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Empaths on the Autism Spectrum, part 2

Continued from part 1

After spending just two weeks as an academic liaison for twenty-two people on the Autism Spectrum (and getting a sense for their inner lives), I started to observe my own behavior more closely. I’m very sensitive to sounds, colors, movement, and social cues — I love patterns, numbers, and being alone, and I have intense (often excruciating) empathy. I wondered: Am I on the Spectrum?

I went home from work one night and took this Autism Quotient test, and got a score of 15:

Your score: 15
0 – 10 = low
11 – 22 = average (most women score about 15 and most men score about 17)
23 – 31 = above average
32 – 50 is very high (most people with Asperger Syndrome or high-functioning autism score about 35)
50 is maximum

Hmmm. Okay, so I wasn’t on the Spectrum, but I also wasn’t (as I had feared before I started the job) at the opposite end of the empathy Spectrum from my students. And yet, I could not reasonably call myself neurotypical either, since my empathy has — throughout my life — set me so far apart from average people. I continued to witness unmanageable empathy and sensitivity in my students (whom I now called my friends), tried to figure out where it fit in with the reigning theories about the alleged lack of empathy among autistic people, and went forward with my job.

My husband was accepted into a Master’s program in Nursing, and we moved away from that job within a few months, but I didn’t stop thinking about my friends on the Spectrum, about neurotypical privilege and mind-blindness, and about the subject of empathy.

Reclaiming my empathic title

Three years later, in 2009, I was asked to rewrite one of my books on emotions. This is a longer story, but I had worked for many years as an empathic healer, and had mistakenly framed my skills as paranormal or psychic. When I realized my mistake, I ended my career (in 2003) and returned to college to study sociology, social movements, and, well, everything.

I now understand why it was so easy to think that my empathic skills were mystical. Strong empathy (this is usually called hyperempathy) is very unusual, and neurotypicals are deeply confused about emotions and empathy; therefore, my hyperempathic skills were seen a magical thing. After studying intently and reorganizing my understanding of empathy, it was very nice to come back, rewrite my book from a non-paranormal viewpoint, reframe my work, and reclaim my title as an empath (in part 1 of this post, I described an empath as 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).

As a part of the research I did for my book (The Language of Emotions: What Your Feelings Are Trying to Tell You), I read a book by two autistic people: Dr. Temple Grandin and Sean Barron. Their book, Unwritten Rules of Social Relationships is a fascinating look at two individuals who have very different experiences on the Spectrum.

photo of book coverSean Barron is a male whose inner experience of autism has been extremely emotional, while Temple Grandin is a female who reports that her inner experience was and is primarily unemotional. This book is nicely balanced by Barron’s emotional perspective, and together, he and Dr. Grandin provide an excellent portrayal of what autistic people deal with emotionally and psychologically.

It’s a great entrée to understanding both the Autism Spectrum and the ways that neurotypicals intuitively understand social rules even though they weren’t directly taught about most of them. As I wrote in my previous post, neurotypicals understand social rules because those rules were socially created by neurotypicals for their kind of minds … it’s not because neurotypical social functioning is objectively correct or better than any other way.

As I read the book, however, I found myself arguing with Temple Grandin — not just because I had so closely observed highly empathic people on the Spectrum, but also because she was holding on very tightly to the old “emotions versus rationality” idea that isn’t supported by current neurological research.

We understand now that emotions are an irreplaceable part of rationality, decision-making, thinking, memory, and especially learning. In truth, we can’t be rational without our emotions, but I understand Dr. Grandin’s struggle to overcome an emotional functioning that was totally unhelpful to her.

If you asked her outright, Temple Grandin would probably agree with the idea that she is mind-blind and unempathic (this hypothesis is championed by British psychopathology researcher Simon Baron-Cohen) — but as an empath, I beg to differ. In fact, I differ strongly.

Temple Grandin: An empath on the Autism Spectrum

In her books Animals in Translation and Animals Make Us Human, Temple Grandin describes her career in animal science. Dr. Grandin became famous for creating humane feedlots, factory farms, and slaughterhouses — and for designing and engineering many transportation and holding systems to get animals safely from one place to another. She has accomplished this by physically putting herself in the mindset of the animals she works with. Dr. Grandin describes kneeling down low and actually walking the paths the animals walk, looking at the machinery and surroundings from their perspective, and figuring out what scares or bothers them.

