My daughter Lily is 18 years old. Yet during a recent conversation with a new occupational therapist, I found myself explaining why her preferences should matter in decisions about her own life.

Her immediate suggestions were whether or not I had ever tried “First/Then” or a Visual Schedule with Lily. First, I want to address this, then I’ll address the suggestions themselves.

For a new professional walking into an 18-year-old adult’s life, to suggest the very same strategies that were suggested to me when Lily was 2 ½ years old (by ABA providers) is actually pretty insulting to me as a parent; for someone to suggest that at this point is almost implying that I have never tried anything with my daughter in 18 years. Those two strategies are literally two of the first we ever used, unfortunately.

Second, it tells me that she hadn’t reviewed anything about Lily’s file, or any of our history whatsoever. In the British Columbia, Canada system, where your child sits on a waitlist for only a 10-week block with an OT or an SLP, wasting the first of nine sessions with our second OT in this program, reviewing a minimal amount of background with me in the moment, and making incredibly outdated suggestions, was a complete loss of that session and resulted in the loss of the future sessions for my daughter as well.

Now to address the strategies themselves.

“First/Then”

First, Lily would have to do something an adult wanted her to do. This could be something she might find difficult or not want to do for various reasons. And typically in this scenario, she would have to do that for however long, in whatever way, with or without whatever tools the WE decided, didn’t know about, or disregarded.

Then, she would get to do something she enjoyed or felt she needed or wanted.

The therapist did not really consider this a behaviorist strategy. But I explained to her that when access to something Lily wants depends on completing an adult’s demand, I recognize a familiar compliance-based approach.

What concerned me most was how quickly we arrived at strategies for getting Lily to do things, before understanding why those things might be difficult, whether they mattered to her, or what support she actually needed. We also need to really evaluate what was necessary, and what was just intended to make everyone else feel comfortable with what was happening.

In this case, we were talking about Lily’s limited desire to spend time sitting on the couch in the living room. Her preference has been, for several very good reasons, to spend a lot of time hanging out in her room at home.

Had the therapist read her file, she would have discovered that we are in our sixth house, in our third province, in just over two years, after leaving a sudden domestic violence situation.

In that process, we left all family and friends in the place where we lived, in New Brunswick/Maine. We had also had to give up my family in Ontario for a second time when no supports were available for Lily in Ontario’s nightmare of an Autism funding system.

We had sold everything we owned down to nothing, eventually flying across the country, living in four different furnished houses, and then finally just recently moving into our first house where we have all of our own things again.

In each move, we had several different people supporting us, to the limited degree that we could have them financially. Limited and new relationships with workers were what initially started her habit of spending more time in her room, because I think at one point she just had it that nothing was the same, and no one was the same.

There were also significant communication challenges she had to overcome with one person after another.

Changing environments, not just in her home, but in the entire town/ city and surrounding areas, including the family that lived within them, that she had to deal with from one place to another, was just too much.

Dairy Queen kids meals became her safe foods, because it was the only thing that stayed the same from place to place, for so long.

I won’t lie…Obviously, I was stressed about it all too. And she had to deal with me in many of my most exhausted, crisis moments, with very limited capacity at times. We can’t escape our own nervous system, no matter how much knowledge and experience we might have.

This OT also didn’t know that we went from a life of extensive travel, and all of the incredible places we’ve been, things that she’s seen, and things she’s done, to losing her “Dad”, family, home, and ending up largely isolated with me, going really nowhere, particularly without an appropriate wheelchair and someone strong enough to push her, my own disabilities making that too difficult.

There are an enormous number of very valid reasons why Lily might not want to be casually relaxing on this couch, in this living room, in this house, in this city, with whomever it happens to be that is with her in the moment.

Whose goals are we working toward?

I went into this conversation hoping to discuss Lily’s occupational therapy needs. Instead, I found myself repeatedly returning to a different question: Whose goals are these? And what harmful methods are we using to try to achieve them?

As a parent, of course I have preferences about what happens in our home. I might want Lily to participate in an activity or spend time in a particular space. But what I want in a moment does not automatically become a reasonable therapy goal. Nor does it often even become my goal in the moment. I’ve learned better now, and allow Lily to lead her day as much as possible, as the young adult that she is.

Lily has preferences, too. She has reasons for wanting to do something, or for not feeling able to do it. Her limited verbal communication skills, or even her still limited AAC (Augmentative and Alternative Communication) use, should not be any reason for us to assume that her uncommunicated needs shouldn’t still be top priority. We might need to investigate heavily what those are, but the work is worth it. Her age, autonomy, and experiences, past and present, should always be central to the conversation.

At one point, I offered a comparison. Would you tell your 18-year-old that she must first sit on the living room couch for two hours before she can go and spend time in her bedroom?

The therapist said ”Well, no.”

I simply replied, “Exactly.” Even without any other factors involved. Why should Lily’s disabilities make that kind of treatment acceptable? How could her past experiences, all of the changes, and even just what could be going on in her body, or her mind in the moment, not matter?

Before developing a strategy to get her onto the couch, I want us to ask why she doesn’t want to be there. What is uncomfortable? What feels difficult? What does being in her room provide? And why is sitting on the couch the goal in the first place? Does it even need to be a goal? Maybe there even needs to be a long list of other goals that will make her feel safe enough to want to sit in our current living room.

