The Other Autism

Highly Sensitive Person (HSP) or Autistic?

October 15, 2022 Kristen Hovet Season 1 Episode 8
The Other Autism
Highly Sensitive Person (HSP) or Autistic?
Show Notes Transcript

Dr. Elaine Aron and her husband coined the term highly sensitive person (HSP) in the 1990s. Since then, her books and online content on the subject have become widely read and discussed. I'm not the first to see an overlap between the HSP trait and autism, and I won't be the last! 

Topics discussed also include:

  • An overview of the HSP checklist
  • Getting into some details about Dr. Aron's now-deleted FAQ website content on HSP and autism
  • Specific ways that Dr. Aron's work can be helpful to autistic people
  • The HSP trait and how much it aligns with the so-called "female autism phenotype"

If you'd like to know more about topics discussed in this episode, check out:

The Highly Sensitive Person: How to Thrive When the World Overwhelms You by Elaine N. Aron

"Are You Highly Sensitive" —a checklist by Elaine Aron, 1996

"My Hypersensitivity Is Real: Why Highly Sensitive People Have ADHD" by Zoë Kessler

"Journey to Diagnosis for Women With Autism" by Dori Zener

"Sensory Sensitivity May Share Genetic Roots With Autism" by Nicholette Zeliadt

"An Update on Psychopharmacological Treatment of Autism" by Aishworiya et al.

"Biomedical Interventions - Medications" an ASD fact sheet, from Synapse.

Episode intro and outro music: "Sweet Dreams - Middle-East Remix" by Maarten Schellekens (no changes or modifications were made)

Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

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Before jumping into this episode, I want to say thank you to the listeners of this podcast. We are listened to in 24 countries now and United States comes out on top of like 50% of the downloads, followed by Canada with roughly 20% of the downloads. But we have listeners in UK, Australia, France, Sweden, New Zealand, Austria, Ireland, Brazil, Denmark, Spain, Netherlands, Lebanon, Switzerland, Belgium, Albania, Germany, Nigeria, India, Bulgaria, Norway, Poland, and Ukraine. That's amazing. I am so excited. And I am so excited that while I was away, there was another couple 100 downloads. And I am just thrilled that this is getting played way more than I thought it was going to be this early in the game. I just want to say thank you. Thank you. Thank you. And please keep sending your questions in. Most of the episodes have been created as a result of questions I get through emails. If you have a question concern, anything, I want to hear it all. I'm just really curious about what you want to hear. I'm working on my first interview episode for this podcast. Of course, those take longer to arrange and work with people's schedules and everything. But I hope to have something soon. And again, just thank you. And please continue sharing the podcast with loved ones who you think might benefit from this content. Okay, as the kids say, let's get into it. 

Today we're talking about the highly sensitive person, or HSP trait. So before I go any further, it's the morning of Saturday, October 15. I am tired. And you might hear that in my voice. I'm working on an assignment for school. That's probably the biggest assignment of the semester. I've had a really busy week. It's been a great week, very eventful. It was just super busy. But I really wanted to get this episode out. I know I'm behind in my schedule because of traveling and school, but I really, really wanted to get this out before finishing my assignment, which I feel like I'm just going to be spending the rest of the weekend on anyway. So yes, so an announcement I'm now a proud member, board member of AutismBC and so, so, so excited to be working with them. It's an amazing organization. 

Okay, without further ado, we're talking about the HSP trait which many of you have likely heard about. I want to start by saying this is what I call an informed opinion episode based on my reading of Dr. Elaine Aron's books, and website, and the works of many who identify with the HSP trait, and/or are students of Dr. Aron, and also based on my experiences in therapy for a short time with a therapist who specializes in working with people with the HSP trait. And it should be noted that this therapy happened before I was diagnosed and before I knew much about autism at all. In fact, I would say I was totally ignorant when it came to autism. I don't mind saying that I was totally ignorant. 

