Feeling worse after diagnosis.

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Sorry in advance for the long post

After 4 years trying to find answers I was finally diagnosed formally back in April with High Functioning Autism. When I first herd of AS/HFA 4 years ago I didn't think it was too bad, more of a difference than a disease. I knew a couple of people at University when I was doing my undergraduate degree who had AS- one was a very nice, quiet guy, the other was a nutcase, but had been abused severely as a kid (in an attempt to cure him of his AS his adoptive parents had used attachment therapy. The results were not pretty, he had severe PTSD and basically lived in his own fantasy world). When I went to see the Uni psychiatrist he told me I was a neurotic timewaster and that there was a lot of stigma associated with ASDs, so I shouldn't try to get myself labelled with one. I had problems throughout my PhD and was sent to 2 seperate psychiatrists. Both said I had no signs of autism and my GP said she thought I had some kind of personality disorder but wouldn't specify which one. I tried to find out which by researching them but none fitted my problems (my Mum agreed with this). I would have preferred a diagnosis of a personality disorder as most of them can be cured gived time, decent counselling and sufficient effort on the part of the afflicted. Eventually I gave up.

I had a very bad bout of depression last winter/spring. I was going through a period of intense stress and difficulty due to work related issues, and my best friend was killed in a road accident. I was referred to an ASD specialist who also interviewed my Mum and looked at a lot of material from my childhood too (artwork, stories, school reports etc). He said there was no doubt in his mind that I had HFA since I had speech and other developmental delays as a kid and still have some difficulties with executive function. I was referred to a local centre for people on the higher functioning end of the autistic spectrum. The biggest positive that has come from being diagnosed is that my Mum and Dad no longer get angry with me when I do things like forgetting my keys or forget to do things. This is actually quite a big positive.

The more time I spend around others on the spectrum and the more I read about it, however, the worse and more alienated I feel. I always knew I was different from others but I didn't realise how different. Since I was about 9-10 I have tried to be normal and I have become progressively more aware of and vigilant about my behaviours, to the point that if you asked me to "be myself" I literally could not do it. I wouldn't know what to do and would be too anxious and ashamed to do it. My attempts to appear normal are now automatic behaviours, every course of action is questioned automatically. I can't relax about it. I do screw up, especially when I'm stressed, and sometimes I manifest small involuntary hand and arm movements (I used to do things like swing my arms, rock on my feet etc but managed to stop these). These make me feel terrible. Seeing things I hate about myself manifest in others is horrible. That is not to say I hate the people at the centre, inasmuch as I've been able to get to know them they don't seem to be bad people, just autistic. I feel sorry for the ones that can't hide it, especially when they get bullied and/or stared at by passers by.

All my life I've thought and been told that if I just put more effort in I'd fit in, I'd be accepted, I wouldn't screw up with my personal life or organisational skills and things would get better. When I couldn't get by in the mainstream I tried and tried to find a niche in a sucession of subcultures. I have worked and worked hard all my life in every area of my life. Academically I have done very well and have been rewarded with good qualifications. I always thought that eventually I'd be socially proficient, have a long term partner, and in my younger days, a family (I no longer want kids, especially now I know what I've got) and that these things would just happen naturally, like they do for most people, so long as I worked at it. I am not a loner at heart even though I am in reality. I have now come to realise exactly how different I am from normal people and that it will never be possible for me to be normal no matter how hard I work. I don't know if I'll be able to make anything of my life. Whatever I do I'll just be trying to find something interesting to do while I wait to die. The things I really hoped for are all gone now. I would die sooner but don't want to go before my parents. I could never do that to them.

I don't really know what to do. I am just trying to get on with my work and focus on that, like I've always done. My friend dying was one of the worst things that has ever happened to me. Life without him is very lonely, he was very gentle and kind and I didn't feel as stressed in his company as I usually feel with people. I loved talking to him and loved it when he was happy. I have never met anyone else like him and miss him more than I can describe. I hate who I am and knowing this will never change, that I'll always be behind everyone else (unless a cure is found for adults). Academic skills can't make up for social defects. There is no place for me.

I'm sorry you're feeling down, I know how ugly depression can get. Not sure what you're thinking when you say 'make anything of your life', but one doesn't have to cure cancer to have a good life. Most people, even those who socialize with facility and grace, are doing well simply to 'find something interesting to do while they wait to die'. For most, that's an accomplishment in itself.

