Advocate to Ally: Fostering Self- Advocacy in Adulthood

About the Author

Ilia Walsh is the director of Individual and Family Services at AANE and the creator of the Autism In Real Life Podcast. Ilia is a mom of two young adults, one of which is Autistic. She has over 25 years of experience with families, children, and adults through training, education, and support. Ilia is also a registered yoga teacher and also enjoys painting, dancing, and traveling.

When my son Ryan and I stand side by side to present Parents as Partners, we are not just sharing information. We are sharing our lived experience: two perspectives that do not always match but together tell a fuller story. I come as a parent who has spent decades navigating schools, therapies, and systems. My son comes as an Autistic adult who has had to live within those systems every day. That combination, a parent’s viewpoint and an adult child’s lived reality, is what gives our presentation its heart.

Families who join us often carry some heavy questions: Will my child be independent? What will happen when I am no longer here? How much should I step in, and how much should I step back? These questions are rooted in deep love, but they can also feel overwhelming. What we have learned, through trial and error in our own family, is that advocacy is not about control or certainty. It is about partnership and finding ways to walk side by side even when the path looks different than we expected.

I know in my own life there have been times when my worry pushed me to step in too quickly, offering solutions before my son had a chance to figure things out. He has reminded me, sometimes gently and sometimes more firmly, that real advocacy is not about me speaking for him. It is about supporting him in finding his own voice. Parents of adult children, regardless of neurology, face questions about independence, connection, and how to maintain a healthy relationship across changing seasons of life. Every adult child, neurodivergent or not, deserves that balance of guidance and respect.

To talk about advocacy, we first need to talk about neurodiversity. Neurodiversity is the understanding that human brains naturally vary in how they process information, communicate, and interact with the world. Autism is one part of this natural variation.

Historically, autism has been described through the medical model, which frames it as a disorder or deficit to be treated or cured. That model tends to place power in the hands of professionals and caregivers, often silencing the Autistic voice.

The social model of disability offers a different perspective. It views autism as a set of neurological differences and recognizes that the greatest challenges often come from rigid societal expectations. In this model, advocacy is not about fixing a person but about removing barriers and creating inclusion.

As my son has shared, “When I am out in the world, I am constantly balancing executive functioning, social communication, and sensory processing. It feels like juggling with no break. Advocacy is not about me changing who I am. It is about finding ways to make the world less exhausting.”

The Adult Child’s Voice

My son describes self-advocacy as “knowing what you need, believing you have the right to it, and finding ways to ask for it.” That may sound straightforward, but in reality, it’s often more layered and taxing than it seems.

Speaking up means risking rejection or misunderstanding. It can mean asking for extra time on a task, explaining sensory needs, or declining an invitation when the social load feels too heavy. “It takes energy to explain myself over and over,” he says. “Sometimes it feels easier to stay quiet, but that usually just makes things harder later.”

What truly makes a difference is when parents support and collaborate with their child, reinforcing their confidence. As my son says, “I don’t need someone to speak for me. I need someone who has my back when I hit a wall and who trusts that my experience is real, even if it doesn’t look like theirs.”

He also reminds me, “The times I grew the most were when I discovered what worked for me, not when someone handed me the answer.”

While he speaks from his experience as an Autistic adult, I believe this principle holds true for everyone. All adult children thrive when their parents trust them to lead their own lives, while offering steady support when the world feels too heavy to face alone.

Principles for Partnering

Through our journey together, my son and I have come to rely on a set of guiding principles. They are not perfect rules, but they help us focus on partnership instead of control:

1. Understand each other’s neurology. Differences in ways of thinking, processing, and responding are natural and valid.
   
2. Manage expectations. Progress is not always linear and independence and interdependence can take many forms.
   
3. Build a support system. No one thrives alone. Being able to rely on family, friends, peers, professionals, and community matters.
   
4. Encourage growth with respect and perspective. Trust their autonomy while offering input when you see risks they may not.
   
5. Know your child. Celebrate their strengths and passions as well as their challenges.
   
6. Know yourself. Be honest about your own fears, hopes, biases, and limits.
   
7. Foster resilience. Mistakes are not failures but stepping stones.
   
8. Empower your adult child. Follow their lead and be their guide and mentor.
   
9. Establish a dynamic relationship. Keep communication open, respectful, and flexible.
   

These principles are not always easy to practice. Sometimes what I think of as “fostering resilience” feels like pressure to my son. Sometimes what feels like giving space to one child feels like absence to another. These moments are reminders that partnership is an ongoing process of listening and adjusting, no matter the circumstances.

Practical Tools for Families

Families often ask us, What can we do right now?

Here are some approaches we find helpful:

• Evaluate current supports. Ask: Does this strategy respect all of our needs? Is it useful or just draining? Is it worth continuing?
  
• Model and encourage reflection. Model identifying and navigating your own strengths and challenges, then support your child in naming their own. 

• Promote small steps. Independence is built gradually: managing one appointment, cooking one meal, handling one phone call at a time.
  
• Advocate together in the community. Parents and adult children can work side by side to navigate schools, workplaces, and public spaces. 

• Model patience. Both parents and adult children will make mistakes. Growth takes time.
  

One example of this was with grocery shopping. At first, my son and I went together, and he picked out some of his favorite items along with our regular staples. Later, he made a small purchase on his own while I stood beside him, and then, another time, went in alone to pick something up while I waited in the car. Eventually, I gave him a short list and a small budget, and he decided which brands to buy. Each step built confidence and skills with less overwhelm..

My son will remind me that failure is part of the process. “Messing something up does not mean I cannot do it. It means I need another try, maybe with a different tool or more support. [My] parents help most when they see failure as information, not proof that I cannot succeed.”

Growing Together

One of the most meaningful lessons I have learned is that advocacy changes both parent and child. It is not just parents teaching their children to advocate. Parents are also shaped by their children’s voices. For my son, knowing I am there beside him, not as a spokesperson or director but as a partner, has given him the courage to try things even when the world feels stacked against him. Every adult child benefits from being heard, respected, and supported in becoming their fullest self. Real growth often comes from stumbling and finding the strength to rise again. A parent’s role is to walk alongside, offering support, but not to carry their child through every step.

We do not always get it right. We sometimes argue. But over time we have learned that advocacy is not a final destination. It is a practice, a way of walking together even when the path is uneven.

Self advocacy is not about perfection. It is about voice, choice, and respect. Parents may always carry fears about the future. Adult children may always feel frustration about being misunderstood. But when advocacy is rooted in partnership, it becomes a shared journey rather than a struggle for control.

As my son has said, “The best support is when my parents stand next to me, not in front of me.”

At AANE, we know families do not need to walk this path alone. Our free resource calls, coaching, support groups, and workshops all exist to give parents and adult children the tools to grow together.

Parents as Partners is one of those workshops. My son Ryan and I present it together, sharing the lessons we continue to learn from each other. When I coach parents and families, I bring the same perspective, encouraging them to find partnership with their adult children where it feels appropriate and possible. Visit AANE’s workshop page to see upcoming dates.