People with milder forms of autism struggle as adults

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Verdandi
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29 Mar 2012, 8:23 am

https://sfari.org/news-and-opinion/news ... -as-adults

Quote:
Contrary to popular assumption, people diagnosed with so-called mild forms of autism don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a new study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according to a Norwegian study published online in June in the Journal of Autism and Developmental Disorders1.

Early intervention has the potential to alter this trajectory, say experts. But until today’s children with autism reach maturity, it will be hard to say how much behavioral intervention at a young age can alter the course of their lives.

“The implication of our findings is that the consequences of having an autism spectrum disorder with profound difficulties in communication skills and social impairment can’t be compensated for by either high intellectual level or normal language function,” says lead investigator Anne Myhre, associate professor of mental health and addiction at the University of Oslo in Norway.

These findings provide support for the proposed merging of pervasive developmental disorder into the autism spectrum in the DSM-5, the edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) set to be published in 2013, the researchers say.

The new edition of the manual takes a spectrum approach, absorbing the separate categories of childhood disintegrative disorder, Asperger syndrome and PDD-NOS into the broad category of autism spectrum disorder. The draft guidelines note that symptoms must appear in early childhood and affect everyday functioning.

“I’m glad that the authors see this as support for the DSM-5 proposed definitions,” says Sally Rogers, professor of psychiatry and behavioral sciences at the University of California, Davis’ MIND Institute. Rogers is a member of the neurodevelopmental working group revising the diagnostic criteria for autism.


There's more to the article at the link.

The bolded part stood out to me, as I have frequently encountered (and do not believe) the claim that being more intelligent necessarily means one can mitigate or work around autistic impairments. I think the article may put more emphasis on the social deficits than other difficulties relevant to autism, but the overall conclusion strikes me as accurate.

Throwing this bit in as well:

Quote:
Limited opportunities:

Relatively few long-term studies report on individuals with PDD-NOS but, in general, research on social and employment prospects for people on the autism spectrum are not encouraging.

For example, a study published earlier this year found that in the U.S., young adults on the spectrum who do not have an intellectual disability are in some ways worse off than those who do, as there are fewer programs to support their needs. They are at least three times more likely to have no structured daytime activities, for example4. Another study by some of the same researchers showed that 70 adults with Down syndrome enjoy higher levels of independence, more social opportunities and receive more services compared with 70 adults who have autism5.

This picture of limited opportunity for social engagement and growing isolation in adulthood for those on the spectrum is replicated by a study in April, which showed that more than half of young adults with autism had not gotten together with friends in the previous year6. Another study in February found that close to 40 percent of young adults with autism in the U.S. receive no services whatsoever after high school graduation.



Joe90
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29 Mar 2012, 8:38 am

I couldn't quite get the whole of the article, but I understand the basic point, and I agree with the fact that adults with milder cases of Autism and AS struggle more so than those with a more severe case. I have mild AS, and I'm struggling as a young adult. I am on jobseekers but I am struggling with it because they are pushing all these jobs on to me what don't suit me, and I just think they aren't giving enough support that coincides with my needs personally. Too many people are unemployed these days, and so they just haven't got the time and the patience for people like me. However, there is a special job centre somewhere exclusively for people with disabilities (where they can get special support that will suit their needs and a better understanding of their condition), and I've tried getting in there, the social worker has been trying to get me in there, I have got referred by my doctor a few times, but they won't let me in because I'm not disabled enough, apparently. I have average IQ, and I am not disabled.

Yet I am too ''disabled'' to take part in normal society alone. No employers will take me on, and because my disability is invisible, they will soon find out there is something not right about me but will just assume straight away that it's me intentionally not doing my work properly and go and give me the sack before I have a chance to explain that I have this disorder what makes me do stupid things that I'm unaware of and can't seem to work on no matter how hard I try. I am good at covering my AS up and hiding it and coming across as NT to others, but my oddities are invisible, so when I do say or do something that's considered unusual to other people, it's rather difficult to explain what I actually do or say that is so unusual, yet it's there, if you know what I mean. That's where it's difficult.


