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How My Son's Autism Diagnosis Has Changed Me

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I’m not the person you once knew.

People grow and change. We strive to become the best versions of ourselves. We become wiser, kinder, more mature and understanding.

I started to change into the next chapter of my adult life when I was expecting my son. I wanted to be the best mother I could possibly be. I did everything right during my pregnancy. Becoming a mother changed me in so many beautiful ways. I wanted to give him the world!

All that mattered was this perfect, gorgeous newborn in my arms. Our family of three. My heart was so full. It was as if every broken piece of my heart from the past was put back together. My son gave me a second chance at motherhood. I experienced so much loss, the loss of my daughter 17 years ago through adoption and then years later multiple miscarriages when we were trying to start our family. He is our rainbow baby.

But what really changed me and my outlook on everything: autism.

It was just one word. A word that changed our lives in a blink of an eye.

I suspected my son was on the spectrum for some time. I noticed around when he was 16 months old. No one else thought so. I knew, though. A mother knows her child better than anyone.

I always knew Rocco was different. He is unique, so sweet, patient, loves music, instruments, trains, puzzles, numbers, letters, art and books. He is so smart. He is different than others his age, different in such a beautiful way.

The day of his evaluation I was alone; our appointment was during COVID-19 and only one parent was allowed in. This appointment was after a year-long wait. This is why early intervention is crucial. The evaluation waiting lists are anywhere from 6-12 months.

Walking in, I knew what the outcome would be. I remember the night before I even said to my parents and husband to prepare themselves. I barely slept that night, I was so nervous. During the evaluation, they asked me all about family history, my pregnancy, my son’s birth, characteristics of Rocco, my concerns etc. A lot of the answers to her questions were nos, but the ones I said yes to were the classic autism signs.

After the doctor’s partner was done gathering my information, we stepped into the evaluation room where Rocco was playing with the doctor. I sat quietly and watched. I just knew watching the doctor interact with my son. I knew what she was going to say at the end. At times, I’d get nervous because I didn’t want to accept it. I did not want to hear the word autism. The word autism scared me. I’m just being honest. I felt like that I would be judged, blamed, that I let my son down, I felt guilt.

I was so pleased when he made lots of eye contact, showed excellent joint attention, used gestures, sign language and pretend play during the evaluation. Looking back, I felt so angry with myself for holding on to the “look, he’s doing this and he is doing that.” I was still wrapping my arms so tightly around denial. I didn’t want to let it go. I didn’t want to hear that my son would have to struggle with the societal stigma attached to autism.

The doctor finished up with Rocco and joined me at the table. She then said what I already knew, “So Rocco does fall on the spectrum.” She went over the ADOS test in great detail with me, explaining everything so well. The doctor told me Rocco is “higher functioning,” a word we know is frowned upon in the autism community as we know there is no such thing as easy autism, but I bluntly asked her, as if I needed that as reassurance. You can judge me for this, but I was coping. I panicked. I felt guilty enough even admitting it had brought me a sense of comfort. I was all alone. It is so hard and heartbreaking to hear something is “medically wrong” with your child who is so perfect to you in every single way. It was as if hearing he is autistic came as a surprise, even though I knew. This is the first stage of grief — denial. I could instantly feel my face flush and get warm. Hearing her say my son’s autistic took my breath away. My heart started to race; I started to sweat. I had to dig so deep within myself to hold back what I knew would be uncontrollable tears. I wanted to keep my composure and stay strong, but on the inside, I felt overwhelmed.

The doctor who diagnosed my son was amazing. She was so very personable and kind. She made this emotional experience less painful. She made me feel like Rocco is going to be OK. She pointed out to me how she could see the bond between Rocco and me. She really praised me and told me to just keep doing what I’m doing. It was nice to hear such positivity from her,  such compassion from a doctor. We then discussed what the next steps would be for his treatment plan. She answered all my 1,000 questions.

My son’s autism diagnosis has changed me personally in many ways. It started with denial, then anger. I was especially angry that a lot of people were just not there for me during this difficult time. Friends didn’t call, some family didn’t say a word to me. I felt so isolated. I felt like no one cared. Did they not understand how incredibly scared we were as parents, how incredibly emotional we were? Autism has taught me who my people are. My biggest supporters are my wonderful parents. I am so lucky to have them. In many cases, the people I never expected to be the ones to support me have been there for me. Some people I haven’t spoken to in years have reached out offering support and encouragement.

I am still new to the autism world, but autism is my life. If you don’t want to be a part of that and if autism makes you uncomfortable, goodbye. Because that would mean my child would make you uncomfortable. I need to find people who have similar situations, people who are not the average parents. Parents who understand my experiences.

Once we had time to process the diagnosis, we realized autism isn’t a death sentence. He will still be able to reach for the stars and be something great. We love our son more than anything and will always accept him. Autism is what makes him magnificent. We decided to openly talk about it on social media to educate others and spread awareness and acceptance. This stage of grief is acceptance of autism. I’m not sad anymore. I am not ashamed of the word autism. It’s not a dirty or bad word.

I see the world differently now. I’m more understanding than before, kinder, stronger, tougher and more educated. I want to understand my son’s world. I want to respect how he thinks and feels. I will continue to do all I can for my son. We will move forward on our journey.

Originally published: July 7, 2021
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