“It took me years to realize that I was the only one who was going to be a true advocate for my son.”

I was told my son only wanted attention.

I was told my son needed more structure at home.

I was told my son was just throwing a tantrum.

What I wasn’t told, until 12 years later, is that my son has autism.

When he started preschool, I was getting calls every single day about things he was doing "wrong." It was so confusing for me as a parent to try to understand the situations that they were explaining because, when he was at home, I didn't experience any of the same behavior.

His continued outbursts raised red flags with the school that something had to be happening in his home life to cause him to act out. Shortly after my first call from the school I had Child Protective Services called on me. At this time I was a 23-year-old single mom–beyond scared that I was doing something wrong and I was just too young to understand it. Scared that my son was going to be taken away because the school felt I was unfit. But I knew that his home life wasn’t the issue. CPS walked the home and found nothing that seemed to be out of the norm, nothing to suggest that his homelife was causing issues in his school life. I was just told to take parenting classes to better understand how to handle him.

From preschool all the way to 7th grade I heard the same things: “You need to take classes. It’s something that you are doing wrong at home. It’s the lack of a father figure in his life. You should take this more seriously if you don’t want your son to be a felon as a child.” After years of hearing that I was the bad parent, I started to believe it. I knew it was something that I was doing. So I took parenting classes, I read books, I asked for help anywhere I could. Yet, nothing was getting better and I was getting more and more depressed. I couldn't figure out how I was supposed to improve his school life from home, when his homelife wasn't the issue.

By the end of 2nd grade I had enough. I was sick and tired of feeling like I was at fault and sick and tired of hearing that my son wouldn’t amount to anything but a jail sentence. I read as much information as I could. I educated myself on why this behavior could be happening, and I started to see signs of autism. By the 3rd grade I brought up these concerns with teachers, counselors, and doctors and was quickly told that wasn’t the issue.

I remember reading in a book that: Although autism spectrum disorder (ASD) affects people of all races and ethnicities, research shows that African-American and Latino children are typically diagnosed at older ages, giving them less of an opportunity to receive the proper intervention and treatment to help them thrive. Instead, their learning disability is twisted and made to seem like it is just a behavioral issue that is rooted from a poor home structure.

So this time I wasn’t going to back down. From 3rd until 6th grade I stood up for my son and started holding the people accountable who were making accusations that he was acting out because I was a bad parent. I fought for him to get the help he needed at school. I fought for him to receive the testing for an IEP (Individualized Education Program). I fought for my son when it felt like it was us against the world, and FINALLY we got someone’s attention. Someone believed me, someone saw the signs no one else could, and my son received a diagnosis that made the years of difficulties make sense.

At 12 years old, he was diagnosed with high-functioning autism (HFA, for short). HFA is an autism classification where an individual exhibits no intellectual disability, but may exhibit deficits in communication, emotional recognition and expression, and social interaction. I was able to get a transfer to a school that had a better understanding and more compassionate approach to educating children with autism, so that my son could work on building his future based on his abilities and not just the expectations that others had placed on him since he was in preschool.

I let people convince me that my concerns weren’t a real issue, and that everything could be fixed by being a better mom, or providing more structure than we already had. I felt powerless, I felt isolated, I felt alone. It took me years to realize that I was the only one who was going to be a true advocate for my son. I had uncomfortable conversations and expressed my concerns to anyone who would listen, because I thought surely I wasn’t alone. I want anyone else who may be going through a similar situation to know that, that as isolated as you may feel, you are not alone. Don’t be afraid to speak up for your little one. Don’t be afraid to step on toes. Do whatever you need to do to ensure that your little one has the best chance. 

Here are some resources I found to be helpful.

• The website, Spectrum
• Health City's article on Autism Disparities and Racism
• Autism Speaks' 100 Day Kit for School Aged Children
• A community of parents who share their experiences through TikTok 
• All Cats Have Asperger Syndrome by Kathy Hoopmann
• Inside Asperger's Looking Out by Kathy Hoopmann
• He's Not Naughty: A Children's Guide to Autism by Deborah Brownson
• Different Like Me: My Book of Autism Heroes by Jennifer Elder

This story was written by Kelli Ulrey for our Hello Parents series. Our mission is to create a community of extreme inclusivity. Appreciating what makes us different and what we all have in common. No judgment. Just a village of support.

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