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What happens when my child with autism turns 18

What happens when my child with autism turns 18

Turning 18 is a big moment for any child.

But, in some ways, it’s an even bigger moment for the people who have been taking care of them for the last 18 years—the parents!

The age itself is arbitrary. (Are 18-year-olds really full-fledged, mature adults? I’ll have to get back to you on that.) But in the eyes of the law, this is the moment when a person officially steps into adulthood. It’s a brave new world. And with that new world come new responsibilities, new expectations, and plenty of new challenges for the adult child and their parents alike. 

For the parent of a child with autism, however, watching your child approach their 18th birthday can be especially bittersweet.  Read on to learn more about how to prepare your child and your family for their big 18th birthday. 

On the one hand, you’re excited for them and what the future holds. 

You can look back on all the good times you’ve had over the last 18 years, all the progress you and your child have made, the doubts you’ve faced and the hurdles you’ve overcome. 

Over the years, I’ve worked with so many parents who are relentless advocates for their child’s well-being. In addition to being full-time parents of a child with special needs, they have also learned to navigate a complex and often opaque system of healthcare, education, clinics, and government grants. And as frustrating as navigating those challenges can be, it’s that much more rewarding when your child is happy, healthy, and successful. 

On the other hand, there’s the fear of the unknown. 

For many children, turning 18 is the moment when they are expected to take on greater independence. It’s the time for careers, college, relationships, and moving out of the nest. 

Many individuals with autism can and do achieve these hallmarks of independence. But autism is a spectrum—an individual’s ability to communicate their needs and perform necessary tasks may vary greatly—and the path to greater independence is often unclear, as is the parent’s role. 

In my experience, parents of children with autism are often some of the world’s best caretakers. But they also tend to constantly self-evaluate, perhaps even more than other parents. 

Am I doing the right things for my child? Is this the right time? 

Have I set the groundwork for them to live a good life? Do they have the skills to live as independently as possible? 

Is my child going to miss out on something important because of me? 

By the time their children approach their 18th birthdays, that self-doubt has usually calmed from a boil to a simmer. Parents have accumulated so much knowledge and so many skills over the past eighteen years that they feel confident—or at least more comfortable—navigating their child’s care.

But then their child approaches the threshold of adulthood, and it seems as though everything is about to change. Here’s a new world, one that plays by an entirely different set of rules—legally, financially, and ethically. 

As a parent who has been such a strong advocate for their child—one who has learned to navigate the legal, financial and ethical landscape of childhood—there are few things more frightening than watching them enter the unknown territory of adulthood.

It's ok not to be ok with this. 

The first thing I tell parents who are feeling overwhelmed by the prospect of their child’s 18th birthday is that their discomfort is perfectly normal and understandable. 

I’m a Board-Certified Behavior Analyst (BCBA). Every day, I work with children with autism and their families to develop their social, cognitive and behavioral skills, and to help them reach their goals. 

While my perspective is, of course, different from the parents’, I spend a lot of time working closely with their children, and I become emotionally invested in their well-being. How could I not? I see these wonderful children and their families working so hard to live a fulfilling life. I want them to succeed—not only because it’s my job, but because I care.

When one of these children approaches their 18th birthday, I feel a microdose of the trepidation their parents feel. Although I’ve seen countless families successfully navigate their child’s transition to adulthood, I still feel that fear of the unknown—a small glimpse into what the parents must be feeling. 

But here’s the thing: While adulthood certainly comes with its own challenges, they are by no means insurmountable. And the very same skills that parents like you have used to help your children navigate childhood—proactivity, patience, and persistence—are the skills you’ll need to help them navigate adulthood. 

Another thing? The transition to adulthood may be a time of uncertainty, but it’s not only that. It can also be a time of incredible growth and exciting opportunity. Things that are fundamental to a person’s identity, like a job, a home, and a strong sense of belonging within the community, become available to your child in new ways. It’s a time to strengthen their independence, their relationships, and their understanding of the wider world. It can also be a time for the entire family to reevaluate their own wants, needs, and goals for the future. 

For children with autism, the path forward may not be clear-cut. But ask any parent of any child and they’ll tell you—it never is

Adulthood always starts with uncertainty. That’s what makes it scary, but it’s also what makes it beautiful. It’s about exploring the world and finding yourself, moment by moment, along the way.

Practical tips for when your child with autism turns 18

I wrote this blog for two reasons: One, because I want parents everywhere to know that what they’re feeling right now—probably some mix of overwhelmed, afraid, excited and uncertain—is perfectly valid. (Hopefully you already knew that, but I feel like the emotional side of parenting is underrepresented. We need to talk about it!) 

