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aspiesociologist
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17 Jul 2015, 10:12 am

Are you an adult who identifies as autistic, Asperger’s, or on the autism spectrum (PDD-NOS, etc)? Did you figure out that you were on the autism spectrum as an adult? Did you get diagnosed as an adult? While those with memoirs and blogs have shared their experiences, there is very little on the experiences of how adults more generally come to identify and get diagnosed as autistic. I am doing a survey to fill in these gaps. I want to know your story! You qualify for this survey if you:
-are over the age of 40
-identify as having an autism spectrum diagnosis
-are willing to take a survey on how you got there

Research on adults with autism who are not in dependent care is scant, and I seek to fill that gap.

The study will include a survey on the steps of identifying or getting diagnosed as autistic. The survey should take 20 to 30 minutes, depending on how detailed you are in your open-ended responses. There is no compensation for participating. If you are willing to be contacted for a compensated interview, you will have the opportunity to enter your contact information. That contact info will be completely separate from your survey data. All survey data will be completely anonymous. I will not be recording IP addresses or other tracking data.

Direct link to survey: https://winona.az1.qualtrics.com/SE/?SID=SV_4GUeeTGx2GjgFdr
Link to Facebook page: https://www.facebook.com/AgeIDAutismSurvey

PS: If you responded to my earlier post about interviews, I'm sorry! I was sick the past two days and thus am behind on contacting folks!


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iridescence
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17 Jul 2015, 4:49 pm

aspiesociologist wrote:
Research on adults with autism who are not in dependent care is scant, and I seek to fill that gap.
I think this is a very good idea and I really hope that further research will be made for this category of people (autonomous aspies adults).

I do not currently qualify to answer the survey. I’m over forty, but I’m not yet diagnosed (I’m waiting for an assessement in august with an autism expert). Autism was initially suspected more than three years ago by a psychologist with whom I had psychotherapy for anxiety disorder.

Good luck for your research.


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aspiesociologist
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17 Jul 2015, 11:48 pm

iridescence wrote:
aspiesociologist wrote:
Research on adults with autism who are not in dependent care is scant, and I seek to fill that gap.
I think this is a very good idea and I really hope that further research will be made for this category of people (autonomous aspies adults).

I do not currently qualify to answer the survey. I’m over forty, but I’m not yet diagnosed (I’m waiting for an assessement in august with an autism expert). Autism was initially suspected more than three years ago by a psychologist with whom I had psychotherapy for anxiety disorder.

Good luck for your research.


As long as you identify yourself as being on the spectrum, I'd like to hear from you! My hypothesis is that there is a larger population of folks 'missing' from the diagnosed population than we realize extrapolating from childhood rates. Of course, it is totally up to you! Thanks for your interest!


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Skurvey
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18 Jul 2015, 9:44 pm

Just completed the survey - don't know how those questions will give you a picture of our lives - but anyway there you go.

One little point - it is somewhat offensive that you do not consider Oceania/Australasia/Australia/New Zealand or the Pacific to part of the relevant world.


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aspiesociologist
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18 Jul 2015, 9:46 pm

Skurvey wrote:
Just completed the survey - don't know how those questions will give you a picture of our lives - but anyway there you go.

One little point - it is somewhat offensive that you do not consider Oceania/Australasia/Australia/New Zealand or the Pacific to part of the relevant world.


Good catch! Argh! I'm so sorry! (and an utter disgrace to my Kiwi grandfather - hah)


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Winona State University


aspiesociologist
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18 Jul 2015, 10:06 pm

As to what I hope to figure out with the survey... There is a great deal of knowledge within the community and about ourselves when it comes to identifying or getting diagnosed as autistic, but very little in the academic world. So one of my overall research projects is to document and systematize our/autistic perspectives and get them into the academic conversation. There is a faction of folks who don't believe in adults who seek a diagnosis in adulthood. I've literally been told this by psychiatrists and others. My IRB approval for my dissertation was held up for MONTHS because a reviewer, who worked with kids with profound disabilities related to autism, didn't believe that adults on the spectrum could form communities, or that those communities would be exclusively populated by "higher functioning" folks who weren't *really* autistic (hint: they aren't). So I'm trying to understand the basic processes of getting diagnosed or identifying as autistic. What are the most common steps? When do those happen? What are the gaps in time between steps? There are a few other measures thrown in as well - life satisfaction, for example - because I've also been told that getting a diagnosis must be depressing. Maybe it is, maybe it isn't, let's do some research instead of assuming that autism=death, m'kay? Because while *we* know these things, these steps, these feelings, they don't, and won't, without data.
The interviews ask much more in-depth questions, but I can't interview everyone, so I made a related survey to get some numbers to put the interviews in context.


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Winona State University


aspiesociologist
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20 Jul 2015, 10:11 am

WrongPlaneteers:
Your responses so far have been great to this survey. I'm so grateful! If you haven't taken the survey but it applies to you, I humbly ask for you to consider taking it.
If you are interested...
-I forgot Australia/New Zealand/Oceania as mentioned in a comment. Too late for the person who discovered this, but I ask that you simply indicate this in the text box at the bottom of the page.
-The back function doesn't seem to be working, so don't skip a page! I don't know why this isn't working, I can only blame the software. Argh.

