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4Five9
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14 May 2008, 6:25 am

Hi,

I'll try to keep this succinct as possible. For many years I struggled with social interactions and what seemed to be a lack of emotion. I'm incredibly introverted and hate attention in any way. From the age of 4 I've struggled with ever increasing depression and anxiety and have suffered total breakdowns. I was always an incredibly bright child, intense and had a brilliant agile mind. I was also a maths prodigy.

The first major breakdown after years of holding it off was at the age of 17. I went through a great deal of psychiatric treatments and my diagnosis ranged from Dysthemia to Paranoid Schizophrenia to eventually 'a personality disorder susceptible to mental illness'. I was put on a huge variety of medications and none of them had even the slightest effect on my problems other than sedating me.

Eventually I pretended to be better, stopped all medication and got on with my life as best as I could. Now at the age of 31 I felt it all getting to breaking point again and went to see my doctor. They asked if I'd heard of Asperger's Syndrome, which I had since I'm actually a secondary school teacher who has a lot of dealings with SEN kids. She basically went into details over the disease and I went into a state of shock for a couple of weeks. Finally it started to all make sense, all of the problems I've had throughout my life fell into place. A psychologist confirmed a lot of my problems are due to Asperger's but also looked at temporal lobe development inbalances stating that also might be a cause (underdeveloped left temporal lobe to a supercharged right side lobe).

I've been referred onto a first port of call psychiatric clinic due to the fact I haven't been able to take this very easily. Immediately they started talking in terms of schizophrenia again which made me quite mad, I can't take the continual changes in diagnosis. I explained how I feel it's Asperger's and gave assurances of my rationality, they've since backtracked and are helping me with social interactions (having me learn jokes and go to the public library).

I guess my questions are, has anyone else had a similar experience with being misdiagnosed schizophrenic?

Addendum: Don't laugh at my choice of being a teacher, it was done to try to force myself to get over my social deficiencies!



little-bird
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14 May 2008, 7:30 am

Well...as far as I know...the major difference between Aspergers' and Schizophrenia, is that people with Schizophrenia have delusions in which they can't tell the difference from reality. There are many similarities between them, so I guess it can be hard to make a certain diagnosis. To make matters more difficult, there are a whole lot of co-morbid disorders etc, and also our own individual differences - Asperger's isn't entirely the same for everyone that has it.

When I was diagnosed, I kept on asking my shrink was he sure (that I had Aspergers'), because interpretations of diagnostic criteria can be quite subjective. I still wasn't sure myself whether I had Aspergers' or Schizophrenia. I get a bit confused when people begin to talk about delusions, or hearing voices, or reality, - because what do they mean exactly?

p.s. Please don't call it a disease. (Or illness etc). It isn't.



4Five9
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14 May 2008, 7:47 am

little-bird wrote:

p.s. Please don't call it a disease. (Or illness etc). It isn't.


Sorry I've heard it described in those terms, I certainly didn't mean any offence.

I'm quite adamant it's not schizophrenia due to the rationality of my thought, I'm not delusional in the slightest, if anything I can be far too objective. I've never had sensations of a 'voice' telling me what to do nor that the world is out to get me.

The doctor I'm currently seeing apologised profusely to me after I got upset at his subtle implications that this was schizophrenia. In fact he apologised on behalf of his colleagues and the way they had treated me 10 years earlier. However he keeps coming back to the point that my depression is possibly chemically or biologically driven and keeps trying to expand on that.

I get the feeling that they won't actually listen to me and have (ill considered) preconcieved ideas about this rather than looking at my symptoms/actions which are quite blatantly autistic in nature.

I think what astounds me the most is the difference in opinion from psychologists to psychiatrists; psychologists aren't desperately trying to fit a square peg into a round hole.

I'm sorry if I'm coming across as bitter or angry about this, I'm not either. I'm just tired of being confused about the situation.



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14 May 2008, 9:29 am

It is a confusing situation to be in.

I guess the doctor you are seeing may just be trying to address the problem you went back to see him about. From what I gather you went back because things were reaching breaking point. Is this to do with depression that's getting out of hand, or that you're unable to function well in daily life etc which might be due to Aspergers? I think that there is a difference between the two. Your doctor may be trying to figure out, if you have depression, whether it is chemical etc, and can be treated with medication, or perhaps it isn't clinical? depression, and it may be that you are feeling stress/anxiety/sad because you want to be able to do things in your life that you are unable to do because of Aspergers traits.

