Friday, September 26, 2008

Is there an Autism for Dummies yet?

I have decided that I need one of those books cleverly titled "the Complete Idiots Guide to Asperger's" or something like it. An article somewhere had gotten my attention about how most new cases of autism are "acquired" now; that you rarely hear a story about a parent whose child has autism from birth nowadays. I don't know if it's true or not, but one reason it got my interest was because somebody said something similar when I was diagnosed with chronic fatigue immune deficiency syndrome ten years ago. And that's just when I was diagnosed; I had the damn thing six years prior and it just wouldn't go the hell away. But while I was researching all my symptoms and looking for treatment, Someone Important (I can't remember) in the field had said that CFIDS was the true "acquired" immune deficiency syndrome as opposed to the epidemic of AIDS caused by the human immunodeficiency virus (HIV).

Well I didn't get the point, quite frankly, of quibbling over semantics like that; as if there wasn't plenty of suffering to go around. But I had a sweet friend who set me straight by saying that yes, actually, I had completely missed the point like an idiot; the relevance of the word acquired was that it wasn't something I had at birth, and yet it wasn't something I "caught" from someone else. But at the same time, it was becoming epidemic. If you think about it that way, it's pretty scary, because if there's no genetic cause, and it's not something you can avoid by contact (like for instance, by wearing a condom), then how can anyone prevent it happening to them? It was especially worrisome in that light since there is no established cure for CFIDS to go along with that unknown cause.

The triggers of CFIDS are still not well known, and are not likely to ever be. CFIDS is not considered life threatening, at least not in the short run, and although it severely compromises quality of life in a lot of cases, since it's not contagious, it's not a big concern of medical researchers. Sadly, this statement appears to be a similarly held attitude about autism, and by the time it changes, I think it will be much too late for an awful lot of people as well as too late to stop the severe drain on our economy, even talking global economy here. I few days ago I read on one of the big established autism group websites that the new statistics for diagnosis are one in every ninety four boys. Holy crap. How can we possibly sustain a hit like that? My kids are PROBABLY going to college, but they are some of the lucky ones. Even if they finish their degrees, I constantly think about whether or not they can sustain the pressures of holding a job. Last week at a disability claim filing seminar I attended, one lady there who works in a community agency says she deals with aspies all the time who have their university education, but have a work history of losing jobs every three to six months.

I had been thinking about how I should look into treatment protocols for my six year old aspie since his older brother had an unsual (as if there's a "usual") treatment for autism that had very beneficial results. But since aspie the third has never been vaccinated, I have a feeling that I need to do more research on what will be appropriate for him. Well, I tell you, I need the cliff notes version. Honest to god, unless you are a scientist or a person of significantly above average intelligence or unlimited energy, the pool of technical data to swim through is going to require a lifeguard's certification. I love my kid, but holy crap I need a brain transplant. I mean, what does the common person do? So many of the blogs I read from autism parents are authors with degrees in law or medicine or freaking investigative journalism. They all seem to have many initials that go after their names. I have a scrawny little B.S. from a publicly funded school that is located in a state that is not known to be at the top of the intellectual hierarchy, and I am not a highly motivated self taught kinda gal. I truly believe my brain has atrophied since college days despite the almost constant stimulation it gets.

Hannah Poling, the one child with autism that has thus far been awarded damages for a link between her diagnosis of autism and a reaction to vaccines is the child of a nurse and a neurologist. I just don't have that fight in me. And yes, some financial support (say, a little bit of social security funds) would be nice since there isn't a lot of money involved at being the stay at home mom of three children with developmental disabilities, although there are lots of costs, but I would be happy to settle for some insurance coverage of treatments to improve their quality of life. If I could understand, and decide on, said treatment, that is. Lordy, looks like I need to go back to medical school. I don't even have the brain power to understand it, much less to get accepted.

Not all people are created equal. We just have a higher chance of being able to apply our brains to good use if we're born with one. Or don't fry it along the way.

4 comments:

  1. I just happened upon your blog and can relate as a mom of three who have special needs. Though none of my kids have autism, my daughter presents with similar symptoms though she has many other diagnoses instead. I love how you write. I want to encourage you NOT to censor yourself. I find myself doing that sometimes and I always regret it. Plus, it will be much more fun for me to read your blog if you swear a lot. ;)

    ReplyDelete
  2. Thank you for the comment. I guess you have outed me; you are my first official reader. I haven't told anyone else about my blog because I am completely without confidence in my technology skills. May my future readers be as kind as you. I appreciate your encouragement, but I probably will continue to struggle to keep my language a little cleaner for the sake of my family members that I might one day invite to read my blog. I am using mega profanity in spirit.

    ReplyDelete
  3. I have read that women with CFIDS have a much higher chance of having children with autism. Reports from CFIDS research often seem to find similarities with autism.

    You could try searching the CFIDS research archive here http://listserv.nodak.edu/archives/co-cure.html or look up the Whittemore Peterson Institute.

    ReplyDelete
  4. Thank you! I don't doubt that you are correct; I have often wondered if my weak immune system was a warning sign that my kids might be predisposed to some similar kind of problem, and it appears to be true so far.

    ReplyDelete

I LOVE comments. I am a comment junkie. Anyone may comment, but please be kind. Since I encourage teenagers to read my blog, I will most likely delete any comments that have too much colorful language or say really mean things. Also, my ego is fragile.