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
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?
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.
If you read nothing else, please read this today. It is a perfect example of what Autistic people are up against when they speak out about how they are treated, being spoken of etc. This is what WE are up against when we try to get others to listen to our daughter who writes to communicate. SILENCING. It happens. It IS happening. It needs to STOP. NOW.
Yes! Thanks for posting Judy. This is a huge issue that needs to be addressed. The world of academia needs to catch up. I was taking a class at UWM and when I brought up this issue the teacher said that she knew that most autistics wanted to be called autistic, but university policy dictated that they use person first language. :-(
Judy, isn’t it funny that dr. Michael was the one complaining about the language you use to define yourself, he was the one saying that everyone should call autistics what non-autistics decided, yet he says you are the one trying to force people to use one language?
And I am glad you responded his “who speaks for the others who don’t speak”. Nobody can speak for them. You are classy and patient.
Judy, I have been getting so much feedback from parents of autistic kids. I’ve spoken about this condescending dismissiveness before, but you showed such a clear example. It stirred up a lot of anger. You are so appreciated for all you do, not just by autistics like myself, but by parents who see you are fighting a battle for their children. (With grace and dignity if I say so myself.
I am Autistic, not a “person with Autism.” Many Autistic people, like me, choose to call ourselves “Autistic” for good reasons. Read this piece, and follow the provided links, to understand why we prefer “Autistic,” if you don’t already agree with us. Thank you to Judy Endow for this Autistic point of view on the “Person First” issue.
I have good news from academia. Many (but not all) people in some academic fields such as education (my field) still believe that researchers have more expertise on people’s lives than people within their own cultures do, but this is because of the way they believe knowledge works.
But here is the part that is good news from my perspective as an Autistic, and also from my perspective as an academic. This is starting to change. Academics from other fields are having an impact. They are doing this via disability studies and other cultural studies fields, and also because more people are doing studies in other ways. One of the primary other ways is called “qualitative research” and many qualitative researchers are big believers in culture.
To make a long story short, keep on writing up evidence like this, because it helps the academics who believe in culture, as well as people’s own self-determination of their identity, etc., in their quest to learn what is going on in our culture. Thank you for all you do!
Love,
Ib
Profound
The condescension of the good doctor was just…icky to say the least. Kudos, Judy, for showing such grace and cool in your responses.
My favorite part: “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.”
– See more at: http://ollibean.org/2014/01/09/bully-sheeps-clothing/#sthash.HEeUjZgp.dpuf“
What I found most intriguing was his line:
“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?”
because:
1) You never claimed to speak for all autistics.
2) Who does he think these people are more likely to identify with? Other autistics, or neurotypicals?
… and never mind that most autistic people CAN communicate, if given the tools to do so.
Just beautiful Judy Endow! Bravo, and way to start the New Year off with a BANG! ~This is a must read!
Bravo Judy!!!! I use identity first, autistic. I find it extremely disturbing that the whole idea behind person first language is to see the person not the disability and is supposed to be an act of respect (?), but the comments from those who support that line of thought often do the exact opposite. As I read this I see a lot of what I call “box thinking”, which is labeling a person, putting them in a box, and believing that certain needs, weakness, and strengths apply to those who fit in XYZ box. So using person first language doesn’t get rid of the line of thought that it claims to.
It is also extremely disrespectful to tell someone or a group of people how to refer to them self.
Judy, this was very gracefully handled on your part. It should be obvious as a matter of basic courtesy and respect that one refers to any group of people using language they prefer.
I think Judy chose the most civilized example of her being challenged by non-Autistics. It’s as if using the self-identifying label of “Autistic” acts as a lightning rod that draws a firestorm from Autism parents raining down on her head! Their words are often shockingly cruel, but in turn Judy responds politely & attempts to provide more information for them to consider. Sadly, no matter how carefully Judy explains how she, & many other Autistics, feel/think/experience things, her perspective is completely disregarded as having any validity whatsoever or even mocked outright!
Also, Judy briefly eludes to in one of her comments, she is either accused of being TOO AUTISTIC–the assumption is that she is incapable of understanding, or she is NOT AUTISTIC ENOUGH–so she can’t possibly know what it is to have “real autism” like their non-verbal “low-functioning” child. I’ve noticed that in almost every case these are parents of very young children. They say things like, “You have no idea! My four year old will NEVER be able to____.” Speak, be potty trained, have a job, live on his own, get married, have children, etc… If Judy has accomplished any of these things, then she doesn’t have “real autism.” If Judy, or any of her friends, share personal things, for example, that they grew up in an institution, have significant impairments, were/are non-verbal or officially deemed “low-functioning” in order to demonstrate, “See, I AM “really” Autistic.” it is met with complete skepticism or outright rejection of it being factual.
