Asperger people diagnosed in their forties

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MY son was 48 when he was told he had Asperger Syndrome. He was thrilled to realize his odd approach to life was neurological rather than willfully weird. Tim Lake (PARALLEL PLAY) and John Robeson (LOOK ME IN THE EYE) wrote entertaining books about their painful hassles getting through life totally misunderstood. But they said little about how their behavior affected their parents and siblings. I wrote SUCKING UP YELLOW JACKETS from the point of view of a parent struggling with an out of sync child who seemed to live under a harsh spotlight. There have to be others diagnosed late in life.

I am fifty years old now. I never heard of Asperger's until my late thirties when a counselor said she thought I probably had it. I read the list of symptoms and light bulbs went off over my head as I recognized many things I had experienced all my life that were different from the way everybody else I ever heard of experiences life. I self-diagnosed as soon as I read the list of symptoms, but since then I have been tested and officially diagnosed three times the past ten years.

After falling through cracks in society and health care all my life, I am finally set up with the Developmental Disabilities group of the local public health office. They have set me up with resources. I even have a personal agent to advocate for me and help me cope better with the sensory and social issues that have hurt me my whole life.

In my early forties, before I was officially diagnosed, a doctor asked me why I wanted a diagnosis since there is no cure. Them's fightin' words to some aspies: the idea that we need to be "cured." I told him that even if there is no cure yet, I wanted an accurate diagnosis in my medical records in case we ever do learn more, and so I can be on the list as a potential subject for research into the condition. I for one would like to have some relief from the sensory overload causing meltdowns, and if I could read social cues better and also signal my social cues to others better then my interactions with other people would be a lot easier.

I appreciate the gifts resulting from my neurology. I have encyclopedic knowledge of many subjects, beyond encyclopedic knowledge on a few narrow topics, and if not for the way I experience life I would probably never have become The Bicycling Guitarist. If there is any meaning to my life at all, I now see that as why I exist.

i only got diagnosed in my early 40s. it was a bit anticlimactic, in that i knew i had something major wrong with me that heretofore hadn't been described to me, so when what i had/have finally was named, it was an "oh, that's interesting" kind of thing. now i have a single term to describe me, instead of a mouthful of mushy descriptors. when i saw a child shrink in elementary school, i peeked at his notes and remember seeing phraseology resembling something like "schizoid personality disorder."

Yeah I was misdiagnosed and misunderstood my whole life. Back in the 1960s the doctors didn't know what to make of me. They called me manic depressive, hyperactive, and possibly schizophrenic. I was on Ritalin for ten years beginning at age five and saw shrinks regularly throughout my childhood. The kids today who are diagnosed early are luckier in some ways, but will they appreciate it? Bah!

My son would agree that he wouldn't give up his Asperger thinking. He's an engineer whose ability to think outside the box keeps him employed. Like you he wishes he was able to interpret social cues, but feels the benefits of an AS mind outweigh the losses.

i'd love to have a bit of that intellectual giftedness that many posters here like to ascribe to aspies in general.

I don't equate it with intellect. From what I see, it's more the way Aspies' minds work. As my son describes it, it's the capacity to think in terms of how rather than if something will work. That coupled with good memories for facts and ideas that catch their imaginations and the ability to use these.

Dx'ed @ 44

Do you think being diagnosed later gave you a different view of the Syndrome than children who are diagnosed as small children and given understanding and special schooling? I feel it was hard for my son to spend half his life feeling he was peculiar. He was fortunate enough to go to an engineering college where he was surrounded with like minds, but the world outside his purview still gives him a hard time.

I think so. For the first forty years of my life I had no clue why I experienced life so differently than everyone else. I tried to be like everyone else and failed miserably. If I had known more about my condition, I could have made better choices and also explained better to other people why I was different.

On the one hand it is comforting that I am not the only one with the sensory and social issues I have. On the other hand, it is depressing that there are so many people with similar issues. What confuses me is why, if there are so many people with similar issues, why did it take me forty years to find out about this, and why aren't more people aware of and sensitive to these issues. I know I've been the recipient of much harsh judgment by many people all my life because they just don't understand what it's like to be me. In the past some people even accused me of making stuff up or that the way I feel is from choice, as if I would choose to suffer from sensory overload and social rejection, right!

