Do you prefer "person with autism" or "autistic"? Let us know! Research participants needed!

[MacKenzie Smith]

I will definitely keep this in mind when I get into research for schooling. Certainly, I'll have to do some quantitative research, but I'll likely be more interested in the qualitative stuff.

I appreciate your insight, and I'll be thinking about how to develop qualitative rigor when I'm learning about research and how to design an effective survey. Thank you!

Just as a side note, if you are looking for articles or resources regarding qualitative data analysis, I recommend that you check out Braun and Clark (2006) work on thematic analysis!

 

[Magna]

Hello! Absolutely, I can post my manuscript to this thread once it is completed in a few months! Thank you so much for your participation!

There are several of us, myself included that did not understand the question about other/alternative words for autism in the poll. I don't remember the exact phrasing of the question, but I don't know what the intent of the question was.

 

[dragonfire42]

For those who have said they wish there was a cure for autism and if there was, they'd seek the cure as fast as possible:

Do you have significant issues related to your autism when you're alone?

I don't recall who said it, but an autistic person said something to the effect of only being "autistic" when they're around other people. They didn't mean they were literally autistic sometimes and literally NT other times. The meaning of the statement was that when they're by themselves, doing their own thing, living as they choose to live, they're perfectly contented or at least they're not ridden with the stress, anxiety or drain they feel when they're navigating in the NT dominated world or interacting with NTs. In short, they feel "normal" when they're not interacting with NT people and conversely they feel "abnormal" only when they're interacting with NTs.

How much of your wanting a cure has to do with the fact that you're in a minority living in a world overwhelmingly designed for the majority rather than you having complete inabilities to function in life in your own ways?

I agree there do seem to be two different categories of autistic people: Those that don't wish to change their neurology and those that do. Those that embrace their autism even with its challenges and those that wish they were NT.

I suppose most of my issue is that I cannot function in the society I’m trapped in the way that I am. But do I think the entire world should change just to suit me? Heck no.

I do have issues when trying to function alone, but perhaps I could deal with it if I actually had a place in society, something to give me motivation.

Basically, I get the impression that society isn’t going to change, at least in the way I would need within my lifetime, nor should everyone else have to go to extra effort to accommodate me, so the only solution would be for me to change.

I think of it more on an individual basis since autism can be so diverse, I quite deliberately never claim to speak for anyone but myself or any experiences but my own. I am not in any way meaning to suggest that anyone else should be “cured” or that autism is always a bad thing, just speaking for my autism and the way it affects me/my life.

For the record, I’m moderate, not mild/high-functioning.

 

[MacKenzie Smith]

There are several of us, myself included that did not understand the question about other/alternative words for autism in the poll. I don't remember the exact phrasing of the question, but I don't know what the intent of the question was.

Hi there! Thanks for your feedback, and I apologize for the confusion regarding that question! Our intention was to leave that question open ended to allow anyone to share their thoughts however they see fit. Some chose to write sentences, and others chose specific words to describe autism! The hope was that participants would have an open opportunity to share their thoughts/feelings about autism.

 

[gaffaglow]

It appears to only be for individuals with official diagnoses. There are only three options for where you received your diagnosis.

 

[zozie]

It appears to only be for individuals with official diagnoses. There are only three options for where you received your diagnosis.

@MacKenzie Smith You might miss out on a lot of really good insights if you only study officially-diagnosed autism, regardless of what identifiers people use. There are enormous barriers to an official diagnosis, especially for adults, so I'd recommend at least entertaining adding in an option for self-diagnosis.

Edit: Just my opinion, I don't mean to tell you how to do your research, I hope it didn't come across that way.

 

[SchrodingersMeerkat]

When people say person with autism it kind of makes it sound like autism is some sort of accessory like a handbag or something you would wear to a dance. "May I borrow your green autism?" "I found these autisms on sale" "Dwayne and I dun been collectin, deh autisms since a'fore ah weddin'."

 

[Magna]

I wish I would have written down a comment I saw from a Youtube video about autism a few years ago. It was something like: If you need to separate me from my autism (ie person-first language) in order to view me, respect me or acknowledge me as a person, maybe you have a hard time viewing me, respecting me or acknowledging me as a person the way I am.

 

[Wolfgangus Faldestolius]

I have a disability

I agree with that word, it's no shame to me; it's only "disorder" I don't do.

 

[Wolfgangus Faldestolius]

1. My Race And / Or Ethnicity isn't on the list. I insist on declaring myself to be Wholly Other not only because I refuse to be pitched against anybody by complexion * , but because many (at least) of my ingredients aren't on the list.

I always thought it highly normal to be diverse, and to be a minority within a minority.

(I am in the UK where races aren't compulsory anyway.)

{ * when younger I didn't look weather beaten }

2. I thought the survey designer had no grasp of autism symptoms that are core ones as distinct from maladjustments. (There is a crossover area like immature reflexes, which turn into the latter as one gains capability to control them).

3. Visually, larger writing spaces would be more inviting.

4. As to speech I went through phases of not speaking much, of talking muddled-up near rubbish (because what was in my head wasn't well structured), talking too loud, getting out of breath. People gave me a lifetime to improve and I have. This is mostly self taught with just the odd tip from someone occasionally. People are jealous of my vocabulary which does not equate with articulacy.

A professional who was looked down on by more haughty professionals said I used to get pragmatic syndrome. (My semantics are ultra sophisticated as it was always one of my zillions of special interests.) Anyway now that I'm almost 66 I get away with everything!

5. Please do stick around the forum mean time also.

 

[Wolfgangus Faldestolius]

I was given the idea of finding out the existence of this:

Mentoring | Grounded Theory Online

You can use the original Grounded Theory basis to prepare to decide on the structure of your survey.

You could choose a number of threads via the forum map here; then pick some books and journal articles.

Start with serendipity then make a small effort within time available, to flesh out any potentially awkward gaps.

Then base your self on the range of concerns and points of interest that crop up, especially from the autistic people them / our selves, to identify the subjects and scope and angle of your questions.

 

[Jordy]

I really dont care, to me autist, autistic or has autism are all the same

 

[4gottenLoreKali]

"Autistic person" is perfectly fine, as is "person on the spectrum". In my opinion, the whole person- vs. identity-first language debate is getting a liiiitle played. Personally, I favor identity-first as a matter of preference, and to negate how pathological autism is perceived by NT society. ("Disorder", "illness", "plague", "epidemic", etc.)

Speaking of pathologizing, what I do NOT appreciate is referring to autistic people as just "autistics". Yes, I prefer identity-first naming, but not identity-only. People with cerebral palsy don't exactly enjoy being called "spaztics", you think I feel any less dehumanized when people being refer to me as just "an autistic"?!

Autism forms a core part of my identity. It is by no means my whole identity though.