You can help to develop Autistic Community in Ukraine (research survey)

[Snapshot]

Hello everyone!

My name is Maksym Liapchenko and I’m from Ukraine. My wife, Kateryna (Katherine) is self-diagnosed. We are working towards getting an official diagnosis but it is extremely hard to receive here in Ukraine. Diagnosis of autism in adult people is super rare and specialists are truly hard to find.

Currently my wife is pursing her Master's degree in psychology and working on her thesis "Social Competence of Adults with Autism Spectrum Disorder: Challenges and Strategies for Integration into Public Life"
As a part of the thesis she is conducting a survey that I want to invite you to take a part in
Link for the survey - Social Competence of Adults with Autism Spectrum Disorder: Challenges and Strategies for Integration into Public Life
It will take you ~30 minutes to complete.

The targeted population of the research are autistic people (self-identified or diagnosed) 18+ years of age. However, the study requires a control group of people who do not identify as an autistic person. So, I encourage everyone to participate.The study is anonymous, and the information collected will be deleted after the thesis is defended.
You can contact me anytime via PM.

The goal of the study is to demonstrate experiences the autistic people have through their life to the broader population.
Ukraine is not very inclusive place for autistic people and we want to change this.

I'm open to any questions you have. You can also reach out if you want to share your experiences as an autistic adult beyond the survey.
I’ll be active on this thread daily to answer any questions you might have!

Thank you!

 

[Jumpinbare]

Done

 

[Snapshot]

Done

I very appreciate it! Thank you!

 

[Misty Avich]

Done.

 

[Cutesie]

There are many questions in the survey that don't have the correct choice for me. How should I approach them?

 

[Snapshot]

There are many questions in the survey that don't have the correct choice for me. How should I approach them?

Hello!
Let’s say that set of questions about parenting does not apply to you - for all of the questions related to that you can reply “no”.
If you have more specific example, please let me know.

Thank you!

 

[Cutesie]

It's the same on all such screenings. Ask other autistics and they'll tell you the same. I'll give a few examples:

I like to be close to people.
I like to keep my distance from people

The answer is "both". It changes based on my current mood.

I tend to think of an activity I want to do and then find somebody to do it with
I tend to arrange to meet somebody and then think of something to do.

It's rather rare for me to meet up with people. I have to answer hypothetically and feel like a fraud when doing so.

If I moved to a new area, I would put more effort into staying in touch with old friends than making new friends.
If I moved to a new area, I would put more effort into making new friends than staying in touch with old friends.

I don't have friends. The only person that I've considered more than an acquaintance as an adult now lives in a different state. There are so many questions here about a relationship that barely exists for me.

The biggest problem is that so many of such questions can be answered with "both" or "neither". I'm an extremely complicated person, who fits into multiple personality types.

Again, it's not that it's impossible for me to pick one. It just doesn't make me feel good, because it's not accurate.

For those interested, here is a thread in which we discussed this issue.

 

[Snapshot]

It's the same on all such screenings. Ask other autistics and they'll tell you the same. I'll give a few examples:

I like to be close to people.
I like to keep my distance from people

The answer is "both". It changes based on my current mood.

I tend to think of an activity I want to do and then find somebody to do it with
I tend to arrange to meet somebody and then think of something to do.

It's rather rare for me to meet up with people. I have to answer hypothetically and feel like a fraud when doing so.

If I moved to a new area, I would put more effort into staying in touch with old friends than making new friends.
If I moved to a new area, I would put more effort into making new friends than staying in touch with old friends.

I don't have friends. The only person that I've considered more than an acquaintance as an adult now lives in a different state. There are so many questions here about a relationship that barely exists for me.

The biggest problem is that so many of such questions can be answered with "both" or "neither". I'm an extremely complicated person, who fits into multiple personality types.

Again, it's not that it's impossible for me to pick one. It just doesn't make me feel good, because it's not accurate.

For those interested, here is a thread in which we discussed this issue.

Thank you for sharing your thoughts. I truly understand your concern. However, the point is that the tests we are using have undergone very thorough validation and have been officially approved. As someone with a formal ADHD diagnosis, and with my wife being self-diagnosed as autistic, I fully recognize the inaccuracy and potential problematic nature of certain questions. Nevertheless, the presence of such questions influences the calculation of the final coefficient. Unfortunately, we cannot remove them, even if we would like to.

The selection of these questionnaires was based on an extensive review of dozens of different tools that exist in the field. These particular surveys were chosen because they are capable of providing the clearest possible picture of social competencies.

Looking ahead, I can say that once this study is completed and the thesis successfully defended, my wife is considering pursuing a PhD with the aim of developing her own assessment tool - one that would be more accurate, inclusive, and responsive to the needs of the autistic community.

Regarding the specific question you brought up - about being around people versus keeping one’s distance - it is indeed quite debatable, and you have explained very clearly why it is problematic. Your point of view is absolutely valid, especially given your lived experience as an autistic person.

In this case, i believe, it would be most appropriate to interpret the question through the lens of how social contact is typically perceived by neurotypical individuals. For example, a person who knows they have one or two close friends or generally maintains a limited social circle, and who may often experience mood fluctuations, might simply describe themselves as introverted and say that they prefer to keep their distance from others.

Therefore, in this context, it might be more fitting for you to choose the second response - “keep my distance from people.” Of course, it is entirely up to you to decide which answer best reflects your experience. But unfortunately, the challenge with any questionnaire aimed at autistic individuals is that they are, for the most part, designed by neurotypical people. This leads to precisely the kinds of difficulties you have pointed out, and it necessitates the consideration of many complex factors.

Your explanation will certainly be included in the research and will be highlighted as an important indicator of the need for the development of inclusive testing. I sincerely appreciate your perspective and thank you for sharing it.