New Researcher - How do I talk to people?

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I'm a sociology grad student studying social reality and autism spectrum disorders. I have family members and friends with AS and HFA and I'm interested in studying ASD from a symbolic interactionist perspective. I think that autistic people are natural students of social interactions and use the information they gather about neurotypical behaviors to better live in NT society (to cope and to "pass").

I have met several people lately who I would love to include on future studies, but I don't think they know they have AS. I know another man who has autism but we're not friends and I don't know how to approach him.

I have asked professors at my university how I am supposed to talk to potential research subjects, but they don't understand individuals with autism. I am afraid to approach people because I don't want them to think I do not respect them or think they're ret*d or want to cure them. If I walk up to someone with autism all jockular like I would a NT subject I am afraid this is what the autistic person would think.

When I try to talk to the people at my university about what I am specifically doing, they misunderstand because they are Autism Speaks-type of thinkers. I am not interested in this! I want to find out what is already working for people with autism because it plays into my main interest of the falseness of social reality.

Sorry for the long post. Any suggestions would be very much appreciated.

"Hi I am ______, I am studying the xyz of Autism so that I can better understand people with ASDs and communicate them in the way that they communicate instead of forcing my form of communication on them. This is because people with ASDs are a wonderful overlooked people group who are frequently marginalized and abused when people insist that they need to be 'fixed' so that they fit in to the NT world better. Would you be willing to help me in this by participating in my research? All that you would have to do is _______. The harms are ____ and the benefits are ____" (although I assume the harms are none beyond time spent and the benefits are to improve future NT/ASD relations. If it might increase anxiety list that as a harm.)

At least I hope that the bold-ed part is sort of why you are doing your research.

If the statement above does not fit your goals (after being modified for your research question and thesis) you might want to think about why you are doing what you are doing.

Good luck.

A couple things occur to me.

The first is that under almost any circumstances you would have to be very upfront about your interest from the start. I don't think anyone would appreciate finding out after you'd become friends if you had an ulterior motive all along.

Also, ask people in relative privacy (at the very least not near anyone they know). If it isn't already known by most people that they have AS, it often means that IF they are aware of it they don't want it generally known, so asking when other people may overhear would be extraordinarily unwelcome. If they don't know, they probably won't like the question (there is no way around that).

I would also point out that finding people who can offer things that are "already working" is actually a pretty tall order. You are rather unlikely to find them at a university, as many find college extremely difficult (see school section of WP). At best most will have working hypotheses, but still be struggling, although there is of course an enormous amount of variation.

I think you might be better off trying to ask some the WP members who have more advanced coping skills (especially some of the older ones). I don't know if you could meet many in person (it's my impression is that there aren't many other members in the mid-Atlantic US) but it's still the best way to get in contact with people who match your needs. Also, for statistical purposes many WP members have taken online tests and posted the results, which might serve as approximate estimates of how autistic they are, at least compared to each other. It's not really polite to make those kinds of comparisons between people around here, but if you were (hypothetically) finding an inverse correlation between "working strategies" and AS traits you would at least have grounds to suspect there was an issue that might require revaluing some of the data you'd collected.

nebrets and Pyrite-

Thanks for your thoughtful replies. They really helped me focus.

nebrets - I guess what I'm most interested in that might also be helpful to aspies and also lower spectrum folks is A) discrimination by NTs toward people with ASD, especially in the workplace, and B) the phenomenon of "passing." I have noticed that people on the spectrum are often mistrustful of NTs in general and I feel like my researcher role would make me more suspicious. I like your wording and agree that I need to be very up front with what I'm doing and what possible benefits/harm it could cause. Some harm it could cause is to make participants hyper aware of their interactions- they may think they were doing well and then start to second guess themselves.

Pyrite - the passing is the very complicated problem that I think you were speaking to. I have recently made friends with some people in college who I am very sure are high on the spectrum but are either passing or don't know they have AS. It would be unethical and also just plain rude/mean to bring it up, so I just let it go with all but one girl who I'm better friends with. But I don't think it would be ethical for me to ask a friend to be a "subject." Maybe you're right about concentrating on recruiting online participants, such as from WP. I have a black cousin who contacted a branch of our family who had been "passing" as white for several generations and they were very upset that he "uncovered" them. Maybe it would be the same way if I contacted people in real life who were passing as NT.

