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kraftiekortie
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24 Sep 2015, 8:16 am

Seems like a pretty decent corpus. I hope there are some longitudinal studies within them--showing the progress of the person from a very young age to a relatively advanced one. I believe these are the best ways of really determining ultimate life outcome.



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24 Sep 2015, 9:41 am

BirdInFlight wrote:
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.


BeaArthur wrote:
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.



These seem like an unduly negative responses to the abstract. The study does not present Aspergers/HFA as as problem-free, it merely points out that the diagnosis does not mean no intimate partnerships ever for more than half the studied group and some degree of independent living for more than 2/3 of the group.

Quote:
The majority of patients (92 %) diagnosed with ASD suffered from high-functioning autism (HFA)/Asperger syndrome (AS) according to the criteria of ICD-10 (F84.5).

The ICD-10 F84.5 criteria can be found here:
http://iancommunity.org/cs/about_asds/i ... s_syndrome
Quote:
Qualitative abnormalities in reciprocal social interaction (criteria as for autism).

These criteria are not trivial. This group is not without problems by definition.

Quote:
The psychiatric history revealed a lifetime consultation rate of 78 %, most frequently with depression (50 %).

There is no reason from this to conclude that they did not study anxiety. The 78% figure seems to refer to psychiatric consultations for all causes with the 50% breakout specifically for depression.

Quote:
Achievement of an independent living status was reported by 68 % of individuals,
Independent living does not mean brilliant success or an easy experience.
Quote:
58 % reported about current or past intimate partnerships

To meet this, one would only have needed to have one intimate partnership in one's entire life, it is no claim of easy success in relationships.


I think these figures are cause for optimism in the face of the lies and negative propaganda that have been widely spread by Autism Speaks. They are a useful counter to the relentless prophecies of doom from that group.

Quote:
The high level of global intelligence supports the hypothesis of cognitively compensated autistic disturbances leading to the diagnosis comparably late in lifetime.

This seems to be consistent with the experience of many of us who went through schools before the idea of aspergers was known. We were not classically autistic, but not neurotypical either. We had to find ways to compensate and adapt.

Quote:
The lifetime rate of psychiatric consultations is high, reflecting the importance to consider a diagnosis of ASD even late in life.
This conclusion is far from the rosy picture that you seem to be objecting to.

There is nothing wrong with observing the reality that ASD doesn't mean you are automatically doomed to never have any intimate paternership and never live independently.

These points seem to already be part of the study.:
"you are still looking at autistic adults with some distressing psychiatric condition"
"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"

And not every marriage is failiing.

Sorry if this seems like a snarky response, but I really don't see the need to call for more negativity in what is a pretty straightforward report of results that refute some widely believed lies or false beliefs about autism. It's OK not to be relentlessly pessimistic and negative.



BeaArthur
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24 Sep 2015, 10:48 am

I didn't mean my remarks to be negative about the original citation, only to point out the limitations of that study. I actually think outlooks are very positive for at least a subset of ASD adults. I have no experience at all with Autism Speaks and don't wish to get into that particular controversy. Not going there.


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kraftiekortie
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24 Sep 2015, 11:33 am

Having Aspergers does not preclude success. I certainly makes it more difficult. Then again, difficulty frequently accompanies the attainment of success for people even of conventional neurology.



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24 Sep 2015, 2:47 pm

While I no longer have access to the University facilities in my retirement, I would be delighted if there were a plethora of reasonably designed studies on senior ASD adults.

In database searches, there may be a lot of results for "adults" though without the definition of "adult" and sampling criteria (eg 20 to 30 year olds enrolled in psychology 101) the vast majority are unlikely to refer to seniors.

I agree with you Adamantium, I didn't understand the negativity either, but we are all different.



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02 Jan 2017, 8:04 pm

Good life outcomes, and successful independent living partially depends on access to those professional services sometimes necessary to assist in navigating those "tricky" aspects of life.

Services offering assistance with transactions such as vehicle/auto purchases, and negotiating the process of renting an apartment are examples.

To enlist trusted, impartial "third parties" in those complex transactions that are periodically a part of everyday life can go "a long way" in boosting good life outcomes. Would such services be something like notaries offering some types of fiduciary services? If not, what specific types of professional services are applicable?

Thank-you



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07 Jan 2017, 4:29 pm

BeaArthur wrote:
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. "


Second page of this discussion thread, last post in this thread (as of this writing), first two of three paragraphs:

Good life outcomes, and successful independent living partially depends on access to those professional services sometimes necessary to assist in navigating those "tricky" aspects of life.

Services offering assistance with transactions such as vehicle/auto purchases, and negotiating the process of renting an apartment are examples.

-----------

The clinical studies on ASD and good life outcomes e.g., mindfulness are helpful. Yet, discussions on one important "piece of the puzzle" for good life outcomes are largely absent. What specific types of community resources (outside of clinical settings) provide those tangible services e.g., trusted professional advisors?

Good-life outcomes are largely based on access to concrete resources sometimes necessary to navigate those "tricky" agendas that are a part of everyday life. People concerned with ASD need to apply concrete, tangible resources in order to progress!

Any specific recommendations for professional services that are applicable??

