choosing DAN and considering going public

Ok, two things, quickly. Well, quick for me, the long winded narcissist.

One is that I have officially decided to seek assistance from a DAN doctor. I think DAN stands for Defeat Autism Now, but what I'm looking for basically is someone who will help my teenage aspie with biomedical treatments. We went down this road almost ten years ago, before I had ever heard of biomedical approaches to autism, before I really even new that my son had autism. Unfortunately, though I considered the treatment a great success and saw HUGE improvements in my son's health, we have moved clear across the country away from the doctor that we used back then.

T has had serious fatigue issues ever since his perforated appendicitis two years ago that almost killed him before we figured out what was going on, just in time for him to have life saving surgery. I would say that he definitely needed the heavy duty antibiotics that he had at the time, but my best guess is that fungus has returned to haunt his poor intestines, and I don't think I can battle it anymore myself without support. His regular doctor is not concerned, he is not used to seeing kids with unusual health problems, and T's last pediatrician suggested that we take him downtown to the big children's hospital in the city far far away which T will just HATE. And frankly, I don't expect them to use non traditional diagnostic tools or treatments. I don't think they'll look for the medical problems that are often markers in autistic patients as far as physical disorders, and I don't expect that they'll have an aggressive, useful protocol either.

So now I have to look for a rare specimen, especially out in the sticks: the elusive DAN doctor. They do not grow on trees. In fact, out here in isolationville, we have a hard time keeping any kind of generalist doctor. I have to drive 45 min just to find a garden variety endocrinologist for my diabetes. So this is going to be a difficult process, one with which I could definitely use help. So now I have another decision to make: do I go public?

I had started this blog with the idea that I would keep our friends and family updated on daily activities and progress with autism issues, as well as have an outlet for frustration that is often encountered in the education process of children with learning disabilities. But I seem not to go in those directions much with the posts. And in casting around for blog examples, I feel like I have a responsibility to some extent to raise autism awareness, and that's a path I'm going down too. I am very interested in reading the blogs of the autism community as it turns out; I'm getting lots of good information from them, and now I'm staring to wonder if I shouldn't become an official member of that community. I find some satisfaction in the notion of adding my voice to theirs, if not in an overtly political way, definitely as a show of support. But do I sacrifice my privacy for this loftier goal?

There is a selfish reason for staying private. Frankly, I think I'm both ignorant (in the uneducated sense) and boring, and drawing attention to myself is opening myself up to criticism I don't feel like hearing. But if I don't risk the bad, I can't have the good.

When I make the decision to go public, I will add a long blog roll of everybody that I read on a regular basis. That's if I can figure out how to do it. One of my favorite blogs is the "diary" of an aspiring teenage writer with asperger's who recently started college; he recently debated the merits of going public with his true identity and asked for input. This was my comment:

I worry all the time about my son, who is only 15 1/2, going public, because there is still so much he needs to learn about social interaction and protecting himself. He is still EXTREMELY vulnerable and incapable of handling a lot of situations where he might be bullied or manipulated. I think he will eventually get past this stage. The fact that you are at University and living outside your parents house (granted, with a lot of support) gives me a lot of hope that my kid will one day do the same. Hopefully this will be in the not too distant future, but I am approaching going public with his identity very cautiously because he is definitely slower in his social development than his academic development.

You were discussing yourself in a couple of earlier posts how there were some challenging incidents since University started regarding socialization. I think going public is definitely going to increase the amount of personal attention you get from strangers. I think you're very smart to consider it very seriously first. John Elder Robison is a fifty year old adult with asperger's who recently got published for a semi autobiographical memoir that was super. He mentions in his blog that touring to promote his book has improved his social skills many times over than anything else he has done in his life this far.

I was wondering whether or not he debated before publishing if he should use his real name. I bet now he is glad he did because he has been received very very well by the autism community AND the general community. I am curious as to whether or not you think your current peers would do the same. It's not just stalkers. Do you think you're ready to handle it?

This is a question I need to answer for myself. I don't know how long it will take. I know I want the benefits, but can I stand the rest?