Are You a Bully in Sheep’s Clothing?

Image description: Light turquoise , salmon amd fuscia rectangle colorblock. White text reads: Thanks to you information has been recorded in this thread that others may find valuable if they would like to know what some of us autistic adults think and write about in regards to the use of person first language versus the use of the word autistic.  Judy Endow Ollibean
On Dec. 16, 2013 I wrote a blog titled “Autistics Can BE Friends” and posted the link on social media sites. Regardless of how often or how many of us autistics write about why many of us choose to call ourselves autistic many in academia and in the medical fields continue on to let us know we “should not” be doing this. I am including in this blog a public conversation I had with a Linked In reader on this matter. The entire conversation had nothing to do with the blog I had posted – only the fact that I had used the word “autistics” in the title of that blog.

I am showing but one example of how, in my life as a writer who is autistic, I am often set straight by neuro majority people. When I choose to push back an attempt to silence me typically follows. All of us autistic writers often experience this when we write something. Most of the time I simply skip over and ignore it as much as possible, but due to the increasing experience of this happening I am now writing about it.

The particular person in this one example is not the salient point here because it could be any number of individuals. This is just the latest one. It is copied and pasted here as an example of what happens to us autistic writers. I put it here as a way to highlight our experience.

This is the first time I am publicly  talking about the constant put down and othering by some who respond to my writing. I hope it is an eye opener for all who read it. I hope by casting light on this phenomenon it causes people to reflect upon whether they might want to change their public behavior towards adult autistics because it is not okay to bully us. No matter how politically correctly you fashion your words or from what righteous perch you speak them from or how “nice” you come off please know that at the end of the day the sheep’s clothing of a bully can be discovered and seen by others reading their words.

I hope that as autistics write about this more that people who do this sort of bullying will come to better understand what they are doing and based on that new understanding they might choose to change their behavior. Ultimately, I hope people in this world eventually become more accepting of those with differences, including autistics. And in that spirit – that we can all grow together in acceptance of differences without feeling the need to continually bully those with differences into silence – I write my first blog of this new year, 2014, and share the following conversation.
 
OLLIBEAN NOTE:Comments recorded are as they appeared at the social media site with spelling errors uncorrected.
 

Dr. Mindy McNeal

Teacher ● Speaker ● Hey, You! ADHD Tool Maker

 

If we continue to call persons with autism as autistics we are emphasizing segregation … Autism is not the person but a term of definition.
 

Dr. Michael Levykh, PhD
Psycho-Educational Consultant & Therapist — Affective Speech Remediation

 
I guess old habits die hard. :)) Person first!
 

Judy Endow, MSW

Autism Author, Speaker, Consultant and Artist at judyendow.com

 
Dr. Mindy McNeal and Dr. Michael Levykh, PhD I disagree with you both. I call myself autistic deliberately for various reasons. If you are interested in what many adults with an autism diagnosis think here is a blog to get you started.

Person First Attitude Trumps Language
http://www.judyendow.com/2013-Blog-Roll.html
 

Dr. Michael Levykh, PhD

 
So much for political correctness… Thank you, Judy. 🙂
 

Dr. Michael Levykh, PhD

 
On the other hand, most of the publishing organizations (and certainly “academia”) accepts writings with person only.
 

Judy Endow, MSW

 
Most adults with autism refer to themselves as autistic for various reasons and as you say, Dr. Micael Levykh, PhD, most of the publishing organizations (and certainly “academia”) accepts writings with person only. 

Who do you think should change and why? 
I have found that of all people I am most often discounted as the person least likely to know about myself or about my own autism because of my autism. This is also true for other adult autistics.
 

