April 12, 2007 at 9:03 pm · Filed under Minds, Brains, & inbetween + Fetal & Pediatric Medicine
The next time I read anyone saying that “autism is not a disorder but simply a different way of being,” and using the stupid label neurodiversity (or worse, the reverse term neurotypical), I’m pointing them to this study:
Autism Costs Society An Estimated $3 Million Per Patient, According To Report
Each individual with autism accrues about $3.2 million in costs to society over his or her lifetime, with lost productivity and adult care being the most expensive components, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.
read the rest of the article at Science Daily
Sure we should treat autistics like human beings rather than broken misfit toys to be fixed. That goes without saying really. As does the idea that autistics should be supported in a manner that best supports their mindset.
Cure = Genocide!?!
There is no way to cure autism once it is set in, and I doubt we’ll ever find a cure that works that way. However, there may be hope to tackle it earlier through gene therapy or other means during the fetal development process. Some of the anti-cure zealots of the Autism rights movement refer to this form of prevention as genocide.
Now where they do have a bit of a point is when we only have the technology for prenatal diagnosis but not treatment. In this situation the mother is given only the options of either going forward with the pregnancy or termination. this is the scenario put forth by the reactionary people behind the The Autistic Genocide Clock.
Of course all this assumes that all our diagnosis tests are really accurate and highly predictive, which is a BIG if; usually the level of prognostication is low unless it’s a blatant physical defect. Most likely the parents will be told something like: “The test results show that your fetus has a XX% chance of developing autism. This is not a guarantee that your child will have autism and we don’t know where on the spectrum of autism your child will be. It could be mild or it could be severe” After, this it’s up to the mother.
It’s not good news to be sure, and some mothers will terminate out of fear for the worst. However, even if it’s at the mild end of the spectrum it still requires a lot of support both emotionally, physically, and financially, which some mothers may feel they couldn’t handle. Even in this situation it is the mother’s choice; just like when it’s the mother’s choice when she doesn’t feel she could handle a “normal” baby. It’s really not that much different.
March 21, 2007 at 2:47 pm · Filed under Online Health Care + Fetal & Pediatric Medicine + Blogging about blogging
Patient blogs are a way for patients to communicate to their friends and family and journaling can help them get through what may be a difficult experience. It can also benefit the hospital by offering self-generating patient stories that potential new patients can be directed towards.
From the Fetal Treatment Center’s website statistics, I know that we already have fetal treatment patients that blog about their experiences using various free blogging resources like blogger (I know because we get links from their blogs).
Caring Bridge - pros and cons
At the NACHRI conference, I talked with some people from Caring Bridge, which is a non-profit that offers blogging services for patients. Caring Bridge is a good service, but they have one fatal flaw: all the patient’s pages are automatically locked private. They can choose to give friends and family a password to see their posts, but they can’t choose to make any of their posts public.
Personally, I’d rather see the service offer the possibility for patients to choose make some of their story public. Without this feature, there is nothing for potential patients to read. Caring Bridge has a sponsorship package so that hospitals can pay to put their logo on their patient sites, but this is useless from a marketing perspective if the pages are all locked private. Supposedly, public post functionality is on the table, but it won’t be ready this year. Frankly, the ability to set a post to private or public is a common feature to most blogging services, so it really makes no sense for me to encourage patients to use Caring Bridge—as much as I’d like to support a non-profit like them.
The problems with hosting our own
I’d like to have a nice single solution to direct patients towards. We could host our own but that would require time and effort. Also, having it hosted here creates a rather strange legal situation. As the patient tells their story, they are also potentially letting out patient data. On any other blogging site this is fine, but if it is under our banner it creates a weird legal gray area in regards to HIPAA Compliance.
I will have to do some additional research to see if what the best solution is: a single interconnected solution that is easy for patients would be ideal. If anyone out there has any ideas let me know.
March 14, 2007 at 7:30 pm · Filed under Minds, Brains, & inbetween + Fetal & Pediatric Medicine
The tour presentation went exceedingly well with rave reviews—though frankly it’s hard for it not to with Dr. Harrison, the “Father of Fetal Surgery” giving the talk. It was filmed too which is excellent, and I’ll endeavor to link to it once it’s edited and online.
The main point of Dr. Harrison’s talk was how intrinsic fetal diagnosis and therapy is going to be for the future of medicine. Currently, most people think of fetal treatment solely as the surgical treatment of birth defects. However, as neonatal diagnosis improves, we will be able to diagnose more and more childhood diseases before birth. As a result, this opens the door for potentially starting treatment in utero using stem cells, gene therapy, and other minimally invasive treatments. There is research going on right now into treating sickle cell anemia before birth, and there is hope that various autoimmune disorders might be able to be treated this way.
Even more radical is the evidence that many adult diseases, such as heart disease and diabetes, may be triggered initially not just by your genes but also by your placental environment. Thus, it may be possible to detect and hopefully prevent some adult diseases through monitoring for adverse in utero conditions or potentially some form of fetal treatment.
The effect of maternal stress on the fetal brain is actually a hot topic in neuroscience. Some studies (1, 2) point towards it being a predictor for depression, schizophrenia, ADHD, learning disabilities, you name it. And other studies (3) indicate that mild to moderate material stress might actually have a beneficial effect on fetal development. Of course, it’s also hard to tease apart the genetic component: does the child have a cortisol sensitivity due to increased cortisal levels in the fetal environment or does the child just have the same stress sensitive genes as the mother?
