Autism and self identity research - online survey

[Rcooper]

Thank you so much to everyone who has completed the survey so far. Your responses have been really helpful. We only need another 20 people to complete the survey now! If anyone else would like to complete it the link will be live for another week or so.

 

[Tom]

I will take the survey when I have more time today, but I was wondering, speaking of identities,: Who are you? You want to probe our minds, which is ok. I mean its better then an alien anal probe. I looked up the University of Bath and R Cooper but he sounds like the wrong department and studies stomach bacteria or something. Unless this is about the notion that autism is somehow related to stomach flora and fauna or whatever that is. You are students, undergrads maybe? Under supervision of two staff'. Which ones? Do you really have a staff member named Evan Sourbutts? Or is that a Uni joke?

I noticed you folks are big on studying indentities. If you really want to do this right don't make the survey until after hanging around this or similar forums for a while and reading what aspies say about themselves. Its discussed a lot. My bet is that you don't know enough about us to know which questions to ask yet. But I get ahead of myself, as I haven't taken the questionaire yet. I was prompted in that notion by some of the feedback comments of fellow aspies.

 

[nike007]

Hello. Question: what is the definition of learning disability here? I'm from Canada, and learning disability to me means you struggle a particular area of learning like reading, math or struggle with an aspect of learning like memory, executive functions, attention, etc.. Intellectual disability means an IQ less than 70 I believe. I have been diagnosed as having a mild learning disability, not an intellectual disability. I have an above average IQ. So should I check yes or no? Thanks

 

[Rcooper]

Hello. Question: what is the definition of learning disability here? I'm from Canada, and learning disability to me means you struggle a particular area of learning like reading, math or struggle with an aspect of learning like memory, executive functions, attention, etc.. Intellectual disability means an IQ less than 70 I believe. I have been diagnosed as having a mild learning disability, not an intellectual disability. I have an above average IQ. So should I check yes or no? Thanks

Hi nike007 - yes we are using the definition of intellectual disability, so please check yes. Thank you for taking part!

 

[Rcooper]

I will take the survey when I have more time today, but I was wondering, speaking of identities,: Who are you? You want to probe our minds, which is ok. I mean its better then an alien anal probe. I looked up the University of Bath and R Cooper but he sounds like the wrong department and studies stomach bacteria or something. Unless this is about the notion that autism is somehow related to stomach flora and fauna or whatever that is. You are students, undergrads maybe? Under supervision of two staff'. Which ones? Do you really have a staff member named Evan Sourbutts? Or is that a Uni joke?

I noticed you folks are big on studying indentities. If you really want to do this right don't make the survey until after hanging around this or similar forums for a while and reading what aspies say about themselves. Its discussed a lot. My bet is that you don't know enough about us to know which questions to ask yet. But I get ahead of myself, as I haven't taken the questionaire yet. I was prompted in that notion by some of the feedback comments of fellow aspies.

Hi Tom

That is a good point - I am a student from the psychology department, and my main supervisor is Dr Ailsa Russell, who is a lecturer and researcher with a main research interest in Autism. This study is following on from a phD student's project into identity in Autism, who did as you suggested and spent a while on forums (including this one) to develop her initial research questions. Some people on here may have taken part in this exploratory research last year. Thanks for raising those points though and thank you for taking the survey - if you would like to leave any feedback on it there is space towards the end to do so, or you can email us at [email protected]

(I have not come across an Evan Sourbutts yet so can not confirm either way!)

 

[Tom]

Hi Tom

(I have not come across an Evan Sourbutts yet so can not confirm either way!)

You'll let us know if you do, won't you?

I'm glad to hear about the preliminary research. I will have to go back and see if I can find it.

We have a lot of researchers visit and most are, or where, what I would call Post & Runners. They posted their questionaire say how much they appreciate your help and you never heard of them again or the results.

So what I try to ask researchers to do now, at a minimum, is to please remember the participants (and our obvious concern with the subject) and come back and post a link to the results of your research in whatever form it takes. That way we can see the result of the study and evaluate it's conclusions, such as using us to colonize Mars or something.