Thank-you



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07 Jan 2017, 4:52 pm

Here wrote:
The clinical studies on ASD and good life outcomes e.g., mindfulness are helpful. Yet, discussions on one important "piece of the puzzle" for good life outcomes are largely absent. What specific types of community resources (outside of clinical settings) provide those tangible services e.g., trusted professional advisors?

Good-life outcomes are largely based on access to concrete resources sometimes necessary to navigate those "tricky" agendas that are a part of everyday life. People concerned with ASD need to apply concrete, tangible resources in order to progress!

Any specific recommendations for professional services that are applicable??

Thank-you

Case management services in a community based outpatient program would be very well suited to this need. In the US, and I think also the UK, the availability and quality of such programs vary widely from location to location.

A case manager can do some of the direct service necessary, for instance to get and move into a low-income apartment or practice taking public transportation. The case manager should also know what other services are available in the community and help the client (sometimes called "consumer") access those services.

If case management services are not available, see if there is a county social worker who can assist sporadically, or check into a disabilities agency for specific help. Learn your helper's name and attempt to work with them in future on a repeat basis, which will reduce your anxiety level and also be most efficient, since she or he will already know some of your needs and issues.


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07 Jan 2017, 5:34 pm

BeaArthur wrote:
Here wrote:
The clinical studies on ASD and good life outcomes e.g., mindfulness are helpful. Yet, discussions on one important "piece of the puzzle" for good life outcomes are largely absent. What specific types of community resources (outside of clinical settings) provide those tangible services e.g., trusted professional advisors?

Good-life outcomes are largely based on access to concrete resources sometimes necessary to navigate those "tricky" agendas that are a part of everyday life. People concerned with ASD need to apply concrete, tangible resources in order to progress!

Any specific recommendations for professional services that are applicable??

Thank-you

Case management services in a community based outpatient program would be very well suited to this need. In the US, and I think also the UK, the availability and quality of such programs vary widely from location to location.

A case manager can do some of the direct service necessary, for instance to get and move into a low-income apartment or practice taking public transportation. The case manager should also know what other services are available in the community and help the client (sometimes called "consumer") access those services.

If case management services are not available, see if there is a county social worker who can assist sporadically, or check into a disabilities agency for specific help. Learn your helper's name and attempt to work with them in future on a repeat basis, which will reduce your anxiety level and also be most efficient, since she or he will already know some of your needs and issues.


Thank-you for your response!

My inquiry concerns affordable, private-pay services e.g., notaries that provide some types of fiduciary services, or some other applicable consumer-orientated advisory services.

One example that "comes to mind" was a seminar The 'Consumer Action' agency in San Francisco, CA hosted to an Independent Living Resource Center. The seminar covered issues such as recognizing, avoiding fraud, and cybercrimes.

Upon inquiry to 'Consumer Action' , I was advised that there is no formal designation of 'consumer advisory services'; as there are "way too many" consumer concerns," and "way to few" advisors to address consumer concerns in "one-on-one" consultations. Hence, the example of notaries; who may be able to offer some types of fiduciary services; that is providing much needed services to an overlooked clientele concerned with ASD.



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07 Jan 2017, 8:05 pm

I don't know what you mean by fiduciary services. Could you give examples?

A notary is just someone demonstrated to be honest and reliable, certified by the state, who will, for a small fee, state by his signature and seal that the person signing a document is who they claim to be, based on presentation of evidence such as ID. That is all a notary is. Now, a notary can also be a lawyer, a banker, an office employee, or anything else, but just being a notary does not mean you could provide any particular services beyond identifying a party signing a document.

Also, if you are a customer of a bank, they will usually notarize something for free.


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08 Jan 2017, 3:46 am

BeaArthur wrote:
I don't know what you mean by fiduciary services. Could you give examples?

A notary is just someone demonstrated to be honest and reliable, certified by the state, who will, for a small fee, state by his signature and seal that the person signing a document is who they claim to be, based on presentation of evidence such as ID. That is all a notary is. Now, a notary can also be a lawyer, a banker, an office employee, or anything else, but just being a notary does not mean you could provide any particular services beyond identifying a party signing a document.

Also, if you are a customer of a bank, they will usually notarize something for free.


To avoid confusion on the roles of fiduciaries, a link is enclosed: https://en.wikipedia.org/wiki/Fiduciary

Consumer advisory/consumer advocacy services seem "to fit the bill so to speak!" Services regulated by state and federal agencies overseeing consumer, and professional affairs.



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08 Jan 2017, 7:46 am

Yeah, you aren't gonna get anything like that.

If you want oversight of your funding, Social Security can arrange that, although I don't know who they select if there is no appropriate relative. There are a lot of problems with assigning your benefits check to a relative. Frequently the relative reasons that because they do a lot of stuff to help you, they are entitled to a good chunk of the money, without consulting you.

Developing a banking relationship, preferably at a small bank or credit union, can get you some free advice on how to manage money, develop a credit rating, and so on. Try to learn the banker's name and be respectful of the service they are providing - and don't abuse the relationship by demanding too much time.

For buying a car, etc., there is no formalized help. You need friends, to help you shop for a car, negotiate the purchase, and so on, if you can't do this on your own. A case manager (as discussed a few posts back) might be able to help you with this, but that would not be a fiduciary service - you would still be responsible for the money, getting insurance, etc.

So my best advice is to work really, really hard on informal relationships because there is no agency that will do all of these things for you.


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