Aspies For Freedom

Thought I would share my story... maybe it could be of use to others.
This year has been pretty crappy for me. I was homeless for quite a while because I moved in with a guy that I thought cared about me and he turned out to be really abusive (physical and "emotional"- he would say I looked like a *** and embarrassed him in front of his friends etc.) and I left. Someone I knew let me sleep on their floor for a while. I happened to be fairly depressed because of that and couldn't keep a job. Add to that being violently raped, and having all of my stuff stolen by someone I knew that started doing drugs. Anyway, really crappy string of events and I had several reasons to be severely depressed and couldn't handle all that happening at once and became suicidal. I ended up being committed to the psychiatric ward.

They did a brief intake interview, but I was feeling so bad I barely said anything. I didn't feel like talking to my psychiatrist and didn't say much I the first couple of weeks. I just sat there and looked at the floor (eye contact irritates me A LOT, its hard for me to think properly when I'm looking at someones face).
The psychiatrist and my nurse brought that up and asked me to look at their eyes, and I said that eye contact was difficult for me and its easier to answer questions when I'm looking at the floor. They were just like "that doesnt make any sense."
(I hadn't been assessed by a psychiatrist for Asperger's before, but a few people in my life such as a school counselor and my mother who worked with AS kids in the school system were convinced that I had AS. I have read extensively on the subject and know I have AS.)

I decided to mention that I thought I had AS and they both laughed at me and said that was ridiculous. I asked them why and the doctor said he already did an initial assessment (when I was full of drugs they made me take and I barely said anything because the drugs made me feel like a zombie) and I didn't have ANY of the criteria. (This made absolutely no sense, because I was making no eye contact and have repetitive movements, and they didn't ask much about my past to find out). I said that I would like to discuss that further and that I could provide a written list of my behaviors that match the criteria. The psychiatrist was like "don't try to argue this, I've seen those people and you don't look like one." (WHAT??) I was upset by this point and crying while trying to explain my past history of no friends in school, being fired from jobs because bad social skills, etc. And his comeback was "Well, you've had some university education. People with Asperger's rarely go to University."
I told him that didn't make any sense, and wasn't true, and he said "stop trying to make yourself fit into something that you're not", I was still trying to argue and he got up, laughed again, and said "forget about Asperger's!"
Meanwhile, i am still upset and pissed off, and my nurse was still talking to me. I was explaining how I had severe social problems and other symptoms since I was very small, and he said "well you were probably depressed when you were a child." I tried to explain that I wasn't, because I can remember having lots of fun spending time by myself reading and exploring outside and was fairly content, certainly wasn't depressed, and then he said "well you probably don't remember." I then said I'd take a piece of paper and write down my behaviors and how they relate to AS, and he said "Just drop it, you don't have Asperger's! Do you want to know how I know? You just said you had a happy childhood. People with Asperger's can't comment on their emotions."  I said that it wasn't true and just a stereotype and he told me "this conversation is going nowhere, i'm not going to tell you again, you don't have AS", and left.

The reason why I was arguing it wasn't so they would just label me "AS", but they were both trying to get me to socialize with the other patients and watch TV and stuff when all I wanted to do was sit in bed and read. I told them I normally didnt socialize or watch tv much and they said I had to start doing it.

I spent the day writing a long letter explaining AS and my past behaviors and the reasons why I have a lot of trouble communicating in the present.
I handed it to my psychiatrist at our next meeting and he took it but didn't comment on anything. He was basically saying to me that I had lifelong depression and a personality disorder (schizotypal PD).

I ended up phoning my mother and explaining what he said to me. She ended up speaking to him and explained AS and how my behaviours were AS. After a couple phone calls, he apologized and said "I didn't realize AS was like that, I haven't read anything on it besides the DSM-IV. I'm not experienced in that area."

Well they sent me to a psychologist in the hospital, and I had to fill out a questionaire for general mental health and the excercise that is formatted like "Men compared to women are_________" and you have to fill it in..
When her report came back a week later, it said that I didn't have any personality issues and that I was very depressed. She said I could have AS but she wasnt sure she didnt know a lot about it. So that was basically a useless assessment.

Anyway... even though my mother explained to them that I don't really socialize with people unless they are talking about something i'm interested in and such, they kept bothering me about not socializing and not going outside on passes. While feeling horrible I dont like going out into the city because I have sensory issues and it is really exhausting for me and not enjoyable. Id only go out for an hour at a time or so. They kept pushing me to interact with the other patients and to go out all day though, and kept telling me that it would help me "improve". I tried to explain that forcing me to socialize with people I didnt know was really stressful but it didnt seem to make any difference.  I was in there for 2.5 months.

