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JustFoundHere
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08 Aug 2019, 1:31 pm

It's natural to be outspoken here on WP as it concerns negative sentiments on just how the Autism Spectrum is treated. Personally, I've expressed alot of shortcomings regarding just how the Autism Spectrum is treated.

The Autism Speaks agency has received alot of negative feedback here on WP. I looked-up this agency on Wikipedia - I'm still not clear on why this specific agency has been criticized. (Please post any concerns on Autism Speaks in a separate discussion thread).

Anyways, it's also natural to overlook those positive efforts that understand the challenges regarding the Autism Spectrum.

To "break the ice" so to speak, the Asperger / Autism Network (AANE) in the Boston area appears "ahead of the curve" in understanding the Autism Spectrum. Autism Spectrum/HFA resources far from the Boston Area can learn best practices from AANE. From being on AANE's mailing list, AANE appears aware of how to treat HFA difficulties in encouraging friendships.

As the subject in this tread implies, we have to encourage those allied with HFA. And part of encouraging allies sometimes means expressing disappointment to our allies - it's disappointing that AANE has not developed an active presence here on WP.

Why has WP not showed-up on AANE's radar screen? The Autism Spectrum offers enough uncertainty already. We don't need the complacency of allies on top of everything else.

Can we here on WP demonstrate an active interest in AANE's feedback, resources, experiences, etc.? Such feedback might just encourage much-needed positive sentiments here on WP!



Mona Pereth
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08 Aug 2019, 4:21 pm

AANE is an organization run by professionals (e.g. psychotherapists and social workers). They are likely very busy with just their jobs plus the administration of the organization. Insofar as they do active public outreach, it would most likely be directed mainly to toward the relevant professional worlds and occasionally the general public. With that, plus their web presence, they have no particular need to do outreach on Wrong Planet.

If they were to do any outreach on Wrong Planet at all, it is unlikely that they would consider it worth their while to get into discussions with us, because that would be a time-consuming activity that they aren't getting paid for. So, if they were to do any outreach here at all, they would probably prefer just to post occasional announcements with links to their website.

Problem: The latter would be against WP's rules. According to the rules:

Quote:
Mentioning your own site is only permitted once you've contributed substantial useful content to the forums

If you think an exception to this rule should be made for a few select organizations like AANE, you might want to propose this idea in WrongPlanet.net discussion.


_________________
- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


JustFoundHere
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09 Aug 2019, 12:49 pm

What are AANE's roles (or potential roles) with the various state govt. agencies overseeing services (including private and non-profit agencies) for clientele with developmental disabilities?

Here in CA, and likely in the State of Mass. (where AANE is located), the state govt. agencies are serving a growing percentage of clientele HFA who recent years have become eligible for state supported services. Clientele with HFA presents whole new challenges for agencies in both developing, and providing services.

Personally, I've mentioned AANE to my counselor, and was referred to an Autism coordinator. I was advised that it wouldn't hurt to mention AANE. I was also referred to resources in San Francisco, and encouraged to develop a correspondence with HFA advocates in SF; as in SF there is an interest in understanding HFA (critical-mass is an excellent term to describe interest in HFA).

Personally, I'm one person with HFA mentioning AANE to various staff at state govt. supported agencies. If enough people on the Autism Spectrum mention AANE to their service providers, then AANE might actually make the time to advise state govt. agencies on best practices in serving clientele on the Autism Spectrum - HINT, HINT for WP activism!



vermontsavant
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11 Aug 2019, 8:58 am

I am looking at AANE'S website right now on my smart phone.it looks pretty interesting.It appears to have a lot of recources and quite in depth at that.


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JustFoundHere
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11 Aug 2019, 6:39 pm

vermontsavant wrote:
I am looking at AANE'S website right now on my smart phone.it looks pretty interesting.It appears to have a lot of recources and quite in depth at that.


Thank-you for your response!

What state in New England are you located? The State of MA. is home to AANE. Do you receive state govt. support services available to people on the Autism Spectrum? I sense that the neighboring states to MA i.e., CT, NH, and VT would be very receptive to learning best practices from AANE in serving clientele on the Autism Spectrum.



vermontsavant
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12 Aug 2019, 5:32 am

JustFoundHere wrote:
vermontsavant wrote:
I am looking at AANE'S website right now on my smart phone.it looks pretty interesting.It appears to have a lot of recources and quite in depth at that.


Thank-you for your response!