I've also written a lot on the female autism phenotype, which in my opinion, is the same exact thing as HSP, or at least the content on HSP describes a huge portion of what it means to be an autistic person expressing the female autism phenotype. I usually think about the female autism phenotype as one presentation of level one autism. As much as I love to start this episode with a tangent, I'll save details about the female autism phenotype for another episode. It is however, very important to mention that you don't need to be female, to see yourself in the female autism phenotype. This has been made very, very clear to me, from people who identify as male, born male or identify as male, that I've spoken with in person. And those who've reached out through email or social media over the past few years. Many of them feel uncomfortable talking about this. And so they've kind of messaged me in private, saying, I know this is like the female autism phenotype, but like, I'm a guy, and I'm totally like, right there with all of it. So I get you. Yes, this all means it might need a name change. But for now, that's what the phenomena or cluster of traits is called. As a person who works in the healthcare and research space, it's quite important to maintain at least some consistency with terminology so that everyone knows what you're talking about. 

So anyway, Dr. Elaine Aron, she in my opinion, has written some of the best and most accessible content on the female autism phenotype without knowing it. To truly and accurately represent the female autism phenotype, however, her work would need to be rewritten and updated quite a bit. This episode will include some of my own experience, which is part of my autism diagnosis story. If you want to hear more about that, please check out Episode Five called Adult autism and my diagnosis story. 

To start with a bit of background - Dr. Elaine Aron is an American clinical research psychologist, university professor, psychotherapist and published novelist. Dr. Aron and her husband, Arthur Aron, also a psychologist and professor, coined the term highly sensitive person in the 1990s. Now 77 years old, Dr. Elaine Aron is a self proclaimed HSP, who has written prolifically on the HSP trait, along with the strengths and challenges that come with it. She has done a lot of work in addition to writing on this topic, but she's most well known for her work on the HSP trait. 

I discovered Dr. Aron's work around or slightly after 2010 I think I remember like the Vancouver Olympics happening. So it was somewhere around that time, and immediately felt like I'd found a way to describe myself and my challenges, and also a way to show that I was indeed different from others that others did not experience the same challenges that I did. Before that I really didn't totally understand exactly how different I was, perhaps because my closest friends, the ones I talked about the hardest life challenges with, the ones that knew me the most were all like me, all highly sensitive, all neurodivergent in some way, though, not necessarily autistic. 

Side note, individuals with ADHD, attention deficit hyperactivity disorder, tend to be highly sensitive and are also considered neurodivergent. There are a lot of people in my life who are diagnosed with ADHD or have clear ADHD traits that they themselves have recognized. We attract each other like moths to flame and that's true of neurodivergent folks in general, we just attract each other. 

Anyway, so a friend introduced me to Dr. Aron's HSP checklist, which is online, I first found it online, it's also in her books, around the year 2010. And in true autistic fashion, I read her entire website and purchased her books immediately, including the highly sensitive person workbook, which I wrote in and yeah, journaled about profusely. And I talked about and thought about nothing else for literal months, it was HSP on the brain. I'll include a link to the HSP checklist in the show notes, but just so you have a sense of it, here are some of the checklist items. I seem to be aware of subtleties in my environment. Other people's moods affect me. I am easily overwhelmed by things like bright lights, strong smells, coarse fabrics, or sirens close by. I am made uncomfortable by loud noises. I am deeply moved by the arts or music. I get rattled when I have a lot to do in a short amount of time. When people are uncomfortable in a physical environment, I tend to know what needs to be done to make it more comfortable, like changing the lighting or the seating. I am annoyed when people try to get me to do too many things at once I become unpleasantly aroused when a lot is going on around me. Changes in my life shake me up. I notice and enjoy delicate or fine sense, tastes, sounds, works of art. When I was a child, my parents or teachers seemed to see me as sensitive or shy. I try hard to avoid making mistakes, or forgetting things. 

And side note from me, I'll say that avoiding making mistakes is an indicator of perfectionism. A very common trait in those expressing the female autism phenotype or level one Autistics in general. 

So there are 27 items in total on the checklist as it's currently on her website. I score 26 out of 27. In other words, very, very clearly highly sensitive. I remember after taking the test, I shared it with a bunch of friends and family members, I may have sent like a mass email, which was common for me then, and I was surprised to learn that a large handful of them, who I now know to be neurotypicals are non autistic people, scored very low, well below 14 out of 27, which Dr. Aron says is the cutoff. If you're below 14, it's unlikely that you're HSP. One of my friends scored two and I was like how? Oh, I was just so like, what??? How do you... baffled!! I'm like, Are you sure? Did you read all of them very carefully?! I was just so... I could not believe it. 

