Raising Girls on the Spectrum: My first account,along with other moms raising ASD girls

By Christina McGairk

According to the CDC, in 2021, 1 in 44 children were diagnosed with autism in the United States. CDC data in 2018 showed that 1 in 27 boys had autism compared to 1 in 116 girls with autism.

When my daughter TiTi was diagnosed with autism spectrum disorder (ASD) back in 2015, at the age of 3, little was known about girls on the spectrum. Most of the research pertained to boys, leaving autistic girls under the radar mainly because autism manifests differently in girls.

A 2019 report in Medical News Today found that girls may avoid eye contact like their male counterparts and have repetitive behaviors, but other signs in girls may be overlooked. For instance, delayed speech, being more quiet and withdrawn, and increased irritability and meltdowns are more common in girls.

I had a high-risk pregnancy due to multiple fibroids. When TiTi arrived, she was a happy, normal baby girl. Her abilities to crawl and walk were a little delayed by two months, according to the charts and graphs. She also had a reflux issue after eating, but other than that, she was developing typically. When she turned 1, she was talking up a storm, saying multiple words that she picked up like “Hi,” “Bye,” “Mommy,” and started saying some of the alphabet. Then, about the age of 1 ½, I noticed all of her vocabulary went away. I just figured she got tired of talking or was just shy. When she turned 2, I noticed she walked on her tiptoes. Her doctor believed it was a sensory issue and to keep an eye on it. When TiTi was 2 ½, my boyfriend at the time said he noticed some of the same traits in TiTi that he saw in his granddaughter, who had a developmental delay. I did my research and got her enrolled in the First Steps program. I had one person come in to work with TiTi with her numbers and letters. Another person helped her with her sensory issues. Then at the age of 3, although she was avoiding eye contact every once in a while before, she completely stopped looking at anyone who called her. Her speech was also still delayed. I babysat a couple of children who had the same issues and were the same age as TiTi and were later diagnosed with autism. I think deep down in my heart, I knew she had autism, but I had to turn over every stone before I made the final step. I had her hearing checked. Her hearing was fine. I had her eyes checked. Her eyes were fine. That’s when I knew I had to take TiTi to an autism care specialist to see if she did, in fact, have autism. I took TiTi to Riley, where she went through a battery of observations. They were checking to see how she grasped objects, how she formed her words, how she interacted with them, and if she participated in pretend play. After going over TiTi’s results, the specialist said TiTi was right on the border. She could fall on either side. I took some time to let the news marinate, and I decided that if her ASD diagnosis helped TiTi get the help she needed, that’s what needed to be done.

I’ll never forget that day. I looked at my daughter in the backseat and started crying as I drove out the parking garage. I cried not so much about the diagnosis but knowing she would struggle most of her life and had a long road ahead of her. After a few days of mourning the loss of what could’ve been, I found this unbelievable strength. I did my research; I made phone calls and appointments for TiTi’s speech therapy, occupational therapy, and physical therapy. I kept records of everything pertaining to her diagnosis in a huge binder. I became the strong Mama Bear and advocate I needed to be for my daughter and still am.

I spoke with other Mama Bears raising daughters on the spectrum to share their experiences, challenges, and how they overcome it all.

TiTi has such a big heart, a contagious smile, and a loving personality. Everyone absolutely loves her. Yet still, I wonder if she will ever find love and be in a relationship–also, if she will ever be able to live independently.

SHARON SMITH, FISHERS DAUGHTER: ADRIANA SMITH, 22

Smith’s daughter Adriana was diagnosed with autism spectrum disorder when she was 18 months old, earlier than most. She wasn’t surprised by the diagnosis since Adriana’s oldest brother Quinn was diagnosed with Aspberger’s syndrome, and her other brother, Noah, was diagnosed with ASD.

Smith said the first sign of autism Adriana presented was not responding to her name, only to favorite TV shows. She also had a fascination with ceiling fans. Like myself, Smith felt like she didn’t have enough information after Adriana was diagnosed. This is what she had to say:

Do you feel like you received enough information about Adriana’s diagnosis and how to meet her needs? “No. Apraxia would better describe the issue. Apraxia is a neurological disorder characterized by the inability to perform learned (familiar) movements on command, even though the command is understood and there is a willingness to perform the movement. Both the desire and the capacity to move are present, but the person simply cannot execute the act.”

