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Exclusive Interview: Dr. James McGrath, Autistic author

I recently had the opportunity to chat with Dr. James McGrath, senior lecturer at Leeds Beckett University and author of Naming Adult Autism: Culture, Science, Identity. James was kind enough to grant me an interview about his fabulous book.

Buy Naming Adult Autism here on Amazon.
Find James on Twitter:@DrJamesMcGrath


SARA: Hello, James! Thank you for agreeing to do this interview about your book. For those readers who don’t know you, can you please tell us a little about yourself?

JAMES: I’m a senior lecturer in Literature and the Humanities at Leeds Beckett University. I was diagnosed autistic in my thirties. In some ways it was a shock, as well as a relief – but I’d always known there was something ‘different’ about most other people. They didn’t seem to need time being silent or being alone each day in the way I did, and their particular interests – sport, television and dating – usually seemed quite odd to me.

My first book has recently been published, and it’s called Naming Adult Autism: Culture, Science, Identity. It’s an academic study, but is also openly autobiographical at different intervals. As well as the scholarly side of things, I write poems. On and off, I’ve been getting poems published in journals since I was 19. One of the book’s chapters, called ‘Title’, is a three-line poem. The other four chapters are about 20,000 words each but divided into themed parts.

As well as looking at novels, poetry, films and songs involving autism, the book experiments with literary critical approaches to the science of autism, which I’ll say more about later.

SARA:  It’s easy to see that Naming Adult Autism: Culture, Science, Identity is a truly throughly-researched and work-intensive labor of love. How long did it take to write from envisioning to publishing? 

JAMES: It took me three years and three months from signing the publisher’s contract to delivering the manuscript. But many of these thoughts had been with me since childhood, before I knew the word ‘autism’. It’s not my first publication on the subject, but it is my first book. And Naming Adult Autism is the first time I’ve written ‘publicly’ about autism and my own life.

I love your expression ‘work-intensive labor of love’, by the way! It was certainly very intense. Writing the book became absolutely everything to me. So on good writing days, everything felt great – and on bad days, if I couldn’t properly focus, everything felt terrible.

When I held the first copies of the published book in my hand, I felt good but strange. The greatest highs in the whole experience – in my entire life, even – came in the writing process itself, and in the feeling of just breathing in at the end of a good day with the writing.

A selfie of James, a white man with blue eyes and a beard and mustache. His brown hair is windswept and he wears a blue T-shirt and black jacket. He looks pleased and relieved.
A selfie of James just after sending off his manuscript to the publisher. Victory!

SARA: What was that process like for you and how did you handle any executive dysfunction challenges?

JAMES: Executive functioning – being able to do the things I need to (from major work tasks down to seemingly trivial things like shopping) has always depended on me having a kind of routine. Many autistic people frequently struggle with executive functioning. But if I can settle into a routine, these things become much easier. The problems come for me when routine gets thrown.

The writing took a year to get going, which scared me. The delay was largely because of my struggle with some large, unexpected circumstances. Two days after I signed the book contract, my then-landlord announced I had to leave the attic flat that had been my home within two months, so he could sell it. I was utterly lost, and it’s a painful time to remember. The practicalities of finding a new place to rent, of waiting to find out if I had got the place I wanted, and of packing the chaos of my life into box after box, were catatonically stressful. The most heartbreaking thing was having to say goodbye to a lovely cat called Mousey who lived in the house.

The sheer – I mean sheer like a cliff – personal, practical and emotional upheaval for an autistic adult being forced to leave their home can be unspeakably distressing. And that was very much the situation for me. It took over a year for the disorientation to settle, because the aftermath of the move was almost equally difficult.

A nighttime picture of James' attic haven. The ceiling is slanted and there is a skylight. Stacks of books line one wall, a rack of CDs lines another. There is a bed with bright red bedsheets.
James’ “haven” and home pre-move, an attic flat filled with books and music.

The problem I had was that having moved quite abruptly to a new living space, I just wasn’t settling in to any kind of routine. The light in the room felt wrong, and therefore everything felt wrong. I’d attempt new routines but they just weren’t working. My heart just wasn’t in them.

