Ashley explains, “Maci was a typically developing child. I knew what to look for in child development, having already being the parent to the two older children. While Maci had her 18-month check-up, I completed the paperwork and wrote, ‘she talks more than other kids her age.’ However, at 20 months of age, Maci changed completely. She would not make eye contact. Suddenly, she hated physical touch and did not want to be picked up. She stopped talking. Screaming became her only form of communication. If she accidentally did something wrong, she would hit herself. I knew something was not right, so I began researching autism on the internet. As I learned more about the disorder, I believed Maci could very well have autism. We took Maci to see our family pediatrician. However, after looking at Maci for only a minute, that doctor concluded that Maci did not have autism. Instead, we were advised that Maci had a language delay and she needed to stop having so much screen time.”
“My husband was in tears and I begged the doctor to give us a referral to test Maci for autism. A pediatrician referral was required by our insurance to cover the diagnostic evaluation. Since Maci did not respond to her name, the doctor thought it could be a hearing loss. Rather than a referral for an autism test, she gave us a referral for a hearing test. Maci passed the hearing test. At this point, I knew I had to get someone else to help my child. I discovered a study being conducted at Vanderbilt University. For Maci to participate in the study, she would have to have an ADOS II diagnostic evaluation test. When the test was completed, Maci was diagnosed with having level III autism. Though our pediatrician apologized for not listening to us, we felt we needed another physician to better support our family. In hindsight, the lack of a referral worked out for us. If the doctor had given us the referral for a diagnostic evaluation, it may have taken much longer for her to be diagnosed through the normal channels. Most clinical psychologists have long waiting lists.”
Ashley’s story continues, “Maci was diagnosed one week after her second birthday. After her diagnosis, I began searching for services for Maci. She had been receiving speech, occupational, and developmental therapy through TEIS (Tennessee Early Intervention System). Eventually, we were able to obtain one hour per week of in-home ABA therapy through the program. When Maci turned three, she was no longer eligible for TEIS. She was not ready to enter the school system. Instead, we were able to obtain a service plan through Metro Nashville Schools to allow her to receive Speech and Occupational Therapy. We later toured the autism-specific speech-based preschool at Vanderbilt. We decided to start the preschool program and continued some ABA therapy. Maci made huge improvements. She went from being non-verbal to being minimally verbal. She could express her wants and needs and she made eye contact again. She now loves hugs, cuddles, and tickles and her self-harming behavior had stopped.”
So, as explained in the beginning of our story, “Maci was aging out of the Vanderbilt program and COVID-19 restrictions were coming into effect. We needed another option. Autism ETC contacted us with an opening for Maci. I felt as though she was ready for the type of ABA services that Autism ETC offered. When we began services in April, I was excited we were able to do in-person therapy. I felt comfortable sending Maci to the center because I knew COVID-19 precautions were in place. I was looking for a quality, goal, and data-driven program. I knew that Autism ETC offered that type of program, and it would prepare Maci for kindergarten.”
Maci participates in the day therapy program on a part-time basis, attending from 8:45 a.m. to 12 noon, Monday through Friday. When asked about the parent training offered by the Autism ETC, Ashley said, “Prior to Maci becoming active at the center, I participated in the Community Training Workshops they offered. This gave me an opportunity to learn and understand more about the program at Autism ETC. Since we started services, I have been able to meet with Maci’s BCBA, observe her in the classroom, and watch her participate in DTT (Discrete Trial Training) sessions. After the first four days Maci attended Autism ETC, I told my husband I could see a difference in her. She listens and follows directions better. Her screaming has decreased, and she is better able to communicate. She can ask for help and say our names. Her motor skills have also improved. She has made huge improvements in a short time. The staff has also worked with her on her social skills even though she cannot associate with large groups of peers due to COVID-19 restrictions.
Ashley has the following advice for other parents: “Do not wait. Early intervention is the key. If your parental intuition tells you something is not right, follow it. Keep fighting for what your child deserves. It can be even more difficult if you are concerned with a first child. Because Maci has two older siblings with typical development, we knew immediately when something was wrong. I encourage parents to participate in studies and seek out grants because the cost for services can be intimidating. Do not wait. Once Maci received her diagnosis, we were relieved. The best comment that I ever received when telling our family and friends about Maci’s diagnosis was ‘Congratulations!’ I did not understand it at the time, but I now realize that it was a defining moment in our lives. The diagnosis allowed us to receive the services she needed.
Maci’s autism is a journey, and we are going to have milestones and proud moments every step of the way. Our hopes and dreams for her did not go away. We have just adjusted the way that we are going to help her get there. Maci is the same child she was before the diagnosis. Now, however, we know more about her and how to better help her succeed.”
As Ashley looks to future for Maci, she shared her thoughts: “I think in the short-term, Maci will be ready for kindergarten. I believe she will be able to focus and learn with other kids. Her social skills will flourish. She is getting so much help now. She is at a higher level. The skills she is now learning will help her succeed both academically and socially in the future.”