The Naysayers and The Names We Call Ourselves

My neurodivergent son. The youngest of three sons, on graduation day.
Before you continue, I encourage you to read this and this. Primarily, so I don’t have to repeat myself.
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Much like the gender spectrum, considering the neurodiversity spectrum, I believe it is my personal right (and yours) to self-identify.
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My neurology, essentially my autism (or Aspergers), is part of my identity and genetic makeup. I don’t have a choice. I am the way I was made.
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What my neurology is called, however, in relation to my neurology-identity, is dependent upon the autistic culture and American culture at large. Unless, I want to go entirely outside the box, and just call myself a turnip. Which is completely okay with me. Or perhaps human, even as I suspect otherwise.
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Some people don’t believe individuals on the autism spectrum have the right to self-identify the way they choose. The naysayers don’t want to see or hear the word Aspergers, ever. Unless it’s to debate not to use it. Even as there are still 1000s and 1000s of individuals who relate to the word Aspergers as part of their identity (and even as it remains an official diagnosis outside of the U.S.A.).
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Some advocates, authors, and researchers equate the word origin of Asperger’s Syndrome to Dr. Asperger’s dark history. Albeit fragmented history that is still debated by scholars who site original sources.
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Example: “Although his descendants vehemently deny it, citing his passionate Catholicism, Asperger was likely a Nazi sympathizer, working alongside Nazis, in a system that killed children.” source  (This evidence, in my opinion, would likely not hold up in court.)
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Beyond the history of the word origin (A LOT of words can be traced back to dark origins.), there are opposers who make assumptions that if one chooses to use the word Aspergers that that person must think themselves superior. Others say using the word Aspergers as a form of identity is reinforcing functioning labels. Both assumptions are debatable. And there is plenty of arguments to be found.
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For those of us (like me) who were diagnosed before the DSM-V, Aspergers is still our official diagnosis in our medical records.
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Starting in 2012, I wrote 1000s of pages processing my diagnosis of Asperger’s and started several support pages using the word Aspergers. Because of my writings, 1000s of individuals on the autism spectrum are no longer alone. Aspergers is not only a part of my identify, but a part of my life’s calling and journey to self-acceptance.
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Unfortunately, I’ve witnessed the rippling effect of exclusion within the autism community, based on the names we call ourselves.
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Unfortunately, some outspoken individuals push their agenda, without thought to consequence, or despite consequence. Here is an article a community member shared with me about partial advocacy in the autism community. Worth a read.
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Sometimes it’s not that easy! Take for example my blog of over 1000 pages. Do I have a volunteer who would like to go through the pages (for free) and change every time Asperger, Aspie, Asperger’s, Aspergers is used, and to then add a note of explanation of why it was changed, and why the new word might no longer match the surrounding content,  nor make sense in the paragraph? Any takers? Also, if and when ‘autistic’ is found to be offensive, because it’s based on a disorder in the DSM-V, will you go back and add the new word? Thanks!
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You may not know that my book, 10 years in the making, Everyday Aspergers was a calling from my higher power and based solely on supporting and loving others (including my own self). The memoir is about learning to love myself through the journey of my Asperger’s diagnosis. Not an autism spectrum diagnosis.
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Based on my personal life experience, and faith, to me the word Asperger(s) is not a bad word. It is symbolic, and, in a sense, both holy and sacred.
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Frankly, even as I understand cultural movements and the importance of language, I am surprised by these adamant and pushy behaviors. As most autistics have been victims of rules society dictates and ways we are told to be. 
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It’s more than just a name preference. It’s downright bullying and pressure.*
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There are at least three key organizations run by autistic people that dictate their labeling agenda and force it onto others.*
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I was personally shamed by members of a large organization for ‘othering’ based entirely on the title of my book, with no consideration given to my actions, efforts, personhood, or character. (It hurt when it happened, but it was years ago.)
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I have been rejected as a speaker at some autistic-run conferences, even as I had stronger credentials and proposals than the other speakers, based again on the name of my book. (I don’t mind anymore, there are many other conferences. Just a sad fact.)
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Several autistic advocates have been forced or bullied to change the name of their website, company, or community social media page because it contained the word Asperger(s) or Aspie or some other word that implied Aspergers, even made up words!
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Some well-meaning autistic individuals (or Aspies) have turned away from helping others because of the continual debating, shaming, and anger over the name they call themselves. Others have left a community that they were led to believe was built on support and inclusion.*
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Parents trying to support their children have been shamed and ridiculed for the words they use, even as they didn’t know of alternatives. This is sometimes their first impression of autistic adults. Sad.*
I think some autistic individuals need to look up the definition of inclusion. Likely the definition of kindness, as well.
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Fact: Despite what is preached, in not-so-friendly terms, I have had one-on-one correspondence with 10,000 + individuals who identify with being on the autism spectrum, and plenty of them still identify with Aspergers or are okay with the term. Getting rid of Aspergers is not a unanimous opinion. It’s not even a majority. It’s just that the louder (and meaner) voices are spreading. It’s interesting that someone who calls themselves an ‘Aspie’ is accused of acting superior, when they aren’t the ones dictating how others should self-identify.*
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For the record, this isn’t a reflection of my personal preference. Today, I choose to use the word ‘on the spectrum’ or ‘autistic’ to self-identify.
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And, for the record, DSM-V, the ‘Physicians Bible’ that created the ‘newer’ autism spectrum diagnosis, is largely backed by special interest groups with financial gain at heart, particularly pharmaceutical and health insurance companies, who are known for their greed and ill treatment of citizens, and have victimized millions. The diagnosis criteria of Aspergers transitioning to the umbrella spectrum disorder was not changed for pure-at-heart reasons. It was changed primarily to assist in filling/not-impacting the deep-pocketed big businesses. Many word origins are rooted in tainted soil. In addition, Dr. Asperger is partially credited for laying the foundation for ‘autism’ conditions.

