autism internal experience survey

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I have a survey to see what is the frequency of some of the characteristics of the internal experience of autistic people (eg 'find eye contact painful', 'think in pictures', etc) and how this relates to other characteristics of autism. If you're willing to fill it out, click below:

Survey Here

Hi Ettina,

I'm doing your survey now and finding that it asks some really interesting questions on areas that i haven't come across before.

However, there are a couple of sections that I'm really struggling with because the questions/statements don't seem to mesh with the rating systems provided.

For example, in the Executive Function section, there are negatively phrased statements like "Doesn't see a logical sequence; starts in the middle or at the end first" with the options being 'Above Average', 'Average', 'Below Average', 'Very Poor' or 'Performance Varies too much to say'.

On this question I'd like to indicate that I'm very logical so I assume 'Above Average' is the correct response. However that makes it sound like I'm saying that I 'don't see logical sequences' more than the average person.

I think I understand what the correct answers should be here, but it's bending my mind to have to keep adjusting the phrasing of each statement in my head in order to grasp which way I should go on the scale.

I'm having a similar problem on the next section e.g. "Doesn’t notice when face and hands are messy". I really really do notice when my hands are messy (yuck) so do I give myself a 1 as in I "don't not notice my hands/face are messy at all" or a 5 as in I "notice extremely so" assuming the 'doesn't' is sort of removed from the statement at this stage...? Urr? Um? Hmm.

I'm worried that I'm ruining your stats if I get it wrong and don't realise. Or that everyone will be tweaking their logic slightly differently.

However, I think this could become a really popular survey if it were republished with either the statements rephrased to make them neutral or the ratings replaced with the 'strongly agree' to 'strongly disagree' type scale. I'll finish what I'm doing now, but if you revise it I'd happily go through it again so make sure I've answered correctly.

Hope I haven't thrown a spanner in!

Thanks for your comments. I've changed the wording of those items to make it clearer how to respond.

If anyone wants to retake the survey with the new items, please just make sure to mention in the 'any comments' box at the very end that you have filled out the survey before, so I don't end up counting you twice.

In the life skills section - there are a bunch of questions that are "I know how to do ..."

How should we answer if we know all of how to do it and are prevented from doing what we know how to do because of other aspects of our disability.

For example - I know how to take public transit to get where I need to go, but that doesn't mean my disability doesn't interfere with me taking public transit. Similarly with cleaning and doing laundry.

I took this survey a day ago and also wanted to mention that a lot of the questions were tricky to answer because of wording. I think I also caught a spelling or grammar error, but that was a day ago and I don't remember where it was. Otherwise, I appreciate that it wasn't exactly the same as (what seems like) most autism surveys out there.

i have also done this test, but one question set is still a bit strangly worded.
i mean the set "Eight Pillars Executive Function Scale - Revised"
it asks how i am compared to neurotypicals on a scale of 'strongly agree ->strongly disagree'. if you ask me, this should be better fitted on a 'significantly better<->significantly worse' scale, considering the wording of the statements (which is how i interpreted and answered that set)

This seems aimed at children b/c of the focus on play. I also hate it when questionnaires ask the same question only worded a bit differently--what's up with that? This questionnaire is a bit long, I think. Maybe split it up?

Oddly enough, I love taking questionnaires!

Thanks!

Yes, I found a lot of the questions seemed to be aimed towards children. I suppose it is difficult to find questionnaires that are designed for adults.

Anyway I would be very interested in seeing the final results of your questionnaire.

My results:

Autism Spectrum Quotient - 37, autism cutoff 32

Saving Inventory Revised - 69, hoarding cutoff 30

Frontal Systems Behavior Scale - 145, executive dysfunction cutoff 90
Toronto Alexithymia Scale - 74, alexithymia cutoff 74

It's checking to make sure you're answering based on content, rather than drawing pretty patterns with the dots or saying 'agree' or 'disagree' to everything.

One or two inconsistencies in those virtually identical questions aren't a big deal, but if most are no more consistent than chance, that hints at invalid responding.

I filled out the AQ test and Alexithymia Scale according to the answers my parent and I had worked out together for a version of the same test that I had to take a few weeks ago for an ASD testing. So glad I kept a copy of my answers!

I wish there were options saying (expressive language) Have difficulty speaking and writing and (receptive language) Have difficulty understanding speech and reading. I didn't know what else to pick so I put nothing there, sorry about that.

Took the survey this afternoon. I enjoyed it. It was refreshing to find several questionnaires on there that I've never taken before. I get so sick and tired of taking the same old assessments. Snore.

Not happy.
Couldn't concentrate long enough to complete the survey.
Started recocnising meltdown sysptoms and needed to stop
Forgotten how to type now too, it seems.

So does this mean I'm more than twice as likely to be a hoarder?

And I suppose with an executive function far above 90 I probably really should be strapped into a wheelchair in public

Quite an interesting and intensive survey

i know i posted some feedback before, but something else just came up; perhaps you can put a reminder of the scoring scale halfway trough the long question lists; i noticed going back to see where the 'neutral' option was a few times (as troughout questionaires, and yours too), it varies between leftmost, rightmost and centre bullit for neutral

If you mouse over the choice bubbles it shows what that particular bubble is.