What I needed was a pattern, a template experience of a day – or even just of, say, a Friday or a Wednesday – which I could enjoy once and then repeat and vary as felt right. But I somehow couldn’t get that to happen. Not having a routine meant having nothing clear to look forward to. But amidst all that chaos, a quietly life-changing realisation occurred for me.

One older friend, a poet and academic who once had been my undergraduate tutor, asked if I would look after his house and cat for a series of weekends while he was away, which I did. With that experience of being in a different space for a clearly set time, routines became more possible – and that was key to how I properly got focused on the book. It was simply a matter of knowing: ‘I’m here for forty-eight hours, and all I’m going to do is write.’ I was thirty miles away from all the usual distractions and in this very atmospheric, sunlit old house with a long garden and a wood cabin at the end, beside the river Skell in North Yorkshire. 

The inside of a rustic cabin, facing the open door to the outside. A computer sits open to James' book open in a Word document.
James’ writing space in the cabin.

In spending weekends in that wood cabin I began to feel calm again. It was what gave me the template for a new routine I could enjoy and which I could – crucially – look forward to. I’m fortunate to have that experience, and I’ve since looked after the house and cat and cabin every summer. Most of the book was written there, as were many poems. It’s also a real delight to have friends come over to the house and cabin in some of the evenings.

I’m glad to say that I’m now much more contented in the space (another attic) where I live, in a shared house with two really good friends. But it did take a long time (and many repositionings of furniture in relation to light and shade) to reach this point.

During university semesters, I tend to get my writing done very, very early in the morning, usually starting at two. I can work that if I go to bed by about eight in the evening. It gives me about five hours of writing time before walking into work, though I can’t usually do the nightwork more than three mornings a week before tiredness catches up, and I start to turn off my alarm in my sleep.

SARA: You yourself are Autistic. How important do you think it is for Autistic people like you and me to be heard and seen, both by allistics and our fellow Autistics?

JAMES: Across psychiatry, society and culture, autistic people have had their critical perspectives and even just their voices ignored for way too long. Even now, although progress is visible, it’s still mostly neurotypicals (or allistics) who exercise almost all the power over whether, when and where autistic people are given a public voice.

Although Naming Adult Autism is frequently an angry book in critiquing the mainstream coverage of autism, the parts within each chapter move increasingly towards more progressive or often more radical texts. There are sequences on work by autistic poets (Les Murray and Joanne Limburg), on novels by Douglas Coupland (who in published interviews identifies as having Asperger Syndrome), as well as on some really valuable novels by authors who, so far as I’m aware, do not identify as autistic (Clare Morrall, Meg Wolitzer).

The most provocative novel dealt with was Margaret Atwood’s Oryx and Crake. I’ve huge respect for Atwood as a writer, so those pages were hard to write. Seeing autism conflated with a pathological opposition to the arts and to fiction itself in a major literary novel was grim – though it did help to galvanize some of the book’s main standpoints.

I wanted to write about some less obvious texts in relation to autism, such as E. M. Forster’s novel Howards End, The Who’s 1969 album Tommy, Ricky Gervais’s The Office, and the Michael Andrews/Gary Jules song ‘Mad World’.

A most important thing, though, was to connect with and reflect on critical writings on autism by #ActuallyAutistic authors, such as Jim Sinclair, Damian Milton, Laurence Arnold, Sonya Freeman Loftis, Dinah Murray, Wen Lawson and Gillian Quinn Loomes.

But despite the rapidly expanding wealth of art and scholarship from autistic people, how often are any of us are given space for expression in the wider media? It does sometimes happen, and I was delighted this spring to be interviewed for BBC Radio 3’s poetry programme The Verb with the poet and academic Kate Fox. Thanks to a genuinely forward-thinking producer in Faith Lawrence, Kate and I were given a space to properly challenge some of the misconceptions around adult autism. But such opportunities are rare.

