Meet my daughter: Smart, funny, beautiful and among the 1 in 44

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Hi! My name is Emily Reily and I’d like to introduce you to my daughter, Sarah. She has lots of the same interests as other kids her age. She’s working on a Peeps diorama for an upcoming library contest. An 11-year-old middle-school kid, Sarah reads comic books, loves to sketch scenes with stick people, watches Harry Potter movies, and pets her cats daily. She loves bacon pizza, calling her friends on the phone and putting together Legos.

Just from talking with her, you might not be able to tell that anything is different. You might think she’s just very shy and quiet, or would rather be by herself. This could be true, but there’s also a fun, happy, content person in there, with a lot of the same wishes and dreams as everyone else.  

My daughter has autism spectrum disorder, or ASD, what used to be known as Asperger’s. It’s a group of neurodevelopmental issues which can cause social and communication challenges and affect all aspects of a person’s life.

Her doctor determined she has “high-functioning,” autism, though that’s a complex misnomer when discussing the broad range of issues those with ASD struggle with – hence, the “spectrum.” There are others with ASD who are more profoundly affected than my daughter. Every parent and child’s journey is unique.

The title of this column, “One In 44,” refers to the CDC’s estimates that one in 44 eight-year-olds have been diagnosed with autism spectrum disorder, and its prevalence is accelerating. For example, just 10 years ago, it was 1 in 69; in 2004, it was 1 in 125. Are more parents recognizing the signs, are doctors becoming better listeners, or is it something else?

Some hallmarks of ASD are part of Sarah’s personality. She often watches the same movies or reads the same books multiple times. To calm anxieties, she’ll continuously rock in a rocking chair until she feels better, or sit under a blanket to shut out the busy world. Lining things up, counting things, using a fidget cube or holding her favorite stuffie help too.

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The process of creating a “line-up” can help calm anxieties. Photo/Emily Reily

Raising her has been anything but typical. We need checklists and routines in order to make it through the day successfully. We’re hypersensitive to external factors like noise, crowds, and extra stimuli. Daily routines are more rigid and choices are limited; unannounced changes can cause upheaval.

To decipher a meltdown or perplexing behavior, I often frantically backtrack to what her day was like up to that point. Using basic communication skills becomes a complicated process of breaking down a seemingly simple conversation, piece by piece.

We may never get to the heart of why she’s upset about something. Life just moves too fast. All we can do is move on, get some rest, and try again tomorrow.

Despite so many unanswered questions, there’s constant research and conversation around autism. The word “neurodiversity,” the more accepted term for those with ASD, ADHD, and other neurodevelopmental disorders, has gained traction in the mainstream. Throughout our journey, I’ve become familiar with the Zones of Regulation, stimming, food jags, social/pragmatic language, sensory processing disorder, and social stories. I’ve learned how to make her laugh and when to leave her alone, though I’m not always successful at recognizing when she needs one or the other.

Sarah attends regular classes with her peers and regular sessions to improve her communication and speech skills. We’re so grateful to have dedicated therapists who advocate for her at meetings about her school education plan.

But with all of the advances that science and research have made into ASD, it still surprises me that autism is so misunderstood.

For a long time, people with autism were sent away to institutions simply because caregivers didn’t know what else to do. People with autism were considered stupid or mentally challenged. Sometimes parents are blamed for a child’s unusual behavior. Some think autism is caused by something the mother did while pregnant.

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One-eyed stick figure: I remember the doctor who diagnosed Sarah with autism saying drawings missing body parts was notable. Photo/Emily Reily

There are supports for people with ASD in New Hampshire, but it’s not without faults. Services are expensive, often not covered by insurance, and in high demand. They can often be difficult to find.

I am forever grateful for the chance to be in Sarah’s life. I know the future holds good days and bad days, but I believe the former outweighs the latter. My daughter is smart and funny, loves to be active, and can remember details we’ve long forgotten. She has a core group of friends who share her interests. I’m happy to help however I can, read her stories, shop for clothes with her (sometimes with mixed results!), teach her how to cook and have fun just goofing off.

Just like lots of parents, I want her to go to college, find a job, be successful, and maybe have a family – if that’s what she wants.

I decided to write this column to help bring awareness about autism, to share stories and information, to hopefully dispel some common myths, and to be a mini support system for friends, family and caregivers of someone with ASD.

Maybe this column will help others think a bit more about the condition, or maybe it will reach parents who have been told their child is “fine,” yet deep down they know different. Here’s one constant I’ve learned and want to share: It’s okay to speak out and advocate for your child.

I would love to hear from others who want to share stories about living with autism. Readers can also reach out with questions. I hope to continue to learn and understand more about the condition as I, and my daughter, grow. Thank you for reading!


Autism word of the dayStimming. Stimming is simply repetitive actions someone does to reduce stress or anxiety, or just because they like to. It can be rocking in place, hand-flapping, counting, touching certain materials, head-banging or other movements, or even sounds. It’s a great way to self-regulate, and often shouldn’t be discouraged unless it might harm someone. When our daughter hand-flaps, it means she’s really excited and happy about something!


 You can reach me at ereilyboyd@gmail.com.


 

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About this Author

Emily Reily

Emily Reily is a freelance journalist based in Dover who writes music and entertainment features and the occasional news story. After working for several years as a newspaper photojournalist in NH, she decided to try writing and editing. If she’s not at her makeshift desk, she’s in the greenhouse tending to her micro garden or listening to music with the volume on 11. She’s contributed to MTV News, Riot Fest, the New York Times’ Kids section, Washington Post magazine, Mental Floss, Bandcamp and a few other places. She urges you to subscribe to a newspaper.