Anyway, before this, it was my assumption that everyone dealt with these issues, and I assumed I was just weak and not being able to deal with them or properly hide my responses to the world. I thought that it impacted me more somehow because of some personal failing. In addition to this widely known checklist, Dr. Aron created an acronym intended for therapists and others in the healthcare field to help them better understand HSPs. This acronym is D O E S. I say does but maybe it's dos as in several female deer. I don't know. I kind of like dos though, kind of fits somehow. Anyway, I've seen Dr. Aron on a video just say D O E S. So let's go with that. D O E S. D is for depth of processing, like cognitive processing, every kind of processing, emotional, all the things. O is for overstimulation. Overstimulated by sensory stimuli, our own thoughts and feelings, etc, etc. E is for emotional reactivity. S is for sensing the subtle. 

I really do think she's written the primer on level one autism without knowing it, especially as it relates to the female autism phenotype. And I want to say I could be wrong here, I could be wrong in just associating it with level one autism. I'm just saying it from my perspective. And of course, it's a spectrum. So not everyone is going to identify with this at all. 

I was so obsessed with Dr. Aron's book that my first copy is no longer with us. I highlighted it, wrote in the margins, which is not usually my behavior with books, I shared it around and eventually destroyed it through wear and tear. I had to buy a new one which is sitting in front of me, as I'm talking to you. Two years after buying this second copy, I was diagnosed as autistic. Now when I made the connection between the HSP trait and autism, I, of course, had to email Dr. Aron a very long, detailed email, I received a response from her assistant thanking me for this long and detailed email. But I never actually heard from Dr. Aron herself. I feel this is a shame. Her work could be rewritten, and rebranded and shared with newly diagnosed autistic adults. If it was rebranded as being you know about autistic folks, then people would be able to find it easier, faster, etcetera. I think it would help them so much. 

Dr. Aron, if you or someone you know is listening, which I highly doubt, but you never know, please consider coming on the podcast for an interview. I have so many questions. I know I'm not the first one to make the connection between the HSP trait and autism. I know a lot of people did that before me. The question was actually so common, that Dr. Aron had an entire FAQ page devoted to it. She still has the question posted on her website, but has unfortunately removed her entire response. It now says something like I'm not qualified to answer this, and so on. Luckily, I still have some notes from when I responded to points in that FAQ on HSP and autism, where I copied out entire paragraphs from that FAQ. Clearly from how she responded in that original response, she was thinking about autism as it is traditionally portrayed, and did not show an awareness of Autistics who mask or present in less obvious ways. In other words, her knowledge of autism was like most people's knowledge of autism - very old, very stereotypical, like, boy with this diagnosis, you know, unable to interact with the world around them. And she didn't even seem to have knowledge of like some of the slightly more progressive displays of, you know, autistic characters in mainstream media, or even knowledge of scientists or artists who are openly autistic. Because if she had, I don't feel like she would say the things that she did, which I found, like, especially now looking back, I mean, reading those words are it's... It's hard to read. Let me just go on and you can see what I mean. 

Her original FAQ focused on to autism traits that she says are not seen in those with HSP, apparently. Those are highly restricted interests, and hyper or hypo reactivity, to sensory input or unusual interests and sensory aspects of the environment. She does not show an awareness that many autistic people, especially those expressing the female autism phenotype, tend not to have as highly restricted or fixated interests. We tend to have broader interests that can come and go and can include what most think of as regular or mainstream interests, such as makeup and beauty, fine art, fashion, music, or even celebrities and sports teams or watching sports. In one section, Aron writes, quote, HSPs have intense imaginations and varied interests rather than narrow preoccupations, end quote. A distinction that frankly, betrays an overused, outdated and cliched view of autism. I mean, in other words, she's saying that autistic people are not imaginative and only have narrow, obsessive preoccupations. They don't get to have interests or imaginations in this portrayal. 

