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Empaths on the Autism Spectrum, part 1

October 9, 2011

Can I do this job?

In early 2006, I got a job working as an academic liaison for a group of 22 college-aged students on the Autism Spectrum. My job was to help the students with all of their academic needs: scheduling, counseling, learning accommodations, tutoring, social services, transportation … I was hired to create a total support system under and around the students so that they could successfully attend college. Before the job started, however, I had some serious research to do.

I’ve worked with and tutored physically disabled and learning disabled people for most of my life, but I had almost no experience with  autism or Asperger’s Syndrome. I knew a little bit (Rainman, sigh), but not enough to be able to truly help. So I got every book on autism and Asperger’s Syndrome at the public library and every book at the community college library, and I started from the ground up.

After fifteen or twenty books, I understood a great deal about the symptoms, history, approaches, and confusion surrounding diagnoses of autism or Asperger’s, which are quite distinct on paper, but are often diagnosed based on what kind of funding is available for each condition in each state, county, or school district. This means that the same child could be diagnosed with autism, Asperger’s, or PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), depending on the supportive services available at the time of diagnosis.

Though autism and Asperger’s (and PDD-NOS) are presented as very different (though related) conditions, they are often mixed-and-matched by doctors, disability counselors, and schools, which is why I now use the term Autism Spectrum (and usually just Spectrum) instead of focusing on the subtypes. You can miss a great deal of crucial information about  individuals if you focus on a diagnosis that currently exists in a political battle zone.

2012 update: I now use the term autistic and autistic person, in deference to the civil rights workers within the Autism community who do not want to be called “a person with autism” or a “person who has autism,” (and definitely never “a person suffering from autism,” gah!) because it treats autism as a disease and suggests that autism could be separated or subtracted from them. Instead, they prefer the neurodiversity-positive autistic or autistic person.

I learned a great deal on paper about Autism Spectrum conditions, but what jumped out most significantly for me was the repeated assertion that autistics are not socially adept because they are “mind blind” and therefore unempathic. This hypothesis is championed by British psychopathology professor and researcher Simon Baron-Cohen, who theorizes that Spectrum conditions involve a lack of function in the mirror neurons that allegedly help us empathize with each other. Hmmmm.

As an empath — or a person who is aware that they read emotions, nuance, subtext, undercurrent, social space, relational behaviors, and gestural language to a greater degree than is deemed normal — I was a little bit unnerved. I wondered: Will I be meeting people who are my diametric opposites? Will I disturb or unsettle them with my overabundance of empathy? Will they feel unsafe and alien around me — or will I feel that way around them? How should I behave? Can I do this job?

As it usually happens with marginalized populations, the information I received from the academic and counseling-based books only gave me a small piece of the whole story. Those books were merely describing autistic people from the outside, so I went back and got books by autistics themselves (such as Donna Williams, Kamran Nazeer, Temple Grandin, and Sean Barron). These stunning autobiographies helped me understand more about how painful and confusing it had been for these people to grow up in what is called the neurotypical world.

Oh, how neurotypical of you

In order to avoid labeling autistic people as damaged or abnormal, the word neurotypical was coined in the Autism community to refer to people who were once called normal. (An aside: My father says that Normal people are the ones you don’t know very well yet.) The word neurotypical performs a kind of protective function that — in theory — neutralizes harmful language and treatment that might otherwise be directed at autistics.

However, social behavior that is considered correct in the majority neurotypical culture (eye contact, speaking in turns, paying attention to what neurotypical people think is important, etc.) is called neurotypical too, which is really another way of saying that this is the expected and correct behavior. Using the word neurotypical as an adjective (neurotypical behavior, neurotypical gesture, etc.) is really not neutral in practice. It’s actually kind of oppressive.

I saw this almost immediately as I met with each student and his or her parents. The students were often coached — right in front of me — on how to behave, what I wanted to hear, how I wanted to be addressed … and this made me very uncomfortable. I heard a few of the parents use the word neurotypical as a kind of slam: “A neurotypical wouldn’t ignore a direct question, so wake up!” Ouch! I continually wondered, just who is unempathic here?

The concerns I had before I met these students really faded away as I witnessed constant (well-meaning?) insults to their personhood and dignity, and their tremendous struggle to find a way to belong in the neurotypical culture. Within a day or so, my new focus was on how to shield them from the everyday oppressions of neurotypical expectations. I began to talk about neurotypicals in joking ways: “Oh, how tedious and neurotypical that is!” Or I’d affect a Homer Simpson pie-loving voice and say, “Mmmmm, Asp-burgers!” as if it were the most delicious condition to have. It was a good laugh getter.

But more than that, it was an empathic entryway into the world of these students, who I almost immediately called my friends. These were people struggling mightily to live in a world where they weren’t welcome, understood, or in many cases, seen as real human beings. The mind-blind, unempathic caricature is a case in point.

The mind-blindness of everyday people

I knew from my early reading that autistic people were allegedly mind-blind — that they didn’t have a functioning idea of the “otherness” of people, which meant that they thought everyone knew what they knew, liked what they liked, and thought how they thought. This mind-blindness, so the story goes, meant that autistic people were unempathic, since the current and very simplistic definition of empathy is the capacity to feel (not think, not surmise, not guess, but feel) what another person might be feeling (if you’re interested in a more nuanced approach to empathy, primatologist Frans de Waal has a much better and more useful nested definition).

In my first few days with my new friends, I looked everywhere for this mind-blindness and this lack of empathy — but I didn’t find either one. I didn’t see any lack of sensitivity; in fact, I saw hypersensitivity — painful hypersensitivity. And I didn’t see mind-blindness either; instead, I saw a continual, time-lagged confusion about what was going on with and between neurotypicals.

I understand this confusion very well, because with my overabundance of empathy, I often find neurotypicals frustrating and emotionally incomprehensible. Here’s why:

The following are normal everyday behaviors among neurotypicals: lying about their feelings; avoiding sensitive subjects that are glaringly obvious; leaving important words unsaid; pretending to like things they don’t like; pretending they’re not feeling an emotion that they’re clearly feeling; using language to hide, obscure, and skirt crucial issues; attacking people who frighten them without ever realizing they’re full of fear; stopping all forward progress on a project without ever realizing they’re full of anger and grief; and claiming that they are being rational when huge steamy clouds of emotion are pouring out of them. Neurotypicals are often emotionally exhausting.

And here’s the big ugly secret: Neurotypical behavior isn’t empathic — in fact, it’s often counter-empathic and filled with noise, static, emotional absurdity, and confusion.