Understanding is different from agreeing

The therapist also suggested a visual schedule.

Visual schedules can be useful. Some people want them and find them helpful. But Lily does not want one displayed, and I felt it was too rigid, so I said so.

The next suggestion was an app. Again, a set schedule.

Changing the format did not answer my concern. What would the schedule contain? Who would decide what went into it? Would it help Lily organize a day she had a say in creating, or outline a series of adult expectations with an enjoyable activity planted in the middle and at the end?

I can communicate with my daughter. She understands what I am saying. Sometimes, she simply does not want to do what I suggest. The therapist didn’t know that, however, because she definitely did not review our history.

That distinction matters. Disagreement does not necessarily mean a person needs a clearer instruction, another visual, or a more effective incentive.

Sometimes, it means we need to listen, not just to verbal attempts and AAC use, but also to her stress tones, her body language, the changes in her movements and facial expressions, etc. We also need to take a moment to listen to whomever else might be able to tell us what has happened in the moment, in her day, or whenever a situation that can help us to understand this moment may have happened.

It also means we need to ask, Why? And… Why now? Self-Reg and Dr. Stuart Shanker taught me this. The list of possible reasons behind any given moment with a child would truly astound you, and yet we so often make assumptions about what’s happening, often not in favor of the child, and all too frequently, with a negative bias about their intention and thought process.

Predictability should support a person, not remove autonomy

Another suggestion was to establish a consistent after-school routine, so Lily would do the things she assumed that I wanted her to do, and some that really would be a nice preference, I won’t lie, but I still can’t honestly come up with really good reasons for, other than they are “normal”, whatever that means.

I explained that I do not have a problem with Lily choosing different activities on different days. That flexibility makes sense for our family. I also feel that she deserves this type of autonomy as an 18-year-old, though I’ve been largely following Lily’s lead in her day since she was about 13, and I learned the significant benefits of this.

I do not want to introduce a rigid routine simply because it makes adult expectations easier to enforce.

If a routine helps Lily, that is a conversation worth having, with her needs and preferences at its center.

The same applies to activities we plan together. If we arrange to meet the OT at a swimming pool, I am not going to force Lily to swim because that was the plan.

She may arrive and feel differently. Something about the environment may be uncomfortable. She may want to watch before deciding. She may simply change her mind.

A plan should be centered around the person participating in it, not the parent and their wants and needs. It always amazes me when an OT asks what I want my goals to be. My immediate response is usually, “I’m not an OT. What do you suggest she might need from an OT standpoint?”

Ask what makes something difficult

Lily also experiences significant challenges related to OCD and PDA. During our conversation, it became clear that the therapist did not know about OCD when she said that “it’s not reasonable to not be able to have (random) things out” around my house whenever I wanted. I tried to explain that I chose different ways, places, and timing that I do things in order to limit my daughter’s stress level with her OCD. I didn’t even get to mention PDA.

That should have been a reason to pause and learn more before recommending strategies.

I am not trained in treating OCD, and I have struggled to find a specialist. I need professionals who recognize the limits of their understanding and are willing to ask questions, collaborate, and seek appropriate expertise.

When Lily finds something difficult, I want us to be curious about her experience. I want everyone to consider the environment, the demands being placed on her, what she is communicating, and to discover what she may need/want beyond those communication skills.

Moving immediately to First/Then, social stories, or schedules can leave those questions unanswered. Yes, she mentioned social stories as well. A strategy for increasing participation does not, by itself, explain what is preventing participation, nor address the core issues potentially.

The purpose matters more than the label

I do not believe every use of the words “first” and “then” is harmful. Those words can simply explain a sequence: first we drive to the pool, then we swim.

Likewise, a visual schedule can support autonomy when someone wants it, helps create it, and can change it.

My concern is conditional access. If you must first meet the adult’s expectation to gain access to something important to you, there is a problem.

We need to examine what a strategy actually does. Does it provide useful information? Does it help someone pursue their own goals? Does it build skills in a relationship-building and collaborative way? Can they decline or ask for a change? Or does it make compliance the price of access?

Simply labeling an approach supportive does not resolve those questions.

Autonomy belongs in the support plan

I want Lily to have support that helps her navigate difficulties and participate in things that matter to her. That requires a relationship in which her communication is taken seriously, including when she communicates disagreement, in whatever form, even through a behavior that might be inconvenient for others.

It also requires professionals to reconsider a goal when the person receiving services does not share it. This OT sent me a letter dismissing us from their OT Services instead. Thankfully, I had already emailed our funding office to suggest that these services were no longer appropriate.

What does that say, however, for any parent advocating for neuro-affirming, trauma-informed, and relationship-driven practices? Too often, disagreeing means losing services.

All of this matters beyond one occupational therapy appointment. In schools, homes, and community services, we need to look closely at everyday practices that make adult control seem inevitable. The work of moving away from coercion includes examining whose preferences count, how we respond to refusal, and whether support leaves room for meaningful choice.

Families should be able to raise these questions without being treated as obstacles. People receiving services should have a voice in defining what successful support looks like for them.

Lily is 18. She deserves help understanding and meeting her needs, pursuing her interests, and making decisions about her life.

Her autonomy should already be a huge part of the starting point.