Parenting an Adult Autistic Child: The Fears We Face
Parenting an adult autistic child comes with fears, but when your child can’t live independently, those fears take on a whole new weight. My son Jacob is an incredible young man. He has independence in some ways—he can complete daily tasks, communicate his needs, and engage in activities he enjoys. But the reality is, he cannot live on his own. He has autism and epilepsy, and he needs supervision for things like paying bills, grocery shopping, and managing his health.
As a parent, my biggest fears for the future revolve around three things: our health and longevity, isolation, and the impact on his older brother, Nicholas. If you’re parenting a child with disabilities, I imagine you’ve had these same worries too.
1. The Future: Our Health and Longevity 🏥
One of the hardest truths I face is that I won’t always be here. Neither will my husband. And that reality is terrifying. Right now, we are Jacob’s safety net. We manage his daily routine, make sure he’s healthy, and provide the structured support he needs. But what happens when we can’t?
Jacob’s well-being is dependent on us staying as healthy as possible for as long as possible. We do what we can—exercise, eat well, take care of our mental health—but we can’t stop time. And when I think about the day when we’re no longer here, I feel an overwhelming responsibility to have everything set up for him. Guardianship, caregiving plans, financial security—there are so many moving parts.
For any parent of a child with disabilities, this is one of the most gut-wrenching fears. Who will love and care for our children like we do? And how do we prepare now to make sure they are always safe?
📌 Related Blog Posts to Help You Prepare:
- How to Achieve CALM on Autism Island: Daily Life on the Spectrum
- How We Plan for Halloween on Autism Island
2. Isolation: The Loneliness of the Autism Journey 🌍
Raising a child with autism means your social life looks different. As a family, we have fewer outings, fewer vacations, and fewer opportunities for connection. When Jacob was little, we could make those decisions for him—strap him in the car, bring along familiar items, and power through. Now that he’s an adult, it’s not that simple. He has preferences, routines, and comfort zones, and I have to respect that.
But that respect often leads to isolation. Spontaneous trips? Not happening. Large social gatherings? Overwhelming. The reality is, we miss out on things because we have to carefully consider how they will affect Jacob. And when we do go somewhere, we have to ask ourselves, Will he enjoy this? Will this be too much? Do we have someone to watch him if he doesn’t want to go?
I know we’re not the only family who experiences this. When your child’s world is small, yours often becomes small, too. And while we have learned to embrace this life, it doesn’t mean we don’t grieve the friendships, experiences, and freedoms we thought we would have.
📌 Related Blog Posts on Creating a Supportive Environment:
- The Fire Does Not Consume Us: Life on Autism Island
- How Back to School Goes with My Son Jacob and All Things Autism
3. The Weight on His Brother’s Shoulders 🏡
Jacob has one sibling—his older brother, Nicholas. Nicholas is his favorite person, the one who makes him laugh the most, and the person we know will always look out for him. And while it brings me comfort to know that Nicholas loves his brother deeply, I never want him to feel like his future is dictated by responsibility.
We have had the hard conversations. Jacob will not necessarily live with Nicholas, but he will need to be close enough so that his brother can ensure he is cared for. We want Nicholas to have his own life, his own dreams, and his own family without feeling like his world revolves around his brother’s needs.
This is a hard balance. As parents, we are supposed to carry the weight. But one day, that weight will shift, and we want to make sure it doesn’t become too heavy for Nicholas. So we are making plans, having open discussions, and doing everything we can to ensure Jacob’s future is secure without sacrificing his brother’s.
📌 A Powerful Read:
Finding Strength in the Uncertainty 💙
These fears are real. They keep me up at night. They are always in the back of my mind. But I have learned that I am not alone. Parenting an Adult Autistic Child carries these same worries for all of us, and while the road is uncertain, we can prepare, we can plan, and we can build a community that supports each other.
💬 Let’s Talk: What Are Your Biggest Fears?
If you have these same fears, I see you. I know how heavy this journey can feel. But you don’t have to do it alone.
Join us inside the Autism Thrive Tribe community, where we support each other, share real solutions, and create a plan for the future. Let’s navigate this together. 💙🤗 Join Us! https://hub-8lwnkmevwr.membership.io/registe