But even amidst all of this static and confusion, many of my autistic friends were achingly, scathingly aware of the social world around them. I mean hilariously, dead-on aware, if you would only listen to them. In fact, they were as uncommonly aware of the social world as some of my wildly empathic friends were. What I saw in these people was not a lack of empathy, but a difficulty in dealing with an often-overwhelming sensory onslaught, from the outside world, from their struggle to decipher neurotypical social absurdities, and from inside their own brains.

My autistic friends were incredibly sensitive to sounds (especially very quiet sounds that many neurotypicals can ignore), colors, patterns, vibrations, scents, the wind, movement (their own and that of the people around them), the feeling of their clothing, the sound of their own hair and their breathing, food, touch, numbers, animals, social space, social behavior, electronics, the movement of traffic, the movement of trees and birds, ideas, music, juxtapositions between voice and body movements, the bizarre, emotion-masking signaling neurotypicals call “normal behavior” … many of my friends were struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be stopped, bargained with, ignored, moderated, or organized.

In short, my autistic friends were overwhelmingly, intensely, unremittingly, outrageously empathic — not merely in relation to emotions and social cues, but to every possible aspect of their environment.

My friends were essentially on fire most of the time, and this often created a great deal of emotional turmoil, as you can imagine. However, because they struggled with communication and socialization, it was hard for my friends to address or deal with their often intense reactions. Some would completely withdraw, some would try to connect to others by launching into monologues, some would engage in “stimming,” which is a repetitive action that can bring some sense of peace and control, and others would lash out. Being on the Spectrum is a very difficult thing when the world around you — with its constant noise, confusion, emotional inconsistency, and demands for attention — is built for neurotypicals who aren’t aware that everything is engineered for their comfort.

The mind-blindness of neurotypical privilege

The lack of awareness neurotypicals have — their blind acceptance of their world “the way it is,” without concern for the needs of others — is called privilege in sociology. For example, a young white man who lives in Northern California in 2011 and states that racism is no longer a problem is speaking from the ignorance of racial privilege. He may not be cruel or inherently racist himself, but from his social location, he cannot see or experience any direct racism; therefore, he mistakenly infers that racism doesn’t exist. Privilege is a form of mind-blindness that is, sadly, absolutely common in neurotypicals.

Neurotypical privilege relies upon the same unaware and insufficient reasoning as racial privilege does: So if I don’t experience the sound of the dryer next door as being extremely loud, then it shouldn’t bother you, and you certainly shouldn’t start rocking, flapping your hands, hitting yourself, or pulling out strands of your hair in order to deal with the aural overload. Or, if you know two people who have been fighting for months on end, and you clearly understand all of the issues that they’ve been ignoring, then you should never, ever speak aloud about it, because that’s not how we do things! It’s rude! Wake up and act like a neurotypical!

What? Ouch! This “normal” social behavior — this insensitive and emotionally incongruent behavior — is only deemed normal because neurotypicals agree that it is. Neurotypical social behavior isn’t objectively correct or better than any other way …. in fact, neurotypical functioning is tremendously problematic, and as I wrote above, it is often deeply unempathic as well.

Neurotypicals who learn to manage in the social world aren’t displaying signs of superior mind-sight, functioning mirror neurons, or a healthy dose of empathy. Neurotypicals — for whom mind-blindness and a lack of empathy are common, everyday behaviors — learn to manage because the neurotypical social world was created by them and for them.

Furthermore, this idea about mirror neurons being healthy in neurotypicals and unhealthy or deficient in autistic people … it’s only a hypothesis; it’s not a fact. Mirror neurons are not fully understood yet, and it’s not clear whether the original findings in primate studies actually translate into human neurology. This 2008 paper points out eight problems in the mirror neuron hypothesis, and researchers are working to get to the bottom of the real story.

In 2010, neuroscientist Ilan Dinstein and colleagues performed an fMRI brainscan study on 13 autistic adults and 10 neurotypical adults to test whether the mirror neurons of autistic people are deficient, but he didn’t find any evidence that they were. The mirror neurons in the autistic adults were normal. You can see a video about the study here.

Dr. Marco Iacobini, a neuroscientist at UCLA who is a vocal proponent of the mirror neuron deficit hypothesis, thinks that a study with a total of 24 people isn’t large enough to draw conclusions from, but Dr. Dinstein disagrees:

Dinstein stands by his team’s conclusions. The number of participants he examined is typical for brain imaging studies, he says, and their autistic participants, though high-functioning, possessed the most extreme form of autism spectrum disorder, not milder forms such as Asperger’s syndrome.

He supports a different theory for autism: that it is the product of “noisy brain networks” that don’t communicate as predictably as those in normal people. He says his latest study offers support for this, as his team noticed more variability in the brain activity of people with autism, compared with controls.

He plans to probe this theory by searching for noise in other brain areas in people with autism. From NewScientist.

Noisy brain networks. Overwhelmed by incoming stimuli. Hypersensitive. Or, as I said above, “… overwhelmingly, intensely, unremittingly, outrageously empathic — not merely in relation to emotions and social cues, but to every possible aspect of their environment.” It seems that the real story of the Autism Spectrum is yet to be told, and you know what? It’s not going to be told by neurotypicals unless they learn to check their privilege at the door.

Here’s something that might help. This video is an awesome invitation into the inner life of a non-verbal autistic woman named Amanda Baggs (she posts on YouTube as silentmiaow). Her website is here (thanks to Rachel Cohen-Rottenberg for linking me to Amanda).

In the first part of the video, Amanda shows you her non-verbal language and the way she interacts with her environment. In the second part, Amanda uses a program that interprets her typing into speech so that she can explain her native language to neurotypicals.

Amanda writes: This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.

Amanda’s mastery of both languages is awesome, as is her ability to explain the “constant conversations” she has with all parts of her environment. This is a powerful commentary on neurotypical privilege — and it’s a real lesson in empathy.

In part 2: Speaking directly with Simon Baron-Cohen.

This essay first appeared on the site AutismandEmpathy.com, a wonderful advocacy site created by Rachel Cohen-Rottenberg. If you know or anyone you know is autistic, you should got to AutismandEmpathy.com!

65 Comments

Sue October 10, 2011 at 1:05 am

Hi Karla,

Thanks so much for this fascinating post. I’m looking forward to hearing more about your experiences. I *think* I am an empath … at the very least I am a highly sensitive person. My partner *we think* is Asperger’s, so this post really resonated for me 🙂

Karla October 10, 2011 at 4:52 pm

Hello Sue! Thanks for your response. Welcome to a fellow empath!

On the sidebar in the Tags section, there’s a tag called Empathic Skills. You may want to browse through those posts for some help in dealing with the various issues we empaths face.

In tomorrow’s post, I have a link to a site where you can take a test to find your autism score (though, of course, it’s not definitive!). It will be interesting to see what you get!

