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.
17 Jul 2015, 10:12 am