What state in New England are you located? The State of MA. is home to AANE. Do you receive state govt. support services available to people on the Autism Spectrum? I sense that the neighboring states to MA i.e., CT, NH, and VT would be very receptive to learning best practices from AANE in serving clientele on the Autism Spectrum.

I live in MA Im not sure if any of the supports I get are from the state or from the feds


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JustFoundHere
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13 Aug 2019, 9:58 pm

As both state govt. supported agencies, and non-profits (some of which contract with the govt.) that serve clientele with developmental disabilities more limiting than HFA, serving clientele with HFA presents whole new challenges for for these agencies.

With agencies receiving state govt. support, the states acts as a gatekeepers, which from my own experiences seems to slow necessary progress in serving HFA clientele. I've mused that it is either time to reassess the roles of gatekeepers, or enlist new-gatekeepers experienced with HFA. It "is what it is" that are gatekeepers in the loop.

It might be best to raise awareness of HFA by mentioning AANE to your state govt. supported counselors/advisers Again, the idea here is to encourage state govts. to demonstrate an ample interest in understanding the needs of HFA clientele - so AANE will make the time to correspond with state govt. agencies regarding AANE's best practices in developing services for HFA clientele.

Call to action: Mention AANE www.aane.org to your counselors/advisors.



JustFoundHere
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15 Aug 2019, 12:57 pm

JustFoundHere wrote:
As both state govt. supported agencies, and non-profits (some of which contract with the govt.) that serve clientele with developmental disabilities more limiting than HFA, serving clientele with HFA presents whole new challenges for for these agencies.

With agencies receiving state govt. support, the states acts as a gatekeepers, which from my own experiences seems to slow necessary progress in serving HFA clientele. I've mused that it is either time to reassess the roles of gatekeepers, or enlist new-gatekeepers experienced with HFA. It "is what it is" that are gatekeepers in the loop.

It might be best to raise awareness of HFA by mentioning AANE to your state govt. supported counselors/advisers Again, the idea here is to encourage state govts. to demonstrate an ample interest in understanding the needs of HFA clientele - so AANE will make the time to correspond with state govt. agencies regarding AANE's best practices in developing services for HFA clientele.

Call to action: Mention AANE http://www.aane.org to your counselors/advisors.


ADDENDUM: If enough people on the Autism Spectrum make donations to AANE, then AANE might make the time to give one-on one consultations.



JustFoundHere
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19 Aug 2019, 3:26 pm

JustFoundHere wrote:
JustFoundHere wrote:
As both state govt. supported agencies, and non-profits (some of which contract with the govt.) that serve clientele with developmental disabilities more limiting than HFA, serving clientele with HFA presents whole new challenges for for these agencies.

With agencies receiving state govt. support, the states acts as a gatekeepers, which from my own experiences seems to slow necessary progress in serving HFA clientele. I've mused that it is either time to reassess the roles of gatekeepers, or enlist new-gatekeepers experienced with HFA. It "is what it is" that are gatekeepers in the loop.

It might be best to raise awareness of HFA by mentioning AANE to your state govt. supported counselors/advisers Again, the idea here is to encourage state govts. to demonstrate an ample interest in understanding the needs of HFA clientele - so AANE will make the time to correspond with state govt. agencies regarding AANE's best practices in developing services for HFA clientele.

Call to action: Mention AANE http://www.aane.org to your counselors/advisors.


ADDENDUM: If enough people on the Autism Spectrum make donations to AANE, then AANE might make the time to give one-on one consultations.


ADDENDUM #2 of 2:

Why the lack of discussions on AANE; that is positive, negative, or even neutral sentiments of AANE? Why the silence, and even uncertainty regarding AANE?

To review, to reassess:

* What are AANE's roles (or potential roles) in advising various state govt. agencies overseeing services (including private and non-profit agencies) for clientele with developmental disabilities?

* Any consideration for small donations of money to AANE? The idea here is that AANE might make the time to give one-on-one consultations (even by online communications) which state govt. supported agencies are not equipped to provide.

* Both of the above?



cyberdad
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19 Aug 2019, 10:27 pm

Sorry you have to excuse my confusion

Asperger / Autism Network (AANE)
Autism Spectrum. Autism Spectrum/HFA resources

I read this organisation encompasses the "spectrum" but then you are focusing on the urgency to find "friends/allies for the HFA community?

Why don't you just call this organisation for what it really is....an Asperger Network (AN)

Now it seems Aspergers/HFA communities have appropriated the terms autism and spectrum for themselves but want to maintain the apartheid from the old days in excluding moderate-low functioning autistic people from their little plans of creating some type new network with NT allies.

