Self Dxers Who Don't Want a Diagnosis; Why Not?

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firemonkey
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14 Feb 2020, 4:31 am

That's a good article from the Guardian . I had a post dx appointment . I was given a post diagnostic booklet at the end of the appointment . A few days later I received a typed summary of that appointment .

There are groups in near by towns , but I can't get to them . Nothing has changed other than having my belief there was more than mental illness going on validated .



B19
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14 Feb 2020, 4:47 am

Tonight I have been reading from an ebook online called "The Nine Degrees of Autism" which includes a diagram of the model showing AS life in a developmental depiction of nine stages of life, and its theme is the recognition of "the whole person", not an incomplete creature defined merely by a medical diagnosis, but by stages of lived experience.

Quite a lot of it is available free, including the page showing the alternative model of life stages it proposes as a more accurate developmental description. I liked it a lot.

It's a welcome antidote to the dehumanisation of the medical model that focuses only on deficiency, which is dehumanising.



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14 Feb 2020, 4:59 am

B19 wrote:
What support would an retirement age AS person living alone in the USA receive specific to their neurotype?

..

Or the UK?
https://www.theguardian.com/social-care ... ow-to-talk

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firemonkey
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14 Feb 2020, 5:12 am

B19 wrote:
Tonight I have been reading from an ebook online called "The Nine Degrees of Autism" which includes a diagram of the model showing AS life in a developmental depiction of nine stages of life, and its theme is the recognition of "the whole person", not an incomplete creature defined merely by a medical diagnosis, but by stages of lived experience.

Quite a lot of it is available free, including the page showing the alternative model of life stages it proposes as a more accurate developmental description. I liked it a lot.

It's a welcome antidote to the dehumanisation of the medical model that focuses only on deficiency, which is dehumanising.


Can you please provide a link to that ebook.



B19
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14 Feb 2020, 5:15 am

Yes. I smiled at reading that, though it also makes me feel quite saddened. You've certainly been a support to me through some challenges. (Replying to APOM)

FM: I'll find you the link to the Nine Stages in a minute.



B19
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14 Feb 2020, 5:21 am

I can't seem to do a direct link to the ebook for you but if you google this, you will find it:

The Nine Degrees of Autism: A Developmental Model

Not sure which site I was reading it on, though it was probably Amazon



firemonkey
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14 Feb 2020, 6:10 am

Thanks .



firemonkey
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14 Feb 2020, 6:16 am

Unfortunately I couldn't find any chapters of the book to check out .



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14 Feb 2020, 10:37 am

StarTrekker wrote:
I'm sorry to those who found my question accusatory or divisive, that wasn't my intention. I was just curious about what could lead people with significant challenges to determine that managing those challenges alone was preferable to doing so with support. I just know that I can't survive on my own without the supports my diagnosis has yielded, but I forget that this isn't true for everyone.


I think it's a perfectly reasonable question to ask. People are different and have different needs. I was lucky enough to be from a family where my parents could afford to send me to speech therapy and such the like as a child. I am lucky now to have a job where I can send myself to mental health professionals. It's true that getting a DX would free up a bunch of government funding for me, but I've gotten by so far without it, and so really anything that changes my routine is kinda scary. Furthermore, I know that these government programs in my country are underfunded and under attack from certain politicians right now. So I feel as though if I can get by without it, ethically, I should.



Breaknoise
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14 Feb 2020, 10:57 am

firemonkey wrote:
Unfortunately I couldn't find any chapters of the book to check out .


Hello firemonkey. You can check some content of the book as a example in amazon:

https://www.amazon.com/Nine-Degrees-Aut ... B0166ZORXI

You have an icon above the cover, which says Look Inside, just click and read the example :D


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firemonkey
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14 Feb 2020, 11:40 am

I love belko61 wrote:
It's much different with me and others of my generation. We learned coping skills and "sucked it up" because we had to and there were no supports that I'm aware of.it.


For some of us it was too severe to 'suck it up' but not seen as severe enough ,at the time , to get help and support .



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14 Feb 2020, 1:15 pm

magz wrote:
StarTrekker wrote:
I was just curious about what could lead people with significant challenges to determine that managing those challenges alone was preferable to doing so with support.

You imply that diagnosis = support, no diagnosis = no support.


Well... yeah... I mean, what supports become available to you after you assign yourself a label that you didn't have before you did that?


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14 Feb 2020, 2:36 pm

StarTrekker wrote:
Well... yeah... I mean, what supports become available to you after you assign yourself a label that you didn't have before you did that?

Knowledge.
Words to describe things. In my case, the most important term was "sensory overload" - I finally knew what this pain-like sensation "when I had no reason to cry" was.


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14 Feb 2020, 3:35 pm

After my revelationary moment of initial self discovery - which occured because my NT daughter told me she had come to believe that her Professor of Engineering/Head of University Department husband - my son-in-law (with whom I have always synched on a personal level) - "had Aspergers Syndrome". She has no background in the field but has academic degrees in science, journalism, theology and law. This was in 2012. I had never heard of Aspergers Syndrome, (she wrongly assumed that my social science training had equipped me with knowledge of Aspergers) though I was intrigued, visited the library, found Tony Attwood's major book, took it home, read it cover to cover, and sat in my bedroom in a stunned state of massive revelation. I did see my son-in-law in there, but more shockingly, I saw myself.

The first support I experienced was shortly afterward on Wrong Planet. On my first visit I read posts new and old for nearly 6 hours nonstop, and could hardly believe that here was a community of people, many of which described and discussed issues that I had been experiencing for a lifetime, but had thought of them as "just me". The scales fell from my eyes and I looked back at my life as a whole, and as incidents which now appeared not minor incidents at all, but a pattern of experiences which typified the experiences of Aspergers Syndrome. I began to read every book and article I could find, and for six months studied intensively. So my support journey began on Wrong Planet, which had more older members them, more highly qualified graduates, and was often more serious in discussion that the more bland range of topics which are typical now.

So my journey began, the reclaiming of my identity, and identity I had not known I had always had. What a revelation. Self discovery in itself would have been enough for me. However due to harassment here, from a few rather obnoxious young men who posted dismissively of the "self diagnosed", I decided to formalise my status by visiting a another psychologist counsellor who specialised in Aspergers recognition. I use the word recognition on purpose. First I recognised my son in law, then myself, then the "expert" recognised me. I had enough confidence and knowledge to be self validating, so the professional's opinion only confirmed that.

The support began here, amongst my own tribe, by members who are no longer here. I am grateful to them.



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14 Feb 2020, 6:06 pm

B19 wrote:
What support would an retirement age AS person living alone in the USA receive specific to their neurotype?

I mentioned on a post (a different one?) that I have support group members receiving Executive Function assistance as EF worsens with age (and was bad to start with for them -and me).

Last month a law was passed in my area (or national?) that medical coverage for adults with ASD is mandatory (previously it was just children). So now insurance has to cover ASD-related treatment (assessment, OT, PT, etc.) Among other things, I would really like to find professional help for sensory issues, but am told it's unlikely --- so this law should help increase that possibility.



B19
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14 Feb 2020, 7:13 pm

It's very different where I live. All NZ citizens of whatever age and stage and neurology are covered for medical care by the government, its automatic, not age limited, a fundamental right.

However they are not quite on board with how AS patients may present especially in acute emergency situations, nor does the system understand that AS people have different communication styles. So provision isn't everything.