Article first published as The True Cost of Autism: It's Not Just Money on Technorati.
A lot has been made in the debate about Autism and healthcare, because of the potential burden it will place on insurance companies, who will most likely trickle that cost down to everyone. I'm not going to get into the debate as to whether or not insurance coverage for Autism is right or justified, but rather I want to talk about the costs of Autism. Or, more specifically, the overall toll Autism plays on families.
Applied Behavior Analysis (ABA) therapy is the only therapy or "treatment" that seems to work with children with Autism. It uses the Behavioralist method of teaching by encouraging correct behaviors with rewards. It also uses the Environmentalist teaching method, in that practitioners eliminate distractions from the classroom environment, making it easier for the children to learn. It's great, when done correctly, and it can be expensive.
In order for it to work, you need to have a psychologist on staff, your therapist, an occupational therapist (manages sensory needs as well as motor skills), and a teacher. Most often your staff to student ratio comes very close to 1:1, and that's expensive. These are all highly trained individuals that have worked hard, studied hard, and spent a lot of money to get their education customized to work with these children.
Now, many good school districts, much like the one we are currently in, have great programs that provide all this as part of the Public school system. Most do not, from what I understand. Therefore parents need to go to special private schools, often costing them between $28,000 to $50,000 a year per student. If they have two children, it's doubled, and so on for each child on the Spectrum. It's not the most encouraging sign.
And, of course, these schools and supportive school districts are few and far between. That means either driving long distances, or moving to locations that have support for children on the Spectrum. This limits job mobility, housing opportunities, and a feeling of control that many people have naturally. That goes to piece of mind, and is a hidden stress point on families with children on the Spectrum.
But therapy isn't the only thing that is expensive! When the child goes home, they need to continue the same routines that they are being taught at school. Therefore parents need to modify the home environment to match, as much as possible, the school environment. For some families, that means providing a "sensory room", where children can pull out of their fog by being provided the sensory stimulation or deprivation they need, depending on their sensory needs. So dark rooms, soft music, indoor swings, trampolines, full body massagers, and a ball pit are just some of the things that can help children. Some of those things are pretty cheap, but others can be expensive.
Then there are utilities. One interesting sensory need of our child is a need for showers, regularly. He loves the feel of the water on his whole body, and needs that feeling of being encompassed. If we lived by the ocean, he would spend all his time at the beach. But here in the Rockies, we have showers. Of course, living in a desert, all that water is not cheap, and we have resorted to planting low-water plants in order to save as much as we can for our son. Other children may need constant music or massagers working on their whole body, and that uses a lot of power.
Then, of course, there is emotional toll. Putting aside a "judging" public and their need to judge other's parenting skills, it's emotionally draining to chase down a child that doesn't look you in the eye, doesn't want to be touched, and try to get them to perform their tasks. This constant wearing down takes it's toll emotionally on parents, and at one point it was believed that Autism in the family raises the risk of divorce by 80% (I question that personally). While I don't believe it is a threat for marriages as much (particularly since both parents feel needed), it can cause stress with extended family. Add to that the Holidays, and you have quite a stressful situation for parents on the Spectrum.
This isn't a cry for pity, or a call for social "justice" by making other people give money to support the few. It's simply a call to the realities of having a child with Autism. Add to that the satisfaction of seeing your child perform feats worthy of a child twice their age mentally, those fleeting moments of having a child focus on you and smile, and the visions of a child who improves at school every day eventually becoming a successful contributor to society. All these things bring joy to the family, and I wouldn't change it for the world.