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Help with research on autism and mental health

maddy5
maddy5 Member Posts: 7 Listener

Hello, 

I am a student and currently doing a research project entitled 'What are the causes of mental illness in autistic girls and women?'. I'm making a survey to send to students in my school to gather data. 

I am autistic myself, but before I send out the survey I would really appreciate some other autistic people's input. Please could you read my draft of the questions attached to check I haven't used any improper/outdated language or too intrusive questions etc. 

Thanks! If you have any comments/advice about what I should put in the survey please tell me 

Survey:

1.       Have you ever seen an autistic character in a film or TV show? (Where it was explicitly stated that they were autistic) Yes, no, I don’t know/I can’t remember

2.       Have you ever read about an autistic character in a book? (Where it was explicitly stated that they were autistic) Yes, no, I don’t know/ I can’t remember

1/2a. If yes, in your opinion how were they portrayed/described in general?

1/2b. Was their autism shown as a ‘problem’, for example for their family/friends? Yes, no, I can’t remember, other comment

1/2c. Was the character male? Yes, no, I can’t remember

1/2ci. If no, what was their gender?

1/2d. Did the character have many friendships? They had lots of friends, they had a few friends, they didn’t have many/any friends

1/2e. How old was the character? Up to 5 years old, 5-10 years old, 10-15 years old, 15-20 years old, over 20 years old, I don’t know

1/2f. Did the character have any mental health problems that were shown, explicitly or implicitly? Yes, no, I don’t know/I can’t remember

1/2fi. If yes, can you give more detail?

1/2g. If the character’s interests were described, what were they?

1/2h. What did you learn about autism from the book/TV show/film?

1/2i. What is the name of the book/TV show/film?

3.       Any other comments/details you can remember about the character?

Your knowledge about autism:

(yes, no, I don’t know)

1.       Do you think autism can be cured?

2.       Do you think autism is a neurological illness/disease?

3.       Do you think autism is a mental illness?

4.       Do you think you can be born autistic?

5.       Do you think both adults and children can be autistic?

6.       Do you think autistic adults are ‘less autistic’ than children

7.       Do you think a person of any sex can be autistic?

8.       Do you think a person of any gender can be autistic?

9.       Do you think boys are more likely to be autistic than girls?

10.   Do you think autistic people can have mental illnesses?

11.   Do you think autistic people are more likely to have a mental illness than non-autistic people?

12.   Do you think you can tell if someone is autistic without them telling you? (Yes, no, sometimes, I don’t know)

 

13.   What do you think of when you think of autism?

 

1.       Are you autistic? Yes with a formal diagnosis, Yes with a self-diagnosis, No

If yes, and you’re comfortable answering:  

Have you ever been bullied? Do you think being autistic was a reason for this, why?

Have you ever struggled with your mental health? Do you think being autistic played a part in it, how?

Have you ever experienced judgement or discrimination because you’re autistic?

Have you ever seen autism portrayed inaccurately in media, like a TV show, film or book? Can you give more detail?

Have you seen autism portrayed accurately in media?

Do you think being autistic can make friendships/relationships more difficult? Tick all that apply.

-          Being autistic makes no difference

-          Being autistic can make relationships different to other people’s relationships but not necessarily more difficult

-          Being autistic has made making friends more difficult for me

-          I find friendships/relationships difficult but I think this is unrelated to being autistic

-          Being autistic can make friendships/relationships more valuable

-          Being autistic can make friendships/relationships less valuable

-          Being autistic makes friendships/relationships easier for me

-          I don’t know

-          Other

Tagged:

Comments

  • Sandy_123
    Sandy_123 Member Posts: 2,184 Pioneering
    Hi @maddy5 welcome to the forum, good luck on your research
  • poppy123456
    poppy123456 Member Posts: 24,664 Disability Gamechanger
    Hi,

    I appreciate that you're a student but i don't think this is appropriate for a public forum, especially because others will be able to see a person's answers. For me, some of the questions are just far too personal, especially as i have a member of my family that has ASD. In my opinion, this needs to be more discreet so that others don't see anyone's answers.
    For this reason i won't be taking part in your research but i wish you good luck.
  • Sandy_123
    Sandy_123 Member Posts: 2,184 Pioneering
    edited October 31
    I think the question is if people agree with the questions on the survey or if anything needed changing,  before the poster gives the questions to elsewhere and not looking at anyone here to answer them,  just wants input on questions ready to go out.

    I'm making a survey to send to students in my school to gather data. 


  • maddy5
    maddy5 Member Posts: 7 Listener
    Yes, I wasn't asking anyone to answer them. When I post it it'll be anonymous. I was more looking to see it any of the questions themselves might be offensive in any way or problematic. When I send it it'll be optional of course no one is obliged to answer if theyre not comfortable. 
  • Sandy_123
    Sandy_123 Member Posts: 2,184 Pioneering
    Hi @maddy it's fine, someone may be able to offer some advice that you need on your questions. I mean they look fine to me but I'm not in the group that your aiming at. What will you do with the data you collect in your studies
  • maddy5
    maddy5 Member Posts: 7 Listener
    hi @Sandy_123 my research is consisting of the survey as well as a lot of my own research using a large number of psychological articles/studies from acedmic journals. I'm aiming to find the factors that could lead to mental health problems for autistic girls - im doing a lot of research on the effects of masking/camouflaging,  the double empathy problem, stigmatisation of ASD and how the way it is portrayed in media adds to stigma effects the way autistic people are treated, this might include bullying. at the end of my studies I'll produce a 5000 word dissertation answering my question. From the survey, I want to gather what people know/think they know about ASD in general, how they have seen ASD portrayed, and get some autistic people's first hand experiences. The questions about people's knowledge of ASD will help me make links and possible inferences, for example if people think there is a cure for autism, I can infer that people have the mindset that ASD is like a disease and should be fixed. If there is a high statistic of people believing this, it suggests that it would have an impact on autistic people and make them feel less worthy, for example. So I would mainly be using the  survey for the statistics to use as evidence. 
  • Sandy_123
    Sandy_123 Member Posts: 2,184 Pioneering
    Wow 5000 word dissertation, that's a lot isn't it. Hopefully you'll get lots of answers tomorrow. I wish you good luck with it and let us know how you get on after you've done it. 
  • maddy5
    maddy5 Member Posts: 7 Listener
  • Tori_Scope
    Tori_Scope Posts: 6,575

    Scope community team

    Hi @maddy5 :) Yes, it's okay to ask for feedback on this kind of thing here on the community.

