Preparing Your Autistic Child for Adulthood with Dr. Haley Masterson and Meaghan O'Dea Johnson

About this episode

In this episode, I'm exploring a question that weighs on so many parents: What will the future look like for my autistic child? Whether your child is a toddler, in elementary school, or already a teenager, the thought of adulthood can feel overwhelming. You may wonder when to start planning, what skills to focus on, and how to prepare without letting anxiety take the wheel.

I'm joined by two wonderful colleagues from my team at Cortica: Meaghan O'Dea Johnson, pediatric nurse practitioner and dietitian, and Dr. Haley Masterson, pediatric neurologist, both of whom work closely with children, adolescents, and families navigating this very transition. Together, we'll cover why the skills that support independence in adulthood begin developing in childhood and why it's never too early to start building them, how to break big goals into small, attainable steps instead of approaching adulthood like a cliff, the powerful role of extracurriculars like Special Olympics and barrier-free theater in building community, friendships, and purpose, why development doesn't stop at 18 (or any age) and how motivation, interests, and new environments continue to unlock growth, how to approach topics like dating, consent, and relationships with directness and respect from an early age, and the systemic changes we need in employment, education, healthcare, and public perception to better support autistic adults.

The bottom line: adulthood is not a cliff. It's a gradual, ongoing process that families can prepare for one small step at a time. With the right supports and intentional scaffolding, autistic individuals continue to learn, grow, and surprise us well into adulthood. As Dr. Masterson shares through her own brother's story, new skills and meaningful experiences can emerge at any stage of life.

And perhaps the most important takeaway: keep your expectations high, and simply adjust your understanding of what supports may be needed to get there. A positive mindset isn't just comforting; it's evidence-based. If you're struggling to see the progress, talk to your child's provider and borrow a little of their optimism.

This episode is for you if you're wondering when to start thinking about your child's transition to adulthood, feeling anxious about what independence will look like for your family, looking for practical strategies to build daily living skills at any age, wanting guidance on navigating legal transitions, higher education, or relationships, or simply ready to hear that with the right supports, autistic individuals can build extraordinary lives filled with purpose, connection, and joy.

Transcript

Click a time to play the video from that point. This transcript comes from the episode’s captions and may contain small errors.

Welcome to Magnificent Minds, where we explore the science of child development with both heart and reason, bringing clarity, compassion and scientific evidence to questions that matter deeply to families. Today, we're talking about something that many parents think about whether their child is a teen in elementary school or even still a toddler. And that's what the future will look like, especially what it will be like transitioning to adulthood. So whatever age your child is, it's never too early to think about this, because the skills that support independence in adulthood begin developing in childhood.

To help us explore this topic. I'm joined by two wonderful colleagues from my team at Cortica, Meaghan O'Dea Johnson, pediatric nurse practitioner and dietitian, and Dr. Haley Masterson, pediatric neurologist, both of whom work closely with children, adolescents and families navigating transitions like this. They bring not only medical expertise but also deep experience helping families think about independence, relationships, health, and the many paths that adulthood can take. Thank you both so much for being here.

Before we dive in, I would love to hear what drew each of you to working with autistic children and adults. Sure. Well, I think it's the best job in the world, but I'm a little bit biased on that one. And I really love the families. Value the families. I do have a brother with autism. He is older than me, so I have some experience in that perspective. As well. But I do feel I would have chosen this career either way because it's just the most interesting one. For me as a dietitian, I worked with people across the lifespan, and what really, helped me focus in on pediatrics was the fact that children grow and develop.

There's so much progress to be made. It's always forward moving. And that, to me, made it feel especially meaningful. This field specifically, I did some primary care and some mental and behavioral health, and I realized that there was really big gaps in care, for children with autism. All of us, you know, at Cortica, we work with, individuals across the lifespan, you know, from really from birth up through adulthood. And so we I think we have, we're really well positioned to guide families in, no matter how young their children are, to really thinking about the future and, independence in adulthood.

