When you’re raising an autistic child, some of the most difficult decisions involve their future. Choosing a school, changing medications, evaluating treatment options, or considering a residential placement can feel enormously consequential. And when you can’t predict how things will turn out, the pressure to make the “right” decision can leave you stuck in endless research, second-guessing, or avoiding the decision altogether.
In this episode, Lisa Candera, The Autism Mom Coach, kicks off her four-part Future Planning Series with a practical framework for making decisions about your autistic child’s future. Drawing on her experience parenting her 19-year-old son and coaching autism moms, Lisa shares how she approaches high-stakes decisions, why even well-informed choices don’t guarantee the outcomes we want, and how to move forward when you’re working with imperfect information.
In this episode, you’ll learn:
- How to separate the decision you actually need to make from all the future outcomes you’re trying to control.
- Why identifying your non-negotiables can help you narrow your options and make more informed decisions.
- How to determine what information you really need instead of getting stuck in endless research or other people’s opinions.
- Why making a decision also means knowing when to reassess, adjust your approach, or move in a different direction.
Whether you’re choosing your child’s first school, considering a new treatment, navigating a placement change, or planning for adulthood, this episode will help you approach difficult decisions with greater clarity. You won’t always know how a decision will turn out, but you can learn to make thoughtful choices with the information you have, evaluate what happens next, and move forward without constantly questioning yourself.
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Transcript:
When you’re worried about your child’s future, it is easy to treat every decision as though it’s going to determine the rest of their lives, and that puts an enormous amount of pressure on you to get it right.
After nineteen years of autism parenting, I’ve learned that I’m never going to have all of the information. I’m never going to predict exactly how something will turn out. And even when I make a thoughtful, well-informed decision, circumstances can change. I’ve had to change schools, change providers, reconsider treatments, and pivot on decisions that took months to make.
And I’m going to keep doing that for as long as I’m involved in making decisions for Ben.
You’re listening to episode 220 of The Autism Mom Coach: Future Planning Series, episode one of four, “How do I know I’m making the right decisions for my autistic child?”
Hello, everyone, and welcome to this week’s episode of the podcast. I am so glad you’re here, and I hope you’re doing well.
For the next few episodes of the podcast, we are going to focus on the future. It’s spooky season after all, and there aren’t many things scarier to an autism parent than thinking about the future. In this series, I am going to address four of the most common questions I hear from autism moms about their children’s futures.
Not surprisingly, I always hear from my clients that they are worried about their child’s future. But when I start to dig in and ask them specifically what they are worried about, I find that the worry is often really big, really broad, and undefined. They can’t always tell me exactly what they’re worried about.
They just have this sense that the world is not going to be kind to their child, and that they need to do everything they possibly can to prepare for the future, to prepare for their child to navigate the future with or without them.
And all of that is scary as hell. I get it. My son is nineteen years old, and I can tell you that navigating his future today is every bit as difficult as thinking about it was when he was two years old. Now, just like then, there are a lot of unknowns, a lot of uncertainty, and some very real things to worry about.
But there is one important difference.
When your child is young, you tend to believe you have more control over how things will turn out, and in some ways you do. We all make decisions about therapies, schools, services, and interventions. You can create opportunities, build skills, and advocate for your child’s needs.
Looking back, I think I confused having influence over Ben’s development with having control over his future. I thought that if I learned enough, researched enough, found the right professionals, the right services, and made good decisions, I could somehow stay ahead of autism or at the very least blunt the impact my son’s autism would have on him and his future.
After 19 years, I can tell you that hasn’t happened. And like many of you, I’m not just dealing with autism anymore. Things like ADHD, anxiety, OCD, they have come to join the party, and that combination has brought so many unexpected challenges that we continue to navigate.
Over the next four episodes, we are going to take a look at that big general worry about the future and break it down into four questions I hear the most from autism moms.
- How do I know if I’m making the right decisions?
- How can I plan for a future when I don’t know what it will look like?
- What if this is all for nothing?
- What should I actually be doing right now to prepare?
Today we’re starting with one of those questions that comes up with almost every decision that we make as autism parents, and that is, how do I know I’m making the right decisions for my autistic child?
I recently coached the mom of a two-and-a-half-year-old autistic child about this very topic. She came to the call telling me that she was worried about her kiddo’s future, and I was trying to figure out, what had brought that up for her in that moment. And what she told me was she had been procrastinating looking at the different schools that her son would be eligible to attend once he turned three years old.
She was so afraid of making the wrong decision. What if she picked the wrong one?
