Mature ASD study and good life outcomes

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I keep my eye out for any reasonably designed study of the midlife/senior adult age groups, given the lack of serious attention and basic respect for this group.

This study is interesting to me:

http://www.ncbi.nlm.nih.gov/pubmed/22086712

The study findings appear to be in stark contrast to the 'doom and gloom' prophesies which are so widely spread. Overall, social, academic, marital and other life outcomes were found here to be positive for a large majority of the sample group. (Pause to smile

The findings are consistent with my own observations of mature-age ASD people whom I personally know, and have known in the past - though this would be a based on a "biased sample" influenced by my own spheres of activity during my adult life. Still.. every little crumb adds up to something larger..

The only adverse finding was the incidence of depression, though that is hardly surprising and this depression may principally arise as a reaction to living in a socio-cultural environment which is not inclusive of ASDs, often hostile to and/or ignorant, actively marginalising and stigmatising.

We simply don't know what the rate of depression would be - or wouldn't be - in a context of ASD acceptance, inclusion, understanding, accurate public education and good will. We don't know if this depression is reactive, endogenous, or both simultaneously. Assumed to be a principal co-morbid, little work seems to have been done on the effect of possible environmental precursors. No-one seems to want to study it, and researchers don't find out anything about topics they don't research: choice greatly influences the state of research knowledge at any time!

Thank you for sharing that!

It's very good to have that information. I imagine this will be of interest both to older adults with HFA/AS type ASD and to parents of children with such diagnoses.

Hope is an incalculable resource. Hope backed by data even more so.

I hope there are more studies like that which will serve to corroborate the results of this one.

Could be a long wait.. because of the political background and commonplace activity now of researchers seeking research funds from external sources. In the USA, organisations offering funding tend to be focused on "curing children" and so they fund proposals which will serve their political goals - and they regard midlife and senior age people who are on the spectrum as a lost cause, not 'fixable' by external means and of no value as human beings anyway, for the most part. Rather sad situation isn't it?

All of the research which I have found to date, addressing quality of life issues for older ASD people, has been done in countries other than the USA.

If anyone does know of a single well-designed study in the USA, independent of funders like AS (though that is often hidden), please post a link to it here.

To me the report simply states that whatever percentage have achieved "living independently," "relationships" etc but words on paper and percentages do not describe the human details behind those statistics. Details like whether or not those things, things like living independently, holding down a job or relationship, were hard come by and hard to hang onto, hard to maintain even if maintained, or eventually burned out upon.

Not trying to burst any bubbles, just pointing out that statistics that appear to look like success don't mention that the apartment is horrible, the job is hated, the education didn't land a better job after all, and the marriage is failing.

BirdinFlight, the link only shows the abstract of the study, a brief overview of what they did and what they found. The substance is in the full research report, which is not given public access via Pubmed in this instance. If you like I will try and access the full report for you.

I'd fit into this study pretty well. I was 34 when I was first introduced to the possibility of being autistic. I've experienced LOTS of depression, almost exclusively related to my relationships. I had gone back to school shortly before that, began increasing my value to others in relationships, had a decent apartment, and had my marriage fail shortly after.

I'd rather have that failing job, education that I'm still pursuing but hasn't led to a much improved job, working on getting an "upscale" apartment at some point, and the lessons learned from that failed marriage RATHER than constant supports from a young age which would have deprived me of arriving at this things independently, albeit painfully. Looking forward, the "suspected" famous Aspergarians all had great success later in life compared to early in all of these areas.

Yes, the statistics look like a success.

Quote "Looking forward, the "suspected" famous Aspergarians all had great success later in life compared to early in all of these areas".

Yes, I have often noticed that, the Late Bloomer Phenomenon is also a pronounced pattern for HFAs now and in past decades (from what I have seen and read).

In evaluating this study, please look under "Methods" for how the participants were selected. They essentially took all adult charts in an outpatient specialty clinic for ASD. Now, people don't go to a clinic in the first place unless there is some difficulty in their lives. So you are still looking at autistic adults with some distressing psychiatric condition, 50% had depression, I'd be willing to be there was also a high level of anxiety but that was not reported and perhaps not studied.

Not saying it's a flawed study, but it's so, so important to understand research design before trying to understand any conclusions.

I agree. Unfortunately this is German study published in a German Journal and the design is inaccessible to me; I dared to assume that PubMed would have checked the peer review requirements which would have considered the design and methodology. In almost every study, however robust, there are some methodological flaws. Whether the subjects here had anxiety is unknown and they may have screened for that. We don't know, and won't unless someone has access to the original. All the same, I like to acknowledge studies that appear to contradict the negativity.

This probably wouldn't yield a good translation--and it's rather time-consuming:

But couldn't one potentially type out the contents of this study on Google Translate?

Only if you have access to that journal. A lot of journals are subscriber only, particularly French and German ones.

This doesn't exactly advance the cause of autism.

These sorts of studies could serve to transcend the stereotypes proliferating around us.

In a general sense, this is analogous to one police agency not communicating with another police agency about a fugitive.

I guess there's a reason for this sort of exclusivity--maybe the journals fear that someone will infringe upon their copyright in some way?

kraftiekortie, the economics of a scholarly journal are that you never make any money, and if the whole world can get the journal free online, you don't even get the minimal base subscription funding.

A lot of these journals, if you go to a major university library, they do have a digital subscription you can use. Just not at home.

It's the same issue as paywalls at Wall St. Journal and New York Times - those media outlets will go away if they go broke. I think publishing is a very, very tricky industry to survive in, as witness the hundreds of local papers that have gone out of business. There are too many other, free sources of information, so the old school print media can't compete.

I see what you mean.

The realities of economics cannot be denied...alas!

I accessed the database for psychology literature (PsycInfo) at my university library, and did a search for adult autistic outcome. There were 826 results, some of them quite recent. I would say there is ongoing active research on the topic, it just may not be easily located or accessible by Google search.

For instance, this report appeared interesting: Mindfulness-based therapy in adults with an autism spectrum disorder: Do treatment effects last?
Authors: Kiep, Michelle, Adult Autism Center, GGzE, Eindhoven, Netherlands, [email protected]
Spek, Annelies A., Adult Autism Center, GGzE, Eindhoven, Netherlands
Hoeben, Lisette, Adult Autism Center, GGzE, Eindhoven, Netherlands
Address: Kiep, Michelle, Adult Autism Center, GGzE, P.O. Box 1418, Eindhoven, Netherlands, 5626 AB, [email protected]
Source: Mindfulness, Vol 6(3), Jun, 2015. pp. 637-644.

"In conclusion, MBT-AS appears to be an effective method for reducing a variety of symptoms, and treatment gains remain stable over the longer term. "