A screenshot of BBC Radio 3's poetry program "The Verb" episode where James appeared. It reads "Autism: poetry, language, and writing. James' name is circled with an arrow pointing to it.
A screenshot of BBC Radio 3’s poetry program “The Verb” episode “Autism: poetry, language, and writing” where James appeared. Find it here or click the picture. (Credit: BBC Radio 3)

It’s as if the media prefers autistic adults to reinforce existing stereotypes, and that’s something I challenge at length in the book. Autistic adults who question (or even mention) the status quo of, say, Simon Baron-Cohen’s models of autism are actually seldom quoted in the media. Similarly, academic research on autism by actually autistic scholars – despite being peer-reviewed and published – is far too rarely cited in psychiatric publications by non-autistics.

So yes, it’s vital for autistic individuals to be given greater media access: as a human, social right (of course) but also in order to redress the ways in which we have been, and still are, publically misrepresented.

Cultural misrepresentation leads only to further difficulties for autistic people. That’s a main concern of the book. We are expected to be good at science, IT, or nothing. Professionals who influence our lives, and who influence the possibilities of an autism assessment, sometimes fall for these misrepresentations themselves. So I’d love it if some professionals could read the book.

SARA: You note that the “Adult Autism-Spectrum Quotient Test” is skewed (For example, Autistics are not supposed to “get” fiction, according to that test). Can you talk about that a bit?

JAMES: The Adult Autism Spectrum Quotient (AQ) questionnaire is the most widely-disseminated screening tool for adult autism. It consists of 50 statements, with which we’re asked to agree or disagree. The AQ test was launched in 2001 by the University of Cambridge Autism Research Centre (UCARC) after being piloted in the late 1990s.

The test’s principal author was Professor Simon Baron-Cohen: one of the world’s most influential but also most divisive autism researchers.

Anyone with passing interest in adult autism is likely to have seen Baron-Cohen’s questionnaire. It’s widely accessible online and is reproduced in many books, journals, newspapers and magazines. It’s worrying to consider that some people’s knowledge about adult autism probably stems only from reading that questionnaire.

Now, I must emphasise (as Baron-Cohen does) that a high score on this test alone does not warrant actual autism diagnosis.

Crucially though, the test can be used by general practitioners – the gatekeepers of formal autism assessment for many people – in deciding whether or not to refer a patient on to an autism specialist. UCARC’s 2005 report on questionnaire’s validity concluded by advocating its value to general practitioners.

A screenshot of questions 1-14 on the Autism Spectrum Quotient
Screenshot of “The Adult Autism Spectrum Quotient” (AQ) questionnaire (Credit: psychology-tools.com)

But what is less well-known is that in addition to being designed for a practical purpose within widespread medical procedures, the 2001 test was constructed according to a distinct research agenda. It is towards that agenda that certain statements on the questionnaire – and the scoring of their answers – are skewed. Scientifically unsound.

In the book, I go into very, very close detail on several problems with the questionnaire’s design and uses. But here, I’ll try and keep it brief:

  • Professor Baron-Cohen designed the test along with Dr Sally Wheelwright at UCARC. Preliminary tests of the questionnaire’s validity were conducted by the two authors, plus three undergraduates named as co-authors.
  • But as well as being created to ‘measure’ an adult’s autism ‘quotient’ numerically, the other purpose was to test, if not prove, Baron-Cohen’s headline-friendly theory (launched 1997) that scientists and mathematicians show more autistic traits than the general population.
  • The questionnaire is strewn with statements relating to aptitude for STEM subjects: science, technology, engineering, mathematics.
  • Each of the questionnaire’s answers that could suggest interest in numeracy are scored positively (raising the respondent’s autism quotient ‘score’). But each statement indicating engagement with the arts (especially reading fiction) is scored neutrally or negatively.
  • So, the AQ defines numeracy as an autistic trait in its own right. Interest in the arts, conversely, is assumed to be the exclusive province of neurotypicals!! Yet, a possible result is that some mathematicians may have higher AQ scores because they are mathematicians – but not necessarily because they are ‘more’ autistic.
  • Meanwhile, an autistic person who happens to enjoy fiction but not mathematics will come out with a lower autism quotient. And there are potential ramifications of these results.
  • In 2001, Baron-Cohen et al reported on the trials of the test: ‘Scientists (including mathematicians) scored significantly higher than both humanities and social sciences students, confirming an earlier study that autistic conditions are associated with scientific skills. Within the sciences, mathematicians scored the highest.’ (Baron-Cohen et al, 2001, p.5)
A screenshot of some of the maths questions on the Quotient test such as "I am fascinated by numbers" or "I am fascinated by dates."
Some of the math-oriented questions on the Quotient test. (Credit: psychology-tools.com)