For years I thought that I was clinically depressed, but now I think differently, and think that the times I do feel depressed are brought on by things in my life that cause me a lot of difficulty because of my Aspie traits. But essentially, if I take those things away, I feel okay, and happy with myself in general. Those things like having to work in a job that demands a lot of public interaction, having to socialise with people a lot, having to live with other people, feeling ostracised by family who keep on wanting me to do things - 'normal' things - that I don't want or have to do... They can really drag me right down until I feel like I don't want to be bothered with life... But I am basically happy with me, aside from those things, so I don't think the depression I get is what they call 'clinical depression'. The onset of my depression is more external to me, rather than internal in a chemical/biological sense. (I'm not certain of the exact use of the term 'clinical' depression, either. What I mean here is a severe, chem/bio depression, which you can't find any real cause for.) This is all just my experience, and opinion however, and I'm definitely not an expert.

Have you asked your doctor why he keeps on coming back to the point that your depression is possibly chemically or biologically driven? Ask him to clarify himself. Ask him why he seems to be leaning more towards this opinion rather than Aspergers. Remember that a lot of symptoms and traits commonly attributed to Asperger's syndrome are not exclusive. Everybody experiences a lot of these things in some degree whether they have Aspergers or not. It isn't easy to assess.

I also have felt tired of feeling confused about whether I was this or that. I wanted something concrete and final. When I was given a final assessment - a diagnosis of Aspergers syndrome, I felt all sorts of things - sad, shocked, relieved, upset, validated...and still unsure. So, I just kept on asking him why his opinion was thus. I told him the reasons why I still felt unsure, and asked him to address each. I asked him why he was certain I didn't just have other problems like schizophrenia, or clinical depression etc.



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14 May 2008, 11:38 am

I got misdiagnosed as bipolar when I was in college, so I sympathize. I just got that particular dx lifted last week. My psychiatrist was careful to not be too hasty in undoing the work of his peers, wanted lots of time and observation to be sure that something wasn't going to crop up as a comorbid condition. We spent a total of 2 years on that, in conjunction with a lot of other testing.

For 30 years I hid an annoying symptom that I have for fear that it would get me labeled as schizophrenic. I see things out of the corner of my eyes. Usually left side, like a spider crawling down a wall. If I look, it isn't there. I know they generally aren't there = not crazy. But I was terrified that if I admitted that I see things, I would get this unwanted label. (Complete aside, my mom smells popcorn as her random thing.) When I finally "fessed up" I was evaluated for temporal lobe epilepsy. The epileptologists said that my brain essentially has a dead spot (shows up on a PET scan) in one area and it has been trying to rewire around that area for years. When it does one of these random rewiring tests, I see bugs. To disrupt this, I take an anti-anxiety/anti-convulsant drug.

Funny thing about having my worst symptoms "disrupted" - I feel better generally. The bugs creeped me out. Grocery stores, crowds, and a whole bunch of other things overwhelmed me and made me more prone to a meltdown. By mitigating this a bit, I'm less stressed out in general. This means more quality sleep, better eating, not having to battle through the day quite as much and that has led to vastly reduced general depression.

So best of luck to you as you slog through the health system and try to figure out your own head. I hope that whatever you are able to learn is helpful.


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Fayed
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14 May 2008, 11:39 am

i forget who said it, but theres a quote about the relationship between Autism and Schizophrenia.

"Take away the Hallucinations and Delusions of Schizophrenia, and what you have left is autism."



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14 May 2008, 11:47 am

To answer your original question....yes. There are people here who have been DXed with just about every possible combination of Dx's before there was any knowledge of adults on the spectrum. One of my current concerns is for the adults who have been institutionalized and over-medicated most of their lives because there was no DX of AS before 1993. There still are to many professionals who have a poor understanding of how autism presents in adults. I fear the anti-psychotics and institutional life may make them a "lost generation" because anti-psychotics can be very harmful to aspies, (like giving a non diabetic insulin shots, it causes permanent damage if it doesn't out right kill them.)


I have had several stress/anxiety/depression induced "psychotic breaks", even though I am lucid 99% of the time. Not understanding myself and why people acted the way they do has often made me feel like I was going crazy. Trying to function in an environment that has no understanding and less sympathy for my neurology has often been over whelming. People responded to my emotional and sensory issues as if they were not real....so, is it any wonder that I would have difficulty believing in "their reality". Constantly trying my hardest to function and failing can make anyone "paranoid" because there appeared to be no logical/rational reason for my failures in socializing and employment. The catch is that we are intelligent people who do things that appear "stupid". NT's can only make sense of this by assuming that we are being selfish, lazy or crazy.