Dr. Michael Levykh, PhD

 
Dear Judy, in my understanding one of the reasons for PC (political correctness) movement (in regards to ASD) has been to bringing awareness to masses that people with ASD are people first and their “disorder” or “symptoms” don’t make them less people. I might be misinterpreting this issue; so, let’s hear others. 🙂 Michael
 

Judy Endow, MSW

 
I will ask my autistic friends who are also authors and will provide you with links to their words on this subject. Thanks for asking. And BTW publishing companies are changing. I have 10 publications to date with two different publishing companies along with numerous blogs.
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD 
Here is a blog by autistic adult Amy Sequenzia on this topic:
http://autismwomensnetwork.org/article/i-am-autistic
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
From Bridget Allen (permission to post here granted)
“The issue here is classifying autism as a disease to be cured. I make the comparison to cancer. I was a person with cancer (not a cancerous person). I was inherently the same person before, during, and after cancer. Cancer was a bad thing I had cut out of my body, and went on with my life. Autism, is woven into every fiber of my being. It doesn’t lay on the surface to be removed. I am an Autistic woman. Autism *does*, in part, define me because it means my experience is inherently different than yours. My sense of touch or smell is not the same as a neurotypical person’s. I process language in an entirely different manner. These are differences for which I must make adjustments and receive accommodations, but that doesn’t make the differences flaws. Autistic people identify as autistic because we can’t love our whole selves without owning that defining aspect of our being.”
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
From Nick Walker: 

Feel free to share my “Throw Away the Master’s Tools” essay anywhere, with anyone. It’s got a section on language, including the person-first vs identity-first language issue.
http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
Don’t Call Me a Person With Autism 
yesthattoo.blogspot.com
Why you shouldn’t call Alyssa, the writer of Yes, That Too, a person with autism. She is an Autistic person.
http://www.yesthattoo.blogspot.com/p/dont-call-me-person-with-autism.html
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
Another autistic blogger weighed in contributing this link. As you can see the idea isn’t new and it isn’t my idea. There are many adult autistics. We have been here for a long time. If more send me links to their blogs on this topic I will post more here for you and others to see. I do hope you take the time to read these blogs and to consider autistic people have something to say. Many people chose not to hear our voices as they assume we cannot possibly know about our own autism, our own wishes, our own thoughts because we are autistic. I hope you are not one of these people. Respectfully,
Judy Endow

Here is the blog by Neurodivergent K
http://timetolisten.blogspot.com/2011/05/i-dont-have-autism-i-am-autistic.html
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
From Autistic Hoya

 http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html 
and 
http://www.autistichoya.com/2011/11/identity-and-hypocrisy-second-argument.html
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
Here is another from Julia Bascom
http://juststimming.wordpress.com/2011/08/23/dear-autism-parents/
 

Dr. Michael Levykh, PhD

 
Dear Judy, thank you so much for this wonderful eye-opener. Although I was surprised to read the above listed stories, I understand their rationale and I certainly support them. Best, Michael
 

Judy Endow, MSW

 
Here’s one more.
http://paulacdurbinwestbyautisticblog.blogspot.com/2014/01/i-do-not-have-autism-i-am-autistic.html
 

Jackie Moen

 


Executive Director at Common Threads Family Resource Center

Keep shifting that paradigm Judy! Awesome education!!
 

Dr. Michael Levykh, PhD

 
Just a few years ago one of my ex-students had to rewrite her Masters thesis to satisfy the committee’s request for using person first. It might be of interest to you, Judy, to collect all this data (some of which you posted) to send as an open letter to colleges and universities so that they could rethink their policies and practice on this issue. Then, the paradigm might shift. 🙂 Best, Michael
 

Judy Endow, MSW

 
Here is another autistic person’s point of view:
http://autisticadvocacy.org/identity-first-language/
and another
http://hereirawr.wordpress.com/2012/04/26/whats-in-a-name-autistic-vs-person-with-autism/
 

Judy Endow, MSW

 
My autistic friends continue to send me links to blogs they have written on this subject of autistic identity.
http://paulacdurbinwestbyautisticblog.blogspot.com/2014/01/i-do-not-have-autism-i-am-autistic.html
 

Judy Endow, MSW

 
Another autistic friend added this:
http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/
 

Dr. Michael Levykh, PhD

 
We also have to remember, Judy, that there are many-many individuals on the spectrum that are not able to communicate clearly what you and your friends can. How do you think we should go about that? How do we know that we speak for them as well? Michael
 

Dr. Michael Levykh, PhD

 
In addition, Judy, there are many individuals with Asperger’s Syndrome under the ASD; who insist on calling them “aspies.” What about them?
 

