Voices of Autism: ‘Labeled As the Bad Kid’

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Jen Troester, mother of Katie, 7, and author of the blog Living Life With a Side of Autism:

My daughter Katie is 7 and has autism. Her diagnosis came later than most, when she was almost 6 years old. For years the “red flags” we saw were either brushed aside or laughed off as diva behavior.

I had a baby that never babbled, never “told stories.” A child who ignored her toys and sat this close to the TV, rocking back and forth, to the same DVD over and over. While all the little girls in our playgroup were singing songs at 18 months old, Katie didn’t even have a handful of words. She didn’t parrot anything we said, didn’t point, didn’t respond to her name, and didn’t parallel play. If all the other toddlers were in a group, she was off in the corner, alone.

Katie started Early Intervention at 18 months for a severe expressive/receptive speech delay. At the time she was on the level of an 8-month-old. I remember when she was close to 2 years old, I got excited that she had finally said the word dog. After the excitement wore off, the pain of how far behind she was came flooding in.

Over the years, we visited several doctors and specialists, trying to figure out what was going on with our child. We kept getting the label of “developmentally delayed,” but what did that even mean? Was she going to outgrow this? Was there an underlying cause? What did the future hold?

When she entered preschool she began being labeled as “the bad kid.” The drama queen. She had intense meltdowns, and her lack of communication skills didn’t help. She never had a good day. Her teacher said she was a difficult child, and she was put in timeout every day. They even told her she wasn’t welcome in the classroom because of how she behaved–at 3 years old, and essentially non-verbal.

 I watched as Katie aged out of preschool and into kindergarten, and how quickly things went downhill. I finally found a developmental pediatrician, and then a speech therapist, who tested Katie and handed down the diagnosis of autism. Only then did the school offer my child the help she so desperately needed.

I believe that had Katie been a boy, she would have received a diagnosis earlier. Lining up dolls and stuffed animals doesn’t stick out as much as lining up cars. Rage-fueled meltdowns are looked at as dramatic, and not as a red flag. Having social deficits is looked at as just being shy. Most people still see autism as a disorder that affects boys. If a girl doesn’t present in exactly the same way, she is often overlooked.

I am glad I fought so hard for my child. She is finally getting the help she needs, and is slowly making progress. We still struggle a lot, though, and autism has affected our lives mentally, emotionally, and financially, beyond measure. My one hope is that by sharing our story we can help other families not suffer the same way.  

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by Spectrummy Mummy

    On April 29, 2011 at 9:24 am

    There definitely need to be more research into girls with autism spectrum disorders. Looking back now, I can’t believe the pediatrician dismissed my concerns so abruptly. I’m hoping this is changing as more of share our stories.

    So glad your girl is finally getting the help she needs. I hope for continued success for your family.

  2. by Lynn

    On April 29, 2011 at 10:09 am

    The gender stuff is infuriating. Rarely is a boy described as being “dramatic” and I’m pretty sure that they are never called a “diva”. Glad to finally see you out here on GoodyBlog…they saved the best for 2nd to the last!

  3. by Alysia

    On April 29, 2011 at 10:33 am

    Jen – so glad you shared your story here. I’m sorry your concerns were dismissed for so long, but I’m glad you stuck with her and got your beautiful young lady the help she needs.

  4. by Barbara Manatee

    On April 29, 2011 at 8:57 pm

    I always get so frustrated when people say that the rate of Autism is rising due to it being over/mis-diagnosed – yet there are too many stories out there of people not getting the diagnosis they need for that to be true. I am so sorry it took so long for someone to really listen to your concerns for your daughter but I’m glad she is now getting the help she – and you – need!

    I’m a teacher for Autism. I’ve been blogging all month for Autism Awareness Month.

  5. by Big Daddy

    On May 4, 2011 at 10:46 pm

    Good job Jen. Love the pic.