After almost 2 years of advocating for my son’s rights, Liam was officially diagnosed with Autism
Spectrum Disorder December 2013. I had suspected Liam might be on the spectrum. However, as a Black single mother with limited financial resources and little understanding about Autism Spectrum Disorder I felt like I was constantly battling to get him help and make sure he didn’t fall behind. My lack of financial resources made the journey to diagnosis and treatment unnecessarily long but it taught me a lot about my family and myself.
Noticing Signs of Autism
I had a great and uneventful delivery when Liam was born in 2009. Up until 2011 his development was seemingly neurotypical (the medical term for “normal” development). I noticed something was different and Liam’s then daycare director also did. It began with a slight speech delay; some letters and sounds Liam would make were not very clear. As his mother I understood him most of the time, but usually others didn’t.
Hurdles to an Autism Diagnosis
My first referral was to our local hearing and speech center to see if Liam’s hearing had an issue. He had a hearing test and the results came back that his ears were not the cause of concern. It was then that Autism Spectrum Disorder became a reality. At the local public schools they are able to use different diagnostic testing to determine the likelihood of Autism. Unfortunately, in the state of Kentucky, these are educational diagnoses and don’t hold up as an official medical diagnosis. We would have to get an official diagnosis from a medical professional.
I had to find where I could go to get the medical diagnosis from a Psychologist or Medical Doctor who specializes in neurological disorders. All the centers and practitioners I could find were all $600 or more for visits; these prices weren’t affordable amount for me. I was a single mom, student, and had limited funds. Additionally, long waiting lists were also a barrier.
A Breakthrough to Diagnosis
Finally, I had a breakthrough when I discovered the college I attended at the time had a graduate Psychology program that specialized in the diagnosing of ASD and other neurological disorders.
Once we were able to get the ball rolling on the diagnoses, the floodgates of options opened up. So many more options became available. Kentucky offers a program called the Michelle P. Waiver that is a type of Medicaid to assist kids of varying abilities to access services they need. The services include: Applied Behavior Analysis (known as ABA) which teaches people to change behavior of social significance and respite care which provides relief to full time caregivers and many others are provided free of charge to families. The waiver program has been a Godsend to say the least.
Being a single mother, students, and financially poor made our journey to diagnosis hard and longer than necessary. I believe that every parent has the right to services and should be allowed to reach a diagnosis for their children without long wait times and cost being a barrier. I’m proud of myself for getting my son the care he needs and I’m proud of my son for being who he is.
Cicely Carter is a single mama to one amazing little boy, sometimes plus size model, college grad and current Nursing student. She loves blogging, all things beauty/skincare and fostering community with like-minded mamas.