I went into psychology in college to try and understand all this and found some interesting ways to explain just about every AS trait I had....so, I don't doubt that other psych professionals would do the same. I have difficulty trusting most of them because I understand they are trying to define neurological traits in psychological terms . What I have come to believe, since learning about AS and being DXed, is that no AS behavior should be judged out-side the context of our neurology and our individual environments. I do believe that many of us have psychological issues, particularly anxiety and depression but they make sense in the "context" of being AS in an environment that is hostile to many of our traits. People are trying to communicate with me and not understanding that I am missing 80% of what they are saying...so they assume I am being rude for ignoring messages from them that my brain has never received. Communication is two ways...so they also make false assumptions about what I am or am not communicating by non verbals that I did not intend or do not know how to send correctly. It is far worse then living in a country that you are a foreign and don't speak the language because in our situation...they assume we can speak it and we are just refusing to....frustrating?

So is my depression innate and chemical or from being an undiagnosed and misunderstood aspie? I believe that it is both for me. I may not have been born with a chemical imbalance but living in an "alien" environment may have changed my chemical make-up. Constant abuse and misunderstandings from inability to communicate "correctly" and other AS traits that my parents tried very hard to punish out of me....causes feelings of anxiety, which releases adrenaline and furthers the anxiety loop. Eventually, this constant stres, (a sort of PTSD), and trying to do tasks that I was not neurologicaly designed to do...leads to release of other brain chemicals and "learning pathways" are developed. Some people respond to these stressers by increased stimming or melt-downs, which further alienate people from us and us from ourselves. Because I have no faith that humanity will ever be interested in learning about AS and accomidating my differences, I have chosen to deal with the anxiety and depression with chemicals. I have found that trying to function without them is impossible for me. I have to work to live and can not do that productly if I am unable to pull myself out of my obsessions and stop my meltdowns. Anti-depressants helps me do those two things and allows me to remain independent. Why I am depressed or anxious is mute at this point...I just know that I need to be able to function in their world. If I won the lotto(which is unlikely as I don't buy tickets), An didn't have to work. I don't believe I would need the anti-depressants. I could spend all my time engaged in my specail interests, avoid most socializing and would probably rarely leave the house.


If it is possible, I hope you can find professionals who are familiar with AS in adults and avoid the "others" whenever possible.
Given that they think teaching you jokes is going to mae you function better...seems to me a bit nieve. Many aspies do have a sense of humor, we just don't find a lot of NT jokes funny because they are based on lack of logic(we are literal...not "TO" literal because that is a relative not a scientific term) and human cruelty. People here write things that make me laugh all the time. We can and do use out own brand of humor but many NT's find it cyncical,sarcastic,silly or to dark, (for them). Try not to let them define "normal" for you because it is based on their neurology. Ours is not bad unless defined in the context of the world they have created for their own.


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15 May 2008, 3:22 am

I'm another. Slew of misdiagnosed and then finally i get the one that makes sense and my new doctor simply wouldnt believe it because I'm not severe.

Then whats wrong with me? I was told depression. I asked then why am I so depressed? Answer is because of AS.

I'm waiting to be assigned to a new doctor.

the not leaving your house if you could thing is overrated. I feel like I'm supposed to. And the happiest times in my life were social ones.

So I take the risk again, . . . .



4Five9
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15 May 2008, 8:11 am

First of all, many thanks for the replies, they've been really appreciated. I'm very taken aback by what has been said here.

I'm finding it difficult to express the frustration of being told I have Asperger's, only to have another person with decidedly different views attempt to change the diagnosis yet again. I wholeheartedly know I have Asperger's and am not schizophrenic; my mother and wife were very upset when they tried to bring schizophrenia back to the forefront of their thinking, they both are utterly assured of the accuracy and can understand the rationality behind the Asperger's diagnosis.

Strangely the person who was perceptive enough to see beyond the immediate symptoms of depression and anxiety was a locum doctor who took the place of my normal GP. My initial response to her when she told me was 'Can I go back to being myself now?'. I've spent years acting/attempting to be 'normal' and it has been exhausting. I've been physically and mentally drained for years trying to keep up the pretence. My colleagues at work were shocked when I talked to them and told them what was happening, they simply couldn't see it.