Karla

Beth Spencer November 3, 2011 at 5:18 am

Thankyou Karla, what a great article! I’ve been very interested lately in the connection between strong empathic traits, high sensitivity, and CFS (chronic fatigue syndrome). And in exploring these links I’ve often felt a kind of kinship with some people on ‘the spectrum’, which seemed odd given the stereotype that people with aspergers and autism lack empathy (as it’s often defined).
Look forward to reading more of your work. (Do you have a kindle edition of your book on Emotions in the pipeline?) best wishes, Beth

Karla November 3, 2011 at 4:29 pm

Hi Beth!

Yes, empaths are usually also highly sensitive people (as are people on the Spectrum!). It’s fascinating that the stereotype of Spectrum people as unempathic is so strong. What backward people we humans are sometimes!

About the Kindle version: Yes, the book is available as a download. This page has a link to the digital version: http://karlamclaren.com/bookshop/books-and-audio/

Karla November 3, 2011 at 4:33 pm

Oh, Beth, thanks also for your note about the problems on Facebook with linking to articles here. I also have the problem, so I’m having my programmer check it out. It’s only on FB: I can link from Twitter and G+ just fine, so there’s a communications problem between FB and this site.

Don Browne November 13, 2011 at 1:59 pm

Regarding the Amanda video, there seems to be some controversy whether Amanda Baggs has created a hoax and is not really autistic. Info: http://abaggs.blogspot.com/

Karla November 15, 2011 at 4:39 am

Hi Don, thanks. I was wondering why Amanda seemed to have disappeared after that video went viral, but I thought it might have been that people were attacking her. I read through that site, which seems to be primarily hearsay, but there’s enough troublesome info there (and the video isn’t integral to the piece) that I’m going to delete it and alert the person who first published this post.

Rachel November 15, 2011 at 4:19 pm

Karla,

Amanda has not disappeared by any means. She blogs at https://ballastexistenz.wordpress.com/. And this “controversy” about Amanda is completely manufactured. I’m quite upset that you disappeared her from this piece rather than investigating what the woman has to say about herself, and what others have to say about her. She’s quite articulate on her own blog, and a quick Google search leads to this article in which she is featured:

http://byliner.com/david-wolman/stories/the-truth-about-autism-scientists-reconsider-what-they-think-they-know

A number of disability rights activists have worked with Amanda and respect her immensely. I have had nothing but excellent dealings with her, and I give her a lot of credit for continuing to speak out in the face of immense hostility.

I understand your concerns about publishing something questionable, but when dealing with autistic and otherwise disabled people, it’s probably a bad idea to remove the person’s words from a post first and ask questions later. We’re pretty used to be silenced, and doubted, and told that we’re not really autistic or disabled when we break people’s stereotypes. We’re dismissed far too often, and that’s exactly what you’ve unintentionally acceded to here. I would have preferred that you had left Amanda’s video in the piece and emailed me about what was going on, as I could have given you some information about it without Amanda’s words being silenced. I hope you will return the piece to its original form.

Karla November 15, 2011 at 6:46 pm

Hi Rachel, thanks for being a reliable insider. I’ve restored Amanda’s video. You’re right that I should have contacted you first, and I appreciate the way you’ve articulated your anger and disappointment. The interwebs are fully of nasty stuff, and I try everyday not to be a part of spreading any of it, but clearly, I got some shit on my shoe and tracked it into the house.

Thanks for being an awesome resource. I think I’ll leave the denier comment up, because people are going to come across it in other places and maybe not have any idea about what’s going on — as occurred for me. It’s good to have the rebuttal here.

And it makes a wonderful point about neurotypicals being, sometimes, absolutely and inexcusably crap at empathy.

Mark May 9, 2012 at 7:19 pm

This article explains why when I called people on what I saw in their faces or body language, I was always told I was wrong. This article is a game-changer for me and my wife. I am an HFA and she is a Super NT (Empath). We write a a blog (like everyone else, 🙂 ) on our experience with my Asperger’s and our miscommunication. You’ve just cleared up my frustration over thinking I was crazy because I thought I was reading people wrong. Thank you.

Mark and Michelle Hedges

Karla May 9, 2012 at 7:39 pm

Hi Mark, thanks for writing! Are you connected at all to the autistic self-advocate community? It’s a wonderful resource that is working to present autism as a function of neurodiversity. During all that Autism Awareness noise last month, with the dehumanizing puzzle pieces and disease rhetoric, I hung out with the cool autistic people! Here are a few sites you might like:

The Thinking Person’s Guide to Autism

The Autistic Self Advocacy Network

And here’s a wonderful piece by my friend Steve Silberman, who’s writing a book about autism and neurodiversity.

I hope you like them!

Linda Fisher August 9, 2012 at 6:04 pm

Read your story Karla and your experiences remind me so much of my son. As a young boy he always seemed to walk his own path but following the divorce of me and his father he seemed to spiral. Thinking it was the divorce, I took him to a counselor then a psychologist and he was diagnosed all over the board: bi-polar, depressed, OCD, etc. None of this has ever really seemed to be him. He’s not depressed, he’s concerned and worries far more about others than himself. His ‘OCD’ is actually a way of self-soothing, as well as his need to avoid certain fabrics, environments and people. He’s extremely sensitive and insightful regarding other people and I always felt that his reclusiveness was not so much a desire to be isolated but to keep from being overwhelmed by all that he saw, felt and perceived. We finally went away from doctors and embraced who he is: a highly intelligent, loving and intensely insightful young man. Thanks for your sharing your experience, Linda

Karla August 9, 2012 at 8:26 pm

Linda, how lucky your son is to have you. Vive la difference!

The new neurodiversity movement is very interesting to me, and it’s something your son might enjoy learning about. It’s a bit controversial, but since you’ve already decided to focus on him as an individual rather than trying to change him into someone he’s not, I think you’ll appreciate it: http://mikestanton.wordpress.com/my-autism-pages/what-is-neurodiversity/

Susan August 27, 2012 at 3:46 am

Thank you for calling attention to empathic abilities of autists.
The Intense World Syndrome-an alternative hypothesis for autism Henry Markram, Tania Rinaldi, Kamila Markram
Frontiers in Neuroscience November 2007 Vol 1 issue 1
may be interesting to you.

Karla August 27, 2012 at 5:49 am

Thank you Susan, yes, I’ve read it and I like it! It’s a far more empathic and thoughtful take on the real interior lives of autistic people, and more robust than SBC’s basically pathologizing approach.

Butterfly September 12, 2012 at 6:01 am

Finally.. things that we ASD-folks discuss on our forum
..And still most wonder if what they sense is normal! So sad!

I notice it in my clients, working as a SALT & sensory input therapist, but also in myself (Aspy). First I was denied being tested: you work with kids, even teach them language and social skills..!! Than after the initial test which showed definite signs on all 3 levels.. So I found my own way!

