Does My Daughter Have Autism? Do Labels Help or Hurt?

Mother And Daughter Sitting On Seat In Mall TogetherI took my twins to the mall last weekend so she could hunt for her latest fandom obsession plush and he could hunt for Pokemon. While in GameStop, one of our favorite stores, a noticed a young man in a bright blue shirt. I think I noticed him because he held his arms at an unusual angle. When I looked up at his handsome face I recognized some signs of autism. He was enjoying himself in the store when we left for our next destination. After a few other stops we were outside in a courtyard when the bright blue shirt walked by us again. He made eye contact with me so I smiled at him, and as I walked by he said, “Does she have autism?”

This question has plagued me since she was very young. I don’t care if she has autism, that’s not what I mean. It is nice to have a diagnosis sometimes; It helps you to understand things better and can guide treatment. My only concern was that I didn’t want her to struggle with additional challenges or labels.

As I looked at the handsome young face I had flashbacks.

During a procedure back when she was a tiny child battling severe GERD, she single-handedly fought off an entire surgical team and they had to call me into the OR to sing to her and calm her down. After she slipped under anesthesia her doctor told the team that she was autistic as an apology, and I got ticked at him – and let him know that – of course after he had safely completed the procedure.

During an assessment when she was a toddler she played happily at a toy box, totally ignoring the doctor as he asked her questions. I knew she would ace the test and he was marking her as if she didn’t have the required knowledge or skills so I went over and brought her onto my lap. Then I administered the test to her, and of course she blew through it with flying colors. The doctor was amazed and told me he was going to diagnose her with severe autism until he saw the reactions I got out of her.

In both of these instances I was horrified at the presumptions of the professionals (who were both very nice and very competent, btw). I mean, if I was a small child and strangers in gowns and masks were coming at me I would fight like hell, too – autism or no autism! And if I was a toddler and a strange man was asking me questions I didn’t really feel like answering I would probably find the toy box much more interesting and just ignore him, too!

While I sometimes wished for a diagnosis of autism because I thought it would get her additional services and therapies, the opposite turned out to be true. Recently we decided to try some behavioral therapy, and (GET THIS!) if she had a diagnosis of autism the therapy would not be paid for by the Regional Center, but since she does NOT have autism the therapy is provided. That seems completely backwards to me, but that is the structure of the system, at least where we live.

Back to the present moment outside the mall. The question seemed to be hanging in the air. “Does she have autism?” I looked from the young man to my daughter, who was hiding behind a pole with wide eyes beside her twin brother. I felt like she was waiting for the answer as much as he was. I finally found my voice.

“No, she doesn’t. She has something else. Do you?”

“Yes, I do.” I loved that he wasn’t ashamed or embarrassed of himself! I asked where he went to school, but he had graduated. I told him I worked in a high school with kids with autism and I asked what he was going to do after school. He said he wanted to get a job. I asked him where he wanted to work and he had a few places in mind. He was very tall and had a deep voice but after I got him talking he seemed much younger than a high school graduate. After a few moments of chatting I wished him luck and we waved goodbye.

My twins don’t understand how I can talk to just anybody. “But do you know him?” they kept asking me. I shrugged and told them that I know him now.

I keep wondering why he picked my child out of a crowded store. Was it her mannerisms? Her speech pattern? Was it just a coincidence that we ran into him again outside, or had he followed us? I considered my child, who despite her youngish pink tutu skirt and sequined ice cream cone shirt looks more and more like a young woman every day. The young man and my daughter had a lot in common. Maybe I had met my future son in law. That had better be FAR in the future son in law.

Do you or someone you know have a special needs child? Have “labels” helped or hurt?

About the Author

Rosie Reeves is a writer and mother of three; including one with special needs. She works side-by-side with her daughter’s therapists, teachers and doctors. Rosie has also served as the Los Angeles Special Needs Kids Examiner. She can be reached at Rosie is a member of the PedSafe Expert team


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