Autism Awareness Month: 7 Insights from a Parent

This April marks a year since we received our younger daughter’s autism diagnosis. A few months later, the same team of specialists diagnosed our older daughter with autism. Several friends with children on the spectrum guided me through the first few months after the diagnoses. I was grateful for their help and advice. So as our nation celebrates Autism Awareness Month, I’ll share our family’s journey with autism as a way of paying it forward.

The Autism Society describes Autism Spectrum Disorder (ASD) as a “complex developmental disability, typically appearing during childhood and affecting a person’s ability to communicate and interact with others.” This means an individual with autism may have language delays, repetitive behaviors like rocking or hand flapping, or difficulty making eye contact, among many other behaviors associated with the disability. The CDC estimates 1 in 68 children—1 in 42 boys and 1 in 189 girls—are on the autism spectrum.

The good news is, early diagnosis and therapeutic services can improve the quality of life for children on the spectrum. The tough news is, there’s currently no cure for autism so the symptoms my daughters experience may last throughout their lives. During the ups and downs of the last year, here are seven  things I’ve learned about autism.

  1. “If you’ve met one person with autism, you’ve met one person with autism.” After our daughters’ diagnoses, I read this quote by Dr. Stephen Shore. The autism spectrum is just that—a range of symptoms and behaviors. Our daughters are verbal, make eye contact (generally), and play creatively. When it comes to symptoms, our daughters are fairly different. Our older daughter is sensitive to certain smells and textures, doesn’t like to be touched, often struggles with new social situations and friendships, and is rarely aggressive.  Her younger sister reacts strongly to loud noises and bright lights, can hit or bite when scared, has trouble adapting to changes in routine, and repeats phrases when she’s overwhelmed. Like our daughters, each individual with autism in unique. The CDC has good information on signs and symptoms across the spectrum.
  2. It’s considerate and respectful to use people-first language. Focusing on the person first and the diagnosis or disability second places more emphasis on the individual as a valued member of our society. Rather than refer to a child as autistic, many (though not all) in the autism community prefer to instead say child with autism.
  3. “I am different, not less.” This quote is from Dr. Temple Grandin, an adult with autism and a leading animal science expert. Nonverbal until she was three, she eventually found a successful career based on her ability to see patterns. Using her strengths, she develops unique designs for livestock equipment. While an autism diagnosis can bring helpful resources to set a child on a supportive path, it can also bring labels that might be limiting or damaging. For our daughters, we do our best to try to talk to them like we did before the diagnosis. We say “you can do anything you work toward.” Their futures may be uncertain, but we hope our daughters will be able to have strong relationships and fulfilling careers.
  4. Books can only take you so far. I lost count of the number of books I’ve read on autism. Some were helpful, a few were confusing, and others were downright maddening. At a certain point, I needed to talk to other parents. I joined a support group and discovered an incredibly kind and compassionate network of parents ready to offer advice or a listening ear. I now have close friends in that group. When we meet, it’s a relief to talk to parents who just get it—how much we care for our kids, the exhaustion from daily struggles, and the exhilaration of reaching milestones that seemed so distant.
  5. Caregiver fatigue is real. I can’t think of any parent who isn’t legitimately tired. But for caregivers of children on the autism spectrum, the level of exhaustion can be serious and chronic. The daily tension of anticipating or preventing sensory meltdowns, frequent calls to and from school or therapy providers, multiple weekly therapy appointments, extensive paperwork, and regular doctor visits for medication checks are just a few reasons for my fatigue.  Breaks are rare, but necessary. I’m incredibly appreciative of the talented professionals who help our daughters, my patient husband, and our supportive extended family who help us take a vacation to recharge.
  6. Autism may be invisible, but the associated behaviors aren’t. There are no physical characteristics that set individuals with autism apart from other people. My daughters look typical, but can act in atypical ways—like loud screeching at a mall, throwing shoes while waiting in line, or rocking back and forth with ears covered in a loud restaurant. In that moment when strangers may be silently or overtly judging my parenting, I struggle to ignore insensitive comments or looks. This is why autism awareness is important. Shining a light on invisible disabilities can help build empathy and understanding. Watch this video from Australia on the importance of accepting difference. Elaine Hall from The Miracle Project explains, “It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.”
  1. Pink looks different than blue on the spectrum. A majority of autism research has centered on boys. That means many of the early signs of autism—not making eye contact, withdrawing from touch, no spoken words—may be more indicative of boys than girls on the spectrum. Diagnostic tools based on boys with the disorder can lead to late or misdiagnoses in girls. Recent research on girls with autism indicate higher levels of social interaction, fewer rigid interests, and less obvious behavior problems. I can personally share that these differences likely contributed to our daughters’ relatively late diagnoses at ages six and eight, rather than the average age of four. When we have more research on girls, we can develop better diagnostic tools. And when both boys and girls are diagnosed earlier, they can receive therapies that may reduce the severity or costs of the disorder over a lifetime.

A year into our family’s journey with autism, I can share that while I know more than I did,  I still have a lot more to learn. Together, we’ve accomplished a lot. We now have several physicians and therapists we know and trust, a small circle of friends in the autism community, and better tools to manage confusing social expectations. I want to emphasize that while autism challenges our family, our lives are far from bleak. We love our daughters unconditionally and they bring us joy in their own quirky ways. Thank you for reading about our family and learning more about autism. It’s certainly a complex disorder with rapidly evolving research findings. If you would like to learn more, consider these resources:

The Autism Society of America

Center for Disease Control evidence based information on autism

The Center for the Study of Autism

Feel free to reach out to me if you would like to know more about our family’s experience with autism. And if you know a family with autism, consider asking the parents if they need a break, help with home repairs, or even a listening ear–a little empathy can have an enormous difference.

 

 

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One thought on “Autism Awareness Month: 7 Insights from a Parent

  1. As always you write from the heart Amy. Your father and I are also beside you on this journey remember you are not alone one and they we also loves those girls and get so much joy from them. Mom and dad

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