I actually think things were more straight forward in pre-DSMV days before 2013 when Asperger organisations didn't hide the fact they wanted nothing to do with the term "autism" because of the stigma/shame they felt from the wider NT community.



Mona Pereth
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20 Aug 2019, 5:23 am

cyberdad wrote:
Sorry you have to excuse my confusion

Asperger / Autism Network (AANE)
Autism Spectrum. Autism Spectrum/HFA resources

I read this organisation encompasses the "spectrum" but then you are focusing on the urgency to find "friends/allies for the HFA community?

Why don't you just call this organisation for what it really is....an Asperger Network (AN)

First off, the people in charge of that organization (including its name) are not here on Wrong Planet. JustFoundHere is, apparently, an admirer from afar who wishes there were an organization where he is, in California, that offered all the same services as AANE. (JustFoundHere, correct me if I'm wrong.)

Second, under the DSM IV, HFA was not the same thing as what used to be called Asperger syndrome. "High-functioning autism" was an informal label given to people who had been diagnosed with "autistic disorder" but who were not intellectually disabled.

The three severity levels of ASD under the DSM 5 do NOT have a one-to-one correspondence with the three DSM IV diagnoses of "autistic disorder," PDD-NOS, and "Asperger's disorder." The DSM 5 severity levels cut across the DSM IV categories.

Had I myself been diagnosed under the DSM IV system, my guess is that I would have been diagnosed not as "Asperger's disorder" but either "autistic disorder" or PDD-NOS, I'm not sure which. Technically I could NOT have qualified for Asperger's because I didn't start talking until I was four years old. Technically also my boyfriend was mis-diagnosed with Asperger's, because he didn't start talking until he was four either (and, in his case, only with the help of a speech therapist, and he still has a speech impairment). So he too should have been diagnosed with either "autistic disorder" or PDD-NOS, I'm not sure which.

cyberdad wrote:
Now it seems Aspergers/HFA communities have appropriated the terms autism and spectrum for themselves but want to maintain the apartheid from the old days in excluding moderate-low functioning autistic people from their little plans of creating some type new network with NT allies.

I actually think things were more straight forward in pre-DSMV days before 2013 when Asperger organisations didn't hide the fact they wanted nothing to do with the term "autism" because of the stigma/shame they felt from the wider NT community.

People at different severity levels do have different needs. For example, at Level 1, many of us are capable of productive work if only we can find a sufficiently autistic-friendly workplace. So a big problem for many of us is finding employment. But for most people at Level 3, this is simply not an issue as they are not capable of being employed at all.

It is, in my opinion, legitimate to have organizations that address the specific problems of people at Level 1, just as it is also legitimate to have organizations that address the specific problems of people at Level 3, as well as organizations that embrace all of ASD.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


vermontsavant
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20 Aug 2019, 5:31 am

AANE is a pretty good organization,check out there website there is nothing shady about them


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cyberdad
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20 Aug 2019, 7:39 am

Mona Pereth wrote:
Second, under the DSM IV, HFA was not the same thing as what used to be called Asperger syndrome. "High-functioning autism" was an informal label given to people who had been diagnosed with "autistic disorder" but who were not intellectually disabled.


I think you are overestimating the capacity of people to delineate and navigate the historic technicalities of these terms, here on WP the acronym HFA is now synonymous with Aspergers.

Secondly you are wrong about HFA anyway. The old DSMIV classification for Aspergers was an IQ > 70 + no speech delay. A person with a speech delay could not have their IQ tested because of language/comprehension which means they automatically get labelled autistic.



vermontsavant
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20 Aug 2019, 8:39 am

cyberdad wrote:
Mona Pereth wrote:
Second, under the DSM IV, HFA was not the same thing as what used to be called Asperger syndrome. "High-functioning autism" was an informal label given to people who had been diagnosed with "autistic disorder" but who were not intellectually disabled.


I think you are overestimating the capacity of people to delineate and navigate the historic technicalities of these terms, here on WP the acronym HFA is now synonymous with Aspergers.

Secondly you are wrong about HFA anyway. The old DSMIV classification for Aspergers was an IQ > 70 + no speech delay. A person with a speech delay could not have their IQ tested because of language/comprehension which means they automatically get labelled autistic.
under the old system a person who an HFA meaning having autistic disorder with high inteligence could have there IQ tested.there IQ'S were typicaly average because of the speech delays


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20 Aug 2019, 10:21 am

A person who has no speech COULD be administered an IQ test.

Some people with no speech have been known to achieve "genius" IQs.