I know that a lot of parents of young children with autism do worry about the future. What are your thoughts on is it ever too early to start thinking about adulthood and the transition to adulthood? And how can families approach that, and especially families of young children without feeling overwhelmed? I think that families always start to think about the future and adulthood as soon as they have a child, and so I don't think it should be any different. If your child has any diagnosis. I think one of the specific things that we can look at is making sure we're helping families get connected with their local regional center.

early in life, like birth to three, but it's also a really fantastic resource for those transitional years when they're done with school. They offer programs to support independent living or vocational skills. And they also tend to have really great, like, social skills opportunities for some of those young adults. So I think it's thinking about where our child is now, knowing that no 2 or 3 year old is going to look ready to live independently, regardless of diagnosis, and making sure that we're focusing on the skills and parts of skills, that are going to be like most beneficial to that child as they continue to grow.

So what can we do now that's age and developmentally appropriate to set them on a path, to be able to develop the skills that we would want them to have as they transition into adulthood? I would say that that's all completely. I totally agree. I do see some patients, with autism where I think that there is an understandable amount of kind of overwhelm at the beginning. Especially when we add in that potential trans, transition to adulthood kind of piece. And I generally try to encourage families to kind of understand that that piece, we can talk about more in a little bit more helpful detail as they get closer, perhaps to age eight, I would say, is kind of sometimes, the point that I set somewhat arbitrarily, but there's so much to do before age six right, and age six isn't a hard cutoff either, but there's just so much to do in that early developmental period before we sort of transition into the school or early childhood kind of period.

But I have to admit, when the time comes for a child to turn eight years old, I almost never actually end up having that conversation because it's fairly apparent to all of us at that point. So there's this kind of natural process that often happens between diagnosis and kind of age eight, I feel, in which we kind of understand the child a lot more, and they're still not in their final form. At age eight, but you can kind of start to see the shape that life might take, or at least narrow it down to a few different paths and plan in a more intentional sort of way.

But I think it all has to do with what the underlying drive or emotion is behind thinking about the future. If it's kind of proactive planning, but I think it's never too early, but I think if the thoughts are kind of filled with a little bit of anxiety or dread, I would very much give families permission. Let's put those aside. There's all these wonderful things to focus on now during these years. Yeah. The, I think parents will sometimes imagine adulthood like like a cliff. Scary. Overwhelming.

As something to be avoided. But, the transition I find for families is it's much more gradual. In fact, it is less scary. But, if you can approach it in sort of like, I imagine sort of like, stretching most kind of like if, like if you, you know, you've got a, a ball or balloon or something, you just gradually, gradually stretching in different ways. And then by the time you, you reach that point, you'll have, you know, taking the steps that can, can really make some of these transitions easier. Can you think of examples where, that have have been really positive, you know, where you've seen some wonderful opportunities and developments and changes and, and things, through kind of maybe the later teens into the early 20s?

I definitely have a lot of families where it is that cliff. So it's I've done this for them every day. And for whatever reason, we've decided today is the day that this child is going to pack their own lunch or do their own this or that. And I think where I've seen families and, even like older teenagers make the most progress is when we've been able to really think about breaking those skills down. And eventually we can layer all of those different pieces that we've been able to be successful with together. And now we can do that whole task or routine and kind of taking things that are bigger than that, not just packing our own lunch and breaking them into small, attainable chunks so that we're really teaching the skill instead of just assuming my child is this age today and they should be doing this thing, and here it is.

I agree, I generally find the transition, you know, in large terms to feel very gradual, but the actual moments in which skills are learned are always rather sudden. This week we showed that we can do this. This week we showed we can do this. Specifically regarding a specific example, of someone who kind of continued to learn skills in teenagers and up into the early 20s. I think the one that I can talk most freely about, would probably be my brother.