I was doing something quite interesting for many years, and that was put out of my reach by circumstance. Then I found something else interesting to do and I'm now being prevented from doing that due to discrimination against my disability and the lack of will on the part of any advocate to help me do something about it. Point being, you likely will find your place in the world given time, because no one has only one 'place' - though some of us do have a much shorter list of options than others.

One thing I have found in battling recurring bouts of chronic depression over the years is: wait long enough and things will change. Just when you think the blackness is eternal and there is no light at the end of the tunnel because its just a dead-end cave, things start to lighten and lo and behold you've been standing out in the fresh air and didn't even know it. Okay, that's a bit of a convoluted metaphor (or is it a simile?), but you get my drift.

I think the hyperawareness of every little Autistic trait you see in yourself is a common post-diagnostic reaction. I still do it quite a lot and I'm two years in. I find myself getting out of my truck in a parking lot and wondering if I look as gawky and uncoordinated as I feel just doing that, and before being DXd I never even considered such things. I notice when I find myself stimming in public, though I'm not always aware of when it starts, and I wonder if anyone thinks to themselves "Why is that old guy rocking on his toes like a little kid?" I must annoy strangers to death clicking my keys together in a hand flap. Oh, well - I've done it all my life without even thinking about it, why let it embarrass me now? I yam what I yam.

And I've been married more than once - the last one broke up as much due to eccentric behaviors on the part of my SO as anything I did - I've raised two kids that weren't even mine and one that was (who did not inherit my AS, BTW), so don't despair, your time will come, High Functioning Autism does not necessarily prevent one from having a fairly normal life. It might be tomorrow, it might be three and a half years from now. In the meantime find those 'interesting things to do' and don't burden yourself with thoughts of dying. There's probably somebody out there who really needs you as a friend. Most likely somebody with odd quirks that everybody else looks at askance.

Willard is 100% correct as always. He should be doing this professionally.

I was diagnosed only four months ago and since then, my AS traits multiplied by leaps and bounds. It is not that I have gotten worse; it is that I find fewer reasons to carry on with the NT disguise that I had to take on as I grew up in order to function in the world. It was THAT which caused me to become periodically depressed and suicidal. I found no escape from the continual stress of repressing stims, engaging in chitchat that made me want to run away, forcing myself to experience stimuli that was extremely uncomfortable and so on. I'm the little boy again that was lost a long time ago.... So these four months are the longest I have gone without being depressed in years.

I am sorry about the loss of your friend. I have one friend (and he is my only friend) who knows all about me and all about AS. He helps me understand people. Without him I would be lost.

Anyway, listen to Willard; he is a wise man. Try not to listen to me too often; I'm short-tempered and arrogant.

Last edited by dyingofpoetry on 28 Jul 2010, 6:18 am, edited 4 times in total.

It's understandable why you feel worse. In a few years, you might be more accepting about it. I started accepting my autism and diagnosis, a few years after my mum told me about it. I hope that you feel better about yourself, soon.

You're describing exactly how I feel. I was diagnosed (well, mostly diagnosed myself, as I've been repeatedly told that there is no formal diagnosis mechanism for autistic adults) towards the end of last year, and I too feel like it has deprived me of all hope. I don't want to live my life alone, but I have done and likely will do always. I watch people making friends and being social and wonder what it is that I do that marks me out as different. Over the years I've managed to control nearly everything - I almost never stim, and in my work environment I'm one of the crowd, joking and laughing with everyone else. But somewhere, something is different, and instead of getting better as I get older I think it's getting worse. Like you, I now see my behaviour as autistic - I've been seconded to a new department two weeks ago and my anxiety has gone off the scale, and I keep looking around wondering what it's like to enter a room full of unfamiliar people and not be terrified. Diagnosis has done nothing except build a wall between me and 'normal'. Sometimes I have goodish days, when I don't want to break down and cry, but they never last. Maybe tomorrow I'll feel temporarily more positive, but the day after it will all cave in on me again. Where do you go with this stuff? I know that normal people have friends with whom they can drink wine and talk and cry and feel listened to, but I don't know how to ask anyone for that. After all, when you don't have real friends it's a bit much to go up to someone and say 'will you be my friend so I can unload all my misery on you?'

So in the spirit of misery loves company, I'll admit that I too am clinging on to life by my fingernails - my family wouldn't care if I died, but they would have all my animals euthanased, and that, for now, is the only reason I get up and face each day. I have decided to give it another 12 years or so - by then the last of my animals will have died and I'll have no ties and no responsibilities. Putting a time limit on my life does, in a strange way, make me feel a bit calmer about all this.