Yet that just means that mathematicians score higher in a questionnaire that includes statements relating to numerical thinking. The earlier study apparently ‘confirmed’ here was a 1998 ‘Research in Brief’ publication led by Baron-Cohen and based on Cambridge University students, but that study itself was quite sketchy, as explained in the book.

In a 2012, in a TED talk proclaiming that autism may be linked to ‘minds wired for science’, Baron-Cohen implied that this idea was supported by the 1944 research of Hans Asperger. ‘He wrote’, states Baron-Cohen, that ‘for success in science, a dash of autism is essential’. In fact, Asperger said something significantly different.  In 1977 – reporting on the adult lives of his former child patients – Asperger asserted: ‘it seems that for success in science or art a dash of autism is essential’ (emphasis added).

Asperger (1944) remarked on the flair some autistic children show towards maths and science, but in the same paper, described how others showed distinguished abilities in relating imaginatively to paintings and stories. One of Asperger’s most detailed profiles of an autistic person (ignored entirely by Baron-Cohen) describes a boy named Harro.

I wrote about Harro in the book. I think Asperger’s summary of Harro’s reading skills deserves the attention of anyone who believes that to be autistic is to be somehow indifferent to reading fiction:

‘one could notice clearly that he read for meaning and that the content of the story interested him … his reading comprehension was excellent. . . . he could say what the moral of a story was even though the moral was not explicitly presented’ (original emphasis).

Sheldon Cooper from The Big Band Theory standing with his back to the camera, doing highly complicated math at his whiteboard.
Sheldon from The Big Bang Theory standing at his whiteboard doing math. (Credit: CBS)

As demonstrated from novels by Margaret Atwood to a sitcom such as Big Bang Theory – plus countless broadsheet articles citing Baron-Cohen – the association of autism with STEM has become not just a stereotype, but an expectation placed on many autistic people.  Autistic scholars in the arts, humanities and social sciences may be a minority – it’s too early to say – but we are nonetheless here.

SARA: I absolutely love fiction; Fantasy and SciFi are my favorite genres! What are some of your favorite fiction titles and genres?

JAMES: I can’t imagine life without fiction. I’ve said it before, but for me, reading novels is a way into the world – a way of learning about people (including myself, when I identify with fictional characters). Reading a novel is far easier for me than watching a film. Unlike with films or TV, we can read at our own natural pace, and that for me makes all the difference.

The bright orange cover of "Gobbolino: The Witch's Cat" by Ursula Moray Williams. There is a scruffy black cat drawn on the cover, looking up at a cartoonish spider.
(Credit: Puffin Books)

Fiction has been deeply important to me since the age of hearing stories before I could read. One of the first stories I remember being delighted by was Ursula Moray Williams’ Gobbolino the Witch’s Cat. My sister and I had a tape of it, read by Sheila Hancock.

The novels I wrote about in the book were obviously there because autism itself occupies something like a ‘genre’ in fiction. Even so, in making notes on every page and just immersing myself in the reading, I absolutely fell in love with those novels – especially Clare Morrall’s The Language of Others and Meg Wolitzer’s The Interestings.

I don’t tend to seek novels by genres, so much as themes – and houses are major themes in many of my favourite books. I wish it was recognised more often in society, culture and medicine, this thing of how almost unfathomably hard it can be for an autistic person to have to leave what has become their own home. In the book, there’s a footnote called ‘World is Sudden’ (a paraphrase of Louis MacNeice) where I try and address it, but there’s much more to say.

tom garden book
(Credit: Oxford University Press)

One of the most memorable things I’ve read on this subject is from the children’s writer Philippa Pearce, author of one of my favourite books, Tom’s Midnight Garden (from 1958). Philippa Pearce was not, to my knowledge, autistic, but what she said really speaks to me.

