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HannahUCL

New to the forum and hoping some people will want to complete a survey for ASD research

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Hi all. I'm new to the forum and hope you're happy for me to post to ask if you'd like to complete an online survey on ASD and self-esteem in adults.

 

It's part of a clinical psychology doctoral thesis and the aim is to enrichen the limited research out there on adults with ASD, and how adults with ASD actually feel about ASD. It takes 15mins and 4 people are chosen at random to receive a £50 Amazon.com voucher once recruitment is closed (31st December). If you would like to take part, please click on the link below (the survey starts with more information about the study and includes my contact details, in case you wish to ask any questions or leave any comments).

 

https://opinio.ucl.ac.uk/s?s=19663

 

Many thanks!

Hannah

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Hannah just want to say I completed your survey but I found the first half to be hard work and put out a warning to other people thinking of doing this survey there are a lot of standard questions in the first half which are just regular stuff lifted from typical AS questioning processes. I felt ###### how much more of this patronizing ###### do I have to plough through and was close to quiting on a couple off occasions. I am sure others will feel the same way.

 

However once through this stuff there was a line of questioning which I found interesting but there were two main difficult areas for me and I suspect others might feel the same way. There was no differentiation between family as an extended biological family and those individuals who might constitute the immediate family you live with. Personally I felt because there are very different views between each group it was very diffiucult to give a valid response when there could be polar opposite views present.

 

In a similar way the concept of what might be a close friend or friends in general was not fully differentiated.

 

I raise these points because I think many mature adults with ASD have quite complex social relationships which are possibly far more polarized than NT relationships. As such we might have just one or two people we really trust but can be generally distrusting of wider groups even family and friends and we simply go along with as a coping strategy. I think self-esteem can be very different between these areas.

 

As we get older our lives can develop complex layers which simply are not there at earlier ages and this is very true for adults with ASD conditions. My own view was the survey would have been easier for me to answer 15 years ago as life was more straight forwards, not sure if that reflects your own position in life Hannah or not.

 

Just a few personal thoughts which are offered in a constructive way and not intended to be over critical but take into account this is research for a doctoral thesis and not simply an undergraduate piece of research. As such feel free to take them on board or leave them to one side.

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Hi both,

 

Special_talent123, thank you so much for completing the questionnaire and for your feedback on how you found it. It's really useful having different points of view to consider.

 

LancsLad, thank you to you too. It's really helpful for me to recieve constructive feedback, and I appreciate all of your points. I have responded to some of them below.

 

Firstly I'd like to apologise for the first part feeling repetitive - I can see how completing questions like this would feel irritating if you have been asked these questions several times previously. The questions are included so that we have a screening tool for ASC because there will be some people completing the study who may not have had a confirmed diagnosis, and we need some way to measure for ASC traits in participants. I will certainly take on board your feedback regarding this point and will include in my recommendations that a shorter measure be constructed and used in future for precisely the reasons you outline.

 

As for the rest of the questionnaire, I am pleased that you found it interesting. Some of the questions about family and friends are deliberately quite open so that people's subjective experience of support can be captured, however I see your point - we each have different relationships within all the family systems, so it can be hard to sum up these feelings in a multiple choice questionnaire. I think your point has highlighted the down side to using a multiple choice based study - you miss out on the richness of people's experiences. Again, your points lead me to consider the results very much as a starting point to this stream of research and I think that an interview based study could follow from this one, hopefully capturing some of the missing issues that you have raised.

 

I understand that some of the questions about social relationships may have been difficult to answer, especially given the multiple choice format as mentioned, but I hope it's clear that part of the reason that this research is being conducted because we hope to discover more about the role that social relationships can play in the lives of adults with ASC who may well have, as you say, 'complex' social relationships. I will certainly include your feedback about this and all other aspects of the questionnaire when considering the results, especially in regards to how participants may have experienced the process of completing it.

 

Thanks again to both of you for participating and feeding back. It's invaluable to the research and I really appreciate it.

 

Best wishes,

Hannah

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I was confused by the whole section to do with "community". Despite the note explaining what was meant by "community", I still wasn't clear about how to interpret it. Is it supposed to mean only the people with ASD you know personally; or including people who communicate with one another online, such as on this forum; or the entire ASD population? These are obviously very different definitions. If it was supposed to mean the whole ASD population, I think the term "community" is misleading, implying some kind of collective voice, consciousness or social bond that is illusory, just as it is when people talk about the gay community or the Asian community. I have AS but I don't feel part of an AS community beyond the screen in front of me. Honestly, I don't know what it is supposed to mean.

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Hi Hannah,

 

I have also just completed the survey, and had the advantage of having read the above posts, and your reply, posted here, which helped I think. I can see that it is very difficult to construct a survey that covers all aspects and eventualities, and I too was left debating the extended/close family, friends, and "community" issues, so I took a middle of the road attitude with my answers where appropriate to reflect overall how my life is affected.

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Thanks Watergirl and In Exile. Your comments are certainly making me consider that if any future ASC studies use these questionnaires, there needs to be much more explanation of the terms used and what the researchers are aiming to find out.