Now i'm living in a group home type place with staff... I really hated the idea of living with staff but I ended up thinking better of it because they make sure I eat properly and go to appointments and such which I have trouble with. I have a new psychiatrist and I was supposed to get a referral to be properly assessed for AS but she hasn't mentioned it and I doubt they'll bother doing it. It's difficult to explain my thought processes though... until recently I thought everyone thought thought visually like I do, talking in your head seems weird. When i try to explain whats going on in my head with visual associations I sound more psychotic than I am.

So, there's an example of a bad situation where someone happens to get a psychiatrist, nurse, and psychologist don't know anything beyond the bare stereotypes of autism. I don't understand how you can be in a mental health profession and be so blatantly ignorant!
If someone else is going through something similar, well, you're not alone! Just wait it out, and remember that the truth is on your side, and that you'll find someone competent who will listen eventually. (i'm still looking.)

May things look up in the future.  Most people I know had at least one really tough year.  Bureaucracy just does not mix well with any type of "care."  I am so glad that you had some one outside of the system to advocate for you.

Hello mysticaria,
I'm very sorry to read of these horrible experiences that you have had in the past &  with this psychiatric hospital.
I'm afraid that this sort of scenario is all to common, yes there are ignorant and unprofessional people in the mental health service & apart from the harm that they do, they give the good ones a bad name.
I really feel very sorry for any inpatients subjected to this kind of treatment & wish that I was in a position to change things.
It is good that you are now being helped & hopefully if you want it, you can obtain a diagnosis from someone who does know what they are doing.
All the best.

hi mysticaria, thanks lots for writing this. You have so much courage, holding with the truth against all this ignorance and criminal carelessness. I'm writing to acknowledge your bravery and strength, and your love for yourself, and to say how proud you make me feel. Thank you.

I'm also writing because you strike a chord right now. I'm not in a vulnerable situation like you describe. But in a few weeks I'm going for a formal AS assessment and it matters to me that my AS should be recognised. Part of me is fearful of the same kinds of ignorant resistance: "You don't show the stereotypes of behaviour that I adopted from my inadequate medical training, so I'll ignore your 60 years of experience and insight and your high intelligence and analytical ability and integrity, and I'll toss off a half-arsed diagnosis because I won't have my 'expertise' challenged." And another part of me has the courage and insight like you, to hold firm, and say that what I experience is an Asperger experience through and through, and demand recognition.

Fingers crossed, I won't have to dig in and fight for the diagnosis. But I'm ready. We must have the truth, we deserve recognition.

Keep looking, mysticaria. It will arrive. Meanwhile, lots of love.

Just another piece of everyday Asperger heroism! Shine on, bright star!

/michael

Good for you & keep at it, if you get no joy from one lot.....try again with a different  place....All the best.

Thanks! for the good comments.
I was lucky that my mom knew quite a bit about AS and could lecture the doctor. And also i'm stubborn when I know i'm right and don't give up easily. But I have a really hard time understanding how people can be so arrogantly stubborn about something they DON'T know. I really don't get it. I don't ever pretend to know something I don't to stroke my ego. I tried several times to discuss his views of AS, and how I do not meet the criteria, you know... in a RATIONAL manner. I was like "Okay, you do not believe I fit this diagnosis. Can you go over the diagnostic criteria with me and share your evaluation? You don't know anything about my childhood, which is fairly important for the assesment."  but he kept avoiding my questions or just out right refused to discuss it any further. It's fairly annoying when you have to talk to someone who thinks you are a negative personality disordered mental wreck almost every day for a couple months.
Yes, at least he apologized...after a month and a half or so.

I actually did apply for disability and was denied a couple weeks ago. Right now i'm still on the basic social assistance. Even though my doctor wrote how I was severely depressed and it effected my cognitive abilities, I have bad side effects from meds (such as where my legs got so shaky I couldnt walk down the stairs and my legs were spasming badly and I couldnt stop the jerking movements which hurt), sleep 15 hours still exhausted, terrible memory, psychosis symptoms etc. and possible AS listed too.

The government (canadia) claimed "you do not have a severe mental impairment." But I had basically all the symptoms of severe depression covered. They totally twisted the doctors words around- he wrote in the report that I had improved enough "TO BE RELEASED FROM THE HOSPITAL"- obviously because I wasn't in the hospital anymore- but they turned that around claiming the psychiatrist said I IMPROVED and wasn't in need of help anymore.

The second part of the report said "you have also been denied because you don't require any assistance in your daily living".  
Umm... And my report clearly stated that I'm not living independently, that I'm in a supportive housing situation for young people with mental health difficulties with staff that monitor me and help me out with daily living tasks!

It's as if they didn't even read the report. They actually wrote that my cognitive problems were MINIMAL and the primary issue was LACK OF MOTIVATION. #$&%! Implying that I don't really have any problems, I must just be "lazy" and don't feel like doing stuff.