Judy Endow, MSW

 
Dear Dr. Michael Levykh, PhD
Most of the links above also address this. Thanks for asking.
 

Judy Endow, MSW

 
Again, please read the blog I wrote addressing this. I again included it below. Are you actually reading the blogs I have sent? Most of the links address your concerns.
 

Person First Attitude Trumps Language 
September 3, 2013 By Judy Endow, MSW
http://www.judyendow.com/2013-Blog-Roll.html
 

Dr. Michael Levykh, PhD

 
Judy, I did actually go through many of them over the weekend and just finished the latest you posted. While I certainly agree with what you and others say, I still couldn’t find an answer to one of my questions: that there are many-many individuals on the spectrum that are not able to communicate clearly what you and your friends can. How do you think we should go about that? How do we know that we speak for them as well? 
BTW, I would like to be called Michael. 🙂
 

karen hale

 
My son is on the spectrum he just wants to be accepted for his abilities whether he is Autistic, Asperger’s, Aspie, ADHD, BiPolar or just Alex! As Alex sings in “Walk A Mile” try to understand who I am – Please go to Alex Hale My Impossible Dream on Facebook to learn more and connect to his music. We all want to be accepted and we each can choose how we are seen and the name by which we want to be called.
 

Dr. Michael Levykh, PhD

 
Dear Karen, I certainly understand and respect where you and your son come from. You are absolutely right in saying that “We all want to be accepted and we each can choose how we are seen and the name by which we want to be called.” The importance of Judy’s issue, however, is in the fact that she and her supporters make a VERY good case for going beyond the individual wants and into the public policies. 🙂 Michael
 

Victoria Powers, MSW,LSW

Outpatient Child Therapist at Millhill Child & Family Development Corporation and Inner Light Counseling

 

This is from a training I went to at the National Association of Social Workers: “50 to 1 people suffer from Neurotypical Disorder.” To be more sensitive towards those who are on the spectrum, Autism/Asperger’s should be viewed as a “culture.”
 

Dr. Michael Levykh, PhD

 

Good point, Victoria. But what does it mean to be viewed as a “culture”?
 

Dr. Michael Levykh, PhD

 
In fact, Victoria, it is out of respect and sensitivity towards individuals on the spectrum that the model of “individual first” came about. 🙂 Michael
 

Judy Endow, MSW

 
Dear Michael,
It is impossible for anyone to assume they can speak for someone unable to communicate and I never say I speak for every person with an autism label. I think you may be interested to know that your comment is often perceived as a silencing comment by people in my community. Other silencing comments include other variations of

1. You are not autistic enough to possibly know anything about autism so be quiet.
OR
2. You are too autistic to possibly understand the complexity of autism so be quiet.

Of course these sentiments are sometimes said with more dressed up words but the bottom line is that they are silencing techniques. It doesn’t make sense to me that because some people who share my diagnosis do not communicate their thoughts that then I should not communicate my thoughts because I cannot speak for them.

Yes, Victoria, there is an autistic culture. (I on purpose worded this like “Yes, Virginia, there is a Santa Claus so people who are not truly interested can have a way to easily dismiss me along with numerous other autistics who have written on this topic.) You can google autistic culture and start there. Many autistic adults have talked about this. Of course we may be too autistic to know what we talk about or not autistic enough to know what we talk about (sarcasm), but if you are interested you can easily find the thoughts of autistics on the matter.

Michael
This is my last comment on this thread so feel free to have the last word, to continue on with Victoria or to bow out – whatever is your pleasure. Thanks to you information has been recorded in this thread that others may find valuable if they would like to know what some of us autistic adults think and write about in regards to the use of person first language versus the use of the word autistic. I thank you for that opportunity for it is often the assumed privilege of the people of the majority (NT) culture who issue opportunities to those of us in the minority culture.

