Lost Generation?

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Does anyone else feel they broadly meet the criteria for being one of the 'Lost Generation' of Aspies, as described below?

To qualify:

- You must have been born in 1980 or earlier
- You must not have been diagnosed until well into adulthood
- Aspergers must have had a MAJOR negative effect on your life

http://www.iancommunity.org/cs/articles ... r_syndrome

If you do think you're part of this generation could you tell me:

1 - When were you born, and how old were you when you were diagnosed?
2 - How did Aspergers affect you before you were diagnosed?
3 - Most importantly, how are you post-diagnosis? Has your condition improved, and how are you dealing with what happened to you?

I'm really interested to hear about the experience of others in this situation. My answers would be:

1 - 1966, 40
2 - My biggest problem was severe emotional immaturity. This affected pretty much every aspect of my life - career, independence, relationships, etc.
3 - My condition has improved dramatically in recent years. However, my biggest problem is coming to terms with the lost years. Even though my life is much, much, better now it's hard not to think 'why me?' sometimes.

Okay

1. 1979, self diagnosed at age 30.
2. Failed school, followed be a lack of employment, or unstable employment in jobs beneath my ability, no girlfriends, no friends, infinite problems with family, communication, socialization yada yada
3. Things are better. I understand myself so I can modify my ways for a better life. It's still no picnic, but much better.

Hi,

by accident, I just also posted a message with a very similar topic, hehe

yes i am also depressed about that, *if* i only knew it earlier, then my life would have been soo much better, i wouldn't have missed chances for such a beautiful happy life...... (

anton

1. Born 1980, diagnosed age 27.

2. Got to university but couldn't cope with independent living and the heavy social demands. Turned to drink and drugs. Kept dropping in and out over a five year period and left without a degree. Longest I've held down a job is 9 months.

3. Was elated when I found out but soon became frustrated at the lack of services or advice or any available positive step. Found myself incredibly angry at not being told earlier - I felt I'd been subjected to a lot of needless pain. I'm over that now, but am still unemployed with no obvious route back into work or any help toward that end. I'm finishing my degree though.
The diagnosis has been very good for my self-esteem and I'm a lot more self aware, though it hasn't made any difference to the symptoms. Walking into a crowded room is still traumatic for example.

I'd say I fit that, yes.

1. 1976, 34
2. I have great difficulty with verbal communication, despite several attempts to "overcome my shyness", because I'm not actually shy. Because of this, I don't talk much at all. I've lost every friend I've managed to make, save one, and I've never been able to get a job via the normal interview process. It hurts my pride to admit it, but I'm also pretty dependent. I've never not had someone living with me who didn't take care of me, so to speak.
3. I was only diagnosed a couple months ago, but now that I understand what's going on, I'm attempting to eliminate things in my life which cause overload and anxiety, including allowing myself to just be instead of fretting over how I'm supposed to be. We'll see how it goes...

1. 1969, 41 (self-diagnosed, but I am currently seeing a therapist about this and other matters)

2. This is mixed up with ADHD and resulting comorbids (depression, anxiety, panic disorder) as well as PTSD, but: Very poor school performance. Dropped out of college three times despite starting with excellent grades in my first (and once, second) terms. I've had several jobs in my adult life, but none for longer than six months, and only two in the past 20 years. My attempts at independent living (well, living with roommates) failed every time because for whatever reason (let's call it executive dysfunction) I couldn't hold things together for longer than a few months at most, and sometimes only weeks, would sometimes overstep boundaries, and just trip over unstated social expectations. Socially I did better in the late 90s, but this socialization was in a narrow context that coincided precisely with one of my special interests. I still had significant trouble everywhere else in my life.

I should also mention I have never been able to get a job through the normal interview process except in fast food as a teenager - and then, only McDonald's. The three jobs I had since then I managed to get through other means.

3. I feel better about myself. My condition has actually become more obvious (I have been guarding against it and hiding it without really being fully aware of it, and now that I know, I am not really as concerned as I was), but I am okay with that. Nothing else has changed so far, but it's only been a bit over a month.

When ADHD came up, I actually abandoned a lot of my regrets. I carried so many with me everywhere that often all I could think about was the past and the parts I wished I could change. Once I realized my problems were exacerbated by neurology, I felt I could let go. This overall improved my life, as the primary motivating force for my depression was significantly lessened. I'd already done a lot of processing over this when AS came up again (I first thought I might have this years ago, and was convinced a couple of years ago but then had a lot of denial until now - I do regret not doing anything then), but ADHD didn't explain everything by a longshot, even though I expected it to. AS fills in the rather large gaps (if it had been the other way around, ADHD would have filled in rather small gaps).

