Our Family’s Fearless Journey to Embrace Autism

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“It’s OK he can’t quite feed himself, he is only 2.”  I kept telling myself over and over again. 

Then I noticed the calendar: it was June. He would be 3 in August.  Maybe it wasn’t OK that he couldn’t use a spoon effectively and we were still spoon-feeding him his applesauce and yogurt.  Thus began a search for answers which ended with an Autism diagnosis.

Our Child as a Baby

During my second child’s first 2 years, we moved across the country twice.  With my focus elsewhere most days, I can’t say I was tuned in to watching their childhood milestones.  He crawled and sat on his own on the same day, the week before our first move at 9 months.  That’s a little late on the sitting but some kids are later than others, no worries.

He started walking right before the doctor was going to send him for Early Intervention.  When he started talking, he said words but it wasn’t quite a conversation.  He refused to touch his smash cake and get messy at his first birthday party.  His sister fed him the cake with a spoon and he liked that.  Some kids are different, not a big deal.

But when I had the spoon-feeding revelation when life had finally settled down after the second move in a year and with a little brother arriving soon, I began to get concerned.  Like most things, I went to the internet and started searching for milestone checklists.  Easter Seals has one you can fill out and will grade it to see if you should talk to your doctor.

Our results said exactly that, it was worth discussing.  There were some areas where he excelled but other areas where there was a mild concern.  The doctor was fairly dismissive, so we looked for a different doctor.  I didn’t know what we might be dealing with but I did know early intervention was best so I wanted to investigate quickly.

Something Wasn’t Right

Our new pediatrician was much more helpful and was willing to write referrals for any concern I had.  Our first stop was for Occupational Therapy (OT).  With what appeared to be fine motor delays, this is where we started.  After the initial assessment, I heard a brand new term, Sensory Processing Disorder. 

Sensory Processing Disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. It’s currently not formally recognized as an independent diagnosis, but it’s often a part of Autism and related disorders.  We had an amazing OT therapist who worked well with our child but also taught me about what she was doing so we could make changes at home to help him.

Since Sensory Processing Disorder is not recognized as a medical disorder (commonly a symptom of something else), we kept looking for answers.  The first specialist we saw agreed with some of our concerns, but wouldn’t commit to a diagnosis.  She reluctantly agreed to perform the age-appropriate ADOS test for Autism with him.

My child had turned 3 by now and we had missed the window to utilize Early Intervention services and were referred to our local school district for services.  While they were clearly lacking in some areas, he was also showing great strength in other areas which canceled each other out on paper.  This meant he didn’t qualify for assistance with them.  I was very frustrated.

Finding a Good Autism Doctor

The more research I did at home, the more I was convinced that my child was on the Autism Spectrum.  I never heard the results of the first ADOS test because he passed, meaning they weren’t autistic by the testing metrics.  I was not convinced, and even in the testing scenarios, I could see how he wasn’t quite normal.  Now my challenge was finding a doctor who would listen and see what I was seeing.

Thanks to two referrals for the same doctor from unrelated sources, we got a second opinion.  I knew things would be different when she met us in the waiting room and approached our child who was lying on the floor with his blanket and thumb in his mouth: she met him where he was, and didn’t expect us to follow her immediately to the other room.  She was able to confirm what I had already figured: our child was on the Autism Spectrum.

She told us that she knew immediately that she had to adapt the test when he didn’t say “dinosaur” to identify the object she was showing him in the assessment, but he correctly labeled it, “stegosaurus”.  He tested clearly on the Autism spectrum when she used the test for the next older age group! This led to the gifted diagnosis she gave him.  She also told us he had ADHD which was not something I expected.

Knowledge is Power

His diagnosis day was a day of release and celebration for me.  It gave me a name for the challenges we were already facing and a preview of what to prepare for in the future.  Knowing these things is POWERFUL.  It allows me as a mom to empower my child to be the best he can be and help him learn how to adapt as he needs to, based on the different ways his body processes information about the world around him.

He knows he has Autism. He knows it makes him different and it helps him be able to prepare for and understand why certain situations are more difficult for him as a result.  He also knows he is smart and we will help him find ways to do anything he wants to do!