Online survey about drug consumption habits

[Shunka]

Hello! I am a Social Work student at the University of Applied Sciences Hamburg (HAW Hamburg), Germany. I am searching for people on the autism spectrum who are willing to take part in an online survey. It's qualitative research and therefore comparable with a long interview although it is done by writing / typing and not orally. The information collected by this online survey becomes part of a research study that I do for my bachelor thesis.

The aim of this research study is to figure out more about how Asperger's syndrome and other sorts of autism influence or can influence how much illicit drugs, alcohol and other drugs that are mind-altering and can lead to addiction play a role in the life of people on the autistic spectrum. Figuring this out can help to detect special, maybe not yet enough realized and valued strengths of people on the autistic spectrum. And on the other hand it can help to determine in which way the needs of autistic people need to get put more into regard in order to prevent or alleviate health problems that can occur in connection with the consumption of addictive drugs. This can improve the life quality of people on the autistic spectrum. In order to reach this goal a publication of the bachelor thesis (in German language) is planned.

Personal information such as names, email addresses and other contact data or data that can lead to personal identification of the participant will get stored on my personal computer but will not get passed to other people or published. The parts of texts that you write that contain such information will get anonymized before they become published as part of the bachelor thesis.

This questionnaire contains questions about various aspects of the biography, personal attitude and life experiences to gain a comprehensive picture. Experiences with addictive drugs are not needed in order to participate in this survey but the participation of people with and without such experiences is likewise valued.

The bachelor thesis will most likely get published at the beginning of October 2018. Participation in the online study will most likely be possible until the beginning of September 2018.

Answering the questions in this survey may take one or two hours or even more than that, depending on how much you write, because there are quite many questions and most of them can hardly get answered in just a few words. I therefore recommend to start this questionaire when you have much time. Proceeding with the questionary another day after having interrupted it is possible, however. I also recommend that you fill it in on a larger screen with a real keyboard, not by using a cell phone, because there is much text to type.

You can contact me anytime by email: [email protected] or [email protected]

Here is the link to the questionaire: https://www.umfrageonline.com/s/7831ad1

Best regards,

Svenja Diederichs

 

[tree]

I don't know how many, if any, members have done the
survey, but it looks to me that two aspects would put
people off.

Specifically:
A. length of time required "one or two hours"
B. "not by using a cell phone"

 

[Tom]

I'm only addicted to Dunkin Donuts. I will be glad to fill out your survey Tuesday for a voucher for a box of donuts today.

 

[Starfire]

I began the survey as it’s an interesting subject and very relevant to people on the spectrum. However, you require some extremely personal information dating from childhood and onwards which would make it very easy to identify who was taking part, where they lived, and obviously which illegal drugs they were involved in. Having all that information stored on your personal computer which may be lost, stolen or hacked etc does not fill me with confidence that there is any level of security with potentially incriminating information.

I don’t understand why you will not let participants scan through the questions before answering them? After answering the first few pages I was beginning to wonder what relevance the questions had to the survey and where they were leading, but you have blocked anyone from moving to the next page without answering in full the page they are currently on. This makes me feel uneasy.

In my opinion if you want people to spend what could be a considerable amount of time answering very personal questions for free, the least you could do is open the survey so the questions can be read from start to finish before beginning to answer on page one, otherwise it’s like being led down a dark tunnel and never knowing what is just around the corner. Good luck with your thesis, but I can’t contribute to it under these conditions.

 

[Shunka]

See: I made it in a way that there are often more than one question on one page but I didn't want to make too many questions on one page because this might be difficult for sensory reasons and it may also happen that answers got lost without saving them by clicking next page.

However, I also didn't want too many questions optional to answer. This is partly because it could happen easily that people forget to answer some of the questions before sending the questionaire and partly because otherwise it would have seemed as if those questions were not important to answer.

The reason why I ask so many questions about the biography is because there are many risk factors and protective factors that appear in the life of a person and have an influence on wether or not the person gets for example some kind of difficulties with drugs or some kind of addiction later on. If I would kept it too simple, for example by just asking people with autism about their attitude towards drugs, I would ignore all the other factors which - apart from autism - may have led to their consumption Habits and their attitude towards drugs. Doing such a thing would maybe be useful in quantitative Research which is just to design numbers and statistics (to answer questions such as: "How many people on the autism spectrum consume drug X?") but I do qualitative research and this electronic questionaire is the Substitute for a personal interview.

So that means if someone leaves too many of the questions unanswered, believing they aren't relevant, the data I get would have so many gaps that it could become useless for the research. I would just see a few "ingredients" but not enough of them and therefore wouldn't know how to bake the cake, so to speak. And it would be misleading if I would the little information I got in a way as if it't the whole truth. Just if I see the full data I can build theories about connections between the life story and the outcome. Also by comparsion with the life stories of other participants.

I consider it as unlikely that someone hacks my computer to get such information and then makes the effort to try to figure out who that person is and so on. And apart from that I haven't asked specifically about criminal activity and as far as I know the consumption of drugs is not even illegal but just the posession in some cases. However, I know that these days people are much concerned about data safety and that's also why I had to mention that I save this data on my computer. I couldn't work with the data without having it on my computer. However, you are the one who decides how detailed or undetailed you answer the questions. For example if you grew up in a Village you don't Need to write the Name of the Village or write exactly where it is located and you also don't need to write the name of your boss and so on.