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arko5
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29 Mar 2012, 9:23 am

If you're using crutches people don't expect you to run, they'll hold doors open for you and treat you with respect. The same consideration should be given to those with invisible disabilities. When I was unemployed I had to do weekly one-to-one interviews where I was matched up to possible jobs, and I couldn't explain why I'd find store jobs or telephone jobs unbearable (I didn't have the diagnosis at that point, just suspected) so I just had to mutter some vague agreements when they suggested applying. A week later and I'd be interrogated as to why I hadn't applied (I think they thought I was just being lazy or cheating the system).

Thankfully I'm at university again now so I don't have to deal with that (yet), but I'm dreading graduation when I'll have to face the employment market. Anxiety about change/new situations makes it hard enough to apply for jobs but with the current jobs market I just feel that I stand no chance compared to the thousands of others who don't have social difficulties. Even now I'm noticing people building up contacts and getting work experience in my course, they're not necessarily the best in the subject but they're 'proactive' (I hate that word) and approach the lecturers whereas I'm not even comfortable approaching my supervisor if there's something I need to discuss. Through school I always thought 'good grades = good prospects', but it seems more and more that the world is built on social foundations and I'm not sure I can deal with that.

/rant over :D


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29 Mar 2012, 9:23 am

Yes. Teens too.


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29 Mar 2012, 9:30 am

I totally agree with this article. Thanks for posting, Verdandi. Having a hidden disability is definitely a double-edged sword. I mean, I have accomplished many things that I only could have accomplished had I not had a severe disability (such as graduating college), but I do think that hidden disabilities are often harder. With obvious disabilities, people know that something is wrong with you, and they often can tell exactly what is wrong with you. With hidden disabilities, we look "normal," so when we struggle, it seems like we're inept, lazy, and/or making excuses.

For example, I have to ride the bus to work, because my AS makes me unable to drive. If there isn't a seat on the bus, neurotypicals (and myself, of course) stand up for blind, handicapped, and pregnant passengers, but they'd never think to give me a seat. I have terrible balance and coordination, and people have to notice how much I stumble and tip over while standing on the bus, but I don't look disabled, so I'm never given a seat for special needs individuals. That's the kind of thing that bugs me. It's advantageous to fly under the disability radar in many situations, but it angers me how so few know just HOW much I struggle with daily life...


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29 Mar 2012, 9:45 am

I think a lot of these different viewpoints come from how one defines "to work around impairments".

I can't make myself explain visual thoughts spontaneously but because I can talk/write and have awareness of that my actions can make a difference in what other people do, say and think, I hope I'll be able to better manage my impairment.

That's how I define working around autistic impairments now.

A child that is often able to point at a picture card when he or she wants a certain snack has worked around their autistic impairment in that regard by my definition.

When I can't get the answer right to whether I'd like a glass of orange juice or not or whether I am hungry, I often manage to get myself a glass of orange juice or get myself a snack in-time. Mission accomplished.

Again, the basic autistic impairment remains completely unchanged.

High IQ on standardised tests as well as okay to good language abilities can't possibly make these impairments disappear (of course, someone else is welcome to insist that it is possible if they think so, hard to generalise when it's not certain that everyone with "autism" has the same underlying cause/disorder).

"Working around it" means different things to some others, I guess. At the end of last week, when I talked about something (language) that gave me trouble, others reacted by claiming that I should learn to be fine with it because my autism can't be cured. At first, I didn't comprehend why they wouldn't help me think of a way to deal with certain situations in which I struggle!

In my language "I won't stop until I found a way to work this this" has nothing to do with the sentence "I demand that my impairment disappears".

Even a goal such as "I will try to change the behavioural expression (the autistic symptom) of the underlying autistic impairment" isn't the same as making the deficit itself milder or making it disappear entirely.


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ooOoOoOAnaOoOoOoo
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29 Mar 2012, 9:45 am

Yep, they do. Probably more than people realize.



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29 Mar 2012, 9:51 am

I guess more often than not people make the mistake of assuming that 'high functioning' people with good language skills and intelligence don't need help. It's so sad. So it's not enough that in the past there was no help available for people like me at all, they have to bear with the fact that life is cruel with them even today. Personally I don't see why am I supposed to live further.

As for children, I see parents being in ignorance about their child's needs. At least when I grew up there was less push on people, socialism had it's benefits after all. But now? You are supposed to perform to your best the moment you step out of your alma mater into life.


