The Cost of AUTI$M

Research funded by Autism Speaks has provided the most comprehensive and current estimate of autism’s costs to individuals, families and society: * The lifetime cost for an individual averages $2.4 million when autism involves intellectual disability and $1.4 million when it does not.

This is not a kickoff to my GoFundMe page. I promise.

When you first get a diagnosis, you read books and it suggests that therapy roughly costs 90–150K a year. Most people that engage in full-time therapies spend upwards of 6 figures.

It does.

And you need to start very early. At 2 or 3. ABA, OT, Speech, etc — need to start immediatedly and last for many years. For ABA to be effective they suggest about 40 hours a week!

And the therapists are expensive. A Board Certified Behavior Analyst to run the program cost 100/hour…and even the recent college grades who might do the therapy likely cost about 50/hour.

The good news is, for us, most of those books were written even a few years ago. And the public school system has made good strides in our area. Much of the ABA is done ‘in school’ for us…but not for everyone.

And you still need more. Luke had a program of 3 days a week of therapy after school. We’d like to do more. We can’t really afford it.

In recent months, it seems Luke should really get Occupational Therapy too. I think our insurance pays for some of that at least.

There are also lots of extra doctor’s visits and therapies and such. And the compelling nagging question “Don’t you want to do EVERYTHING POSSIBLE?”

You hear a lot of stories about Autism leading to divorce and bankruptcy. For better or worse, we decided to ‘do our best’ and provide a stable home for Luke and not drive ourselves to bankruptcy with therapies and such.

I work from home, Amy’s at home. We’re with him and stable and not providing any other distractions. We might not get wall-to-wall therapy, but the choices we made provide him with that.

Again, only a strong school program made this possible. We get a lot of these services 5 days a week and over the summer.

In the last couple of years, insurance has made a turn around. It has begun to pay for some of these therapies.

Maryland passed a law that their state insurances need to cover ABA. 43 States now have these laws. Unfortunately, that only covers a handful of insurances. There’s no federal law yet. There should be. (I think Hillary Clinton in her recent has proposed such, point for her i guess)

I have Writer’s Guild of America Insurance. A great plan. A great union (and one I’m super proud of which to be a member).

In the progressive state of California(a state who has long since been ahead of the curve and had ABA — Applied Behavior Analysis — coverage in their laws), I was 100% positive they would cover it. This is the insurance of my Hollywood idols — Spielberg, Lucas, Lawrence Kasdan, William Goldman surely would be ‘ahead of the curve’ when it comes to understanding the needs of special needs children.

Turns out no.

It gets a little complicated but after much trying I was informed that because my insurance is private…they can legally opt out of state mandates. And they do. And since there’s no federal requirement, they can. Sorry.

My ‘ahead of the curve’ progressive artist-supporting union organization, doesn’t cover the only therapy science supports for my son, the therapy most states, the military and many large empathetic organizations have begun to cover.

Last week, I got a letter in the mail how they were now offering various Transgender services. Good for them. Really. Again, so proud they’re ahead of the curve. And good to see they can evolve and it’s not all about money. Sometimes they add things because they feel it’s ‘right’.

I was told because they didn’t have to do so(by law) — even if I formally protested — it wouldn’t change. Based on stuff like the Transgender change, I suspect many of them would be in support of such a change if they knew the whole story. If I had more time or a career where battling for the next job wasn’t so critical, maybe I’d take the fight further. Maybe I still will. I should. If not for me, for the next me.

Hopefully a increasingly prevalent disorder like Autism (1 in 60-ish) will have the only ‘scientifically proven’ therapy to help covered soon. It seems like it’s moving there in the rest of the U.S….I just hope it ends up there soon so we can afford to do what’s best for our son.

And here is where I have to give a shout-out. The reason insurance has changed and schools have better programs and awareness is increasing, is because of those passionate parents who fought battles in the early 2000s.

They paved the way for my son to have what he needs without crazy fights and lawyers or bankrupting families.

Often, they fought battles that they won too late to help their own situation.

But they won for me and my son.

Whenever I see those fighting moms, battling the system for what’s right, I’m not sure they realize how big an impact they’re actually having. They think they’re working for their own self-interests but often times they’re laying a path for children 10 years down the road.

Keep fighting. My family is better because of you.

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