Are most Aspies unable to work or live independently?

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Blindspot149
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11 Mar 2010, 2:44 am

I often read posts on WP stating that most (50% or more) of those with AS don't work and either live at home or are institutionalized.

I have no idea if this is true.

It would be helpful to see the real figures and the basis for sample selection.

I'd like to see the research that supports this claim.

Where can I find it?


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Callista
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11 Mar 2010, 3:33 am

Unfortunately, probably nowhere yet. AS is too new to have accumulated a lot of outcome data.

The children diagnosed at age 10 in 1994 are now in their mid-twenties. That is the very oldest group that could be properly said to have been diagnosed and treated in childhood--and the age of 25 or 26 is too young to tell whether they will be independent, working adults. It wouldn't be too much of a problem if they were NT; but it is very common for people with developmental disabilities like Asperger's to move out and find work late.

A more realistic group--people who were diagnosed at age five in 2000, and so would have the benefit of education in a system where autism is well known and kids with AS routinely have IEPs--are still in high school.

The older groups--diagnosed autistic or Asperger's before 1994--are generally made up of people with more obvious, easy-to-diagnose cases. With autism being less well known then, this group is not the same as the current group of AS people.


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Blindspot149
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11 Mar 2010, 3:42 am

Callista wrote:
Unfortunately, probably nowhere yet. AS is too new to have accumulated a lot of outcome data.

The children diagnosed at age 10 in 1994 are now in their mid-twenties. That is the very oldest group that could be properly said to have been diagnosed and treated in childhood--and the age of 25 or 26 is too young to tell whether they will be independent, working adults. It wouldn't be too much of a problem if they were NT; but it is very common for people with developmental disabilities like Asperger's to move out and find work late.

A more realistic group--people who were diagnosed at age five in 2000, and so would have the benefit of education in a system where autism is well known and kids with AS routinely have IEPs--are still in high school.

The older groups--diagnosed autistic or Asperger's before 1994--are generally made up of people with more obvious, easy-to-diagnose cases. With autism being less well known then, this group is not the same as the current group of AS people.


Why didn't you mention people diagnosed with AS as adults :?:


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11 Mar 2010, 4:00 am

I live independent of my family geographically, but am still financially tied. That should change sometime soon. I plan on purchasing a few grand worth of agricultural commodities in the near future, and this should turn into a small fortune within the next couple of years. Then I'll take 10% or so out, reinvest the rest in whatever is being overlooked for the year, and be economically independent from that point on. At least that's the current plan.

As for a 9-5 job. I could never, ever, ever pull this off. I'm too damned incapable of dealing with people on a regular basis, and the sensory overload I get after being outside for more than a few hours is just too much to bear. If trading doesn't work out, I've still got several ideas on the back burner waiting to be tackled, so I should still be eco-independent within a couple of years.

I've simply taken a lot longer than my peers to grow up. I had to analyze everything to the Nth degree. It was as if I had a second childhood at age 17. Where most people went off and started their meaningless jobs, I took a decade to stop, observe, and analyze. I'm about done building a fairly stable worldview and understanding myself as I am. It's time to move on and create...


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Callista
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11 Mar 2010, 6:42 am

Blindspot149 wrote:
Why didn't you mention people diagnosed with AS as adults :?:
There haven't been any big outcome studies on them either. It wouldn't have much application to current practice if there were, because there won't be another generation diagnosed as adults, and the past generation already has whatever outcome we're going to have. This demographic is also not representative of all Asperger's individuals, because a large subgroup, if diagnosed as children, would have lost the diagnosis (because of natural learning and development; when there is no more impairment there can be no diagnosis) before or sometime during adulthood, and never need a diagnosis. So, people being diagnosed as adults today would have either the more severe or the more persistent cases. Their outcomes are completely unrelated to what happens to a group of people diagnosed in childhood, who had access to therapy in childhood.


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11 Mar 2010, 6:57 am

"Results: Although a minority of adults had achieved relatively high levels of independence, most remained very dependent on their families or other support services. Few lived alone, had close friends, or permanent employment."
Adult outcome for children with autism
Patricia Howlin, Susan Goode, Jane Hutton and Michael Rutter
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0

"Efficacy rates for No Intervention, the cohort that received no IBI, were based on published literature (Freeman 1997; Howlin et al. 2004; Green et al. 2002). It was assumed that 25% attain normal functioning, 25% are semi-dependent and 50% are very dependent without receiving IBI (Freeman 1997). The figures from Freeman (1997) are the most optimistic reported in the literature; they match closely more recent estimates of adult functioning by Howlin et al. (2004), which are slightly lower. Although many studies report even lower rates of normalization (Rutter 1996; Howlin 1997), we selected the highest published rates to investigate the cost-effectiveness of IBI from a best-case scenario, thereby increasing the robustness of our model."
The Cost-Effectiveness of Expanding Intensive Behavioural Intervention to All Autistic Children in Ontario
Sanober S Motiwala, MSC, Shamali Gupta, MSC, Meredith B Lilly, HON BA, Wendy J Ungar, PHD, and Peter C Coyte, PHD
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

You could see if any other papers reference these two, and follow up the references in them at http://www.ncbi.nlm.nih.gov/sites/entrez



Blindspot149
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11 Mar 2010, 7:02 am

Callista wrote:
Blindspot149 wrote:
Why didn't you mention people diagnosed with AS as adults :?:
There haven't been any big outcome studies on them either. It wouldn't have much application to current practice if there were, because there won't be another generation diagnosed as adults, and the past generation already has whatever outcome we're going to have. This demographic is also not representative of all Asperger's individuals, because a large subgroup, if diagnosed as children, would have lost the diagnosis (because of natural learning and development; when there is no more impairment there can be no diagnosis) before or sometime during adulthood, and never need a diagnosis. So, people being diagnosed as adults today would have either the more severe or the more persistent cases. Their outcomes are completely unrelated to what happens to a group of people diagnosed in childhood, who had access to therapy in childhood.


