Unusually Good Asthma Doctor

A little while ago, I went to get a new prescription for my asthma medication. While I was talking to the doctor about my prescription, I asked her about how to make sure to take my medication regularly, something I've had doctors get mad at me for not doing even though it's executive dysfunction that makes me go off my medication and I really can't help it (I thought I'd blogged about that before, but all I could find was this).
She didn't give me any advice on that (which is too bad because I have the same problem with antibiotics) but instead she told me that I actually don't need to stay on my asthma medication if I have no symptoms. I thought the daily puffer (Flovent) was a preventative and the one I take during an actual asthma attack (Salbutamol) was a fast-acting symptom relief one. Which is technically true, but it turns out they actually do different things, whereas I thought they did the same thing over different time ranges. Flovent apparently reduces swelling, while Salbutamol stops spasms. Anyway, it turns out if I'm off both medications and breathing just fine, I don't need to take them - even the Flovent - but if I'm having to take the Salbutamol (and therefore, clearly having symptoms) I also need daily Flovent. So my instinct that I kept fighting against to only take my medications when I feel sick is actually right in this case.
What I really like about this doctor is that, unlike every other doctor I've seen for pretty much any physical problem, she treated me like a knowledgable person, who not only needs to know what to do but also needs to know why. Exactly how I'd treat a patient if I became a doctor. I love being treated like I'm capable of understanding things.

Disrespecting Patients

I've read about the ways that 'patients' are disempowered by caregivers, but I don't think I've been on the receiving end of it until recently.
A couple days ago, I had a second asthma attack bad enough for the emergency ward. (I sure hope this doesn't keep on happening.) Anyway, while in the emergency ward I experienced two different kinds of disrespectful treatment, one from a nurse and the other from a doctor.
Firstly, the nurse came up and asked how I was doing. I gasped out 'not very well' and he replied 'nonsense! You're fine!' I tried to explain that I was most definately not OK, but he just continued saying similar things. I understood that he was trying to calm me down, but I found it really disrespectful and patronising to be contradicted about my experience, and it left me feeling really scared that I might not get proper treatment because they might think I was faking it.
After he left, I overheard an interaction between him and another patient which made me realize that rather than just being hypersensitive, I was reacting to a real problem in this man's behavior. He was talking to someone who'd just had a stroke. First he cajoled them to 'give him a smile', and then said 'I knew it was hiding in there somewhere'. Later he said 'come on, big strong girl like you, you can push against my hand'. I found it really offensive how he was treating this other patient, and I would not be surprised if that patient found it demeaning as well.
Awhile later the doctor came. We told him about how I had another asthma attack about a week or two ago and had taken three days of prednisone and been using Symbicort 2-8 times a day (at least 2, more if I had trouble breathing). He first said 'why did you only take three days of prednisone?' in an accusing manner, and later lectured me about overusing the Symbicort, saying I should only take 2 a day. In both cases, I'd been following the doctor's orders - the emergency ward had given me the prednisone and arranged for my regular doctor to see me just as I finished it to decide on a more permanent treatment, and my regular doctor had told me to take the Symbicort at least twice a day and more if needed, but not more than 8 a day. I thought we'd made that pretty clear, but he seemed to think I'd done something wrong.
When he told me what to do (take Symbicort twice a day and use a regular symptomatic as needed), he said I should do as I was told so I wouldn't end up there again, which is pretty ridiculous since I did what the doctors had told me and still ended up in the emergency ward.