In an interview she did with a publishing magazine, which I read in summer 2000, working in a bookshop, Philippa Pearce described how she felt when the mill house in which she had lived as a child was sold.  She said something to the effect of: ‘I had what could be called a nervous breakdown.’

Many of my favourite writers deal with ideas and experiences of home and houses. As a child, the ‘Green Knowe’ series by Lucy M. Boston (based on her own house) really enchanted me. The Green Knowe stories involve magic and ghosts, but it was really the sense of the house as a place and time that I read them for. 

Also on themes and genres, my PhD thesis (completed some years before my formal autism diagnosis) was called ‘Ideas of Belonging in the Work of John Lennon and Paul McCartney’. Again, I focused closely on themes of ‘home’ – usually as something that has been left or lost. I also researched and wrote a lot from a social history perspective about the two main houses in Liverpool where Lennon and McCartney grew up. An important philosophical book for me at the time was Gaston Bachelard’s The Poetics of Space.

In research and writing at length about autism science in the book, being able to quote from literary authors – mostly poets – was like an intake of oxygen. Percy Bysshe Shelley, Oscar Wilde, Aldous Huxley and most of all William Blake were vital to me there. But the most empowering literary and philosophical influence was Simone de Beauvoir’s chapter ‘The Data of Biology’, at the start of The Second Sex. (Before beginning writing this book, I published a playful poem imagining a conversation between Beauvoir and Baron-Cohen called ‘Ventriloquy Soliloquy’, written on my first Christmas day alone in Leeds).

SARA: Chapter 3 of Naming Adult Autism considers the obstacles created recognizing Autistic girls and women. Can you please talk about some of these obstacles?

JAMES: One reason why I’m so glad you’ve asked me to do this interview Sara is because (like many people, clearly) I really admire – and have learned from – your blogging on this topic.

Another author on this who I highly recommend is Lesley BonnevilleA novel I read recently that deals with autism and gender brilliantly is Ta-Ra, Alice: Odyssey on a Shrinking Raft by A. Robertson.  Ta-Ra Alice was published too late for me to write about, but I’ve posted a 5-star review of it on Amazon.

The bright, vividly red cover of "Odd Girl Out" by Laura James. The title is written in huge white capital letters. There are pictures of uniformly positioned mannequins in the background, with one single mannequin posed differently.
(Credit: Hatchette Book Group)

And, as discussed in Chapter 2 of the book, there’s Joanne Limburg’s The Autistic Alice. More recently, Laura James’s Odd Girl Out: An Autistic Woman in a Neurotypical World. A real highlight of the last few years for me was sharing a platform with Joanne and Laura at the Norfolk and Norwich Literature Festival.

Chapter 3 of Naming Adult Autism is called ‘The New Classic Autism’. Obviously, for something to be both ‘new’ and ‘classic’ is oxymoronic, and I use the term ‘new classic autism’ to underline both the superficiality and, I hope, the transience of a dominant pattern in early 21st-century autism narratives.

Basically, Chapter 3 confronts (and sometimes rages at) how certain wider power structures are shaping both cultural and scientific notions of autism. In most – and certainly the most lucrative – ‘portrayals’ of adult autism, science and culture present us with a white, professional-class, able-bodied male.

In terms of autism and gender, one of the most dubious but still influential models is Baron-Cohen’s much-publicized theory of the ‘extreme male brain’.

There numerous scientific inadequacies to Baron-Cohen’s extreme male brain theory. It’s important to unpack these because, although it’s great that Baron-Cohen and the UCARC are now at last placing more focus on women and autism, the ‘extreme male brain’ idea remains an all-too-familiar cultural and even medical reference point.

