Diagnosed at 38? please help :-(

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Hello all. My life is a complete wreck, so I figured I would try and get some help understanding the condition I am suspected to have.

I have suffered with problems all of my life. I will try and briefly cover them but obviously at 38 years old it's very hard.

When I was a small child I had problems with being obsessive. I would rock on a rocking horse and if removed I would just scream the house down. I had terrible anger problems and used to become very frustrated. When I was 7 my father died, and this only made things worse. However, when assessed by a psychiatrist in hospital (I got hit by a car) they said that my anger and problems were down to my father dying. However, I realise now that I had problems long before that. The problems were -

Rocking. Either on a horse or in a rocking chair my dad made for me. Licking my lips until they cracked and bled to the point I could not even open them without them bleeding. When going to bed seeing strange images in my head. For example, two white lines that looked like an ECG readout. Unless they were smooth lines and not fluctuating I could not sleep.

When I was 13 I was assessed again, but by this time I had become very distant from the world and when I was taken to see a specialist I smashed a window in his office (threw his paper weight at it) and left. I refused to go back as I didn't want anyone to think there was anything wrong with me.

The rage and anger continued (I would smash down doors in the house and have tantrums lasting several days before exhaustion put a stop to it) and then when I was 14 I left school and never went back and began taking drugs trying to calm my rage.

When I was 20 I had an emotional breakdown and stopped using drugs, and for three years I never left the house, refusing to open the door to any of my friends. I got a little better in my mid 20s and managed to meet a woman in the USA. For the first time in my life I was able to hold down a job, but it wasn't easy and it got to the point where my boss (I worked selling and building computers) made me work in the end shop that had been empty before as we never saw eye to eye. However, he paid me little and I made him a lot of money, so I guess the trade off of letting me have my space worked out and that's why I was able to hold the job down for just over two years. Before that any jobs would either end in me being sacked for losing my temper and smashing/throwing things or me leaving as I could not deal with it.

I got married when I was 26 and moved to the USA, desperate to prove myself completely normal.

It failed. I was unable to hold down any jobs due to my anger and bad temper, and in the end my wife left me. However, during my marriage she offered me an ultimatum and I began seeing a psychiatrist wilfully when I was 27. This was the first time I accepted that the way I saw the world, thought of other people, spoke to and treated other people was not right or normal. I was obsessive, controlling and would become very angry at my wife literally screaming in her face. I never hit her, but I made a lousy husband. I was diagnosed then with Bipolar II and put on medication that would control my moods. It did not work.

In 2006 she finally had enough of me and left me suddenly when I shouted at her one day. From that day on I knew for sure I was seriously mentally ill. Every girl I met shortly after I would continually phone and pester, and all I have done all my life is spend hours rabbiting on trying to explain how I feel inside, when TBH I really have no idea.

In 2008 my life fell apart and I had a car accident. I had to come back to the UK. I immediately requested psychiatric help, and have since been diagnosed firstly with ADHD and given Ritalin, which sent me to a nervous breakdown. Then I was diagnosed by my second psychiatrist as having Bipolar disorder, and since then I have been diagnosed with autistic traits, bipolar disorder again and narcissistic personality disorders.

In truth I don't like people very much. I don't like change, and I have a terrible horrible temper. I can be obnoxious, rude and insulting, and eventually become very angry and enraged. Due to this I was signed out of work in 2008 and have just been sat at home ever since, refusing to go outside. The only time I leave my house now is when I am either with some one or if I am going to the psychiatrist and when I do go to the psychiatrist I will only go in a taxi, refusing to go out alone.

I have no friends. Those I did have could not cope with me being brutally honest with them. The problem is I have trouble trying to control what I say to people, so end up saying horrible inappropriate things. They are usually completely true, but I have noticed that "normal" people do not do what I do.

I figured the reason I was getting worse as I get older was because of bipolar disorder and "stress triggers" but tbh after taking every single medication under the sun for bipolar (depakote, risperidone, seroquel, lithium, lamictal and numerous anti depressants) my moods have not gotten any better at all and I have just become worse and worse.

It's so bad that I am now taking sleeping pills and at 38 have huge great liver spots under my eyes. The slightest thing sets me off, and I find myself unable to put anything stressful out of my head. I will obsess over it and then become angrier and angrier to the point that I was almost sectioned the last time the job centre sent me a letter.

