One Thing I Wish I’d Known About Before My Son was Diagnosed with Autism Spectrum Disorder

I was shocked when I was informed that my son was struggling at preschool. 

He was four and I thought he was having a tough time adjusting to his routine and new classroom. My husband and I were called into a parent teacher conference.  I was very pregnant, it was hot, and I just couldn’t believe the words I was being told. I heard the teacher say that all of the unique characteristics that made up my son were actually developmental challenges. My world suddenly got smaller and I felt hot anger rise up within me – crossed with a faint nauseous feeling – because I knew – I knew his teacher was right.

Everything your first born does is wonderful and unique and amazing.

When he only slept from 1am till about 5am (if we were lucky), we thought “WOW, what a dynamo – this kid has energy!” He ran everywhere and I mean EVERYWHERE. He ran on his tip toes. How amazing is that? He always had his precious dinosaurs by his side. He climbed everything: cabinets, stairs, the bricks on our house, you name it, he climbed it. He was also an escape artist.  Doors could not be locked in front of him – he would figure out how to unlock them and run.  Sometimes it was scary, but we just adjusted our expectations and found new ways to contain him.  Sure, he wouldn’t look at you in the face, but he could hold a conversation with an adult. 

Why couldn’t his teachers see all these amazing things about my boy?

Instead, they saw things that we didn’t see.

Deep down in the pit of my stomach, I knew that we could no longer explain his behaviors and quirks away. The sum of the things we didn’t see? Together they had a name – Autism Spectrum Disorder (ASD). 

Autism Spectrum Disorder affects roughly 1 in 44 children. Autism is referred to as a spectrum disorder because no two children present the same way. Autism isn’t like COVID where you either test positive or you don’t have it. It’s a range of behaviors- going from extreme to not even noticeable. In our family of three children, two have ASD, each with their own manifestation and journey. 

Both of my autistic children have benefited greatly from early diagnosis and early intervention. 

With each child, my husband and I waited months between being referred to screening and actually receiving an autism diagnosis. And even after that diagnosis, it still took additional months before we were connected to the appropriate services. 

Developmental pediatricians often have long waitlists and our experience was like that of so many other families. Waitlists were unbearably long and the process of getting diagnoses and then services for my children was cumbersome. The periods of time spent waiting to figure out what we needed to do were the worst.  My husband and I had no idea what we were doing, no one to turn to, and all we could do was wait. It felt hopeless. 

Technology has changed the way we look at autism and the supportive resources available to families impacted by autism.

There are now services that can assist with providing a diagnosis right in your own home.  It’s a  service that I could have only hoped for and now so many moms and kiddos can get earlier diagnoses, which means that services can start sooner. Thank goodness for technology! We are now able to receive top notch medical care through virtual appointments right from the comfort of our own home.  Virtual appointments are much less anxiety producing for us and for our kiddos. 

Find a Provider that Provides Diagnostic Tools & Resources 

There is an amazing company that services our area to not only provide an in-depth evaluation of your child, but also assist with resources to help you and your family adjust to this new diagnosis.  

As You Are not only helps with making sure you have an accurate diagnosis but also provides a Care Sidekick that will help you as you continue on your journey. If you are still unsure about what you and your family need, or if you are looking for more information, you can fill out the screener which is used to determine a child’s current probability of autism based on their age. 

Getting Ready for Your Virtual Appointment

The following points will help you and your family prepare for your first virtual meeting. 

  • Just like an in-person visit, a virtual visit is going to have some intake paperwork for you to complete. Make sure you fill out everything and send it in well before your appointment.  
  • Make sure your electronic device (tablet, laptop, phone, or desktop) is fully charged or connected to a power source, and that it has full audio and visual capabilities.
  • Have some items available from around your house such as toys, stuffed animals, bubbles, etc. 
  • Have an item on hand that your child needs help to open – like a cookie jar or plastic box- just as long as they can not open on their own.
  • Prepare to attend your appointment with your child in a quiet space in order to limit distractions

Getting Evaluated 

In a few appointments, your provider will be able to help you have a clearer understanding of your child’s diagnosis and you will receive tools that you can use to move forward.  A process that used to take months because of provider shortages and massive wait times is now streamlined and available to moms here in Texas. 

At your first visit, your physician will get to know your child , and schedule your child’s next appointment. Your child’s second visit will be a behavioral observation which will consist of a few activities.  At your child’s third appointment, your child’s provider will go over the evaluation results and the findings from their observations. 

If you receive an ASD Diagnosis

An ASD diagnosis will undoubtedly change the way you look at things and may change the way you and your child experience the world. There will be people to help you along the way – from speech and occupational therapy to life skills and other resources there are people who can help you along the way. Let them. They can be such a light on your journey. 

The best piece of advice that I have ever been given by a physician after my first son’s ASD diagnosis was that it will be ok. She was right.  It will be OK.  There will be tough days – but you, mama, are tougher. 

Most importantly, please remember that you are not alone.  You have entered into a community of moms that you may not have asked to join – but who will lift you and your kiddo up when times are hard.  You got this.  You can do hard things.  You are amazing. 

Alamo City Moms
Alamo City Moms is written by a collaborative and diverse group of mothers. We strive to provide moms with relevant, timely and fun information about all things mom here in the greater San Antonio area.