Accepting the Word Autistic/Autism

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I am sure that I will end up wording this incorrectly since my brain is exhausted from spending so much time trying to sort through my thoughts.

I accepted my Aspergers diagnosis within the first few months after my (ex)therapist talked to me about it. That process was filled with back-and-forth thinking: "it makes sense," "but am I imagining things" and "do I really actually have it?"

But since the DSM-5's removal of Aspergers and the absorption of it into Autism Spectrum Disorders, I have had an utterly impossible time of saying that I have Autism or am Autistic.

I want to make very clear that I do no believe the words Autism and Autistic to be "lower" or "worse" than Aspergers. As far as I can identify, I do not hold any negative associates with those words.

I DON'T UNDERSTAND WHY THIS IS AN ISSUE FOR ME!! !

I have no idea. I am fine with saying that I am on the Autism spectrum or have an Autism Spectrum Disorder.

I don't understand. It would make sense for me to have troubling accepting it if I actually thought it was worse than Aspergers or something. But I don't think that.

Can someone please help me figure this out ... give me some insight?

Maybe it's just because it is change. I have a lot of trouble with change. When I think things are one way and then things change to a different way, I have a lot of trouble with that. Not about the qualities of the thing that changed, but that a change happened at all.

The only reason I can think of is because 'autistic' holds a lot more weight than Asperger's. You're probably afraid that if you tell somebody you're autistic they'll dismiss you instantly as if you told them you had Parkinson's (and visibly did not).

The thing with Aspergers is people ask, "what the heck is Assburgers?" And the answer is usually, "It's a form of autism" or "It's mild autism" or "It's high functioning autism". So why not just go with one of those three, since you might end up having to give that kind of explanation anyways?

I think it's because the old notions pertaining to autism (that one with autism is nonverbal, completely disengaged from other people, virtually nonfunctional otherwise, and constantly spins an, d stims) still remains entrenched within our cultural psyche, despite all the recent findings pertaining to autism and Asperger's.

Even today, there are clinicians will still tell somebody seeking an ASD diagnosis: "You can't be autistic, you could hold a conversation!"

It's because if you haven't lived your whole life with that understanding of autism, typically, most people will assume autism means that one kid from school who couldn't talk or keep his hands still.

The merger of asperger's to autism spectrum disorder was really only done to help make more resources available to those with asperger's syndrome.

This could be part of it that I hadn't given thought to before.




This is most definitely one of the contributing factors towards my recluctance to use autism/autistic when referring to myself. It's not so much that I have negative beliefs towards Autism/Autistic, it's that I know that other's have negative beliefs towards Autism/Autistic. Aspergers is more easily accepted and for me, someone who has worked so hard at "fitting in," it may be difficult for others to even recognize the things that make us Aspergers, apart from my obvious differences which they may interpret as me just being really weird.

I also have another question that I wanna ask. I figure asking it here is easier than making a sepatate post.

What's the deal with functioning labels? From what I encounter online, it seems that they are generally hated and their use strongly discouraged.

The definition of "functioning" is: "to carry on a function or be in action." The definition of "low" is: "situated or passing below the normal level, surface, or base of measurement ; falling short of some standard." "High" would be the opposite of low, obviously.

I'm struggling to see how refering to someone whose impairments leave them unable to perform basic self-care needs - something that comes with functioning independently in life - as low functioning is not correct. Functioning on a lower level seems to mean functioning in a way that is falling short of carrying out the standard of abilities that come with living independently. It reminds me of the phrase that people use when they're having a rough day: "I just couldn't function today."

We all have impairments that effect us at different severities, so when I hear the label "high functioning" it makes me think of being able to function at a higher level that what is typical of those with autism. I know that some of those who the experts (or whoever) would consider high functioning sometimes struggle just as much in particular areas as someone who others may consider low functioning. I think I grasp how a spectrum isn't the best way of talking about the differences between people with autism.

