Being an Advocate for Your Autistic Child

An advocate can be defined as a person who pleads on behalf of another’s cause.

Plead can be defined as making an emotional appeal.

Lastly, a cause can be defined as a principle for which a person or group is dedicated to fighting for.

So, an advocate is a person who makes emotional appeals on behalf of someone else based on a principle to which that person is dedicated to fighting for.

Sounds like a role one would only accept after realizing the considerable responsibilities it entails, right?

Wrong. If you are the parent of a child with autism, you didn’t get a choice. You received no training. You became an advocate – diagnosis day one.

You had to learn to flip an emotional switch into fight mode with no advance warning: to fight insurance companies for services, to fight your child’s school system for accommodations, to fight your community for equal access, and the list just goes on.

The exhaustion you suffer has been compared to the fatigue of a combat soldier. It’s real.

You spend at least two hours more per day caregiving and advocating for your child than parents who don’t have a child with exceptional needs.

At first, navigating this role was intimidating. When you walked into your child’s early IEP meetings, you were alone facing a roomful of people supposed to be on your team, but often it didn’t feel that way.

When your insurance company cut your child’s therapy hours without warning, you spent hours on the phone trying to fight for those hours back, but you didn’t know how.

Over time you evolved. You became more assertive, albeit aggressive when necessary. You began to carry the weight of your child’s needs like that of a combat soldier in his heavy fatigues and artillery.

Carrying that weight helped you build the emotional muscle necessary to be the advocate for your child. You grew the strength to overcome intimidation and uncertainty, paving the way toward conviction and confidence.

And while, yes, advocacy wasn’t a role you ever sought, it is a role you have embraced. You stop at nothing to advocate for your child today, tomorrow, and until hopefully, one day they can advocate for themselves.

And for that, dear friend, I tell you this, wear that advocacy as a badge of honor. You’ve worked hard for it, your child has benefitted from it, and you figured this out all on your own.

You should be proud!

Until you have a child with special needs, you have no idea the depth of your strength, tenacity, and resourcefulness. – Author Unknown

Published by

Amy Nielsen

Amy Nielsen is a former children's librarian of nearly twenty years. She now spends most of her time obsessively pounding on a keyboard. She is the author of It Takes a Village: How to Build a Support System for Your Exceptional Needs Family, Goldilocks and the Three Bears: Understanding Autism Spectrum Disorder. Her upcoming YA Worth it debuts in May of 2024. She is also a freelance writer for The Autism Helper. When she's not writing, she and her family are most likely crusing the waters of Tampa Bay.