Research survey: Discover new presentations of autism

[August Lager]

Hi!
We are Henrietta J:son Eskelin and August Lager, master students of psychology at the University of Gothenburg, Sweden. This study is being conducted within the framework of a Swedish master's thesis under academic supervision.

To take part in the study, please follow this link:

Online Survey Software | Qualtrics Survey Solutions

“Samantha Craft's Unofficial List of Female Autistic Traits” is a compilation of observations illustrating how autism may present differently in females. This research aims to investigate how gender identity and the degree of autistic traits influence an individual's resonance with this list. To achieve this, we are seeking adult participants across all gender identities, ages, and neurotypes (autistic and non-autistic).

This survey is intended for individuals aged 18 years or older. Initially, you will be asked to provide your age and gender identity. Subsequently, you will be presented with Samantha Craft's list and asked to indicate which items resonate with your personal experience of being you. Finally, you will complete a measurement of autistic traits (or lack thereof). It is important to note that this scale is not able to decide whether you meet the diagnostic criteria required for any formal diagnosis. The estimated time commitment for this survey is approximately 40 minutes. You may take breaks and return to the survey later, provided you utilize the same web browser with cookies enabled. Data from incomplete surveys will not be included in the final data analysis.

Participation in this research is entirely voluntary. You may withdraw at any time without providing justification and without consequence. Should you choose to withdraw and later wish to participate, you will need to restart the survey from the beginning. To avoid this, pausing the survey is recommended.

Your privacy will be protected by presenting the results in a manner that prevents direct identification. All responses will be kept anonymous. Upon completion of the survey, your individual results will be made accessible to you. On the concluding page of the survey, you will have the option to print or download a document containing your score summary, our contact details, and information on how to access the final thesis publication. Data will be securely stored on the Qualtrics platform and protected from unauthorized access, with protocols in place to maintain participant confidentiality. No IP addresses will be collected. During data analysis, your anonymized results will be stored on a hard drive. Once the analysis is complete and the study has concluded, all data will be erased.


Thank you!

 

[UFO]

Why there always has to be questions where two different questions are combined? "Feels extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house but at the same time will often harbor guilt for 'hibernating' and not doing 'what everyone else is doing'" How am I supposed to answer to that when I would like to be only human in the world and feel no guilt about it?

Samantha Craft's Unofficial List of Female Autistic Traits
Total score (mandatory responses only): 66/144
Total score (optional responses only): 75/173

RAADS-R:
Total score: 155/240
Language subtotal: 6/21
Social relatedness subtotal: 89/117
Sensory/motor subtotal: 27/60
Circumscribed interests subtotal: 33/42

65-227: Suggested cut-off is 65, with 97% of all autistics above and 100% non-autistics below

 

[Hypnalis]

@August Lager

We know that ASD presents differently in females than in males, so there's possible value here.

On the other hand I know the expectation that it would not present differently in females is foolish.
And I know about the "Replication Crisis".
Replication crisis - Wikipedia

It's equally foolish to assume a study like this isn't being done with the intent to create a false result.

"The Movement" only walked back a small part of the obviously false "women = men in every respect" principle when non-feminist women started pushing back on the obvious and predictable "sport issue" /lol.

I'm sure you'll get responses ... but the real question is: "If you test the responders for randomness, will it come out random/unbiased?" If you're not sure of that, why bother sampling at all? The result will be useless ... and if that's likely, why not just make up the data to suit your objective - you'll be in good company /lol.

PSA: This is far from the first time I've mentioned the Replication Crisis here.

Science, especially the "soft sciences" has huge problem: you can no longer assume objectivity in the test / data collection phase.
At this point, it's on the researchers to:
A. Establish credibility
B Prove the validity of the data they collect

Annoying for someone doing their first real project? Yep. But don't shoot the messenger. You already know who created this situation, and why they did it.

Then again, it might bean opportunity: A huge number of people know what's be done in the (moderately) recent past. Knowing, or even better, developing, techniques to deal with past sins might be beneficial in future.