What happens if you constantly get pointed out how you should react: uncyclopedia..http://uncyclopedia.wikia.com/wiki/Neurotypical_syndrome thru the eyes of ASD..
It has a bit of a sting..

Books I love: Olga Bogdashina’s book on autistic sensory input. And the 2 books from Carol Stock Kranowitz (out of sync kid) It explains more of the background, why are we different..

Please let everybody be different, be themselves. Respect each other..
And it is ok to look at the behaviourisms, but dont judge.
Ask yourself what might have caused that behaviour, stick with the facts.. don’t interpret! Behaviour = communication! So please don’t tell anyone to do/be different! Learn to read the other person instead of taking the easy route.. That’ll help and get rid off future behaviourisms far easier 😉
Love,

Karla September 14, 2012 at 5:43 pm

Thanks Butterfly! I love your respectful and empathic approach. Have you seen the writings of Julia Bascom at Just Stimming? I think you’ll really like her work. Here’s one of my favorite posts, Quiet Hands: http://juststimming.wordpress.com/2011/10/05/quiet-hands/

Karla September 14, 2012 at 5:52 pm

OMG – Neurotypical syndrome is hysterical! Let’s raise a whole buncha money to create a cure for it!!! We have got to stop this plague of NTs, or their bizarre emotional and social functioning might bring the world to the brink of ruin while polarized groups savage each other for no reason! (oh, wait) Sigh.

Susie September 19, 2012 at 2:39 am

Hi Karla,
I am a speech-language pathologist, who is trained in sensory integration, and I also have a learning disability and feel like, if tested, I could have Asperger’s. I have read your book “The Language of Emotions” and loved it! Your interest and input in Autism is much needed not only for the entire communication, but on a more personal not for me as a professional as well as an everyday human being. I often have trouble with being an empathist. I can’t tell if I was always like this or if I became like this. Not sure if that’s makes any sense to you… but where I am I going with this is.. what can I do or read to help with becoming a more empathic person? Or do I have to wait until Fall 2013? 😉
Thank you in so many ways!!!

Karla September 19, 2012 at 3:22 am

Hi Susie, and welcome to the empathy and autism spectrum! I’ll be posting excerpts from the book here and on my Facebook page, so there will be pieces available before next year. In fact, over on my Facebook page, I just posted my list of the 6 different dimensions of empathy, which I’m using as a frame for the book.

I also posted my definition of empathy, and my definition of an empath, and I’ll paste them here:

Empathy is a social and emotional skill that helps us feel and understand the emotions, circumstances, and needs of others, such that we can offer sensitive, perceptive, and appropriate communication and support.

An empath is someone who is aware that he or she reads emotions, nuance, subtext, undercurrent, intentions, social space, interactions, relational behaviors, body language, and gestural language to a greater degree than is deemed normal.

Did you read this piece by autistic advocate Julia Bascom in Psychology Today? It’s wonderful: Respecting Autism

Eric November 27, 2012 at 7:54 am

Hi Karla,

I am a Singaporean with a diagnosis of Autism Spectrum Disorder. I now conduct psychological assessments, and have read up on many topics including science, psychology and spirituality due to my personal interest. I also have my own unusual experiences, so I am aware of the many issues you raised.

After I have reconnected with my emotions and instincts so that I could connect with others, I thought that I was the only person who has managed to do so and felt that I had a duty to share my discoveries with the world, and to build a bridge between the NT and Aspie cultures.

I now realize that there are other people who have achieved what I have done, as well as many varieties of autistic consciousness which can be different from my own experience.

I also have my doubts about theory of mind and some the mainstream theories, and I did my best to explain my best theories from my own experiences.

http://iautistic.com/autism-theories.php

I am glad to read your refreshing perspectives, including that of Dr. Temple Grandin. I came upon this article while reading up about you, and the courageous decision you made in 2003.

Thank you for your sharing and your courage!

Karla November 28, 2012 at 10:23 am

Eric, thank you for your kind comments!

Isn’t it amazing, how many autistic people are standing up and going – Hey! I’m a human with empathy and emotions!

I love it! Have you connected with ASAN yet — they’re the Autistic Self-Advocacy Network, and I think you’ll really enjoy their approach.

Cheers!
Karla

Carrie January 25, 2013 at 5:35 pm

Thank you Karla! I am an HSP (Highly Sensitive Person) and an Empath and my partner is, we think an Aspie. In spite of how well I tune into her, we have had many misunderstandings and she doesn’t always understand me. However, she says that she feels more connected to me than she has ever felt with any partner she has been with. I personally feel that is because we are twin flames, but that is another subject altogether. Unfortunately my Honey has been left or cheated on by everyone she has ever been with too (and I haven’t had such an easy time either) so we are working on trust issues.

In most everything we have read thus far on AS, it seems it is talked about as if it is a handicap, but like you have pointed out, it seems that NT’s have more of a handicap than anyone on the spectrum.

Thank you so much for sharing your work. I look forward to reading more!

Monique February 13, 2013 at 4:12 pm

Hello Karla,

I have been learning so much from your blog and your original CD on Energetic Boundaries. Thank you very much for being so thorough and thorough in what you put out there.

A question, is it possible for someone to be both Neuro Typical and exhibit signs of Autism, soothing behaviors, extreme sensitivity to fabrics, sounds, smells and high need for routine? For example the person sees ‘their sensitivity’ to be the ‘right’ one and completely discounts how another’s feelings and vehemently denies another’s sensitivity to particular sounds or smells.

Your thoughts would be appreciated.

Monique

Karla February 13, 2013 at 7:41 pm

Hi Monique,

I’m neurotypical, but I’m as hyperempathic as an autistic person, plus I stim and rock, I love systems, and am highly sensitive to everything. Autism exists on a continuum, and neurodiversity advocates point out that many of the traits of autism are ones that typical people get shamed out of.

You can see the shaming right out in the open if you do a “breaching experiment,” which comes from sociological research. Breaching is breaking a social rule — and if you do it right, you can see the underlying emotional rules that are at play, but are usually hidden. I did a breach inadvertently the other day at Safeway — I was holding a bunch of groceries in my arms and waiting in line, and rocking without even noticing it. Then the back of my right leg itched, so I reached up with my left foot and scratched it. A woman behind me said out loud, “Boy, you sure are fidgety.”

Hah! Get your grimy shaming attempts off of my body, lady.

The vehement denier you refer to may be trying to get the sensory-aware person back into compliance with unstated soci-emotional rules about what “normal” behavior is. There may be an unconscious and unaware, but well-meaning, intention to help the sensory-aware person fit in better. However, it isn’t helpful.

It might be helpful to bring in the books on The Power of Introverts and the Highly Sensitive Person series to bolster the sensory-aware person’s position as a valid kind of human being.

