On adjusting your own expectations post-diagnosis

Post Reply New Topic

(Too long, ranty, potentially boring, but I assume - or hope - some of you will still be able to find within at least a couple of relevant questions or experiences to relate with.)

I was thinking the other day about how people keep reacting rather badly to my unusual requests for further information,  even people within my (small) immediate social circle (despite knowing I'm autistic). I've tried to put myself in the shoes of one of them and a question that immediately emerged from the exercise was:

"Given my moderately "advanced" age (I'm in my mid-30s), do I really still need to collect so much data to reach conclusions about what people I interact repeatedly with are trying to say?"

It struck me the fact that I couldn't neither dismiss the question as an inconsiderate one nor answer it in any effective way.

(It's my solid impression that the average 30+ yo autistic person commenting over the web tend to report having had the time - and the cognitive resources - to develop a sufficiently functional way to estimate what most NT people are (probably) saying "between the lines," etc.)

Allegations that I was only diagnosed as an adult (approx. 1 year ago) and that I suffer with lifelong, rather severe symptons from a complex of anxiety disorders don't seem to provide enough "defense. (It took me too much time to even been aware other people didn't experienced the world in the same unpleasurable way I always did. As the anxiety is consuming/wasting most of my brain's processing power/working memory, it does seem to be necessary to collect a larger volume of data than most high-functioning autistics of my age would use to reach much the same conclusions.)

I grew up in a slightly poor family (or a low middle class one, by other standards) and from very early I was seen (both within and outside my family circle) as the typical gifted child. Accordingly, I was promptly offered (though not in a too explicit manner) the usual expectations reserved for a person one hopes will (alone) catapult his family to a whole new financial situation. Don't take me wrong: I was actually treated with love and care, in a respectfull and often even condescending way, but the (silent) expectations were hanging everywhere I went to and even I ended up being able to sense it very clearly. So, despitr all my obvious difficulties I was led to believe that I was not only able to live an absolute normal life (by NT standards) but also that there wasn't any alternative for me other than living a very disciplined and prosperous life, realizing all the obvious potential I so clearly exhibited during my childhood and early-to-mid adolescence. (It's also obvious by now that said apparent potential was mostly defined in comparison with the potential of people in my immediate, local community, and probably ended up being severely exaggerated as a result.)

(Here I guess that it's not that difficult to rightly associate the above description to the typical third-world scenario. I'm not even claiming any exclusivity here, just noting that it's (allegedly) more frequently associated and then still more representative of emerging countries than of their already fully industrialized couterparts.)

As a matter of fact, I did have my "glorious" days, especially in college, where I easily managed to become a very competent professional engineering student, also paving a solid way to graduate school (by beginning to pursue my own research interests, going to conferences, and seeing my first academic papers be published by intermediate-level peer-reviewed journals). However, in a (then) rather surprising turn of events, graduate school turned out to be a complete mess: I drop out of it after 6 torturing years, leaving with "only" a masters degree in my hands. "Coincidentally," those were also the years I was beginning to form my own family. Once my responsabilities began to accumulate my life entered a degeneration cycle whose endpoint I'm still unsure about (including an endless series of long term unemployment interspersed with crappy part-time jobs I couldn't maintain for more than a very short period of time).

(Yep, despite having an MSc in engineering I've not been able to get a decent job in my country. My prospects are not good: mid-30s, no experience in proper engineering jobs at all (graduated approx. 12 years ago!), unqualified for most research positions (having a PhD is absolutely necessary for entering public institutions, research jobs in the private sector are rare), unqualified for most teaching positions in the private sector as well (almost no teaching experience) or too overwhelmed by the task itself.)

For a while I've been adopting as my favorite rationalization the allegation that my bad life outcomes were mostly a result of not having being diagnosed as a child, not being put in a stable environment and given proper care/help. That's actually a common statement in numerous texts: that being diagnosed very early in life and being put into a humane environment will provide autistic people the opportunity of realizing their potential.

But how to estimate/predict this potential a priori?

How to determine what was the "true" potential of someone who's now an adult person and has not been offered said conditions earlier in life?

For almost 10 years now I've been trying really hard to counteract the symptons of my diverse anxiety disorders (with very poor results so far). But what if anxiety is an intimate part of my own " identity"? (Rather than something I could simply hide behind the curtains for all practical purposes.)

What if I'm not the kind of autistic person who can really live a completely independent life? What if I can't really stand a typical, stressful, full-time job? What if I should apply to some disability benefit and always depend on it?

How can I develop or access some effective way to evaluate the above questions in the more "objective" way possible?

Does it really sound unlikely? It would suffice to say that information processing abilities are not to be confused with raw intelligence and creativity. It seems to be a common understanding in certain circles that not being able to see simple, obvious solutions to your problems, or not being able to put them into practice is almost indistinguishable to a "lack of intelligence" of some sort. What's the difference between "having a less-than-expected apparent intelligence" and "having a less-than-expected apparent intelligence, given current anxiety levels"? It seems to be almost a given in society the image of the severily depressed, unadjusted, non-accomplished genius, but there's growing evidence that a great proportion of high IQ people are actually well-adjusted, accomplished, in great physical shape and almost free of mental illnesses.

I'm beginning to suspect that I'm a non-accomplished person not directly because of my anxiety disorders, but because I've been trying to live according to an irrealistic, inhumane performance standard/reference. Unfortunately, such a reference included marriage, which unsurprisingly ended up involving another autistic person. I know that what I'm going to say is a (very) controversial statement, but reproducing (another societal/NT expectation) in such situations may be viewed as a slightly irresponsible act, since we were hardly able to wake up in the morning and given the increased probability of giving birth to a low-functioning child (demanding a level of assistance we couldn't afford) - much in the same way one could interpret as irresponsible a couple having children in calamitous situations.

I would not lower expectations, be more realistic about achieving them yes, change the way you go about achieving them absolutely yes, giving up on them at age 37 No.

We just don't know about acceptance of autism in the future, but we do know at lot of things are accepted today that there seemed no chance of being accepted even 10 years ago.