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Any Asperger advocates (activists) here on AspiesCentral??

Discussion in 'General Autism Discussion' started by MROSS, Feb 16, 2017.

  1. MROSS

    MROSS Active Member

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    Hello,

    It deserves to be asked if there are Aspergers activists who advocate "face-to-face" on behalf of overlooked concerns regarding adults with Aspergers?; that is, it seems natural to become involved in such advocacy; especially after reading, and posting to 'Aspies Central' increasingly becomes a "tiring exercise in semantic gymnastics!" -- on other words, how many of us get the impression of "spinning our wheels??"

    Personally, the experience of struggling with the CA state's services for developmental disabilities proves confounding.

    Once more, as the following discussion thread shows, CA might just have that "open window of opportunity" to be "ahead of the curve" in providing services appropriate for Aspergers. Yet, it appears our allies concerned with 'High Functioning Autism' (HFA) are "asleep at the wheel!"

    See LINK: The California Regional Center System & High Functioning Autism? [the efforts of Ron Huff]
    LINK: The CA Regional Center System & High-Functioning Autism?

    Another "out of the box" approach (for lack of a better term):

    With Aspergers involved, the needs of both seniors, and adults who have least restrictions to independence share a lot in common; difficulties with executive functioning.

    Trust management services that provide services for senior citizens might just provide good examples concerning Aspergers esp. if we find appropriate services for our aging parents who also have least restrictions to independence!

    Such services are not supported by state developmental service agencies, hence private-pay options must be kept affordable! Private-pay options can be kept affordable; especially if services are sought once, or twice a year.

    Specific support services involve the presence of "third party" advisors involving major financial transactions, as well as some health and medical issues, purchasing a vehicle, understanding, and filling-out paperwork, and property transactions e.g., rental issues.

    In a complex world, it's sometimes necessary for even Neurotypicals, and Asperger clientele to enlist trusted advisors to navigate those tricky consumer agendas, as well as providing follow-up support services.

    * Note to readers in the UK. Simon Baron Cohen of Cambridge University has received interest in the Asperger Community here in the US. How have Simon Baron Cohen's efforts help define services appropriate for adults with Aspergers?

    Thank-you
     
  2. FreeDiver

    FreeDiver How long can you hold your breath?

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    One of the biggest problems with doing advocacy of any kind is that you need to be social and got out there to represent your case. That poses a big problem for most aspies because we are not social enough to do an advocacy. It's like we're required to fight this war with a weapon that we don't have access to or don't know how to use. Sadly though, we are our own worst enemy.
     
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  3. xudo

    xudo something V.I.P Member

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    Can I ask why you feel this way?
     
  4. toothless

    toothless this is mr shadow,my support cat V.I.P Member

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    not quite what your asking but im an LFA and intellectual disability activist,working both online and offline in various settings-paid and unpaid,i might be LFA however i defend the whole spectrum and i think aspie activists need to be doing this as well-you cant tell those people who say aspergers isnt autism;that its autism and say your proud of autism if you dont at least defend the rights of the rest of the spectrum,that is why i will defend to any level from the questioning and self diagnosed well functioning aspie to the profoundly classic autistic.

    if your wondering why people have reacted negatively to what youve said previously its because you expected people to want to go along with your plans when it just wouldnt work on a community like this, a community where you might find aspies and auties who have been brought up bullied,abused,prejudged and discriminated against by NTs and perhaps like me they might want a sanctuary away from a ASD forum with a majority of NTs to avoid anymore hurt and/or the capacity to say what they want without being judged like they have been in their life, though im sorry for bringing that topic into this topic.
     
  5. MROSS

    MROSS Active Member

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    As I said, with all the reading, and posting, it's easy to get that sense "of spinning our wheels" resulting from the lack of concrete examples (action plans) of specific efforts, and resources e.g., business cards with the names of trusted advisors, the experiences others have of meeting with advisors, the paperwork, costs of services involved i.e., private-pay, or costs covered as a part of eligibility for state Govt. services?