I hope that’s helpful! Rock on!

Monique February 16, 2013 at 10:01 am

Karla,

Wow, thank you for such a graphic example of your experience in the Safeway (interestingly name isn’t it?).

I have continually been told “you are so sensitive” in a emotionally crushing way. As an attempt to get along in these recent years I diminished my sensitivity to the point I no longer became bother by because I couldn’t feel certain energy frequencies but learned that it also shut down my higher frequency sensors. I felt like I was walking in a fog all the time. Fortunately I am coming out it but as a result the sensitivity is switching back on in full.

Interestingly, just this morning when I awoke I smelled something in the home (not physical smell) and felt allergic symptoms to it and immediately tried to talk myself out of what I was sensing because it couldn’t be understood by the other family member. Is it possible to become allergic to the energetic frequency of something?

You provide such an amazing service, thank you! I am thinking of coming to your April event in Berkley it looks like it will be very healing.

hugs dear another,

Monique

Karla February 16, 2013 at 11:03 am

I remember when a shift happened for me — when yet another person remarked on my capacity to identify emotional situations with, “Yeesh, you’re so sensitive.” My anger stood me right up, and I looked the person in the eye and said, “I’m exactly as sensitive as I need to be.” Without violence, just certainty. This is who and what I am.

I think many of us gravitate toward (relatively) insensitive people in the hopes that we can upload their approach to the world. Nope. But if you’ve got a relatively insensitive person in your life who is respectfully aware of the differences between you, and who recognizes you as an unusual specimen, then there doesn’t have to be any undue conflict. However, if the relatively insensitive person thinks erroneously that his or her way of being is the default setting — and that everything else is some kind of aberration, then yuck.

In my new book, I’m focusing on the quality of relationships for empathic and sensory-aware people, and the upshot is that they’re crucial for health and well-being. For an empath, whose natural habitat is relationships, unsatisfying or incompatible relationships are very destabilizing!

There’s a wonderful and embarrassing book that I suggest for all empaths, called Are You the One for Me? by Barbara de Angelis. It’s a game changer, but yeesh, it’s a relationship book, and oy. However, this woman knocked it out of the ballpark.

Monique February 16, 2013 at 11:25 am

Karla,

I recall when I did and said something very similar “I am sensitive and I want to remain so!” Over time the insensitive person has come to respect and allow that sensitivity but still a huge part of me is unable to relax and let go in their presence.

What an interesting phrase “for an empath whose natural habitat is relationship” I had no idea, but as I read it — it is so true for me. Your book sounds amazing as I know all too well how destabilizing it can be when someone denies “your experience of reality”.

Thank you again for the confirming my ‘sensitive reality’ and the book recommendation!

Monique

Betsy April 2, 2013 at 11:56 am

Wow, this is cool.
Learning about autism helps me embrace and “feel into” my own
highly sensitive, empathic nature much more deeply. For most of my life I have denied,hated, feared and rejected it. At the same time, I always felt that I was living somewhere VERY NEAR the autism spectrum…so terribly sensitive and confused. I am glad awareness of autism is now entering my field…sounds like it would benefit me to spend some time here. Thanks Karla!
~Betsy

Bill April 2, 2013 at 12:05 pm

Thanks, Karla, for this post. Really helped me feel more compassionate towards those who have autism. And it’s right in line with what I’ve been learning recently about our own sensitivity and how most of the ‘neurotypicals’ are DEsensitized and therefore stupid-heads. :p

Karla April 2, 2013 at 2:38 pm

Yeah Bill, the over-stimulation that has become normal in everyday life is ridiculous. There are now “autism-friendly” days at some malls, theaters, and some Broadway shows, where things are quiet and lights are soothing and people can sit on the floor — and I’m all, “Hey wait, I want autism-friendly everything every day, everywhere.” Yes!

Bill April 2, 2013 at 2:43 pm

Haha, that is awesome. I would totally love that! They should just be called ‘human-friendly’ days.

Dorothea April 6, 2013 at 1:27 pm

Amanda’s video leads me to ask if you know of the language of Sacred Geometry, and how that might fit with learning the languages of Autism.

Karla April 7, 2013 at 7:26 pm

Hello Dorothea, no I don’t know about the geometry languages. But the work of understanding autistic people isn’t that hard, really. You just ask them! One of my favorite information sources is Karla Fisher, who runs Karla’s ASD Page on Facebook. She’s got pages and pages of astonishing information about autism from a real-world perspective, and she’s got the goods. She is autistic and she works with autistic youth and adults in the Portland area, and she’s amazing.

strollingturtle August 27, 2013 at 10:33 am

Wow Karla….I always enjoy and appreciate your posts, but for some reason this one in particular really hit the ball out of the park for me. Reading as you share your journeys of learning always resonates with me. I so appreciate your ability demonstrated in your responses to comments on this post, to take in the criticisms that appear inevitably in some of the comments, and rather than become defensive and threatened, see what there is to learn in them. What wonderful model for us all! As for the content of the post itself, what a paradigm shifter it is for me. I’m still not sure how much of an empath I am, though I’ve heard the “you’re too sensitive” comment for as long as I can remember. Also I appreciate your talking about the autism spectrum and the fact that NT’s can also share certain of those characteristics…like a rainbow…we’re all in there somewhere…just different facets of the whole…Thanks for all you are doing and sharing to help interested people learn and grow. Cheers!!

Karla August 28, 2013 at 9:57 am

Thank you so much, strollingturtle. I’m finding, as I go along, that many of the most interesting things happen during conflict — if I can just lean in and toward the person and work to hear what’s happening. It’s fun to have conflicts with people like Rachel, above, because she’s ethical and focused, and she doesn’t just shout to hear herself shout! As we who play on the internet know, many people haven’t got the slightest idea about how to work with their anger (or most emotions), and they don’t make it easy for anyone to respond or lean in. I’m lucky that the people who come to my site are cool — like you!

Sandy October 23, 2013 at 2:42 am

Hello Karla,

Just stumbled upon your site and boy does it resonate with me. I’ve also read your comments and love how you are able to address each issue with confidence, skill, humor and honesty. Love the concept about leaning into conflict with people except it wouldn’t work if you were dealing with a passive/aggressive person or someone who is covertly aggressive. Most people that I’ve run into (myself included) who revert to unhealthy ways to handle conflict lack communication skills and are unskilled at handling the conflict when it occurs (due to fear). I need to embrace my anger and learn to use it in healthier ways to address conflict and create healthy boundaries.

