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

Discussion in 'Autism Spectrum News, Events and Research' started by MacKenzie Smith, Feb 13, 2021.

  1. MacKenzie Smith

    MacKenzie Smith Active Member

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    Researchers in the Speech-Language Pathology (SLP) department of Midwestern University are conducting a survey for individuals in the autistic and autism communities.

    Students and adults (ages 18+) with autism and parents or caregivers of autistic individuals are all welcome to complete this survey. If you would like to participate, you may click on the links below to access your survey. This short online survey will ask questions regarding your demographics, preferences, and experiences as a person in the autistic/autism community.

    Please see the study information at the beginning of the survey and feel free to reach out to me with any questions.

    If you are a parent or caregiver of a person with autism/autistic person, click here.

    If you are a person with autism/autistic person, click here.

    MacKenzie Smith, B.S.
    Student Investigator
    Speech-Language Pathology
    [email protected]
     
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  2. Thinx

    Thinx Well-Known Member V.I.P Member

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    I get a message saying it's an unsafe connection.
     
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  3. MacKenzie Smith

    MacKenzie Smith Active Member

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    Oh no, I'm sorry for the technical difficulty! Does it give you the option to continue or will the page not open? I will attach a new link for you to copy and paste, but you might have the same message pop up. If you continue to have problems with accessing the link, shoot me an email at [email protected] and I can send you the link on there! Thanks for your interest!

    Parent link: https://redcap.midwestern.edu/surveys/?s=D9MWAYHM3J

    Individual link: https://redcap.midwestern.edu/surveys/?s=MD9WHTNLY7

    - MacKenzie
     
  4. Sapphire K

    Sapphire K Autistic Demigirl! (She/They) V.I.P Member

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    I have one question for you: are you legit?

    Also, this site has a poll feature. Couldn't you just use that?
     
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  5. MacKenzie Smith

    MacKenzie Smith Active Member

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    Hi there!

    Yes, I assure you that I am a real person! I am a Master's student from Midwestern University who is conducting this survey as part of my thesis research project. Feel free to email me if you have any questions! I will also post our recruitment flyer as well.

    Have a great weekend!
     

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  6. OkRad

    OkRad μῆνιν ἄειδε θεὰ Πηληϊάδεω Ἀχιλῆος οὐλομένην V.I.P Member

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    Are you here just to poll us or to get to know us?
     
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  7. Skittlebisquit

    Skittlebisquit "..experience moments of happiness."

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    That feature makes the text very hard to see, it is i believe intended for another purpose, than the one you are using
     
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  8. MacKenzie Smith

    MacKenzie Smith Active Member

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    Both! I work with students in the autism community as a speech therapist, and I’m hoping to learn more from you all so I can be a better, more inclusive SLP. Participation in this survey is, of course, completely optional so please do not feel obligated to participate if you would not like too
     
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  9. Skittlebisquit

    Skittlebisquit "..experience moments of happiness."

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    Are you offering compensation to participants?
     
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  10. MacKenzie Smith

    MacKenzie Smith Active Member

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    Thanks for your question! There is no compensation for participating at this time.
     
  11. MacKenzie Smith

    MacKenzie Smith Active Member

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    Thanks so much for the feedback, I didn’t realize! I’m new here and still learning the ropes of the forums
     
  12. Skittlebisquit

    Skittlebisquit "..experience moments of happiness."

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    What means may we have to corroborate your identity? Do you ever pay people to participate in a study, or is it against the rules?
     
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  13. MacKenzie Smith

    MacKenzie Smith Active Member

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    You are welcome to call or email me if you would like to chat some more and learn more about myself and the study! I will post an study info sheet with more information as well. For this study, we were not able to provide compensation due to funding (even though I would have loved too). Some studies do offer compensation, but it typically depends on lots of factors!

    -MacKenzie
    (815) 245-1435
    [email protected]
     
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  14. MacKenzie Smith

    MacKenzie Smith Active Member

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    Here is more study information for those interested!
     

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  15. Magna

    Magna Well-Known Member V.I.P Member

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    I don't have a problem with someone choosing to use person-first language. I don't for myself. I'm autistic and proud of it. I do have a problem with people wanting others to use person-first language to refer to their own autism.

    I also find that generally people that do use person-first language when referring to autism are:

    1) People who are not autistic themselves and therefore don't have a right to try to mandate such things. The autistic community is fine as it is in figuring out what works for us in this regard and we don't need outside "advocates" on our behalf to "fight for us" on this language issue.
    2) People who believe autism is a problem to fix or an affliction that someone has that should be cured. "You're a person with [ something ] (and that "something" is bad).

    Anyone who knows anything about autistics/Asperger's knows that autistics/Asperger's consider it to be a serious affront to their person if someone attempts to force or shame them in relation to their thoughts or their speech, .
     
    Last edited: Feb 13, 2021
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  16. Fino

    Fino Alex V.I.P Member

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    I filled it out! It was kinda fun! And maybe there's just something wrong with me, but I disagree that it's short. :eek:
     
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  17. Trophonius

    Trophonius Well-Known Member

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    Well, it wasn't long either. But if it were, not a lot of people are going to complete it if the opener is "Come here my fellows, complete my excruciatingly long survey!"

    When you mean no compensation, do you mean no monetary compensation, or no compensation at all?
    I could do with a new kettle.
     
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  18. Finder

    Finder Active Member

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    Completed it. I did not understand the question, what words do you use to describe autism. How many words are there? Autism, ASD, Autism Spectrum Disorder, Asperger's, Aspie, classic autism. It is not that hard.
     
  19. N2k12

    N2k12 Active Member

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    i think the term autistic is fair.
     
  20. Wolfgangus Faldestolius

    Wolfgangus Faldestolius Little notes from an armchair

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    I don't mind "man with autism" or "man with Asperg. Synd." or "autistic man" or "Asperger" or "Aspie" or "autie". (I usually like a physical condition that came on in early middle age to be acknowledged more prominently - or indeed "average" or "mainstream" or "individualist" or "traditional radical" or "non fogey" etc etc)

    I don't like just plain "autistic" as adjective on its own.

    An inspiring autistic lady I met agreed with me that I'm an "aspie-autie" - am both sensing and analysing, by bucket loads, at the same time. But till I got my (semi self) diagnosis I tried to suppress both sides out of fright.

    MacKenzie, I shall look at your materials after breakfast.

    By the way t.w.i.m.c, ASC is NOT a "disorder", it's a "condition". We're in condition thank you.

    To me, disability terminology is not a claim, it's merely one of myriad overlapping ballparks, denoting normal ways of being normal (seeing as my age group apparently also gives me leeway nowadays), similarly as my complexion can be put down to weatherbeaten (sedentary variant) rather than the sallow I was at school.
     
    Last edited: Feb 14, 2021