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Is early diagnosis a self-fulfilling prophesy?

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androbot01
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02 Sep 2015, 9:09 pm

B19 wrote:
If the things that happened to me then had led to labels slapped on me, (it was a far more victim blaming culture then, believe it or not) plus the label of "handicapped" (a word they loved then) I think my early life would have been even more difficult to overcome. And it is likely that my fairly bright brain would have been drugged into dullness and inactivity by powerful and harmful psychotropic medications they used then, like sledgehammers, to keep everyone in line and no-one stepping out of it.

That is a what-if. No one knows what would have happened if. And the drugs they had then are not the same as the ones they have today.



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02 Sep 2015, 9:24 pm

StarKid, I don't think you meant to insult older members, but I read what you wrote as negative about me too.

Some of us may have mild autism as autism goes, but relative to being neurotypical it may not seem mild.

As an aside, there were some social groups going way back, though baby boomers would either have been diagnosed with autism like Kraftie or maybe nothing, but the issues were there and sometimes schools wanted to do something so they did have them. Though for some reason people don't seem to talk about them much.

Both you and Androbot are saying the same thing, that no it's not a self fulfilling prophecy. I agree, it's not.

I hope you'll both make up soon :)



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02 Sep 2015, 9:38 pm

B19 wrote:
Decades ago, when I began university, I look back and think that a fair proportion of people there probably thought that I was "quirky". I had no trouble making friends because people came to me to ask for help when they were stuck on an assignment. So, wanting to keep that option open, they were on the whole careful not to offend me. They didn't have a default label to pin to their experience of me; they accepted me as an individual, quirks and all. "Eccentric" and "radical thinking" were no doubt other things they may have thought and said.

But I didn't have to face the nasty insults that exist now - the 'r' word; "weirdo"; sperg; "an assburger" "oh she must be on the spectrum" (as if that explained the true individuality and gifts of any person - but that's how it is used now, to label and diminish). Once you are saddled with derogatory labels, people expect less of you; and a lot of the labelled people (sadly) then live down to the low expectations. That's the self-fulfilling prophecy.

If you are fortunate to have wise and informed parents, who are true guides to things like life skills, building confidence, setting goals and developing patterns of achievement, with loving support and acceptance and approval in the background, I am happy for you and you are blessed; most young people today do not have parents like this, and targeted support - like life skill courses freely available for young people on the spectrum -are very thin on the ground. That is a pity; perhaps it is more than a pity, maybe it is a disgrace.

Yes, we seniors had our problems too, that were a product of those times and attitudes, when conformity (everyone was supposed to be basically the same) was so imposed. We stood out amongst that as children like sore red toes. We were shunned in the playground, bullied just as much as now (perhaps even more, there was no regard at all to protecting children then) isolated and forced into sports that humiliated us, taunted and socially excluded. We were naive and took people at their word, thinking they meant what they said. We suffered, and young people on the spectrum also suffer now. It's not a competition, is it..

Yet most or many of we oldies developed goals, skills, strategies to navigate our way through the dark and thorny forest somehow. We wanted so much to "fit in" that we tried hard to do that, and many of us learned (more or less) to pass well enough in certain circles. We had to learn, it never came naturally. But notice that we believed that we could learn these things.

Nothing in my early life was easy, as I have written about in other threads previously. Much of it was a completely unnecessary horror story. (I came eventually to look back on it as a master class in surviving and survival). If the things that happened to me then had led to labels slapped on me, (it was a far more victim blaming culture then, believe it or not) plus the label of "handicapped" (a word they loved then) I think my early life would have been even more difficult to overcome. And it is likely that my fairly bright brain would have been drugged into dullness and inactivity by powerful and harmful psychotropic medications they used then, like sledgehammers, to keep everyone in line and no-one stepping out of it.

So here we are - old and young. Neither has or had it easy. It's not a competition. We suffer, because society is as yet unwilling to accord us equal respect and dignity. But we must get in the habit of according that to ourselves and to each other, whenever we can.

I agree with you, people seem to throw diagnostic labels around a lot more now. I am curious though as I remember some name calling by peers and although I was fortunate and for the most part teachers kept high expectations for me, there have certainly been times that people labeled me too weird or different and therefore less capable or even incapable. What is the change this you're seeing? To me people have always labeled, it just seemed to less often be a diagnosis many years ago and might just have been a word, like weirdo, geek, r----- etc.



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02 Sep 2015, 9:51 pm

Growing up in the 1950s and 1960s, the word "geek" had not yet been invented, and I personally never heard anyone called a 'weirdo' then. The words that were used then in the common parlance of the day for 'different' children were: "simple" "slow" "handicapped" "a bit backward" or - much more often - simply "doesn't try hard enough" or "lazy". Over time both the culture and the lexicology has changed; yet the problems of growing up on the spectrum (it seems to me) have not changed much at all. The suffering goes on.



