June 22, 2013

The Costs of Autism

Posted in My Take on Autism tagged , , , , , , , at 10:16 am by autismmommytherapist

A while back I read an article on MSN money (truthfully, my husband sent me the link, most of the time I wouldn’t understand a thing on there) about the staggering lifetime costs of having a child with autism. I’m familiar with the statistics by now; that the costs to the country are around 137 billion; that outside therapies can carry a price tag of more than $50,000 out-of-pocket per year; that residential placements can cost $100,000 annually; that the total lifetime price of caring for a child, then an adult with the disorder, can total 3.2 million.

Generally my eyes start to glaze over when I read statistics about anything, but these numbers are personal. Very personal. You see, my eldest son resides in the category of autistic individuals who will require that lifetime care.

I can share with you all that his father and I are a bit short of the 3.2 million.

What the article does not include is all the ancillary costs that often come with the diagnosis, many of which had a direct effect on our family. After Justin was born I had fully anticipated returning to work when he was just over a year old. Just months after his first birthday we received his diagnosis, and our entire world changed in an instant.

A few weeks later, we learned that in Virginia Early Intervention did not provide any therapies that addressed the core deficits of autism, and what they did offer was literally one tenth of the number of hours Justin was supposed to receive to help him.

I realized I’d have to formally quit my job to deliver the thirty weekly therapeutic hours the experts recommended. I also realized going back to work when Justin eventually went to school was an impossible dream. At the time I labored as a Fairfax County VA regular education teacher. On a good week, I put in fifty hours- most weeks, it was closer to sixty.

Justin would need before and after care, and there was literally no one to provide it for him. I loved my boy, but the constant tantrums, the crying, and the bites and pinches bestowed upon anyone who displeased him did not make him an excellent candidate for anyone’s before and after care.

We’d already run through a few babysitters by that point, so that avenue was no guarantee either. We had no family in the area, no relatives able to watch our son mornings and afternoons. I can literally remember the day I sat on my couch in my living room, conflicting emotions racing through me. I was on one hand so grateful we could afford to live on a single salary, and that I had the capacity as a former educator to deliver Justin’s therapy to him.

On the other hand, I also remember the sinking feeling of knowing my administrator’s degree, and all the extra hours I served on committees at school and the leadership positions I’d taken, would most likely be for naught. My dream of following in my mother’s footsteps and having a career as an educational administrator would probably be thwarted by autism.

There was just no way around it- someone had to look after Justin, and that someone had to be one of his parents. Since Jeff made twice as much as his wife, it would have to be me. At least for the unforeseeable future, my working days were done.

Yet I’ll say this again- we were a lucky family to even have the choices we did. Many families, to this day, do not.

I think it’s clear from my essays how much I love my kids, and how proud I am of their collective character every day. I know much of what I write showcases their progress, and hopefully highlights this family’s ability to come to terms with autism and integrate it successfully into our lives. But I want to be careful not to paint a completely rosy picture of how life is for many families struggling just to make ends meet once autism has come knocking on their door.

Autism is often overwhelming. It is almost always very, very expensive. I’m writing this today because we were the fortunate family who received help from friends, from family; through the graciousness of my husband’s employer we were even able to relocate to New Jersey to address Justin’s educational needs, and be closer to family. Despite how insanely challenging the last decade has been, I consider our family to be lucky to have had any choices at all.

The cost of caring for an autistic individual is staggering. Often, the day-to-day challenges seem impossible to conquer, even when things are going well. And for many of us parents who know their child will require lifetime care, many years of which will be delivered when we’re dead, there is a sadness in that knowledge that resides with us always. At least it does for me, even when things are going well.

So please, if you know a family in your church or synagogue, your neighborhood, your child’s school, offer to help if you can. Babysit if you feel you can handle it, bring them a meal, offer a playdate for a sibling to give the mom or dad a break. At the least, when you see them, offer them a smile. As a recipient of several of these acts of kindness in the past I will tell you they mean the world, as all of these gifts helped me to navigate mine.

For whatever you can do, I thank you.

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