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When advocating for yourself, after an autistic dictates how you and the entire autistic community must self-identify as a neurodivergent, statements to consider utilizing:

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“I don’t support Partial Representation.”
“I practice inclusion, not exclusion.”
“I don’t support advocacy that is both incomplete and bias.”

This article, that a community member shared, explains partial representation.

There is a name for it.

. . . “partial representation” to describe advocacy that is both incomplete and biased—in other words, “when an actor claims to represent a particular group of people, but appropriately engages with only a subset of that group.”

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END Post

*Update: A leader in the autism community pointed out that the author of the article I cited is not supportive of autism community. So in fairness, here is a source:

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Afterword: To clarify, nothing happened to me, recently. Not for years. I was not shamed or bullied, as of late. I often write to process, learn, educate and provide support for others. In addition, I wrote this post as a future reference about language on the spectrum. Thanks for reading.
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Bio:  Marcelle Ciampi, M.Ed. (aka Samantha Craft)

Marcelle Ciampi (aka Samatha Craft) is a respected autistic author and community advocate, is best known for her writings found in the well-received book Everyday Aspergers. A professional educator, she has been featured in various literature, including peer-reviewed journals, Autism Parenting Magazine, The Mighty, Project Aspie, Art of Autism, and Different Brains. Marcelle works as the Recruitment Manager and Outreach Specialist at Ultranauts Inc., an engineering firm with a neurodiversity-hiring initiative, and is a consultant for Uptimize and Spectrum Fusion. A contributing author of Spectrum Women: Walking to the Beat of Autism, Marcelle speaks globally on the topic of neurodiversity. She also serves as the founder of Spectrum Suite LLC, the co-founder of the Spectrum Lights Inclusion Summit, co-executive of LifeGuides for Autistics (neuroguides.org), and a contributor and advisor to autism organizations and conferences internationally. Some of her works, especially The Ten Traits, have been translated into multiple languages and been shared in counseling offices around the world. She resides in the Pacific Northwest U.S.A. with her sons and life partner.

“Everyday Aspergers is an unusual and powerful exploration of one woman’s marvelously lived life. Reminiscent of the best of Anne Lamott, Everyday Aspergers jumps back and forth in time through a series of interlocking vignettes that give insight and context to her lived experience as an autistic woman. The humor and light touch is disarming, because underneath light observations and quirky moments are buried deep truths about the human experience and about her own work as an autistic woman discerning how to live her best life. From learning how to make eye contact to finding ways to communicate her needs to being a dyslexic cheerleader and a fraught mother of also-autistic son, Samantha Craft gives us a marvelous spectrum of experiences. Highly recommended for everyone to read — especially those who love people who are just a little different.”

~ Ned Hayes, bestselling author of The Eagle Tree

14 thoughts on “The Naysayers and The Names We Call Ourselves

  1. Thank you!!!!! I’m so sick of the policing of language ! I have a blog sitting in my drafts box addressing this to a point and haven’t put it out. It’s so true – I still use the term Aspergers and aspie as we were diagnosed with that and used aspie as a term of endearment from the time my son was a toddler and by teens he already was used to it and as an autistic person it can be tough to change engrained patterns . I’m so sick of the current silencing culture in the name of advocacy and bullying disguised as social justice … thank you for writing this. It’s brave and kindness can often be a form of bravery – thank you 😊 xo

    Liked by 3 people

    1. I hear you. Love the term ‘silencing culture.’ Very accurate. I don’t feel brave. I don’t depend on the naysayers liking me. My job is secure. I make no money from my books — as so much went into investment, still paying self back! I don’t need more friends or followers. I am content with a small circle of kind people. I speak my truth. I really could care less what the naysayers think of me. My God is my judge and I know I do good by Him. Love, serve, spread compassion and kindness. Thanks again!

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      1. Yea me neither – but when my family or close friends suddenly buy into the culture and the names and question me – and I’m called some terrible things – well let’s just say the last few months have not been easy. In the end I’ll gain back the trust I have with the ones I’ve meant to be with and feel confidence as you have now as I once did ( and I honestly can’t wait to be back at that phase again as I’m not loving this and the depression) but yea, I’m sincerely glad there are people like you who put out their truths. I may even put out my post now and link to yours xoxo

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  2. Ps is it ok if I quote 2 larger chunks with proper attribution and links as well as copy and paste your Facebook statement at the end? It was so well articulated and fits in nicely but I can just link to if you prefer.

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      1. Ok it’s up. If you have any problem with any of it that I quoted I can change it. I think I also emailed it to you but I’m unsure. Thanks for inspiration for me to be brave . Have a wonderful week and I hope your health continues to improve.

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