At my last psychiatrist visit he said that due to my condition getting no better, and coupled with the fact that I refused to make eye contact to him, and continually talked too much that he was certain that I am really suffering with Asperger's Syndrome. He seems to think that this would explain my rage filled moods and mood swings, also noting that I will only wear black clothes and shoes.

Is it normal for people to be misdiagnosed for this long? or is it that I just haven't been getting the right care for my condition due to where I live (in a very remote and quiet area).

Now the job centre are trying to force me into work, which is making me very frightened and angry, as well as suicidal. My anxiety and depression have always been like this ever since I was a child.

I'm 31 and was diagnosed at age 30.

I'm a bit afraid too as I will be rejoining the job market. You might try some of the more natural approaches as it appears to help somewhat. I have a bit of a temper...too. You might try and get a job as a caretaker of a park, house, or etc. Mowing grass or etc.
Things that have helped me is avoiding gluten, dairy, taking B vitamins, sleeping 8 hrs, D vitamins, and probiotics.

There are no guarantees. Social skills classes and therapy have also helped. I'm not OCD. I have done alright on prozac.

Hi Kate thanks for the reply.

If I'm completely honest I can no longer handle doing anything. I have had to stop any hobbyist activity because I become obsessed and can't sleep, and that even includes things like DIY or general repairs.

What has made life harder is basically getting older. For example my sense of humour is incredibly childish, and if some one farts I will laugh for hours. That is acceptable when you are a child, and slightly acceptable when you are in your 20s, but not when you are 38.

At my last job in the USA I was sacked for telling them to eff off, and the one before that I kicked my manager through a set of shelves. I also do not like people touching me or playing around and I take things very seriously. My boss was throwing video boxes at me at the video store I worked at and I just went ape and beat the crap out of him

As I say, I am now worse than I have ever been. When put into a social situation I will either ramble on and make no sense at all or simply become angry and just hurl out insults. It's cost me everything I have tbh.

I am relieved that diagnosis can come late though, and I have a lot of evidence to help me get the care I need. Basically my last psychiatrist noted that she was becoming worried about me as I was not responding to the medication and was getting worse. I even refused to go to my own brother's wedding as I was frightened I would make a scene.

That's it you see. I just used to embarrass myself by either calling some one names or becoming excited and making a scene. Now that I know it *IS* me it has really pushed me more into wanting to be alone all the time to avoid the feelings of regret and embarrassment.

I find I can just about cope by locking myself away and not taking on any stress at all.

Ditto. I finally have a proper graduate job managing data in a university after temping for years after my PhD. I get employment support and adjustments at work-they are really supportive. I'm generally quite NT but get depressed and anxious a lot and struggle socially.

It sounds like you need specialist employment help from someone with experience of disabilities, or even better Aspergers.

To be fair you have gone through a lot of traumatic things e.g. accidents and anyone would struggle with that.

"due to my condition getting no better, and coupled with the fact that I refused to make eye contact to him, and continually talked too much that he was certain that I am really suffering with Asperger's Syndrome. He seems to think that this would explain my rage filled moods and mood swings, also noting that I will only wear black clothes and shoes."

If that's the whole basis for his diagnosis, I suggest you get a second opinion or ask your psychiatrist to refer you to someone who specialises in diagnosing ASDs
There are many reasons why someone might refuse to make eye contact or speak too much.
I'm not sure where the rage and mood swings are supposed to fit in with aspergers. Nor the preference for black clothes.

Last edited by bnky on 20 Mar 2012, 1:45 pm, edited 1 time in total.

He has four year's worth of files on me and spent months studying them before I even met him.

With the black clothes thing it simply comes down to me only wanting to ever wear black clothes. Everything I own is black. All one colour. He said that people with Autism do not like huge variations in things.

We also realised that my mood swings are not so much mood swings, but me becoming angry if I feel forced into doing something or changing. I am very habitual you see, and I only have one thing in my life at once. Whenever I create anything I will only use the colours black and white and sometimes gray. He says this is typical of some one with autism.

I did have some other questions. Is it normal for people with Aspergers to have trouble with facial expressions? All of the photographs of me as a child where I was asked to smile I would just distort my face.

Yes, that's just the thing. Whenever I was "looked at" I was going through a bad patch. The thing is now I know that those bad patches were mostly self inflicted. I was terribly clumsy as a child and constantly having accidents.

I just can't cope with the general things in life. Every time stress is brought into the equation I just mess everything up. I also have problems interacting with others. I take things out of context and then just go off on one ranting and raving. When I look back at it the next day however even I can see that it's just mindless rabble.

