Every Month is Autism Awareness Month When You Parent a Child with Autism Spectrum Disorder

April has been designated as Autism Awareness Month. From blue lights to puzzle pieces, public initiatives and events ensure more people than ever know about autism. Awareness also can be attributed to increased incidence. For decades, the best estimate for the prevalence of autism was 4 to 5 per 10,000 children. Today, the CDC reports one in 59 children nationally is affected. My child is one of them.

His diagnoses have changed and compounded over the years. In 2013, with the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), all things autism, including PDD-NOS and Asperger syndrome, were reclassified and streamlined under the label autism spectrum disorder (ASD). Simply think of it as autism 2.0 — many of the same features, with a streamlined new name.

My son was born on his due date after an uneventful and easy pregnancy. During that first year, he was diagnosed with infant torticollis and hypotonia (low muscle tone). He didn’t wave. He began to crawl and walk later than considered “normal”. Our pediatrician said he would do those things when he was ready, so we waited.

My son began to exhibit some atypical behaviors. When he became excited, his body would go rigid. He would flap his hands and have a grimace on his face. Sometimes a random vocalization would accompany the grimace.

By age two, he had less than 10 words in his vocabulary. He wasn’t combining two words. He was far behind where his sister had been at that age. Well meaning people would tell me, “Girls develop faster than boys. He’ll talk when he’s ready. You worry too much.” My gut told me otherwise.

Trust your parental instincts

As a parent, I’ve learned to trust my instincts. No one knows my children better than I do. When I confided my fears to my husband, he confessed his own worries. That’s when we jumped into an entirely new world filled with therapists and child development specialists. From genetics to neurology, we’ve been there and tested that.

My son is now 14 years old. He has an individualized education plan (IEP) and receives special education support through our public school system. He’s full inclusion, which means he’s in the classroom with both “typical” and other ASD students. He has an intervention specialist in addition to his classroom teachers. He’s both an honor student and kind of a behavioral nightmare. He can do accelerated math but can’t tie his own shoes. He’s an emotionally immature boy housed in a man’s body (5’10”, 185 pounds and growing). He’s quirky and creative. He’s stubborn and funny.

When people ask me what it’s like to parent a child with autism, I feel they often have a preconceived notion that all people with ASD are Rain Man, Temple Grandin or Sheldon Cooper. My response to that is simple. When you’ve met a person with autism, you’ve met one person with autism. Every person is unique, period.

Would I wish for a child without ASD? That’s a tricky question. While I wouldn’t trade who he is, I would trade the challenges he’s faced, and those he will face. I worry about his future. Will he remain dependent on us? Will he ever have a “normal” life? Those questions keep me awake some nights, and then I remember where we started, and how far we’ve come.

Tips I’ve learned along the way

Here are some things I’ve learned over the years that may be useful for you.

1. Don’t ignore your gut feelings. If you suspect that your child is not on track developmentally, or you think your child may need to be evaluated by a specialist, don’t hesitate to ask for a referral from your pediatrician.
2. Always look for open doors. It took three different psychological work-ups to get an “official” diagnosis for my son. Now we have more diagnoses than we could ever have asked for, which brings me to my next piece of advice.
3. Try to maintain a sense of humor. This has served us well over the years. From helping my son de-escalate in times of high stress to smoothing over disagreements with my spouse, try to find levity in the moment whenever you can.
4. Give yourself a break. You can’t be everything to everyone. Don’t feel guilty if you need to back out of a commitment because your child is having a bad day. Take some time for yourself when you can. You know what you and your child can handle. Don’t let anyone else try to set those limits for you.
5. Find your outlet. Whether it’s volunteering, journaling or exercising, finding a way to vent your stress will help you be a better parent in the long run. Modeling this behavior also can help your child learn ways to manage their stress and anxiety.

Build your support network

Surround yourself with positive people who support you and your child. This can include teachers, therapists, friends and other parents. Find people you can trust to share your worst fears and feelings, people who will lift you when you feel at your lowest. I have my own group of IEP moms. We message each other before IEP meetings and share messages of support and love. Social media can been a great resource to find support systems.

Organizations like SAFY are skilled at connecting families with the support they need. They offer behavioral health services and more for children and foster children to build lifelong skills and help stabilize mental and emotional well-being.