People with milder forms of autism struggle as adults

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Verdandi
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30 Mar 2012, 1:26 pm

EXPECIALLY wrote:
May, may not. Who knows, nobody here does but to treat the statistics as though they compare people who share the exact same experience is flawed.


No one is doing that.



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30 Mar 2012, 1:27 pm

auntblabby wrote:
anybody wanna go to the island of unwanted but lovable toy humans with me?Image


Yeah. Can I bring candy?


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fraac
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30 Mar 2012, 1:32 pm

"Undiagnosed adults still include people with problems."

Yes! But fewer of them. All autistic children get diagnosed. If only or even just mostly 'unsuccessful' adults get diagnosed, the remainder will be more successful - but we have no idea to what amount. If ALL unsuccessful autistic adults have already been diagnosed, the remainder are very successful indeed. The actual proportion of diagnosed unsuccessful autistics is unknown. If autistics are 1/88 of all people, and we know how many adults have been diagnosed, we can see approximately how many left we have to ask about success.

If there is a problem with this, please point it out.



Last edited by fraac on 30 Mar 2012, 1:35 pm, edited 1 time in total.

Tuttle
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30 Mar 2012, 1:32 pm

fraac wrote:
The difference between clinical and subclinical in the undiagnosed population would appear to be largely situational. The subclinical ones are 'getting away with it', perhaps due to random chance.


Clinical vs. subclinical is not the same as diagnosed vs. undiagnosed. People who aren't diagnosed, but are significantly impaired are still clinical. It is possible for people to be diagnosed and become subclinical.

The difference is not the diagnosis status, nor the level of "success". The difference is the level of impairment. (And there are people who are solidly impaired and solidly successful, both diagnosed and undiagnosed. That group is one I'd consider clinical.)

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"What they're saying is that statistically, the rates of unemployment of autistic people are unlikely to change drastically when you include undiagnosed adults"

I can't understand why anyone would assert this without evidence. We know that adults get diagnosed when they're having problems. The undiagnosed ones would seem therefore to be more successful.


The most useful numbers I've found are old, but in 2001, there were 58789194 people in the UK, 13354297 of which were children. This means there were 45434897 adults.

At least one study showed that 1/100 adults meet the diagnostic criteria for an ASD (not that they are diagnosed. These are primarily adults who grew up before Asperger's was a common diagnosis. The same rate as the current children diagnosis rate was shown. They were looking to see whether its getting more common or the diagnostic changes are causing the increased rates).

That means there are about 454348 autistic adults in the UK. Not all of whom are diagnosed based off of the best data I can find.

If we assume that the undiagnosed autistic adults have the same rate of employment as the rest of the population (which is an extremely flawed assumption, but its fair for looking at the data), then even if only half of the autistic adults are diagnosed, then there is still under a 50% employment rate for autistic adults. If 50% of the (randomly chosen theoretical 50% of) autistic adults which are undiagnosed have a job, the employment rate is down to 30% of all autistic adults.

However, that's not really where this comes from anyways. What it comes from is that the number of diagnosed autistic people is a large enough population to have statistically significant results when they're that drastic. There is a statistically significant result about autistic people, even "high functioning" ones, having jobs less often.



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30 Mar 2012, 1:39 pm

EXPECIALLY wrote:
You can't apply the same statistics. to the undiagnosed adults who grew up when the diagnosis didn't exist.


Which ones? The 12% employment rate is of diagnosed adults, including those who grew up when the diagnosis didn't exist.

The 1/100 comes from a study looking at the rate of autism in adults in Britain. (http://www.time.com/time/health/article ... 15,00.html). It said that there was not a significantly different rate whether they were looking at people in their 20s, 30s, 40s, even 70s. The number they found was about 1/100 in all cases, which was the same rate of diagnosis in children. That wasn't me estimating because of that being the diagnosis rate in children. I was specifically looking at rates of autism in adults.


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The criteria for clinical and subclinical levels don't change but the way in which people who receive a diagnosis adapt may be different, if you consider the people who have adapted to be subclincal autistics at that point it's perfectly acceptable but that leaves the possibility that current diagnosed Aspies may have the same potential to grow up to be subclinical autistics and there's no reason to think that having a label that includes statistics of high failure rates hanging over their heads as they grow up may not affect that.

May, may not. Who knows, nobody here does but to treat the statistics as though they compare people who share the exact same experience is flawed.


People certainly act differently with a diagnosis or without a diagnosis. However, people also act differently depending on their environment and the environment has changed drastically in the last 50 years as well. Autistic people now will not be identical to autistic people in the past. That doesn't change that

a) the "functioning level" descriptors of autism often don't have much to do with someone's potential for "success".

b) The current diagnosed autistic adults, including those who didn't grow up with a diagnosis and those who did who are now in their 20s and 30s, is having this pattern show up.

Will it be different later? Possibly. However, whether someone was diagnosed as a child or as an adult, they often still have impairments that affect their employability.



fraac
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30 Mar 2012, 1:48 pm

"a) the "functioning level" descriptors of autism often don't have much to do with someone's potential for "success"."

