HannahUCL

That's a really good idea Mark, thank you. And that feedback you've provided will add to my discussion when thinking about why the results look how they do.

Hi Mark, we're still recruiting (just a couple of weeks more then the survey will be closed) so please do take part. The questions focus on self-esteem, stigma against ASD and whether people have any sense of their being a 'group identity' when diagnosed with ASD (i.e. whether there is such a thing as feeling one belongs to an ASD or ASC 'community'. If you would like to take part in this study then please, please do - I will post the a brief summary report of the results on here later in the year. Best wishes and many thanks, Hannah

Yep, the best is to get people with a diagnosis. We'll make the distinction in the results between people with a diagnosis and people that showed ASD 'traits' in the screening tool but had no diagnosis. Thanks everyone for your interest and help in the study. Nearly finished recruiting now! Best wishes, Hannah

Thank you sooooo much all of you! It helps a bundle And you're right that the ideal for the survey is to recruit people with a diagnosis. We may have some without a diangosis who reach the criteria of our screening tool and are familiar with ASD and the idea of there being lots of people out there with ASD, and that's ok for this study. I guess the only caveat is that there has to be a firm understanding of what ASD is and a confidence within the participant that they do have it (i.e. not people who, to paraphrase, 'think they're a bit Asperger's' because they 'like things in order' or something similar). It seems that we've got lots of legitimate data from forums like this, so I can't thank you all enough! Best wishes & have a good weekend, Hannah

Hi Sa Skimrade, Interesting thought. It may be that some adults with ASD are the parents of someone with ASD, and so would be eligible for this study. However, what would make them eligible is that they definitely have ASD themselves, preferably diagnosed, as not all parents of people with ASD have an ASD diagnosis. If anyone on here has a parent/parents who definitely have ASD, however, I'd be very grateful if you could direct them to the link! Thanks Sa Skimrade, Hannah

Just looking for 10 more people now. If ANYONE who is 18yrs or older and has ASD can spare 15mins, please do the survey! I'd be very grateful and you can win vouchers! Please click on the link in the previous link and answer the questions as best you can. Thanks so much, Hannah

Hi Robert, I'm afraid it's the same one I was recruting for last Autumn! Thanks for checking though It's last leg of recruiting now but I still need more people, so if there's anyone out there who hasn't done my survey yet then please do - it's short and you can win Amazon.com vouchers. Best wishes everyone, Hannah

Thanks aspieman! Every completed survey counts! If anyone else has 15mins please have a go at the survey and put yourself in with the chance of winning those vouchers: https://opinio.ucl.ac.uk/s?s=19663

Hi all, I think you're highlighting an important gap in the research - that which focusses on adults with autism. It is precisely due to this 'gap' that our current study has been designed to explore the experiences of adults rather than children. It is not a study that will investigate an adult population to then link the findings with children, it is a study focussing on adults with autism so that we can learn more about the adult experience in its own right. Thank you all for sharing all your different views and for the votes of support. I hope we gather some data that will be of interest to some of you. I need 40 more people and once the results are analysed, the study will be written up and examined by the board next summer/autumn; this means that around that time I'll be able to post something on here about the findings for those who are interested. Best wishes, Hannah

Great, thanks Nesf, that's a useful clarification to bear in mind when analysing responses.

Hi Sepcial_talent123, It sounds like you've been proactive in seeking support and know what helps you. I hope your local services meet your needs soon - I realise it can be frustrating waiting on the waiting list for these things. Best of luck with the work, Hannah Thanks to all who have completed the survey - only need 30 people now, so I can't thank you enough for getting me this far. For anyone left who wants to help out, please click on https://opinio.ucl.ac.uk/s?s=19663 Have a very merry Christmas everybody! Hannah Happy new year, everyone! If there's anyone who hasn't completed my study and would like the chance to win some Amazon.com vouchers by doing so, please click on the link in my post above. I'm only 20 people shy of reaching my target and if I get the number I need then the findings will be more valid - including showing which parts of the questionnaire don't fit with people's experiences. There aren't many studies out there asking adults with ASD directly about the issues raised in the questionnaire, and I hope to bridge this gap. I'd be really grateful if you could take 15mins to complete the questionnaire. All info you might need is given in the questionnaire and in previous posts on this discussion board, but please ask me anything if it comes up. Best wishes, Hannah (posts merged as they are a continuation of the same person)

Thanks Nesf! That question is based on a previously existing scale that has been adapted for this study, and I don't think it's an absolutely perfect fit for the majority of people with ASC, but it's bascially asking if you ever feel you need to explain away your ASC/'make excuses' for having it when talking about it to others. It may not apply to most people which is probably why it looks a bit confusing, but the fact it doesn't fit with you is good to know, as it might suggest that this is not an experience you've ever had. Thanks to all of you and keep them coming! Hannah

Thanks so much Isobel and Willow-Tree

Hi Trekster, Thanks so much for completing the survey and for the feedback on the colouring and question format. The AQ isn't perfect and I realise some of the questions might be a bit difficult to answer, it's really useful to hear how you experience it as a questionnaire though. Unfortunately it's not possible to alter any of the wording as it is a previously validated screening measure so altering it to what I think would make it better would be a whole study in itself, but I thank you for your persistence with it and answering it as best you can. I'm sorry to hear that you had a bad experience with your GP and local mental health services, it's our hope that furthering research with the ASD community will continue to raise its profile and there will be less discrimination like the kind you're describing. There is an increasing amount of evidence in support of using CBT and other talking therapies for people with ASD suffering with mental health problems, and the hope is that more services will be willing and able to treat people with ASD who are seeking help for depression/anxiety/any other mental health problem, as effectively as they do any other person seeking help. Apologies for not being more able to help with your individual case, I hope that your local mental health services cater more for people with ASD in the future and wish you all the best with your own Adult Autistics group. To all other readers of this post, I still need 70 more participants so please complete the study if you have time. I hope the previous posts prove helpful to any issues that may arise while completing it, however if you have any questions or comments please email me or reply to this thread. Very best wishes, Hannah

Hi all, Sorry I've been away from this discussion for a few days. Thanks so much to those of you that have completed the survey and for the thoughtful discussion you've been having about this study and research in general. Not being able to meet all of the participants is one of the pitfalls of internet recrutiment, however all research methods have pros and cons: internet recruitment may mean there are some invalid participants, however it is one of the most effective means to recruit 100s of people. In all research there is a risk of disingenuous responses from people, whether it's face to face, paper survey or online studies (for example, people often complete surveys differently when the experimenter stays in the room to when they are completed in total secrecy). This is why we are trying to recruit as many people as possible: people giving completely fake responses or repeating the questionnaire is only likely to happen in a minority of cases, and with a large sample size and stasticial analysis, this bias decreases. It's helpful that many individual people have confirmed on forums that they've completed the study, as this has been close to the number of actual responders I've had so far. Like I say, it's always a risk, but that's why we try and recruit as many as possible and report findings as how likely our results could have been achieved by chance vs a bona fide finding. In regards to the trustworthiness of the study, I understand your concerns as anybody could post on here and I'd always urge you to complete studies that you feel comfortable answering. On my study I have published the official UCL logo, my UCL ethics code for this research, my UCL email address and the email addresses of my UCL supervisors, so if anyone wishes to verify the research they can ask for a confirmatory email or alternatively call the Clinical Psychology Dept at UCL to verify I study there. I hope that answers some of your questions and that some of you will consider completing the survey (just the once please!) as I need another 60 people. Thank you and best wishes, Hannah