Emotional Differences

Firstly, I'll just mention that a couple weeks ago I developed really bad joint pain. Shortly afterwards I had a bad asthma attack and ended up in emergency. They gave me a temporary prescription that helped me breathe but made it very hard to sleep, and now I'm on an inhaler which also helps me breathe with less (but still some) insomnia. And the day before yesterday I developed some kind of pain in my right arm that really interferes with typing, but seems to be gone for the moment (I hope). All that interferes a lot with blogging. [Note: Actually, it appears the earlier medication may have been slow to get out of my system, because the insomnia has steadily decreased until now I'm sleeping about as well as I usually do (which is mild difficulty falling asleep).]
Anyway, I've been getting counseling lately, with a psychologist who specializes in sexual abuse but knows very little about autism. Fortunately, she knows it, unlike many autism 'experts', so she's teachable.
Anyway, the second-last session I had, she was trying to give me a piece of advice which I could tell didn't apply to the kind of mind I have, but whenever I tried to explain, her reply made it clear to me that she was misinterpreting my response in the framework of an NT mind. The situation was this:
Many sources will say that in attacks of self-hate, you need to identify the thoughts that are triggering that feeling. I've also heard that if you can replace 'I feel' with 'I think' and have a sentence that makes sense, then it's not a feeling, it's a thought.
I don't know if this is true for NTs, but it's not true for me. But I can't really explain how it isn't true. Attacks of self-hate are triggering by a brief flash of a feeling, sometimes loosely linked with a picture. The feeling is of people watching me and judging me. But I don't think "People are watching me and judging me". It's like I feel the 'essence' of eyes staring at me in a judging, disapproving way. I very often have feelings like this, which are emotions combined with a kind of tactile 'essences' sometimes accompanied by visual images. There are no words to it unless I try to articulate how I'm feeling, and thereby place words on it. It's like saying 'I see a cat' in response to visual and tactile fur, raspy tongue, vertically-slitted pupils in green or yellow eyes, pink nose, etc moving in a cat-like pattern. The experience of interacting with a cat is not words, you simply put words on it.
So I was trying to describe this to the counselor, and not being very successful. And it was especially frustrating because I knew she was trying to help - I couldn't just think 'she's against me' and stop trying to explain. And I didn't really understand it myself (I still don't, but my understanding of it has shifted into relatively greater clarity while I was thinking about other things).
So she was giving me advice, and I just started staring at the ground and thinking 'If I don't say anything, she'll stop talking eventually.' I was trying to block it out. But this time, rather than just shutting off any positive relationship with her like I tend to do whenever I have problems with someone, as soon as she finished talking I told her what had happened. And so she dropped the issue for awhile, and we got it to some degree of resolution. We talked instead about my self-injury, and I decided to try to stop hurting myself. (And except for one meltdown - described below - and a few very fast unthinking hits on my head, I haven't hurt myself since.)
Later that day, I had a meltdown where I was screaming at my parents to 'listen to me' and trying to explain how I felt while working around my rigid mental rules of psychological self-defense that trap me during meltdowns. As usual, the result wasn't making much sense, particularly because we were all upset. I kept telling them they didn't care about me because if they cared about me they'd listen to what I was saying and their replies - making it clear they didn't understand - were proof they weren't listening.
And suddenly I realized that I'm very triggered by not being understood. Since only 1 out of 100 people is autistic and there is extreme variation in autism, this is particularly unfortunate. But that's probably a big part of why this is a big issue for me - all my life, and especially in school, I've been misunderstood and misinterpreted. In school they used it as a form of emotional abuse, but even caring, well-meaning people who've known me all my life find it hard to understand how I think. And a big part of the problem is that the vocabulary for describing mental states has been designed by NTs for describing NT minds, and so every word is basically an analogy for what's going on in my mind, rather than The Word for it.
I think I'll try to become a researcher into autistic emotions when I'm older, if I can. Michelle Dawson's articles about autistic thought describe my mind much better than the other research into autistic cognition (most of which only makes sense to me if I try to imagine observing myself with no understanding of how I think). If I could do the same for autistic emotions, that would be a big help. And trauma in autism in particular. I just wish the research I'm planning to do had already been done, so I could benefit from it.