Thanks for the contribution Callista. I still love your name and avatar :D

Studies? People who were diagnosed with AS as adults either have a job or they don't :?

However, this is actually getting away from the main purpose of the thread which was;

To validate claims that people with AS are largely unemployable and incapable of living independently, OR to conclude that there is no scientific basis for making such a claim.

This is a very serious claim/charge to make about the AS community and I would have thought that there would be a genuine interest in learning the TRUTH about this.

I may be wrong about the general interest in establishing the facts of this issue.


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11 Mar 2010, 7:08 am

I don't work, and I'm still not entirely financially independant either (my parents keep having to help me out, at my age I feel absolutely awful about it)

I WANT to work, I've been applying for jobs for 4 years now and I've not had a single interview, but I have a patchy work history, I don't have a reference from my last job, and with the current climate making it difficult for anyone to find work, I'm kind of stuck in limbo.....

But yes, I think I'd feel I had some value if I actually worked, my partner has MS and really is struggling with her job due to ill health, I feel utterly retched because I should be the one working, and she should be the one taking it easy and looking after herself....as it is she works, and puts up with MS, and then helps me out (I know I could probably cope on my own, but at the same time I would lapse worse into certain bad habits, like eating the same thing over and over, or doing the things I need to do) I love her so much but this situation is terrible.....especially for her...sometimes I think I will wake up and she will have gone, and you know what, I wouldn't blame her for leaving, even if it would end me. :(

I KNOW I can work, give me a job catalouging a collection, working in nature, anything as long as it's not people-intensive, but sitting about day after day (apart from being a housewife) is slowly making me feel more and more low.



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11 Mar 2010, 7:10 am

I work and do so with pride
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Blindspot149
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11 Mar 2010, 7:14 am

StuartN wrote:
"Results: Although a minority of adults had achieved relatively high levels of independence, most remained very dependent on their families or other support services. Few lived alone, had close friends, or permanent employment."
Adult outcome for children with autism
Patricia Howlin, Susan Goode, Jane Hutton and Michael Rutter
http://www3.interscience.wiley.com/jour ... 1&SRETRY=0

"Efficacy rates for No Intervention, the cohort that received no IBI, were based on published literature (Freeman 1997; Howlin et al. 2004; Green et al. 2002). It was assumed that 25% attain normal functioning, 25% are semi-dependent and 50% are very dependent without receiving IBI (Freeman 1997). The figures from Freeman (1997) are the most optimistic reported in the literature; they match closely more recent estimates of adult functioning by Howlin et al. (2004), which are slightly lower. Although many studies report even lower rates of normalization (Rutter 1996; Howlin 1997), we selected the highest published rates to investigate the cost-effectiveness of IBI from a best-case scenario, thereby increasing the robustness of our model."
The Cost-Effectiveness of Expanding Intensive Behavioural Intervention to All Autistic Children in Ontario
Sanober S Motiwala, MSC, Shamali Gupta, MSC, Meredith B Lilly, HON BA, Wendy J Ungar, PHD, and Peter C Coyte, PHD
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

You could see if any other papers reference these two, and follow up the references in them at http://www.ncbi.nlm.nih.gov/sites/entrez


Thank you Stuart.

Finally some actually research on the subject. :idea:


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11 Mar 2010, 7:21 am

Some aspies are able to work full time. But living independently is more than that. Some will have grooming or self care issues.

I'm finding that I am less capable than I thought. I seem to struggle to do the paperwork needed to be independent. Things like taxes and whatnot. I've been working on my AISH (Assured Income for the Severely Handicapped) for over a month, after putting it off for years. Ironically its hard to think of myself as qualifying for that, but the fact that I am struggling to finish it(for no great reason) kinda proves the point.


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DavidM
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11 Mar 2010, 7:46 am

I have traditionally been totally incompetent and only able to live 'independently' (i.e. in the city in total isolation from family and other people) because of some good luck money-wise.



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11 Mar 2010, 8:00 am

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Blindspot149
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11 Mar 2010, 8:30 am

Thanks to everyone for sharing your story about work and living independently.

So far we only have one contributor directing us to some actual research (Thanks Stuart).

More research sources would be more helpful.


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pensieve
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11 Mar 2010, 8:33 am

I work but I still live with my mum. I can't see the situation changing. It took me seven years to get employed, and I was starting to enjoy being unemployed when suddenly I get a call from disability services about an interview with a wedding photographer.
Kidding actually I was feeling a bit down about not getting a job. I never thought it would happen so I am grateful.


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Blindspot149
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11 Mar 2010, 8:39 am

pensieve wrote:
I work but I still live with my mum. I can't see the situation changing. It took me seven years to get employed, and I was starting to enjoy being unemployed when suddenly I get a call from disability services about an interview with a wedding photographer.
Kidding actually I was feeling a bit down about not getting a job. I never thought it would happen so I am grateful.


I remember you were going for that job interview.

Didn't know you got the job. Well done :!:


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