Labeled with Autism: Is it Really a Death Sentence?
In a Society Where the Rate of Children Diagnosed with Autism is Climbing, What Does Having the Label Truly Mean?
When I was in high school my mother gave birth to a son. She suffered from diabetes during her pregnancy and had a difficult time delivering. When he arrived, he appeared to be healthy with no other complications. However, my mother soon realized something was wrong. Around his first birthday he stopped responding when his name was called. Although his speech had been progressing normally, suddenly he seemed to have lost all of the words he had learned. At the doctor's office, when my brother was just 14 months old, his physician was sure of the prognosis - autism.
The road ahead was to be a long and trying one. By the time he was 18 months old, the state had supplied him with therapists to help him progress. I often sat in the kitchen with my mother comforting her cries as he screamed in the living with them. Early intervention is a key factor in helping a child diagnosed with an autistic spectrum disorder. The more time spent in denial or dragging your feet, the harder it becomes to change behaviors and teach new skills to these children.
By the time my brother was 2 and a half years old, he went on a school bus to go to a specialized program. At first my mother followed the bus to the school and sat outside crying as she wait in the car. As time passed, however, my mother realized that the word autism was just a label, a word. It was not a predictor of my brother's future. She began to educate herself and quickly learned that there was a wide range of severity in the autistic field.
Time passed. My brother's annual review came up and it was time for a re-evaluation. At three years old he was now labeled PDD-NOS. When he was four years old I remember showing him a picture of a mummy in a tomb. I labeled the parts of the photos for him, from the mummy to the coffin. He turned to me and said, "That's not a coffin - that's a sarcophagus!" Could this be the same little boy who just a few years ago would hum and bounce unresponsively all day long?
Time continued to pass. I graduated college and began work as a teacher in a program specializing in Applied Behavior Analysis, a proven treatment for modifying behaviors of autism. I worked intensely with preschool aged children diagnosed with autism. Most parents didn't realize that it was their determination and strength that helped their child succeed. It was the belief they shared with the other teachers and myself that there was something more inside of their child than what was immediately visible. It was the confidence that the diagnosis was not going to stop them from reaching into themselves for the courage needed to exist with the elephant in the room known as autism.
By the time my brother reached 12 years old his diagnosis changed again, to Asperger's Syndrome. My mother couldn't care less. What does a label mean? That depends on whom you ask.
Published by Michelle Smith
A native New Yorker who writes about anything whenever the mood strikes. View profile
- Encouragement for Parents of Children Newly Diagnosed with AutismIf you have a child who was recently diagnosed on the autism spectrum, you may be feeling discouraged, isolated or overwhelmed. You're not alone! Find encouragement and helpful suggestions from a mom who's been there.
- What to Do First when Your Child Has Been Diagnosed with Autism Think positive and never give up! What you do now to help your child with autism will make a difference.
- Your Child Has Just Been Diagnosed with Autism, What Do You Do Now?Doctors often approach a diagonisis of autism like they do a terminal illness. Parents leave the doctors office with many questions and a sense of disparity. What is Autism? Was it something I did? What do we do now?
- What to Do When Your Child is Diagnosed with AutismIt can be scary when your child is diagnosed with autism. Take some time to process your own emotions, educate yourself with accurate information and appreciate the uniqueness of your child's personality.
- Using Applied Behavior Analysis to Eliminate Autism's More Challenging BehaviorsUsing ABA to assist the Autistic child to learn and face the challenges of the disorder.
- Applied Behavior Analysis (ABA): A Learning Approach for Autistic Spectrum/PDD Chi...
- Managing Mechanisms for Autistic Caregivers
- Vitamin Therapy for Autism: Can Vitamin B6 and Magnesium Cure Autism Spectrum Diso...
- Support for Families with Autistic Spectrum Disorders
- Why Jessica Seinfeld's Controversial New Cookbook is Great for Autistic Kids
- What Applied Behavior Analysis Is
- What to Avoid Saying to the Parents of a Child Newly Diagnosed with Autism
- A diagnosis of autism is no a "death sentence".
- Children diagnosed with an autistic spectrum disorder can change and make progress.
- We are who we are - don't let a word hold power of your child's limitations.


5 Comments
Post a CommentVery good article! My friend's have a little girl whow as diagnosed with autism as a toddler. They have exhaustively worked with her (she even quit her job to stay home) and began using supplements, etc. They eliminated several things from her diet (gluten is one I remember) and do you know that their daughter just started kindergarten and is completely normal now? She has been re-evaluated and they cannot even label her as autistic anymore! It has been an amazing labor of love but my friends have succeeded. There is so much about autism that still is not pursued and it is a shame.
This is a wonderful article. Thank you for writing it!
I agree with you, Rebecca. My oldest brother is autistic and a lot of what you described is what we went through as a family as well. My Mum was also deeply affected by both of my brothers' disabilities (my other brother has learning disabilities). I remember during one of my brother's reviews telling the "professional" know what I thought of his labels. He saw my brother as a text book case without knowing anything about his past. That really got to me.
Sophie
It can also be quite difficult when your child acts out in public and everyone turns to stare. I can remember all the times people sneered or commented to my mother and I when my brother was throwing a tantrum on the floor of a store. It's important for the parents to get the help they need, as well, both mentally and physically.
It is not really easy when you will be diagnosed with autism and the community will start labeling you and it is not also easy to manage and survive. I know because I have a son who is diagnosed in this spectrum. It can hurt you a lot to see your child trying to belong and yet people just do not know how to accept him.