Or what if she picked a program that seemed like it was the right fit, but actually, in hindsight, years down the line, she would have a different opinion of that decision. We’re not only grappling with making the decision in real time, we’re also fast-forwarding to a time where we’ve discovered that our decision in the moment with the information that we had was not the decision that we would make five, ten, twenty years down the line.
And we picture ourselves in that moment browbeating this version of us for not somehow being clairvoyant. And that’s exactly what this client was experiencing when she came to this call.
But this is not just the experience of moms of toddlers. The same things happen when your child is 10, 15, 19, 22. You’re deciding whether to change medications, request a different placement, agree to a treatment recommendation, or push back against a school team.
The decisions change as our kids grow older, but the pressure to get them, quote-unquote, right never goes away.
I recently had this dilemma when deciding whether or not to proceed with OCD surgery for my son. We had tried every medication, every treatment option, and nothing was putting a dent in that profound OCD that he was experiencing.
But the surgery itself was not a guarantee. In fact, the percentage of folks that had a significant improvement, I think, was, like, a little bit over 60%. There was almost an equal chance of having little to no results at all.
You can gather the information, you can talk to the professionals, you can poll your friend group. But at the end of the day, you need to make a decision based on imperfect information and your own gut instinct.
And in this case, my gut instinct was we had to try. If there was a possibility of putting a dent into the profound impact that OCD has on my son’s day-to-day life, we had to do it. And so we did. He had the surgery, and he has had some relief from it.
One of the reasons I was able to make this big decision without a lot of consternation is because years before, I had come up with a system for how to make decisions with imperfect information and uncertainty guaranteed.
And for this framework that I created, the premise of it is that there are no right or wrong decisions unless you’re dismantling a bomb.
There is just the decision that you make and what you learn from it and what you do next.
Because the truth is, you can make a decision that is solid, that is backed up by data, by experts, by everybody in your friend group, and you can still get an outcome that you didn’t want.
And if you view this as a failure, as a reason to second-guess yourself, to judge yourself, to shame yourself, you’re going to make it really hard to make the next decision, because there is always a next decision when you’re parenting a kiddo with special needs.
Step 1: Get Clear About What You’re Actually Deciding
All right, so let’s get practical. When I’m coaching a mom who’s stuck on a decision, one of the first things I do is help her get clear about what she is actually deciding. Because sometimes we’ve taken that one decision and turned it into fifteen.
So let’s go back to the mom of the two-and-a-half-year-old who’s choosing a school for her toddler.
The actual decision is where he’s going to attend school next year. But in her mind, the decision is connected to what his education will look like five years from now, whether he’ll develop certain skills, whether he’ll make friends, and ultimately what kind of adult life he will be living.
That’s an awful lot to ask of a preschool decision, so we start narrowing the scope.
So we start by narrowing the scope. What exactly needs to be decided and by when?
Step 2: Identify Your Non-Negotiables
Step two: identify your non-negotiables. One of the things I do with coaching clients who are struggling to make a decision is help them identify what absolutely needs to be in place for an option to work.
I worked with another mom a few years ago whose child had significant medical needs. When we were doing this decision tree about her school placement for her child, one of the things she identified is that the school needed to be affiliated with a hospital so that her child would have access to the appropriate medical support on campus.
In addition, she identified as a non-negotiable that the school needed to be a certain distance from her home because her child could not withstand long bus rides.
With those two non-negotiables in place, we narrowed a list from five to two options. And once we identified the essential requirements, we could eliminate schools that didn’t meet them.
Instead of comparing every possible program, we were looking at two schools that could actually meet her kiddo’s needs. And I’ve used this approach myself when I was looking at out-of-district placements for my son.
I had the non-negotiable of a therapeutic environment where my son would have access to a social worker during the day. I also wanted a school where a lot of the kids that they served had autism because I thought it was really important for the folks who work with my kiddo to deeply understand autism.
And that criteria helped me narrow down the schools that I was looking at without going through the tremendous amount of time and prep. Instead of touring many schools, I was touring two schools.
And from there, you get to make the decision based on your preference. Did you have a connection to the school as soon as you walked in and feel welcomed?
Did your child really like the tour and really like the teachers and seem to be really interested in going back? You factor those things in once you’ve narrowed down to options that meet your non-negotiables or come as close as possible.
You can use this process with just about any decision. If you’re choosing a therapist, what qualifications or experience are essential? If you’re evaluating a residential placement, what safety supports, staffing, or behavioral expertise must be available? If you’re considering a medication change, what symptoms are you trying to address?
What risk are you weighing, and how will you and the prescriber evaluate whether it’s helping?
Step 3: Identify the Information You Need
Step three, identify the information you need. The third step is to decide what information you actually need, and this is where most of us get stuck.
