Problems being one of the "Lost Generation" of Autism

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hello
I thought I would start a post on the problems that people from the lost generation of autism sufferers may find in life which perhaps are different than the people who have received a diagnosis early on in life.

The lost generation of autism refers to people who have been diagnosed with Autism Spectrum Disorder and or Asperger Syndrome late on in life, for example. I myself am one of the lost generation in that I received the clinical diagnosis last year at the age of 44 years.

Where people may see no difference when a person may have got their diagnosis, I would say that for many, having a late diagnosis is significant in that such people may have problems caused by living most their lives without having an understanding of the condition that they suffer, as well as the lack of understanding and support from people all through their life.

I for example, have had problems getting and maintaining employment all my life. I believe that a big reason for this is because I suffer from many strong autistic traits which make me unsuitable for most jobs, especially long term, and make me prone to being subjected to victimisation and bullying in the workplace, which, due to having a lack of coping skills for dealing with conflict, often results in me getting sacked or unfairly dismissed.

I also feel that not having an understanding of the condition for most my life, meant that others also likely victimised me because they did not understand that the reason why I acted in certain ways was because I suffered from Autism Spectrum Disorder. Although of course it is hard to tell as to whether the people would have still subjected me to the same treatment if they had known that I suffered the condition.

What can I say, some people are douche bags, so will look for vulnerable people to victimise and take advantage of.

Anyway any one else out there a late diagnosis "Lost Generation" and if so, what is your take on your own experiences?
Thanks

I was dx'd at 58, and my experiences parallel yours. As far as the workplace goes, my guess is that if you are diagnosed then fellow workers may well bully you by not believing the diagnosis.

One of the biggest problems was lack of training in doctors for recognising aspergers, then a long long struggle to be officially diagnosed.

"Although of course it is hard to tell as to whether the people would have still subjected me to the same treatment if they had known that I suffered the condition." - I think they may well have done, or the bullying may have been worse, but I am very cautious and have a negative opinion of humanity.

Sure. I understand. But I guess at least having a diagnosis gives some protection in terms of employment law if we are able to prove to a discrimination board that we are being subjected to mistreatment.

Having the diagnosis also may be useful for explaining any unusual behaviour to boss's who may otherwise sack us for our reaction to being bullied etc. Or for any other strange behaviour that may arise from having autism spectrum disorder.

36. I exhibit many characteristics of HFA but have never had the opportunity to get tested or diagnosed. I've struggled at many of the jobs I've had, and am often dismissed after first interviews when looking for a job. Nearly every job I've ever had was of "just hire anyone who passes the background and drug tests" variety, which are always lousy and have low pay. Despite having a Bachelor's degree. And I've also struggled to maintain jobs. For example, my last job was as a customer service rep for a third party call center; which meant that not only did I constantly get angry callers, but I could not do anything for them other than offer for someone to call them back on the next business day. Needless to say, my anxiety could not handle this job for long. Before that I could not find employment anywhere for several months and was homeless because of it.

Diagnosed at age 55 back in 2013.

I would say my very late diagnosis is both a blessing and a curse.

The blessing is I did not have a label telling me what I can't do. Both me and others expected me to accomplish "normal" things and while I did not become normal I do think I accomplished more than I would have if I was labeled early and was not mature enough to handle it.

The negative parts have been similar to the OP's. While being ignorant helped me accomplished "normal" things I am not "normal" and when I inevitably did not accomplish some things the only explanation available for me and others were character flaws. That was damaging to my self-esteem as has led me to by more cynical than I need be. I realize that decisions made in ignorance of who I am have had negative life-altering consequences.

The fact that neither I or anybody else knew has helped me accept the mistakes myself and my parents made. Many late diagnosed autistics are deeply pained by what could have been if only the knowledge was there. My attitude is because the knowledge was not there they never could have had been.

That was then this is now and the knowledge is there. Having lived so long clueless it does really anger me when people constantly say Autism is just a new term for being lazy or an attention seeker and other character flaws. Also because of my experiences the anti-vaxxers that keep on saying they are right because there was no autism when they were young make me pretty angry.

To me, I think the biggest problem of being part of the "Lost Generation" is the assumption that because I managed to survive before diagnosis, I can't really be needing any support now. All of the jobs that I've lost, friends that I lost or never made, lack of romantic relationships, and most of all, periods of severe mental illness tell a different story. I may have "survived", but only at very high cost to my well-being, and frequent access to crisis services, unemployment benefits, etc. Only one professional that I've ever spoken to has even acknowledged the difficulties that I've tolerated for nearly half a century and how they are a huge causative factor in my mental health problems.

It seems that the general attitude is that my generation is past being able to benefit from supports and can be ignored and expected to just continue as we are. Meanwhile, there seems to be an assumption that more recent generations won't experience the problems that we have because of early interventions - yet there is little evidence that this will be the case.

Everything OP says, it's been a case of scraping by, cycles of nearly achieving goals and stability followed by implosions.

ASPartOfMe has it exactly right.

When I was a child, hyperactivity was the popular diagnosis and was treated with Ritalin. Horrible stuff! it made me into a zombie. I can't believe people actually buy the stuff, crush it and snort it today. I was energetic, but not hyperactive in the classic sense. When I look at my life, I think I was definitely on the autism spectrum, high functioning academically, but socially very backward.

My mother was one of those people who wouldn't accept teachers telling her that there was anything wrong with me, so even if there had been a greater understanding of ASD in the 70s/80s I'm not sure I would have got diagnosed in childhood. School was such a bad experience however that I was completely destroyed as a person by the end of it, I managed to limp on into work for three more years but then effectively dropped out of society at 20 and have been pretty much doing my own thing ever since and, for the most part, been much happier for it. With an early diagnosis I'd have probably found it harder to break the mould.

I was lucky to have been diagnosed at 5 and a half. I'm two days shy of 44. I wonder if my mum really cared about me or if she wanted me to be diagnosed with something for her own gain, so that she could force normality on me.

That sounds like my life too. Now that I understand myself a little better after learning about AS I’m not pushing through stress anymore and my big goal is to stop the cycle of burnouts. The older I get the longer it takes to recover.

Now that I've learnt about AS I'm taking it easy too...or too easy, can't decide which.

This thread is giving me a sense of belonging, there are many shared experiences that chime with my own life here. The main benefit of the dx at 58 is that I have stopped blaming myself for things.

Socially I'm still completely psychologically free range after a stellar career in my twenties as a psychedelic tramp and prophet. My appearance now is that of a dishevelled geography master when I can take the trouble to make myself look presentable. A tiny peer group of undiagnosed possibly very HFA nerdy males helps, so not completely alone. Cannot relate to normality at all, cannot deal with the proximity of it for too long. This thing is like a schizophrenia styled personality disorder, very mild thank god.

prodome