True, but to say there is no correlation would require data that we don't have. Specifically, the success of the undiagnosed adult autistics. I would be amazed if adult autism diagnosis is anything like the child figure of around 1/100.



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30 Mar 2012, 1:54 pm

fraac wrote:
"Undiagnosed adults still include people with problems."

Yes! But fewer of them.


Not necessarily. The undiagnosed adults I know range from the most stereotypical Asperger's I've ever seen, to someone who regularly self injures because of meltdowns, to someone who was unable to graduate college because of his impairments. (Yes, these are young adults, but they're still adults who are at commonly employable ages, who don't have diagnoses, and who would greatly benefit from the diagnoses).

When it gets to older adults, not those who are early 20s - early 30s, it comes even more down to whether they've gotten a chance to get diagnosed. Someone needs to identify autism before they have a chance to get diagnosed. Like I said before "high functioning" or even ability to blend in with NTs in a doctor's office environment, doesn't actually have much bearing on their level of impairments.

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All autistic children get diagnosed.


Also false. The people I was talking about above primarily range from 22 (my age) through 30. I was 5 when the DSM-IV came out. I still wasn't diagnosed until age 22. Rates of diagnosis are increasing, but its still not to the point where all autistic children get diagnosed.

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If only or even just mostly 'unsuccessful' adults get diagnosed, the remainder will be more successful - but we have no idea to what amount


True, if most of the "unsuccessful" adults get diagnosed, the average success level will be higher among the undiagnosed population. However, you've not given any evidence that only the mostly "unsuccessful" adults get diagnosed.

Quote:
If ALL unsuccessful autistic adults have already been diagnosed, the remainder are very successful indeed.


I don't see the point of this statement other than evoking emotions. Yes, if people who are unsuccessful are removed from a group, the rest of the group is successful. That has no relevance to our conversation.

Quote:
The actual proportion of diagnosed unsuccessful autistics is unknown. If autistics are 1/88 of all people, and we know how many adults have been diagnosed, we can see approximately how many left we have to ask about success.


If someone could find information about the number of diagnosed autistic adults in the UK, that would be highly useful. I've been unable to find it.



fraac
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30 Mar 2012, 1:58 pm

"However, you've not given any evidence that only the mostly "unsuccessful" adults get diagnosed."

I don't need to give evidence. We don't know. That's exactly my point: we cannot extrapolate from the success of diagnosed adult autistics to undiagnosed ones.



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30 Mar 2012, 2:25 pm

All that talk about successful is making my mind try to curl in from annoyance and wonder of what people are thinking.

Successful autistic person?

A socially suave person who enjoys and tolerates the company of most people to an average degree, displays an average amount social reciprocity and who is also flexible. On top of that, this autistic person would be able to get jobs and never be unemployed for too long, certainly not for longer than 12 months (since it's common to have to change jobs every couple of years these days).

Now, a socially eccentric person who is rigid and single-minded and who can't even have a straight conversation but earns a fair nice income (a steady job) and lives in his own chaotic apartment and off junk food is not what I consider successful. Others may disagree with me and that's fine but really, the word "successful" used during discussions can be so empty.


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30 Mar 2012, 2:26 pm

I read this thread, and I am not sure what is being talked about. I thought that the main point of the study was that people with mild autism, specifically PDD-NOS, normal intelligence, and normal language still struggle with having careers and relationships as adults, i.e. still have impairments in functioning as adults. The impairments are caused by both the autistic traits themselves, e.g. I lack the brain functions that NTs have to read people in real-time, and the way in which society deals or does not deal with the traits, e.g. why can't you just read us in real-time, if you are so smart and can speak?



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30 Mar 2012, 2:28 pm

Tuttle wrote:
Quote:
If only or even just mostly 'unsuccessful' adults get diagnosed, the remainder will be more successful - but we have no idea to what amount


True, if most of the "unsuccessful" adults get diagnosed, the average success level will be higher among the undiagnosed population. However, you've not given any evidence that only the mostly "unsuccessful" adults get diagnosed.

Tuttle wrote:
Quote:
The actual proportion of diagnosed unsuccessful autistics is unknown. If autistics are 1/88 of all people, and we know how many adults have been diagnosed, we can see approximately how many left we have to ask about success.


If someone could find information about the number of diagnosed autistic adults in the UK, that would be highly useful. I've been unable to find it.

I don't see the point in diagnosing 'successful' adult autistics. Everyone agrees that adults show less severe symptoms as they mature and learn coping strategies over time. That is, children are seen more impaired for this very reason. There's a smaller chance that they go undetected. ASD is a disorder that impedes development, in other words, inflicts slower maturation on the sufferers.

Some adults with definite impairments (clinically significant for a dx) often don't see the point in getting dx-d. It's unfortunate, but it's often true, and we should take it into account. Adults often don't have the same concerns towards themselves that they have towards their children.



