What I am Afraid of as a Mother of Autistic Sons

I’m a mother to two amazing boys, both diagnosed on the autism spectrum—one with lower support needs, who is fully mainstreamed in school, and the other, my younger preschool-aged son, who requires more intensive help. While I am proud of my older son’s progress and feel tremendous hope for his future, I carry a persistent fear when I look ahead to my younger son’s trajectory.

At home, my younger son is in early intervention and receives applied behavior analysis (ABA) therapy, fortunately covered in part by our insurance. He is making real progress, and our therapists and educators are caring and dedicated. Still, each step forward brings a new wave of questions: What will his future look like? What will school be like? Will the protections and supports we’ve come to count on still be in place when he legally must start school in about two years?

The Bigger Picture: Why the Law Matters

Under the federal law known as the Individuals with Disabilities Education Act (IDEA), children with disabilities are entitled to a Free Appropriate Public Education (FAPE) in the least restrictive environment (LRE). (Cornell Law School — IDEA overview)

IDEA covers children from early intervention through age 21 in many cases (Parts C and B). (Early Childhood Technical Assistance Center — IDEA) It ensures evaluations, individualized education programs (IEPs), inclusion with peers whenever appropriate, and procedural safeguards for families. (Ask Resource Center — Six Principles of IDEA)

Because of this law, families like mine have hope: that once my younger son enters public school, he will not be overlooked and the system will be required to meet his needs, not just hope he “catches up.”

My Fears — What Keeps Me Up at Night

1. The transition into school-age education

In two years, my younger son must begin school. While I am not choosing to homeschool, I will be entrusting his education to the public system. My older son’s success in a mainstream setting gives me confidence—but for a child with higher needs, so many things must align: understanding his sensory and communication profile, ensuring staff know how to support him, and making sure his IEP is meaningful and not just a formality.

2. The fear of losing protections

The IDEA has faced threats of funding cuts and weakening enforcement in this political cycles. If federal oversight wanes, or if states are given too much discretion without accountability, children like my son could lose critical supports. The law’s spirit—that all children deserve equitable access to education—depends on enforcement and funding.

3. Inclusion vs. token placement

It isn’t enough for my son to be in a mainstream classroom. He needs real supports to participate meaningfully. IDEA requires education “designed to meet the unique needs” of each child and provide more than minimal progress. (Ask Resource Center — Six Principles of IDEA) But too often, inclusion means sitting in the room without receiving true engagement or support.

4. Long-term outcomes

While I focus on preschool and elementary school now, my mind leaps ahead. Will he be able to live as independently as possible? Work? Have relationships? IDEA’s intent is to prepare students for “further education, employment, and independent living.” (Cornell Law School — IDEA overview) If the foundation is weak now, catching up later becomes harder.

5. The emotional and economic toll

Beyond the systemic worries, there’s the personal cost. Therapy expenses, constant advocacy, and emotional exhaustion take a toll. If the system falters, families like mine bear an even heavier burden—especially those without the same resources or access.

What I Am Doing — and What I Hope

• Partnering with therapists and educators early: Communication and collaboration are key.
• Learning about rights and laws: Knowledge is the most effective advocacy tool.
• Fostering my son’s strengths: Encouraging his curiosity and joy, not just correcting his challenges.
• Building community: Other parents of autistic children have become our greatest allies.
• Planning with flexibility: We know plans will evolve, and that’s okay.

My hope is that when he enters school, it’s not an anxious leap into uncertainty but a confident step into a system ready to meet him where he is.

“It isn’t enough for my son to be in a mainstream classroom — he needs real supports to participate meaningfully.”

A Call to Action

If you are a parent of a child with autism—or simply someone who believes in equitable education—know that these protections matter. IDEA exists because parents demanded change. These laws work when enforced and can erode when neglected.

Stay informed. Engage with your school district. Ask questions. Advocate. The future of inclusive education depends on all of us.

Resources for Parents

Below are trusted resources for families of children with autism or disabilities navigating education and rights:

• U.S. Department of Education, Office of Special Education Programs (OSEP) — Official federal information about IDEA, Part B and Part C programs.
• Wrightslaw — Comprehensive guides on special education law, advocacy, and IEPs.
• Autism Speaks — School & Education Resources — Practical tools for parents navigating the school system.
• Council of Parent Attorneys and Advocates (COPAA) — Supports parents and advocates working to protect the civil rights of students with disabilities.
• The Arc — Resources for families planning for their child’s long-term future, including transition to adulthood.
• National Disability Rights Network (NDRN) — Find local protection and advocacy agencies in each state.
• Parent Training and Information Centers (PTIs) — Every state has at least one PTI center offering free help with IEPs and IDEA rights.

Conclusion

I love my sons fiercely. I am proud of how far they’ve come and hopeful for all that lies ahead. But as a mother of autistic boys—especially one with higher support needs—I carry fears about their education, rights, and future.

With love, advocacy, education, community, and the protections afforded by law, we can give our children the best chance to thrive. Every child deserves more than minimal benefit — every child deserves the opportunity to succeed.