I have a question? I would consider myself to be hypersensitive and highly intuitive. I do feel bombarded with too much stimuli, noise, confusion and the emotions of others. Even too much time with technology makes my brain too wired so I need to detach from electronics on a regular basis. It’s important for me to retreat to a quiet space so that I can get in touch with my own emotions and not confuse what I’m feeling or picking-up in another person. I’ve been diagnosed as having ADD, and a mild case of bi-polar. Most individuals that I know with bipolar are highly creative, intuitive and have difficulty deciphering what emotions are theirs or other people. I’m wondering if all of these labels are a way to categorize people who are nervous systems get out of control with too much stimuli? I know it sounds simplistic but wonder if it’s all related to our nervous system and the way our brains are wired?

Karla October 23, 2013 at 9:47 am

Hello Sandy, yes, I find that people with ADD and bipolar, not to mention other forms of depression and neurological difference, are often much more sensitive to pretty much everything. It’s a big focus of my work to help sensitive people learn to soothe and calm themselves, and make sense of all the input they receive. There’s also a book you might like, which I talk about in The Art of Empathy. It’s Richard Davidson’s The Emotional Life of Your Brain, and it offers direct support for people who are very sensitive.

Here’s a short explanatory piece about it: In the book itself, there are actual practices for people to address each of the six areas of emotional style, whether people are very strong in one, or currently not very aware in that area. It’s a very useful book and approach, and the upshot is that we can affect our neurology for the better and make ourselves more comfortable. He’s very focused on Buddhist forms of meditation, and those are very helpful for many people, but there are other ways to achieve the same effects, and I talk about them in my book.

I hope that helps!

Sandy October 23, 2013 at 2:53 pm

Karla, Thanks for the suggested readings. I purchased your book today on Amazon.com. I already have an account there. Your blog is incredibly helpful and has a wealth of information that I can return to for great information. I’ll check out the other book that you recommended too. I’m sure I’ll be a frequent visitor here.

Karla October 23, 2013 at 8:48 pm

Thanks Sandy, be well!!

Mimi February 15, 2014 at 8:08 pm

Hi Karla, I love your writing and listening to you speak. This is bringing up a lot for me and I’ll tell you why. I dated a man on the spectrum. He was by all means intelligent, interesting, and a fine person. We had a good friend whose mom died prematurely when we were together, and I was also processing a recent assault. In both cases my then boyfriend said, “I’m sorry,” and then really went back to business as usual. I asked him what was going on for him. Did he even feel what he was saying? He said openly he didn’t feel anything at all, but he knew it was “right” to say he was sorry. I realize many people who are “there for us” can’t feel what we can feel, but to that degree? I felt he was so disconnected from me. I struggled with this, and in the end I couldn’t embrace it day to day. I’m coming from the perspective of someone who understands the word empathy to mean, to some extent, “I feel with you.” My former was in fact *very highly sensitive, and that’s its own gift but empathy was not his strong suit. So, this experience suggested to me that sensitivity doesn’t always translate to empathy, and I’m curious about your sense is of that.
Thank you.

Karla February 17, 2014 at 9:35 am

Hello Mimi! I write about this more extensively in the new book, and I’ve got some of excerpts of those pieces here. The first thing to look at is the concept of Einfühlung, which identifies empathy as the capacity to feel into anything, and not simply into humans. As a hyper-empathic child, I found human emotional behaviors extraordinarily frustrating, because they were so filled with detritus, confusion, deceit, self-delusions, and just plain clumsiness. I preferred to empathize with music, animals, books, art, nature, and my own mind and body. I shut down many emotions and my awareness of them around humans, because sheesh.

Some autistic people also experience a condition called alexythymia, which is a confusion about emotions, to the extent that naming them, organizing them, and feeling them can be somewhat fraught. But I have to ask how much of alexythymia is socially constructed in a culture where emotional awareness is so very sideways. A great deal of my work has been to create a functional systems theory of emotions so that they can be identified easily and clearly, and worked with gracefully.

When I talk about the Six Essential Aspects of Empathy in the book, I locate people on the Autism Spectrum as often being hyper-empaths who have extensive Emotion Contagion abilities but lesser Empathic Accuracy sometimes, and difficulties with Emotion Regulation. One of the premises in the thesis I’m working on now is that many autistic people grow up without these skills because people misidentify them as unempathic, and thereby shunt them away from the world of emotional awareness. What is interesting is how many autistic people use their often superior systems-thinking capacities to figure out human social and emotional behaviors on their own. I’m doing a study now to test that premise.

I developed my model of the Six Essential Aspects of Empathy to think about, identify, and support people on both ends of the continuum — those who are hyper-empathic, and those who have trouble getting into synch with others. One of the things I’ve noticed is that many people who are identified by others as unempathic are often hyper-empaths in burnout, or very sensitive people who have turned their empathic skills away from the maelstrom that is human emotional functioning, and toward things that offer a sense of calm and welcome. These can be anything, including math, computer programming, art, philosophy … when someone is presenting as empathic, I always look for the Einfühlung, and sort of walk through the Six Aspects to see where their empathy is directed.

I hope that’s helpful; it’s a long answer!

White Horse Medicine™ – Childhood hints at the Aspergers label March 30, 2014 at 9:10 pm

[…] In my case, as in many, many of the cases I read about online in other blogs and in the books I’ve found giftedness overshadows cognitive difficulties. And the ability to mimic and blend in socially corresponds with a hyper-empathy that at first blush seems the antithesis of the accepted lack of social empathy that so many assume is a part of the profile. Both on a gut level as an observer, and now in my own life I agree with researchers like Karla McLaren who propose that those on the spectrum are actually highly empathic. […]

Amanda May 27, 2014 at 1:46 pm

As an Aspie and an empath I couldn’t agree more with your assessment that those on the spectrum often have an over-abundance of empathy. Sometimes all the emotional noise is so overwhelming I go into overload and it’s like a switch is flipped, much like a circuit breaker being flipped off to save the rest of the system. I feel nothing. I only seem to have the two settings, everything and nothing. Nothing used to scare me a lot until I realized it was my normal and it would pass in usually just a few days when the rest of my system had recovered and I could again handle things. It’s a survival mechanism. I have wondered if encountering those on the spectrum in survival mode is where the erroneous idea that we lack empathy came from.

Karla May 27, 2014 at 2:28 pm

Hello Amanda — yes; that’s my hypothesis — that many of the people we erroneously identify as unempathic are actually hyper-empathic people in overload. Empathic burnout is a thing that neurotypicals recognize in themselves, but because of the continual dehumanization and pathologization of autistic ways of being, their empathic burnout is not identified for what it is.

I focus on this in my book, especially in regard to the concept of Einfühlung (this is the German word that is the precursor to the English word empathy ). The concept of Einfühlung helped me write my book and welcome people who have been exiled from empathy; especially people on the Autism Spectrum. Welcome, fellow hyper-empath!