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02 Sep 2015, 10:20 pm

B19 wrote:
Decades ago, when I began university, I look back and think that a fair proportion of people there probably thought that I was "quirky". I had no trouble making friends because people came to me to ask for help when they were stuck on an assignment. So, wanting to keep that option open, they were on the whole careful not to offend me. They didn't have a default label to pin to their experience of me; they accepted me as an individual, quirks and all. "Eccentric" and "radical thinking" were no doubt other things they may have thought and said.

But I didn't have to face the nasty insults that exist now - the 'r' word; "weirdo"; sperg; "an assburger" "oh she must be on the spectrum" (as if that explained the true individuality and gifts of any person - but that's how it is used now, to label and diminish). Once you are saddled with derogatory labels, people expect less of you; and a lot of the labelled people (sadly) then live down to the low expectations. That's the self-fulfilling prophecy.

If you are fortunate to have wise and informed parents, who are true guides to things like life skills, building confidence, setting goals and developing patterns of achievement, with loving support and acceptance and approval in the background, I am happy for you and you are blessed; most young people today do not have parents like this, and targeted support - like life skill courses freely available for young people on the spectrum -are very thin on the ground. That is a pity; perhaps it is more than a pity, maybe it is a disgrace.

Yes, we seniors had our problems too, that were a product of those times and attitudes, when conformity (everyone was supposed to be basically the same) was so imposed. We stood out amongst that as children like sore red toes. We were shunned in the playground, bullied just as much as now (perhaps even more, there was no regard at all to protecting children then) isolated and forced into sports that humiliated us, taunted and socially excluded. We were naive and took people at their word, thinking they meant what they said. We suffered, and young people on the spectrum also suffer now. It's not a competition, is it..

Yet most or many of we oldies developed goals, skills, strategies to navigate our way through the dark and thorny forest somehow. We wanted so much to "fit in" that we tried hard to do that, and many of us learned (more or less) to pass well enough in certain circles. We had to learn, it never came naturally. But notice that we believed that we could learn these things.

Nothing in my early life was easy, as I have written about in other threads previously. Much of it was a completely unnecessary horror story. (I came eventually to look back on it as a master class in surviving and survival). If the things that happened to me then had led to labels slapped on me, (it was a far more victim blaming culture then, believe it or not) plus the label of "handicapped" (a word they loved then) I think my early life would have been even more difficult to overcome. And it is likely that my fairly bright brain would have been drugged into dullness and inactivity by powerful and harmful psychotropic medications they used then, like sledgehammers, to keep everyone in line and no-one stepping out of it.

So here we are - old and young. Neither has or had it easy. It's not a competition. We suffer, because society is as yet unwilling to accord us equal respect and dignity. But we must get in the habit of according that to ourselves and to each other, whenever we can.


Grew up in the US in roughly the same era, and it astounds me that you never heard the word "ret*d". That was par for the course for aspy Americans of our generation: to hear that from the lips of our playground peers. Either the R word must not have reached NZ yet, or you must be blocking memories of hearing the word from your mind! Or maybe you grew up on some nicer planet than Earth!



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02 Sep 2015, 10:28 pm

Sadly it arrived eventually and is used here now, particularly by the generation born in the past 20 years, and it has gained currency over that time. It is frowned upon by people my age (the boomers here) and I have never heard any of my baby-boomer peers use it in conversation, it is regarded as extremely offensive, low class (of the person who speaks it), politically incorrect and just "not done" in civilised circles. Like the N word, or one once in currency here, "half caste". They are just regarded as unacceptable now by my peers and elders (thankfully).



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02 Sep 2015, 11:29 pm

starkid wrote:
It's doubtful. In the past as well as today, the most severely affected people are the ones who are most likely to get diagnosed early on. It doesn't matter if autism or Asperger's are familiar to doctors or not, if one is severely affected, one will get diagnosed with something, correct or incorrect. If these middle aged members you mentioned had been severe enough when young, they'd likely have ended up in mental institutions, diagnosed with schizophrenia or something. The simpler explanation is that these older members are more mildly affected.
A most astute observation.

In a way, it's like I made a sampling error because most of the middle aged aspies here were so mild that their problems went undetected. The rest are in the nut house without internet access.


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02 Sep 2015, 11:32 pm

There is an extreme paucity of information on this. A survey was done in England some time ago - the self reports of the respondents was were very sad reading and extremely moving. I don't know if I will be able to find it again as I can't remember the title nor the author of the subsequent report.



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02 Sep 2015, 11:57 pm

"Weirdo" and "ret*d" were very common insults in the US during the 1960s and 1970s.

Richard Nixon used "weirdo" quite a bit. It must have come from "pinko," meaning someone who leaned towards communism.

I was often told that I was "touched," too. Touched, as in "tainted."



