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

[Trophonius]

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.

My interpretation is that they're looking for words that each of us personally associate with autism, rather than synonyms.

Such as harrowing, wretched, flummoxing.
Be creative.

In regards to what Magna and Wolfgangus pointed out, I need to differ and state that I personally consider autism a disorder, and one that needs to be cured or treated. Some people insist on pushing ASD as a condition and identity —plenty of these online and within real-life ASD communities—, I find this disheartening, as people who say this speak from a rather privileged position within the spectrum.
I don't have a "condition", I have a disability. And it is one which causes me a lot of stress, as I have failed to do many things I'd have done just fine otherwise. If there were a treatment, or absolute cure, I'd go for it in a heartbeat.

 

[Alexej]

What is IEP?
It may be term used in the US but it is not common currency in the UK

 

[zozie]

What is IEP?
It may be term used in the US but it is not common currency in the UK

Individual Education Plan, for kids in school. My kids will be getting them when they are formally evaluated for autism and ADHD, respectively. It helps the teachers and students work on an education plan that meets the needs of the student and also the graduation requirements.

 

[zozie]

This is a good survey! My youngest son recently had his school speech therapist tell him that if he didn't "score low enough" on the evaluation, then he wouldn't get help for his stutter. The school psychologist, in turn, insisted that my son's stutter was due to nerves, which is a myth. So I'm glad you're looking to be more inclusive. I'm glad also that your survey has more than just multiple choice, so we can share our own voices.

As it stands, I will have to get my son evaluated from a private company, which is money that I don't have. So for right now, what we do is have conversations at home about how the school shrink is wrong, and as soon as we can afford it, we'll get him seen by a SLP of quality, not someone intent on making threats about withholding help. My son actually came home from school and asked me if he should fake his assessment so he could get help. No child, no person, should ever have to feel like they have to pretend just to be seen. Especially because they won't actually be seen if they're pretending so it's a futile move, anyway.

I filled out the personal one, but if your survey is still open by the end of March, I may be able to fill out one for my high schooler, too. They'll be expecting results of their autism evaluation by that time.

I'm hoping to attend grad school, too, and the IRB scares me a little bit! I hope your experience with them has been okay so far.

 

[Finder]

My interpretation is that they're looking for words that each of us personally associate with autism, rather than synonyms.

Such as harrowing, wretched, flummoxing.
Be creative.

In regards to what Magna and Wolfgangus pointed out, I need to differ and state that I personally consider autism a disorder, and one that needs to be cured or treated. Some people insist on pushing ASD as a condition and identity —plenty of these online and within real-life ASD communities—, I find this disheartening, as people who say this speak from a rather privileged position within the spectrum.
I don't have a "condition", I have a disability. And it is one which causes me a lot of stress, as I have failed to do many things I'd have done just fine otherwise. If there were a treatment, or absolute cure, I'd go for it in a heartbeat.

I was kind of joking, but it is a rather NT type of question. I really don't think of my autism in nice definitive terms.

I actually pointed out your point about our community. Compared to many with ASD, my disorder is not severe--ASD-1. I actually commented on this as the question were really focused on personal opinion, rather than more general questions about the disorder. I personally do not need a cure, but others really need some important interventions. I think the question would have been better if we were asked our opinion on a cure for ASD, rather than specifically whether I personally wanted one.

I am always happy to help those that want to help us, but I didn't think this survey was very well thought out. Both in terms of the information collected, but also in the analysis--broad open-ended questions need a lot of coding which can become very subjective as well as out of control with deviations in the answers.

 

[Bolletje]

I filled out the survey

 

[Tom]

Hi and good luck with your research. Many of us here are only self-diagnosed. It is a common situation, especially among older folks. ASD1/HFA was not widely recognized (or at all) until later in our lives and not all seek a diagnosis at that point. And even younger or middle aged folks may decide not to.

Anyway, I would have filled out the survey but it did not seem to have an option for self-diagnosed.

 

[Joshua the Writer]

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!

But are you who you say you are, that's my question.

 

[Joshua the Writer]

It's kinda weird that you made an entire 4 page survey in order to ask just a single question that could have been more easily done via this site's poll feature, but that's just me.

 

[zozie]

I am always happy to help those that want to help us, but I didn't think this survey was very well thought out. Both in terms of the information collected, but also in the analysis--broad open-ended questions need a lot of coding which can become very subjective as well as out of control with deviations in the answers.

