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have you ever received substandard medical care due to your diagnosis of an autism spectrum disorder or other mental health condition?
never 33%  33%  [ 8 ]
once 8%  8%  [ 2 ]
rarely 4%  4%  [ 1 ]
frequently 29%  29%  [ 7 ]
often 21%  21%  [ 5 ]
always 4%  4%  [ 1 ]
Total votes : 24

echokynthei
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13 Sep 2008, 11:42 pm

i'm not sure if this is the right forum...but since i'm trying to raise awareness of this issue, trying to see how big the problem IS, and searching for a solution, maybe it's at least a place to start. in 2005, a friend of mine-NT, but with a diagnosis of depression and alcoholism-had an appendectomy. he went back to their ER several times over the course of three weeks with abdominal pain, only to be told they would not give him pain meds, to be evaluated for depression, to be asked when his next psych appointment was...he died of massive sepsis at the age of 29. this should not have happened. he was not listened to, because they made assumptions and missed the boat.

later that summer, my fatigue and confusion were diagnosed as depression. well, i probably was depressed-my friend had died for no reason. when i started not coming out from under anesthesia from shock treatments, they assumed (love the assumptions) that it was because i was a smoker. i kept telling them i didn't feel right. kept telling them, kept telling them i was dizzy, weak...they told me i was somatasizing. it took an alert (!) staff member who asked me if i'd been eating blue candy for them to realize...oops, my lips really shouldn't be that color. i had severe bilateral pneumonia, my oxygen saturation levels were below 80.

this june, i had a weekend of complex partial seizures. well, it started with a grand mal, and it happened in public so an ambulance was called. when i told them my meds, despite the fact that my blood pressure was through the roof, my oxygen saturation was low and my heart rhythm was off, they decided it was a mental problem and did nothing to treat me. when i had another seizure later that weekend and fell and cut my head open and was slurring my words and staggering, i went to the ER again...just chose another hospital. same reaction.

thus i was hesitant when i had chest pains a couple of weeks ago to call 911...luckily i had an attack of common sense. as it turns out i have coronary artery spasm angina, which can be deadly if untreated. that's the point. if i had allowed the repeated humiliation and frustration to prevent me from calling 911, i would not have sought treatment. and my friend DID seek treatment, repeatedly-and DID die.

how big is this problem? and what can be done? i've attached a poll to see if we can determine how big the problem is with at least the respondents here. it's a start.


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Last edited by echokynthei on 13 Sep 2008, 11:53 pm, edited 2 times in total.

echokynthei
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13 Sep 2008, 11:45 pm

i was supposed to attach a poll...evidently, i did not. let me try again. grrrr...


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violet_yoshi
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14 Sep 2008, 12:49 am

I get a lot of doctors who either presume I'm a kid, cause I look/dress younger than my age. Or treat me like a kid, because I express when I'm not comfortable with a procedure. Instead of listening to me, what I get is either "Oh it's no big deal" or "Stop acting like a baby". Usually they don't understand what "NO!" means until I'm in the middle of a full fledged panic attack, at which then they giggle and say something like "Oh I guess she bailed hahaha". Yeah, only bullies laugh at another person's obvious distress.

I have good doctors now, both of my doctors that are good happen to be Korean, so maybe that says something for Korean doctors in general. They tend to be less reactive and more mellow, although my main doctor did yell at me once cause I kept saying "ewww" when I found out I had Thrush. Come on though, Thrush is really gross to have, lol. It didn't help either that he compared it to a yeast infection.

I think a lot of doctors might be the type who want to be in authority, and don't like it when someone usurps that authority, or doesn't go along with the program. Of course, it also goes without saying that it's hard to find doctors these days who don't fall into the mindset of the Obesity Hysteria, and presume that all your health problems are due to fat, and refuse to treat you until you loose weight. I am not exaggerating, the prejudice is that extreme.

I think the worst problem I've had with are dentists, most of the ones I've seen seem to have no appreciation what-so ever for psychological issues. I have one now that uses a N2o on me, which works very well. One dentist I had was reccomended as someone who worked with Special Needs kids, he literally assaulted me trying to get me to sit in my seat cause I was screaming bloody murder when a cavity he was drilling into hurt very bad. I can only compare this guy to the dentist from the movie The Dentist. Seriously, he was that bad. Of course it's even more disgusting, cause he works on Special Needs kids, like some sort of sick sadist who gets off on seeing helpless people scream. My mom did report him to 1-800-Dentist and the ADA. So I believe now his dentisting days are over.