Woven throughout these exchanges is either a clearly implied or direct message to Autistics: STFU! Because, in the end, I believe this is the underlying reason for this hatred. Don’t tell me that MY child is “Autistic”, that Autism is not something separate that can’t be cured/removed from him/her. Don’t tell me I can’t have the life I envisioned–& could still have if I cure my child. Don’t you dare tell me you can possibly know anything about MY child or how s/he might feel because then I might need to change my way of thinking about, being with & planning for him/her! We don’t want to think about how we need to change our parenting, our teaching, our education system, our social & employment programs. That’s too hard. It’s easier just to tell Autistics: Shut the fuck up.
Autistics aren’t going to shut up, folks! Thanks to brave outspoken advocates like Judy, some of us parents are raising our Autistic children to love & accept themselves, to be proud of who they are & to demand their human rights. WE need to shut up & listen to THEM.
Kristi Sakai, mom of 3 AWESOME Autistic kids ages 21,18 & 14
*A. It’s nearly impossible to predict what a four year old will be able to do or not do in adulthood. B. You’re stacking the deck against your kid by assuming he will “NEVER” do anything.
BAM!!! Judy, so well said and powerful. I hope EVERYONE reads this!!!!
I think Judy Endow handled this really well, and I am so pleased to have a bibliography of all these writings from autistics on this topic. I have been in so many “discussions” about this topic, with “PC” individuals who insist on “correcting” my language, and when I tell them that I defer to the preferences of my autistic son, autistic friends, and the autistic writers I read, they dismiss it … because, well, “people first!” Ugh! When I challenge them about the preferences of those people, and who they are to decide, they shrug it off. smh.
O.O Wow, Judy, that guy has serious *issues* to explode at you like that (his comments that went into the wee hours of the morning). What a jerk! I didn’t see you misinterpreting his earlier comments at all, let alone in an “illegally harassing” way. Sheesh!
O.O Wow, Judy, this dude has serious *issues* to go exploding at you like that well int the wee hours of the morning).
In any case, I didn’t see you misinterpreting his earlier comments at all, let alone in an “illegally harassing” way.
Not neurotypical loss, autistic gain! Substitute autistic for deaf in this video and you’ll see what I mean…. http://www.youtube.com/watch?v=F5W604uSkrk
Thank you for this, Judy. I reblogged with comment on my blog (walkinontheedge.wordpress.com). As an autism parent, people like that frustrate me – how can they listen to/respect their own autistic children if they don’t listen to/respect the autistic adults they will eventually grow into? Sigh.
What strikes me as odd that this guy, although he claims to have a Phd, has such a hard time reading. ‘Could be perceived as’, is not the same as ‘is’. Why doesn’t he get that.
His posts in response to you Judy prove everything you illustrated in your article. But they also show him to be quite unstable which is worrisome to anyone he works with!
Thanks for your continued writings, Judy. The clarity and logic of your communications continue to delight me and help me think clearly. You are such a wonderful resource to all of humanity both NT and autistic. My son’s life has been so much richer because of what we’ve learned from you. But I think my life has been improved even more. You are a very classy person with remarkable courage and talent..
I like the guy. Looks like he’s had some serious cognitive dissonance blow up in his face and his anger indicates he has entered the process of grieving for his old ideas :-)
I find the anger exhibited by both Judy Endow and Dr. Levykh to be disturbing. Judy seemed to be itching for a fight, and Dr. Levykh would have been well advised to walk away rather than engage in a prolonged conversation with himself.
This poor, oppressed NT man, being BULLIED and HARRASSED by the expedient of QUOTING HIS OWN WORDS. Apparently it’s not okay to show other people what he said in a light that does not make him look good. When will the persecution end?!
One of our readers had issues posting on site but wanted to show her support :
Hello Ms. Endow – my computer is being goofy re. commenting on Ollibean, so I wanted to follow up and let you know I agree and support you re. this article, and the blog that followed due to Mr/Dr. Levykh’s comments.
Unfortunately, he sees persecution everywhere – sigh. This is the 2nd thread that I’ve read where he went off on a “people are being mean to me” tangent. Hopefully he’ll chill out, but I’m wondering if he is a troll or personally unsettled. If he is trying to build interest in his business through making himself the center of attention on the boards, I would guess this would backfire as the picture he is putting together of himself doesn’t reflect well.
Anyway. Just giving you additonal support and agreement. I’m NT, but because of the words of autistic bloggers like yourself, I rarely use person-first and generally for the comfort of others. And then I tell them about the choice to use “autistic” in its place.
Thank you for your words.
I think Michael was professional, encouraging and polite the whole way through. He is right in saying you are playing you autistic card. What exactly has he done to offend you so much? I am the mother of a 3 year old autistic boy / boy with autism. What on earth is the difference? I also have 3 NT children and have been going about oblivious to anything to do with autism for 43 years. You cannot expect people to be educated about this. Why should they? Or care whether you have autism or are autistic, or the difference in wording. You all need to calm down and just get on with life. you are wasting far to much of you energy on a silly discussion that means nothing and changes nothing. Attention seeking comes to mind. Just get on with living and drop it.