I think most appreciate the research being done, but like to think of ourselves as individuals, people, not just subjects. So far, one person I have asked has returned and given a link to the finished paper and I awarded her Honorary Aspie status, the highest recognition I can give and very useful in case of an Aspie apocalypse.

I might also add, that although we are non-standard models that does not automatically mean lesser qualitatively. Considering the current state of affairs worldwide, I think Aspies (and there are many smart ones) could just as validly study what is gone wrong with you (Neurotypicals).

Good luck, Bon Voyage, etc, etc

 

[Tom]

Having taken done the Questionaire, I can see some of its purpose and focus, and thats ok as far as it goes...

But I think it does not go far enough if one wants the complete picture of Autistic Indentity. Primarily it entirely misses one of the salient aspects of identity, that for a good percentage, probably the large majority of HFAs in particular, identity is suppressed.

'To be oneself' when one is autistic to to greatly increase the frequency and severity of the following:

Bullying
Mockery
Ostracization
Negative Stereotyping
Predjudice
Assault

Therefore the standard method for many autistics is to hide one's identity and 'Wear the Mask', or in fact often many masks.

We may be the closest thing to personality shapeshifters you come accross in the natural world, and its purpose is mainly defensive and it requires a continual outlay of energy. Masking your autistic nature to fit in and not be picked out as an outsider is very fatiguing. Simple social interactions require complicated attention and investment from us. Some find the process so exhausting as to have difficulty maintaining the mask. Many chafe under the need to alter their personality. Some come to question their own identity. I have heard HFAs express quite a few times that they have kept the mask on so long they no longer know what their real identity is. I experienced that identity vertigo myself and it can be a difficult process, almost a reconstruction of one's self, as if based on pictures and drawings from the times before you adopted various masks.

 

[Rcooper]

You'll let us know if you do, won't you?

So what I try to ask researchers to do now, at a minimum, is to please remember the participants (and our obvious concern with the subject) and come back and post a link to the results of your research in whatever form it takes. That way we can see the result of the study and evaluate it's conclusions, such as using us to colonize Mars or something.

I think most appreciate the research being done, but like to think of ourselves as individuals, people, not just subjects. So far, one person I have asked has returned and given a link to the finished paper and I awarded her Honorary Aspie status, the highest recognition I can give and very useful in case of an Aspie apocalypse.

I'm glad you're asking researchers to do this, as I agree that is a minimum that should be applied if people are giving up their time to complete surveys etc on here. I will report back once we have analysed and published the findings (I'm sure you're aware this may take a while as the world of research can move very slowly, but thanks for your patience with this!) It will be interesting to hear everyone's views of the findings too.

 

[Rcooper]

Having taken done the Questionaire, I can see some of its purpose and focus, and thats ok as far as it goes...

But I think it does not go far enough if one wants the complete picture of Autistic Indentity. Primarily it entirely misses one of the salient aspects of identity, that for a good percentage, probably the large majority of HFAs in particular, identity is suppressed.

'To be oneself' when one is autistic to to greatly increase the frequency and severity of the following:

Bullying
Mockery
Ostracization
Negative Stereotyping
Predjudice
Assault

Therefore the standard method for many autistics is to hide one's identity and 'Wear the Mask', or in fact often many masks.

We may be the closest thing to personality shapeshifters you come accross in the natural world, and its purpose is mainly defensive and it requires a continual outlay of energy. Masking your autistic nature to fit in and not be picked out as an outsider is very fatiguing. Simple social interactions require complicated attention and investment from us. Some find the process so exhausting as to have difficulty maintaining the mask. Many chafe under the need to alter their personality. Some come to question their own identity. I have heard HFAs express quite a few times that they have kept the mask on so long they no longer know what their real identity is. I experienced that identity vertigo myself and it can be a difficult process, almost a reconstruction of one's self, as if based on pictures and drawings from the times before you adopted various masks.

Thanks for that feedback Tom, that's really helpful for me to be aware of when it comes to looking at the responses. I will be sure to include those points in the discussion part of the write up.

Thank you very much for completing the questionnaire.

 

[Rcooper]

Hi all

Thanks again to those of you who participated in this survey last year. Please email [email protected] by the end of September if you would like to receive a summary of the results.