Tara September 8, 2014 at 5:12 pm

Dear Karla,

I came across your blog last night from a friend’s Facebook Wall post. Bookmarked as an ASD resource. Even your comments section is uncommonly robust and is where I learnt a new word but found I have been familiar with the condition it describes for over 20 years: Alexythymia. Thank you for your research.

I’m writing from Singapore, an Empath, I have been called “over-sensitive” for as long as I can remember as if it were a bad word because I pick up hidden aggression under social niceties which I thought was a normal skill, with some sensory, food, substance and environmental sensitivities myself, parent of a teenager with classical autism, and formerly married to an Aspie who has not been formally diagnosed.

My child is highly sensitive as well, an antenna who picks up too many ‘stations’ but can’t filter them down to the conscious into meaningful terms which does not necessarily translate to empathy for others. I was well-versed in ASD in the earlier years and was trained in applied behavioural analysis.

Karla September 11, 2014 at 5:42 pm

Hello Tara, and welcome.

I’m seeing a strong connection between hyper-empathic people and autistic people. At this point, I’m considering hyper-empathy to be a hallmark of autism, and hypersensitivity to be at the root of many of the social and communicative aspects of autism. As i study the typical educational approach to autism in my master’s program (in education), I’m not seeing anything that formally takes this hyper-empathy and hypersensitivity into account. I and many others are working to change that!

M Stevenson February 25, 2015 at 9:53 pm

One of my best friends is autistic, and my adoptive brother most likely is in the spectrum. Both my friend and my bro share a profound capacity for empathy. Their empathy and perceptiveness of my inner thinking state is off the chart. I’m an empath, with PTSD. I struggle with feeling loaded down and misunderstood. They are both very easy to be around. Their emotions read so cleanly. There’s no subtext, no sharks in their water. Forget the labels, I think of them as “neuro-fabulous!”

Karla February 25, 2015 at 11:39 pm

Neurofabulous! It is awesome-tism!!

B. May 17, 2015 at 7:42 am

My son has severe ASD (also non verbal) & is GDD as well.
He is an Empath (like myself)
Any suggestions for helping him would be greatly appreciated. XO

Karla May 19, 2015 at 10:02 am

Hello and welcome. This page on autistic ways of learning may be useful for you and your son.

Lindsay November 18, 2015 at 10:30 am

What a fantastic post! Karla, you never cease to amaze and upbuild me! As I said in my previous comment, I’m autistic and hyper empathic, and so is my mother (though unlike myself, she hasn’t been officially diagnosed). She never saw anything unusual about my behavior as a little girl because I reminded her so much of herself at that age. It wasn’t until I was a teenager and there was a slight shift away from the ‘Rainman’ stereotype that I was finally diagnosed. But much of the research I did on autism was discouraging and just made me feel bad about myself – poor social skills? Mind blindness? And worst of all, lack of empathy? Was that really me? I went through an unfortunate period of denial for a while – trying to make myself into a (gah!) neurotypical. All that did was make me miserable, frustrated, and very depressed. Then it hit me – I was NOT a defective, unempathic person just because other people say autistics are. I then got books written by other autistic women and through their very familiar experiences began to truly understand and accept myself at long last. I no longer felt inferior or defective. Or alone!

Today I’m happy to be autistic, and so is my mother. We have always given each other lots of love and support while living in this neurotypical world. And we’re all too often struck by the sheer lack of empathy we see in so many NTs.

Thank you, Karla!!!

Karla November 18, 2015 at 3:33 pm

Thank you Lindsay! I’m so glad that you and your mom have each other, and that you’re enjoying your own unique selves.

This might make you laugh: Institute for the Study of the Neurologically Typical

And I saw this children’s book yesterday. So fun! Why Johnny Doesn’t Flap: NT is Okay!

mayo December 19, 2015 at 5:40 pm

I loved your article! I stumbled upon it when I was looking for articles on relations between HSP and autism and I’m very happy you wrote this. As a young woman diagnosed with autism at a very young age, I was always afraid that having autism meant I was selfish and had no emotions, based on all the stereotypes in the media. However I have always been extremely empathetic. I always needed to convince others that I was able to feel empathy towards others. Especially in my college years when I wanted to use my advanced social and empathetic skills in combination with diagnosis to my advantage by pursuing a career as a psychologist. My professors laughed at me and said I had to start facing reality because it was impossible for ‘someone like me’ to understand and relate to the feelings of others. I have coped with severe self esteem issues because of this and I wish more people could read this and will hopefully eventually ‘see the light’ on this.

Karla December 20, 2015 at 2:17 pm

Hello Mayo, and welcome. It’s so sad that you were stopped from doing what was calling to you. Ableism and prejudice are terrible things.

We really need more autistic professionals in psychology, oh my word!

Anonymous July 9, 2016 at 9:34 pm

And we have another one right here 🙋🙋🙋🙋 I’m going for my bachelor’s in psych and neuroscience right now. I’m a young woman who was diagnosed at a very young age as well.

Dominique December 20, 2015 at 10:17 pm

This Article was written for me. I relate with it deeply.

Since 2007, I have been in therapy for dysthymia, anxiety, anhedonia.

A few days ago, At 46 years old, I have been diagnosed with mild ASD by neuropsychologists. Not the Asperger type.

Please don’t let the “mild” water down the struggles i face.

I have been searching the web for articles i could relate to. Very few applied or made sense to me. I have no cognitive disabilities, scored high on IQ tests, no speech delays while a was a kid. Since ASD is a spectrum, it didn’t bother me much. My autism was just different.

But the part that saddens me, makes me angry, destabilizes me, is when i read about empathy, social cues, social skills, reading people body language, etc… that is lacking in people with ASD.

This is so not me. I am the opposite of it. I read people like books. I know things about them they don’t realize themselves. I am always hyper aware of my surroundings, observing, connecting, analysing. This happens at an unconscious level. The exemple i give to people is: try to look at a written sentence, but only look at the letters. Don’t read it. For someone who can read, this is impossible.

One could say it’s an immense talent. But for me, the downsides are too much to handle. They are real existential struggles and anxiety triggers.

Also i get overwhelmed by “loud” sensory inputs. But i manage. It is not as disabling for me as it can be for other people with ASD. But it gets tiring in social events.

The mind blindness and mind blindness privilege of neurotypicals (i don’t like this qualificative) are the parts of the article that resonate with me. During social gathering, I see errors of thinking, non-sense, over emotivity, cognitive biases, and so on. Always keep in mind that this is always happening automatically for me. i don’t focus on those. I just get hit by them.

So for self-preservation, i tend to isolate myself.

So what now? What should be my next step to live at peace? Therapy…

At this moment, I don’t see how therapy could help me. But i could be wrong.

Thank You for this article that resonates with me.