Dr. Grandin can set aside her human persona and think and feel as a cow, or a sheep, or a pig, or a chicken might — and from her vantage point, she can identify emotional triggers from these animals’ perspectives. With this information, she makes changes to the animals’ environments, and she designs feedlot equipment, stalls, loading platforms, and walkways that feel safe and make sense to the animals. Her designs help the animals remain calm and avoid panic-based injuries.

Her changes and her designs insure that the animals can be loaded and unloaded from medical and transportation equipment without fear or struggle, and she makes their lives (and their deaths) infinitely more tolerable. Dr. Grandin is a heroine; she single-handedly brought humane treatment to the meat-producing industry.

But get this: She did it by being able to empathize deeply with animals — not merely emotionally, but also visually, cognitively, auditorially, environmentally, socially, physically, kinetically, and relationally. Temple Grandin put herself in the place of the animals, gathered detailed information about multiple aspects of their unique, lived experience, communicated what they couldn’t, and made changes to address the troubles she unearthed.

Photo of Temple Grandin

Temple Grandin communing with a friend

This is what skilled empaths do.

Empathy is not merely the ability to understand cognitively what another person might be feeling, and it is not merely the ability to share an emotion with another person. Empathy is a socio-emotional skill that can help you enter completely into the world of another — and to translate what you sense into language and action. Temple Grandin empathizes deeply with animals; she is working as an empath. The fact that she reports having trouble deciphering human emotions does not in any way diminish her empathic skills; in fact, many of my hyperempathic friends find neurotypical humans confounding and exhausting.

I agree. Humans are very problematic both emotionally and empathically. As a young empath growing up, I had to learn how to connect the emotions people were clearly feeling with the lies they told about those emotions, with the repressive techniques they used to quash their emotions, and with the ways that they used other emotions to mask the ones they were truly feeling.

Before I learned how to identify, categorize, and create separations between myself and the wildly incoherent emotional behaviors of neurotypicals, I was on fire most of the time. Neurotypicals often let their emotions careen around like pinballs, and with some people, you can almost feel mismanaged and disowned emotions coming off of them like puffs of steam. Before I learned how to make sense of neurotypical emotional functioning, I reacted badly to the chaos. I was hyperactive. I withdrew. I lashed out with anger. I felt tremendous anxiety, and I used a lot of physical movement — especially with my hands — to manage my nervousness and confusion (I was stimming!).

As a child, I found humans totally exhausting, and I preferred animals. Animals don’t lie! They feel their emotions and share them honestly, and they don’t pretend. I love animals! They make being sensitive and empathic very comfortable and rewarding. Humans, not so much!

So Dr. Grandin might disagree strongly with me, but I see her as a fellow hyperempath. I also see many of my autistic friends as hyperempaths who, due to their troubles with organizing incoming stimuli — and to the reigning hypothesis that brands them as unempathic and mind-blind — have not been given the tools they need to make sense of the sideways and backward emotional functioning that neurotypicals call normal behavior.

Speaking directly with Dr. Simon Baron-Cohen

In early 2011, my friend Edwin Rutsch, who founded the Center for Building a Culture of Empathy, hosted a question-and-answer session with Dr. Simon Baron-Cohen, the British psychopathologist who champions the hypothesis that people on the Autism Spectrum have malfunctioning mirror neurons that cause them to be unempathic and mind blind. Edwin posted these questions for me, and Dr. Baron-Cohen was kind enough to answer.

Karla McLaren: Dr. Baron-Cohen, is it possible that people on the autism spectrum actually have a neurotypical capacity for empathy, but are often overwhelmed and unable to organize incoming emotional and social stimuli ?

Simon Baron-Cohen: Yes, this is possible. We are only just beginning to understand this complex thing called ‘empathy’. In my book I suggest it has 2 components (cognitive and affective) though in the neural circuitry it looks as if at least 10 different brain regions may be involved. People on the autistic spectrum COULD have some of these brain regions working at a neurotypical level — this is something scientists could test. The idea that people on the autistic spectrum may be overwhelmed by emotional stimuli is also perfectly plausible. Thanks for putting forward a hypothesis that I hope will be testable.  Simon.