I looked up Dr Levykh’s Linked In profile and I see that, “Dr. Levykh is the father of an adult child diagnosed with Autism Spectrum and other developmental disorders.” I find it troubling that he is addressing issues that could easily have been his very first priority prior to creating his Affective Speech Remediation – which means that it isn’t grounded in a fundamental understanding of Autism as Autists understand it. Furthermore that he doesn’t identify with the Autistic Community or realize that we have our own culture despite having an Autistic child is also troubling but I’m hoping that he’ll process this exchange on your blog and come to a deeper understanding over time.
I’ve written about this as a parent, detailing how when my own kids on the spectrum weren’t able to tell me, I finally realized and searched out what adult autistics had to say, and that they overwhelmingly asked to be called autistic (though not entirely – just had a Twitter conversation with an adult who prefers the “label” be completely left out of it).
I get called out by parents more often and more vehemently for ‘daring’ to suggest that using the word autistic is respectful; for not listening to what other parents have said …
when I posted about it, the idea was one of respect – and yes I am still a parent, but my husband and all three sons are autistic. It’s not something we hide, they are all at different points on the spectrum, and I am still learning the best ways to both respect them and help them grow into their potential.
How respectful is it to ignore adults who have the same diagnosis, who have spoken about what they prefer to be called, because someone else somewhere decided this was the best way to show respect for our kids. I feel it “others” them more than it respects them. And before I found other autistics who have written about it, couldn’t quite put my own feelings into words.
So anyway, this is just to say that there ARE some of us out there who DO care and WANT to treat not only our kids but ANYONE who is autistic with respect. We are listening to what YOU, and what other adult autistics are saying.
At this point I have two kids who are able to tell me a bit of how they feel … one boy says he doesn’t identify as autistic because he just identifies as himself; my oldest isn’t quite able to verbalize it to that degree, but says that being autistic is awesome and he wants everyone to know it. My youngest doesn’t have the words to tell us yet, but we hope in time we will find a way to hear his thoughts on the matter too. We just want to do the best we can for our guys, including giving them self-awareness and self-respect that seems to be lacking in the society when it comes to autism.
Based on the “Benefits” he lists for his therapy practice, it seems like he perceives autistics as lacking empathy and needing fixing. And that schizophrenia comment…geez. Everyone loves an ableist autism therapist! Not surprised that he can’t handle an Autistic woman knowing something he doesn’t.
This blog is about how autistics are often silenced. The example is the person first/identity first language. Most commenters seem to have gotten caught up in the language debate. I have an older blog on Person First Attitude Trumps Language http://ollibean.org/2013/09/03/person-attitude-trumps-language/?result=search The blog here is about silencing autistics.
I have found that age seems to be a factor. Many younger moms prefer person first language whereas older people don’t. I think what we call ourselves whether related to race , gender, etc. often comes before or after depending on how we experience our identity and life.
I’ve had enough person first. We need more of a focus on bigger issues than PCness. Like jobs, support, not dehumanizing autistic people by portraying them as tragic… kicking the butts of autism speaks for being useless.
I am sorry but he was being condescending and not even listening to or respecting your pints and silencing you with, well, but…
So irritating.
I can’t believe how unprofessional he was! I shouldn’t be surprised, though, based on the psychologists I’ve known.
Thank you for the link to hereIrawr, and thank you for standing up for us, Judy. I appreciate the discussion very much.
I’ve just googled him out of curiosity, it’s rather scary that he’s a therapist and educational psychologist, cos no doubt he’s just as condescending, paternalistic, passive-aggressive and dismissive to his clients.
He showed sincere concern and shared how the person first language was first developed and what purpose it stood for at that time. Times have changed, thankfully. Now I think identity first language is what is needed. I have been marked off on clinical reports for using identity first language when referring to an individual. I ignore it, and continue to right identity first. It is considered unprofessional. In our fields if we are perceived as unprofessional, we are not going to be taken seriously by others in our fields. I think his comments were misinterpretted as malicious when, in fact, there is an ableist giant to be fought in the medical community. He asked valid questions that hold weight in making that change occur. If you want medical professionals to be an agent for change in the field, then PLEASE equip us. Don’t fight and silence the ones who are trying to bring unity and acceptance. It’s diffferent being in the trenches trying to fight the philosophies in your own field. In my opinion, he did nothing wrong, but inquire. Your bias, regarding him as malicious though he is probably one of the most open minded individuals in the med professions to change in attitude, has stunted the very growth you were hoping to achieve by educating him. The one who should be attacked if at all is the one who did not continue asking questions. The one who does not care to read all of the articles and blogs you shared. The one who does not ask questions demonstrating forward thinking about how to apply these principles in their own field. I find it interesting that the one attacked was the one who actually invested time in investigating for the purpose of understanding and was willing to expand their own thinking to the Autism cummunities benefit. Acceptance will be birthed from understanding. Understanding will not be achieved if you push away the ones willing to try to understand. For them to understand, they have to challenge their own personal philosophies on the subject and then become so strong in the new accepting ones to battle the philosophies of their profession.