Long-Term Planning for Your Child with Autism

Anticipating your child’s future doesn’t have to be overwhelming.

It doesn’t take long living in the disability world before someone asks, “What’s the plan for little Johnny when he grows up?” That’s a tough question, especially when you may be wondering the exact same thing. Thinking ahead can feel overwhelming, but it’s one of the most helpful steps you can take to build the right foundation for your child’s bright future.

The problem, of course, is that we can’t know who our children will be at 18. That’s why planning should be customizable and ongoing. Your child’s BCBA and other ABA clinicians can help set realistic, meaningful goals now that create the best possible path forward.

So how soon is too soon? It’s never too early. You’ll find peace knowing you have a flexible plan in place. Taken step-by-step, here are some things to consider as your child grows.

Early Childhood & Preschool

From birth to preschool, you are just starting to understand who your child is and how their autism may present unique challenges and opportunities. Focus on these foundational steps:

Schedule an appointment with a Developmental Pediatrician to understand how your child’s autism and any medical or genetic conditions may be co-occurring. A Developmental Pediatrician can help you track progress.
Enroll in an Early Childhood Intervention (ECI) Program in your area for therapy as well as to learn about community resources.
Research state waiver programs offering Medicaid, respite care, and other resources for individuals with disabilities to see if your child qualifies. Many have long waitlists, so it’s wise to get your child on the list as soon as possible.
Reach out to your local school district to learn about special education evaluations.
Explore ABA therapy for your child by touring different centers. BrightPath Behavior is happy to schedule an appointment for you to meet our staff and learn about our philosophy. Early intervention can build a strong foundation for long-term growth and development.

Elementary School

During the elementary years, you will learn so much about your child. You’ll notice what they love, where they thrive, and where they need support. Here are some things to focus on that will set them in the right direction:

Stay involved in your child’s education. Attend ARD (Admission, Review, and Dismissal) meetings, review IEP (Individual Education Plan) or 504 plans, and maintain strong communication with teachers and staff.
Talk about bullying with your child and how to respond if it is happening.
Stay on top of your child’s medical, dental, and mental health care. Things like ADHD, executive functioning challenges, and anxiety are common with autism and are treatable, so that they can live a healthy life.
Continue ABA therapy to build essential life skills, such as hygiene, grooming, and toileting, alongside behavioral and learning goals.
Begin financial planning. As you gain an overall understanding of your child’s disability, this is a good time to start saving for your child’s future. However, if your child qualifies to receive Medicaid, they can not have more than $2,000 in their name. Therefore, you need to meet with an attorney to establish a special needs trust.

Middle School

Middle school can be tough for any child, and often more so for those with autism. Puberty, new social dynamics, and increasing expectations all play a role. Here are some things to plan for:

Start discussing long-term goals with the school district. Schools often schedule a transition meeting, which may include assessing your child’s strengths, weaknesses, preferences, and needs at school, at home, and in the community.
Include your ABA therapist in these conversations, if applicable, as they can recommend goals such as chores, food preparation, and money management to foster independence.
Advocate for continued support. Some schools reduce accommodations and resources as children age, but your child’s needs may still require them.
Begin transition planning as part of the IEP by the end of middle school. The transition plan may include healthcare considerations. By age 18, you’ll need guardianship or medical power of attorney to continue accessing medical information and being involved in their care.

High School

The closer your child gets to adulthood, the more discussions will increasingly focus on life after school. Depending on which route they take, you can build goals into their programming to prepare them for the next stage of life.

Help your child understand their disability and how to advocate for themselves. These ongoing conversations will help guide them (and you) on the next steps, whether they pursue postsecondary education or training, employment, independent living, or other forms of community participation.
Continue refocusing on life skills such as hygiene, relationships, medical care, money management, and other skills they need. Paying attention to what they are most likely to pursue and exploring opportunities pre-graduation will help you be (and feel) more prepared.
Decide if learning to drive is appropriate and what steps you need to teach them if they are able.
Evaluate graduation options. Consider how your child’s disability may affect their graduation date. If they need a modified graduation plan, they may be allowed to continue in a public school program through age 22.
Consider legal changes at 18. Determine whether your child needs guardianship or a supported decision-making agreement. You may need to find an attorney to help you navigate this process.
Make a plan for managing finances. Saving for your child’s future may be complicated, especially if they are eligible for Medicaid. There are many types of trusts. You should work with an attorney and a financial advisor specializing in disability planning to set up a special needs trust for adulthood.

Adulthood

If you’ve been planning along the way, you’ll enter this stage with more confidence. Still, adulthood brings significant transitions.

At age 18:

Register to vote and for the Selective Service, if appropriate.
Apply for Social Security benefits if eligible.
Transfer from pediatric to adult medical care.
Consider working with a case manager or job coach to support employment and independence.
Learn about the possibility of an ABLE account for your child. If they receive Medicaid, however, they cannot have more than $2,000 in their name to continue receiving services. Therefore, make sure you have a special needs trust in place to manage finances.

At age 26:

Your child is no longer permitted to remain on their parents’ health insurance policy and will need to find their own insurance plan.

Continue supporting growth by building budgeting, transportation, and housing skills, and revisiting financial and legal plans regularly.

You Can’t Plan for Everything—And That’s Okay

Even the most thorough plans can’t cover every possible scenario. The key is knowing where to find help and staying flexible. BrightPath Behavior specializes in ABA therapy for children, but adult ABA programs are available if your child needs additional support later in life.

No matter what, make sure your estate planning, including wills and trusts, is up to date. Revisit it periodically to ensure it reflects your child’s needs.

Your child’s future may look different from than you once imagined, but that’s okay. They were made to live a life uniquely their own, and with your love, planning, and advocacy, that life can be full of meaning and joy.

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Note: The information provided in this article is for general guidance and does not replace professional advice. Please consult with a healthcare professional or therapist for personalized guidance.

How Soon is Too Soon to Start Long-Term Planning for Your Autistic Child?