Don't worry Dr. Aron, many of us late diagnosed autistic people. had the same cliched and even hurtful perspectives. So, no judgment. I get it, I just wish you would educate yourself on the latest in autism research and learn from the autistic people who have reached out to you over the years pleading with you to hear them out. Instead, from what I have seen, you continue to evade the question and produce more content on the HSP trait. If anything, you've doubled down on this. You are super, super amazing. Dr. Aron, you have created such amazing and helpful content, and the overlap between HSP and autism communities I feel would be a good one, it would benefit so many. 

The one issue that I see happening, and it even happened with me, I would say, when I learned about the HSP trait, I sort of stopped my exploration of like, what made me different? What's making me different? Why am I having issues? Why am I having problems even when I've dealt with a lot of things in therapy? What is it about me that's making me feel different in the world, feel alien, feel different than others, and have challenges that I don't see others having? When I found HSP, that was like it for me, I stopped looking. The HSP trait content is so thorough, and so helpful and there's such a community, a thriving community online of HSPs, that I really felt like this is it, I found my answer. Of course, I didn't fully find my answer. But at the time, that's what I thought. I know there are parents even that have written to Dr. Aron saying, you know, I have my child here. I've identified them as a highly sensitive person, a highly sensitive child. But some parents I know, you know, parents I hang out with have suggested that my child might be autistic. And I'm wondering what you think, Dr. Aron. And I don't think the responses these folks have received have adequately helped these people. And I don't know, I just I think it can be a hurdle to diagnosis. I don't know. I'm just putting that out there. 

So we ended on Dr. Aron evading the question to the point where she's now removed her FAQ content on autism and HSP. When people write her in and say is it HSP or autism, and we also left on the quote of Dr. Aron writing that HSPs have intense imaginations and autistic people don't, they only have these narrow preoccupations, blah, blah, blah. So Rudy Simone, the autistic author of Aspergirls, ASPERGIRLS writes, quote, It is a gross misconception that people with Asperger's have no imagination. A great number of writers, directors, artists, more inventive engineers are on the spectrum. Psychologists who've observed autistic kids have labeled them as unimaginative, simply because they were not playing as society expects to see children play and have subsequently misunderstood what they've observed, end quote. I think that quote speaks for itself. Many of us late diagnosed autistic folks, we had such powerful strong imaginations and for me, like that strong imagination took me through hard times in my life, helped me through, like I still have fond fond memories, I can still recall distinctly, I could paint pictures for you of things going on in my imagination, and my elaborate imaginary worlds that I would create, and I'm not alone. I have read many accounts from autistic people saying similar things like it blows my mind that that concept is still out there that we somehow lack imagination. 

Regarding Dr. Aron's thing about hyper or hypo reactivity to sensory stimuli and the interpretation of social cues, Aron writes, quote, so those on the autistic spectrum have hyper reactivity, but also hypo reactivity at other times or in other situations. This is due to problems in properly processing information, social and otherwise, they fail to sort it out. So it's all there all the time or totally shut out. In contrast, HSPs and HSCs, which is her term for highly sensitive children, by the way, process information very carefully. We can become overstimulated if there's too much for too long. but we do not become fixated in an extreme way. Above all, we can read social cues, unless we're over aroused in the moment by being overstimulated, those with an ASD are always processing the wrong things, and always experiencing chaos unless they are able to shut themselves off from the world entirely, end quote. Always processing the wrong things? Excuse me, What? There's a lot wrong with that section that I just read. 

Ignoring her poor word choices, I'll point out that those who express the female autism phenotype tend to process social information quite accurately, or at least they become quite adept at navigating social situations. So once again, Aron's describing an outdated conception of autism and failing to address the autism spectrum in all its varied presentations, of course, never possible to address the whole spectrum. But I think you know what I'm saying. Ironically, because as I said, at the top of the show, with most of her work on HSP trait, she's explaining a piece of the spectrum with so much accuracy it hurts, because it's mislabeled in my mind. It's mislabeled. 