    As mentioned in LINK in original post, there appears to be that "open window of opportunity" to develop services responsive to the needs of adults with High-Functioning Autism; from surveys taken by CA state developmental services in the Silicon Valley Region, home to many with Aspergers. Where are the follow-up efforts from these surveys??

    As mentioned, why is it the very interests concerned with the Autism Spectrum seen to have "fallen out of the loop" and hence appear "asleep at the wheel??"
     
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  6. Bolletje

    Bolletje Well-Known Member

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    I still don't really understand what you mean by spinning our wheels. Living in the Netherlands I'm not really involved in politics in CA anyway. I don't feel like I have anything to fight for where I live.
    I'm on these forums for my personal development, and this being an international forum I think it would be very hard to collect resources useful for everyone, as things like business cards and government policies tend to be quite local.
    I feel like this place is more for sharing personal experiences. I wouldn't mind if people want to get all political up in here, it's just not for me.

    My advocacy is on a way smaller scale. I try to educate friends, family and fellow students. I've offered to speak at my med school to increase awareness of autism in adults, autism in women and the fact that ASD can be subtle and therefore easily missed. I've yet to hear back on that one, though.
     
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  7. MROSS

    MROSS Active Member

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    Hello Bolletje,

    The story 'Why is Silicon Valley the Home of Autism?’(LINK at end of this post) covers surveys taken in the Silicon Valley Region by CA state developmental services; that is the surveys found a disproportionately high demand for Autism services in the best known technology region.

    Regions largely involved in the technology industries have a higher-than average population of people with Aspergers.

    In short, the results of these surveys have the potential to act as “a model of sorts” in shaping services responsive to the needs of adults with High-Functioning Autism (HFA). In other words, I’m personally more interested in the tangible aspects of “model services” than the politics; as I personally value the need of benefiting from such services!

    As mentioned in the story 'Why is Silicon Valley the Home of Autism?’, there appears to be that "open window of opportunity" to develop model services responsive to the needs of adults with Aspergers. Yet, what happened to that very "open window of opportunity?" It appears that our allies concerned with (HFA) have “fallen out of the loop” and even appear "asleep at the wheel" on reassessing, and developing much-needed services!

    In 2015, the State of CA changed eligibility to deliver developmental services for clientele with mild developmental disabilities e.g., Aspergers. I receive these CA services, and not surprisingly, it’s proven disappointing, a “struggle with the system.” I can’t help but mention that the very agencies involved with the Silicon Valley survey of Autism (whose findings appear “lost in the shuffle”), are a part of the same agencies personally delivering services i.e., complete with bureaucratic “red-tape,” misinformation, and lack of information. Hence, long story short, this is what I mean by “spinning my wheels!”

    I'm hopeful that my activism (for lack of a better word) yields much-needed results in the Aspergers community; hence opportunties to finally "slow down" and put my "activism hat" to rest!

    Are you aware of the work of Simon Baron Cohen of Cambridge University in the UK? Cohen has received interest in the Asperger Community here in the US. How have Simon Baron Cohen's efforts helped define resources appropriate for adults with Aspergers?

    It’s also been noted in the Asperger community the examples of Asperger awareness in Denmark. It seems that support for Aspergers in Denmark stems-from that country’s social safety-net programs. An employment program to help Aspergers clients with secure employment in technical fields was begun in Denmark, and now has one of a few U.S. chapters in the Silicon Valley.

    What is the level of Aspergers support in the Netherlands?

    LINK: 'Why is Silicon Valley the Home of Autism?’ http://www.mamamia.com.au/autism-research/

    Thank-you
     
  8. Bolletje

    Bolletje Well-Known Member

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    I know the main tech area in the Netherlands has a disproportionately large number of Aspies (most of my family live and work there, not coincidentally, it's the Silicon Valley of the Netherlands). Health insurance is mandatory here and therapy for Aspergers is covered. Depending on the severity of Aspergers we can get different amounts of help. I had the option of going on welfare, personally, but I chose to try and pursue a career first (as the two are mutually exclusive here).
     