So my brother Michael, does have autism. It was, probably level two. Level three is the best way to kind of describe him. He's a fun guy. He loves birds of prey, snakes. And then anything to do with vehicles. But he really prefers to be on his own. I think for him, with the transition from adult, from, childhood to adulthood, one of the biggest things was having a little bit more time to dedicate to extracurriculars, because they were sort of the the vine that was still in, in progress.

The one that he could still continue climbing up after school had kind of finished. And those extracurriculars brought him together with a lot of, really fantastic adults and the special needs community where we live. It brought him community and friends. But he has a dog that he takes care of in his group home. He gets to go on walks with it, and he's able to, work refilling soda containers at a convenience store, which is one of his absolute favorite things to do. And I think those are all opportunities that he actually didn't have in high school, even though he does not, he is not going to live independently.

That is not in the future for him. He is, in his 50s now. So but he's still continuing to gain skills that are coming in this social setting with the community. And that's part of what I think is such a key piece of that transition to adulthood is what are you getting your fulfillment out of? What is kind of what are you participating in that's a little bit a little bit bigger than just you. What what were some of those extracurriculars that helped him continue to grow and then and then establish relationships and have a community? So definitely, I cannot say enough good things about Special Olympics.

Where I grew up in the state of Kansas as a rural state, obviously people are far apart, and that means that services are really difficult to come by in person. But everybody can run, everybody can walk, everybody can find something in the Special Olympics that they can do that they can participate in. And then every summer in Kansas, we would have the big state Special Olympics, where all the families would come together. And you'd see people you haven't seen in ages and reach out across those connections that are so far away, and you'd find out what everybody else had been doing in the past year.

And that was kind of one of the secret keys, I think, for my family, is also the connection between the families to know what extracurriculars are out there. So I think we started with Special Olympics. But, what he really loves is barrier free theater. Shout out in Manhattan, Kansas, always the barrier free theater where kids with special needs and adults with special needs can still participate in theater. That's one of my passions. And so cool, that Michael gets to do it. And then in addition to that, I think that's where he got kind of the, the social group, the friends that ended up getting him, into some of the other extracurriculars as far as, like arts or things that are a little bit more active in the community.

But it starts with one thing, and then you find the other options and you can kind of find your path. Yeah, I mean, I would I can't say enough about the important role of what we might categorize as recreation or extracurriculars, but they really are so central to the success of, of this period of, of life, especially right of, of the teen years and, in adulthood. And they deserve more attention and more, just more focus. So, yeah.

So finding things like musical, pursuits, experiences, arts, athletics. This is where special interests can be such a strength. And make all the difference if you find a way to, to pursue them and then to, build a community around them. Yeah. One of the most common situations that comes up is navigating the legal transition, towards adulthood, right as we get closer to 16, 17, looking towards 18.

At that point, a lot of families already know if we are going to be looking towards living an independent kind of pathway or if we're going to need some continued support, if we need some continued support, sometimes there is some reestablishment of care at that point. If care has been fragmented up until that point, to kind of guide the direction that we need to take, to protect, the child after they turn 18. Yeah. Meaghan, I know you work with a lot of young adults. And older teens. Yeah. I think, in some cases, the conversations and the visits where we're filling out paperwork for guardianship or conservatorship, those tend to go a lot more easily, than some of the kids who are looking to transition to college.

Or to, like, higher education settings or more independent living, where it feels a lot scarier for families because that jump is so big compared to continuing to live at home, and be supported by family. And I think, one of the things that's really helped me is a better understanding of what, supports and services tend to be available in the higher education settings. And being able to guide families that if your child's had an IEP, if they have these qualifying diagnoses, it doesn't mean that we've been so well supported in high school and then are just kind of left to float or flounder.