In this country Asperger Syndrome wasn't known (or I should say recognized) until 1994. Because my son was so clearly far too bright to continually make the social mistakes that kept him in trouble, it was assumed that he was just being willful and uncaring. He had the additional hassle of being bracketed by two children who were wonderful at reading social cues, a mother (me) who had spent her life trying to be invisible and a driven father who had no clue what made children tick. We tried everything, private schools, public schools, psychiatrists and therapists. They all agreed that his mind perceived the world differently, but too often I was just told I should be more harsh and say, "No." This was compounded by the permissive era. And for ten years we lived in a town with a curfew. We spent a lot of time in police stations and courts.

Re the original question: First pursued diagnosis at about 50.

Made it that far without anyone suspecting by living either abroad (foreigners are expected to act oddly and struggle for words, it's what makes them foreign) or, when in the U.S., deep inside the geekosphere. Eventually I got promoted up and out. It was only weeks before I landed in the company counselor's office. The rest is predictable.

As for why to bother with diagnosis... I did not, initially, until it was brought to my attention what it could do for my parents.

Diagnosis rewrites 50 years of history. Diagnosis transforms the story of failed parents who turned their promising daughter into a drifting underachiever into the story of preternaturally intuitive and effective parents who, with no instruction and no support, taught their girl such brilliant coping skills that it took 50 years for anyone to realize there was a problem.

What better gift could one give one's parents?

-- RF

rf wrote: Diagnosis transforms the story of failed parents who turned their promising daughter into a drifting underachiever into the story of preternaturally intuitive and effective parents who, with no instruction and no support, taught their girl such brilliant coping skills that it took 50 years for anyone to realize there was a problem. What better gift could one give one's parents?

No greater gift! This brings tears to my eyes so thanks for writing this. If you get a chance, I'd really love you to share what were some of those brilliant coping skills your folks taught you! I'm a NT parent and would love to know.

That's hard to do, since it's really just a large set of scripts; basically Emily Post turned into flowcharts.

My parents did get three things right, very early on.

First, they made it clear that in any social situation, it was not about me. My birthday, my wedding, my graduation, the fleeting greeting in the hallway, were not for my benefit, but were there to make others happy. Life become much smoother once I got that.

Second, they understood that they needed to provide "flow charts" for social interactions, and they somehow intuited that providing a rule would not work, but providing a choice would. So my mother never said: "You must look at someone when they say your name." She said: "When someone calls your name, if you look at them, they will think you are paying attention and they may react positively. If you do not look at them, they will not be able to tell that you are listening, and they will probably react negatively."

They also impressed on me early on that positive reactions are fleeting, while negative reactions are lasting. (The actual lesson was: "If you break it now and need it later, you will have to fix it. Better not to break it in the first place, just in case.)

Third, and most important, they got that social interactions were exhausting and they went out of their way to create me-time before or after the event. So, for example, birthday parties generally started without me. The guests would come, the kids would play, and I would stay upstairs "getting ready" (reading a book). Then, there was a grand entrance, opening of gifts, cake, after which they would take the spotlight away, do something with the guests, then wrap things up. They kept me busy, opening gifts, serving cake, thanking people, always something to be doing, always a procedure to execute, until the end. If things began to get overwhelming, they'd offer "bathroom breaks."

Then, later, at the exact moment when my body completed its most recent full rotation around the sun, taking into account time zone differences and roughly allowing for the geographical offset from Sacramento to whatever point on the globe where we happened to be (truly, my father was an engineer, so he actually did calculate these things; or, at least, he convinced me that he was doing so), we had "real birthday," a quiet affair with a cake that I actually liked. Afterwards, alone in my room, I would find the real presents, the ones we did not show the other kids (the grammars, the dictionaries, the tesla globes, the mensa puzzles... the geeky stuff).

How they knew to do all this is a mystery to me. Their own parties and parties for my siblings were very different. I asked my mother once how they knew what to do. She tells me I was good about telling them how to organize things, and that all she "got right" was taking me at my word. Perhaps. I certainly don't recall that.

(It was not always perfect, by the way: my 13th birthday party, during which my aunts dragged me screeching from my room (literally) to blow out candles is still a family legend (mostly because someone took pictures).)

In any case, a long answer to a short question. Does any of it help at all?

I was over 40 before I even HEARD of AS! I saw it, and it was like they were describing my life!

Steve

I was in my 30's before someone told me.

Before that, I just thought I was crazy and tried to adapt. I was relieved in one sense to finally have a name for it and know I wasn't alone. But I was also very angry that someone hadn't picked up on it sooner. I wasted alot of years being way too hard on myself re-playing all my failures while trying to play the "normal" game.