We keep researching because we don’t feel ready to decide, or we put off the researching altogether because we don’t even want to decide.
That’s why I suggest before you start researching, ask yourself, “What information am I missing that would change my decision?”
So for me, when I was evaluating placements for my son, I went online to a Facebook group that had other autism parents, and I asked about experiences, and I immediately found out that there were really two camps, people who loved a particular place and people who hated a particular place.
I decided early on that other people’s experiences of their child with autism were not going to be the make or break for me, that I was essentially going to net them out to a nothing because I’ve had great experiences at places people have hated and vice versa.
So for me, that’s not information I’m looking for because that’s not information that’s going to sway me one way or the other.
Step 4: Make the Decision and Establish When You’ll Reassess
And then finally, the fourth step is to make the decision and establish when you will reassess.
Most of the decisions we make for our autistic kids aren’t permanent. We might approach them as though they are, especially when we’ve invested so much time and energy into them, or we are connecting such high stakes to them, like my client with the preschool student.
But the fact is, circumstances change, and sometimes things don’t work out the way we expected.
The answer here is not to decide that the decision was wrong. It is to learn what there is to learn from the decision and the experience to make the next right decision.
And I can give you a very real example of this.
Several years ago, I spent months trying to secure a placement for Ben. I engaged an education consultant. There were intake meetings, applications, interviews, gathering records, flying my son cross country with all of his belongings, because this perfect placement was in Utah.
And after all that work, the placement lasted less than a week.
This was incredibly heartbreaking to both Ben and myself. But once it was clear that the placement wasn’t going to work, continuing to question whether I’d made the right decision, that wasn’t of any help to us.
We now had new information about what Ben needed, and we needed to pivot from there.
Sometimes you make a decision and it works out for years. Sometimes it works out for six months. And sometimes, despite everything you’ve done to prepare, it lasts less than a week.
Another example I have from my own life is when I was creating a will for Ben. And I procrastinated on this for years, because I couldn’t think of anyone outside me and his father to make decisions for him, to care for him in our absence.
This process helped me move through that procrastination by identifying the goal. The goal was to provide for Ben’s security. The decision was who to name. The non-negotiable was his security. And so in viewing it through that lens, I just picked a person. It didn’t have to be the forever person.
Of course, some decisions do have lasting consequences and are difficult to reverse. But I don’t want you approaching every decision with the expectation that you have to get it right forever.
You can agree to a trial of a treatment. You can put a support in place and change it if your child’s needs change. Instead of trying to guarantee that you’ve chosen correctly, make a plan to evaluate whether the choice is working. And when you have that new information, then you make the next decision.
After You Decide: Managing the Urge to Second-Guess Yourself
Finally, after you make a decision, it’s important to let it be.
You can go through this entire process, make a thoughtful decision, and still find yourself second-guessing it. You choose the school, and then you hear about another program. You agree to a treatment plan, and then you read something online that makes you wonder whether you should have chosen differently.
Your child has a difficult week, and suddenly you’re questioning the entire decision. This is where managing your own thinking becomes part of the work.
You have to recognize when you’re responding to genuinely new information and when your brain is simply reopening a decision because uncertainty is uncomfortable.
Those two things can feel very similar. If something has significantly changed, pay attention, ask questions. But if nothing has changed, notice that too, because no amount of reviewing a decision will make the future certain.
This is something I have to remind myself of on the regular because my brain wants to solve problems, anticipate obstacles, and prepare for what’s next.
I find the same in so many of my clients. They have very type A personalities and analytical minds, and they’re always thinking 10 steps ahead. That is important as an autism parent, but they’re also worrying 10 steps ahead.
That’s the part where we need to pull ourselves back or have someone in our lives that can help us pull back, because that just gets us into a pattern of constant worry and decision paralysis.
Four Questions to Ask Before Making a Big Decision
So if you’re facing a big decision right now, ask yourself four questions.
- What exactly am I deciding?
- What are my non-negotiables?
- What information do I actually need to make this decision?
- How will I know when it’s time to reassess?
Coming Up Next in the Future Planning Series
That is it for part one of the future planning series. Next week, we’re going to tackle another question I hear all of the time: How do I plan for my autistic child’s future when I have no idea what that future looks like?
It’s a question I was asking when Ben was two, and one I’m still dealing with now that he’s 19.
And before I go, if you are facing a big decision right now and finding yourself stuck in the research, second-guessing, or worrying about getting it wrong, this is exactly the kind of work I do with moms in private coaching.
If you’d like to talk about working together, you can schedule a free consultation using the link in the show notes.
I’ll see you next week.
