Our Elizabeth and one of her favorites, Rachel Ray
As the parent of an autistic child, no ones knows better than I both the difficulties and expenses involved with raising a kid with autism. As a self employed person, it’s doubly tough as health insurance is a wallet buster under the best of circumstances, let alone when one of your kids has a disability. Autism isn’t nearly as expensive to deal with as other disabilities might be… we didn’t have to remodel our home to accommodate a wheelchair for example. Still there are plenty of extra expenses involved including doctors visits, medication and the like. Not to mention spending a fortune in Roseanne DVD sets (a particular love of Elizabeth’s).
I read an interesting article on CNN.com the other day about a parent group in Virginia that is pressing for a law that would require insurance companies to cover medical costs to treat autism. According to the article, similar requirements have been instated in Pennsylvania and South Carolina, where caps of $50,000 per child per year are in place. Naturally insurance companies say this will raise premiums. The article examines the case of a family who “in order to provide the best care” had the father quit his job to provide full time care for their child. The article states: “Although (the mother) has a good job in sales, the bills still amount to more than the family’s monthly income. Costs for (the child’s) applied behavior analysis, a relatively new therapy that has passionate advocates as well as critics, can run up to thousands of dollars a week, not including the cost for speech therapy, his medications and special schooling.”
I’m not sure how I feel about that. On the one hand, total refusal to pay for any kind of autism related costs by an insurance company is ridiculous. I believe kids with depression are covered for treatment, including drugs. Other psychological problems are also covered by many insurance policies. Autism is not just some phantom malady that someone may or may not have… it should be covered like other psychological disorders. In actuality most PROVEN treatments, like psychiatric care and meds, ARE covered by insurance in cases of autism… it’s the unproven, experimental treatments that are not.
The problem I see with it is in the article quote above: “Costs for (the child’s) applied behavior analysis, a relatively new therapy that has passionate advocates as well as critics, can run up to thousands of dollars a week“. The Lovely Anna and I have always looked with suspicion upon such treatments and questioned the effectiveness and science behind them. The “treatments” for autism are varied and numerous, but basically none have ever stood up to serious scientific testing for real effectiveness or consistent results. Some do help in certain cases, most others do not. Many “fad treatments” have appeared and disappeared over the years. Sometimes costing many, many thousands of dollars, these treatments usually have little basis in science and yet parents will flock to them no matter the cost and difficulties involved. There are auditory treatments, visual treatments, hardcore behavioral treatments, drug treatments, detoxification treatments, dietary treatments… the list is endless.
Why would a parent pay thousands of dollars a week for a treatment that is not even proven to work? You know that sick, helpless feeling you have in your stomach when your kid has the flu and is pale, sick and lying in bed with a high fever… and you can do nothing but sit by them and try to comfort them while you wait for it to run it’s course? Take that feeling and multiply it by about ten thousand, and then understand there is no course for the autism to ‘run’… it is usually for life, every day, day after day. It’s no wonder a parent will clutch at any straws that give even a shred of hope that it can make their child’s life better.
The Lovely Anna and I have not been immune to this thinking. We do read about treatments and we weigh the possibility of it’s effectiveness against it’s invasiveness and it’s application specifically to Elizabeth before we decide to try something. For a while there was a treatment we tried that was having success in some cases, which involved the injection of a hormone called Secretin. Secretin naturally occurs in the gastrointestinal (GI) tract, and both a synthetic version and a version derived from pig intestines were used to treat people with digestion problems. By accident it was discovered, when a doctor was using secretin to treat a patient with digestive problems who also had autism, that it caused the patient’s autistic symptoms to improve dramatically. Thus this unrelated substance became a very much demanded treatment for autism with no scientific study to support it whatsoever. The treatments were not covered by insurance (not for autism, but they were for treating GI problems), costs hundreds of dollars each and the right kind of secretin was very, very hard to find. Only the pig derived version seemed to work. There were no side effects except for a brief flushing and warm flash right after the treatment. We found a doctor willing to administer the secretin for autism, and gave Elizabeth two treatments. We found no quantifiable improvement and stopped the treatments. Later one scientific study found that only 25% of autistic patients showed improvement, and of those 100% also had GI problems… something that many autistic people seem to suffer from. Autistic subjects without accompanying GI issues showed no improvement over the placebo subjects. Several other studies demonstrated absolutely no evidence that secetin had any effect on autism whatsoever.
The gluten-free diet treatment is another one that is gaining popularity right now, especially thanks to Jenny “I cured my son of autism” McCarthy. The popular belief that this helps reduce or eliminate autistic symptoms stems from the belief that damage from immunizations like MMR or from preservatives in them like thimerosal cause kids to be unable to digest gluten and casein and these act like opiates in their systems, basically making them stoned all the time and/or short circuiting their brains. Many reports abound that such diets have “cured” or greatly improved people with autism. Once again, there is zero scientific evidence that this is the case. Putting Elizabeth on such a diet would be impossible short of locking her in a cell and feeding her through a slot in the door, because the only foods she will eat are very selective and mostly starches and fats. We would need to starve her before she would resort to eating gluten-free foods, and then we’d need to isolate her from any access to any foods that were not gluten-free. Short of rolling her around in a giant plastic ball I cannot see how we can do that. Also, any evidence these treatments do work tend to again only work on kids who also have GI problems, and Elizabeth has no such issues.
I’m not saying that those claiming these treatments worked for their kids are lying. A diagnosis of autism is one of “Autism Spectrum Disorder” (ASD)… the operative word being “spectrum”. Autism isn’t like the measles, where you have it or you do not. Cased falling into ASD range from those with little more than Attention Deficit Hyperactivity Disorder and/or Obsessive Compulsive Disorder to the sit-in-the-corner, hand-flapping nonverbal type. I believe there are multiple causes for multiple disorders all considered to be ASD and something found to work on one case many not work on the next 100 or even 1000 cases. Even though no scientific study has found a link between autism and GI disorders does not mean in certain cases there is NOT a link. Why else would secretin and dietary treatments work so well in a select few cases? I am convinced that in the future there will be well over a dozen different specific autistic disorders identified, like Asperger’s Syndrome and Fragile X is identified now, with specific causes pinpointed and hopefully specific and effectively proven treatments found. Right now it’s too big a spectrum for definitive answers.
Getting back to the insurance issue, I personally do not believe insurance companies should foot the bill for experimental treatments with no scientific prove of effectiveness. That said any treatment proven to help or improve the lives of autistic kids should be covered by insurance, in most cases IS covered currently. Elizabeth sees a psychologist and is on meds to even her moods and deal with her more destructive OCD problems. These are covered by our insurance, and improve Elizabeth’s quality of life quite a bit.
As much as I sympathize with the parents in that CNN article, The health care and insurance industries in this country are about as broken as they can be right now and lawmakers have bigger issues that need fixing than forcing insurance companies to pay for overpriced treatments that have a very small chance of working just to give people the feeling they are doing something to help their autistic children. I can tell you that if a treatment for autism surfaced that I truly believed would help Elizabeth I would sell everything I own to get it for her. We research, examine and wiegh what is available and occasionally try what makes sense for her. In the meantime, we love her and give her the best life we can provide… which is the job of any parent.
269 My cover art for the next issue of MAD, exclusive sneak peek from @entertainmentweekly website
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