Karla December 21, 2015 at 1:23 pm

Hello Dominique, and welcome. Yes, extreme social awareness and empathy are often aspects of autism, especially for women and girls. If you haven’t found her yet, Amythest Schaber’s You Tube channel, Neurowonderful might be supportive for you.

There is also an international online community of autistic people who are supporting each other and creating new ways to approach and think about autism (plus women’s networks). Have you found them?

The Art of Empathy can also help hyper-empathic people develop practices and skills to support themselves in what can be a rather unempathic and over-loud world.

About therapy, I’m not sure. It would really depend on the therapist and his or her approach. It can help (anyone) to learn about their unique neurology; the key would be that the therapist comes from a neurodiversity paradigm rather than from the pathology paradigm. My colleague Nick Walker wrote about it here.

I wish you peace and support for your unique needs.

Elena June 4, 2016 at 1:41 pm

Hi Karla,

I know I am super late to the party, but I only just now stumbled upon this article.

As an autistic, I have been wrestling with passing/coming out, and what I have viewed as my failure in social interaction, and I really have to say, this article resonated with me very deeply. I chronically come away from social interaction confused and a bit teary because I feel I don’t understand what was going on, and assume it is some failure on my part. I think this description more accurately addresses the source of the confusion.

I had not considered that what is happening may be a mismatch between empathic awareness and the social dance playing out in front of me, but in retrospect, I think you hit the nail squarely on the head. This gives me a different way to work with the confusion and hopefully will help me to forge a path out of the default assumption that I am impaired. I think I can start to trust myself more… Thank you SO much for posting this.

Karla June 4, 2016 at 5:06 pm

Hello Elena, and welcome!

Something you may have heard of is “autistic spaces,” where people gather together and make autistic ways of being perfectly okay. Stimming, rocking, eye contact or none, special interests, talking or not, joining in or being on the periphery — it’s all fine. That’s wonderful.

It makes me so sad to see autistic people who struggle to fit into neurotypical norms, when they’re not very admirable norms in the first place! I’m glad that you’re reconsidering the idea that you’re impaired. NT culture is, objectively, meh!

Elena June 4, 2016 at 5:20 pm

Thank you so much Karla!

I actually just found a local organization that creates an autistic safe space here in Eugene and am poised to embark on that journey. It does mean the world to me, however, that there are people like you advocating for our cause and pushing back against what is generally a very judgmental characterization. I feel really fortunate to have stumbled on your site, and I am looking forward to reading more. Thank you so so much. <3

Susan August 24, 2016 at 3:11 pm

Thank you for speaking for us, Karla. I’ve just figured out, age 46, that I am on the spectrum. I haven’t yet read everyone’s comments, but will give examples of the extreme overwhelm in my life to maybe help someone understand or feel a little less alone… I can’t wander off in my own thoughts with my eyes anywhere near the direction of even the backs of people, without someone turning around and looking me in the eyes. It feels like being naked everywhere I go, cause people feel my presence and emotions, lots of people. And then, so commonly, people acting out insecurity, greed, impatience, etc feel like a train rushing over me, with its mind-blanking noise, earth-shaking, and disorientation. I don’t understand betraying people or getting enjoyment from hurting anything. Yes, I have the book-listed habits that I won’t go into …Perfect scenes for me = a hammock chair on a covered porch in wooded mountains, with a book; weaving a crown of flowers at a peaceful meadow and stream, with a friend or daughter; a rocking chair by a fireplace, with a big, white dog curled on the rug, shelves of books, and a built-in, curtained bed, one-room cabin. Thank you for your time. 🙂

Karla August 24, 2016 at 3:50 pm

Welcome Susan. I’m sorry that this world is so frakking noisy that you’re uncomfortable.

However, I like your perfect scene!

Lina October 10, 2016 at 3:09 pm

This made me tear up, because, Karla, “You get me! You really get me!” You get us!

I have had a few, sometimes excruciating, decades to hone my social (skills) mimicry almost to perfection…to my own detriment, because now convincing a medical (even psychiatric!) professional that I do indeed have Asperger’s is usually a battle. Like most Aspie women, I have become quite adept, but at the price of losing myself, of always having to make a choice between “them” or “me”, ie. between coming across as normal or being able to be myself. “Them” almost exclusively win out. What I project outwardly (my mannerisms, my initial responses to people/stimuli) is often the opposite response to how my instincts are screaming at me to act.

Today, my new gastroenterologist asked me SIX times during one appointment if I was sure that I had Aspergers; if I had been correctly diagnosed. He ended up mumbling under his breath that he didn’t think I actually had been correctly diagnosed. As frustrating as that is, it is what I have come to expect and I tried brush it off, especially considering his ignorance of the issue (for which I don’t blame him, since that is not his specialty).

However; I was quite offended, and the more I dwell on it, the more it offends me; I thought him incredible insensitive as he brushed aside the biggest tragedy that has ever happened to me – all because I have Aspergers!!!

He asked if I had ever taken Lorazepam and I told him that, yes, my GP had given me some two weeks ago, because I was a blubbering mess, unable to cope with my brother’s murder..and I couldn’t help fighting the tears as I told him. (Losing the person I have loved the most, with a pain so excruciating that it had me considering not living, was not something I wanted to share with him, especially since I was barely keeping it together, but he pried.) Not only did he down play what happened, but – moreover – he was then quite surprised at how upset I was and very much so at my need for medication, explaining…listen to this:…that people on the spectrum don’t have the ability to feel compassion!
This is who the conversation went:
Him: “…because autistic people don’t feel like that…that..eh..
Me: “Compassion?”
Him: “Yes! Compassion! They don’t have the ability to feel that.”

At the end of the appointment he laughed and said that most of what he knew of autism he had learned from the movies and TV, quoting “Rain Man” as a source! I really had nothing else to say after that.

I am, however, printing out your entire article, along with Tania Marshalls’ list of typical traits for Aspie women (a list which had me check off almost every single trait!) and placing the pages in his hand at my appointment next week!

So thank you for writing this!!

Karla October 10, 2016 at 8:15 pm

Hello Lina, and welcome. And oof what a mess with this doc. I’m so sorry that you had to go through this when you simply needed support and empathy. Yeesh.

But I have to say that the representations of autistic people in the medical literature are almost uniformly terrible and dehumanizing. So he may just be the recipient of rotten information. I hope he can learn!

It’s funny — on the Thinking Person’s Guide to Autism page today, there is an argument about the puzzle symbol (it signifies autism in many fundraising organizations). I think it’s creepy and dehumanizing, but some people were wanting to hold onto it because of tradition or familiarity. Your story is a good example of why the puzzle piece is not a worthwhile way to represent autism. You’re not a puzzle; you’re a person!

Welcome.

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