I don’t want my child to be labeled….will a diagnosis help?
We Welcomed Our Son With Open Arms
When we adopted our son at four weeks old, we knew he would likely have some problems due to his prenatal exposure to drugs and alcohol. We envisioned a “slow learner” who would need lots of encouragement, help, and patience. He was also born with Amniotic Band Syndrome but seemed to have won the lottery in that department, he was only missing a few parts of a few fingers and toes. So he wouldn’t be an A student and probably wouldn’t play professional sports. No problem. We would love and support him no matter what.
Developmental Delays and Evaluations
As our son grew a little bit older, however, we began to wonder if we should have him evaluated for Fetal Alcohol Spectrum Disorder. His development was unsteady. He clearly wasn’t understanding language very well. At a year old he still had his startle reflex and seemed completely impervious to pain (he would walk barefoot in the snow without flinching). We happen to live just a hundred miles from some of the world’s top experts in FASD (and I’m a bit embarrassed to link to their website because it looks so dated…what the heck, U-Dub?) Initially, Chuck and I were both against the idea of him being “labeled” mainly because there is no treatment for FASD. Any damage caused by alcohol is permanent and unchanging. And if it can’t be treated, why label it? We also didn’t want him to become “that kid with FASD”. Whether or not he had FASD he was so much more than a diagnosis. We felt that by avoiding labels we were protecting him.
Why Seek a Diagnosis?
If there is no treatment why bother with a diagnosis? While we felt this way in the beginning, we eventually came to realize there are certain advantages to having a diagnosis.
Labels can be a good thing.
Yes, our son technically has a “label” now and maybe some (a few?) people see him as “that kid with FASD“ but in reality, this particular label helps to explain some of his behaviors. Think about autism for a moment (a diagnosis that more people are familiar with). Knowing a child has autism can often help people reframe behavior. They understand that an epic tantrum may be overstimulation or frustration caused by autism, not just a bratty kid. Our son rarely makes appropriate eye contact or answers questions in a typical way. He often acts like a child half his age. Sitting there in a dark hoodie, giving nothing more than a grunt in response to an adult’s question…without a diagnosis, he appears to be rude. In reality, he has trouble processing information.
Labels can open doors.
In our son’s case, having a label of FASD doesn’t open any doors. FASD is still poorly understood and recognized. Autism, though? If he had that label he would qualify for ABA therapy and summer day camp programs. We are hopeful, that in the future, his FASD label will help him access more services.
Labels can help in school.
Our son started school in third grade (we were homeschooling everyone at that point). He was given an IEP from day one. You know what happened, though? By sixth grade, he had worked himself right out of his IEP. While this might be great news for some kids, our son desperately needs the support to succeed. When he no longer qualified academically (with many, many supports in place) we were able to keep his IEP under the “other health impaired” category, due to his FASD diagnosis. Without it, they would have removed the IEP, removed the support, and he would crash and burn. In this case, his label is helping him to succeed.
Labels can help at home
Chuck and I have done the best parenting we ever had for our son in the last year. After extensive testing, we learned that he is struggling far more than we ever realized. We have “lowered” our expectations to a level that is reasonable. We understand more of the whys behind the way he acts. I no longer feel compelled to make excuses for him. He is who he is and we are doing our best. We are making more accommodations than ever, and everyone is doing better because of it.
In the fourteen years since adopting our son, we have learned a lot. We have learned he does indeed have FASD (and possibly autism). We’ve learned to make hard choices to help him succeed. We’ve learned we have to reinvent our parenting.
And we’ve learned that labels can help him succeed.
If you want to know more about how autism affects communication, Masters in Communications.org has a great article Autism: How it Affects Communication and the Way People are Working to Improve It.
How do you feel about labels? Do you feel like they help or hinder kids?