I don't know that I'll get much support or that I'll even be able to get a diagnosis or be taken seriously. I have been realizing just how far from independence and self-sufficiency I am over the past year, and it's been more than a bit of a wakeup call. I am currently in the process of applying for SSI and right now I do not know what the future will bring.

Great, I don't count cause I was born in 1982. Just another category I'm borderline on the outside of.

Speaking of which, has anyone here read the web site crazy meds? The guy that runs it was diagnosed as HFA Autistic in the 60's, so you may not be as lost as you think you are.

To be honest I had a lot of things fly under the radar in my childhood because my father was pretty much opposed to me seeing a psychiatrist for anything, hence no ADHD diagnosis, no other diagnosis.

1 - When were you born, and how old were you when you were diagnosed?

1958. Diagnosed in 2011 at age 52.

2 - How did Aspergers affect you before you were diagnosed?

Did poorly in school in spite of native intelligence. Failed to finish a university degree in 3 attempts. Have always been utterly clueless regarding all the human activity around me. Professionally never successful. Financially a mess.

Extremely blessed with a wife that has stood by me through it all.

3 - Most importantly, how are you post-diagnosis? Has your condition improved, and how are you dealing with what happened to you?

Ask me again in few years. The length if time between my official DX and today is still measured in days. It has been a very interesting past few months. We'll see how it goes.

---

Am ADHD Inattentive with central auditory processing disorder (CAPD) and mild, left-side dyspraxia. I was diagnosed with these symptoms when ADHD was known as Hyperkinetic Syndrome of Childhood, CAPD had not yet been invented, and the term dyspraxia was not widely used at all. A number of doctors felt I might have petit mal (symptom of inattention) but it turned out to be ADHD Inattentive. I do not respond to medicines for epilepsy at all. I do respond, noticeably in a positive fashion, to the old medicine, coffee - caffeine compounds (a known alerting agent), which reduces my distractibility a little and increases my attention span a little (not a cure). I did not care for the awful experience of trying to talk with persons who used terms which did not relate to or clearly describe what I had at all. When I tried to tell them I had some sort of very subtle difficulty with paying attention and short-term memory, I was not given good answers/the correct answers/clear answers to what I had. Only one doctor I met knew anything about coffee - caffeine and nutrition at all; that was the doctor who helped me and helped clarify in a major way what I was born with. It's a lot easier today, year 2011, to come across the right terms/right labels than decades ago since the terms did not even exist.

edit

1 - 1960
2 - I wasn't diagnosed until I was 47. Speech delay until 4. The condition impacted every area of my life. Social, Physical, Comprehension, Emotional, Tactile Sensitivity, Hyposensitivity with Light and Sound, ADHD, Auditory Processing issues. I was able to function with routine and structure. Stress was necessary for me to focus. My long term memory was extremely good. I maintained my will to survive and didn't think much about the issues I had. Just did what I had to adapt.

Finished highschool close to the top of the class. Got three degrees in college while working through horrible depression and questioning my existence. Feeling like I didn't fit in with any group or person in the world. Being fortunate to find a job with the government where employees in general had protection, although I didn't have a diagnosis. I was the luckiest person alive to have the support I had from my family and wife. Otherwise I wouldn't of had a chance in h*ll.

Up until age 45 I was still adapting with my circumstances but workplace stress and social requirements got the best of me, and I just couldn't keep all the social and intellectual marbles together. I ended up being an Athletic Director at a Military Base. I guess you can say I rode the wave of life as long as I could until I fell off. I couldn't turn my adrenaline off; my hyposensitivity to light and sound turned into hypersensitivity. I didn't have ADD anymore only hyperfocus and awareness of what seemed like my whole environment at one time. I became unable to tune anything out. I really felt like I was becoming more Autistic. Started having cognitive functioning issues. My physical body gave out from the adrenaline being stuck on, and I literally hit a brick wall.

3. I got diagnosed with Aspergers and then PDD NOS, because of the language delay when I was young. It was a horrible year long process, and the hardest thing was explaining that the things that were happening to me were really happening to me to the psychiatrist. After what I had accomplished in life, he couldn't understand why I couldn't get over it and get back into the game. Everyone thought I looked okay, but I could hardly move, for a year because I was so worn out.

I also continued to have the overwhelming survival instinct that I had my whole life to prove to people I was okay and deserved to be here, even with the psychiatrist who I was trying to explain what was wrong with me.

I waited too long to get help. I used too much adrenaline to adapt and my stress response is almost non-existent now. I have been working to get it back for three years, and am basically surviving on a day to day basis. I also have a co-morbid condition with nerve sensitivities and pain in my right eye and right side of my face, that no doctor has been able to help. Nerve and sensory problems can be so complex. I have isolated myself from the world that I found so rewarding to be part of.