 

[Alexej]

I kept pressing the next page and was expecting to see a link to download my results as a pdf but I fell off the end of the survey and the results got lost to me. This was disappointing and I missed the place to register to see the results of the survey.

 

[Ivi]

I think I did this 2nd female autism test (RAADS-R) before the level 2 diagnosis. But the 3 levels of autism are of course based on the levels of support needs more than anything. But I just did both of them now again.
I didn't understand all of the concepts (words/phrases) in the questions though. Not because of a language barrier, as I express myself better in English than in my own language. Was non-verbal as a child. English was my special interest as a child and even today I use it more with most people around me because it's an easier language to express myself with to my family, and I talk with my husband and most friends in English (my old special interest) as they can't speak mine and I can't speak most of theirs. I have more linguistic difficulties in my first language. I only didn't understand all concepts in the tests because I can't grasp the difficult concepts/phrases/words easily as to what they mean. I don't remember an example phrase I didn't grasp from the test now. But I just guessed then what they could mean, so I did the tests fully. The difficult concepts usually are words like "cognitive" and similar complex words, I think one question there had that word too, and a some other questions had similiar "complex words" too.

My scores here:
Samantha Craft's Unofficial List of Female Autistic Traits
-Total score (mandatory responses only): 116/144
-Total score (optional responses included): 144/173

"Higher scores suggest more female autistic traits. However, Samantha Craft's List has of yet not been validated through any scientific study. Thanks to your participation we will be able to analyse to what extent the variance in responses to Samantha Craft's list is explained by variance in RAADS-R total score and gender identity. Or, simply put - is it really a list of traits specific enough to female autism."


RAADS-R
-Total score: 181/240
-Language subtotal: 19/21
-Social relatedness subtotal: 78/117
-Sensory/motor subtotal: 44/60
-Circumscribed interests subtotal: 40/42

 

[kriss72]

Samantha Craft's Unofficial List of Female Autistic Traits:

Total score (mandatory responses only): 133/144
Total score (optional responses included): 154/173

RAADS-RTotal score: 215/240

Who guessed, I might be autistic

 

[kriss72]

I kept pressing the next page and was expecting to see a link to download my results as a pdf but I fell off the end of the survey and the results got lost to me. This was disappointing and I missed the place to register to see the results of the survey.

I didn't see a place to register for the results, but they state the results of the survey will be available here: Masteruppsatser / Psykologiska institutionen

(The pdf download with your results were kind of hidden, as a link at the top of the initial "welcome" page you are returned to after the pdf was generated)

 

[August Lager]

I kept pressing the next page and was expecting to see a link to download my results as a pdf but I fell off the end of the survey and the results got lost to me. This was disappointing and I missed the place to register to see the results of the survey.

Hi Alexej,
Thank you for participating! I’m sorry to hear that you weren’t able to download your results. As kriss72 mentioned, the button to download the PDF is located at the top of the page where the summary of the entire survey is displayed. Unfortunately, Qualtrics doesn’t allow us to make this button larger or more noticeable. Since all responses are kept anonymous, we’re unable to locate your specific results and send them to you afterwards.

 

[August Lager]

I think I did this 2nd female autism test (RAADS-R) before the level 2 diagnosis. But the 3 levels of autism are of course based on the levels of support needs more than anything. But I just did both of them now again.
I didn't understand all of the concepts (words/phrases) in the questions though. Not because of a language barrier, as I express myself better in English than in my own language. Was non-verbal as a child. English was my special interest as a child and even today I use it more with most people around me because it's an easier language to express myself with to my family, and I talk with my husband and most friends in English (my old special interest) as they can't speak mine and I can't speak most of theirs. I have more linguistic difficulties in my first language. I only didn't understand all concepts in the tests because I can't grasp the difficult concepts/phrases/words easily as to what they mean. I don't remember an example phrase I didn't grasp from the test now. But I just guessed then what they could mean, so I did the tests fully. The difficult concepts usually are words like "cognitive" and similar complex words, I think one question there had that word too, and a some other questions had similiar "complex words" too.

