My university project

The situation where students try to use this site to get research material shouldn't arise anyway because Universities are supposed to advocate good practice, but it is not always so.

As I indicated earlier all universities have a research ethics policy. Where undergraduate projects are concerned teaching staff are supposed to identify where a student's work has ethical implications and the student is then asked to sign an ethics form, and given letters to send to people approached for research data giving assurances about how research data is used and what is done to dispose of data afterwards. Part of the problem is the Data Protection Act, but it should also be covered in the context of disability by the DDA. 

Where I think it may be going wrong in this instance is that theatre, media and arts are deemed to be creative not factual, but of course students are encouraged to draw on life and to explore real life issues. So we get theatre aimed at informing about disability issues, or racial difference or religion. I think some universities may not be pushing research ethics in art, media and theatre. Yet media needs to be sharper on good practice (especially after the telephone hacking scandal).

Otherwise no student should be approaching this discussion forum for data. It is either a breach of regulations by the student or a failure on the part of staff to supervise effectively. The problem shouldn't arise. But the trouble is these discussion fora look attractive as sources of research data.

Perhaps NAS needs to approach universities concerned when this happens.

May I add that the representation of autism is complex and savantism only concerns a minority. Most autistic individuals are not extra-special, we are simply normal human beings who happen to also have difficulties that can be disabling. Some of us also have talents, but are they really any different to the talents that people without ASD can have? True savantism - super-human abilities in maths or art - is very, very rare, but always occurs with severe disability. Other forms of so called giftedness can occur with autiism, but to reiterate, they can also occur in the non-autistic population too - many people are talented artists, composers etc, with or without autism.

I have asperger's, have been to uni, got a degree, but so what!. I am no more intelligent than anyone else who has been academically successful, it just so happens that I also find other areas very difficult. I am concerned that we could get a distorted picture of what ASD is if savantism is taken to be the norm. Most of us are not  like Rainman.

Hello Armitage2012

I'm sorry, but our rules do say that the Community is not to be used for research requests. We are happy for you to tell us more about how your production is developing and where you are up to now, rather than formal questions for research purposes.

Good luck with your production.

Sandra - mod

Thanks for clarifying. I had hoped that the lecturer or tutor helping you set up this project would have made you aware of the ethics of research. It is good practice. 

I looked up Middlesex University's policy and its a bit mystifying, though all universities have such policies and lecturers in individual subject areas should pass this on to undergraduates. The policy was agreed September 2008 due for renewal 2013 and is referenced ETH/08/07. It has loads of sub-policies so hard to advise on. Most of it is directed at Health and Social Science students.

My actual worry was about using anything from this discussion forum,  because you had indicated you were going to use NAS as part of your research, and wanted help from this forum.

However what you describe raises another issue: the representation of disability.

It is probably unfair of me to pick on you directly about this. It sounds like Middlesex University doesn't have much grasp of the ethics surrounding disability. They should have some advisory control over student theatre projects portraying disability, even if these are only seen by your own student group and some tutors.

However it might be useful to ask a lecturer about the ethics issue.

Thank you for your reply. Basically one of modules within my course allows me to produce and perform a show on a tpic of my choice. what i am looking at is the spectrum and autistic savants. by doing this i am saying ok so autistic people may act strange or have difficuties in some areas but when you see them play apiano or add up sums or draw a picture they are amazing at it so does this make them abled or disabled? any research that i will get will only be used in way that helps me to understand autism more so i can portray a true vision of autism in my piece. my university are able to back me up as this is for a part of my grade in my last year. i will not use the information to expose anyone or use it in the wrong way that it offends anyone. 

Hi Ella,

I think there is a growing interest in discussion fora like this one because they explore issues which are less easy to explore in controlled scientific contexts. In controlled situations the participants may be drawn from clinical patients or volunteers, but tend to be a predictively defined group, and may not be representative.

The attraction of being an "invisible" observer of free discussion is that you can get new information and new ideas that might not come from scientific contexts.

Nevertheless the same research ethics issues apply. Are theatre and art undergraduate projects as closely vetted on the ethics of subject confidentiality as applies in social sciences, such as psychology?  I'm not sure they are.

The moderators may have concerns as to how data is used, but your college or university should be ensuring that research ethics are applied in all undergraduate research, only you give no hint of this in your request.

Such fora as this flourish because they appear safe. I think there is a growing danger that they are picked up as sources of research data without ethical consideration.