I blame myself for much of this. I would never admit to myself that I had a problem I couldn't fix, my whole life, including me and everything else. It was really hard for me to get help because I had to face the reality that I wasn't okay. I was also terrified of leaving work because I had always been involved in a rigorous routine all my life. So much, that it defined my identity almost 100% of the time.

It has been three years and the last couple of months are the first time I have been able to tolerate the pain in my eye enough to do any computer work. I am desperate to keep my cognitive abilities from totally turning into mush. I am terrified of dementia and understand what they mean by if you don't use it you lose it.

I am still the luckiest person in the world for the family that as stood by my side through all of this. They deserve more than I could have ever gave them.

Given the opportunity to be born without the condition, I would still of chosen to have it, I feel like I experienced more of the world because of it, for an 18 year stretch I was content. The only thing I regret is I didn't give more of myself and do more for the people that loved me.

The way I see Autism is that we take in and absorb more of the world than other people do and can get lost in it if we are not grounded. For the most part from the people I have known with Autism and from some of the opinions I have heard here and at least from what I have felt in my life: I have always seen myself as male but have been seen and judged as somewhat feminine early in life and strongly masculine later on in life. In my mind I have felt genderless, if there is such a thing. I score extremely male brain on tests that focus on systemizing and empathizing, but exactly in the middle on more comprehensive male/female brain tests. I didn't prefer toy soldiers or dolls, for some reason I always found babies repulsive, I couldn't stand to hear them cry and was literally afraid to touch them or hold them (this did change when I had a child, though). I just wanted to learn everything about the world. And, for the most part this seemed like an effective balance for success in the academic world.

I was always interested in girls, but really didn't have a desire to have children, although my wife did. I can't help but to think that hormones, brain development, and the desire to have children has something to do with at least some of the people that are diagnosed on the Spectrum.

Although people on the Autism Spectrum can have a significant positive impact on the world around them, intuitively I've felt the voice of nature telling me accomplish what you can, but not a good idea to have children. I sometimes wonder if the development of Autism in some cases is a response in nature to limit reproduction and enhance the ability of others to survive.

This kind of thing is seen in other social animals, so maybe there is also something like this going on with ASD's and/or humans. I was an Anthropology major and came to theorize this for the period of time when I speculated, why was I here, so it is colored by Anthropology. The thing is, though, I had no idea about Autism at the time and it only applied to me. I have read at least some research, not all Autism related, that has bits and pieces of it, but I will call it pure speculation for myself. But, if autism is, in part, a response to nature, possibly as a result of an environmental stressor that alters hormones and brain development in one generation, it won't be going away anytime soon in the future.

Sorry for the long post, but I have been wanting to put this in words for a while now, and am wondering if anyone else can relate, particularly those that were diagnosed late in life, and didn't know what they had when they were young. I'm not trying to start another theory, most of this is based on me. Although, I do have a sister, with aspergers, that has had close to the same experience in life.

Good luck to you on assistance. I was diagnosed with Aspegers then PDD NOS, along with co-morbid conditions of anxiety, depression, immune system disorder with my eyes, fibromyalgia, dysautonomia. I attribute all of the co-morbid conditions from the lifelong stress of adapting to life with Autism.

I was physically healthy up until age 45. As far as medical retirement from the Government, the only condition considered disabling was depression, even though at the time I had a letter from an ophthamologist stating I couldn't look at a computer screen for longer than five minutes and also one from a rheumatologist stating that I was permanently disabled.

Depression is the leading cause of disability in the world, there may be a good chance your SSI gets approved, due to the depression. My depression feels more like worn out than sad.

Thanks.

I have heard that some mental illnesses (like depression) can make it much easier to get disability than others. I know others have had difficulty with ADHD and Asperger's Syndrome, although I do know a few who managed to get on disability with one or both of those.

I fully expect to have to apply for reconsideration (and already have to apply for SSDI) and a hearing.

I should clarify, the Medical Retirement from the Government that I was referring to was Civil service; their requirements are more rigorous than SSDI. As a condition for applying for the Civil Service Disability Retirement I was also required to apply for SSDI. They did consider all of the conditions. I had over 100 pages of medical documentation, and was fortunate enough to get qualified without a lawyer on the first try for SSDI. I also know an individual that was qualified for SSDI just on the basis of fibromyalgia, but it did take repeated attempts and a lawyer.

I do hope that you get qualified for SSI on the first attempt while you are going through the ardous process for SSDI. Just from your postings it sounds likely to me, if you meet the financial requirements.

Thanks for clarification and the good wishes.

The hard part is proving that I have lifelong disabilities when I was basically never allowed near a psychiatrist or a therapist (abusive environment, it would almost certainly have come out), and thus have little or no records - beyond school records - to prove this. Hopefully treatment now for these things plus my lifelong history of trouble with school as well as work will make it easier to demonstrate.