Tony Atwood, one of the world's foremost autism experts and thinkers explains, quote, there's a third group that's not in the diagnostic criteria. In other words, not represented in the diagnostic criteria yet, which is how the autistic girls cope. What she does is observe, analyze, and imitate, to fake it till you make it. She has a mask a facade that makes her highly successful in what she does socially. End quote. This masking, this camouflaging is not done to dupe or deceive, but it is done as a way to fit in. And since the girl begins this behavior at such a young age long before she's aware of autism, or the distinction between neurodivergent and neurotypical, she may assume that this is what all children must do, to be part of the social world. This is what it must mean to belong. All this effort, all this processing, all this processing, through the brain of social everything must be what everyone has to do! She may eventually learn that she is different somehow. But this will make her try even harder to get it right. So might begin a lifelong trend of pretending to be normal, without knowing she's pretending, and of suppressing her true self, for fear that others will judge her as not one of them. 

Dr. Aron's discussion of her grand nephews, whom she mislabeled as HSP, but later turned out to actually be autistic, is even more telling. Again, this section on her grandnephews was in the original FAQ section on HSP and autism that she removed. Her FAQ once stated, quote, no one who loves a child or their parents would want to think about autism. Even when the child in question will eat only exactly three kinds of food, or is happy for 20 minutes merely watching a bicycle wheel spinning, end quote. Ouch, Dr. Aron. Aron's conception of autism, at least as she's presented it here and elsewhere, does not reach beyond outdated, incomplete and hurtful, stereotypical views of autism. Very few people diagnosed with level one autism could relate to any of Aron's portrayals of autism or autistic people. And I'd say that extends beyond level one autism. I talk about level one autism because that's my perspective. And I want to make sure that I'm not speaking for all autistic people. I want to make that very clear. 

Many level one folks have behaviors and tendencies that are so close to what people call "normal" that they are often misdiagnosed, incompletely diagnosed, or left undiagnosed for much of their lives. This is a particularly common experience for autistic women and those expressing the female autism phenotype. Again, they do not have to be female. 

All told, Dr. Aron neglects to fully consider that the HSP trait she and her husband coined may indeed describe elements of autism, especially as I've mentioned, level one autism, formerly known as highly functioning autism, or Asperger's Syndrome. I can understand or I could understand Aron's mistakes at first, but I don't understand her repeated failure to respond adequately to those who have contacted her about all of this. There's an army of us now, clearly, she has read some of what has been written about this, as she's removed her FAQ section likely due to being called out for her misrepresentation of autism and autistic people. 

Since writing her book, The highly sensitive person: how to thrive when the world overwhelms you, which is probably her most widely read book, she has been interviewed several times by interested folks around the world. In one written q&a on the psych wire website, she's asked, quote, do HSPs struggle more with emotional regulation than non HSPs end quote. She then refers to a page on the subject on her website, which talks about overstimulation experienced by HSPs and their intense depth of feeling, she says, quote, we feel so intensely, it is part of why we process everything very deeply. We are more motivated to think about things by our stronger feelings of curiosity, fear, joy, anger, or whatever. But this intensity can be overwhelming, especially when we have negative feelings. That's why we need to learn emotional regulation skills, end quote. Later down the page, she goes on to say, quote, HSPs are more aware of and have more negative emotions, depression, anxiety, feeling very stressed than other people, end quote. 

So let me just make that very clear what she's saying. First of all, she talks about negative emotions and equates them with depression, anxiety, I would not equate that like, negative emotions are separate from mental health conditions. And as we know, from like tons of research, autistic people often have some co occurring mental health challenges, including anxiety is a huge one, depression is a huge one, and new research is coming out showing a lot of trauma, a lot of PTSD, that's not the same as negative emotions. But I know what she's saying, as in our negative emotions, and our lack of emotional regulation can feed into those mental health conditions or lead to them or exacerbate them somehow. And I want to be really clear what she's saying here, she's basically saying HSPs struggle with negative emotions and mental health conditions, more than non HSPs. The same can be said of, you know, autistic people compared to non autistic people. This is very, very, very, very well known in other places, including on her site. And in her books, she talks about how HSPs feel positive emotions more strongly, too. But this section here is specifically about the negative ones. So that's what I'm going to talk about here, she says that we have more trouble than non HSPs in accepting our feelings, especially the negative ones, not being ashamed of these negative feelings, believing we can cope with them, trusting that bad feelings will not last long. And assuming there's hope in the moment during the bad feelings. In other words, we're not good at doing those things. 

