Adult outcomes in the population

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For comparison, some 15 years ago I would have qualified only for "Fair" (obviously the modus, two categories below my current one), not living independently, having only one friend, no gf, but being employed as a trainee in a fix term job.

'What's your diagnosis?' polls:

http://www.wrongplanet.net/postt186862.html
http://www.wrongplanet.net/postt183940.html

I think that the studies mostly focus on children/young adults with severe disabilities, I mean, they not only have some kind of ASDs, they don't have average or above intelligence to at least partly compensate for their difficulties resulting from having an ASD, or have serious other co-morbids.

When "high functioning" folks are diagnosed with an ASD in adulthood or in late childhood (teens) it would be most likely AS partly due to its "popularity" partly due to its acceptance.

Furthermore, WP is known for being a place primarily for AS folks. So, when people diagnose themselves or suspect having an ASD, it's always AS, see forum options, or more specifically, the lack of them.

I know of cases when the forum option is deliberately changed to AS even if the official diagnosis is something else, presumably for conformity/acceptance.

I always considered myself very high-functioning (my personal perception of myself), but according to these criteria and general criteria from outcome studies, I only have fair outcome as judged by society's standards. For me, the truth is probably somewhere in between.

[1] 82 (I have scored between 78-85 so I did the one in the middle because I don't know which is the most recent)
[2] I don't remember exactly, but between 38-low 40's
[3] community college
[4] Associate Degree no specific field, just general studies
[5] 3.5 years
[6]N/A
[7] N/A
[8]NO
[9]N/A
[10] Fair
[11] 25+
[12] Diagnosed as a high functioning Autistic at age 5

I look pretty good on paper since I have a master's degree, a job that pays well (at least for awhile) and a few friends (but not good friends). On standaridized tests I do ok to good, but my grades can be good to excellent if I apply myself. I have never required extra time to take exams, but have required tutors in college for certain subjects such as college algebra and chemistry. Visual spatial skills are not my strong point at all, but I do have an excellent memory when I apply myself which is why I make excellent grades usually. I am honest and have a strong dislike for bullies, and those who cheat in life, on exams, etc. I have dated in the past and was married for a few years and then divorced. If I really tried I could maybe date and have a relationship, but I have little motivation for this at the moment.

Since over a full day has gone without any more additional responses to the thread questions, I might as well post some summary stats and my interpretations on those stats:

Out of the responses to the questions posted on this thread so far with Asperger's diagnoses (N=24) and PDD-NOS/Autism diagnoses (N=15), the outcome distribution for each of those groups seem to be different between the two diagnosis groups for Very Good outcome (16.7% and 6.7% respectively), Good outcome (37.5% and 20% respectively), Fair outcome (41.7% and 53.3% respectively), and Restricted outcome (4.2% and 20% respectively).

In terms of independent living as defined by the OP, 29.2% of the 24 adults in the Asperger's group were living independently and 20% of the 15 adults in the PDD-NOS/Autism group were living independently. These two proportions were not different from each other.

Out of the responses to the questions posted on this thread so far with ASD diagnoses (N=39), 38.5% of those 39 people were in higher education. Out of the people that were in higher education, only 26.7% of them were also working to support themselves as much as they could. Also, 41% of those 39 people were employed. Out of the people that were employed, only 25% of them were in higher education to better themselves and/or increase their chances of getting a better job than the ones they currently had. Also, 7 (or 43.8%) of the 16 people who were employed were not underemployed. All in all, 27 (or 69.2%) of the 39 survey respondents were in higher education and/or currently employed.

In terms of interpersonal relationships, 11 (or 28.2%) of the 39 survey respondents had at least 2 friends where 18.2% of those 11 people were also in a steady romantic relationship. Also, 15 (or 38.5%) of the 39 survey respondents were in a steady romantic relationship where 13.3% of those 15 people also had at least 2 friends. All in all, 24 (or 61.5%) of the 39 survey respondents had at least 2 friends and/or were in a steady romantic relationship.

In terms of mean ASQ scores for the different outcome groups (Very Good, Good, Fair, Restricted), the mean ASQ score for the Good outcome group (N=8, Mean = 34.1, SD = 6.9) was less than that for the Fair outcome group (N=17, Mean = 39.7, SD = 4.4). No other differences in mean ASQ scores between the 2 outcome groups were detected.

Also, the mean ASQ score for the Asperger's group (N=20. Mean=38.2, SD=4.4) was not different from that for the PDD-NOS/Autism group (N=13, Mean=36.5, SD=6.7).


Now for the interpretations of the above results based on the 39 survey respondents to the thread questions posted at the OP:

It seems to be that people in the Asperger's group had a better mean outcome (Good) than that for the PDD-NOS/Autism group (Fair). But that is to be expected given that people in the Asperger's group were usually more high-functioning to start with than those in the PDD-NOS/Autism group.

