My Son Has a Hidden Disability: Fetal Alcohol Spectrum Disorders (FASD)
By Lynne K., Palm Beach County
Fetal Alcohol Spectrum Disorders (FASD) was a recent diagnosis given to my 31-year-old son. My son has been struggling for the majority of his life– from the moment he entered day care and preschool. In addition to having behavioral issues, my son was also given multiple diagnoses over the years, including ADHD, anxiety, and depression. He was officially diagnosed at around 10 years old with a nonverbal learning disability, which impacted every area of his life, from his academic performance to his social and personal life. As he grew older, he started to self-medicate. This made it easier for him to deal with the noise in his brain.
Although I’m originally from New York, I raised my son in Atlanta, Georgia starting from the time he was one and a half years old. When it comes to insurance, my son was covered through my work insurance plan throughout his life up until he turned 26. His therapy visits were typically covered by our insurance provider. On occasion, we ran into issues in which certain accommodations and support services were not covered because he didn’t have an autism diagnosis. While my son chose not to follow through with a lot of his care after he turned 18, for the most part, he was decently covered until he turned 26. Now, here in Florida, his coverage is minimal. We moved to Florida around four years ago and most of his services since moving here have been substance abuse-related, given that the FASD was hidden. Treatment centers have attempted to address his substance abuse issues, but without addressing his overall mental health as well, these efforts have been unsuccessful.
My son has difficulty understanding anything that is nonverbal, including facial expressions and body language. I could make faces at him while we’re talking, or I could look at my watch to indicate that I have somewhere to go soon, and he wouldn’t really get it. He is very literal in his thoughts and language processing. Despite all of my son’s diagnoses, there was always something missing– like a missing piece. None of the doctors we visited were able to pinpoint the nature of his challenges.
Over the years, we didn’t get a lot of help or support for the issues my son experienced. It was always pointed out that he was just “being bad;” that his behaviors were attention-seeking; that he understood certain things one day and didn’t understand them the next; and that he didn’t understand the consequences of his actions. Moreover, I was told that I was being inconsistent with him, and “bad parenting” was a phrase that was sometimes even thrown around. However, there was always something that just wasn’t right about all of this. As his mother, I was able to see where my son thrived. I would point out the situations in which he did succeed, but nobody would really listen. Fast forwarding through the years, this pattern describes the entirety of my son’s academic and personal life.
Although I’m semi-retired, my professional career was in root cause analysis. I think this part of me took over as I searched for answers because the situation continued to not make sense to me. About two and a half years ago in 2019, I Googled, “How do you help somebody who doesn’t understand the consequences of their actions?” What came up was information about FASD, and it was like my son’s resume. All of the symptoms, all of the behaviors– it was as if they were written about him. So I started making phone calls and talking to people about what I was finding. In doing so, I started to put together that my son may have been affected by exposure to alcohol while I was pregnant with him.
When I was pregnant with my son, I had no idea I was pregnant for the first five to six weeks of the pregnancy. I was working in California at the time and went to the doctor because I was feeling sick. After I was X-rayed, the doctor informed me that I was pregnant. During those five to six weeks in which I was unaware that I was pregnant, I drank socially. Nonetheless, throughout the trajectory of my son’s life– through all of the diagnoses he received by all of his doctors– I was never asked whether I drank during pregnancy.
Of course, my son was born 31 years ago, so it’s possible that education about this issue wasn’t where it needed to be at the time. I was X-rayed during the medical visit in which I found out I was pregnant, which is problematic for pregnant women in their first trimester. Additionally, my son was born with the umbilical cord wrapped around his neck, so he experienced a lack of oxygen as a result. Those incidents were always discussed in my conversations with his doctors, but never once did anybody ask if I consumed alcohol while pregnant.
After learning a bit about FASD, I reached out to the Florida Center for Early Childhood in Sarasota, FL in 2020 or late 2019. The Florida Center has the only clinic in the state that conducts evaluations for FASD. It takes a team of professionals to conduct the evaluation, including a psychiatrist, a psychologist, a speech therapist, a behaviorist, a teacher, and a neurologist. There was a year-long waiting list, and when his year came up on January 27th, 2021, we ended up getting placed back on the waiting list because my son was in treatment at the time and the support staff did not have enough bandwidth to support him during the evaluation. However, I couldn’t wait another year. I ended up exploring and figuring out how to get him evaluated independently, while the other part of his evaluation and diagnosis of FASD eventually happened at the Florida Center. In total, it was about a year and a half after my initial contact with the Florida Center that we were finally able to get his evaluation done.
While going through my son’s evaluation process, it wasn’t so much as a label that I was looking for. He had truly already been labeled for his entire life, which isn’t good. Rather, it was help that I was looking for. When my son was finally diagnosed with FASD, people in my life were concerned that I felt guilty or embarrassed about it, especially because of the stigma associated with individuals who drink while pregnant. However, it’s important to remember that I was drinking during a time period in which I didn’t know I was pregnant. I did feel bad when my son received his FASD diagnosis, but more than that, I felt like I wasn’t crazy.
My son has been through so much in his life, to the point that when he got older he turned to substance abuse and self-medication. Sadly, when substance abuse and self-medication come into the picture, a lot of heads just turn away. The world has been so difficult for him and it has been so hard for him to exist in it. Moreover, I went through so many moments while raising my son in which people told me I was in denial about his behaviors. Everything was turned around on me and my parenting was blamed. I felt bad. I felt guilty. However, the moment my son was given his FASD diagnosis, I experienced such a mixture of feelings. I felt relieved. Even though the diagnosis of FASD is a grim one, I even felt hope. It felt nice for me to be able to think that, with this new information in our grasp, there could potentially be somebody out there who could help.
Education, interventions, treatment options, support services, health care, and financial services are all important areas that need to be advocated for if we want to improve the lives of families of individuals with FASD. Although I’m currently working part-time at a jewelry store, I haven’t been able to find permanent employment in Florida. My son has no means of employment and financially, there’s just no help for him. Being 31 years old and having your mom continue to support you and advocate for you is not something that is really accepted in this world. In addition, early intervention is key. If somebody had asked me early on if I drank during pregnancy and was able to inform me about interventions I could start for my son when he was four, five, or six years old, things could have potentially been different by this time.
FASD is a hidden disability, which makes it that much harder to diagnose, educate about, and understand. People with physical disabilities who need a wheelchair or some form of physical device to support them are usually able to access what they need. Similarly, individuals with an autism diagnosis have services, accommodations, and therapies that are covered under that diagnosis. My son deserves to be helped just the same. He is a kind, gentle, and intelligent young man with a heart of gold who feels lost in the world without anybody to help him. Nobody chooses to live like this. None of this is his fault.
It feels like I’ve been exploring the entire world trying to get help for my son. He faces a lot of challenges, but I continue to have hope for him.