KM:  Thank you. I had a job supporting college-aged autistic people, and I read everything I could get my hands on — most of which follow your hypothesis about low empathy and incomplete or missing “theory of mind.” From all these books, I thought I knew the kind of people I’d meet… but I didn’t see a lack of empathy. Rather, I saw people who were overwhelmed by incoming stimuli and who had a very hard time organizing and understanding emotional cues. I’ve since worked with many autistic people, and I really think the theory is leading the data-gathering.

I think that if we all agree that autistic people lack empathy, we’ll ascribe labels to their behavior that obscure deeper inquiry. Sadly, the idea helps people treat autistic folks as aliens. The lack of understanding I saw “neurotypicals” routinely show for autistic people made me ask: “Just who is the unempathic person here?”

SB-C: Dear Karla, you make an excellent point that empathy is a two-way street. So-called ‘neurotypicals’ need to make an effort to understand what the world must be like for people on the autistic spectrum, and how to make people with autism spectrum conditions feel valued. Certainly, the idea of portraying or treating people on the autistic spectrum as if they were aliens is abhorrent. I also think your point that people on the autistic spectrum are “overwhelmed by incoming stimuli” is very important, since the implications is that under the right conditions, people with autism would show no empathy difficulties at all, if the incoming stimuli were not overwhelming.

On this view, any empathy difficulties might be secondary to difficulties due to the rate of information processing. I have some sympathy for this view, because I have met many adults with Asperger Syndrome who can cope with one-to-one relationships and are very caring within these, and only find it difficult when they have to process information in fast-changing social groups. Equally, I have met many adults with Asperger Syndrome who can display their excellent empathy when they have the “luxury” of considering all the facts “off-line”, that is, when there is less time pressure creating demands to respond in real time. These ideas also suggest new lines of research that the autism research community could follow up. Best, Simon

In fact, people are looking into these ideas. Neuroscientist Ilan Dinstein found that autistic adults had normally-behaving mirror neurons, and he is focusing further research on what he calls “noisy brain networks.” And cognitive neuroscientist Gregory Hickok has identified eight problems in the mirror neuron theory.

The hypothesis that autistic people are unempathic and mind-blind is just that: a hypothesis. It was an interesting first guess, but it’s not proving to be true — and sadly, it’s actually making the lives of autistic people more difficult and more painful.

As we can so easily see over at AutismandEmpathy.com, autistic people and parents of autistic kids are reporting instances of not just empathy, but overwhelming hyperempathy in this population. The fact that many researchers are unable to measure or identify this empathy is — in my empathic estimation — a function of:

  1. their incomplete understanding of what empathy actually is;
  2. their misplaced confidence in the mirror neuron hypothesis, and;
  3. their neurotypical mind-blindness about how disturbingly scattered and dishonest neurotypical emotional behaviors usually are.

As Brenda Rotham noted in The Data Myth, if you’re working with a flawed or incomplete premise, your data-gathering may lead you in very unprofitable directions. This is a problem in any area of science, but it’s a problem that has serious consequences when human subjects are involved.

As Simon Baron-Cohen wrote, my idea that autistic people may struggle to organize incoming emotional and social stimuli — which would completely skew any experiment that attempted to measure their emotion recognition skills or their empathy — is both plausible and testable.

Until those tests and studies have been completed and reviewed, it is not only wrong and damaging to brand people on the Spectrum as unempathic and mind-blind, it is completely unempathic.

This essay first appeared on the site AutismandEmpathy.com, a wonderful advocacy site created by Rachel Cohen-Rottenberg. If you or anyone you know is on the Spectrum, go now and bookmark AutismandEmpathy.com!

16 Comments

Sue October 11, 2011 at 10:11 pm

Hey, Karla,

Again, so much to take in here that I’m really not sure from my own personal point of view what to make of all of this. The lines between empaths and Aspies have blurred even further in my mind now! :)

Thanks for this, I shall come back and read several times, I think.

Oh, and BTW I scored 24 on the test :)

Sue October 11, 2011 at 10:57 pm

Karla,

Thank you for sharing again.