I was also diagnosed at 38 with an ASD, and was almost hit by a car at age 8, according to a school record, due to behavioral problems (disobedience, lack of impulse control). I'm also have a bad temper, yelled at my ex gf a lot. It's clear however that your problems seem to be more severe.

I have reluctantly but resolutely eliminated stress factors from my life, actually 3 of them (listening the radio at my workplace all day, commuting to my workplace on bicycle in the city, and one more). It seems that I can deal with the remaining ones much better. Before that, I had severe anger outbursts on the street on more than one occasions, and I'm happy to not have hit anyone or caused too much damage in property.

So I'd suggest try to look for stress factors other than people and try to eliminate them, if possible. Living like a hermit spares you a lot of trouble with environmental stress (sensory overload, even when you don't notice it), but you want to do something positive with your life, if I understand well, so you'll have to come out from your shell. As for people, a job like you did at computer building would minimize your contact with people, but you would need some more understanding of ASDs and people in general that you could learn from therapy, looking up information on ASDs on the Internet, reading books, or simply reading and participating in forums like WP. It's a slow process though, don't expect immediate rewards, may take a year or even longer.

Hey, Blackholesun! First of all, chill out--your life is not over, and life with AS can be good and fulfilling just like any other sort of life. I know it's overwhelming and new things suck and you'll probably have to re-think your idea of who you are in the light of this information you've just gotten that this is a known thing that other people have too--but you're still yourself, whatever name you give it. You're still YOU. AS isn't some extra thing; it's just a name for part of how you're built, which only gets a name because it happens to make things harder for you. The name lets you get some help, but it doesn't change the person you are.

You talk about your psychiatrist claiming you "refuse to make eye contact". This phrasing troubles me somewhat. For people on the Spectrum, not making eye contact is natural, and can be quite a positive thing. For me, it is easier to listen if I'm not looking: My brain doesn't multi-task very well. So I understand someone best when I'm not looking at them (or when I look at them, but unfocus my eyes so I don't have to process the visual information). That he says you "refuse" to make eye contact tells me that he doesn't understand this processing problem that so many of us face, as though not making eye contact were a matter of not wanting to communicate, when in fact it can be the exact opposite.

You've been in the psych system for a long time, and while I'm glad you have access to it (I appreciate my own counselors a good deal), that can leave some impressions on you. You get subtle messages that say, "The way I am is no good. I'm not acceptable. I have to 'get well' before I can have a 'normal life'". I think that with all this in your past, and all the treatment you've had to get for bipolar and such, you should really remember that mental illness, and developmental disabilities like autism, are part of the normal human experience--life with mental illness IS a "normal life"; or, if you prefer, there really is no such thing as a "normal life". I think that's important to remember because otherwise you start to think that you're all separate from the rest of humanity, that nobody understands and nobody has ever been through this before, when in reality, while we are all unique creatures with unique problems, we all do have problems, and mental illness and developmental disability are more common than not. (Really. More than half the population will experience them in their lifetimes.)

The feeling of distance, of subnormality, is something that you get from being a "patient" for a long time, and it can lead to feeling powerless--like you have to submit to the system, be a good little patient, swallow your pills and do what your therapist says. Well, sure, treatment is useful; but you can't just sit there and let them order you around, because that's not how you take control of your life. You take control of your life by understanding yourself and your problems and learning how to deal with them, and facing the world on your own terms--with psychologists and all of that stuff as resources you use, rather than people in authority who "know best" and do things "for your own good". If you're interested, check into the disability rights movement sometime; there are a lot of good points to be made.

Mood swings and wearing black clothes aren't associated with Asperger's. I honestly have no idea why your psychologist thinks that.

Also, people with AS do get better at dealing with the world. That your psychologist thinks that "your condition getting no better" is a sign of AS, is kind of odd. Sure, if you have AS you'll be autistic your whole life; but that doesn't mean you can't learn and grow and understand more and more things. We do not stay in stasis. Your psychologist is rather odd to think so.

I'm 43.. was diagnosed at 42. I'm glad it was late in life because I tackled things I wouldn't have if I thought it was impossible. I have the gift of growing up in a jacked up/abusive household - I say that because such a difficult childhood made me think very hard about things at an early age.
I burned through my rage at a young age - now I almost never get angry as a choice.
I was depressed and suicidal too but I turned myself around.
You can do the same if you want to; but it won't happen all at once.

