In our own words: Diagnosis stories

Autistic people share stories of getting diagnosed at different stages in life to inspire others to embrace their unique journeys

Micah James, 49

Two years ago, at age 47, I found out that I have autism. It wasn’t until then that I finally decided to put in the work to understand myself and focus on personal growth instead of professional growth. 

Every autistic brain is different, yet they are all beautiful. I want to describe mine in hopes that it helps you support your autistic loved one and ask the right questions along the way. It's classified as autism spectrum disorder, but I have a real problem with the word "disorder" because it assumes that neurotypical is correct and autistic is wrong. Different is not better or worse, just different.  

I am so happy to see us evolve to where we have a broader spectrum of words to describe the beautiful diversity of human souls. We have come so far with autism detection and awareness, but we still have a long way to go before we even understand how we can better harness the gifts of the autistic brain, and how we can provide adults with autism better resources so they can live their best life.  

People with autism have been able to accomplish some amazing intellectual feats that have benefited the world. I wish I had discovered my autism sooner. I love my autistic brain and accept the imbalances as part of the journey. To help your autistic loved one, read a lot, ask a lot of questions and look for the well-documented behavioral signs, as they can manifest at different stages of development, even adulthood. 

It is my intention to make raising #autismawareness my life's purpose. I hope some of this is helpful to you and yours. 

Learn more about Micah’s journey in this Q&A:

What thoughts ran through your mind when first hearing the diagnosis?

Relief!  So many unexplainable quirks suddenly had answers. How do you explain something like “sensitivity to light touch” until you read the words yourself and draw the connection? To understand why I’ve felt different my whole life was, in and of itself, a huge relief. Why am I so smart but feel so gullible and foolish sometimes socially? On and on… 

When you realized that you indeed had autism, how did that make you feel?

Motivated to continue working on myself and focusing on personal growth instead of professional growth as I had done my whole adult life to that point. I really dug into understanding my particular shade of autism (my strengths, my triggers, my imbalances) but also my gender, sexuality, spirituality and more. 

How do you view your autism today? 

Understanding my autism was the key to the rest of my self-discovery and getting to a place of being capable of living my best life. I love my autistic brain and wish I had reached out for help sooner to understand its capabilities and its specific sensitivities and imbalances.   

I’ve decided to become an advocate for autism awareness and hope to share my experiences on the autism, gender and sexuality spectrums so that others who think they may have autism, their family members and friends can get support and perhaps understand longer term expectations, tips for identifying/managing sensory challenges, etc.   

I recently came out personally and professionally as being autistic and non-binary. The support and the renewed connections have been truly wonderful. Several people have responded that my post has given them insight into a loved one or themselves. That is heartwarming and valuable to me. 

How does it help you thrive in your daily life? 

Professionally, my autistic brain is a competitive advantage in many ways. I’ve spent my career in marketing, strategic planning and business leadership roles.   

What challenges do you face? 

For the most part, I’m able to manage my sensory imbalances by controlling my environment, preparing ahead of new adventures and being mindful enough to step away from a situation for a few minutes if needed. My greatest challenge is interpreting “people” data. I’m great with statistics, trends and pattern recognition professionally, but I tend to struggle with social awkwardness and have some pretty introverted characteristics.   

What services have you received and/or are currently receiving? 

Initially, I worked with a life coach that specialized in autistic adult skills development. Both she and one of her adult children have autism and I found a great deal of guidance and understanding in our shared experiences. 

Autism means something different to everyone. What does being autistic mean to you?   

I see my autistic brain as a gift—a gift that comes with certain imbalances that I need to manage to in order to live my best life. It does not in any way limit me from living that best life, it just makes it a little more interesting. 

Meet Idoh L., 23 

Hi, Autism Speaks world. My name is Idoh and I live in New Jersey. I was born in California and was diagnosed at 2 years and 10 months old by a team from the Los Angeles United School District, and later confirmed by a pediatric psychologist and the Early Childhood Program at UCLA. 

When I was growing up, I did not know what autism was. I didn’t find out until later in life when I expressed an interest in joining the U.S. Army. I always wanted to join the Army and communicated with the NJ State Senator, who sent me a letter saying the Army will not accept me because of my disability. Of course, I was disappointed and very angry at the time. It was news that hit me hard and left me searching for answers.  

At the age of 17, I started to understand my disability better. At the time, it bothered me a lot because I was not able to get driver’s education at school and making friends was difficult. My autism has created many challenges for me, leaving me struggling to understand people, behaviors, facial expressions, body language, etc. I just go about my life trying to be understood. Today, my biggest challenge is figuring out how to make friends because most people don’t understand me, my differences and my challenges.   

Despite some of the tough times, my many years of Applied Behavior Analysis taught me a lot! I credit it with helping me get to the place I am today as a 23-year-old man. I’ve also had speech therapy and occupational therapy. I do have a job coach who is helping me through my employment journey. I’m currently working in a hospital as a supply tech. I am aware I’m progressing slowly, but I am progressing every day. I drive, I’m employed full time, I’m independent and just want to make the most out of my life. 

To me, being autistic is being just like everyone else as a human being, it just comes with more challenges for some.  

Meet Victoria H., 29 

My name is Victoria. I am a 29-year-old single mother of a 7-year-old daughter named Raine. We live in Ridgeland, MS, and we are both autistic.  

I was 17 when I was diagnosed with autism. I was scared and in denial for years, constantly trying to fit in and be someone I am not. I confided in people who I thought had my best interests at heart, but boy was I wrong. They only wanted more gossip and more stories to tell their other friends. I dated guys below my caliber because I convinced myself that I couldn't do any better. It got so bad that my reputation suffered greatly – especially in my college years. I was known as “that crazy girl” because of humiliating public breakdowns and rampant cyberbullying. Things got so bad that I thought many times that life wasn’t worth living until a series of events changed my life forever.  

I fell in love with a man who made me very happy and we dated for three years. Unfortunately, the romance didn’t work out in the end, and he left when I was pregnant and still in college, trying to make a future for myself in the world of psychology. I was scared and my grades were suffering but something AMAZING happened thanks to a few very special professors. They knew I was autistic and going through a very difficult time, so they staged a special intervention for me and showered me with love and words of wisdom.  

My child's paternal family comforted me and offered assistance while sharing their stories as well. Then, finally, my own mother joined in the support. The SPARK happened at that moment. I started seeing myself differently and regained the confidence I needed to stay in school and continue on, even though there were still plenty of haters. 

When my daughter was born, I knew I had to prove to myself I could do this, autistic or not. And I did. I held down jobs, took care of her with support and STILL graduated from college. But then, as in life, there was another bump in the road when my daughter began struggling with potty training and other developmental skills. After testing, she was diagnosed with autism, which left me heartbroken. I felt I did this to her and now she was going to suffer like I did. But after taking some time to pray, I realized this was fate and now I can be an even greater role model to my daughter. This is when a fire was lit inside of me. 

Today, Raine is doing great! Sharing an autism diagnosis has deepened the bond between me and my daughter. She's so smart, curious and absolutely hysterical, and her father and I (yes, he came back to co-parent and is a great dad) are so proud of the person she is becoming. 

I enrolled in graduate school to better our lives. I've maintained a 4.0 GPA while working full time. When I come home, I tend to her and then prepare to do it all over again bright and early the next morning. I am so proud of myself and all I am able to accomplish. I’m thrilled to say that I am graduating in June with my master’s degree in behavior analysis to work with children and adults on the spectrum. I know this is the work I’m supposed to be doing because autism IS my life. I have high hopes to make a difference in the lives of those I work with and change the world for autistic people. Who said you shouldn’t dream big?