My scores here:
Samantha Craft's Unofficial List of Female Autistic Traits
-Total score (mandatory responses only): 116/144
-Total score (optional responses included): 144/173

"Higher scores suggest more female autistic traits. However, Samantha Craft's List has of yet not been validated through any scientific study. Thanks to your participation we will be able to analyse to what extent the variance in responses to Samantha Craft's list is explained by variance in RAADS-R total score and gender identity. Or, simply put - is it really a list of traits specific enough to female autism."


RAADS-R
-Total score: 181/240
-Language subtotal: 19/21
-Social relatedness subtotal: 78/117
-Sensory/motor subtotal: 44/60
-Circumscribed interests subtotal: 40/42

Hi Ivi!

Thank you for your input and for participating! We understand that some of the words and phrases in RAADS-R and Samanthas list are hard understand or interpret. We wanted to keep both of them in their original form so that we really tested the actual list and not a edited version.

 

[August Lager]

@August Lager

We know that ASD presents differently in females than in males, so there's possible value here.

On the other hand I know the expectation that it would not present differently in females is foolish.
And I know about the "Replication Crisis".
Replication crisis - Wikipedia

It's equally foolish to assume a study like this isn't being done with the intent to create a false result.

"The Movement" only walked back a small part of the obviously false "women = men in every respect" principle when non-feminist women started pushing back on the obvious and predictable "sport issue" /lol.

I'm sure you'll get responses ... but the real question is: "If you test the responders for randomness, will it come out random/unbiased?" If you're not sure of that, why bother sampling at all? The result will be useless ... and if that's likely, why not just make up the data to suit your objective - you'll be in good company /lol.

PSA: This is far from the first time I've mentioned the Replication Crisis here.

Science, especially the "soft sciences" has huge problem: you can no longer assume objectivity in the test / data collection phase.
At this point, it's on the researchers to:
A. Establish credibility
B Prove the validity of the data they collect

Annoying for someone doing their first real project? Yep. But don't shoot the messenger. You already know who created this situation, and why they did it.

Then again, it might bean opportunity: A huge number of people know what's be done in the (moderately) recent past. Knowing, or even better, developing, techniques to deal with past sins might be beneficial in future.

Hi Hypnalis!

Thank you for responding and bringing up the replication crisis in psychology and other soft sciences. Using far too small samples or engaging in questionable research practices (such as P-hacking) has really caused problems with replicability and there have been too few incentives to actually perform rigorous replications. Brian Nosek among others have performed great work in the area of large-scale replications and I have hope for the future that we can become better as a field. At the same time, I agree with you that we still have a long way to go.

In this thesis we are limited in time and resources, and we will discuss the limitations of the study in the final paper. This study will not be perfect and will need to be replicated in other samples in order for us to be able to rely on the results.

I am aware that I have not responded to all your points but please let me know if you have any questions regarding the study or if there is anything else!

 

[August Lager]

Why there always has to be questions where two different questions are combined? "Feels extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house but at the same time will often harbor guilt for 'hibernating' and not doing 'what everyone else is doing'" How am I supposed to answer to that when I would like to be only human in the world and feel no guilt about it?

Samantha Craft's Unofficial List of Female Autistic Traits
Total score (mandatory responses only): 66/144
Total score (optional responses only): 75/173

RAADS-R:
Total score: 155/240
Language subtotal: 6/21
Social relatedness subtotal: 89/117
Sensory/motor subtotal: 27/60
Circumscribed interests subtotal: 33/42

65-227: Suggested cut-off is 65, with 97% of all autistics above and 100% non-autistics below

Hi UFO!

Thank you for participating! We understand that some of the questions might seem like they're combining two different ones and that this can make them harder to answer. However, we've chosen to keep the questions as they are so we can test the original version of the list without any edits. Thank you for the feedback!

 

[Hypnalis]

Hi Hypnalis!