The other reason? To offer some practical advice—things you can do, as a parent, to navigate your child with autism’s transition to adulthood. 

Maybe you’re reading this blog because your child is about to turn 18. Maybe they already have. Or maybe they’re nowhere near adulthood, and you’re planning ahead for their future. 

Either way, I want to walk through a few of my top tips for parents. This is by no means a comprehensive guide—for that, I recommend checking out Autism Speaks’ Transition Tool Kit; it’s a detailed, well-researched piece—but I have included some helpful pointers and answers to questions parents frequently ask. I hope it brings you confidence and clarity. 

First tip? start with self-advocacy!

To what degree should your child be involved in the planning of their future? 

Well, let me put it this way: To what degree do you want to be involved in the planning of your future?

Of course, we all want to control the course of our own lives. And while some individuals with autism may have a harder time communicating their wants and needs, they obviously have them. 

As parents, we make decisions for our children all the time. But adulthood is the time for greater independence, and just because some adults with autism have a harder time articulating their desires doesn’t mean they should be denied their autonomy. 

Why is autonomy so important? For one, having agency—the experience of enacting change within one’s environment—is pivotal to the human experience, the formation of identity, and one’s ability to live a fulfilling life. Children enjoy being taken care of, to an extent, but adults thrive on a much greater degree of independence. 

Autonomy is also important for a very practical reason: You may not always be able to care for your child. This is a tough reality to face, but the fact is, due to health or other logistical reasons, there will be times when your adult child must make decisions without your guidance. Ensuring they have the skills to do so is essential, and you can start building those skills at any time. 

How do you build skills for independence? While I won’t go into too much detail here, I recommend starting small and starting young. Have your child work on a household chore, practice money skills at the store, and have them make decisions, like what movie the family will watch on Friday night. 

Encourage them to branch out and try new things—or to perform tasks on their own that you’ve helped them with in the past, such as bathing. If they’re having trouble with these tasks, which they very well may, then get granular; break the tasks down into step-by-step processes, walk your child through the process, and, as they begin to master different steps of the process, gradually remove yourself. Remember, independence is built brick by brick. 

By starting with simple tasks, you can help instill confidence in your child as well as the concept of autonomy by showing them how fun and rewarding independence can be. Later, you can build on that foundation to help them master increasingly advanced skills, which may translate to greater independence in adulthood. You’ll be amazed at what your child can do! 

Lay the groundwork to maximize their independence

In my opinion, independence is—to a degree—something we learn, rather than something with which we’re born with.  

Everyone starts their life as an infant—completely, utterly dependent. As we grow and experience new things, we gradually take on skills that allow us to live independently, with adulthood marking the culmination of all the learning we’ve done. 

Individuals with autism are no different; they want to be independent as much as anyone. And while their capacity for independence varies greatly, I encourage all parents to build the habits and skills that will help their adult children live with as much independence and confidence as possible. 

How do you build that independence? I already discussed a few tips in the last section, but here I want to focus on some of those hallmarks of adulthood, such as working at a job and living in a home your adult child can call their own. 

Employment

A good job is more than just a way to make money; it’s also a key social outlet and an important part of an adult’s identity. I suggest starting employment opportunities with your child in their teens. High school is the perfect time to try internships, volunteer opportunities, and job sampling; many employers—including, perhaps, the school your child attends—actively hire and support individuals with special needs. 

Look for job opportunities based on your child’s skills and interests. If they love bowling, maybe they can work behind the counter at the local bowling alley. If they’re into movies, they might enjoy taking tickets at the local theater. By enabling your child to work at a young age, you can help build the skills and habits they’ll use as adults.

Housing

Housing options for individuals with autism vary widely, depending on the individual’s needs and preferences. Your child may continue to live with you into adulthood. However, depending on their needs, that can be emotionally taxing on you, while inhibiting the child’s independence.

When it comes to housing, I suggest working backwards. Start with a vision for your child’s future living situation, outline the skills your child will need for that environment, and focus on building and practicing those skills. 

There are many housing options for individuals with autism that allow varying degrees of independence, from group home living—in which a group of individuals live in a home with varying degrees of supervision—to supported living, in which your adult child lives independently in their own home or apartment while receiving tailored services from caregivers. Like everything else, the right housing option all depends on the person, but it’s something for which you should begin planning well ahead of time. 

Community living 

It’s never too early (or too late, I should add) to get your child out and about in the community. 

