The Challenges and Joys of Raising Children on the Autism Spectrum:
A Caregiver's Perspective
Q&A with Donna Richards

Jace and Justin Richards
Photo Courtesy: Donna Richards

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Donna Richards is the mother of five sons. Two have been diagnosed with autism spectrum disorder – Justin with more severe autism and Jace with Asperger syndrome (or high-functioning autism). Chef Justin graduated from culinary school and Jace is a Marine. Her family experienced the devastating loss of one of these five sons, John Michael, in 2013.

Donna has been immersed in the autism world politically, professionally and personally since 2001. She has worked as an autism IEP liaison for ten years and with a program helping to prepare teens for the workforce. My Brother’s Keeper: A Kindergartener’s View of Autism (MBK Publishing, LLC, 2005), written from Jace’s perspective, takes a look at the simultaneously fragile and strong bond between autistic children and their siblings. Her boys were featured in Woman’s World in October 2007 and appeared on national television with Tony Robbins.

The family’s blog, Autism Family Circus, addresses behaviors, milestones, and the family dynamic. Today, Donna and her husband, John, are working on a guide for parents.

Donna with her husband, John
Photo Courtesy: Donna Richards

Donna was asked the following questions about her experiences raising a large family with two children on the autism spectrum.

Justin (left) and Jace
Photo Courtesy: Donna Richards

Parents with children on the spectrum worry about the transition to adulthood. What struggles did Justin and Jace have?

The transition to adulthood is hard for any teen, but it is especially hard for those with autism.

Our son with high-functioning autism had fewer problems and eventually became a Marine. He has always thrived on order and routine.

​Justin, our son who has more severe autism, has more challenges. He is 22 years old and has not learned to drive yet. We are working on independence and trying to improve his daily life skills. He struggles with the concept of money and an understanding of the value of things. For example, he once purchased a book for $35, but he gave the clerk a $100 bill and told her to keep the change. Luckily, she was extremely nice and gave him the money back. One of Justin's huge successes was graduating from Auguste Escoffier Culinary School last year.  

In your opinion, what is the most important life skill for someone on the spectrum?
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I feel like the most important life skill is being able to communicate. Even if someone is nonverbal, it’s important to find a way to communicate. There are many devices available today that help with this. Developing organizational skills was a challenge for both Jace and Justin. It is still something that they need to work on every day. 

With three neurotypical boys and two on the spectrum, how did you manage the family dynamic? Was it difficult to juggle the needs of children with such diverse challenges?
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Having five children is a lot like nailing Jell-O to a tree. Even if all my children were neurotypical, it would still have been a full-time job. Our extended family members used to say that we ran our farm and our children like drill sergeants, but when you have a large family, you have to be super organized. Our oldest son was already ten years old when Justin was born. When he got older, he could drive and help out with extracurricular activities.
 
There was never resentment among the other three boys for their brothers who needed extra help. They all pitched in and worked together.

My mother-in-law told me a long time ago that I would always love all of my children, but it is okay to love them differently. Each one is an individual with their own personality.   

Richards Family (L to R):
John Michael (bottom left), Justin, John, Jace, Joey, Donna and Dylan
Photo Courtesy: Donna Richards

​What was the most difficult thing you had to face as a family?
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We are a large, blended family. Of course, there were difficulties along the way. But in 2013, we lost our 17-year-old son, John Michael, to Crohn’s disease. That was the hardest thing that our family has ever been through. Ten years later, we are still learning to adapt.

​What gave you the most joy in raising your children?

My husband and I tried to enjoy every day of raising our children. We knew that the days would go slow, but the years would go fast. I think our greatest gift to the world is the children we have raised – two are in the Army, one is a Marine (John Michael would have also been a Marine), and one is a professional chef. They love God, their country, and their family. They are kindhearted and protective of the weak and underprivileged. We are so proud of them.

Please share a piece of advice you’d like to offer parents who are raising children on the spectrum and are finding it hard manage other responsibilities due to the focus on their child’s challenges.
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The one piece of advice I can give about raising a special-needs child is to maintain discipline. Children are children, no matter what their abilities are. We always expected just as much from Justin as we did our other children. In the long run, it paid off.

Where do you find sanctuary?
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I have always found my sanctuary and quiet time in the early morning hours. I used to wake up an hour before everyone else, so I could start my day with peace, quiet and order. It’s great if I can manage a 30-minute walk, too. This seems to set the tone for the day. I also enjoy journaling, and I map out each day before I go to bed. This way, when I wake up, I know what I have to do. I write down the three most important things to get done the next day and the three things I’m the most grateful for. This really keeps me on track. 

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