So, on average, based on the 39 respondents, an adult with an ASD (to be specific, a mild form of an ASD) will not be living 100% independently.

In addition, on average, based on the 39 respondents, an adult with an ASD (to be specific, a mild form of an ASD) will either be in higher education and/or be in employment. If that adult with an ASD is employed, then, on average, that adult will be underemployed. But this result was expected.

Also, on average, based on the 39 respondents, an adult with an ASD (to be specific, a mild form of an ASD) will either have at least 2 friends and/or be in a steady romantic relationship. But not both.

So it seems that people with a better outcome (Good) tend to have a lower number of autistic traits than those with a not-as-good outcome (Fair). But this was to be expected.

Regardless of the ASD diagnosis sub-groups that people were classified into (Asperger's, PDD-NOS/Autism), the mean ASQ scores for those groups were not affected.

Last edited by chssmstrjk on 02 Jan 2013, 3:09 pm, edited 1 time in total.

[1] Average (a mean of 100).
[2] 41
[3] Bachelor degree
[4] Bachelor degree in social science
[5] 3 years at university.
[6] Not employed, working on my master degree in educational science.
[7] Live semi-independently.
[8] No.
[9] I do not believe in romantic relationship.
[10] Good.
[11] 25+
[12] Professional Diagnosed with Asperger syndrome.

Assumptions made:

1. IQ = Gifted ==> IQ >= 130
2. IQ (Employment) = Highest of all n candidates ==> IQ is in top (100/n)% ==> P(IQ) = (n-1)/n ==> Z = Z(IQ) that makes P(IQ) = (n-1)/n ==> IQ = 100 + (15*Z)

More summary stats and their interpretations:

The average FSIQ for the Asperger's group (N=17, Mean = 130.4, SD=14.6) was not different from that for the PDD-NOS/Autism group (N=9, Mean = 119.9, SD = 20.2). But it was expected that the average FSIQ for the Asperger's group be higher than that in the PDD-NOS/Autism group.

The average FSIQ for the ASQ <= 36 group (N=10, Mean = 129, SD = 5.1) was not different from that for the ASQ > 36 group (N = 15, Mean = 128.8, SD = 20.5).

The average FSIQ for the Good or better outcome group in the ASD adult population (N = 12, Mean = 128.5, SD = 14.1) was not different from that for the Fair or worse outcome group in the ASD adult population (N = 12, Mean = 125, SD = 20.1). But it was expected that the average FSIQ for the Good or better outcome group be higher than that in the Fair or worse outcome group given that people with Good or better outcome tend to have high-enough intelligence to compensate for their weaknesses that are due to their ASD.

How does this compensation work, exactly? How do you work around cognitive deficits when the cognitive abilities you would use to compensate are in fact the abilities that are impaired?

Many who are labeled as both low-functioning and intellectually disabled are not actually intellectually disabled. It seems that severity of symptoms plays a larger role and intelligence plays less of a role than it seems people want to think they do.

This article says that intelligence can't compensate:

Correction, for 5 it should be 2 years on mine. I counted all of college.

Can you give specifics of which cognitive deficits you are talking about, and how compensation fails?

I know that my ability to compensate for social cognitive deficits is low. I could learn all kinds of social rules and non-verbal cues and states of mind, but I can't apply much knowledge in social interactions due to failing to remember to analyze like this and also I don't think that I can analyze all this and keep talking or listening about a topic at the same time. That's just too much work for my brain to handle.

In non-social areas, I am very high-functioning without having the mildest cognitive traits. For eggsample, I see the world from the bottom-up in lots of detail like many autistic people, but I also have a high perceptual load and processing speed that lets me perceive and understand all the details all at once, so these abilities sometimes compensate for problems caused by details. The compensation is not complete, because I often get sensory overloaded by details. But I can also hit a high peak of functioning to be able to do something in the short-term, like drive on the freeway from one location to another.

In the sensory area, I am also hypersensitive to lots of things, like most lights that other people consider dim. I don't have a cognitive trait to compensate for this, so I have to wear a baseball cap when I leave my home or keep lights dim at home.