I won't speak for this person, but there's a strong argument for subjective data as part of a qualitative study. It doesn't fit into a neat little box, and so could be seen as problematic if that is the aim, but qualitative research seeks to see what gets left out when we divide data into boxes to begin with. As such, open-ended questions have no right or wrong answers, but are gathered because of their variance and deviations.

On the other hand, how someone interprets qualitative data does beg some questions about coding. But then, what is the alternative?

 

[Finder]

I won't speak for this person, but there's a strong argument for subjective data as part of a qualitative study. It doesn't fit into a neat little box, and so could be seen as problematic if that is the aim, but qualitative research seeks to see what gets left out when we divide data into boxes to begin with. As such, open-ended questions have no right or wrong answers, but are gathered because of their variance and deviations.

On the other hand, how someone interprets qualitative data does beg some questions about coding. But then, what is the alternative?

I absolutely agree. I am a social science analyst. But you also need to a balance in order to figure out your population. And when the framing of questions are too broad, then you are going to come out with broad interpretations to those questions. This is why survey design is so important. And even qualitative data need quantitative rigor. One random comment, no matter how evocative, it not significant. And significance drops with ambiguity in the questions.

 

[dragonfire42]

I started to do the survey but stopped at the last page because I realized that I have so much else going on with me that I really don’t know entirely what’s because of the autism and what’s because of something else, and my brain kind of shorted out when trying to answer those questions.

As for the question in the title, to me, asking me if I prefer being called “autistic” or “a person with autism” is exactly the same as asking me if I prefer being called “brunette” or “a person with brown hair.” I have absolutely no emotional connotations whatsoever with either term, and both are accurate. I do find it a bit pretentious, though, when people without autism make a big deal in some way of using the term “person with autism” no matter what, though (even sometimes going so far as to “correct” someone who refers to themself as “autistic”).

(In response to another part of the survey) For me personally, autism is absolutely a disability, no question about it. I’ve always been jealous of people who can even attempt to claim otherwise about themselves. Seems to me like I got much of the negative and neutral aspects of autism without any of the good. If there was some sort of “cure” or something (I don’t think any one thing exists that would work for everyone, but for something that was guaranteed to work on me), I would take/do/whatever it in an instant. But even though it’s clearly a detriment to me (at least in the society I’m trapped in), I have no negative feelings toward it. Basically, it just is. I felt the same way about having Hodgkin’s lymphoma last year, I really didn’t feel anything negative about having it, it was just the way things were and I had to deal with it.

I think that covers the main parts I was able to complete, though I will answer any further questions to the best of my ability

 

[zurb]

Nope, neither. Aspie and Autie are both preferred terms.
How come we don’t get the choose the terms we self identify as?

 

[Alexej]

I was thinking about person first or description first.

I am an autistic person, not an autistic.
To me, as I was thinking about it today, I was feeling that autistic is OK as an adverb - ie something that describes or modified another word.
To say I am an autistic feels to me to be saying that my whole being is summed up in that word - autistic. I dont like that

However, I am still thinking this one through so my opinion may change.

 

[Alexej]

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.

Good morning MacKenzie
Is it possible to post the output of your research here, since we have contributed to it?

 

[zozie]

I absolutely agree. I am a social science analyst. But you also need to a balance in order to figure out your population. And when the framing of questions are too broad, then you are going to come out with broad interpretations to those questions. This is why survey design is so important. And even qualitative data need quantitative rigor. One random comment, no matter how evocative, it not significant. And significance drops with ambiguity in the questions.

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!

 

[Booknerd515]

Morning, I took the survey recently.

As someone who's completed a lot of surveys regarding medical conditions, it was very rare to see in the beginning of it that the survey may cause fatigue. Hardly anyone writes that, it made me surprised to see it included.
I am an adult with autism and I completed the survey without help. I did like that there was an option at the end asking if one completed the survey with help. Not all medical information surveys have that and I have needed to get help with them because some things they ask are rather complicated that I may not know all of.

I put my gender preference as Non-binary because I've been questioning my gender lately and as of right now I don't feel female so that's why I put it as that.

 

[Joshua the Writer]

Fine, I completed the survey.

 

[Magna]

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.

 

[MacKenzie Smith]

Good morning MacKenzie
Is it possible to post the output of your research here, since we have contributed to it?

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!