Q&A with Geoff: How Do I Navigate My Fears About Autism in My Future Children?

Question

I’m engaged to be married to the man of my dreams. This next line will undoubtedly make me sound shallow and unkind. But his brother is severely autistic, and I’m afraid that we’ll end up having a child of our own with autism too. 

Both he and I want to have children very much. We’ve talked about it and he’s very excited. He’d make a great father and will be a wonderful provider. That’s not the issue. I’m just so afraid of the challenges that will be placed on us if one of our children has autism. His parents have talked about how much of a challenge it has been with his brother throughout their life.

The whole family, including me, absolutely adores the brother. But adoration aside, it’s a burden I’m not sure I’d voluntarily take on.  

I’ve not talked to my fiancé about this. I’m not sure how to approach him about it. I know it will absolutely devastate him. I also know it may be unlikely that one of our children would have autism. There is another family member of his that I know of with autism. It just feels like a risk that I can’t overcome. 

I, of course, knew about his brother when we met, but it didn’t hit me until we got engaged. It’s to the point where if I tell him, I believe our relationship would end, and I’d have to live with the shame that I feel this way. If there’s anything I could do to save the relationship if that happens or a way to break this to him, I’d love the advice.

Answer

Your letter strikes at the heart of many people’s fears about potential challenges in raising children. Everyone hopes for healthy, thriving children, but we can’t predict or control the challenges we might face as parents. It’s impossible to predict the challenges we will have with our children or the burdens we might be asked to carry in the service of those we love. 

First, let me acknowledge your concerns without judgment. All of us have fears about the unknown, and it’s okay to have reservations and anxieties about the future. Your concerns make sense in the context of your observations and experiences with his family.

However you move forward, make sure to remember to not let fear guide all your choices. Fear convinces us that we must handle everything alone and that we won’t be okay. Walking into the unknown of marriage and family life can be scary, but you are not left alone to handle these challenges. 

Here are some suggestions that you might consider as you move forward:

Educate yourself

Before you jump to conclusions about the potential risks of having a child with autism, it would be helpful to become informed. While there is a genetic component to autism, it’s multifactorial and not entirely understood. Consider speaking with a genetic counselor or expert who can provide insights into the specific risks. Also, consider speaking with other families who have raised children with autism. Learn everything you can about their experiences, challenges, and blessings.

Open a conversation

Holding onto this fear and concern without sharing it with your fiancé will create distance in your relationship. Plus, you may learn that he shares the same worries about his future family. He may also have compassion and understanding about your fears and concerns and how it impacts your relationship going forward. Either way, it’s critical you discuss this with him openly and honestly so he can also make decisions about the future of your relationship.

Reframe the narrative

Instead of viewing potential challenges as burdens, can you see them as opportunities for growth and deepening love? Many families with members who have special needs often highlight the profound lessons they’ve learned about love, patience, and resilience. This isn’t to dismiss the real challenges they face but to recognize the capacity we all have for growth in the face of adversity.

Deepen your capacity to tolerate uncertainty

This uncertainty is one of many you’ll need to navigate throughout your life with or without him. It’s impossible to predict every challenge that will stretch us in marriage and family life. Even though you have specific evidence that this could be a possibility in your future, there are plenty of other unknowns that could play out over the course of your marriage and family journey. Marriage and family life is full of joyful and painful surprises.

Finally, remember that there’s no shame in having concerns or seeking clarity. You’re allowed to honor your limits and decide what known issues you want to accept or avoid. There are plenty of headwinds in marriage and family life and as we’re dating someone, we get to observe and decide what challenges we’re willing to accept. Even though there will be plenty of surprises, it’s the work of dating to sort out those things we want and don’t want.

However you choose to proceed, remember that relationships thrive on openness, honesty, and vulnerability. By sharing your feelings and seeking understanding, you can find strength and offer strength. Whether you choose to move forward with this relationship or end it, the experience of exploring this openly and honestly with your fiancé will help you develop important relational reflexes that will serve you and your future marriage and family.