I have just read a book from Tito Rajarshi Mukhopadhyay (How Can I Talk If My Lips Don't Move?: Inside My Autistic Mind), who is severly autistic, but his IQ got measured with 185.
One part he wrote age 8, one part age 11.
He first learned to show letters on a chart to communicate, later he learned to write as his mother tied a pen to his hand and guided his hand.
He learned a kind of speaking (it is not very clearly pronounced, but I do not know how it has further developed), because his mother did slap him on his back in order to make him do an unvoluntary noise and so he cold locate where his voice was.
For every action he needed people he knew very well, like his mother or later therapists, to give an initiation of the action in order to feel the action and finally learn a certain movement or action.
Now I truly understand executive dysfunction and the degrees of it.
I am much higher functioning than he is, but still I need to go to a daycare center for autistic adults, because my executive dysfunction is severe, but not as severe as his.
IQ is not a measure of funcioning.
Of course a mental disability is another factor.
But autism in itself can be strong enough (and comorbidities) to make a person even with a normal, high or genius IQ having severe difficulties in functioning.
Maybe a person with a high(er) IQ and less being able to function is more severely impaired from her autism then a person with lower IQ , but having a kind of same level of functioning.

Last edited by Eloa on 02 Jan 2013, 6:50 pm, edited 1 time in total.

25, diagnosed AS - I put very good as I have just finished uni and have a full time job starting soon and although I am technically living with my parents for the next 3 days - it's only while I was waiting for my new lease to be finalised. I am also in a steady romantic relationship and would say I had at least one close friend.

[1] IQ score - 139
[2] Autism Spectrum Quotient Test score - 31 (took it again very quickly as I didn't have this on hand)
[3] Highest level of education achieved - two Bachelors degrees
[4] Degree achieved and in what field - one in psychology one in linguistics
[5] How long did it take you to achieve your highest degree? - including a two year break for other reasons 6 years
[6] If employed, are you employed up to your potential? - Yes, I have an employment contract for a competitive graduate job starting in a couple of weeks
[7] If living independently, at what age did you move out and start living on your own? - 19
[8] If you never have been in a romantic relationship, are you interested in getting into one? - N/A
[9] If you have ever been in a romantic relationship, how old were you when you first got into one? 15

This is the same example I gave my therapist about not being able to compensate. I can't compensate for social and communication difficulties because I am unaware of them when they're happening. I don't feel any difference between perceiving an implied message or taking something literally until it's somehow highlighted. I can learn all I want about my social and communication impairments, but I can't really compensate for them when I am in a social situation where I have to communicate.

This is the first thing that usually comes to mind when I see people saying that intelligence provides compensation.



These sorts of things are impaired by ADHD, for me. I can't easily work around ADHD, and while I have some compensations, they're things I've learned from others.



Yes, I think this one can only be compensated for by managing the environment.



I do think my autism is more severe than many on this forum, although not what I would call "severe" from an objective standpoint. I do have a genius measured IQ, and I am impaired in so many areas of life it's frustrating just to contemplate them all. I do think that severity has something to do with the ability to compensate - I think people with milder symptoms of any IQ level can probably compensate more easily, and that intelligence itself does not mitigate severity.

Tito, for example, is not unique in learning how to communicate. Another example is Carly Fleischmann.

My life is full of eggsamples of cognitive strengths helping me function in non-social areas. I gave one eggsample of specific cognitive strength mitigating problems caused by autistic perception, but there are many more. What happens a lot is that I really suck at something when I first try it, but then I try it again doing it in different ways, and one of these ways ends up working and being the one true way for me. My first chemistry lab class was a total disaster, and I had to drop it, but I ended up majoring in chemistry and doing verry merry berry well in all other chemistry labs when I trial and errored my way to my way.

I wasn't trying to say it was completely impossible, just that higher intelligence doesn't mean one's problems are going to be mitigated to the point of effectively being significantly milder because of intelligence.

Areas that I find it very difficult to compensate for involve self-care and adaptive functioning, for example. I didn't really get hygiene until my late teens and in some ways early 20s. I would say I am still imperfect now, but it's more an issue of finding it difficult to maintain certain habits (like getting my hair trimmed regularly) than it is a matter of understanding. Aside from that, if I were left to my own devices, I probably wouldn't quite starve to death, but I think I would be in much worse shape than I am now. I am terrible about remembering to do all the things I need to do to take care of myself, to the point that I have automated reminders to tell me to find out about dinner so I either know that someone else will make it or that I need to make something myself - just for one example.

I can learn new things fairly quickly, as long as I start from the bottom up. Like you, I work best from details but details overload can make things difficult.

Sensory overload is a really big problem for me, and being in school or at work tends to cause higher levels of overload that make it difficult to function in those environments. Intelligence doesn't seem to grant me sufficient capacity to work through this or ignore it, and I end up shutting down frequently, and ultimately dropping out of college or losing my jobs. When I can function in classrooms, I tend to do fairly well as long as the subject is interesting to me and something I can comprehend. I've taken classes in fund accounting twice. The first time I was not severely overloaded and got an A. The second time I was severely overloaded and couldn't understand the most basic principles necessary to understand fund accounting. My intelligence didn't help in that case.