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03 Sep 2015, 12:16 am

I was surprised to learn that the first book published in English about autism was 1991, from this commentary on the experience of older adults who grew up unaware and undiagnosed:

https://iancommunity.org/cs/articles/ve ... r_syndrome

This letter, from a middle aged man with Aspergers, with a young son also on the spectrum, is a moving and sincerely written piece:
http://www.aspennj.org/pdf/information/ ... ith-as.pdf



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03 Sep 2015, 12:29 am

kraftiekortie wrote:
"Weirdo" and "ret*d" were very common insults in the US during the 1960s and 1970s.

Richard Nixon used "weirdo" quite a bit. It must have come from "pinko," meaning someone who leaned towards communism.

I was often told that I was "touched," too. Touched, as in "tainted."


Yes, I do recall hearing "touched" used. Cultural difference: we didn't use the term 'pinko' here - it was more "reds under the bed" stuff or "bloody communist". The fact that they were non-conformists was probably more frowned upon actually than their politics. It was a pretty straitlaced conformist era. Couldn't wait to get out of it (and I did :)



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03 Sep 2015, 2:07 am

Late diagnosis can lead to other mental health problems. They only picked up on it when they tried to institutionalise me. It's picked up on because of depression, anxiety, or eating disorders in those of us diagnosed as young adults in quite a few cases. We get in a mess. I think maybe less of those diagnosed early have that problem. If it's found early then support and coping mechanisms can be put in place to try to prevent that from happening. I actually think I have less chance if getting a job than if I was diagnosed early. Not going to stop me trying though.



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03 Sep 2015, 5:08 am

I was diagnosed when I was 8 but the support wasn't great. When I was younger they made me go in groups with lower functioning autistics (still verbal), which I resented. Some of the the good things where that my primary school gave me a laptop (before this was standard practice) and in middle school there was a support group that helped a bit. There was no help in high school though that was I needed it most of all. It wasn't my former brattiness that was depression. My grades plummeted and I almost didn't graduate.

Not only did I not have good enough grades to get into university but more importantly, my untreated problems left me with no desire to go. The high school councillor did nothing to address my problems. With treatment during those years I'd be in a better position today.


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03 Sep 2015, 7:17 am

RetroGamer87 wrote:
In a way, it's like I made a sampling error because most of the middle aged aspies here were so mild that their problems went undetected. The rest are in the nut house without internet access.

Will you stop making stuff up.



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03 Sep 2015, 8:43 am

btbnnyr wrote:
Some people's parents make too big a deal out of childhood autism diagnosis.
If a kid is somewhat intelligent and ok-functioning, I think it is worse to make a big deal of autism and grow up infused with autism-related stuff like social therapies, autism management techniques, special programs, constantly hearing about "your autism", etc.


I think that is correct. A person needs all the help that they require to struggle as normally as possible, not so much help that they don't struggle with any challenge at all, or shy away from any obstacles in life when things get tough.
Some parents seem more focused on the "tragedy" of their kid's autism than in just helping the kid deal with life in the most effective way possible.

Temple Grandin has good things to say about that.



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03 Sep 2015, 9:30 am

Adamantium wrote:
Temple Grandin has good things to say about that.


I read what Temple Grandin had to say about that, and quite frankly, I found it offensive and damaging. It's basically just another 'kids these days' grump, with no serious consideration of what it's actually like to grow up in a different generation.

I was diagnosed at 15. Which, by some standards is counted as a late diagnosis, but by other standards it's early - I was diagnosed before entering university, before trying to get a job, before trying to live independently and before I'd figured out my sexual orientation. So, if diagnosis is a self-fulfilling prophecy, it should have affected me too. And indeed, I'm now a 26 year old who lives with her parents and has never been employed and never had or seriously sought out a romantic relationship. (I am in university, though.)

But if anything, I think my diagnosis has made me function better, not worse. Instead of just moving out and then ending up homeless or sick or both, as many undiagnosed autistics with my level of disability have, I'm working on a plan for learning the unspoken independent living skills, or else ways around them. I doubt I'd have gotten a job undiagnosed, either, because I knew myself well enough even as a kid to know I couldn't handle serving the public and the jobs I think I can do are few and far between. I also don't have a driver's license - neither does my Mom, who hasn't been diagnosed with any neurodevelopmental issue. (Whether she has something or not, she doesn't have the diagnosis.)

And older people might think it's whining, but the truth is, life is harder for my generation - NTs as well as autistics. There aren't many jobs (many are still being held by older people, who have seniority, and the fear of the cost of caring for retired baby boomers has led to the age of retirement being pushed back), and university tuition and cost of living continue to increase dramatically. More jobs require a university education, too, so if you can't afford the skyrocketing tuition, good luck finding any job above minimum wage. And that reminds me - increase in minimum wage has not kept pace with increase in cost of living, so minimum wage workers now are effectively poorer than they used to be.

So it's no surprise that autistics, who already struggle more than NTs, would be doing poorer in a harder economy.

Personally, though, I doubt I'd be employed and living independently by 26 if I'd been born in the 60s, either. My guess is I'd either be living with my parents, like I am now, or I'd be somewhere even worse.