In that higher education setting, there are a lot of opportunities to carry over, some of the really great accommodations. Yeah, yeah. Let me get to just a couple other questions that I think, are great for families to be thinking about. So one is, this idea that development doesn't stop, development continues across the lifespan. So, Haley, you just, you know, talking about, like, there are always ways your brother, who's in his 50s, still learning new things, right? So his repertoire keeps growing.

He can keep kind of pursuing things that he's curious or interested in. What kinds of skills would you say can still grow and change in adolescence and adulthood? That parents might not be thinking about? You know, in addition to social skills, which I think really has has been his biggest growth, area is being able to, well, continue to develop actual social skills past 18, for sure. A lot of it actually, for him I feel has been a little bit fine motor, which is, something that may not be completely intuitive, but there is a very strong connection, between motivation and kind of fine motor skills and I think as your motivation changes with time, as your interests change, and as you find more purpose in some of the things that perhaps tasks that did not seem to have that much purpose when you were younger, when there were other people who could always do them?

I think there does become a point where you can feel that point of pride and start developing those skills yourself. Yeah. Navigating the community, I think, is one that a lot of families, think kind of has a landing point. But I think as, individuals grow and develop, again, I think motivation is a huge piece of it. So for one thing, I find a lot of autistic individuals like they crave the age appropriate things, they crave more independence. They crave the ability, to disagree with their families and like, do things a little bit differently that we expect to see in teenagers and young adult.

I do occasionally have some patients who are have a lot more anxiety around some of those skills. Even if we think that skill is very much in their wheelhouse of things that we could be doing at this moment. And perhaps we have a bit of anxiety about initiating that task in those kind of situations. I really do think that a lot of my families that have been very successful with instilling that skill, such as ordering from a restaurant, have done a little bit more scaffolding with it. And sometimes we have to kind of go back to observation and talking about it afterwards.

Yeah. You know, there's there's a quote that I love, from Maria montessori, The Educator, where she says, never do for a child what they could do for themselves. And it's hard. And, Meaghan, you touched on this a little bit where it takes patience. It takes more time. Haley. You know, as you said, it might take talking later, you know, to. So just creating time and being intentional about it. But that is the kind of that's what allows for the gradual progression to happen over weeks, months, years.

Well, both of you, in addition to your expertise in, you know, development and behavior, you are both experts in medical care for autism. And so I'm wondering how you think about physical health, you know, especially strategies that families can use in everyday life. I think nervous system regulation is a huge, huge piece of autism. We can recognize, as adults that we might not be at our best when we're sick or when we're stressed, or even when we're hungry. We might not be operating kind of at our fullest potential.

And I think for a lot of individuals with autism, this can be perpetuated. It can be even more challenging to overcome those, like, instances of dysregulation. So for me, in promoting health and promoting nervous system regulation, it's finding the things that really work for that. And I think that movement and exercise huge pieces of that. Yeah, I think about it as opportunities to build that mind body connection and potentially improve a little bit our skills with interception as well, as far as being aware at what our body is telling us, but also how we feel after moving, after being outside, after having a good morning of being in the air and doing our movement, do we feel better?

And oftentimes interception is so difficult with, kids who are on the autism spectrum or neurodivergent. It's so difficult, to kind of build that skill and awareness. But sometimes, cause and effect, you know, moments can really help with that. And that's part of regulation as well. You know, how many people, when they have a difficult day, feel a little bit better after taking a week off after going outside? Yeah. Another topic I'd love to get your thoughts on is dating and relationships. So families as understandably can often feel very unsure.

About kind of entering in this, this stage. And, I'm curious what guidance you typically give families about supporting autistic teens and young adults to navigate relationships safely, respectfully and successfully. So for me, I find that consent and teaching about consent and, body and who is in charge of the body and what moments very, very important and very key and can start from an early age. I have, I practice with, assent and consent based physical examinations.

