When you’re raising an autistic child, planning for the future comes with a lot of unanswered questions. Will your child graduate? Go to college? Get a job? Live independently? What kind of support will they need as an adult, and who will provide it?
These are difficult questions to answer when you’re trying to predict what your child’s life might look like five, ten, or even twenty years from now.
In part two of her four-part Future Planning Series, Lisa Candera, The Autism Mom Coach, shares a practical approach to planning for an autistic child’s future without trying to figure out the next twenty years.
Using a three year planning framework, Lisa explains how parents can assess their child’s current functioning, identify the skills and supports that matter most, and prepare for upcoming decisions. She also walks through the major planning considerations at different ages, from preschool and elementary school through adolescence and adulthood.
In this episode, you’ll learn:
- How to use a three-year planning framework to make future planning more manageable.
- How to assess your child’s current functioning, identify priorities, and set realistic expectations.
- What to consider at different ages, including educational placement, life skills, graduation pathways, and transition planning.
- Why academic achievement is only one part of the picture when evaluating your child’s progress and future needs.
- What parents of teenagers need to know about adult services, benefits, legal decision-making, and residential options.
- How to reassess and adjust your plans when your child’s needs change unexpectedly.
The episode offers a practical way for autism parents to focus on the decisions they can make today while continuing to plan and adjust for the future.
Listen Here:
Transcript:
Hello everyone, and welcome to this week’s episode of the podcast.
This is part two of my four-part series on future planning. Last week, we talked about how to make decisions for our autistic kids when we can’t guarantee the outcome.
This week, we’re talking about a related question: How do I plan for my autistic child’s future when I have no idea what that future is going to look like?
I think what makes this so overwhelming is that when we think about the future, we’re projecting ten, twenty, or thirty years out from where our child is right now.
But where your child is right now is just a point in time. How they’re functioning changes over time. Maybe not at the pace we’d like, but there can be significant changes over time.
We tend to discount all of that when we’re projecting into the future. We’re taking the current version of our kiddo and imagining them in the workforce, or past the age of twenty-two, wondering what they’re doing and how they’re caring for themselves.
And when we’re faced with something as overwhelming as that, we tend to think about it for a little bit, scare the crap out of ourselves, and then shrink back and maybe do nothing.
My Early Experience with Future Planning
This was certainly my experience.
I remember when my son Ben was diagnosed at the age of two. He was diagnosed in January, and that following October, I went to an autism conference in New Jersey that was mainly attended by providers earning continuing education credits.
My thought was, “I’m going to learn as much as possible right now.”
I bought so many books to fill myself up with information so I could prepare for my child’s future. I signed up for all the sessions involving attorneys because I wanted to know everything there was to know about financial planning and planning for his education.
I remember sitting in these sessions with parents whose children were much older than my two-year-old. They were asking all kinds of questions about Social Security, funding, and other issues.
But in my mind, I wasn’t there yet. I was nowhere near that.
At the time, I was funding a 529 college savings account for Ben. And I started to wonder, “Should I be funding this account?”
So I asked one of the attorneys, and his answer was, “We don’t know.”
He explained that I could continue funding the account and that there might be other uses for the money if Ben didn’t go to college, such as vocational programs. Alternatively, I could transfer the plan to another child or a cousin.
But ultimately, he didn’t know whether my money was best spent funding a 529 account at that time.
And that answer wouldn’t be known for years to come.
Just that one question, and the uncertainty surrounding it, made me feel so overwhelmed that I remember stepping back from future planning altogether. I didn’t think about it again for years.
At that time, I couldn’t have known that legislation would later establish ABLE accounts, which are tax-advantaged savings accounts for eligible individuals with disabilities. Those accounts didn’t exist when Ben was first diagnosed. Rules allowing certain rollovers from 529 college savings accounts to ABLE accounts would also come later.
All of this is to say that uncertainty isn’t going away.
