Can we help this woman who needs advocacy somehow?!

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My friend, Rosie, needs help. She's been diagnosed with ASD 2 times, if I remember right, as an adult female. She has two autistic children. Well, she also has chronic health problems. She finally was getting testing done for Ehlers–Danlos syndrome, and yes, she does have the symptoms of it. According to her, the doctors are now kind of half assing the diagnosis because they claim "We don't even know if you really have Aspergers". It's because of something a doctor did before.

A while ago, she was seeing a doctor. Long story short, she got diagnosed with factitious disorder, especially because she knows a lot of medical terminology (it was one of her special interests) and the way she communicated. She tried to explain she is autistic, and thus communicates differently. Well, the doctor said no, you're not autistic, you have this. This woman, according to Rosie, is a poorly rated doctor on rating sites, and a lot of patients complain of being misdiagnosed.

This stayed on her record, and it preventing her from being believed with anything. Doctors are now even claiming she has Munchhausen syndrome by proxy, and is making her sons sick, when they have autism!

Here is her story:
http://www.youtube.com/watch?v=NsLnhbWRjrU

http://itisnotokaywithus.blogspot.ca/



The thing that concerns me the most is this: "Man, i thought i was being paranoid when i was sensing this, that this file was kept in private and not necessarily "seen by everyone"..to my horror, my instinct was right! dear god! Even with advocates in the room, the thing says i should not talk to counsellors because i "manipulate" one on one counsellors to my side."

Her file says she has factitious disorder and that she shouldn't be seen by counselors because she will manipulate them to "be on her side"? I have a feeling other autistic females have been diagnosed with this, and possibly parents of people who have children with disabilities. How can we help her fight this? She is now attempting to get that damaging report off of her records, but so far has failed! How can this one woman's diagnosis trump being diagnosed with ASD by two different people?! Why are OTHER doctors who know nothing about autism automatically assuming factitious disorder based on her public record, and not testing for autism again if they really question her?!

get her a good doctor. as a former doctor, I can tell you that it is the rule to take someone's word that they're sick until you prove they're not. "crazy people get sick, too." was the dictum. even if she actually had lots of psychosomatic complaints (which it sounds like she doesn't), her problems should be taken seriously.

also, I don't understand how her medical records are public. in the states, they're quite private. a new doc would know nothing of a patient's old records without that patient's permission.

I'm so glad you were a good doctor previously. As someone who wants to go to medical school in the future, I have no idea why more MDs aren't like this.

Rosie is poor, so she has to go through the public health system in Canada. From what I understand, the previous doctors were requesting records, and this came up. She may have accidentally signed a release form that allows them to access them. I know doctors in the states used to have me sign a lot of papers, and never expected me to read them.

Do you have any idea on how to navigate the Canadian public health system? She wanted to see private doctors, but they are too expensive for her.

In general, play this hand. Get a good doctor who will listen. Don't worry about trying to get this off her record, that's probably a losing, uphill battle. Just be upfront and matter-of-fact about this psychiatrist, "Yes, this previous psychiatrist diagnosed me with factitious disorder. She made her best judgment call, and that's her job, to make her best judgement call. But, I don't think it really explains all that much at all."

Like cathylynn says, finds a doctor who doesn't let a psychiatric diagnosis trump everything else, and who realizes psychiatrists have viewpoints all across the board, and that psychiatrists make misdiagnoses every day of the week.

And even though advocates don't always work, I think it puts the odds more in your favor. Kind of like if a senior citizen is not being taken seriously because he or she is a senior citizen, if their adult child who is 50 years old attends an appointment with them, just in a thoroughly low-key, respectful way, the doctor is likely to be quite a bit more professional, engaged, present, thorough, etc. Even though your friend Rosie is a mother, she appears rather young. If her advocate is a person who is solidly middle-aged like 45 or 50, that will probably help. Of course, it shouldn't be this way, but it probably is.

In addition, I've read that with chronic fatigue syndrome, it's tricky and difficult and unsatisfying to treat, and so doctors too quickly reach for a psychiatric 'explanation.' It could well be the same with fibromyalgia.

I wish you and your friend all the best. For her pain, maybe having prescribed medication availabe to take the edge off without causing too much cloudiness? And just having it available may be a big help even if you don't use it all that often. I'm thinking medicinal marijuana as a relatively gentle drug, but that can't be the only gentle drug.

As far as autism activism and advocacy. ASAN lists "The Autism Acceptance Project (TAAP)" for Canada.

http://autisticadvocacy.org/chapters/

PS I am a member of ASA but am not really active.

Could you talk to the advocate she's using? If they're cautioned against listening to her, they may be (more) inclined to hear you out.

thanks to everyone whose been so kind here as to help me. i am hurting right now because i heard some people on WP actually said they agreed that i'm a narcissist/liar or whatever. it hurts. attacked my my own community. not that you guys are doing it but if you see it, it's really harsh and not acceptable. i'm not usually on here because i don't have the time. thats all. time and spoons. especially after what happened to me, i harsh melted down and health (especially gut) a lot worse. actually i finally got a scope and although i don't know details, i know they found ulcers. go figure. anways, yeah really hurt to hear people on WP talking bad about me. I am autistic. it's brutal.

rosie, i can strongly relate to what you are feeling. i also having complex healf issues (OCD, taurretes, and more) and also many people in WP was bashing me for many reasons (mostly because of my righting style). rosie, you are doing alot of good efforts to help our community, you are one of the most impressive self advocates of autistic people and me and all of my friends from my school (all are proud self advocates) are fan of your videos and work. keep up the good work

I'm sorry to hear that. I hoped people on wrongplanet would be better than that, but for every forum you have people who are rude, passionate, and jump the gun. sometimes all three at once. I also recommend that you go to a better doctor and tell them what that one doctor did. If she was such a bad doctor, you could print a list of complaints against the doctor from other people to show why you believe you were misdiagnosed. Also, if you were diagnosed with ASD, there should be some sort of documentation. if you show that as proof it might help. I don't know how the Canadian health system works, but it's something to try.

While I can't diagnose or undiagnose Rosie that this is occurring is unfortunately is not a surprise to me in this era of post DSM 5 backlash against perceived over-diagnosis.

There are still many mental health professionals who do not think females or adults can be autistic or that only "severe" autism is "real" autism and the rest is excuse making or faking.

There is a large segment of the community that believes Autism (Aspergers in particular) is a trendy diagnoses and that there are a bunch of Aspie wannabes trying to be cool or just using the label to make excuses. Many are fearful that the real problems they are experiencing won't be recognized or believed due to the perceived overdiagnosis and stereotype of the socially awkward nerd aspie. This fear unfortunately has lead some members of the community to be suspicious of others.

I hope that the backlash ends and that Rosie' situation is resolved correctly. I do enjoy your videos