Raising a child with autism places some extraordinary demands on parents as individuals and on the family as a whole. Prime among these demands is the lack of enough hours in the day to do all one wishes. Specifically, the time involved in meeting the needs of a family member with autism may leave parents with little time for their other children.
Many parents feel that even as they do all they can for their child with autism, they are always struggling with how best to respond to the needs of the family as a whole. They say that although their own life as an individual may be put “on hold” and a couple may share an understanding of the need to make sacrifices on behalf of their child with autism, few parents are willing to make that same demand of other children in the family. As a result, there is a continual tension between the needs of the child with autism and those of the other children.
This section offers suggestions to parents about ways to help the other children in the family cope gracefully and effectively with the experience of having a brother or sister with autism. Research indicates that the majority of brothers and sisters of children with autism cope well with their experiences. That does not mean, however, that they do not encounter special challenges in learning how to deal with a sibling who has autism or a related disorder.
Ohio Center for Autism and Low Incidence has a helpful document about tips for supporting individuals with autism spectrum disorders:
Tips to Enhance Interactions with Individuals with Autism Spectrum Disorder.
Caregiver Connection
Marya Patrice Sherron, facilitator of the Caregiver Connection. An accomplished educator, advocate, and author, Marya brings a thoughtful perspective and unique voice to her work.
Early in our autism journey, I hid. My child’s behaviors were significant. Taking him places was hard. People stared. People didn’t understand. I didn’t have the information I needed, I didn’t know where to find resources, and perhaps most importantly, I didn’t know there was a community waiting for me.
I remember thinking, If I’m experiencing this, I cannot be the only one.
That became the beginning of the Caregiver Connection. I wanted to see what I could do to make the journey a little less isolating for another parent or caregiver—even if all I could offer in a particular moment was, You’re not alone. Sometimes those three words hold a lot.
We began nearly four years ago as a small group of moms meeting virtually each week. One of the first things I asked was simple: “What is your greatest need?” The answer was unanimous.
Community.
They needed each other.
That answer has stayed with me, and it established something that continues to guide the Caregiver Connection today. When the Autism Society of Indiana and I began developing this work together, we aligned very quickly around what we did not want to do: We didn’t want to create a program based on what we thought caregivers needed and then ask families to fit themselves into it. We wanted to listen first. We wanted to hear the felt needs of families and allow the Caregiver Connection to become what the community needed it to be.
I think that willingness to listen is one of the most important parts of what we do.
The needs of our children change. Our families change. We change. There are seasons when someone needs community and a person sitting across from them who simply understands. There are seasons when they desperately need information, practical tools or a resource they didn’t know existed. My hope is that people leave the Caregiver Connection with what they need at that time.
Over the years, that has required us to change, too.
As the disability-services landscape has become increasingly difficult for families to navigate… with reduced supports, long waits and families carrying more of the burden… we realized that providing community was essential, but it wasn’t enough. Families also needed to be equipped. We shifted toward more in-person gatherings to help foster stronger relationships, but we also became much more intentional about connecting families with information, organizations, resources and practical tools.
Along the way, I discovered something I wasn’t expecting.
I entered this space believing there was primarily a lack of resources. What I have learned is that sometimes there is an equally significant problem: families don’t know about the resources that already exist.
I continue to encounter organizations doing extraordinary things and think, How do our families not know about this? Regions Bank is one recent example. Learning about the accessibility work they have developed—from sensory spaces to resources designed to support greater independence—floored me. There is so much happening in our communities, but there is no single pathway that connects a family to everything that might support them.
That realization has become a tremendous driver for me. Caregiver Connection still says, You don’t have to do this alone. Increasingly, though, we are also saying, You don’t have to figure all of this out alone.
In many ways, that work is a natural extension of my background and education.
By trade, I was a collegiate professor, and I have spent much of my professional life teaching, facilitating workshops, team building retreats, and developing seminars and trainings. If I were going to claim a superpower, it would be creating spaces where people feel seen and heard—and where they leave feeling more connected than when they arrived.
But you cannot create that kind of space without listening.
You have to ask questions. You have to listen to the answers. Then you have to be willing to let what you heard influence what you do next.
That philosophy also lives at the center of KĪ Productions & Publishing. Through KĪ, I work as a story-development coach, collaborative writer, ghostwriter, publisher, educator and facilitator. Almost two years ago, we founded Neurodiversity Press, an imprint I am incredibly proud of because it gave us an opportunity to build advocacy directly into our publishing mission.
With Neurodiversity Press, we are intentionally seeking the stories, experiences, resources and perspectives of neurodivergent individuals and their families. We aren’t simply waiting for those stories to find us. We are saying, “We want your story.”
There is a phrase used often in the disability community: Nothing about us without us. Our voices have to be part of the conversation. Our children deserve to see themselves represented in the books they read, but representation also has tremendous power for the people around them.
A children’s book can help a child recognize themselves on the page. It can also help a classmate understand why another child wears headphones, communicates using a device or needs a sensory break. It can help a teacher, grandparent, neighbor or friend see that child differently.
Story can educate without lecturing. It can create understanding where there was once judgment, and it can make something unfamiliar feel human.
To me, that is a different form of advocacy.
It is also why I spend so much time encouraging caregivers to tell their stories. Sometimes people cannot do better until they know better, and our stories help people know better.
That doesn’t necessarily mean writing a book. Storytelling can be standing before a group. It can be creating art. It can be writing a letter to a legislator about what a policy decision actually looks like inside your home.
Don’t just say services were reduced. Tell them about Micah. Tell them who Micah is. Tell them about the progress he made, what changed when those services disappeared and what that means for his family. Put the human being back into the conversation.
Our stories remind people that behind every policy, waiting list, waiver, statistic and decision is an actual person and a family living with its consequences.
That is why I believe so deeply in self-empowerment. Your story is worthy. Your experience matters. Your perspective matters. And your voice can make a difference.
I also know that using that voice can be scary. I know what it feels like to hide.
So if you are a caregiver or an individual affected by autism who is searching for community and you cannot find what you need, I want to encourage you to start somewhere. Post something. Invite another caregiver to coffee. Gather a few people in your living room. Ask a question. Tell someone what you need.
You start by starting.
Sometimes the systems around us don’t know what our families need because no one has created it yet. Someone has to be willing to step forward and say, Hello. This is a real need.
And if that first step feels intimidating, there are people who will take it with you.
That is what I want families to know about the Caregiver Connection. It is for you, and in many ways, it is shaped by you. I don’t have an agenda for what your family should need. My commitment is the same one we began with: to listen to the people we serve, hear what they are telling us and allow that to guide what we build next.
I am incredibly grateful to the Autism Society of Indiana for allowing the Caregiver Connection the freedom to remain flexible—to ebb and flow as the needs of our families change. I am humbled by what it has become and by every caregiver, family and individual who has trusted us with a piece of their story.
Four years later, I think I understand something I didn’t fully understand when I was the mom who was hiding.
Sometimes finding community begins with someone being brave enough to say, I need help.
And sometimes building community begins when someone else answers, I’m here.