 

The term 'ASC community' is an unusual one, and you're right that any community can come in different forms. It's actually very useful that you find the idea of there being an ASC community an illusory one, however, and that the online forum may not be something you would include as part of the 'community' concept. I can see that the whole idea and the wording may seem a little odd, but to find out whether or not participants agree that there even such a thing as an ASC 'community' at all, let alone how much they feel a part of it, is all a big part of the study.

 

I'm so grateful for your feedback and thoughtful comments everyone. It's giving me lots of food for thought and all of your feedback will really help in thinking about how the questions were experienced and what impact that will have on the answers.

 

Very best wishes,

Hannah

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Filled in.... :)

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Hi all,

 

Just checking in to see if there are any more willing volunteers for my study. I'm getting lots of replies from America but also need plenty from the UK, so it would be great if some of you on here could complete the survey! Hopefully the info above gives you a flavour of what it's about and I hope my responses to some of the feedback on here make some of the trickier questions clearer, but if you do have any questions please let me know!

 

The link is: https://opinio.ucl.ac.uk/s?s=19663 and four people will win £50 Amazon.com vouchers. All answers are anonymous and the only stipulations are that you have an Autism Spectrum Condition and are over 18 years old.

 

Thank you!

Hannah

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Hello

 

I'm filling in the questionnaire but i find the colouring of the letters light blue to be hard to read.

To make the text larger folks press Ctrl then press the +/= button until it is large enough to read.

ie "Ctrl + '+'"

 

Also some of the questions for the AQ test (which i feel is very misleading) i have no preference but im not permitted to put no preference eg museum or party i like both and have no preference either way. It would depend on the attendees, sensory levels and also the type of museum though.

 

This part of the survey at the end is misleading ...."Your GP can refer you to mental health services if you feel this would be useful,".... my former GP refused to refer me to services because they kept refusing to help me. Mental health services in the UK are really poor when you're autistic on top.

Edited by trekster

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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

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Hannah, I receive neither CBT or DBT and i have been reassessed as being emotional unstable, but not learned life skills dealing with my emotions as a child. They are asking if i can just do 121 but im not receiving anything and still waiting to be put on Quetiapine. But requesting the 121 the person centred work book approach that helped me in the past

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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! :party:

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)

Edited by trekster

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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

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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

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I suppose if one goes on the theory that ASD is hereditary then it is likely the parents of representatives on this website could also make up the last ten participants you require to complete your research ?

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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

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I'll see if I can send some people over from my forum :D

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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

 

So what you actually need is those with an official diagnosis from the medical profession not those that have ticked the boxes and discovered they themselves could in fact be ASD themselves from the various online aspie tests. But from my own observations on this website some of the parents of do display much the same as the diagnosed themselves, whether they know this or not would be interesting to understand as I do believe there is some merit in the theory that ASD is hereditary and that from my own continued observation of studies into the cause of ASD, particularly the genetic and that interesting X

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So what you actually need is those with an official diagnosis from the medical profession not those that have ticked the boxes and discovered they themselves could in fact be ASD themselves from the various online aspie tests. But from my own observations on this website some of the parents of do display much the same as the diagnosed themselves, whether they know this or not would be interesting to understand as I do believe there is some merit in the theory that ASD is hereditary and that from my own continued observation of studies into the cause of ASD, particularly the genetic and that interesting X

 

hehe I'm hoping it's genetic otherwise mine and my fiancé's children (when we have them) will be normal and having 2 AS parents might be odd for them!

 

On a serious note - I do think a lot of parents of someone with AS show a lot of symptoms - mine do :D

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hehe I'm hoping it's genetic otherwise mine and my fiancé's children (when we have them) will be normal and having 2 AS parents might be odd for them!

 

On a serious note - I do think a lot of parents of someone with AS show a lot of symptoms - mine do :D

 

Well, I think most here know my view on ASD in that it is not a disorder and is in fact an enhancement as Temple Grandin is correct, the world needs all kinds of minds and our future will be stuffed if we do our best to subdue what gifts there could be inherent in the so called disordered.

 

Look at notable families and notice the brilliance in them, Baron-Cohen for example, both Simon and Sacha. as a pertinent example.

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I think 3 or so more people have done your survey :D Hope this helps.

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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

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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

 

Does anyone truly and honestly understand what that is, as fine there is a bunch of criteria but not everyone fits all and a lot of it NT's experience as well yet they don't fit the criteria for diagnosis for the umbrella term that is ASD.

 

Perhaps the best way is to ask for those with an official diagnosis of an autistic spectrum disorder as would be done by a medical professional ?

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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

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Are you still recruiting? I would be willing to take part. I have relatively mild ASD and I'm interested in how it affects different areas of life. If this means I can help others then that's great.

 

Mark

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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

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OK, I've done the survey.

I think my Christian faith makes a big difference considering some of the answers I was able to give, like feeling supported and being able to contribute to society.

I would not have such a hope without it.

Perhaps you would like to include questions about faith in a future study.

 

Mark

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