As parents, we are entrusted with protecting our children. But there comes a point, especially as they approach adulthood, when protection must be balanced with dignity, respect, and a deep belief in who they are capable of becoming.
If you are raising a child with a disability, odds are you have been told, often repeatedly, that guardianship is what you will need when your child turns 18. I heard it so often that I assumed it was simply required. It was presented as a given, not a choice.
What many parents are never told is that guardianship is not just support. It is a legal declaration that an adult is incapacitated. It removes fundamental rights, often permanently, such as the right to vote, to marry, to make medical decisions, to sign contracts, and to decide where or with whom to live. Once those rights are taken away, restoring them is incredibly difficult.
While laws vary by state, one thing is consistent across the country. Guardianship is frequently presented as the next step when a child with disabilities turns 18, when in reality it should be considered only after less restrictive options have been explored.
That distinction matters.
This does not mean guardianship is never appropriate. It exists for a reason. In some situations, it provides necessary protection and clear legal authority, particularly when safety or exploitation is a concern. For some families, guardianship truly is the right choice.
But it should be an informed decision, not a default one made out of fear, pressure, or incomplete information.
Here is what I want parents to hear loud and clear. You know your child better than anyone else. Better than doctors. Better than therapists. Better than anyone who sees your child for an hour at a time or through a narrow lens. Before you legally declare your child incapable of making decisions, you owe it to them, and to yourself, to slow down and learn everything you can.
My son is considered severe/profound. He is non-speaking. And yet, he has supported decision making.
We presume competence.
That belief did not come from denial or wishful thinking. It came from years of learning, reading books written by non-speaking autistic adults, following blogs, watching documentaries, listening to podcasts, and paying attention to voices that are too often ignored.
What became abundantly clear is this, many non-speaking autistic individuals are highly intelligent. Their brains work just fine. Their bodies do not.
Apraxia of speech can prevent someone from speaking and from responding reliably when expected to. Their thoughts, feelings, humor, opinions, hopes, dreams, and intelligence are all there, trapped behind a body that does not cooperate. The stimming, the vocalizations, the awkward movements, none of these are indicators of what is happening inside.
We often make devastatingly wrong assumptions based on appearance and behavior.
Many non-speaking individuals who have learned to communicate by spelling, using a letter board, keyboard, or similar method, have shared something extraordinary. They believe that all non-speakers have the ability to learn to spell to communicate. For some, it comes easily. For others, especially those with very complex motor challenges, it is a marathon, not a sprint.
That does not mean it is not possible.
In our home, we talk to Josiah as we would to any typically developing adult his age. We assume he understands everything, because he does. We expose him to high level, intellectually rich content. We read aloud books written by non-speaking autistic authors. It encourage us and hopefully inspires Josiah. We give him choices throughout his day. We tell him often how smart he is, how capable he is, and how proud we are of him.
We remind him that while he does not yet have a reliable way to express himself, we know he is in there. And we remind him that we will not quit until he has a functional form of communication, because his voice matters. He is going to make a difference in this world, in ways we cannot yet imagine.
This is why I urge parents to educate themselves before jumping straight to guardianship. With meaningful communication and the right accommodations and supports, many individuals once assumed to be incapable have gone on to attend college, vote, enter relationships, advocate for themselves, and live rich, self directed lives.
Guardianship can permanently close doors, doors your child may not have had the chance to try opening yet.
This is not about rejecting guardianship outright. It is about resisting the narrative that disability automatically equals incapacity. It is about presuming competence. It is about believing there is more there than meets the eye. And it is about honoring your child’s humanity, dignity, and potential.
Presume competence. Lead with curiosity instead of fear. And before making decisions that cannot easily be undone, give your child every opportunity to show you who they are and what may be possible. God has a plan, and thankfully, He does not ask us to have it all figured out by age 18.