So instead of vacillating between overthinking and stressing ourselves out about a future we can’t predict, and giving up on thinking about the future altogether, I want to propose a middle ground.
Think in terms of the next three to five years.
When you’re thinking in those terms, you’re basing your decisions and planning on the child in front of you and what they could reasonably achieve in the next three to five years.
Instead of trying to think decades ahead, you’re looking at where your child is now and what you can work toward over a defined period.
Step 1: Establish Your Child’s Baseline
All of this starts with establishing a baseline.
I recently had a conversation with a client who has a six-year-old who, up until this point, has been homeschooled. She’s trying to figure out what types of therapies and what kind of school would be appropriate for her child.
My suggestion was that if she was considering the public school route, she should begin the IEP evaluation process. If she wasn’t planning to pursue public school, she could seek an independent evaluation.
At the very least, she needed a baseline of her child’s current functioning, strengths, areas of difficulty, and skills to focus on.
That’s where all of this starts.
Your child’s baseline is going to inform your goals, and those goals will differ dramatically from child to child.
The important part is understanding where your child is today because that’s the foundation for the decisions you’ll make.
Step 2: Identify Your Priorities
The second step is to identify your priorities.
These will differ from child to child, and they’ll evolve with age.
For example, when Ben was first diagnosed, our number one priority was communication. We wanted him to be able to express his needs to us, and we wanted to be able to understand him.
Communication was such a priority because of the epic meltdowns he was having when he couldn’t communicate basic needs.
By contrast, there are parents of medically complex children for whom communication isn’t the first priority. Maybe their number one priority is helping their child develop the ability to swallow or tolerate different food textures.
I also work with clients whose children are very academically capable but struggle in social situations. For those families, the priority may be developing their child’s ability to socialize and communicate with others.
Priorities will differ from child to child, and they’ll evolve as children grow.
Step 3: Set Realistic Expectations
The third step is to set realistic expectations.
By limiting your planning horizon to three to five years, you can make more realistic assessments because you’re not trying to imagine something so far into the future that you have little information to work with.
Instead, you’re looking at the child in front of you and assessing the skills they need and could develop within a defined period.
This is where IEPs can be really helpful. They identify areas of need, establish goals, and track progress so you can see how far your child has come and reassess over time.
With these three foundational pieces in place—establishing a baseline, identifying priorities, and setting realistic expectations—let’s look at the major decisions that come up at different ages.
Ages 2–5: What Should You Prioritize Before Kindergarten?
In the early years, your decisions will likely involve a lot of evaluations, therapies, and developing the foundational skills your child needs.
Three big priorities during these years are communication, behavioral regulation, and toilet training.
And not surprisingly, these skills overlap quite a bit.
As I mentioned, my number one priority with Ben after diagnosis was communication.
I was using PECS and sign language to help him communicate his needs to me and his father. I also wanted to show him that we understood what he was trying to tell us.
He had such a short fuse when he couldn’t communicate what he wanted or when he sensed that we didn’t understand him.
Focusing on communication helped reduce his meltdowns and improve his behavioral regulation. Over time, he was also able to communicate more about going to the bathroom. These skills really did work together.
Now, communication, regulation, and toilet training are all important, and you may feel pressure to work on everything at once.
But you have to start where you are.
I’ll be honest. I didn’t focus on potty training until Ben was almost four because it wasn’t the biggest fire to put out at that point.
We had bigger issues we were dealing with.
For whatever reason, I felt pretty confident that Ben would eventually learn to use the toilet consistently because he was spending time in school, seeing his peers use the bathroom, and learning those routines. And that’s exactly what happened.
I know it’s not that straightforward for everyone.
But at that time, potty training wasn’t my priority. Communication and emotional regulation were, because those were the issues most profoundly affecting my child and our family.
I also work with families of children under five whose biggest priority is being able to go out in public.
They may have multiple children who want to go to the park and participate in family activities, but their autistic child’s dysregulation makes those outings difficult.
For those families, the focus may be building tolerance, developing skills, and finding ways for their child to participate successfully in family activities.