By the way: If you really wanted to look through the questionaire before you answer it you could have simply made one sign in each text field (= one time clicking on a key of your keyboard) and then the text field would have counted as answered and you could have gone to the next page (and later when going back you could have filled it in with real text). That's the way I also did it when I looked at the questionaire to test it.

 

[Joel's Hear]

I don't do any drugs (except for the bottle of cheap cane liquor by my feet). Marijuana, on the other hand, helps me greatly. Any place where they have their heads extracted from their rears call it a life-saving medication.

 

[Starfire]

See: I made it in a way that there are often more than one question on one page but I didn't want to make too many questions on one page because this might be difficult for sensory reasons and it may also happen that answers got lost without saving them by clicking next page.

However, I also didn't want too many questions optional to answer. This is partly because it could happen easily that people forget to answer some of the questions before sending the questionaire and partly because otherwise it would have seemed as if those questions were not important to answer.

The reason why I ask so many questions about the biography is because there are many risk factors and protective factors that appear in the life of a person and have an influence on wether or not the person gets for example some kind of difficulties with drugs or some kind of addiction later on. If I would kept it too simple, for example by just asking people with autism about their attitude towards drugs, I would ignore all the other factors which - apart from autism - may have led to their consumption Habits and their attitude towards drugs. Doing such a thing would maybe be useful in quantitative Research which is just to design numbers and statistics (to answer questions such as: "How many people on the autism spectrum consume drug X?") but I do qualitative research and this electronic questionaire is the Substitute for a personal interview.

So that means if someone leaves too many of the questions unanswered, believing they aren't relevant, the data I get would have so many gaps that it could become useless for the research. I would just see a few "ingredients" but not enough of them and therefore wouldn't know how to bake the cake, so to speak. And it would be misleading if I would the little information I got in a way as if it't the whole truth. Just if I see the full data I can build theories about connections between the life story and the outcome. Also by comparsion with the life stories of other participants.

I consider it as unlikely that someone hacks my computer to get such information and then makes the effort to try to figure out who that person is and so on. And apart from that I haven't asked specifically about criminal activity and as far as I know the consumption of drugs is not even illegal but just the posession in some cases. However, I know that these days people are much concerned about data safety and that's also why I had to mention that I save this data on my computer. I couldn't work with the data without having it on my computer. However, you are the one who decides how detailed or undetailed you answer the questions. For example if you grew up in a Village you don't Need to write the Name of the Village or write exactly where it is located and you also don't need to write the name of your boss and so on.

By the way: If you really wanted to look through the questionaire before you answer it you could have simply made one sign in each text field (= one time clicking on a key of your keyboard) and then the text field would have counted as answered and you could have gone to the next page (and later when going back you could have filled it in with real text). That's the way I also did it when I looked at the questionaire to test it.

Thanks for your reply and answering my questions it was helpful and your response was fair. If I might make a suggestion it would be to number the questions say, 1/50, 2/50 etc for those who wish to take part. If you are concerned about sensory issues, rather than a vague progress bar at the top which isn’t very exact or accurate it would be more helpful to number the questions so it’s possible to know exactly where one is and how much is left especially considering the size of the task.

As you said, you do indeed ask a lot of biographical questions. I would estimate that the first third perhaps more, is about early life, schooling, living conditions, family, siblings, people of authority etc. In your needing so much detail and information about the formative years and onwards there is something I wonder if you are considering.

I will try to explain; I read your reply earlier today and thought it fair as I said. I went through many of the questions in advance so I would understand the aims and purpose. What happened to me, was as I began to formulate answers in my head to the questions, I began to remember things I had compartmentalised many years ago. I started to remember the beatings I received and the hostile environment I was brought up in, the broken home I came from, the deep sense of loneliness I endured, I had and have no friends. I remembered the boys catholic school which was nothing short of traumatic, the bullying, the corporal punishment I received from the priests etc etc. All of that is only a fraction of what I endured, and as a early teenager when I was offered heroin for the first time I knew it might kill me but my life was so unbearable, I took it with no hesitation. 35 years later addiction is still a problem although for me after so long I have some control over it.

What I’m trying to say is, have you given any thought to how upsetting and potentially relapse inducing your questions might be on people such as myself who have been diagnosed on the autistic spectrum, and have suffered a life of addiction, depression and PTSD?

I’m not criticising you, however, your line of questioning has the potential to trigger vulnerable people, or at least remind them of times of great trauma that they may have worked hard to forget, or dealt with after many years of therapy, or self-medicated with drugs legal and illegal. You obviously don’t provide any help to anyone who ends up in a dark place after perhaps remembering and reliving awful experiences, so please give what I have said some thought and consider whether what you need from us, addicts on the spectrum, is a fair price to pay only for you to collect some data. When you finish university, this will be a memory and you’ll move on, but we will still be here, on the spectrum and struggling to get through the day.