This is a list of institution-related links I want to print out later. I'm posting them here in case anyone wants to look at them.

http://csindy.com/csindy/2003-07-24/cover.html
About two different disabled children who died due to restraints in the same insztitution. One was Orlena Parker, a depressed 15 year old, and Casey Collier, a 17 year old autistic. Both of them were overweight and held facedown, which is especially risky for people in that weight range.

http://www.caica.org/NEWS%20DEATHS%20Casey1.htm
Another story about Casey Collier's death. Apparently he vomited while restrained, which might have contributed to his death (by reducing air flow). He was also asthmatic. As an asthmatic myself, I know that even just the terror of restraint can cause an asthma attack. Combined with being facedown with someone on top of you, breathing would be very poor.

http://www.isaccorp.org/devereux/devereux-colorado.03.13.03.html
More about Orlena Parker and Casey Collier.

http://www.ualberta.ca/~jpdasddc/abuse/ICAD/digests/restraints.html
A discussion in which people are outraged about restraint deaths, including Casey Collier's death.

http://ballastexistenz.autistics.org/?cat=47
Amanda Bagg's institution entries.

http://www.inclusiondaily.com/news/institutions/nj/bancroft.htm
Stuff about Matthew's Law, a proposed law limiting aversives which is named after an autistic 14 year old, Matthew Goodman, who was killed by restraints.

http://www.judgerc.org/
Judge Rotenberg Center's website. This is a center for people with "behavioral problems" which uses aversives, most well-known of which is electric shock treatments. Some people have died due to these aversives. Others have been traumatized.

http://normemma.com/lcorneli.htm
Information about Linda Cornelison's death. She was a 19 year old, developmentally delayed, nonverbal woman. After being starved for a long time, she started acting ill. She was repeatedly punished for these behaviors, meanwhile nothing was done about her illness. She died of a perforated stomach, thought to be related to starvation. She had extensive ulcxers, which probably caused the perforation.

http://www.nospank.net/jrc-1.htm
A list of links about Judge Rotenberg Center.

http://www.boston.com/news/local/articles/2006/05/22/a_question_of_tough_love_vs_torture/
About Antwone Nicholson, who was traumatised by JRC. Antwone, 17 years old, once said to his mother that she must not love him because she let them hurt him. His mother is now suing the state for sending him there.

http://edwatch.blogspot.com/2006_05_21_edwatch_archive.html
Someone's blog entry about Antwone Nicholson and JRC.

http://www.nospank.net/jrc-2.htm
Another article about JRC, with stuff about Antwone as well as others.

http://www.aspergersexpress.com/restraints_and_aversives.htm
The Asperger's Express opinion statement about restraints and aversives.

http://users.1st.net/cibra
CIBRA stands for Children Injured By Restraints and/or Aversives. It is an organization representing parents who are outraged at how their children were treated.

http://radio.weblogs.com/0119802/
A number of articles about institutional abuse along with comments.

http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjcxN2Y3dnFlZUVFeXkzJmZnYmVsN2Y3dnFlZUVFeXk2Mzc2OTg1
A description of an autistic boy, Nicholas Aquilino, age 13, who was severely traumatised by an institution. He will not leave his house and has been diagnosed with post traumatic stress disorder.

http://www.neurodiversity.com/restraints.html
Neurodiversity.com's list of links about restraints. At the top are links to other relevant link lists.

http://www.winonapost.com/archive/www/041303/1news.html
A story about Bailey Philipps, a 12 year old developmentally delayed, autistic girl who was physically abused in her school.

http://www.geocities.com/growingjoel/iamnot.html
Joel has a list of "I am not" statements such as "I am not an object." A number of them refer to attitudes which are prevalent in institutions.

http://www.prisonexp.org/
An account of the Standford Prison Experiment. In many cases institutions for disabled people are worse that prisons, because disabled people are more devalued.

http://www.feministpeacenetwork.org/survivors.htm
Women survivors of psychiatric abuse talk. Most of them were diagnosed as crazy.

http://www.cchr.org/index.cfm/5353
This is a page for reporting psychiatric abuse. It lists as one of the things "falsely diagnosed". So if you really do have the condition they diagnosed you with, is it not abuse?

http://www.mindfreedom.org/
Mind Freedom is an advocacy group for psychiatric survivors.

http://www.oikos.org/psychabuse.htm
Abuses in a Montreal institution.

http://www.astraeasweb.net/politics/badpsych.shtml
Astraea's page about psychiatric abuse.

If you can suggest more links, please do so.