    I think your research looks really interesting, and that you've asked some important questions. I also don't have autism, but the wording looks okay to me after a quick read.
    Do you think autism is a neurological illness/disease?
    The only thing I thought of was that it might be easier to say 'condition' or something along those lines here, unless you're wanting to know if people see it as an illness or disease? 
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  • maddy5
    maddy5 Member Posts: 7 Listener
    Hi, thanks for your reply. That question is aiming to find out if people have a generally negative perception of ASD, so I used illness/disease because those things are usually seen as problems and bad things, but autism isn't an illness or disease because it isn't inherently bad or unhealthy. I avoided using condition because I have seen the word condition is sometimes used for ASD, (like 'Autism Spectrum Conditions')- that may be outdated but I need the question to be explicitly right or wrong, to test to see if people's knowledge about ASD is correct. After they answer the survey I'd plan to display the correct answers to avoid confusion or anyone thinking I was implying it is an illness or disease. If you think that question is too easily confused let me know and I could remove it 
  • maddy5
    maddy5 Member Posts: 7 Listener
    Ive just reread your reply and realised that the question is confusing as to whether its emphasising whether they think it is neurological, or whether they think its an illness, so I see what you mean. Maybe I need more than one question, like 'Do you think autism is a neurological disorder' (which it is) and then 'Do you think autism is an illness/disease?' (which it isnt) 
  • Tori_Scope
    Tori_Scope Posts: 6,575

    Scope community team

    Ive just reread your reply and realised that the question is confusing as to whether its emphasising whether they think it is neurological, or whether they think its an illness, so I see what you mean.

    Yes, this is what I meant @maddy5 :) Sorry, I don't think I was as clear as I could have been with my comment!

    Maybe I need more than one question, like 'Do you think autism is a neurological disorder' (which it is) and then 'Do you think autism is an illness/disease?' (which it isnt) 

    Yes, I'd personally probably split them out like you have done here. I think that should be clearer for people, and give you data on both of those things.

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 539 Pioneering
    Hey @maddy5

    Thanks for your post. As an autistic woman, I am really pleased to see the area of your research as I think it is really important. Have you had ethical approval and your research proposal approved yet? They are essential before you start collecting data. In terms of the use of language within your questions, I think they are absolutely fine.

    However, I do have some feedback for you from the perspective of my research hat. At the moment, I sense your research is more around people's perceptions of autism spectrum disorder rather than the causes of their mental illness. This would be fine if it directly answered your research question but, unfortunately, it does not as your research question is centred around causes of mental illness in autistic girls and women. Just to give you some helping suggestions in case this is something you would appreciate altering:
    • You may wish to narrow your question down to a specific type of mental illness, e.g. anxiety. 
    • If you don't have a lot of time, I would simply suggest just removing a few questions which are less direct in answering your research question. 
    • If you have more time and wish to take a quantitive approach - From conducting the first stage of your research (the literature review), you could draw on statistics to form a list of the potential most common causes of mental illness amongst autistic women and girls. Participants could then rate these according to their own experiences.
    • If you have even more time and wish to take a qualitative approach - I would leave it as an open-ended question, perhaps in the form of interviews or questionnaires but explicitly ask something such as 'in your experience, what has caused you to experience mental illness as an autistic woman/ girl?'.
    Also, if you haven't already, I advise reading the National Autistic Society's information about women and girls. If you are interested, you can find it at https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls

    I hope this helps! However, if you need anything to be clarified further, please don't hesitate to ask. I am wishing you the best of luck with your research  :)
    I am a Scope volunteer. I have knowledge about the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • maddy5
    maddy5 Member Posts: 7 Listener
    Hi @L_Volunteer thanks so much for your feedback. Yes I have had initial approval, however my research title and plan for my dissertation is still in the initial ideas stage and can be developed. 
    I agree with a lot of the things you've said and was actually starting to realise some of that already. I definitely do seem to be swaying towards the topic of perceptions of ASD, probably because I just have a personal interest in it.
    After my initial post I was actually already reevaluating the mental illness aspect of my research, I'm thinking of changing it to mental health problems as I don't feel qualified to explore causes of actual specific disorders. 
    An option would be to change my title to something along the lines of 'how does society's perceptions of autism link to mental health problems in autistic girls?', as I want to include my interest in how people perceive autism. 
    You've definitely provided me with a lot to think about, I appreciate it. 
    And yes, I love the NAS website its very useful. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 539 Pioneering
    Hey @maddy5

    You are welcome. I also have autism spectrum disorder so I can empathise with how you may have become swayed towards your interests. Interests are good and they can be used rather flexibly in dissertations. It just may mean adjusting your research question, aims, and methodology to reflect your interests or ensuring you focus on your research question. In my experience, writing your research question at the top of each page can be helpful with keeping on track! I am glad to have been of assistance but if you have any further questions or would like to discuss this further please don't hesitate in reaching out again  :D
    I am a Scope volunteer. I have knowledge about the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.

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