UCARC’s equation of autism with ‘maleness’ leans very heavily on the idea that autism is fundamentally characterized by lack of empathy. And according to Baron-Cohen, empathy is a female trait while systemizing is a male trait. That’s the crux of how the theory of autism as the ‘extreme male brain’ begins. The assumption being: autistic people lack empathy, and empathy – according to Baron-Cohen – is a female trait. Hence, the extreme male brain terminology. But for now, ‘extreme male brain’ is not a theory: it’s a metaphor. And metaphors, as discussed elsewhere, tend to be what we use when actually there is no clear or affirmative answer.

Baron-Cohen is a key researcher in the Cambridge-based Fetal Steroid Hormones project, publications on which announce links with prenatal testosterone levels and ‘autistic traits’. But actually, none of the people in the research sample were themselves autistic. The autistic ‘traits’ reported in those articles (reviewed in the book) are therefore tenuous.

It’s also noticeable that UCARC’s publications on autism, fetal hormones and biological sex are – like the earlier studies they cite – oddly less interested in the ‘female’ half of the human brain. The research is both quantitatively and qualitatively imbalanced.

SARA: You make a big push for “[…] promoting deeper, greater dialogue between the humanities and the sciences regarding the meanings of autism.” What are some ways we can foster and encourage discourse, mutual respect, and cooperation between the two regarding Autism and Autistic people?

JAMES: It sounds an ambitious aim, I know. But historically, the division between the study of ‘the sciences’ and ‘the arts’ is actually quite recent. I think the obstacles towards such greater dialogue are not intellectual, but merely practical. But they can certainly be overcome. Things like conference panels that welcome research both from the sciences and from the humanities (and social sciences) on autism are very slowly starting to happen, but they need to be much more frequent – and more accessible to the autistic population. 

And also, simpler still – just reading work on autism from other disciplines. So I think this further dialogue is most definitely achievable – provided we’re all willing to take a few risks in reassessing our own disciplinary vantage points. And what’s the point in being an academic, if it isn’t to keep on questioning our own ideas in search of new knowledge?

James, a white male with brown hair, dressed in colorful yellow, blue, red, and black graduation robes. He is wearing a black graduation hat.
James at graduation.

22: Depression

If at any point this post triggers you in any way, please please do not feel obliged to continue to the end. Feel free to put it aside and come back later. Feel free to put it aside indefinitely. That’s ok! Don’t feel like you have to read it at all if it will not be in your best interest. [Trigger and content warning: this post deals with severe depression and suicidal ideation.] Crisis numbers are listed at the end of the post.

Take care of you. You are important. You matter. You are enough.

I’m beginning to feel safe and myself enough to tackle what I’ve been going through recently. I’ve had to take several steps back from writing to take care of myself, but now I think I need to write about it so I can move on.


I’m just now coming out from behind a wall of clouds. I’m not “out of the woods” quite yet, but I can now see the edge of the forest and know that I can make it there.

About a month ago, my doctor started me on a new medication. I was really excited to be taking it, as it can help with a lot of symptoms I experience from a chronic illness. The first week or so, everything was fine and I was feeling optimistic and ready for the exciting changes. The second week, I noticed I was having strange bouts of moodiness and mood swings. I noted the change in my psychotherapy session and my therapist immediately questioned my new medication as it can affect hormones. We decided to keep an eye on it and see where things went…

By week three, there was an abrupt and terrifying change in my mental state. I began to experience sudden bouts of extreme, deep depression and suicidal ideation (thoughts about death and/or suicide without intention or a plan). It was especially bizarre because I’d experienced clinical depressed before as a teenager; I went through a period of time when I was about 13 or 14 when I never thought I’d feel happy again. But I haven’t been truly, clinically depressed for 15 years and this depression was so, so vastly different.

I experienced what I described to the alarmed nurse over the phone as “these bouts that feel like clouds coming in front of the sun, then pulling away again.” Darkness and utter hopelessness, followed by moments of clearheaded certainty that something was very, very off in my brain. I’d be tackled with soul-crushing, agonizing, deep sadness and hopelessness followed by “normal” brain functioning where I would reel from the shock of being so devastatingly knocked off my feet. Needless to say, the nurse called me back immediately with instructions from my doctor to stop the medication and either go to the ER or call 9-1-1 if I was in any danger. Because I was in direct communication with my therapist, in a safe location, and knew the difference between suicidal ideation and intent, I was able to remain out of the hospital until I could visit my doctor’s office with an emergency walk-in appointment.