They should have just said "well even though you have all this evidence for mental disability and your doctor agrees that you need to recover and you are receiving day to day help, we believe that you are just a no good bum trying to take advantage of the system and if you just got off your lazy *** and did things for yourself you could get a job and be a good tax contributing citizen."

Theres no way I could work full time right now... Im also a full time student taking online classes...
I havent lasted more than three months at a job before being fired due to my terrible people relating skills and multi-tasking uselessness... being on social assistance really sucks but im afraid if I tried to get a part time job it would be too much for me and id get fired and be homeless and hungry again because it takes a month at least to reapply for social assistance. I was really hoping to get on disability because then I could find a part time job and if I happened to get fired it wouldnt be a huge stress because I would have money to fall back on. I'm certainly NOT a lazy bum, I'm trying to finish my degree and spend my free time working on my primatology websites and reading/learning for my own interest. Depression really fucks with the brain though, its much more than "feeling crappy", that is only one part- the way the mind operates is widely affected. I'm someone that used to have an excellent memory, could memorize whole textbooks and get 100% in all tests, had 94% average my first year of university - NOW I read a book and two weeks later can barely remember anything- I am constantly absent minded and forget appointments and simple things I need to do. It literally feels like ive lost my mind. I found it very insulting that the provincial government considers me a lazy whining person with no impairments.

I appealed and  got another supporting letter from another psychiatrist to attest that I have severe symptoms and need support, but who knows if this person will actually read the application. Fudge, I loathe bureaucracy!
Maybe i'll apply for a job with the employment assistance branch, I could randomly not read peoples applications too.
Okay, there is my ranting session of the day. I don't mind sharing stuff about this because if you just get down on yourself and keep quiet other people aren't informed of what actually goes on in these symptoms.

So few people are courageous enough to stand up for bureaucracy. This is why we all admire you, Lucie.

You are quite right Ian.
The NHS bureaucracy is overhauled regularly in the UK, resulting in a progressively larger number of incompetent managers.

Many of the said managers, line their pockets at public expense, lie to any and all who get in their way or who dare to complain.

The very last of their concerns is 'patient care'...'turn over'  just as in a business is the most important thing to them.

Many hospitals here are not interested in allowing their staff opportunities to study further and due to requesting vast amounts of overtime from these staff, they seldom have the energy to pursue such in their virtually non existent free time.

Social Services are equally tarred.

LOL, I was joking about "standing up for bureaucracy." I was just surprised anyone would take the side of the bureaucrats. It's very clear that the more layers of bureaucracy between a client and medical care, the more the care is compromised. It's true for hospitals, for schools, for agencies of all sorts.

In America the deadly (literally) bureaucracies that render out health and mental care so twelfth-rate are the insurance and pharmaceutical industries.  I see how the massive "No Child Left Behind" mess has been so terrible for the schools.

If solutions were easy then I suppose we'd already be there. I am not without understanding for seemingly indifferent workers in hospitals and such.  If they became personally involved with every case that came in they would probably lose their minds. Why would some one be any less a person just because they are in a service industry?  A compassionate person, and that is exactly the type of person drawn to service and care professions, would have to find a way to distance themselves from their clients or become a total emotional wreck. And yet, seeing each client as an individual and being sensitive to their specific needs is critical to good care. No easy answers.

I don't see how else you can improve systems - accept through better ways of managing. We should always strive to look for ways to improve care - each client should be viewed as an individual and the care they receive should be specific to their needs. I'm talking ideals - I may seem naive - but I believe the answer lies in improvement management systems and structures. Bureaucracy. Maybe bureaucracy isn't the right word -  since often bureaucracy involves hierarchies, maybe a misunderstanding of the term on my part, I was thinking more of callaborative management.

Ah, NOW we agree. (no sarcasm.)

The problem with bureaucracies is that they always seem to see the answer as adding more bureaucrats, more layers of nonsense, more cost cutting of services to allow more $$$ going to the bureaucratic structure.

Actually "improving management systems and structures" is usually seen as a threat to bureaucrats. Typically their first reaction is "Wait! We have to protect our phony-baloney jobs!"

Been through it and just about came out at the other end in one piece though very depressed and empty, I did not get as far as being hospitalised as they have a team that treats you in your own home in my area to deal with crisis.  The comments you were told were not to different to me, the one about education rings a bell I was told I would not have been able to obtain a history degree ( so hands up how many here have degrees????). I did bear with it, with lots of fighting (pretty much lost my job and most of my friends/social network in doing so).  Now I am formally diagnosed HFA and see an audiologist for hyperacusis who is really nice and currently have a therapist who admits she is no expert but is willing to learn (for CBT) and see a nuerologist.  Now I am just having trouble getting back to work and there a questionmark about my comorbid's bipolar or not bipolar that seems to be the question but hell the mids help but I still have cycles of mild hypomania and moderate depression.

I can identify with this & totally agree.