Help them meet new people, practice social interactions, enroll them in sports teams and other group activities based on their interests and abilities, encourage them to help you shop at the grocery store, take public transit, and, while you’re out in public, teach them the basics of safety. For example, your child should know what to do if they get lost, how to ask for help—verbally or non-verbally; some individuals carry a card with emergency contact information—and how to navigate areas surrounding your home. 

Defining your legal relationship with your child with autism after they turn 18

If your child has full capacity to handle all of adulthood’s responsibilities, skip this section. If they can shop for groceries, pay the rent, file taxes, commute to work, and properly manage their medical care, then there is likely no reason to establish a special legal relationship.

If, however, your child has limited decision-making capacity, then you should consider establishing a legal guardianship and conservatorship—which you should attempt to establish before they turn 18. (Ideally, you will start this process at least six months before their 18th birthday.) 

Alternatively, you may opt for powers of attorney, which you can establish any time after their 18th birthday. 

Let’s take a look at both options.

Adult guardianship and conservatorship

An adult guardianship and conservatorship are often grouped together, though not always. In a guardianship, you (the parent or guardian) are appointed to make personal decisions on behalf of your adult child, such as housing and medical care. A conservatorship establishes a similar relationship regarding finances, in which you, the conservator, have nearly full decision-making power when it comes to your child’s finances.

A guardianship and/or conservatorship may be appropriate for cases in which the adult child’s capacity to make decisions is severely limited. However, I would caution parents to carefully consider their drawbacks before pursuing them. 

I am an autism expert—not a legal expert—and I recommend consulting an attorney to discuss your options. However, in my experience, guardianships and conservatorships involve costly, lengthy court processes in which multiple experts must be brought in to testify and attorneys must be compensated for hours of work. 

Once established, maintaining a guardianship or conservatorship can be time-consuming and resource-intensive, as caretakers must regularly report granular details of their decision-making and provide up-to-date records verifying the principal (adult child) is “legally incompetent” or “incapacitated.” 

Beyond that, a guardianship and conservatorship may not be the best option for your child, especially if they have some degree of decision-making capacity. While it’s certainly appropriate in some cases, obtaining this control over your child’s life comes at the near-total cost of their autonomy. They may not be able to vote, marry, or make a variety of personal decisions. 

Powers of attorney

One alternative to guardianship and conservatorship is powers of attorney, a legal document in which your adult child appoints you, their parent or guardian, to make certain decisions on their behalf. 

Unlike guardianship and conservatorship, obtaining a power of attorney is relatively easy and low-cost, as long as your child has the capacity to understand its significance and is willing to grant you the power. It’s also more flexible; with power of attorney, you can make certain decisions on behalf of your child, while they retain control over other areas of their life. (For example, you may control their medical decisions and finances, while they can choose where they live, where they work, who they vote for, etc.) The only potential drawback is that your adult child, as of their 18th birthday, may grant any adult their powers of attorney. Technically, they could choose someone other than their parents or their parents’ approved guardian. It’s a risk, but it’s also rare. 

The right legal path for you and your child all depends on their capacity to make decisions and care for himself or herself. However, no matter which route you take, I always recommend involving your child in the process to the degree in which they’re capable of participating.

This is not only your future, but theirs. As an adult, they should have a role in shaping it. 

Make your own needs & dreams a part of the plan

Look, I get it. As a parent, you’ve probably put your child’s wants and needs over your own countless times before. Having someone tell you “Don’t forget about self-care!” isn’t going to change that.

But here’s the thing: While your child’s transition to adulthood is a pivotal moment for them, it’s also an opportunity for your entire family—including you!—to take stock, make a plan, and evaluate how you all want to be living in the near future. It’s a time for positive change, and no one should be excluded.

I’ll leave you with this: When planning your child’s future, make your own future a part of that plan. When you’re thinking about their goals and dreams and how they can achieve them, also think about your goals and dreams. They may correspond more than you think. 

Once your family has a vision of your shared future in mind, work with one another, your friends, and your entire support community to bring it to life. You’re not alone on this journey, and that’s one thing that will never change. 

About Forta 

There are many organizations designed to help children with autism and their families achieve their goals, but Forta  is a little different. 

What makes us different? First, we practice effective and results-based ABA therapy, optimized by smart technology and good people. Our teams use AI to supplement their own expertise and develop a treatment plan tailored to your child’s needs. 

Another thing that makes us different? We bring our services to your home. That means your child can work one-on-one with a highly skilled therapist to learn lifelong skills and develop positive behaviors in your own space, where you and your child are most comfortable. 

Right now, Forta is offering in-home therapy for children, as well as training programs for parents. If you’re looking for a personalized approach to autism therapy, designed to help everyone in your family lead a fulfilling life, take a closer look at our services.  

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