I've been working for the last few years at one of the toughest inner-city schools in the UK, specifically dealing with children with SEN problems and behavioural problems. I was always told I had a knack for empathising with them and being able to understand their needs directly. I've taught and supported children on the autistic spectrum yet never applied what I knew about them to my own personal situation. I simply assumed I was insane as that was what I had been conditioned into believing.

I fell apart when I was told it was Asperger's. I'd spent so long feeling doomed that I couldn't grasp at what this meant.

I was also told by people close to me after this that I have a tendency to misread them, which went against my belief of being able to empathise; I feel that everything I've pinned my threadbare personality on has lost all grounding. I'm feeling lost in all of this, despite so much making sense finally.

It's been commented to me by one doctor that I was 'the most complete Asperger's person they'd ever seen at my age'; they were shocked I'd lasted so long and in what seemed a reasonable state. I've never been able to explain fully what is wrong with me, I've discounted so much after believing it wasn't relevant.

I'm strong willed and will see this through. I just wish that they would stop going offtrack and looking for answers elsewhere when the majority of the problems can be explained by what you have written in your replies.

I also have a further question; they've asked me what help I want. I had previously asked to be able to cope with social situations etc. I'm not a practical person and this seemed like a practical request. The thing is I know exactly how to fake things in a social context but it exhausts me. Whenever I do this I feel I am a fraud and that there's nothing actually wrong with me. It's all very contradictory, this feeling of being a fraud was disputed by the doctor I'm seeing by having me do a HADS test. I was actually feeling calm and generally ok when I did the test but the results showed I was actually severely depressed and anxious.

For those of you who are in or have been in similar situations, what help would you recommend I ask for? I understand the difficulty of such a subjective question but I really don't have a clue where to start.

Sorry about the long post. :(



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15 May 2008, 1:39 pm

4five9


You live in the UK, so I am not sure what kind of services they even provide. When I got my DX, it was to get help with finding the right employment. I could not seem to find anything that did not leave me feeling like I was constantly holding my breath(anxiety) and on the verge of screaming or throwing myself under a bus. (You know the MMPI question..."do little things bother you"...well, that would be a big YES ). However, in the states, there is no help. If you have been working any kind of job then you have proven you can work and who wants to live on disability $ anyway. I have already spent the majority f my life beneath the poverty level....I would like to avoid returning there..no $ for my special interests :wink: They do have employment agency but it is designed to teach people how to fill out a job application and most of the job "leads" are for min wage or working at McDonald's. The social services have no idea what AS is or what kind of jobs would be appropriate. That s probably why statistics for employed As adults are so grim. If women make 80 cents to the same educated male...the AS individual actually makes about 30 cents to the same educated NT....those of us lucky enough to find work and not end up in our parents basements for the rest of their lives.


So the first thing to find out is...what services do they ffer and do any of them meet your needs. Thn you might want to make a list of your needs. You sound high functioning but it has obviously come at a cost...depression, anxiety and a sense of a loss of self. Break that down to what might be causing the most anxiety....what might be adding to the depression...how can you best return to your authentic self? There are many NT's who have the same symptoms you mention. What works for them may not work for you. They may ned to socialize more, you may need to socialize less or be able to spend more time reuniting with special interests that you have been surpresing to have the energy to just pay the bills. Ijust mention that because it is a big problem for me. I need a certain amount of "me" time to detox from social interaction, learning actually recharges my batteries and socializing drains them. Most of my anxiety comes from human interactions and never knowing when I am going to "get it wrong" and fear of having a sensory or social melt-down. I had to leave my last job because of this.

I would actually keep a journal of lists to help orginize the changes you might like to make in your life. I found it most helpful to simplify my life. I had to through out all the psychobabble I had been told over the years of counseling...being social appears to help NT depression but I need time alone and time to focus on my interests. What would work for you and can the services help you get there ?


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little-bird
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15 May 2008, 8:00 pm

4Five9 wrote:
I also have a further question; they've asked me what help I want. I had previously asked to be able to cope with social situations etc. I'm not a practical person and this seemed like a practical request. The thing is I know exactly how to fake things in a social context but it exhausts me. Whenever I do this I feel I am a fraud and that there's nothing actually wrong with me. It's all very contradictory, this feeling of being a fraud was disputed by the doctor I'm seeing by having me do a HADS test. I was actually feeling calm and generally ok when I did the test but the results showed I was actually severely depressed and anxious.


