My friend and I were recently discussing how hard the journey was to get our kids the right diagnosis. I thought I would share with you how I made the journey to discovering my son has autism in case anything sounds familiar to you. Every kid is different, so there is a different journey for everyone — but high-functioning autism has some very specific and similar trials. I know that my friend and I sure felt like our boys were nearly twins. The higher-functioning the individual, the later the diagnosis tends to happen… So don’t be too hard on yourself if your child is a little older when diagnosed.
The Journey Begins
The first step in our journey was to address my son’s anxiety. My son struggles with it a LOT. It would have nearly been comical if it weren’t so heartbreaking. He had to know where I was at all times — I had to tell him before I went into the backyard, the garage, or anywhere else he couldn’t see me. He couldn’t let me have a shower without an interruption. If he couldn’t find me or was left alone too long, he would freak out and nearly panic.
He would beg me not to leave the house, and he really struggled to leave the house himself as he got older. He had to know what we were doing and when we would be back. The only time he seemed to really be at peace was when the whole family was home together in the same room. We took him to a child psychologist who spent six months teaching me to be a better mother. It was informative but didn’t help my child since that wasn’t the problem.
Journey Through Preschool
Our next step in the journey was to try to get him some socialization. I started him in preschool a little early — he wasn’t quite three. But my friend was the teacher, and I loved her style. I knew he would have a blast and, as an only child, he needed the friend time. But when we went to school, he wouldn’t stay unless he was on my lap. So I stayed for the first 15-20 minutes the first week, and eventually weaned him to trust his environment.
One wonderful thing about preschool was that his language improved dramatically. We had worried because he wasn’t talking much. But being around other kids seemed to help his language explode. He made his first friend, who is still his best friend to this day. They are both on the spectrum and have a lot in common. In preschool, that meant a lot of fighting for the same toys — but they also learned a lot from each other.
Endless Energy and Picky Eating
Every kid is different, but my little guy was a ball of energy. He would be going all day long and then struggle to sleep at night. Now I know why, but back then it was so frustrating. How could he not be able to sleep? He never stopped moving! I took him to his pediatrician because every kid needs sleep. He suggested we give him low doses of melatonin at night. It totally did the trick! I felt bad about dosing my kid, but without it he literally could not sleep. I still have to give him melatonin at night. Since he is on the spectrum, small amounts of medicine have the same impact as regular doses for the rest of us.
Another major part of the journey was food. My son also really struggled with any new foods. He had a limited number of foods he would eat, and there was nothing you could do to get him to eat other things. He would literally starve before eating something he felt was dangerous for him. Now I know he struggled with the textures of foods. It really helped to get a spin toothbrush to brush his teeth. The vibration meant we didn’t have to brush as long, and his teeth got cleaner. The vibrations also helped reduce his sensitivity a little.
My son could not take no for an answer, and he could not wait for even a second for something he wanted. That was a big trial in my life. He also struggled with change of any kind. If we were going to the store for something, but they were out, it was literally the end of the world. I would be left heading to as many stores as needed to find that item or face a major meltdown. He couldn’t handle any change of any kind. If we had to change plans for any reason, the world would end.
He also struggled with shopping in general. He seemed to get overwhelmed with the noise and busy atmosphere. Even all the things on the shelves were overwhelming to him. There were meltdowns in the aisles that were beyond epic. Old ladies would stop and watch. Moms would offer unsolicited advice on how to help him wherever we went. I finally stopped shopping with him. Instead, I ordered off Amazon or did the grocery pickup that many stores offer. My neighbors thought I had a shopping problem because there was always a box at my door. What they didn’t know was that I didn’t dare risk the item being out of stock.
My son also LOVED certain things. I mean, he had an all-consuming passion. First it was for trains. He watched Thomas the Train and almost exclusively Thomas. We watched Chuggington sometimes, but Thomas was the favorite. We played with trains all day. It was his only toy that he would even touch on a regular basis. So he had all of them by the time he had his 5th birthday because all his doting aunts and uncles helped beef up his collection.
Then his all-consuming passion shifted to Cars after watching the Cars movie… And then we repeated the same pattern. We watched Cars the movie over and over again. When each movie came out, we added it to our routine. It was so fun watching him so in love. He wanted to watch cars in every situation; he loved watching them in car washes and seeing their engines. As he has grown older, this love has lead to a lot of great educational opportunities. We have built a four-cylinder model engine, a V-8, and a flax-six. It is so enjoyable seeing this side of him. But it’s a fundamental aspect of autism, the hyperfocus.
Our journey got more intense when he started school. Things got harder. It was kindergarten, but he wanted to stay home more and more often. When school was hard, he completely melted down the moment he walked in the door. I’m talking raging, uncontrollable mess kind of meltdowns — the kind it takes hours to soothe and often were triggered by the smallest things.
Asking him to pick up his backpack would trigger it. Asking him to do anything would trigger it. It was SO stressful! I was always on pins and needles trying not to set him off. My therapist told me that he saved his worst behavior for me because I was his safe space. I felt honored at first, and it gave me greater patience. But I was devastated that my sweet little boy was having so much stress in his young life. It motivated me to find a real solution.
Inspirational Turning Point
I really didn’t know what to do for him, so I prayed for guidance. The Lord told me to volunteer at my son’s school. I thought it would be so that he could see me daily and have less stress because of it. But instead my eyes were opened. It was a real turning point in our journey.
In college I studied people: how people interact and what makes them tick. In my studies, I learned that people tend to gravitate toward other people who are like them — i.e., crafters find friends who are crafters. As I volunteered in the lunchroom, I watched who my son made friends with, and I took a major step forward in the journey.
You know what I found? Each kid he seemed to really like had been diagnosed with autism. I knew because I knew their mothers and, since mothers tend to share, they had told me about it. I talked to my mom about my suspicions and she told me that she had felt he had autism for a long time, but that she didn’t feel that I would be open to her observations or she would have told me sooner. Having a little brother on the spectrum and a nephew on the spectrum, I was really surprised by this. How had I not seen it?
Getting that diagnosis was a mixed bag of emotions. But truly, I was so thankful. He began to improve right away. As soon as I got him into ABA (Applied Behavior Analysis) therapy, it was a matter of weeks before he could handle a short wait that he couldn’t handle before. Then he was able to handle being told no and changing plans. Things have just been getting better and better since then. He has mastered so many skills! I am really in love with ABA.
Sometimes the greatest challenge in this journey is seeing that what you need is to check for autism. It won’t be always be like my story. But if you see yourself and your child in any of this, it is worth it to seek some professional advice. The key to overcoming the struggles of autism and unleashing your child’s superpowers is an early diagnosis. A lot of insurance companies cut off ABA therapy at age nine, so the sooner you have answers, the better for your mental health and the better for your child.
Just remember the diagnosis is the end of one journey and the beginning of another. But now you will have answers and a clear path to help your kiddo thrive.
Abby is capable and caring. She is learning more about Autism and parenthood every day. And even though she is the first to admit she makes a lot of mistakes, she is so grateful to be on this journey. She comes from a family with many autistic members. She invites us to join her, as she shares her adventures. She wishes to emphasize that Autism is a difference not a defect. If you or a family member have autism, Abby wants you to know that this isn't a bad thing. And you or your loved one are not sick or broken. Together we will teach the world this new language.