So we get really, really consumed by the negative emotions and catastrophize I guess is very common. And so that can lead to a lot of emotional acting out. meltdowns, shutdowns, anyone? Yes. Dr. Aron, you've described the problems that so many of us autistic folks experience and the number one area that I personally have had to struggle a lot with. Coasting on positive emotions feels like bliss. Just as amazing, certain sensory stimuli feels like bliss, like absolute bliss. But I get bogged down and tied up in negative emotions when they happen. It's hard to pull myself out, to see a future where that emotion is not happening. I've learned ways to cope with that. I've learned mindfulness, I've learned meditation, I've learned distraction techniques to help myself out of those states. But boy, that is a huge, huge area where I spent a good portion of my life working through. Again, it's very, very common in the autistic community. 

The good part in all of this is that Dr. Aron has some amazing tips on emotional regulation, which involves diving into all the areas that might be impacting loss of emotional regulation, such as stress, lack of sleep, overstimulation, self esteem issues from growing up feeling different and so on. Also, in that psych wire q&a, Dr. Aron was asked, quote, do highly sensitive people often present with somatic symptoms, end quote. And the word somatic involves body or bodily symptoms often related to psychological states. Dr. Aron responds that HSPs experience way more stress than non HSPs. And so naturally they have more somatic symptoms. She says that somatic symptoms are very often linked with trauma, which HSPs also have a lot of, like they're very vulnerable to it. We know from past episodes on this podcast, that autistic people are much more likely to be in a near constant state of fight or flight, and they are more vulnerable to interpersonal trauma than non autistic people for a wide variety of reasons. So most of us autistic people have some kind of history with trauma related conditions, post traumatic stress disorder, or similar. 

So again, it feels like we're describing the same thing, Dr. Aron. In a response to this somatic symptom question, Dr. Aron also goes into the more reactive immune systems that HSPs have, more side effects to medications, and the fact that we're more focused on details of our own bodily symptoms, so that a kind of fear or hyper reactivity to somatic symptoms can develop, leading to a kind of feedback loop. Once again, all of these traits have been associated with the autistic population. So much has been written about immune dysregulation, dysfunction and auto immunity and autistic people. I've even seen papers on excess immune cells in the brains of autistic people. There's also been some research on medications and side effects in autistic individuals indicating that we are more prone to side effects, including severe side effects and adverse drug reactions in general. Alternatively, some autistic people experience an unexpected lack of response to only certain medications and an over response to others. In some, our responses to medications are very different generally speaking, than non Autistics. So again, HSP, autism, sounding like one and the same thing. 

Before I end this episode, I want to also say that Dr. Aron focuses a lot on the strengths of HSPs, and their unique brains and nervous systems. So it can be very uplifting to read her content with the understanding that she's likely writing about Autistics. For example, on page 10 of her book, sitting right here with me, the highly sensitive person: how to thrive when the world overwhelms you, she says that the HSP trait really does make you special. We're better at spotting details, such as errors, we're able to concentrate and focus deeply. Yep, Dr. Aron, that's called hyper focus. And we tend to have that in spades, especially when we're focused on a topic or activity that we adore. We're able to process material very deeply, and so on. She has a lot of great things to say about our strengths. 

She does oddly say that at one point on page 11, we're better able to physically hold still. But I think that only applies to a certain portion of the autistic population. For me, I'm very good at holding still physically, and people have often commented how calm or chill I seem. But that's definitely a forced coping behavior that I started doing at a really young age and it's just stuck with me, it's really hard not to do it, I can appear super still and super calm when storms are raging inside. I've observed and heard about the same in other late diagnosed autistics. If you're good and still, you attract less attention, and you're less likely to have others call you weird or other choice words. When I'm anxious and unable to keep still, I constantly shift from one leg to another, which is maybe the only behavior that might give away my anxiety. And my hands are always busy, even when the rest of me is still. I'm always fiddling with something like jewelry, or pens or whatever else is near me. At home in private or when I'm around people I'm super close to and super trust, I'm sometimes anything but still. I work out regularly, I have to almost every day do something. I dance around, I jump around, I spin around. But I have not gotten to a place where I'm comfortable doing these things around most others. For the most part, there are a select few that have ever seen the full active body self. So that's a very weird place to end. But this episode needs to end. 

Thank you so much for being here. 

Until next time, bye.