Autism and Step-parenting

Part 5 in our series on Autism and Family Life

If you are a stepparent, you know how challenging it can be to assume that role in a child’s life. Even if you and your spouse dated for a long while, marrying and combining households isn’t always as warm and fuzzy as Mike and Carol of The Brady Bunch made it look.

The “packaged deal” brings so much to the marriage including a child or children, an ex-spouse or two, in-laws, and all that kitchenware.

If you’ve not had children yourself and are becoming a parent for the first time, there’s a steep learning curve as you find your way on the parenting path.

Take all of this – and add autism – and you have quite an adjustment for all concerned.

Parents of kids with autism are often heard to say that “I have no choice” when praised by others for the tough job they have.

What about parents who DO have a choice?

I’m talking about stepparents who have chosen to become parents of a child with autism.

Once again, I couldn’t find any research on the topic so we turned to our local experts – stepparents of children with autism.

How long have you been a stepparent of a child with autism?

Parent responses: ranged from one to five years

How much did you know about autism before you met your spouse?

Parent Responses:

• Not a thing.
• I’d heard the word.
• I had worked with kids with autism prior to meeting my new family.

In retrospect, do you think you knew what you were taking on when you became a stepparent of a child with autism?

Parent responses:

• Of course not! I had no children of my own so becoming a parent in the first place was a novel experience but adding autism to equation made it more so. It’s a shift in perspective to have kids at the center of your personal universe. As a teacher, kids are at the center of my work universe.  There was a steep learning curve for autism and more specifically my wife’s child with autism.
• No, I didn’t entirely know. I knew it would not be easy, but I was willing to take it on.

What is the most challenging aspect of step-parenting for you?

Parent Responses:

• Not knowing what the future holds for her – what will happen to her after we’re gone. Having a hard time figuring out what’s distressing her and how to make her feel better. Having to figure out and guess what is best for her all the time. When it’s your own child – it seems you’re gifted with this precious being and there is a natural bond. Maybe that is an assumption on my part. As a stepparent, that bond was built over time. I remember when I was getting to know her and she was upset and crying. I gently approached her and touched her foot as her mom had told me she likes massage and pressure when she’s upset. She’s nonverbal so I wasn’t sure if I’d know to stop or continue. I stopped and she took my hand and placed it back on her foot. “Do it again” she seemed to be telling me. That was a big moment.
• Getting professionals (school staff, therapists) to view me in a parent role and include me in communication.
• Knowing where the boundaries are. I have good intentions, but sometimes decisions are best deferred to mom.

What have you learned, gained from step-parenting a child with autism?

Parent Responses:

• “I am still learning”, said Michelangelo. I have more patience in my work as a teacher. I now help my colleagues when it comes to kids with behavioral challenges. I used to see challenging behavior as more intentional than due to some underlying issue. I’d deal with the immediate behavior. I didn’t think beyond the behavior to why.
• I’m less judgmental about parents than I used to be.
• Patience!
• The ability to look at the bigger picture.
• To shift priorities

If you were asked for a few tips for someone new to step-parenting a child with autism, what would they be?

Parent Responses:

• Be open-minded, honest about what you feel and think and don’t know. Know that you will make mistakes. Remember that you need to take care of you too. And keep your marriage healthy and strong. Keep your hobbies and interests -you might not have as much time as you used to but don’t give them up. Your spouse doesn’t need a martyr -she needs a partner.
• Open up your schedule. Do not confine yourself to just your plans.
• Be open-minded to your spouse’s views and more accepting of things outside of your control.
• Don’t take it personally if behavior by the child is directed at you.
• Don’t hold your spouse accountable for the child’s actions.

What else would you like us to know about step-parenting a child with autism?

Parent responses:

• My life is fuller, richer and more meaningful with her in it. It is both empowering and humbling to realize strengths and skills you never knew you had and also to realize that no matter how much you learn there is still much you don’t know. And it is the hardest thing I’ve ever done in terms of the sheer vigilance required for a child who needs 24-hour attention. It’s hard as well getting to a place where I know for sure that we will all be okay because we’re all doing the best we can.
• You need to have a big heart and understand that nothing goes as planned.
• Stick to routines as much as possible.
• Don’t give up!
• Communicate with your spouse.

We’d like to thank our stepparents for sharing with us their thoughts and feelings on parenting a child with autism. We recognize there are unique aspects in your role and know that others will benefit from your experience.

Are you a stepparent of a child with autism? Share your story with us!

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