Thanks for your replies, having re-read my riginal post I realise how whiney this all sounds. Thanks for putting up with it.

Willard, I'm sorry to hear you lost your job. That must have been a terrible blow and I hope you can find some way around the discrimination and your lack of advocacy. Thanks for taking the time to write such a long and supportive reply to my post.

What I meant when I said "make anything of my life" was to build a life that included a partner and a circle of friends as well as a decent job. I don't expect my career will amount to much of any significance even if it goes really well. I have just started out trying to become a scientist (nearing the end of a short postdoctoral post and looking for another one) and I'll be very happy if I just manage to stay in a field that interests me. Even if they don't have a job they really enjoy (or a job at all for that matter) most people are still irreplacable parts of things greater than themselves- their families and their circles of friends. If they don't have kids they can still be close to family members and help them with their children if they want to. Although I am close to my parents I'm not really close to anyone else in my family, not even my brother. He works abroad and has his own life. I have usually had one person at a time that I have been close to so I'm a peripheral member of my circle of friends and I doubt they'd really miss me for long. I find it hard to keep in contact with people even if I really like them.

I kind of know what you mean about the depression, I've had it on and off since I was about 3-4 years old. Unfortunately for me it's been more on than off, and my experience is more akin to stumbling along the dark tunnel and occasionally being able to look up through an opening in the ceiling. I'm glad to hear you have had some success in (albeit temporary) relationships. Personally I don't want kids for many reasons, not all Autism related. I would love some form of companion though, but don't really hold high hopes of meeting one. I don't find thoughts of dying burdensome. Like Tassie I find it a relief to know I don't have to stick around for the whole of my natural lifespan.

Dyingof poetry and Cockneyrebel, thanks very much for your input and I am very glad that you have both found a way to be happy with yourselves. I do accept my diagnosis, it is pretty obvious to me what I've got. I even find the study of the underlying neurobiological defects very interesting. Dropping the "disguise" however, is pretty much impossible, I think I am too far gone for that. I don't know if I would be happier if I could drop it, maybe I would. Its maintainance has been ingrained into me since early childhood and I have been trained/trained myself to the point where concious control has been lost. I could relate very well to experiences of the guy I knew who had been subjected to attachment therapy, although the behavioural interventions and dicipline used on me were far less extreme. I do not have PTSD or attempt to hide from reality as he did, but I do have stress induced nightmares/night terrors related to the interventions I was subject to when I was 3-5 years old. The thought of failing to control stims and stim like behaviours is uncomfortable. I don't know if I could force myself to do it and don't want to try. I would feel exceptionally anxious and self concious doing it intentionally even when alone, and would expect that most other people would either find my presence intolerable or see me as a potential play thing to bully and humiliate for fun. There are stimuli I avoid (uncomfortable clothes for example) but have learned to put up with most very well, and I have a decent library of scripted responses and conversation continuers so I can usually manage small talk (I still sometimes make bad mistakes, and I think people can sometimes spot the scripting if they spend a lot of time with me). I've always just seen these things as the price to be paid for some degree of social acceptance, and not paying has never been an option.

Tassie, I don't know where to go either, I talk to my Mum but there's only so much I can tell her since I don't want to make her unhappy. I've always felt like I'm living behind some sort of barrier-it's become more transparent over time but it's still there. Before I found out about AS/HFA I didn't feel like there was anything abnormal about me when I was on my own, just when I was trying to interact with others. I have made great progress over the years. I can now go to work and the people there are happy to interact with me and I am treated like a normal member of the team. I love this and wouldn't want to part with it for the world. I also think some aspects are getting worse as I get older though. I do not manage my work-life balance very effectively, have to make a real effort to keep my home habitable and and I am slipping further and further behind everyone else in regards to my social life. I'm coming into the age range when people settle down and establish the social networks that will support them for the rest of their lives yet I still cannot effectively build and maintain my own network. People who fail to maintain a network are marginalised later in life as people tend to stick with their mates and have no time for loners. All I can do is cling on like you are, probably for the next 15-20 years. Once my parents go I'll have nobody who'll be harmed too much by my departure. I've got methods etc thought out and the prospect of death is comforting. If you want to pursue a formal diagnosis I may be able to offer some good advice- try to find a local ASD support group or contact the National Autistic Society. They may know of someone near to you that you could go to or be referred to who specialises in or at least knows about ASDs.