Autism and Money: How Do We Pay For All Of This?

I posted this on the Not The Former Things Facebook page a few weeks ago.

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 “What does momma do when she is so tired she can no longer see straight? Work on all the insurance company appeals of course. Watch out Health Fund – you do not want to mess with me today.”

And I loved all the comments! Apparently, it’s not just me, and it’s not just my insurance company.

Autism and Money

When we received my son’s autism diagnosis, I actually thought that having it would help us pay for treatment. I distinctly remember thinking, “At least now, we can see doctors and therapists without paying the total in cash. Thank goodness we have insurance.”

That lasted about a week.

Then, the reality hit. I tried to bill our insurance company for his occupational therapy – a treatment that was clearly identified and documented as necessary by his doctor.

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At first, they asked us for more paperwork.

Then, they asked the OT for more paperwork.

Five months, and five more monthly bills later, we received a letter saying that they would not be paying for treatment. Why?

Reason Code 10: Developmental Disorders are not covered under both the Major Medical or Mental Health plans.

When I opened the letter, I thought it must be a mistake. I mean, this is health insurance. In my mind (at the time – I have since learned the reality) autism is obviously something that health insurance covers. I mean, it’s HEALTH insurance.

We thought it might be a mistake.

My husband called.

I called.

I tried to bill again under his anxiety diagnosis code instead of autism.

$6900.00 later, we have once again been denied.

“Reason Code 10” makes me crazy.

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Autism and Money: How Do We Pay For All Of This?

I have written before about what I wish someone had told me as my son underwent neurological testing. I left the money part out, on purpose.

Mostly because it shouldn’t matter as much as it does. I want to be able to just focus on exactly what my child needs to be more successful and feel more comfortable in this world.

Most of the time, I do.

And, the truth is I would add something else to that list. This is also what I wish someone would have told me –

You may not always be able to do all the things you know would help him. You will have to choose this treatment over that treatment, and this doctor over that doctor – even when you know the choice is not the best fit for your child’s needs – because you just can’t afford to pay for every single thing out-of-pocket.

It’s just reality.

A friend of ours, who also has a son with autism, put it this way –

Autism is really a rich person’s thing.”

It’s sad. It seems like it should not be the case. But, I am finding that as time goes on, and the bills pile up, it just might be true.

We are in the middle. We are fortunate enough to make a living that provides well for our family, including health insurance. We do not rely on public assistance, public health care, or state programs. But, we are also not in an income bracket that allows us to pay thousands and thousands of dollars out-of-pocket every year. We know families on either side of us – some covered by Medicaid, some paying for three different therapists in cash, every week.

This isn’t easy for anyone, no matter what their net worth. I don’t think we somehow are unusual. In fact, I am writing this because to seems to be an issue across the board, in all income brackets.

And so, for now, we do the best we can because what else can we do? We find the best possible treatments, within our stretched thin budget.

We spend hours keeping track of bills and insurance communication, writing, calling, faxing, in the hopes that somehow, we will be granted some financial relief.

And we try to remind ourselves that God has always, always provided. He has never left us without treatment for my son. He has provided in ways we never thought possible –

 Extra jobs that we didn’t expect for my husband

Therapists willing to train me so that I can help my son at home

Wonderful church friends who have donated time and even money, to help our family 

He has provided without fail.

The pile of bills can’t possibly compete.


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  1. We go through much the same. I thought once he was diagnosed, we would be good to go. I found out, after visit 20 with his therapist, and visit 10 with his psychiatrist, just how wrong I was. We maxed out our $10K per family deductible that year. I just keep thinking it shouldn’t be this hard.

    1. Oh my goodness, you sound EXACTLY like us. I am praying right now for you and yours and provision and low co-pays and most importantly, that we would both trust in God first.

  2. You can’t do everything anyway. Parents of kids without a diagnosis have to or should choose wisely. So we pray to God for wisdom who promises to give wisdom without scolding us. (James 1). What common less expensive activities could be exchanged forbtherapy? We substituted piano lessons, swimming lessons, therapuetic horse back riding.

    1. Absolutely! Thank you for the gentle reminder that our hope is not in these therapies anyway, but in the power of Jesus!

  3. Sigh. This is such a familiar story. Savings account drained, 401K drained, medical flex account drained…all to pay for therapies over the years. Some help, some didn’t. Some days I get frustrated because it feels like nothing has worked, I want my money back and wondering if it’s ever going to get better. Then some days I see the progress he’s made and know it was money well spent. Sigh. The roller coaster of life with an Aspie’s kid.

    1. It is so crazy to me that it all costs this much, often with little results. Praying for you and your little one (and your savings account!) tonight.

  4. My son has Autism. And it has been a roller coaster. But I love him so much. Sometimes I look him and just cry. I had to leave my job because I had to always be there for my son. I wish a millionaire could give me One million dollars.l will be straight taking of my son. And making sure all the bills and outstanding bills are paid. He need so much. That would be a dream come true.I pray everyday that God will us a miracle.?My son is gets up real early like 3:00 in the morning so I’m also up with him. Sometimes he stays up. It can be so stressful. Blessing to you!!!☺

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