Autism and self identity research - online survey

[Rcooper]

Hi there,

We are looking for people with Autism to complete about 15-20 minutes worth of questionnaires for our research into self identity in people with Autism. We were just wondering if anyone who uses this forum would be interested in completing these questionnaires?

Here is the link to the study: https://bathreg.onlinesurveys.ac.uk/identity-in-autism-an-exploration-of-content-and-impact

Here's the official info:
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Project Title:
Identity in Autism – an exploration of content and impact.

Invitation:
You are invited to take part in a research project. The project aims to find out what people with Autism think about their identity as a person with Autism.

Who is conducting this research?
The project is being conducted by psychology researchers at the University of Bath. It is supervised by two qualified clinical psychologists.

Who can take part?
People aged 16 or older with Autism. We are defining the word Autism to include ASD, Asperser’s Syndrome, High Functioning Autism, Atypical Autism, PDD and PDD not otherwise specified.
Unfortunately this project is not open to people aged 15 or younger.

What will happen?
The study will involve completing six questionnaires online. These will ask you questions about your Autism, your general health and your wellbeing. The questionnaires will take about 15-20 minutes to complete. Your answers will be kept anonymous and confidential.

Benefits and risks:
We cannot promise the project will help you directly but the outcomes of the research project may help inform research and healthcare in the future. We do not expect that there will be any major disadvantages of taking part in the project. However some people might find it difficult to answer questions about their wellbeing.

We have had permission from the moderators to post this link - thank you for this. If you have any questions about the project, please email the research team at [email protected]

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Thanks in advance for your help!

 

[AGXStarseed]

Just a little notice for future reference; the majority of us on the spectrum prefer to be referred to as "Autistics" rather then "People with Autism" as we see our condition as been part of our identity.
To give you another example, if you meet people who are homosexual you don't refer to them as "People with gayness".

Just a heads up.

 

[Rcooper]

Hi AGXStarseed

Thank you very much for letting us know that, that's really helpful.

Thanks

 

[strugglewithin]

I don't understand the time frame given. Is it 15-20 minutes total for all of the questions or each 15-20 minutes for each part?
Are these questions written so we have to guess or infer the meaning or are they more precise direct questions?

 

[Kari Suttle]

Invitation:
You are invited to take part in a research project. The project aims to find out what people with Autism think about their identity as a person with Autism.

I have a question as well. Is it open to only those who are formally diagnosed as having some form of autism, or is it also open to those of us without a diagnosis who identify as having autism? Plenty of us on here are self-diagnosed rather than professionally diagnosed.

 

[Kari Suttle]

Just a little notice for future reference; the majority of us on the spectrum prefer to be referred to as "Autistics" rather then "People with Autism" as we see our condition as been part of our identity.
To give you another example, if you meet people who are homosexual you don't refer to them as "People with gayness".

Just a heads up.

As much as I appreciate the thought, personally I don't care which way I'm referred to. Some might, some might not. The term 'autistics' IMO implies that its apart of my identity which it is even if I've yet to see anyone about getting a diagnosis. However, I also don't mind the term 'people with autism' either because it implies I am more than just the form of autism that myself and my family think I have. The latter option is the politically correct option, as well, so the OP was correct in using it.

 

[strugglewithin]

About 20 minutes total for those who didn't understand the reference to time they were implying.

 

[clg114]

I took the survey, I hope it helps in some way.

 

[Suzanne]

I have just completed it, but a bit confusing, because most seem to repeat themselves.

 

[Judge]

I have just completed it, but a bit confusing, because most seem to repeat themselves.

A method to the madness. Repetition and redundancy is a way to establish definite patterns and conclusions within more complex data that often involves more than a conditional yes or no response.

 

[clg114]

I have just completed it, but a bit confusing, because most seem to repeat themselves.

I noticed that also. A lot of the questions were repeats of earlier questions, just worded differently. I just answered the same on all of the repeated questions.

 

[DogwoodTree]

Does anyone else have trouble settling on specific answers when the questions seem so general? Like...trouble with stressful events. What kind of stressful events? An emergency situation...I usually handle those really well. Delayed emotional processing helps me not get emotionally tangled in events like that, because I don't feel the emotions until later.

But a difficult conversation with someone I experience as hostile towards me? Or going into something new or highly uncomfortable, like seeing a new doctor? Not so much. Those are very stressful, and I always look back and think, what in the world was wrong with me? Why couldn't I think clearly in that situation?

 

[Astroganga]

For those who haven't done it, it seems to be open to both formally diagnosed and self diagnosed people, it asks some questions to do with that at the end.

 

[Crossbreed]

Did it, but the questions seemed a bit narrow.

 

[Rcooper]

I have a question as well. Is it open to only those who are formally diagnosed as having some form of autism, or is it also open to those of us without a diagnosis who identify as having autism? Plenty of us on here are self-diagnosed rather than professionally diagnosed.

Hi, thanks for your question - anyone who identifies as having autism is welcome to take the survey, so yes that includes people who are self-diagnosed. Thank you.

 

[Rcooper]

I don't understand the time frame given. Is it 15-20 minutes total for all of the questions or each 15-20 minutes for each part?
Are these questions written so we have to guess or infer the meaning or are they more precise direct questions?

Hi, sorry for not replying to your questions sooner, but I see you have taken the survey now - thank you very much for this.

 

[Rcooper]

Thank you to everyone who has completed this so far - we really appreciate your time and help with this research. Dogwood Tree and Crossbreed - thanks also for your feedback about the questions, we have made a note of that for future surveys. Judge - yes that's exactly the reason behind the repetition - I appreciate in can be frustrating to answer similar questions though so thanks to you all for doing so.

 

[Crossbreed]

...Crossbreed - thanks also for your feedback about the questions, we have made a note of that for future surveys...

Even though I very much care for my LFA family members, not all of us think that Aspergers/neurodiversity is the same condition as LFA (even going back to Dr. Lorna Wing). There is even evidence that LFA is a brain-injured form of Aspergers. So to the questions about relating to other autistics, I strongly relate to other Aspies, but it's learn-as-I-go with my LFA children (with occasional similarities). Their cognitive deficits are striking. (Compare left-handedness with no-handedness...)

 

[Bellatrix]

Just a little notice for future reference; the majority of us on the spectrum prefer to be referred to as "Autistics" rather then "People with Autism" as we see our condition as been part of our identity.
To give you another example, if you meet people who are homosexual you don't refer to them as "People with gayness".

Just a heads up.

The "majority of us"? Since when? Asperger's Syndrome is something I have; it is not who I am, I am not defined by it, I am so much more than it.

 

[NtNoWay]

As much as I appreciate the thought, personally I don't care which way I'm referred to. Some might, some might not. The term 'autistics' IMO implies that its apart of my identity which it is even if I've yet to see anyone about getting a diagnosis. However, I also don't mind the term 'people with autism' either because it implies I am more than just the form of autism that myself and my family think I have. The latter option is the politically correct option, as well, so the OP was correct in using it.

I get what you are saying in the not being all of my identity, let me add this to your thinking. Would you say your a right or left handed, or would you say a person with right or left handedness? It may seem silly but would you expect people to consider the total of your identity to be about handedness?

Also personally, I feel like the with autism has an implication of an added extra, something that can be put down or removed etc. But each to their own preference.