I think it's really important to, to try to continue that message as much as possible with kids and parents. That there are, you know, people who this is appropriate for. And that list is very short, but you are in control of your body. And I think that there's a lot of situations where that actually does come up and then making sure we're being really direct dating, body changes, puberty. I mean, that's the wonderful thing is there are so many more resources now and such a better understanding of how key and important part this is that sexuality is a human right.

And so it's not a, it's not a, an aspect of adulthood that should be neglected for, for autistic adults. Yeah. Yeah. One more thing I hear a lot from families is frustration about the systems. You know, employment, education, health care and how there's a lack of appropriate, support in these, these major institutions. And systems. As autistic individuals, you know, transition to adulthood. There's there's fewer, health care services for, autism specific health care services for adults than there for children.

There are far fewer of course, sort of career and employment opportunities and, and often sort of educational support does fall off a cliff. You know, you a certain age and then there is nothing. So, what changes would you like to see from a societal perspective? The problem is also one of public perception, I feel, and to some extent, I think public perception is something that we need to work on improving so that we can have the policy support that we so badly need as a community actually in place, for our teenagers as they transition into that adult world.

Because, you know, it's so it's so difficult, I think, to be in that position where as somebody who has, you know, a brother who does have autism, who is older than me, it's so interesting seeing as a child the difference between how people kind of treated him implicitly when he was young and cute versus when he is very clearly an adult with a developmental disability. And I've got to say, actually, people have been very, very much like positively surprising. At the same time, there is a general change in perception, right, between a young child with a developmental disability.

And then you get kind of, you know, the the major league football teams come into the hospital to visit all the kids, and you've got your photos with your favorite singer or football player. And then once you kind of pass that 18 mark, at some point it becomes more, you know, there's more space left for you in public areas. And you sort of have to navigate the looks, perhaps changing a little bit with time. And I think fundamentally, that is something that we need to work on on some level as a society. I always think about accommodation. So we talked about nervous system regulation, and the environmental aspects of that.

Just being more flexible and willing to adapt environments or allow an individual to adapt to their own environment. So wearing a t shirt instead of a polo shirt, like if that collar is the rate limiter for you to be able to work in a setting comfortably and not become so overstimulated that you burn out and don't want to go back. That should be like a really small and easy change, but it can be Dr.'s notes and like medical justifications and letters just to even be able to consider it. Yeah. Well, in closing, thank you. Thank you so much for a wonderful discussion.

If you could leave parents with one message about the future for their autistic child, especially those with younger children who may not yet be thinking about, the future as much or about adulthood, what would you want them to know about the possibilities ahead? I always tell the parents of newly diagnosed children that we should continue to set our expectations high, and just adjust our understanding of what supports we might need to get there. I completely agree. I think it's so important to have a positive mindset sometimes when things really, are stressful.

That's difficult and you've got to just forcibly put one on. But it is evidence based to have a positive mindset. I think we can pleasantly surprise you with the fact that we've see so many kids who grow and develop so much, even over relatively short periods of time. You know, 4 or 5 years between three, four years old and eight years old. And look at what they're doing now. You'd never would have guessed it when they were 3 or 4 years old. There's so much room to be positive in a very statistically supported, evidence based manner, that if you don't kind of feel like you see it, I would encourage you to talk to your child's provider about it to see what they see.

And to borrow a little bit of their optimism. Beautifully said. Thank you so much. Well, to wrap up, I want to thank you both for sharing your experience and all of your incredible insights. One of the things I hope parents take away from today is that the transition to adulthood does not happen all at once. It's something we prepare for gradually through development, through supporting relationships, supporting health and all the environments that we create for children, adolescents and young adults. And with the right supports, really. We have seen so much in our practice, and we know that autistic individuals can build extraordinary lives filled with purpose, connection and joy.

So thank you, Meaghan. Thank you, Dr. Masterson, for being here. Thank you to our listeners for joining us on Magnificent Minds. And if you found this episode helpful, please share it with another parent or professional who might benefit. Until next time, take good care of yourselves and the magnificent minds in your lives.