Enjoy the journey: Advice from one autism parent to another

By Kimberly Stiegel, CHOC Autism Spectrum Disorder (ASD) mom

I have two children — Marya, age 21, and Jackson, age 19 — who are severely impacted by ASD. They both have received treatment from the Thompson Autism and Neurodevelopmental Center at CHOC, which has been a gift. The expert care they have received has been instrumental in helping them become functioning, wonderful young adults who are a true delight to be around.

I have been an ASD mom for over 20 years, and I have learned a lot. Receiving an autism diagnosis can be overwhelming and devastating for some families, and the journey can be challenging, but also wonderful.

Here are some lessons I’ve learned throughout my family’s ASD journey that I hope can be encouraging for other families:  

Make yourself an expert on ASD

I devote a couple of hours a week to reading about ASD research, advancements and therapies — the disease is progressing, and I like to stay up to date. Even after 20 years, I am still learning new things about autism! I’ll often bring up what I learn with our family’s care team to get their opinions and bounce ideas off them.

I think it’s important, though, to remember that the learning process is a marathon, not a sprint. If your family just received a diagnosis and needs some space to process it, allow that for yourselves. Then, once you’re ready, ask questions and learn all you can about your child’s autism.

Admire your child with ASD

When you first receive your child’s autism diagnosis, it’s common to be shocked and to grieve the expectations you had for your child. Some may view it like it’s the end of the world.

I would encourage parents to try to move past this viewpoint, not only for their own happiness and life, but more importantly, for their child. If a parent feels that their child is somehow “broken” or “wounded,” the child may pick up on that emotion and believe it themselves.

Parents should respect and admire ASD kids, just as they respect and admire neurotypical (someone who does not have autism or a neurodevelopment disorder) ones.

Keep your child with ASD engaged

Once parents can process and move forward from the initial shock of an ASD diagnosis, they should make sure to engage with their ASD child.

Sometimes, children with ASD may retreat, or go off into their own little worlds. It’s important to keep them engaged in this world.  

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My daughter attends a school for autistic kids. She’s engaged in classes for eight hours a day, five days a week. The school is less concerned with academics, and more concerned with engaging the kids daily. The consistent engagement has extremely helped her functioning.    

Enjoy the journey

Although my family’s journey with ASD has been challenging at times, overall, it’s been wonderful. My kids have achieved so many little victories and celebrating them never gets old.  

For other ASD families, I would encourage them to try to enjoy their journey and remember to find the humor in it. My kids have given me wonderful memories and stories that can make me cry laughing; we are all happy and we have a great life.

Over the years, I realized that I would rather have severely impacted autistic children that are happy, than unhappy children. Once I discovered that, I was able to see joy throughout the whole journey — diagnoses, medications, treatments and all.

I’m so glad that my kids were able to teach me that lesson.

Set ambitious expectations for your child with ASD

Some families may feel the tendency to not ask too much of their child with autism and to depend on other neurotypical siblings to help them. I say: set ambitious expectations for your kids and let them rise to the occasion.

My son, who is non-verbal, can say “please” and “thank you” because that’s what I expect from him. If families can lean into their child’s abilities and challenge them, they can accomplish more than expected.

Celebrate the unique gifts of kids with ASD

Autistic children (and adults) are special. They are gifted in unique ways — some have incredible memories, some have amazing senses of humor and some are extremely intelligent — and they are all wonderful. My son has a special ability to sense someone’s emotions from across the room.

It’s my hope, that as a culture, we will not only accept kids and adults with autism but allow them to release their special skills and abilities. It is my hope that autistic kids won’t be stared at or misunderstood but celebrated for who they are.

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