What to do when your child is diagnosed with autism—from a mother who’s been there, too

In 2018, my two youngest sons were diagnosed with autism spectrum disorder (ASD) seven months apart from one another. Hearing “your son has autism spectrum disorder”—not once, but twice—upended my world in a way I wasn’t prepared for. 

None of the parenting books prepared me for my next phase of parenting. My friends, although supportive, could not relate to my new motherhood journey. I started to feel like an outsider and slowly began to draw within. My entire being was consumed with researching ASD, finding and scheduling therapy appointments and learning new approaches on how to parent kids with autism. Overwhelm was—and at times, still is—an understatement. 

I soon realized that continuing in this manner would lead me to burnout. The last place I wanted to be led on this journey was to a space of neglecting the real needs of my family and myself. Looking back, in the beginning, I needed to identify and process all of my emotions about my sons’ diagnoses. I had to prioritize making a safe space for myself and whatever feelings were rising to the top—with freedom and without judgment. I also needed to fully accept my boys for who they were.

I will never forget the time I met one of my sorority sisters for lunch.  Her own son was diagnosed with autism about 20 years ago. I reached out to her because I was struggling emotionally.  I needed to understand how she was able to gain her footing and accept her son’s diagnosis.  

We had scheduled the lunch weeks in advance, but the date we chose was almost serendipitous. You see, earlier that day, my youngest son, Adam, attended his first day at preschool and it didn’t quite go as planned. Within 10 minutes of being in the classroom, he bit a classmate, ran on top of the tables and kept trying to escape out the door.  As I observed my son’s rapid behavior, I was ashamed… I felt like I had failed my child. 

Truth be told, I knew Adam was not ready to be enrolled in a neurotypical preschool, but I forged ahead, overlooking his needs to instead satisfy my desire for him to fit in with his peers. I full-on ugly-cried over my lunch as I shared the recent school event with my sorority sister. My friend offered me a tissue and said to me, “the sooner you accept Adam and James Preston’s autism, the sooner you will be able to meet their individual needs.”  

I finally surrendered. I stopped trying to run away from autism and eventually learned to embrace and accept it. I realized that the more I dissociated my kids from the disorder, the more I was perpetuating the stigma and myths. 

Moreover, I realized I had allies who looked like me and others who didn’t; allies with many years of experience and some beginning anew; allies who deeply knew the same pangs within my gut along with the burning pressures that come from the outside (neurotypical) world; allies who were experts via subjective experience alone.

Eventually, I realized that what I originally viewed as a hardship turned out to be a blessing. The back-to-back diagnoses of both of my sons was a whirlwind of stifling emotions for me initially; however, their closeness in age and our family structure allows for them, as brothers, to have a built-in partner through this journey. 

If we were to go out to lunch together, mama, here’s what I’d share with you or any other parent about to embark on this path.

Accept the emotional journey of raising a child with ASD

Learning that your child has autism can be an emotional experience. 

It may manifest as a cyclical emotional process with many ups and downs. This process is triggering and very subjective to you as a person and as a parent. These triggers can arise spontaneously from many different sources. 

For me, a prime trigger was seeing a neurotypical peer achieving milestones that my child had not yet achieved, eliciting emotions that were still raw to the touch and reminding me of just how overwhelmed I really felt. Sadness, anger and even resentment would wash over me and send me right back to the time and place of our initial diagnosis. 

If this describes you, too, know that you will grow, you will learn and you will begin to have shifts in your perspective, and eventually you will faithfully arrive at a space of acceptance. 

During those first few months of receiving your child’s diagnosis, you will Google the topic ‘autism’ more than the healthy and recommended amount. You will complete countless, redundant questionnaires regarding the subject and even question the validity of the diagnosis—denial is, after all, part of the healing process. You will speak with your insurance provider more than some will in their entire lifetime. And you will fumble through recommended therapeutic services in a way that feels like a whirlwind. 

However, you will also miraculously find your ground, and the light at the end of the tunnel will gradually come into view (even if it’s still very far off in the distance). 

Eventually, you will realize that you, too, have a therapeutic and integral place in this diagnosis, and just as it’s important for you to enroll your child in early intervention therapies, it’s also imperative for you to place your own treatment plan and self care as a priority on the growing to-do list.   

Build your village from the ground up

In a crazy twist of fate, soon after James Preston received his autism diagnosis, I was at a Turn Out the Vote campaign event and one of the attendees standing beside me was a young man who was a recent college graduate of my alma mater.  We quickly engaged in pleasantries and at some point throughout the conversion his story started to sound familiar… as if I had previously met him.  He confirmed that we shared a mutual acquaintance and that my husband was one of his middle school science teachers.  As we were leaving the event, we exchanged goodbyes and Facebook names and in a matter of fact tone, the young man asked; “May I really contact you on social media or were you just being polite?  I have autism and it is hard for me to pick up on social cues.” I chuckled and assured him that I would love to keep in touch and that I would respond to his friend request.  I walked away from that conversation realizing, not only did I need to have mothers in my support village, but I needed self-advocates. Hearing from adults young and old with ASD was reaffirming, and truly helped to shape my perspective and knowledge about autism. Listening to the voices of the community replenished me in ways that I could’ve never imagined. 

Finding my village of ASD mothers who had come before me provided me with an air of supportive empathic energy that normalized my personal struggles and provided real-life examples of healthy coping. Connecting with them, the mothers who had over 15 years of parenting kids with ASD—showed me it had been done before, and done well. Moreover, these women were the moms who truly had to figure things out for themselves during a time when resources, advocacy agencies and social acceptance were not nearly where they are today.  

Get in touch with your innate parenting instincts

You will figure out early on that within the ASD community there are so many theories, disciplines, therapies and pillars of support. You might be afraid to even speak about the disorder without feelings of fear—fear of saying the wrong thing, or even fear of unintentionally offending someone. However, know that ASD parents and families operate within a realm that’s constantly growing and changing—we must lend ourselves and our surrounding communities a form of benevolent grace.  

But it’s still so important to not lose sight of your own parenting instincts. Have faith that you will arrive and better understand the needs of your child. As a parent, you make the best decision for your child. 

Find people who align with your morals, values and beliefs about the disorder. You may feel overwhelmed at first. Know that you are not alone and that the majority of parents felt the same way in the beginning (and some of us still do).  

Trust the process—and your child

Stay the course and take your time. Learn to embrace all the beauty, innocence, and joys of your child and the totality of theirhis/her/their being. Focus on what your child can do and celebrate the victories of achieving every milestone, no matter how big or small. 

Try not to “conquer” autism within the first 60 days of your child’s diagnosis 

Instead, embrace it. You will hear repeatedly that the ASD journey is a marathon and not a sprint. Take heed and know that the same love, grace and patience we want the world to show our kids, we first need to show ourselves. Finding your village of support and trusting your gut will be the key to maintaining your emotional health. 

If there is one thing that motherhood has taught me, it’s that a mother’s intuition is the North Star in traveling this ASD terrain.  

A version of this story was originally published on Nov. 1, 2021. It has been updated.