Thanks again, Wrong Planet! <3


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Winona State University


jbw
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20 Jul 2015, 11:19 am

aspiesociologist wrote:
As to what I hope to figure out with the survey... There is a great deal of knowledge within the community and about ourselves when it comes to identifying or getting diagnosed as autistic, but very little in the academic world. So one of my overall research projects is to document and systematize our/autistic perspectives and get them into the academic conversation. There is a faction of folks who don't believe in adults who seek a diagnosis in adulthood. I've literally been told this by psychiatrists and others. My IRB approval for my dissertation was held up for MONTHS because a reviewer, who worked with kids with profound disabilities related to autism, didn't believe that adults on the spectrum could form communities, or that those communities would be exclusively populated by "higher functioning" folks who weren't *really* autistic (hint: they aren't). So I'm trying to understand the basic processes of getting diagnosed or identifying as autistic. What are the most common steps? When do those happen? What are the gaps in time between steps? There are a few other measures thrown in as well - life satisfaction, for example - because I've also been told that getting a diagnosis must be depressing. Maybe it is, maybe it isn't, let's do some research instead of assuming that autism=death, m'kay? Because while *we* know these things, these steps, these feelings, they don't, and won't, without data.
The interviews ask much more in-depth questions, but I can't interview everyone, so I made a related survey to get some numbers to put the interviews in context.

Very interesting background information.

I assume you have seen this blog http://neurocosmopolitanism.com/, which covers topics related to your intent. This interview also contains great observations https://youtu.be/LRSazCQQNnA.

I recently received a taste of the diagnostic process when my 12-year old son was diagnosed. We sought a diagnosis not to change anything about our son, but to give him access to tools that enable him to become more street smart in the typical world, not unlike giving him rain gear to cope with nasty weather. However, that's not the way the autism spectrum is framed by typical "professionals" who take a medical perspective, and seek to confirm a "disorder" and concrete "dysfunctions".

Our son is happy overall because he lives in a household with two aspie parents, and because we do not impose any typical behavioural expectations at home.

I am happy at work because I am self employed and have built a business together with a small group of aspies and BAP introverts. We collaborate on a daily basis and have great fun, 80% of our interactions are online. In an environment that is designed around aspie friendly values and expectations, aspies are great collaborators and community members. In contrast, the expectations and behavioural patterns encountered in typical work environments are toxic for aspies.



aspiesociologist
Butterfly
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03 Aug 2015, 8:17 pm

Hi All -
Thought I might bump this post - I've had an amazing response rate so far considering, just over 100 folks have taken the survey! I will be running this survey on-going, but already have some interesting preliminary results that I'd love to see if they hold consistent as more people take it. For example, person-first language is far from the preferred language for identifying one's autism!
What's your story? How do you identify? :D


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nerdygirl
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03 Aug 2015, 9:18 pm

I'm 39, but I've been married 18 years and have two kids. I relate more to people over 40 than under. Would it be a problem if I took the survey?



ToughDiamond
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04 Aug 2015, 1:27 pm

aspiesociologist wrote:
-The back function doesn't seem to be working, so don't skip a page!

Is it possible to adjourn part-way through and resume later? Don't want to mess it up if the questions turn out to be things I can't immediately get the answers to.



glebel
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04 Aug 2015, 3:34 pm

Great idea. I can relate to the concept of many undiagnosed adults being out there as I always knew that I had poor social skills, whereas my siblings, who obviously were raised the same, don't. I first had an inkling that I had Asperger's when a friend of mine was telling me about an innovative medical treatment that she received, developed by a doctor that had Asperger's. Her description of him sounded a lot like me ( not being able to hold eye contact, etc. ), so I checked it out. My AQ is 41, my score from the rdos website is 147/200 ND and 85/200 NT. As far as getting professionally diagnosed, what's the point.


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aspiesociologist
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04 Aug 2015, 3:59 pm

ToughDiamond wrote:
aspiesociologist wrote:
-The back function doesn't seem to be working, so don't skip a page!

Is it possible to adjourn part-way through and resume later? Don't want to mess it up if the questions turn out to be things I can't immediately get the answers to.


In theory if you don't close your browser, the survey will remain open for a week. However, because of the level of anonymity I've set on the survey, it doesn't record IP addresses, so once your browser window closes, there is no going back.
It was a bit of a prisoner's dilemma: strict anonymity and confidentiality because I'm dealing with "medical" information, or more stringent consent protocols which are quite demeaning to autistic adults, imho. I picked the strict anonymity. I'm sorry that doesn't allow folks to start and then stop without ending participation in the survey!


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aspiesociologist
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04 Aug 2015, 4:01 pm

nerdygirl wrote:
I'm 39, but I've been married 18 years and have two kids. I relate more to people over 40 than under. Would it be a problem if I took the survey?


The survey will likely run for a few more months - perhaps it will still be open when you're 40? ;)

It seems like an arbitrary boundary, like most boundaries, but I'm keeping it for consistencies sake.


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ToughDiamond
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04 Aug 2015, 4:16 pm

aspiesociologist wrote:
In theory if you don't close your browser, the survey will remain open for a week. However, because of the level of anonymity I've set on the survey, it doesn't record IP addresses, so once your browser window closes, there is no going back.
It was a bit of a prisoner's dilemma: strict anonymity and confidentiality because I'm dealing with "medical" information, or more stringent consent protocols which are quite demeaning to autistic adults, imho. I picked the strict anonymity. I'm sorry that doesn't allow folks to start and then stop without ending participation in the survey!

Thanks. In that case, what kinds of information do the questions want? The type of stuff I'd need to have ready would be "how long did you have to wait for your diagnosis?" - that kind of thing, times and places. It's been a while since my diagnosis, you see. And if I needed to consult my diagnostic report, it could take me some time to get to it, as I'm not at home right now. I take it there's no way of getting a look at the whole question set in advance?