Autistic or person with autism? SURVEY

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(I know I've posted this in the main forum, but I'm sure there is some people that only look at this forum, so I thought I'd post it here too, if that's okay)


Hello,

I’ve decided to do the autistic or person with autism survey again. I’ve made two one for autistics and one for people with autistic kids(whether they are still a child or are an adult), if you come under both categories you can answer both. It’s a little bit different (not by much) than the other one. I thought it’d be easier to share if it is in surveymonkey. It’s only 4 questions.

For those who are autistic:

https://www.surveymonkey.co.uk/r/HG357ZD

For those who have autistic children(whether they are a child or an adult):

https://www.surveymonkey.co.uk/r/HG6GCBK



I’d be very grateful if you could answer and/or share the links elsewhere.



Thanks.

For me, it depends on the conditions of the conversation in which I disclose my autism. Within informal conversations, I am generally an "Aspie" or "autistic individual." Within formal conversations, I am "diagnosed with Autism Spectrum Disorder" or "with autism." I use both "person-first" and "identity-first" language when either seems best for the circumstances.

When referring to me, I prefer "with ASD", but when referring to myself I say "AsperGirl".

I always say my son is autistic or "on the spectrum" . I know that everything about my son is autistic and its nothing wrong with that.

I'm honestly not bothered by either. I work with children with disabilities so perhaps I'm more desensitised. I tell some parent's who are really hung up on it to get over the words "disability", "disorder" etc and deal with it, its just a word. It's not intended to be disciminatory or have any connotations, its just a word. I've also found working with people with disabilities that most disabled people don't care if they're called "disabled people" or "people with disabilities", who knows who invented that term, some do-gooder, certainly wasn't most disabled people. I think the same applies here, its just words. Personally, I'm autistic, its in very part of who I am and so is my son, I feel that if anything, "person with autism" is more condescending, but I know people think they are doing the right thing by saying it so it doesn't offend me.

Another thought after doing the surveys re labels.

In my work, when a child is referred to me, I need to know if they are HF, LF, if they have a high sensory profile etc. I need to know what have ready for them. If they are LFA with HSP and NV (nonverbal), I need to ask additional questions. The labels have therapeutic/clinical uses. Particularly in autism, the labels tell me more about the child. If the child has some genetic disorders, I know exactly what to expect just from the diagnosis and I don't need any more labels. With Autism its so varied I need the labels.

Having a ASD mind does not guarantee disability, it also increases the likelihood of giftedness. You have an ASD mind for life, but not necessarily an impairment. If you get needed support and find your niche, you can live quite well. It may not fit well in many NT environments, but few NT's fit well in environments in which I flourish and contribute to the world.

The concept of "being disabled" reduces self-esteem. It focuses on what they can not do, not what they do well. I was called/regarded as a "ret*d/stupid" until I was out of middle-school, mostly do to my auditory and speaking/language issues. I started with computers in 6th grade, then all the AP sciences and math. By the time I took the GRE my Logic abilities could not be measured by standard tests, Verbal not so much.

You have illustrated exactly what I mean. You see the word disability as having negative connotations rather than it's clinical definition which is literally, that you have some kind of diagnosis. Giftedness is a disability, it's a diagnosis outside of the normal spectrum. Disability is not a bad thing, they should have chosen a word that didn't start with "dis", some people are voting for "different-ability" which would be more accurate a description.

This is what I mean when I say I think it doesn't bother me because I'm desensitised, when I use the word it's in a clinical sense, it has no societal connotations or meaning, I mean, literally, that the person has a diagnosis of something. Societal views need to change in my opinion so that people like you aren't made to feel like "having a disability" is a bad thing or a thing that should affect your self esteem because it isn't.

I have a personal preference for "autistic," but I am not offended by "has autism" or "with autism."

Initially, I was more passionate about identity first and felt that it had a lot more meaning than I attribute to it now. It doesn't matter what you call it or how you refer to it. It's all the same. Like I said, I used to be much more passionate about this issue and insisted on "autistic," but as the years have passed, it's just become...a non-issue for me. She's an autistic with autism. Saying it one way or the other does not diminish the person she is. HERNAME supersedes the fact that she is autistic or has autism.

Plus, it became weird. My son's official diagnoses are ADHD and NLD. SPD was in there at one point, and now he has chronic motor tic disorder. There is no identity first labels that work for him, and his wiring is every much a part of who he is as his sister's. So, his sister gets to proudly wear her identity-first label and he is just stuck with a string of disorders?

Not cool.

So it really doesn't matter in our house any more.

I prefer Autistic. It's the correct name for the condition. I'm quite happy to say I have Autism, or I am Autistic. Both work for me.

"With Autism" sounds like PC speech to me, and I wholeheartedly hate Political Correctness of any kind. Say it like it is, that's what it is. No molly-coddling.

Your links did not work for me so I could not look at the questions. I am unofficially diagnosed and my son is officially diagnosed. I don't really have a preference either way in the verbiage. I tend to switch back and forth. Using identity-first language sometimes seems stilted, and I tend to pick whichever I think sounds best in my sentence, unless I think the identity-first language adds a tone I think is appropriate with what I am saying. Sometimes I use other descriptors like hyperlexic that are more specific, depending on the needs of what I am trying to say.