Autism Life Explained: Why I DON'T say 'Asperger's'

When Elon Musk told the world of his "Asperger's" on American TV the autistic world was split once again by a word which has caused more than it's share of upset. I chose to stop using the word to describe myself long before social media came along and now don't use it at all. I'm not about to tell anyone how to describe themselves or what words they can or cannot use, but I will tell you why I made MY choice...
#EngageAutism

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[Autistamatic]

It's a personal choice at the end of it and we should all respect other people's choices as to how they wish to refer to their difference/disability. This video tells a story from a very personal point of view about how I and thousands of others watched the online autistic community dismantled brick by virtual brick. It all came down to one word and the hubris that came with it.

N.B. the DSM5 was published in May 2013 & the official change in diagnostic criteria occurred with it. The intention to change the criteria was known in 2010 but wasn't confirmed until 2012.

[Synchrodipity]

My diagnosis is Asperger's and I'm happy with that -- and I've read quite a bit of the historic literature, so do understand the context.

The thing is, I present like you -- I'm not obviously autistic; I'm verbose, intelligent, present well and for the large part go unnoticed -- and it feels unfair to label myself the same as those people with seriously high support needs.

I think that, in someway, making the 4 original diagnostic labels into one big spectrum, there's a risk that those with the greatest needs will get swept away by people who have an easier time of it.

The concept of autism has been watered down so much, that many people think autism is just about being a bit eccentric, but what about the people who have daily crippling meltdowns, those who are nonverbal, those who struggle to survive on their own?

[lechini]

That's a good one. Thanks!
I call myself Aspie, and i say I am autistic. I was corrected by a friend social worker We don't say you are autistic, we say you have autism.
I remember when working with autistic children, not knowing I am on the spectrum, i remember I was frequently instructed the same, not to call them autistic, because they have it, they are not it.
I dared to argue with my social worker friend, that I am sorry, please, i will call myself as i wish and i have a full right to do so. This is how I am, I can't get rid of it, I don't have it. I AM. The same way I am a woman, I am tall, I am white.

[WilliamMcGrath_Madrid]

The "spectrum" metaphor is understood to mean a continuum that goes from mild autism to severe autism. Nope, doesn't work that way. It's just that, a metaphor, not even the most useful one. It's just an easy, reductionistic, way for NTs to peg us without bothering to go any deeper. The unique combination of traits within each individual (and the changes that occur, often over a single day and definitely over longer periods) doesn't lend itself to such simplistic explanations. No, I'm not dark blue, or whatever. I'm the whole rainbow, depending on the time of day. A spectrum of spectrums, might be closer to the truth: a setting of 3 for social interaction, 7 on sensory, 10 on clumsiness, whatever, and the sliders tend to move throughout the day. So, not even that means all that much. Mild my foot.
Maybe we should start talking of the Neurotypical Spectrum. "You're a mild neurotypical, aren't you? Nothing like the severe neurotypicals I've met".

[mistycaledonia]

I am proud now to say I am autistic and no one will invalidate my voice again.
Asperger was useful in trying to understand at the beginning as I had never fully experienced or critically reasoned my autism until after recognising I had been autistic all my life. Now at 56 I know the absolutely debilitating and joyful nature of me and I’m going to hold onto that as I now thrive.

[autiejedi]

Fantastic! Thanks for discussing this topic 💜

[t-man]

Yes, I think instead of differentiating autism from aspergers or “high-functioning” from “low-functioning”, the distinction made should be between autism and autism with co-occurring intellectual disability.

[robertjohnburton]

Impressively produced and presented video on an important subject that speaks to all of us with autism. My medical team referred to me as having Asperger's Disease until I complained.

[dianagibson]

Another great video -- this one had much more to it than I expected and I was really touched x

[amyrudd]

I call it Aspergers because that's what it was called when I heard about it. I was just glad to have a NAME for it, and that I wasn't alone. I was thrilled to find out that there were other people like me, and that I wasn't responsible for the bullying. I wasn't arrogant, lazy, selfish, etc. I was just wired weird!

[yd]

Super interesting, I didn't push the reflexion furthur than it being no more in the DSM, that is was fixist, dichotomic and inadvertently ableist, you gave me much clearer insights, basically what I learned through my own language's "neuroqueer" online educators and my own materialist beliefs.

Also thanks for explaining this part of the supremacist history of the community; I found myself inadvertently answering to a radfem/terf few days ago that the trauma and abuse that marginalized people of any group live is valid, and forms of hateful thoughts towards others are understandable to survive injustice, but it would never be an excuse to alienate and consume yourself into neoreactionary to quasi-fascist beliefs like black/female supremacism or stalinism, and then I took the exemple that it had probably happened to a minority of autists to start wanted to rule or genocide neurotypicals, but I had no clue it had really happened at a dangerous scale. Thanks for explaining things about the history of the community us millenials have not known.

[GlitterRat]

I really appreciate this video. I will say however, I do not feel it is fair that people who use the term aspergers online get brutally attacked. It always strikes me as odd. We are a community that is trying to strike down ableism yet people regularly forget that it can be hard for older autistics who already are comfortable with that label to change- many of us, do after all struggle with change. And those who had not had experiences that put them in proximity with others may have found that original label a freeing one since there was finally a "name" for their experience. Obviously I do not believe it should be ever used again in a diagnosis but there are still many older individuals who found meaning for themselves with that label and I do feel they should be respected.

[EMorner]

I just been diagnosed at 37 with aspergers, and this is one of the first videos I found. You are telling me there's a aut/asp supremecy movement, that is really funny and fascinating to me, thanks for the history and your delivery, really great stuff!

[kikitauer]

Great video! I had no idea about the bullying part so thank you for educating us! Nevertheless I have really no choice to stop using Asperger's as I come from EU and it is still in the ICD-10 under the code of F845. I got it almost a year ago. I often use the term autistic and autism for myself but people look at me funny.

[mdj]

interesting--
i was unaware of this bullying phase. :(

during the past 20 years, I immersed myself in caring for my twins who between the two, had multiple conditions.
during that time, i missed out on many things--
including (thankfully) the aspergers bullies.

my autist son went through 3 neuropsychological assessments before being diagnosed with 'HFA; 'high functioning autism.' to me, his autism was obvious but 20 years ago the (US) medical community advised many parents with exceptionally bright; aka 'gifted, ' kids, that they "were too smart to be autistic." but i persevered because i felt they were wrong.

the names for his diagnosis evolved over time, from 'multiplex developmental disorder, ' to HFA; high functioning autism, to aspergers, to finally, ASD; autism spectrum disorder.

having seen the changes in diagnostic criteria and terminology, we now just 'go with the flow' based on audience/group(s) of people we happen to be with at the time.
<B

[mrsm]

Very interesting, thanks for sharing 😊

[towzone]

Thank you again for sharing your insights.

[bryndaldwyre]

Thankyou. Until this video, I've always called myself an aspie. This puts clarity to it all and a realisation that autistic is not a derogative label but a better description of what I am. I appreciate you explaining this better than anyone I've heard from yet. Great video btw.

[abogado]

Thanks for the brilliant and original video.

[chattychatotchannel]

my dad calls me asperges as an insult or says aspergesy (which is not even a word) and calls me a spastic and it makes me sad so I do not like the word