The Mighty Logo

I Have a Son With Autism and Don’t Know What’s Best for Him

The most helpful emails in health
Browse our free newsletters

Have you ever been thrown into a job that you were completely unqualified to do, but had to do it anyway? I know that describes parenting in general, but it’s been extra obvious to me lately as we continue to navigate Charlie’s diagnosis and what that means for him.

The thing about autism I never realized before now is that there is no “autism doctor.” There is no specialist you can go to for regular check-ups. In reality, there is an unending list of therapists with varying specialties and a thousand methods to address the challenges that come with the disorder. And don’t even get me started on the insurance. There is literally everything from dietitians, physicians, teachers, therapists, and even swim instructors, camp directors and horseback riding programs, all toting their methodology as being best for children on the spectrum.

Where do you even start? What is right for your child? I’ll be the first to admit I have no idea what is best for my child. I don’t know what he needs; I don’t know how he’s feeling because he won’t or can’t tell me.

While we wait for his medical assistance paperwork to be approved, all we can do is try to support his anxiety and behaviors at home. The confusion never seems to end though. Is this because he’s 4 and 4-year-olds are unruly at times? Or is this autism? Should we challenge him on XYZ, because it’ll help him grown and learn? Or will challenging him trigger a panic attack? I might as well flip a coin, because your guess is as good as mine.

A truth I can’t seem to get through my head is that it doesn’t matter what typical development looks like anymore. Typical is not necessarily typical for Charlie. Sure, he’ll adhere to some trajectories, but for the most part, he is going to be on his own path through his own forest. Maybe my frustration isn’t frustration at all; maybe it’s the fear that we will lose him in that forest.

As the past several months have gone by, Charlie has started to shut out activities he once enjoyed like puzzles, Legos and coloring. He spends an obsessive amount of time each day focused on letters, spelling, writing and pointing out letters.

Most attempts to leave the house have turned from resistance to sobbing meltdowns. Over the past few weeks, he’s developed a few new behaviors that my friends have suggested could be anxiety from moving or because of his sister Ginny’s surgery. It breaks my heart to know he’s hurting or confused, but he doesn’t know how to process or communicate it.

This is where I feel unqualified for this job. I don’t know how to help him right now. I’d like to think that getting medical assistance or reaching out for therapeutic staff support will be the magic bullet, but I know it won’t be. It’s only part of the equation.

So much of this has to do with us, my husband Jeff and me, realizing and accepting that for Charlie, his world is completely normal and any insinuation contrary to that comes from us and others around him. Even if I can’t do anything else right now, I need to keep reminding myself of that.

A version of this post originally appeared on All Four Love.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Originally published: May 20, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home