One thing I’m not looking forward to in raising TiTi is puberty. My mom gave me “the talk” the first time when I was 5, then she did it again when I was 7 but also gave me a book. As for TiTi, I’m not sure if she understands what’s currently happening to her body and beyond. I’ve given her the “stranger danger” and “bad touch, good touch” talk, but that’s about it. She seems to understand it. So how exactly do you deal with the progression of puberty with a daughter on the spectrum? While Smith stated her daughter Adriana is on Depo shots to stop the blood flow, Cantrell took this approach:

How did you deal with puberty when it came to your daughter? “As puberty began, Monet had a variety of emotional behaviors. She cried a lot, seemed depressed, and did not sleep well. When I felt the time was approaching, I started to demonstrate how to care for her menstrual cycle. I explained through visuals and tangible examples. Monet also learned and adapted from watching her other sisters. She can also vocalize when she is experiencing headaches and cramps.”

VIVIAN BROOKS: INDIANAPOLIS DAUGHTER: RAYNA BROOKS, 26 Vivian Brooks’ daughter Rayna was diagnosed with a communication delay at 2 years old but was later diagnosed with autism and pervasive developmental disorder-not otherwise specified at the age of 5. Brooks said she doesn’t have any concerns about her daughter being in a relationship because the interest is only superficial. But she does have daily thoughts about her daughter’s future.

What concerns do you have, if any, about her future and being independent? “It’s a daily concern of how her future will look when Mom and Dad are no longer with her. Rayna most likely will not hold a job and will require 24-hour supervision. Her 22-year-old brother is her guardian. I hope she can live on her own with direct care staff and remote support. Exploring the option of Safe in Home to ease the burden on my son when the time comes for him to be her guardian.”

LISA CANTRELL, FISHERS DAUGHTER: MONET CANTRELL, 14

Cantrell’s daughter Monet was diagnosed with ASD at 4 years old. The autism world was all new to her. She said she had never been around anyone on the spectrum and initially had mixed emotions about her daughter’s diagnosis.

What was your reaction when you received Monet’s ASD diagnosis? “I had many mixed emotions. One emotion that seemed to stick out the most was the emotion of defeat. I felt defeated mostly because I had other children to care for, and they were all close in age. It seemed almost impossible, but I tackled it each day. I became stronger and wiser on how to care for her and her siblings. She has taught me so much about how to love.”

How did your family react to the news? “My husband and I both had feelings of denial. As a mother, I thought I could pray it away. It was very hard on our other children. Monet needed a lot of care and attention, and her siblings struggled to understand her needs.”

I’ve learned about mother/daughter relationships, no matter what spectrum, that they have different dynamics.

Do you notice a different quality of your mother-daughter relationship compared to other mother/daughter relationships you see? SMITH: “We are super close. She is the youngest of three and the only girl.”

CANTRELL: “I wish I had more opportunities to be around mothers that have a child with autism. I also think that I cannot compare my experience to others because they are so different. Autism is such a wide spectrum. I do notice that Monet trusts me to love her and understand her needs. She is comfortable with me and willing to confide in me.” BROOKS: “Absolutely, I noticed, and I had to stop because it would make me depressed. My biggest disappointment was thinking about how she will never be married and have a child. I have two sons, and it’s not the same when they have children. I now focus solely on strengthening our bond and connection. It took me a while, but I’m finally here. Starting Rayna’s Clubhouse this year has brought us closer. She enjoys and participates in the social activity I host for special needs youth of all ages. Rayna’s Clubhouse is a nonprofit. Our mission is to provide a safe place for youth and young adults with intellectual and developmental disabilities to engage in social, recreational, and community-based activities.”

TiTi has shown me how to love on a whole different level. She has also taught me to be more patient, determined, and persevere. Coincidentally she also taught me how to deal with conflict. I hate dealing with conflict. I’d rather melt away into the shadows when it comes to things like that. BUT, when it comes to TiTi, I play zero games. If I feel something isn’t right about her education, care, or whatever it is, this Mama Bear is ready to defend her. I always say I am her voice, but honestly, she gave me my voice as well.