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30 Mar 2012, 2:32 pm

OJani wrote:
Tuttle wrote:
Quote:
If only or even just mostly 'unsuccessful' adults get diagnosed, the remainder will be more successful - but we have no idea to what amount


True, if most of the "unsuccessful" adults get diagnosed, the average success level will be higher among the undiagnosed population. However, you've not given any evidence that only the mostly "unsuccessful" adults get diagnosed.

Tuttle wrote:
Quote:
The actual proportion of diagnosed unsuccessful autistics is unknown. If autistics are 1/88 of all people, and we know how many adults have been diagnosed, we can see approximately how many left we have to ask about success.


If someone could find information about the number of diagnosed autistic adults in the UK, that would be highly useful. I've been unable to find it.

I don't see the point in diagnosing 'successful' adult autistics. Everyone agrees that adults show less severe symptoms as they mature and learn coping strategies over time. That is, children are seen more impaired for this very reason. There's a smaller chance that they go undetected. ASD is a disorder that impedes development, in other words, inflicts slower maturation on the sufferers.

Some adults with definite impairments (clinically significant for a dx) often don't see the point in getting dx-d. It's unfortunate, but it's often true, and we should take it into account. Adults often don't have the same concerns towards themselves that they have towards their children.


I don't know about any other adults here but I don't feel my symptoms have gotten less severe at all....also I never got diagnosed as a child so I think its safe to say I went undetected more or less...though teachers did point out things they found odd about me to my parents. Also, to say autism inflicts slower maturation strikes me as inaccurate, as there is nothing like that in the DSM criteria. We don't develop the 'same' as neurotypicals that is not to say we develop 'slower' also the sensory issues could make a perfectly mature aspie come off as immature......I mean a normal adult doesn't complain about such insignificant sensory input do they?


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30 Mar 2012, 2:38 pm

Sora wrote:
Successful autistic person?

A socially suave person who enjoys and tolerates the company of most people to an average degree, displays an average amount social reciprocity and who is also flexible. On top of that, this autistic person would be able to get jobs and never be unemployed for too long, certainly not for longer than 12 months (since it's common to have to change jobs every couple of years these days).


For a decent amount of time that could have described me, except for not working because I get free money. Socially awesome. I was just really into people. That isn't really important though, as success would surely be subjective. If the autistic feels they're successful we can say they are.

btbnnyr, I agree with the study, I just don't think we can conclude that intelligence can't compensate.



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30 Mar 2012, 2:41 pm

Sweetleaf wrote:
I don't know about any other adults here but I don't feel my symptoms have gotten less severe at all....also I never got diagnosed as a child so I think its safe to say I went undetected more or less...though teachers did point out things they found odd about me to my parents. Also, to say autism inflicts slower maturation strikes me as inaccurate, as there is nothing like that in the DSM criteria. We don't develop the 'same' as neurotypicals that is not to say we develop 'slower' also the sensory issues could make a perfectly mature aspie come off as immature......I mean a normal adult doesn't complain about such insignificant sensory input do they?

See me at age 8 and now and there's a difference. Jump back only 10 years, and there's a difference.

I also went undetected but I would have benefited from some therapy for sure, maybe I wouldn't qualify for a dx now.

Maturation is slower, at least for me and many other people with ASD. Maturation is not knowledge or academics that you learn at school. I mean, my ego is still underdeveloped, and that's not only an illusion.



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30 Mar 2012, 3:21 pm

My therapist and I talked about whether childhood diagnosis would have helped or harmed me as a kid. Neither of us brought up giving into the disorder as a possibility, but we both talked about what the school would have done with me. In grade school, I was treated as special gifted child with communication problems who learned bestest when left to herself. If I had been diagnosed with autism, maybe I would have been considered defective child with splinter skills who should work on simple material below her grade level until she looks people in the face and talks.

My intelligence did not help me figure out that people did not always say what they mean or mean what they say or that what they meant but did not say was understood by them through non-verbal cues. This kind of thinking was so alien to me that I did not think of it eggsisting until I was told eggsplicitly during my diagnostic evaluation.



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30 Mar 2012, 4:01 pm

An early diagnosis would have harmed my education. In elementary school they denied that I was highly intelligent (so I don't think a diagnosis would have changed that for the better) and at age 10, secondary school desperately searched for a reason to get rid of me after they figured in 1998 that they couldn't put a "healthy" child into a special school for the mentally disabled just because they were of the opinion that I was "learning disabled" and "emotionally deranged".

I assume that an early diagnosis wouldn't have harmed me if I had had both parents (because single-parents have always been at fault from 1992-2004) and if my parents had happened to be super rich and socially well-known.

Kids who went to school(s) with me with diagnosed disorders ranging from mysterious developmentally disorders to far more common ADHD and dyslexia and who had well-respected parents whose names were well-known due to politics never had those problems with anyone but the very occasional eccentric old-aged teacher who insisted that they were just being naughty or dumb. Such double-standards.

Nowadays, children with AS who are gifted don't fare much better here. For those who manage to work on a similar academic level as their peers (seeing how autistic behaviours and sensory issues can get into the way of even the most gifted autistic individual), they are lucky indeed if they can escape being schooled on the very same level as children with below average IQs.


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