Thank you again for your replies.

"Hi, how's it going?"
Ok, the rest of the conversation may be a little trickier than that... Just don't take simple responses or lack of eye contact as meaning he's not interested. If you think that might be the case, ask him if he wouldn't mind talking to you for a few minutes. And expect a 100% honest answer.



Are we talking classic Autism, or AS/HFA? Many individuals with classic Autism would also fit the criteria for MR, so some of the same approaches/strategies may work. But keep in mind that language difficulties may obscure their actual intelligence level.

In the case of someone with AS/HFA, I'd suggest approaching them similarly to how you would approach anyone else. Just be sure to explain what you're asking for in a clear, well-organized fashion. Visual materials may be helpful. Jocularity is fine, but you may want to avoid using sarcasm.

You might want to clarify which group you'll be working with, or if you have a minimal IQ requirement, as there are very dramatic differences in our ability to learn and adapt socially.

Hi ScubaSteve-

This guy has very fixed interests and seems to prefer asking other people questions as opposed to them asking him questions. I THINK he has classic autism, but you can see some AS traits in there. I believe that he has a lot of trust issues and may have been institutionalized when he was younger. I have noted some NT jerks in my neighborhood making fun of him because he looks like Albert Einstein, wears a rope belt, and does stuff like drink out of milk jugs in the dairy aisle. The level of information he has been collecting about class theory and criminology make me view him as a colleague, but I have observed that "NT-style" conversation is unpleasant to him. On the suggestions of my ex-husband (who has AS), I have been attempting to show myself as someone interesting and non-threatening by making statements and observations to no one in particular when I know he can overhear me.

I have learned from my university that I will also need to gain IRB (ethical review board approval) before studying him, but that still doesn't solve my problem of how to talk to someone who is one click above non-verbal, yet is very, very intelligent.

That sounds like something entirely different, actually... And I wonder if your husband has a theory about it, because the advice he gave doesn't seem to relate to AS, either.

It's hard to tell without meeting the person though, so it is also possible I just have the wrong impression.

I wasn't sure if anyone was interested in this, but I thought I'd post an update.

My isolated research topic is this: My working hypothesis is that no one (ASD or NT) naturally thinks of themselves as an "other". NTs naturally think of themselves as part of a group, or herd, and people on the spectrum tend not to. Further, I think that people with ASD naturally tend to view NTs as a "herd of others." With prolonged social exposure (and discrimination by NTs), people on the spectrum learn to see themselves as an "other" and understand that they have to "fit in" to survive in society.

I understand that I could be wrong about these things. I need to conduct an actual study for a number of years to investigate these points and my hypotheses could change as I continue to learn from people.

What I want to know from the autistic community (who would be my future research participants) is: 1) how does one cope with being in NT society, especially with new attempts to be "cured" or "helped", versus older attempts to "deal with" autism and 2) how does one learn to "pass" as NT, and what is specifically involved in this?

I hope that my research will help the autistic community by bringing awareness to discrimination and oppression of people with different social interaction and communication styles. I think that it is interesting that the NT community repeatedly does not see that the problem is the "herd" mentality, not the autistic community needing to become NT. I think that by bringing awareness to this problem it will help ongoing efforts to change negative opinions about autism.

******

Also- through hanging around at the 7-11 and continuing to talk in front of the very interesting autistic man that I wanted to approach but didn't know how to talk to, I discovered how he communicates. HE approached ME and asked me rapid fire questions two days in a row, all about different social issues. Each conversation lasted from one half to one hour and I was highly complimented that he chose to speak to me. He prefers to communicate almost entirely through him asking questions and the other person answering. By being respectful to him of his sensory issues and answering him thoughtfully instead of making jokes (some people make jokes to avoid talking about uncomfortable topics with him) I got to enjoy some riveting conversations with a brilliant person!