Help please!

In answer to Hotel California's question, Universities should prohibit this from happening. The trouble is Health Science departments seem to be a law unto themselves.

Swansea University has quite thorough policies on research ethics - here's one for Computer Science postgraduates, but similar requirements are imposed on undergraduate projects, just they may not get a web page www.swan.ac.uk/.../ethics.html

The problem with universities is they are "umbrella" organisations - there may be university wide policies but individual schools and faculties may differ on the grounds of different research needs, and these practices are peer reviewed by other Health Science departments rather than by a university.

Nevertheless it is difficult to comprehend why Health Science departments (Nursing, Midwifery, Occupational Therapy, Psychology and Psychiatry etc) are so lax with undergraduate dissertations.

However you would have to access the corpus of Health Science or related departments across universities, rather than individual universities, to stop the abuse.

Because undergraduate projects are so numerous, data gathering needs to be controlled as otherwise they can become too numerous. Local authorities endure large numbers of student enquiries every year, which supposedly they should answer, but many LAs, unless the question is clearly set out, don't answer a lot of these enquiries, because there really are just too many.

It boils down to bad supervision. The lecturer heading up student projects, and the lecturer acting as superviser should both guide students away from bad practice. This sort of thing is down to lazy attitudes amongst the lecturers concerned.

I would otherwise have expected Swansea University to have precautions in place to stop this happening.

And as Hotel California points out, this is imposing on what is supposed to be a safe place for people to seek help. Websites such as this shouldn't be used as a quarry for student undergraduate projects.

Dear Ashhhh2403,

As has been mentioned above, before any requests for research are published on this forum you must have approval from the NAS. Please see the link below for information on how to obtain this approval thourgh the proper channels. This is to protect our community members which, I'm sure you will agree, is extremely important.

In the meantime, I have removed the link to the survey from the original post above, please do not repost again until you have been granted approval.

http://www.autism.org.uk/about-autism/research/requests-for-research-and-participation.aspx

Adél, NAS moderator

I am certainly worried by the increasing number of students who are infiltrating this forum in the name of research.  I hope the moderators will be advising univerities to stop this practice, as it is making me feel quite uncomfortable knowing that there are vulnerable people on this site who are not being protected from such poor research design.

But have you consulted the Moderators before posting this, see rule 6 on Community Rules?

Apart from confidentiality issues and preying on support forums for data, Swansea University REALLY should know better than to allow undergraduates to do this. It is against research ethics. You have no proper control over data collected this way.

Also such requests must carry a statement about the disposal of evidence. Even if you claim it is anonymous, people can be identified from such data.

But one thing I have noticed, is that there is no requirement of clinicians to stay up-to-date on research and findings about autism, and I have not encountered one who is aware of research I am aware of as a member of the public.  Without them reading and listening to research, how will your exercise be different in making them see what needs changing?

We aren't stating that we can solve the problems, we are just trying to highlight the problems within diagnosis so that we can bring them to the attention of professionals- which should hopefully in turn improve the process for parents in the future.

I think until the culture of professionals not listening to parents changes no amount of research will change assessment and diagnosis.  Parents are treated like second class citizens, without intelligence, without rights and who could not possibly give an accurate portrayal of their child's traits and difficulties.  The Government says that parents are experts in their own children, but clinicians with God complexes do not seem to agree, children fail to get diagnosed because of supposedly experienced and qualified clinicians (who just took a brief training in how to administer the ADOS but have no knowledge of autism and day-to-day life for someone on the spectrum) rely on results of clinical tools and treat it like a tick-box exercise.  "Computer says no" doesn't work with human beings.  The ADOS is only 77% reliable (I can provide research evidence on request) in high-functioning individuals, yet still it is hailed by many CAMHS as the holy grail of diagnostic tools.  Diagnostic tools are also optional, and are no substitute for clinicians understanding the fact that autism is a spectrum, female presentation can differ and many children do not present their typical self in a clinical environment, as well as listening to parents.

Change the culture within the NHS before trying to change the pathway to diagnosis.

My local CAMHS believes that (and I have this in LA documentation) that parents try to get children diagnosed to get benefits (such as DLA) and I sat next to a CAFCASS professional at a safeguarding workshop who told me the same and also seemed to think that MSBP/FII is commonplace.  These idiots need educating.

Yes, current research tends to be focused on this area of interest. We are working with Phil Reed who has published much research in ASD. 

Many findings in recent literature suggest that the diagnostic process has been very difficult for the parents, so we are looking at particular aspects to hopefully improve the process in the future.
 

This seems duplicated with what other organisations are doing.