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  9. Bolletje

    Bolletje Well-Known Member

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    Aside from that, tech companies have started hiring people with Aspergers/HFA out of high school. They offer paid education to people on the spectrum, with the promise of a job afterwards.
    Other than that, the government will help you find a job that fits your specific personal skills if you're on disability welfare.
     
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  10. MROSS

    MROSS Active Member

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    Hello Bolletje,

    Being familiar with the TECH. Region in Holland; home to a disproportionately large number of people with Aspergers, how receptive is Holland's Tech. Region in trying new service approaches to better serve people with Aspergers? What are the supports for these services, non-profits, private pay, Govt. support?

    As mentioned in the original post regarding assessment of Autism services in the CA. Silicon Valley Region, there have been no decisive details of Autism services "ahead of the curve so to speak" in the Silicon Valley Region; especially as it concerns High-functioning Autism e.g., Aspergers.

    The top priorities in delivering Govt. funded / volunteer services naturally goes towards serving people with developmental disabilities needing frequent supports. As a result, people with Aspergers often don't fit into such service frameworks.

    Basically, defining services appropriate for Aspergers remains elusive. Any supports are best offered though trusted family/friends, or private-pay services; the equivalent of approaches "ahead of the curve so to speak!"

    The original post contains details regarding the service needs for adults with Aspergers, which can draw parallels to services appropriate for senior citizens with "least restrictions to independence." I'm also mindful of my elder parents who still maintain independence. Trust-management services "might just fit the bill", and are services regulated by the Govt.

    Yet, are trust-management services receptive towards assisting non-senior citizens?

    Thank-you
     
  11. Bolletje

    Bolletje Well-Known Member

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    I'm not sure whether new approaches in housing or care are being tried. As you stated in your post, government help usually goes towards people with more severe developmental difficulties. I feel it's no different here. With healthcare becomnig more of a drain on natural sources yearly, the government tries to cut back where it can.

    Sadly, our healthcare has been hit especially hard by these cutbacks. The government has drafted a plan in which disabled people (whether elderly, physically or with psychological/psychiatric problems) stay at their own houses as long as possible. At the same time, they have cut back on funding for healthcare at home, greatly reduced the number of ailments that are covered by healthcare insurance, and by cutting funding for specialized psychological care have increased the waiting list for any non-private psychologist to over 6 months.

    We now have a very dire situation in which increasingly often, people with psychiatric disorders are wandering the streets, perceived as threatening and arrested by police, sometimes being injured or killed in the process. At the same time, elderly people aren't able to receive the care they need at home, but are ineligible for a spot in an elderly home because their problems aren't perceived as serious enough. It's disheartening to say the least.

    When I was diagnosed at 29 my treatment team informed me that there is a regional treatment center for adults with autism that helps them with aspects of everyday life, helps them find suitable housing and suitable work. However, I was functioning too well to be eligible for referral. I was fine with this, because I agree, but I never stopped to consider that there might be people like me out there that do want the additional help. Those people may very well be falling through the cracks of the system, just like so many people are these days.

    The homes for assisted living that are eligible for people on the spectrum are owned by mental health institutions and are mixed houses with people with psychiatric disorders living in them. Some houses are meant for a short stay, where the inhabitants are taught to be increasingly independent, with the intention of sending them back into society to live by themselves. I'm not sure how many homes for semi-permanent stay are available, but I'm guessing there won't be many.
    There used to be quite a number of farms where people with developmental disorders could live, in relative peace and quiet, but most of these have been shut down by lack of government funding as well.

    I think it's tricky to establish whether an adult with HFA/Aspergers is in need of additional help of this kind. I don't think the government should be the one to decide this, but it should be judged on a case by case basis by healthcare professionals and social workers, and whether the individual wants this kind of help in the first place. But with the current lack of healthcare funding I'm guessing this group isn't going to be eligible for anything soon.

    Coincidentally, I'll be attending a Q&A with our state secretary of Health in two weeks. I've written down many of my concerns regarding the topics I described above, I sincerely hope I'll be able to ask my questions.