Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Money, Money, Money.

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A new study shows that their is a greater prevalence of autism spectrum disorders amongst the children of the higher socioeconomic groups in the US. This isn’t the first time this connection has been made, and many commentators made the conclusion that the richer you are (at least in the US) the greater access to medical professionals who could make the diagnosis. The difference with this study, however, is that the findings were the same even amongst those undiagnosed. Essentially, autism is a rich person’s syndrome. My initial reaction was a snort of derision. Rich? I wish!

Then I thought about it more carefully. From even before our daughter was born, we have managed to live on one salary. When we first married I was unable to work due to my immigration status, and we got used to living on one income. When Pudding was born, I was able to choose to stay at home with her full-time. That is a choice many families can’t afford, and one I’m very grateful for.

Our fortunes changed with Pudding’s diagnosis. We are a Foreign Service family. Pudding and Cubby were born in a tiny European country. Weeks before we were supposed to move to Bolivia, we noticed differences with Pudding’s behaviour.  Differences that were eventually given the title of Asperger’s Syndrome. It wasn’t that she suddenly developed these changes, just that we recognized them for what they were. No Bolivia. Suddenly we were back living in the states and paying a mortgage and the high cost of rent of the DC metro area. We could just about manage though, and this time we had to. Two kids means two lots of day care. The only preschool in the vicinity that would provide appropriate care for her needs required full time attendance, at a significant cost.

Along with the diagnosis come recommended treatments. We were soon referred to therapists who combined RDI and Floortime therapies. The cost for the initial consultation? $2200. The price of the full evaluation to determine her specific needs? $8500. No, we didn’t have it. Nor the hundreds of dollars each month to continue the therapy. Insurance doesn’t cover these services. They do however pay for speech therapy and occupational therapy for developmentally delayed children. It has taken us a year to find pediatric occupational therapy covered by our insurance, and we’re still looking for speech therapists with availability. For as long as we could, we did both “out of network” which is medical insurance-speak for out of pocket. The going rate for these services in our area is $125 per 45 minute session. Yes, you have to be rich to afford these therapies.

So, what if you aren’t rich? In the US, each state will provide early intervention services for children up to 3 years of age at low cost, sometimes for free. When your child turns 3 years of age, they are entitled to a free and appropriate public education. The quality of this can vary a great deal depending on where you live. We chose to rent a home in the school district with the best reputation for autism services. Even so, Pudding was misplaced in a general special education setting with teachers with no formal training in autism spectrum disorders. We watched for a few months as she became more anxious and withdrawn, losing valuable skills. Finally she was moved to a preschool autism class where she is thriving. Many school districts don’t offer these kind of services, though. We are fortunate to have that choice. Choice seems to be the privilege of those who can afford it.

We watch Cubby closely for emerging signs of autism. We struggle to provide adequately for one child’s needs, but doing this twice over seems unthinkable. I read all I can about RDI and Floortime therapies and do my best to implement them at home, and hope, and hope.

We have one more choice. Something that day by day is getting to be less of a choice, and more of a necessity. We bid in the next few weeks, and hope to go back overseas.  Autism is a rich person’s syndrome in the US, and we can’t afford it anymore.  Hopefully we can go somewhere else where we can.  My heart goes out to all those whose financial situation leaves them with no choices.  Giving your children what they need for the best chance in life shouldn’t be the privilege of the rich.  A world where our children have the therapies to live happy and healthy, productive lives?  It’s a rich man’s world.

Written by Spectrummy Mummy

July 20, 2010 at 4:35 pm

One Response

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  1. […] support from Spectrummy Daddy, and our family and friends. I’ve written before about the cost of having a child on the autism spectrum, but there are other costs than financial too. The […]

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