Other families are working on pretend play to foster interaction between their child and other people.
The point is that priorities are going to depend on your child and what’s most important for their development and your family’s daily life.
Ages 6–10: Is the Educational Program Meeting Your Child’s Needs?
During elementary school, one of the biggest considerations is your child’s educational placement, the type of program that will meet their needs, and the level of support they’ll require.
For some kids, general education with accommodations is appropriate. For others, specialized instruction or a different educational setting may be necessary.
It’s a complex decision that depends on your child’s current functioning, available resources, and your priorities.
I remember being presented with the option of placing Ben in an autism-only classroom after kindergarten.
At the time, I didn’t believe he would benefit from that setting for several reasons. Instead, I thought he would benefit from being around same-age peers who had stronger skills in certain areas so he could learn from them.
So I chose general education.
Because Ben had needs that could have warranted an autism-specific classroom, he required a one-on-one aide to participate in the general education setting.
I knew he might not be able to keep up academically with his peers, but that wasn’t my focus at the time. In fact, academic achievement never became my primary focus.
My priorities were his ability to integrate socially, build social skills, and regulate himself in the classroom.
That was my focus for a number of years.
But my priorities evolved as Ben got older.
By middle school and high school, the general education setting was no longer appropriate for him. He became hyper-aware of his peers and could recognize that they were understanding information faster than he was.
He constantly felt behind, and that really affected his self-esteem, particularly as anxiety and OCD became more significant issues.
I couldn’t have predicted that just a few years earlier.
In my mind, if he could participate in general education when he was younger, of course he’d be able to continue as he got older.
But decisions and priorities evolve as our kids age.
And that’s why planning for the next few years is so useful. Frankly, you can’t predict everything beyond that.
I also could never have predicted that so much of Ben’s middle school experience would take place in my living room.
I spent so much time worrying about middle school and trying to prepare him with tutors and other supports because he wanted so badly to remain in general education.
But then COVID happened, and much of his middle school experience took place at home.
It’s another example of why putting pressure on yourself to figure out your child’s future ten or twenty years from now isn’t particularly helpful.
Ages 11–15: When Your Child’s Needs Start Changing
Now we’re talking about middle school and the beginning of high school, and this is where I see so many autism families shifting course.
For one thing, almost half of my clients are moms of girls who weren’t formally diagnosed with autism until middle school or high school.
For many of these girls, their ability to mask their symptoms was overwhelmed by the intense social pressure and anxiety that came with this changing environment.
Say goodbye to the relative simplicity of elementary school, to the extent that it existed for them.
In middle school, the social rules change. Expectations shift. And then there are hormones.
There’s a lot happening during these years, and it may require you to reassess decisions you’ve already made.
Maybe your child is academically gifted but struggling with anxiety so intense that they can’t sit in a classroom for any meaningful period. Instead, they’re making multiple trips to the bathroom throughout the school day.
When that’s happening, you need to reassess priorities and expectations based on these new developments.
Does your child need additional support with social skills? More access to the school counselor? Modifications to their IEP? A one-on-one aide? An out-of-district placement?
These are all things to consider if your child hits middle school or high school and suddenly seems to hit a wall.
Or maybe your child is doing well socially, but you’re noticing that they’re falling behind academically.
Their executive functioning skills aren’t where they need to be, and that’s where they require support.
In that case, you may be looking at IEP modifications and ways to help your child develop the skills they need to organize homework, prioritize tasks, and manage academic responsibilities.
Depending on your child’s intellectual functioning and support needs, you may also need to reassess their IEP goals around life skills.
And this is also the age when you need to start thinking about what happens after high school.
What educational pathway makes sense for your child? Are they working toward a traditional diploma or another type of completion credential? What are the implications of those decisions?
These are things to begin thinking about during the middle school and early high school years.
Ages 16–22: Preparing for Adulthood
This is where planning becomes very concrete.
