can sometimes be overwhelming but I know in my heart that I am meant for the job.
I know Liam will do amazing things in his life and I can’t wait to see where he goes.
"To Infinity… and Beyond!"