I very recently delt with a dentist who took out a tooth from an abcess, which as it would happen developed cause the dentist I met from above drilled too deep. Yeah, which I'm thinking is only cause he enjoys putting other people into pain. So I kept asking what was happening, he wouldn't tell me, I had a panic attack and felt like I was choking. The whole thing was terrible. I thought I was going to die, which unfortunetly, not a new thing to me with some of the dentists I've put up with. He was talking about how I kept asking about what was happening every two seconds, by this time I was hysterically crying and emotional. So I marched out there and said "Oh well sorry for being a noisey *explative*!" Then he yelled at me and said "THERE ARE CHILDREN HERE!" Yeah, I'm a horrible person for wanting to know about what's going on with my mouth, and I wasn't thinking about the poor children who would be subjected to the same behavior. Clearly if he cared so little about me, the last thing I wanted to think about was him torturing kids.

So yeah, I think all in all dentists are worse about treating people with Autism Spectrum Disorders than doctors. It's interesting how my psychiatrist needed to take a few years of medical education to be a psychiatrist. Yet when someone becomes a doctor or a dentist, they don't need to take a few years in psychology. I think they should.



echokynthei
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15 Sep 2008, 8:47 pm

Violet_Yoshi: hmmm...all i can suggest re: dentists is to negotiate before they ever start that they will tell you what they are doing every step of the way, and if they fail to do so, get up and walk out. or interrupt and remind them once, and then walk out? but they can't work with you asking to be kept informed in the moment, and you can't be worked ON unless you ARE kept informed in the moment. so some sort of negotiated settlement before the first "actual" appointment might be a good idea?

and yes, i've run into people who think all my problems are due to my being overweight. got an interesting double whammy once, when i was having trouble coming out from under anesthesia, that time i had bilateral pneumonia? one of the techs said if i'd lose weight i wouldn't have such trouble breathing-and wouldn't have such problems with depression either. my oh my, if we were all thin what a wonderful world it would be :lol:

seems our poll so far reveals that it's a problem...though we've got a woefully small sample size, so i may be speaking far too soon. time will perhaps tell the tale, as more people wander by...and as you do, if you're so inclined, tell your tale and offer any solutions that might occur to you? thanks. (in memory of joe, who should not be dead, damn it.)


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Orwell
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16 Sep 2008, 11:44 am

There's a pretty easy solution: don't tell them you're autistic.


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Alaras
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16 Sep 2008, 4:23 pm

I've actually had issues mostly with psychiatrists and psychologists. The psychiatrists I've had all disregarded my side effects and told me I'm not allowed to stop taking certain pills until the next appointment, EVEN IF I AM SUFFERING FROM LIFE-THREATENING SIDE-EFFECTS. Being a minor at the time, violating that could easily get me restrained under a PINS designation. Guess who flushed his Risperdal and Klonadine to avoid a seizure disorder! A psychologist I had refused to actually HELP me at all, instead focusing on getting me to obey my mother. I eventually refused to go to appointments and insisted on finding someone else. Wound up changing both my psychologist and psychiatrist after being caught in mid-suicide-attempt. As it stands, though, I haven't seen either kind of shrink in over two years, nor am I likely to find the free time to see one even if I find one who works for me.



echokynthei
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16 Sep 2008, 11:03 pm

Orwell wrote:
There's a pretty easy solution: don't tell them you're autistic.


that doesn't necessarily help when a) they ask about medications and they ask what they're for
b) i didn't necessarily mean because you TOLD them about your diagnosis-it could just as easily be due to communication breakdown due to the fact that we are what they are and they are what they are.

true, not all aspie/autistic folks take meds. many, however, do...and most of these are antidepressants or something similar, which even if you don't say the "A" word, exposes you to the same prejudice. basically, unless you can fake a perfect NT and take no psych meds...there is no easy solution.

and to the poster whose psychiatrist endangered their life by not listening when there were deadly interactions involved: believe me, that's part of what i'm talking about. psychiatrists and psychologists can be just as guilty (if not more so in some cases) of tuning us out and being contemptuous as any other medical or quasi-medical professional.


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16 Sep 2008, 11:29 pm

My issues were with a psychiatrist as he was one of those who saw people for a few minutes, just long enough to write a prescription. He once put me on Zyprexa when I made the mistake of mentioning my family history of bipolar disorder, when the only symptom I had was depression. It made so drowsy, I slept through a few college classes, so I told him I couldn't handle the side effects. Fortunately, he realized that I only had depression, and no manic symptoms. As a result of that experience, I'm extremely wary of psychiatrists and would rather find non-drug ways to handle the occasional anxiety attack.


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17 Sep 2008, 2:57 pm

Happens to me on occasion. one dr was so awful i had to report her to pt reltaions and compliance.

I had low blood counts and she said it was panic. Idiot woman.

I have done a lot of research in to good Dr's and it is not just us. It is all over the US.

I found good care, but it took a very long time. Don't give up. When you are treated like crap, make a complaint to pt relations.



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08 Oct 2008, 12:54 am

I stopped pretty much mentioning to most of them that I have AS... the minute I do they regard me like I'm full of crap.