There are four major areas I’d focus on.
First, education and employment.
What happens when your child leaves school?
Will they attend college? Pursue vocational training? Enter the workforce? Need supported employment? Participate in a day program? Continue receiving school-based transition services?
You want to understand the options and what your child will need to prepare for them.
Second, adult services and benefits.
If you haven’t already, this is the time to investigate programs such as Supplemental Security Income (SSI), Medicaid, developmental disability services, and vocational rehabilitation.
For families of children with severe or profound support needs or significant intellectual disabilities, this process may have started much earlier.
The important thing is understanding what services may be available, the eligibility requirements, and when you need to begin applying.
Third, legal decision-making.
When your child turns eighteen, they’re legally an adult.
Depending on their abilities, willingness, and circumstances, you may need to consider supported decision-making, powers of attorney, guardianship, or conservatorship.
These are significant decisions, and they should be considered in light of your child’s individual needs and abilities.
Fourth, living arrangements.
Where will your child live?
Will they attend college and live on campus? Live independently with some support? Continue living with you? Need a staffed residential setting?
And what services or funding will support that arrangement?
As you’re thinking through these areas, you also want to consider what skills would be helpful for your child to develop now based on where they may be headed.
For example, if your child is determined to go to college, whether that’s a four-year or two-year program, you might prioritize independent living skills, executive functioning, organization, and perhaps driving.
If your child is likely to continue receiving school-based services after eighteen, what will their day look like? Will they continue living at home? What programs are available, and who pays for them?
If your child may eventually live in a group home, what skills will help them participate more independently in that environment?
For example, I’ve taught Ben how to use Uber, prepare simple breakfast foods, pack his lunch, and go grocery shopping.
These are practical skills that can support independence, regardless of what a person’s living arrangement ultimately looks like.
Ages 21–25: Supporting Independence in Adulthood
Once your child turns eighteen and becomes a legal adult, your ability to make decisions on their behalf will depend on several factors.
Are you their guardian or conservator? If so, you’ll have certain legal decision-making responsibilities.
If you’re not, your involvement will depend on your adult child’s preferences, your relationship, and their willingness to involve you or accept your suggestions.
No matter where you fall, I think the focus at this stage needs to be creating and supporting independence for your child, whatever that looks like.
For some parents, that means watching their kids make mistakes and experience consequences.
And that can really suck.
You can’t necessarily call the college professor to explain why your child’s paper was late. You can’t call their employer to figure out why they were let go.
Sometimes you have to let your adult child deal with life on life’s terms.
And that can be incredibly difficult, especially when you’re parenting a vulnerable young adult.
By contrast, if you’re a guardian or conservator, you may still be spending much of your day making decisions with and for your child.
Since Ben turned eighteen, I sometimes feel like his full-time executive assistant.
And I don’t love it.
But regardless of your circumstances, there are legal and financial arrangements you can put in place to prepare for your child’s future, both with and without you.
I’ll address those in the next episode.
The Takeaway: Focus on the Next Three to Five Years
The three-to-five-year framework for future planning gives you a way to focus on what’s presently in front of you instead of scaring the crap out of yourself with all the what-ifs about the decades to come.
By doing this, you can build the foundation of skills and supports your child needs to become more independent and successful, with the understanding that their needs will shift and evolve over time.
In fact, that’s pretty normal.
My experience raising Ben, along with what I’ve seen coaching autism moms over the past seven years, is that our kids’ development doesn’t follow a straight line when they’re younger. And it doesn’t get any straighter as they get older.
One thing I’ve learned from my own experience and from working with so many families is that our kids develop on their own timelines, not ours.
Try to remember that when you’re confronted with worries about the things your child isn’t doing, the things you don’t think they can do, or the things you’re afraid they’ll never do.
They’re developing on their timeline, not yours.
So take some of the fear out of future planning by focusing on the next three to five years.
Next week, we’ll talk about the things you can be doing right now to plan for your child’s future.
Talk to you then.