I felt like this too 4Five9 - when I first when to see a professional I feared that they would think me a fraud - because I've spent my entire life seeming to get by, and have been able to learn to pretend to appear normal. I mean really afraid - because in a sense what I felt was at stake here - was the 'real' me - I so needed the 'real' me to be acknowledged. But yeah, I've found myself in situations carrying on like a charming, schmoozing butterfly, even enjoying it now and then, and then feeling like a fraud. But it was rare, and more often I would be hiding in toilets, feeling like a robot, feeling like a cardboard face and incredibly tense and strung out, freaking out and leaving etc etc. Sometimes feeling so exhausted from smiling, pretending etc, and unable to move I'd just hide under my jacket until I could rearrange my face to normal again.
In the end, I was given medication in order to be able to function normally - I mean to be able to do things that I need and want to do to get by in life. Like Krex mentioned, I find that it's impossible for me to function without it. I however wish that I could have some sort of practical advice, or behavioural therapy or something. That would help. I think if you want help to be able to cope those are the options - medication, or some sort of behavioural counselling, or maybe even support groups.
Sorry for ranting on a bit. :roll:



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20 May 2008, 1:33 pm

This is my first post on this site. I was captured by the subject since I have a mother who is in a nursing home. She has been on so many different drugs during her life I no longer know her and haven't really had a mother in over 20 years. She has been diagnosed primarily over the years as paranoid schizophrenic and depressive. She has also been labeled as agorophobic. I find it ironic that now several of her grandkids are on the spectrum, one of which has classic Kanners autism. I am convinced I am either Aspie or HFA, depending on how you want to define me. I wonder what her true diagnosis should have been, but I know now that it is probably too late. Heavy medication over the years has altered her brain forever.
I can definitely feel your pain and wish you luck in figuring out your mind and what you need to achieve some sort of comfort level in your mind and body. I am working hard as well to find that inner peace. Good luck.



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20 May 2008, 9:14 pm

Back in the 1960s, under the DSM-I, aspies were diagnosed with "schizophrenia reaction, childhood type" (childhood schizophrenia). I was one of them. Autism and schizophrenia were not distinguished from one another until the DSM-III. Asperger's was not added until the DSM-IV.


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22 Jul 2008, 7:29 am

A couple posts back- You're confusing schizoid personality disorder and schizophrenia. They are different. There are three personality disorders with some similarities to schizophrenia- schizoid, schizotypal, and paranoid.

Autism is often mis-diagnosed as schizophrenia because schizphrenia has both negative and positive symptoms, and there are many sub-types of schizophrenia. It is the negative symptoms that are difficult to differentiate from autism.

Negative symptoms are primarily avolition, (a lack of any meaningful self-motivation), flat affect (litte expressed emotion), and complete social withdrawal. Schizophrenics can also become completely catatonic- which can manifest as either increased motor activity or decreased motor activity and posturing.

So, that's the reason why it's sometimes difficult for doctors to tell them apart, but it is very true that because autism is a developmental disorder a competent doctor shoud ask questions about social and language development as a child.



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24 Jul 2008, 12:38 am

I was misdiagnosed with schizophrenia when I was 12 and that same year when sent back they seemed confused and said "maybe it's early stages of bi-polar"

Later on was diagnosed with aspergers by both psychiatrist and psychologist although the psychiatrist just said autism and the psychologist said aspergers.



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26 Jul 2008, 3:45 am

I am quite amazed by people getting misdiagnosed with schizophrenia. I never paid any attention to this in context of Asperger.

My dad was paranoid schizophrenic and also had some sort of multiple personality disorder too. That resulted in a very scary child life. I developed amazing 'survival' strategies and just saw my dad as a (dangerous) strategy game.

I was put in a psychiatric ward for some time. This was early 80s.
I was scared being diagnosed with schyzophrenia but I haven't, after lots of tests I had in hospital. I mentioned the results of the tests in the getting to know each other bit. The results of the tests were generally/roughly: extremely stubborn, very ego centric, lacking social abilities (socially clumsy) and an IQ of 134.... I don't think I was really labelled with anything. I just always was/felt different than other people. For years I was scared to become schizophrenic. I avoided psychiatrist/psychologist/doctors because of my bad experience in hospital. I still don't like doctors. And I don't do drugs.

Not long ago my mum found out she is an Aspie. We never really talked about stuff till recently. I am in my late 30s now... and I am quite sure that I am an aspie too and seriously thinking of getting diagnosed, but with all this misdiagnosis I am not so sure anymore... It seems very bad and stressful to be misdiagnosed.

Is there any way to prevent taking the risk of getting misdiagnosed?