Also, I do appreciate your view that this does go beyond personal wishes of individual people and into the realm of public policy. For us autistics, besides shaping future public policy, much of what we encounter in our every day lives are civil rights issues.

Happy New Year to all!
 

Dr. Michael Levykh, PhD

 

LOL, you, Judy, know how to insult. Wow! Perhaps you are not as atypical as you think you are. Happy New Year to you, too
 

UPDATE SINCE THIS BLOG WAS SENT IN FOR PUBLICATION:

The last comment, the one immediately above was deleted from the Linked In site on 1-10-14 where this discussion is taking place.
 

I have not posted any additional comments at this Linked In site, nor do I plan to do so, as I previously stated I was finished discussing the matter and invited this individual to have the last word if he so wished. I am updating this blog on Ollibean with the additional comments by this conversation partner because I want to give him the full extent of his last words to this conversation, thus making the conversation complete, but more importantly, these comments so eloquently illustrate the very points I am making in this blog. Again, it is not the particular individual that is the salient matter, but instead his words from a public forum are shared here as a concrete example of the bullying autistic writers continually face. As we go forward into 2014 may we all learn to live and work together in respectful ways making our world a better place for all.
 

1-8-14

Dr. Michael Levykh, PhD

 
Jokes aside, it has been informative to participate in this discussion. Happy New Year to you too, Judy, and all the best. Michael
 

1-10-14

Dr. Michael Levykh, PhD

 
JUDY ENDOW, Being Autistic Does Not Give You the Right to Bully. You use your blunt misinterpretation of my comments to insult me publically. This is harassment and it is illegal. Please, STOP immediately.
 
1-11-14 at 12:37am

Dr. Michael Levykh, PhD

 
Does Being Autistic Give You the Rights to INSULT???
 
I am shocked and appalled by Judy Endow, as she is using her “autistic” card to maliciously attacking me for no reason at all. I did nothing, except to encourage her; I did nothing that would warrant such malicious insult. Please read all my comments on this discussion, “Rarely are autistics…” Creating an insulting blog by taking my comments out of context and adding your twisted misinterpretation is clearly an act of unbecoming professional on your part. Who gave you the right to bully me? SHAME on you for using (and abusing) your “autistic” card!!!
 
1-11-14 at 3:28am

Dr. Michael Levykh, PhD

 
You wrote: “I think you may be interested to know that your comment is often perceived as a SILENCING

[my emphasis] comment by people in my community. Other silencing comments include other variations of 1. You are not autistic enough to possibly know anything about autism so be quiet. OR 2. You are too autistic to possibly understand the complexity of autism so be quiet.”
 
Are my comments SILENCING??? Even a person with paranoia schizophrenia wouldn’t come to this conclusion that my comments are somehow “silencing.” If anything, my comments are only encouraging, supporting, and professional. SO BE QUITE??? Where in the world did Judy find “be quite” or anything remotely close to it in my comments? WHAT KIND OF SICK IMAGINATION ONE HAS TO HAVE TO COME TO THIS INSULTING CONCLUSION?
 
1-11-14 at 9:16am

Dr. Michael Levykh, PhD

 
Please, Judy, show me the comments where I am silencing you?
 


Please, Judy, show me the comments where I say ANYTHING that is not respecting you, your opinion, or your friends’ opinions?
 


Please, Judy, show me ANY comments of mine that pushed you to write this horrible blog about me? What did I do to deserve such persecution?
 

Image description black and white photograph of woman with long brown hair and glasses smiling.           JUDY ENDOW, MSW

Judy is an autistic author and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.

About the Author:

Judy Endow, MSW is an author, artist, and international speaker on a variety of autism-related topics. The award winning Paper Words, Discovering and Living with My Autism ,  Learning the Hidden Curriculum: The Odyssey of One Autistic AdultPaper Words, and many other wonderful books can be found on her website JudyEndow.com.

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