Labeling theory is the theory of how the self-identity and behavior of individuals may be determined or influenced by the terms used to describe or classify them. Labeling theory holds that deviance is not inherent to an act, but instead focuses on the tendency of majorities to negatively label minorities or those seen as deviant from standard cultural norms. A stigma is defined as a powerfully negative label that changes a person’s self-concept and social identity.-Wikipedia
When I say I label myself as “Republican” you automatically get a thought in your head about me. (i.e. Trump supporter) When I say I label myself as a “southerner” you automatically get an idea about me in your head. (i.e. Sweet tea lovin’) When I say I label myself as a “Hot Mess Momma” you instantly get a picture of me in your head. (i.e. walking disaster with coffee in one hand and wine in the other) Are your thoughts about me correct? Probably not even close. Labels allow people to judge you without even getting to know you. I firmly believe that statement.
Now saying that, let me also say I have spent the last 4 years of my life looking for Quin’s label(s). I have spent hours on the internet looking for the label(s) that fit him. I have talked to countless doctors and asked them if XYZ label could be the one or if the ABC label was better fitting. I have kept journals looking for any sort of pattern that could provide a label. Why would I spend my time fighting to label for my child? Because in the special needs world, a label opens doors, a label brings about understanding, a label starts the journey to main-streaming life, a label can bring healing.
When we first brought Q home, at the advice of our pediatrician,we found a doctor that specialized in Autism and Developmental Delay. We immediately had him tested for Autism. We got the diagnosis that we expected but didn’t want. “His test results show him on the high functioning end of the spectrum.” Quin was labeled: Autistic. We were told that Q could also have RAD and that there isn’t too much out there on RAD but that in young children the symptoms of RAD often overlap that of Autism and as Q grows older, we will see which one he has. Quin’s autism diagnosis was written up in some official form and distributed to his school and doctors. His label was stuck to him like a name tag on left overs in the office refrigerator.
Honestly, there isn’t much treatment for autism. There is medication out there than can treat some of the behaviors and, as you know, we gave them a try. (Remember the medication roulette?) There is ABA therapy, which is a controversial topic in the autism world. Quite honestly, we decided not to go the ABA therapy route because we couldn’t afford it. Insurance didn’t cover it and they wanted $500 a week. Instead we opted for RAD therapy. We opted for this therapy for 2 reasons. 1) Because we could afford it & 2) To rule this diagnosis out and confirm the autism label. Our RAD therapist was downright amazing. She was honest. She was positive. She was loving. She was receptive. She was everything I needed her to be at that time. At the end of our time with her, 9 months later, she looked me dead in the eyes and said “Leah, Quin is not autistic. He has RAD.” He was labeled: RAD. I knew in my heart of hearts that she was right.
I truly don’t believe either of these diagnosis is better than the other. They’re both a label. They both have special needs attached to them. However, the more I read on RAD and studied RAD, I knew 100% that the autistic label was wrong. I went back to that original doctor and requested new official forms be written up before Q started Kindergarten. I insisted that he not start “big kid school” mis-labeled as that wouldn’t get him the therapy & services he needed. The doctor firmly disagreed and said “Not much is known about RAD, teachers and schools haven’t heard of it. If we leave the autism diagnosis on the paperwork, you are more likely to get the services you want him to have.”
I held my ground. I made my case why the autism label needed to be removed. I fought for that RAD label. Why did I care? Why did I want this RAD label so badly that I FOUGHT with a medical professional? Q was still Q no matter which label he carried, right? Honestly, it wasn’t about the label. It was about the therapies, medications, and treatment plans. While the symptoms may look similar, the treatment plans look totally different. I wanted Q to start “big kid school” off with an IEP team that fully understood the child at the center of it all. I wanted to make sure we were all working towards the same goal. The right goal.
Since getting that old label removed and a new one put on, Q has acquired another label: ADHD. At first, I was in denial. I was excusing his behavior as “oh that’s just the RAD showing.” or “Gosh, he is all boy!” but I went back to my trusty ol internet and read anything I could find on ADHD. I joined FB support groups and read the posts looking to see if I related to them. I listened to the new doctor who gave us the label. I finally let go of my denial and moved on towards not only accepting it but embracing it. Q was labeled: ADHD. Why did I resist this label? Why didn’t I trust a medical professional right off the bat? Why did I spend time in denial? Because this was another label on my child. Flat out. I just didn’t want him to wear anymore special needs labels.
Everybody just wants their kid to be labeled “Normal”. No mom wants their kid to be labeled the “weird kid” or the “special needs kid”. Some moms may want their kids to be labeled “popular” but overall I think we can all say we just want our kids to be seen as normal so that they are accepted by their peers. When we got that autism diagnosis, it was a gut punch. I was devastated. Not because I couldn’t see past the label. I knew I could. But could others? I just wanted him to be labeled “normal”.
Shortly thereafter, I decided that labels are wrong more often than not. In the world of special needs, it is no different. Besides, who can even define the “normal” label these days?
These labels will NOT define my child but they will HELP my child. These labels will not tell my son what he was capable of. Only Quin can determine what he is capable of. These labels will not confine him. The only thing that will confine Quin is his dreams. These labels will not be the end of the road. Q’s road may have a few bumps on it, but he’s still traveling.
These labels are not excuses. These labels are motivation.
4 thoughts on “Fighting For A Label”
wow…i love your determination to change your son label to make sure it fit with what was actually happening…as you said the doctors needed to know Q…it’s important for correctness so as to have better IEP plan…love your energy…keep pushing and questioning…awesome mom http://www.rethinkautismmom.blog on the journey with you!
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It’s a hard journey full of ups and downs but the community of loving and supporting parents in the thick of it too makes it so much better! Thank you for reaching out. I look forward to reading your blog!
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You are really a very smart woman. I’d love to know your I.Q. You are way smart. Life is tough. you just grit your teeth move ahead.
My grandson who is three has something call Apaxia . He can’t talk. He’s a smart normal young boy but somewhere between his brain and his mouth there is a disconnect.
My daughter is going thru somewhat the same thing as you but not as serious. Overall she’s happy with him, but also very sad. She spends a fortune taking him to speech
therapy. he’s making slow progress. I only mention this because I can relate to how you feel. She lives it every day. You know I Love you.
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I had no idea about your grandson! The cost of therapy adds up, for sure! I’ve never heard of Apaxia…looks like I’ll add that to my list of things to learn about!