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29 Mar 2012, 9:55 am

"They are at least three times more likely to have no structured daytime activities, for example"
Maybe because that's how we roll



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29 Mar 2012, 10:37 am

what about all those highly successful aspie types on wall street and silicon valley/microsoft meadow? how do THEY do it? i read someplace that children who had hellish childhoods but grew up to be successful adults had one thing in common- tested IQs above 140. presumably these were NT individuals, and i don't know much more IQ brain horsepower an autist would need to compare to this, but just for the sake of a thought experiment let's put it at some level higher than 140. maybe they should've done a study just comparing those super IQ autists with a control group of NTs. just a thought.



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29 Mar 2012, 10:56 am

auntblabby wrote:
what about all those highly successful aspie types on wall street and silicon valley/microsoft meadow? how do THEY do it? i read someplace that children who had hellish childhoods but grew up to be successful adults had one thing in common- tested IQs above 140. presumably these were NT individuals, and i don't know much more IQ brain horsepower an autist would need to compare to this, but just for the sake of a thought experiment let's put it at some level higher than 140. maybe they should've done a study just comparing those super IQ autists with a control group of NTs. just a thought.


I have one of those super IQs. Not doing me much good.

Karla Fisher has one as well, and she's been fairly successful with a lot of effort. I think one difference between us (based on what she's said) is that she has fewer executive function problems than I do. I suspect that opportunity has also played a role, but I can't prove anything there.

Also, I think the article I linked covers it. High intellectual level or language skills doesn't mean you're going to do better. Some people do end up having careers and otherwise functioning well, but that kind of statistical spread is normal. I doubt it's directly linked to having a high measured IQ.



Last edited by Verdandi on 29 Mar 2012, 11:00 am, edited 1 time in total.

Verdandi
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29 Mar 2012, 10:57 am

Sora wrote:
I think a lot of these different viewpoints come from how one defines "to work around impairments".


In short, make them less impairing, easier to deal with, effectively make them go away.



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29 Mar 2012, 11:01 am

Verdandi wrote:
auntblabby wrote:
what about all those highly successful aspie types on wall street and silicon valley/microsoft meadow? how do THEY do it? i read someplace that children who had hellish childhoods but grew up to be successful adults had one thing in common- tested IQs above 140. presumably these were NT individuals, and i don't know much more IQ brain horsepower an autist would need to compare to this, but just for the sake of a thought experiment let's put it at some level higher than 140. maybe they should've done a study just comparing those super IQ autists with a control group of NTs. just a thought.


I have one of those super IQs. Not doing me much good.

Karla Fisher has one as well, and she's been fairly successful with a lot of effort. I think one difference between us (based on what she's said) is that she has fewer executive function problems than I do. I suspect that opportunity has also played a role, but I can't prove anything there.


I don't know how high my IQ is exactly but I know its at least a little above average based on various things like learning to read and comprehend when I was 5 by myself......graduating highschool even though I slacked on some of the assignments, people I know tell me I'm very intelligent(sometimes I don't understand why they would think that, but its what people say. Yet that hasn't seemed to help me any, not to mention it gives me even more of an ability to over-analize and dwell on things that make me feel bad...or are just generally depressing such as the state of society.


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29 Mar 2012, 11:20 am

I also have mild AS and although I seem to be coping better than both what I and the doctors that diagnosed me think I do find it hard to cope with just general things in life.


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29 Mar 2012, 11:47 am

I don't know if this is true for other people, but I've found that the more self-awareness I've developed, the more anxious I've become. I'm never locked in my own world - I am just as able as any person to take notice of other people and the things around me, and so being aware of what I'm missing or likely to come into difficulties with is what causes more anxiety for me.

Also I've found that being self-aware causes social phobia for me because I worry too much about how I appear to other people, now that I know people are so sharp on noticing body language. So I am now being so careful to not break any social rules that I end up not talking at all. That way I can't make any verbal errors, and can only concentrate on my body language.


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29 Mar 2012, 12:15 pm

I became more anxious after I befriended someone who pointed out the meanings of all the things people were doing. It made me so self conscious. I'd rather not know.