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Research requests

Jim V - mod

Hi all, 

Just wanted to remind people that the only you should see full research requests is in the help wanted section of the forum. 

This ensures that all research is appropriate and has been approved by the research team at the NAS. 

Naturally there may be times where people post general questions about autism, even looking for help with projects or school and we think this is okay for now as part of casual conversation. 

However, you shouldn't ever see anything asking for you to take part in research outside of the appropriate forum - 

http://community.autism.org.uk/discussions/feedback/your-help-wanted

If you do see that let us know and we'll remove the research request. When signing up for the community everyone has agreed to only use the appropriate channels to ask for their research requests to be shared. So always feel free to use the feedback option to report inappropriate requests.

Cheers :)

  • It seems that the page the link directs us to no longer exists. So how do we sign up for research studies now?

  • in reply to NAS38934

    The full rules are here:

    https://community.autism.org.uk/p/rules

    From which, Rule 2:

    This Community forum is public, so do not post personal or identifying details on it. This includes, but is not limited to, full names, addresses, email addresses and phone numbers.

    Rule 8:

    Requests for research study subjects and surveys need to be directed to research@nas.org.uk for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.

    I'd also point out that collecting data like you describe almost certainly wouldn't give you a valid result. You'd be unlikely to get two in the same postcode from here, and distinguishing 'regressive autism' is hardly clear-cut. I doubt there is such a thing except in the mind of psychiatrists. There are just differing developmental paths.

    I think you could probably post your hypothesis though, and see if anyone replies with relevant experience.

  • in reply to NAS38934

    Did you read the original post? No you can't.

  • I am awaiting an autism referral, ironically, I've been told, my special interest is autism. I have worked with people with autism in varying capacities for 25 years, always with people with the most complex behaviours. There will be many of you I imagine will believe that I just want to feel legitimate or included in some way. However, I assure you, the last time I had looked at a self diagnostic tool, when I thought that because I eat my food separately, I had autistic traits- like everyone?! Since having the honour of being invited into the world of 2 amazing, extremely autistic adults-7 years ago, I haven't been disrespectful enough to click on that button, because ultimately I can eat my food altogether- it wouldn't really make me feel anything other than disappointed. I have however been diagnosed with a bipolar disorder, 25 years ago, a symptom of Aspergers in females. I discovered this very recently in my new role supporting adults with autism- I was looking for a very basic autism 101 for beginner's. Anyway, that's where my referral stemmed from. 

    So, back to the point, during the past 7 years, whilst in a role where I could develop an amazing relationship with the unique individuals who allowed me into their minds, I, by luck as well as opportunity and training, I began to think about what could cause autism, particularly regressive autism, similar to 1 of the people I'm talking about. This began 5-6 years ago. Since then, I have developed what I believe to be, at least a theory worth looking into. I have heard many opinions, seen as anecdotal by parents- particularly who will refer to their child having what was seen as a relatively minor injury, like a fall, being when their child began to regress.

    My, maybe obsession, has lead me to here. I am conducting a research project into: Regressive Autism and Autism Clusters. For those who may be unaware, this is typically a child who reaches usual milestones until toddler age, when, particularly communication skills begin to regress and can disappear all together.

    I would really appreciate anyone who will assist me with my mission. I would ask people to simply send me a postcode, or town if preferred, along with an R for regressive autism/A for non specific autism and the number of autistic children in your family- eg EC10/R/1 or SW3/A2

    I think I'm allowed to post this, let me know if I can't.

    Many Thanks,

    Francey  Gardener