Your reframing, I believe, will make it alot easier for those discovering their gifts to access and locate the information that they need. It’s great to see you back.

Empathic Sue (score 17)

Karla October 12, 2011 at 2:31 am

Hello Two Sues!

When I took the test the first time, I got 21, but I was actually trying to get into the Spectrum, so I called myself on my cheating! A went back a few days later and got my 15.

Welcome to the Empath Spectrum!

Kat October 28, 2011 at 1:35 am

Oops, the score I received was 31 hmmm all these years, now “above average”????!!!!!

Kat October 28, 2011 at 2:02 am

I have read and re-read your book. The practices that speak to me are tweaked and have become my own. I can finally befriend the many selves and enjoy life.

Thank you from the bottom of my HEART. I’m actually experiencing empowerment instead of wondering what it means. My body is breathing a giant aaaaaHhhhhhhhhh. Release.

These days I burn many contracts, and summon my inner cast of characters when challenged, overwhelmed…..they willingly, and playfully come forward with bright ideas/solutions.

Thankfully
Kat

Karla October 28, 2011 at 3:56 pm

Hello Kat! We’re finding a lot of people with high scores among our empathic peeps. Funny! I saw the correlation in one community, but didn’t realize that it existed in the other one! Fascinating!

I’m glad the work in the book is helpful for you. Isn’t it nice to be able to affect your mood and your body in intentional ways? Whew!

Julian Zanelli March 6, 2012 at 1:42 am

Dear Karla,
I have just been pointed to your post on trauma healing.com about working with folks on the spectrum and the use of Somatic Experiencing. I am a somatic psychotherapist in Australia and I am working with and had a strong interest in, people on the spectrum and I use many techniques/approaches (and attitudes) based on the work of Peter Levine and SE. Although I also draw on other schools of somatic processing as well (UK/European).

I was stunned that you have learned so much in such a small space of time (late 2011, is that right?). Yes, clinically it appears that processing that volume of stimuli strongly effects social processing and gives the impression of no Theory of Mind. However it is clear, as you and Simon BC say, that they DO have a THEORY OF MIND. However they are in overwhelm in many ordinary situations, and are not able to process. (See Stephen Porges’ Polyvagal theory).

In the quiet of a session, when they have someone calm helping them settle their own autonomic nervous system (engaging the parasympathetics) they can, in hindsight, easily work though social situations with clear understanding. They can on occasion work through what is happening right now with me, and they LIKE (and can take in) empathy when they are calm. Often they have a naivete that accompanies their huge empathy – but that will never show up in a research lab – it takes a long time to show up in a comfortable low key office with me. It is highly guarded and often dissociated. They can forget that this part of them exists in fact, until they are reminded, or feel very safe and slow and calm. This part has often been the source of HUGE PAIN….. I could go on, your thought provoking website was a breath of fresh air! Many thanks

Karla March 6, 2012 at 9:41 pm

Julian, thank you for responding. I had hoped that people could respond on the post over at the Somatic Experiencing site, but it has no comment feature!

I just met up with a somatic therapist here in California who is himself autistic, and things are really coming together! I’m so glad to see that you are working somatically with this population, since so much of the overwhelm is sensory and somatic in nature.

Have you found a way to help your patients navigate through sensory assaults (such as loud rooms, bright lights, or too many conversations) that are unavoidable?

This site, Autism and Empathy, is one that you should find very eye-opening, as it is written by autistic youth and adults (and their family members) about the intense empathy within the community. As an empath, I actually find that spending time with groups of autistic people is much more restful and welcoming than neurotypical people usually are. SBC has really got his theory backward in the area of empathy and autism.

Julian March 7, 2012 at 12:41 pm

Hi there Karla,
1. I am interested by what you might be referring to as “things are coming together”. I would love to talk with someone on the spectrum who is a somaticist!
2. No, in answer to your question, although I am trying to observe carefully the sense of “no skin” i.e. no barrier between in and outside. I think that this might not be solely neurological, it may, and I mean just maybe – psychological. But further research and observation is required.
3. I Am loving this website. Do you know, there is not one person I have come across professionally that has not had more of a problem with overwhelming empathy (and therefore disorganising in the moment) rather than no TOM (or ability to put themselves in anthers shoes).
Julian

Karla March 7, 2012 at 6:56 pm

Hi Julian!