For me it took turning that magnifying glass I used on the world on myself; trying to understand myself, and accepting myself but also accepting that I could change things about myself that I didn't like if I worked at it hard enough within reason. I consciously make an effort to embrace change when it has to come and more often am the driver of that change.
I turned the obsessive super focused Aspergian trait into an asset by choosing areas that were complementary to getting a good job that didn't involved dealing with people all day. I thought long and hard about it and went from warehouse worker to computer programmer to database administrator. I learned almost NONE of it in school.
If you choose your profession right and use your obsessive traits correctly you can work into niches that most people can't do it won't be full of anxiety.

I think you get angry about change because it is change you don't see coming and you're not prepared for it.
For me change isn't so traumatic when I initiated it, plan for it, and keep looking ahead for it.
Your post has a lot of negative self talk and a tone that says you have a fixed mindset about yourself currently.
You're depressed but there is a cure -> decide one thing you can do and start on it (it doesn't even have to be a big thing)... when you conquer that move on to the next thing... soon you'll look back and be amazed.

For example- I joined Toastmasters 8 years ago (http://reports.toastmasters.org/findaclub/) . I now look people in the eye automatically, I have vocal variety, and I even modulate my volume sometimes. Yes I'm still doing it all consciously but it's now part of my normal behavior when talking to people. I've had practice doing so and it's not so anxiety ridden anymore (though I still feel it I forge ahead anyway).
Yes it's normal for people to have trouble with facial expressions. You can gradually learn to get better at it.

I think you need to sit down and think about things and make some choices. Choose what kind of job you can do and would enjoy. Choose to let go of the anger and instead stand up to those anxiety feelings. I say YES every time I get that feeling and someone wants me to do something new BECAUSE I don't want such things to rule my life; I don't always do well but It does diminish my fear of such things.
I guess the short version of what I'm trying to say is this:
You're the driver in your life.
No one else cares about your problems as much as you do.
No one else can really solve them.
SO.. make the choice and pick something to start on.
Your depression will go away, your life will get on track, and you'll find your niche.
It all starts with deciding what you really want

I don't know if that helps at all...

Correct me if I am wrong, but I did not know that people with AS could get so physically aggessive with others? I have meltdowns, where I yell and holler, but I have never physically attacked anyone. I dont like to be touched, so it is only fair that I dont touch others or invade their personal space.

ScottyN - I don't know if it is a common trait but I put people in the hospital in grade school AND didn't remember that I did it. I can't imagine being like that as an adult... it terrifies me.
It comes on like a wave and once inside that rage I berzerk; I don't usually hurt people -by choice- but anything else is fair game. Which is why I make every effort to avoid getting angry now.... highly immature and not something I want to happen.

Farting is funny, its entirely normal to laugh for hours. Sex, bodies, farts, genitals - all really funny. Thats not an uncommon view, just find people who share it. Its good to laugh.

I hope you get to laugh more (comedy, company, cartoons), spend some time exercising and making endorphins, eat good food, find one or two good friends and a new lover, have lots of countryside, enjoy good books and films, eat chocolate and drink beer.

You have a precious life and you are younger than you think.
Good luck.

People are people. People with AS can be aggressive and they can lie.

I'm afraid I don't have the energy right now to read your post in full, or write a full response. I just wanted to let you know I was also diagnosed at age 38. And my life is also a mess - looks good from the outside (marriage, job, house) but in reality it's a mess.

I think your psychiatrist has read this and interpreted it in a very narrow and literal fashion. Possibly as literally as an Aspie is "supposed" to interpret things. 

Hmmm... Not true. I paint with a much wider pallette. So too did Lucian Freud.

Haha! I suspect so. I was always the one being told off for spoiling the photo by "pulling a silly face". I just didn't know how to construct a faux smile on demand :-}

Have a good read of Callista's post.

You sound like you've been through a lot, but there are some pretty unusual features here. Most aspies improve rather than degrade with age, even if it's only in a handful of areas.

There is no cure or medication for aspergers, apart from some people benefitting from anti-depressants/anxiety medications and sometimes ADHD medicines such as ritalin. As you seem to have exhausted these options without improvement, you are not going to find a quick fix.

Assuming the diagnosis is correct, your improvements can only come through self acceptance and learning, with some help from a therapist or counsellor.

Good luck with your self discovery.

Jason