Don't you think I would know my body better than anyone else would? If something's bothering me, it's already enough to gather the courage to say it. It's painful to then be shot down and continue to be miserable though. Some years, I switch doctors almost like I switch underwear.



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08 Oct 2008, 9:46 am

I have not recieved substandard medical care because of any psychological diagnosis though I have recieved substandard medical care when recieving free medical care. In the USA, the addage 'you get what you pay for' also extends to medical coverage. If the doctor misdiagnoses you, it's not their problem, and they will recieve more government funds if they misdiagnose you a few times. I have been misdiagnosed a few times by general medical practioners that I recieved free care from, as well as paid for.


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Sorenna
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08 Oct 2008, 11:22 am

I Agree- the poor get shafted.

It is even worse that they PREVENT you from working or marrying or participating in social mobility in any way.

It is eugenics. The only thing they didn't bargain for in their little eugenics laws is that no people can procreate without having to marry. So you take a poor person and say they can't work, marry, own property or any other facet of the American Dream. Well, they sure as sh*t can have kids. If that is all the poor are allowed to do, well, I hope they have a lot. And may we all pay for them. I don't mind.



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08 Oct 2008, 4:08 pm

Sorenna wrote:
It is even worse that they PREVENT you from working or marrying or participating in social mobility in any way.

It is eugenics. The only thing they didn't bargain for in their little eugenics laws is that no people can procreate without having to marry. So you take a poor person and say they can't work, marry, own property or any other facet of the American Dream. Well, they sure as sh*t can have kids. If that is all the poor are allowed to do, well, I hope they have a lot. And may we all pay for them. I don't mind.

What exactly are you talking about here? Who is prevented from working, marrying or owning property? I've never heard of any of these laws. :? And all the attempts at eugenics in the US were abandoned over 50 years ago.


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08 Oct 2008, 5:46 pm

I went to the doctor recently because I've been frequently overcome with stress and anxiety. I told her this, and she went "But isn't that part of Aspergers?" So what then, I have to deal with it?

She said she was going to refer me to the mental health team in the borough, even though I told her that previous to this I have had counselling for various ailments of the brain, and it NEVER worked. All I needed was something to calm me down. Instead she made me more erratic.

I don't get how I have to deal with stress and anxiety THAT I CANNOT CONTROL, when normal ppl get chucked drugs every single minute of the day (well, when the damn surgeries are open)

This was about a month or so ago.. still haven't received any word on this mental health team rubbish.

What a crock of s**t.


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Sorenna
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09 Oct 2008, 10:58 am

Orwell wrote:
Sorenna wrote:
It is even worse that they PREVENT you from working or marrying or participating in social mobility in any way.

It is eugenics. The only thing they didn't bargain for in their little eugenics laws is that no people can procreate without having to marry. So you take a poor person and say they can't work, marry, own property or any other facet of the American Dream. Well, they sure as sh*t can have kids. If that is all the poor are allowed to do, well, I hope they have a lot. And may we all pay for them. I don't mind.

What exactly are you talking about here? Who is prevented from working, marrying or owning property? I've never heard of any of these laws. :? And all the attempts at eugenics in the US were abandoned over 50 years ago.


In USA, if you are on Medicare you are not allowed to marry unless you want to lose your Medicare and benefits. You can marry anther person on dis, but not not someone who is not on Dis.

If you are on Medicaid, you can marry another poor person.

I feel in love with a Physical Therapist. No way he was poor or disabled. Could I marry him? NO. I would have had pre-existing conditions that would prevent me on his health care and my health care bills would be too much to pay out of pocket.

For years the US gov. has held me hostage for health care. I am not allowed to have any substantial money. I can't own property. I can't participate in the American Dream, nor can I save enough to prepare for the second half of life. As I age, I will be held to the mercy of fate.

On Medicaid, for instance, you are not allowed to have anything done to your teeth other than cleaning, fillings, and if they go bad, they have to be pulled. They do not do root canals nor implant.

If the car gets a flat, you are at the mercy of church or neighbors or someone else. If yo uare lucky enough to have a home that was willed to you (You can't buy one) and the roof goes bad- yo uhave to live witht he leaks because you were not allowed to save enough money to cover that expense.

They have put us totally at the mercy of others, and now with the economy tanking, who is going to help those who have had their livilhoods stripped by the govt for health care? Not many.

And why do we put up with it and why don't you know about it is my question? We are the last portion of hte population- the poor and disabled- who are segregated and prevented from marrying and owning property. I am suprised we can still vote.



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09 Oct 2008, 2:02 pm

Not because of my ASD yet, but because doctors did not take me seriously. I was at 2 doctors who totally ignored my knee problem and claimed that I was 'over-sensitive' and that 'nothing is wrong'.

Needless to say I have this messed up knee since December 2005.

It wouldn't be that much of a problem if I didn't want to do dancing professionally.


And of course I encountered that psychiatrist who questioned almost everything I said, claiming it 'can't be like you [Sora] said'.


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