The man I referred to is Nick Walker, and he does trainings and consultations about somatics, neurodiversity, autism, and more! http://walkersensei.com/ He’s in Berkeley, California. He and I are in talks about creating an autism-friendly teaching game about the strange social rules neurotypicals pick up through osmosis but aren’t ever actually taught.

I know you’re in Australia, so there are also online courses that Nick developed which many be interesting to you: http://walkersensei.com/courses/

About the “no skin” aspect of autism; it is also a very common situation for empaths, and I teach a boundary-creation tool (which I once misidentified as the aura) coupled with grounding and mindfulness that might be supportive for people on the Spectrum. I am going to gently figure out if the skills I use to help empaths create functional interpersonal boundaries might work for people on the Spectrum.

Wendy August 4, 2012 at 7:09 pm

Hello Karla,

I was alarmed to discover I had a score of 33. What should I do? Should I see my doctor? Should I see a psychiatrist? Is this legit?

Karla August 6, 2012 at 7:13 pm

Hi Wendy, this test is not a diagnostic tool per se, but it can indicate where you are on the Spectrum. In terms of finding out more, let me ask my friends who were diagnosed in adulthood. I’m not sure that a family doc would have the information you need, and I don’t think a psychiatrist is called for (it’s not a mental illness). I’ll get back to you.

Karla August 7, 2012 at 2:04 am

Hi again Wendy. Here are helpful answers from two of my autistic friends who were diagnosed in adulthood.

From Nick: The Asperger community on LiveJournal is a good place to start – she can join the group, make an introductory post about her situation and her questions, and get answers and recommendations from a whole bunch of us. She’ll need to create a LiveJournal profile first, which is easy and free. http://asperger.livejournal.com/profile

From Rina: If she’s in the Bay Area she can join my Meetup group (well, not *mine*–I’m a member): http://www.meetup.com/asperger/ It’s a good group of people that holds a few different meetings each month. A lot of information-sharing typically happens at meetings, and we get a lot of new people who are at that just-finding-out stage.

You’re not alone!
Karla

Cristina January 7, 2013 at 8:10 pm

Hi Karla,

I’m not sure what brought me to your website. I first learned of your chakra work by listening to your CD set 5 years ago, which I really enjoyed. I came across your research on autism here and decided to take the test. I took it twice, first coming out with a score of 32 and then a score of 36. I was surprised I scored so high. As a child and teen I never heard anyone say I had Autism or Asperger’s. Although I was told in my youth that there was something wrong with me. Taking the quiz and seeing my score was unsettling and frustrating to find out that I am on the spectrum.

Karla January 7, 2013 at 10:12 pm

Hello Cristina! First, the self-test is not a real diagnosis. Second, my autistic friends are some of the most wonderful, loving, insightful, and delightful people I know. Third — a large number of people, especially women, are diagnosed in adulthood. And Fourth, there is a lot of support.

I’m going to gather a list — brb.

Karla January 7, 2013 at 10:27 pm

Okay, look at the list in the comment above yours, plus these:

First, what is neurodiversity?

There are some wonderful organizations run by autistic people, and they’d be a great resource for you. The Autistic Self-Advocacy Network is a good place to start. Their motto is “Nothing About Us Without Us.”

And The Thinking Person’s Guide to Autism is a site that covers the issues facing autistic individuals and their families.

In terms of your own health and well-being, watch out for organizations that present autism as a tragedy, or an epidemic, or something that “steals children.” Those organizations tend to support therapies that treat the autistic person as less than human, as unempathic, and as broken, and they’re not okay! Autistic people are not a tragedy nor an epidemic; they’re people.

There’s also this piece by autistic advocate Julia Bascom in Psychology Today. It’s wonderful: Respecting Autism

And this piece by journalist Steve Silberman, who’s writing a book on the autism and neurodiversity movement: Autism Awareness is Not Enough

All in all, it’s actually a pretty wonderful time to find out that you’re autistic, if in fact you are. The autism community is awesome — so much so that I often call it awesometism.

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