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

S

Snapshot

Active Member
V.I.P Member
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!
 
There are many questions in the survey that don't have the correct choice for me. How should I approach them?
 
Cutesie said:
There are many questions in the survey that don't have the correct choice for me. How should I approach them?
Click to expand...
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!
 
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.
 
Last edited:
Cutesie said:
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.
Click to expand...

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.
 
Not to put down your wife, I fully approve and support what she is trying to do. I am going to make one of my famous psychic predictions (sarcasm) - - all of the different tools and surveys used here were developed by non autistics to be used on non autistics. As others have said, we have seen this before. And I will fill out the survey as best I can.
Snapshot said:
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!
Click to expand...
After taking the survey, I agree with the others, it does not really address autism, although it does address many of the problems we face. A few questions in particular. "I was incorrectly diagnosed with a mental health condition (e. g. ADHD instead of autism)" might be a yes. The incorrect diagnosis was NOT being considered as autistic by more than a dozen mental health professionals, despite presenting them with a list that read like the diagnostic criteria for autism. "I have had a mental health condition that affected my daily life" I am assuming this includes autism. "I have attempted suicide" No, but had almost enough pressure on the trigger to make it go off. "There has always been someone in my life who would try to help me if I was in trouble" Not only no, but there has NEVER been someone to help me if I was in trouble. The Friendship Questionnaire 1, I have never had any friends whatsoever. Since I don't now and have never had friends, most of the questions were irrelevant. Is is like asking "How often do you kiss your hippopotamus? (saying you don't have a hippopotamus is not valid." Friendship Questionnaire 32,33, I have no social contact, and I DO get frustratingly, painfully lonely. SCAS-R 10, speaking, quite competent, understanding, somewhat competent. "If I could live my life over, I would change almost nothing" strongly disagree, but only if I knew what I know now. If I didn't know what I know now, how would I know to change anything. So, either strongly agree or strongly disagree.

I am a wiseass, and one of the things I enjoy is answering a survey as accurately I can, and still being enough of an outlier to mess things up.
 
Shamar said:
Not to put down your wife, I fully approve and support what she is trying to do. I am going to make one of my famous psychic predictions (sarcasm) - - all of the different tools and surveys used here were developed by non autistics to be used on non autistics. As others have said, we have seen this before. And I will fill out the survey as best I can.

After taking the survey, I agree with the others, it does not really address autism, although it does address many of the problems we face. A few questions in particular. "I was incorrectly diagnosed with a mental health condition (e. g. ADHD instead of autism)" might be a yes. The incorrect diagnosis was NOT being considered as autistic by more than a dozen mental health professionals, despite presenting them with a list that read like the diagnostic criteria for autism. "I have had a mental health condition that affected my daily life" I am assuming this includes autism. "I have attempted suicide" No, but had almost enough pressure on the trigger to make it go off. "There has always been someone in my life who would try to help me if I was in trouble" Not only no, but there has NEVER been someone to help me if I was in trouble. The Friendship Questionnaire 1, I have never had any friends whatsoever. Since I don't now and have never had friends, most of the questions were irrelevant. Is is like asking "How often do you kiss your hippopotamus? (saying you don't have a hippopotamus is not valid." Friendship Questionnaire 32,33, I have no social contact, and I DO get frustratingly, painfully lonely. SCAS-R 10, speaking, quite competent, understanding, somewhat competent. "If I could live my life over, I would change almost nothing" strongly disagree, but only if I knew what I know now. If I didn't know what I know now, how would I know to change anything. So, either strongly agree or strongly disagree.

I am a wiseass, and one of the things I enjoy is answering a survey as accurately I can, and still being enough of an outlier to mess things up.
Click to expand...
Thank you for your feedback! As I already mentioned in my earlier response, I am collecting all feedback and using it in my work to clarify all details and the experience of autistic individuals undergoing the testing process.

This response is written to you by the author of the study, as I felt it would be more appropriate to reply personally, since my husband is only helping me distribute it. I would like to emphasize that the study directly concerns the concept of social competence and how it is realized specifically in individuals with autism spectrum disorders. Before creating the practical part of the research, I conducted a rather in-depth theoretical investigation, based on which I selected the methodology. In the theoretical section of the study, I analyzed the very concept of social competence in great detail. To put it briefly, its structure includes the following components.

The first is the cognitive-value component, i.e., knowledge, social representations of reality, and understanding of social reality. The second component is the emotional-motivational one, which refers to emotional attitudes toward society and motivation for activity. The third is the interactive-communicative component, that is, productive interaction and the performance of social roles. Based on this brief description of the structure of social competence, I selected those research methods in the form of testing that would allow me to gather the broadest possible picture of the autistic person’s experience in the process of socialization. All the questions presented in this test most accurately correspond to what I am studying in my work. Social competence as a concept is essentially aimed at motivating the development of prosocial behavior. And the purpose of this study is to examine how autistic people implement this prosocial behavior - how socialized or, conversely, isolated from society they are.

I will have a third section, which will consist of practical recommendations. Based on the research and the questionnaires conducted over several months, I will create real recommendations on how, considering the experiences of autistic individuals, it is possible to create more suitable, more comfortable, and more realistic conditions for revealing their potential and for their adequate and maximally effective adaptation to life in society.

Responding to the question about the specific tests selected for this study, I reviewed a vast number of existing methods for researching autistic individuals. These particular studies turned out to be the most suitable for the theme of my research and for the structure of the study.

If we are talking about the Life Satisfaction Scale questionnaire, it is a standardized questionnaire. It was created as a method for measuring the cognitive component of subjective well-being. In general, it is often used specifically when working with neurodivergent individuals. It serves as a final method that essentially summarizes all testing. At the moment, for example, the results of this questionnaire turned out to be the most unexpected for me. This will be shown in an interesting way in my study.

The Friendship Questionnaire is a questionnaire created by Baron-Cohen, who is a pioneer in the study of autistic individuals. It is also standardized and universal, and in fact, it provides a very good picture of a person’s understanding and manifestation of empathy and interaction skills with society on various levels.

If we are talking about the sociocultural adaptation questionnaire, yes, it is indeed designed primarily for neurotypical individuals, and there is no separate adaptation for neurodivergent people. However, from the perspective of studying the concept of social competence, it is an appropriate, correct, and necessary tool for measuring certain levels of adaptation of adults in society.

If we are talking about the VEQ questionnaire, it was developed specifically for studying exclusively neurodivergent individuals with ASD. I am attaching a PDF file of the article where you can read more about it.
 

Attachments

I found the multiple choice answers to the questions quite easy and there didn't feel like there was a particular black or white expectation about them. In fact the questions were so well thought out that it was a shame it was just a survey and not an online test.
 
Misty Avich said:
I found the multiple choice answers to the questions quite easy and there didn't feel like there was a particular black or white expectation about them. In fact the questions were so well thought out that it was a shame it was just a survey and not an online test.
Click to expand...
Thank you so much!
 
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