I'm just having a hard time figuring out where it is I'm not seeing something more clearly so that I can understand better. To me, the literal definitions fit.

The definition of HFA is only autism with IQ >=70, while LFA means autism with IQ < 70.
I have no problem with these terms.
Online, people often try to make up their personal definitions of HFA and say that they are not HFA, but I have never encountered this amongst autistic people I met offline.
Then, I have read people post that they told others that they are autistic, then the others said that they must be high-functioning, and they didn't like that others said that they must be high-functioning, but I don't get the problem, as my reply would be yes I am.

Wrong. The exact opposite was true.it was felt Aspergers was over diagnosed and people were getting benefits that did not deserve it.

http://www.psychologytoday.com/blog/asp ... rdiagnosed
http://www.psychologytoday.com/blog/asp ... free-stuff


As for the OP try saying you are Aspie-Autistic or Aspergers-Autism as a partial step. Aspergers is a subcategory of Autism so the name is somewhat accurate.

Someone has really misinformed you about the reasons for the merger. Was it an individual or an organisation? In any event, the new boundaries are essentially placed in an arbitrary way, as they were in the previous DSM. The changes in the DSM 5 will impact more negatively on women seeking a diagnosis, as many women do not exhibit frank behavioural symptoms ( particularly older women) - so there are new elements of sexism and ageism now. Sadly, that doesn't surprise me, though it does add to my concerns.

A different view of the DSM 5 from what I often read here and elsewhere:

http://www.zurinstitute.com/dsmcritique.html

Don't quote me however the way I understand it is autism translates to "self-ism", not something I want to be called, definitely not a complement. Asperger was the last name of a very nice Austrian pediatrician, I think I am OK with that. That is my issue with the word autism.

Even if you don't think of autism as being "below" aspergers, many people unfortunately still do. I know people who seem to think that anyone with autism must reside in a "home" and regularly smear their own feces on the wall. People can be SO far off from the truth. I suspect you know it, and that's why you make a point of saying "autism spectrum disorder", and not just "autism".

But, if more well functioning, intelligent people such as yourself identify (correctly, of course) as having autism, you can help to inform others and raise the perceived bar of autism. Of course, it's a personal decision how you present yourself to others, and I'm sure no one will think less of you either way.

Yes. Attitudes of the ignorant won't begin to change without eduation, and that education has to be done by people on the spectrum, individually if not collectively (I wish). There are numerous opportunities and ways of doing this. It doesn't need to involve personal one to one communication (though that's good too).
The autistic community has to take on that responsibility more widely. The bloggers do their piece, and many do it very well online, like Musings of an Aspie, Woman with Aspergers, so many others too. You can write letters, give interviews, write free lance articles, comment on newspapers like the Guardian, form a support group, lots of other things, it is a snowball effect that gets going. This may happen in the next few years, I certainly pray that it does. Once it reaches a critical mass, there are attitudinal shifts in the general population, then the media follows that trend.. All that needs to happen is for inertia to be overcome in the ASD community.

I was told about my Dx in late 1989 during the days of Rain Man. I also didn't have the same privileges as my sister such as having a chance to babysit and I felt I was treated the way that Raymond was treated by his younger brother by my entire family up to that point in my life. I was also constantly picked on by the kids in my regular classes, art in particular. Some A-hole kept scribbling on printouts of Christmas trees that I was about to colour. Some of the characters in that class kept on asking me if I was a Scrooge. I should have told them, "I wouldn't be a Scrooge if some idiot would stop scribbling on printouts of Christmas trees that I set out to colour, and people would stop calling me ret*d and some nickname that I called myself in Grade one and if I could wear whatever I wanted to school without the fashion and gender cops telling me to conform!"

The way my mum told me about the diagnosis wasn't very enlightened, either. "There's a part of your brain that's underdeveloped." No teenager appreciates being told that.

I don't have a problem with those two words, anymore. I've decided to stop worrying about it 14 summers ago along with my accent.