Thank you for responding and bringing up the replication crisis in psychology and other soft sciences. Using far too small samples or engaging in questionable research practices (such as P-hacking) has really caused problems with replicability and there have been too few incentives to actually perform rigorous replications. Brian Nosek among others have performed great work in the area of large-scale replications and I have hope for the future that we can become better as a field. At the same time, I agree with you that we still have a long way to go.

In this thesis we are limited in time and resources, and we will discuss the limitations of the study in the final paper. This study will not be perfect and will need to be replicated in other samples in order for us to be able to rely on the results.

I am aware that I have not responded to all your points but please let me know if you have any questions regarding the study or if there is anything else!

You definitely get points for answering - I'm used to avoidance (arguably an Aspie trait /lol), but at least you're not hiding.

My issue is that I don't trust any data collection process that doesn't include ex-ante proof the that samples will be meaningful and the data representative.

The reference to "the crisis" is just a reminder that the trust is gone - I don't expect one project to fix it ....
... but I do expect to see evidence full and highly visible "defensive" transparency for the whole of the project.

A PITA? Yes, of course it is. But that's the price of "standing on the shoulders of giant liars".

FWIW, I suspect it's very difficult to get a good selection of ASDs. Self-selection from here certainly won't provide an unbiased sample. And while allowing non-ASD interested parties to participate will increase the numbers, they won't mix well with the real thing. Though it would be interesting to see if you could split them out of the complete data set post-sampling using statistical techniques

(Another separate group that will cloud the clarity of your data will be all the new fake ASDs driven by negative-clout-chasing "victimhood collectors" trying to add another factor to their list in their endless rush towards the bottom of the pile /lol).

 

[August Lager]

Thank you for all the replies and your participation!

The survey will close 6/12 at 16:00 GMT +1, so if you want to participate now is the time!

 

[Boogs]

I have to agree with @Hypnalis about concerns with using this method of sample self-selection. Apart from the fact that only certain types of autistic people would be engaged with a site like this, and further would engage with the test, would instantly risk a massive skewing of results I'd have thought, but worse I can't see what criteria could be applied to somehow fit it into a population sample that's representative?

That said I know little of the actual science and statistical methods used, so maybe this is already a working method, but it appears questionable on the face of it (for a laymen at least).

 

[Hypnalis]

@Boogs

If they take a issue seriously, they can correct for it. Naturally that lowers the apparent precision of the results, but without correction it was never really there: the "nicer-looking" results are, in practice, misleading.

OTOH most of the surveys we see here come from advanced students looking to doing some complete part of what's required to complete their degree. The mea's they're resource-constrained, and it's not easy for them to combine a good sample size with good management of any inherent sample biases.

On the other hand, there's a fair chance that anyone using these results will know that.
And nobody can reasonably expect a student to get actively involved in the conflict around the replication crisis. It's a reputation- and career-limiting move. IMO serious new entrants to a field (like ASD study) should get a pass on that

Self-selection bias is less likely to happen in the "hard sciences", and they tend to be a lot more open about inherent weakness in their experiments.

The great "Cold Fusion" drama is an amusing example of what happens when the process goes wrong, demonstrating yet again that when the range of values of the supposedly interesting data is below the precision of your measurement equipment, keep your mouth shut, improve your measurement gear, and run the experiments again

 

[Boogs]

Not all scientists are scientific?

It depends on the use of the publication I'd guess. A student completing their thesis is unlikely to be creating a paper that would have a real impact on autism studies/care/whatever. So as you say, they work with much more limited resources and I imagine are doing to demonstrate their mastery of the process, knowledge of what matters. e.g. they may not have a good enough sample, but they can explain in their thesis what it means and why that matters.

Someone doing research that's intended to possibly feed in to the whole area of study needs to be far more careful about these things, just like drug trials etc.

I presume hard sciences are things like physics and chemistry? With these your samples are instrument measurements mostly, and here the same process is needed but obviously with different mechanism.
As you said regards the cold fusion confusion!