Adults with ASD research study - would you like to take part? (a 15min questionnaire)

[HannahUCL]

Hi everyone,

 

I hope it is appropriate to post here. I am carrying out research into self esteem in adults with ASD as part of my doctorate in clinical psychology at UCL. It is an online questionnaire that takes 15 minutes, all answers are anonymous and a £50 Amazon.com voucher will be issued to four people chosen at random in a prize draw at the end (to four email addresses, if you choose to give one).

 

If you are over 18, have ASD and would like to take part, please follow this link:

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

 

If you have any questions, please email me at h.mustard@ucl.ac.uk or ascstudyucl@gmail.com.

 

Many thanks,

Hannah

[indiscreet]

I've completed the questionnaire.

[Sa Skimrande]

Forty nine views could that be 49 participants ?

 

And those that are contemplating the request, this is how can we progress and there understand more what ails us or those we love by contributing to the necessary research to aid positive progress, It's up to us as we are in a very unique position where we can attempt to help those that come after.

[trekster]

Completed the questionnaire

[Special_talent123]

I was one of the 1st 49 views completed questionaire too

[nippy sweetie]

Is it not a bit risky using a publicly available online survey? You could have the same people completing several times or giving contradictory info or even parents completing using what they think their family member might say. Is the researcher actually going to see and interview actual people with ASD too?

[trekster]

i did fill in the survey and a few surveys using what my autistic relative really thinks (which is about me fitting into society and surpressing all of my autism and other disabilities).

[Special_talent123]

Is it not a bit risky using a publicly available online survey? You could have the same people completing several times or giving contradictory info or even parents completing using what they think their family member might say. Is the researcher actually going to see and interview actual people with ASD too?

 

It is not risky, if your worried then ring up the Uni and check that person out. I been to one interview myself. Then there is another about documentaries on here, but then i had checked them out first as they contacted my website and i was on tv so they were genuine.

 

also the documentations that are sent publicly we cannot see what other's have wrote. NAS do online surveys too.

[nippy sweetie]

My Dad always told me never to believe anything you read and only half of what you see! He was very sceptical about research and about human nature in general! I`m not worried about the survey only about the ultimate usefulness of the findings. I`ve read such useless stuff over the years that is peddled as gospel truth! I wanted to highlight the possibilities of people completing the surveys not having the best of intentions. While I`m sure most Aspies are absolutely truthful I`ve met a fair few mischiefous ones too who would love to play around with surveys with obvious effects on the results.

[Special_talent123]

its because they are taking a UNI course and want to work with people with autism.... when one did a interview face to face with me she told me she wanted to be a psychologist for children with autism.

[HannahUCL]

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

[Willow-Tree]

I have completed the questionnaire

[Isobel]

Done

[Sa Skimrande]

its because they are taking a UNI course and want to work with people with autism.... when one did a interview face to face with me she told me she wanted to be a psychologist for children with autism.

 

If I were in your situation and I was told that, I would have got up and walked away, why, because the person wants to work with child autism, yet they are being helped on their way by interviewing an adult with autism, where largely as we know adults with autism are forgotten about, because the future is children, or at least that is where the money is.

[HannahUCL]

Thanks so much Isobel and Willow-Tree

[Nesf]

I also completed the survey. One question confused me and I didn't know what it meant, the one about whether you make excuses for your ASC.

[HannahUCL]

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

[Nesf]

It was the wording of the question that confused me, but no, I've never felt the need to explain myself to anyone unless they specifically ask about some aspect of my behaviour.

[HannahUCL]

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

[robert7111a]

If I were in your situation and I was told that, I would have got up and walked away, why, because the person wants to work with child autism, yet they are being helped on their way by interviewing an adult with autism, where largely as we know adults with autism are forgotten about, because the future is children, or at least that is where the money is.

 

You can't blame Hannah for what she is doing. How else is she meant to learn and do her research?. Adults can be very candid, honest and speak from first-hand experience. Children may not really understand why they have autism or why they are different to everyone else. Have you tried interviewing a child? It's not easy. And children can be very reluctant to speak in the presence of their parents (and they can't be seen without their parents). It's a difficult one.

 

It's all very well saying that the future is children. Yes, I agree us adults are forgotten about. But there's nothing you or I can do about it unless you want to retrain as an adult psychologist specialising in adult autism.

[HannahUCL]

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

[Sa Skimrande]

You can't blame Hannah for what she is doing. How else is she meant to learn and do her research?. Adults can be very candid, honest and speak from first-hand experience. Children may not really understand why they have autism or why they are different to everyone else. Have you tried interviewing a child? It's not easy. And children can be very reluctant to speak in the presence of their parents (and they can't be seen without their parents). It's a difficult one.

 

It's all very well saying that the future is children. Yes, I agree us adults are forgotten about. But there's nothing you or I can do about it unless you want to retrain as an adult psychologist specialising in adult autism.

 

I am not blaming Hannah, I am commenting on what I quoted and I reiterate, if I was being interviewed and was told the person wishes to help children with autism I would have left the interview, because I don't know whether it might have escaped her notice but telling an adult with autism you wish to help children with it, knowing full well adults are ignored comes across as downright insensitive.

 

The only way adults with this thing are going to get some consideration is by acting for themselves and if that means refusing research where the ultimate interest is children then that is what is going to have to be done, because if we allow ourselves to be used and not considered, nothing will change.

 

And to think adults should be working and paying taxes where the NAS themselves say only seventeen percent of adults with autism are in work, what about the rest of them that are out of work and being abused by the current attack on the sick and disabled, where being an adult in our society is hard enough without adding autism to it and some may be doing okay, but what about the rest that aren't, why are they forgotten as even GP's themselves say they can't help beyond prescribing anti depressants and job centres say adults with autism are virtually unemployable, so where is the consideration for adults with autism ?

 

Simple, there isn't any as all the focus is on children, but guess what children become adults at some point in their life, are they going to be forgotten too ?

[Special_talent123]

adults with autism can be activists, advocates and train people on autism that is why we come in handy.