There were several things that set this experience apart from the clinical depression I experienced as a child:
  1. This has been a strange in-and-out depression that slams me to the ground at the most unexpected times. As a teen, I experienced a numbing, near-constant depression. As I mentioned before, this has been vastly different. The episodes have been tapering off in frequency and intensity in this last week, but will probably continue for at least another week or so until the medicine is completely out of my system.
  2. The fear that this isn’t medicine-based at all, but me spontaneously going from pretty darn mentally healthy to devastatingly unhealthy in the space of a few weeks. Despite my therapist, the nurse on the phone, my doctor, the physician’s assistant I saw for the emergency follow-up appointment, and my wife all telling me it’s the medicine, it’s been an exercise in extreme trust in both myself and others that this is not me, but the medicine.
  3. The fact that I have little to no control over it. Of course, as a teen I couldn’t “control” my depression either. But with this medicine-induced depression, my therapist noted that it’s not situation-induced or even chemical imbalance-induced. I have to sit this out and wait; my normal coping mechanisms and strategies don’t work and don’t “speed it up” because it’s the medicine in my system causing it, not my brain. My therapist has encouraged me to allow myself to feel: “Stop trying to go around, under, or over it. You’re going to have to go through it.”

It’s been one hell of a ride so far. I’m fortunate to have an excellent therapist and empathetic doctor and an even more incredible wife to help me through a really disturbing few weeks of my life. My friends have been there for me, my Twitter followers and friends have showered positive gifs and silly pictures on me, my parents have video-chatted with me. With their support, it comes down to me being patient and riding this out.

This experience forced me to confront some really scary things from my childhood depression, but ultimately, I’m choosing to see this as a productive (not necessarily “positive”) experience. “HOW?” you ask?

Through this, I was forced to face the fact that one of my greatest fears in life is being depressed again. Of being in a place where I thought about suicide and couldn’t remember ever being happy. Through facing this fear (albeit against my will) I’ve realized that even if I face depression again, it will never be the same as it was as a teen. I am not a child anymore.

I’ve always said that anyone who truly wants to return to childhood isn’t remembering it accurately. I’m not saying I had a bad childhood. But children lack autonomy and control; they lack understanding of many things outside of their control. Their brains are not fully developed. They can’t always communicate what they are feeling and that they need help. They don’t know just how many options for help and treatment are out there.

Additionally, the nature of this coming-and-going depression has forced me to look a phenomenon straight in the face and stare at it unwaveringly. It’s a strange thing when you’re truly depressed: sometimes you literally can’t remember the feeling of happiness. Despite logically knowing it can’t be true, you can’t remember ever being happy. It’s your brain chemistry tricking you. The same is true when you’re not depressed: you truly can’t fully remember what it’s like to be in that bizarre mindset where everything is hopeless and nothing positive. Your brain doesn’t always reflect reality.

That’s part of why I’m writing this post. To remember.

I want to remember because I want to recall that–when I feel like this–it’s my brain that’s changing, not reality. In reality, there are so many people out there to help: therapists, psychologists, psychiatrists, doctors, nurses, specialists, spouses, partners, friends, family, colleagues, internet friends, strangers… There are always options: seeking help, calling a hotline, going to see a doctor, going on medication, in my case: going off a medication, trying a different medicine, seeing a therapist, crowdfunding money to afford to seek services, going to the ER, being hospitalized, talking to friends, reaching out to a loved on, dropping some responsibilities, taking care of only what you have to, focusing on the basics, seeing a psychiatrist, moving back in with family… the list goes on and on. There are limitless possibilities, but my brain can’t see them when I’m blinded by fear.

But now, if I ever experience depression again–be it situational, longterm, clinical, medicine or hormone-induced, or otherwise triggered–I can look back at this post and have hope that those clouds will clear and I will be okay.


USA

Lists of international suicide hotlines:

If you have trouble reaching out, cannot find a number, or have an unsatisfactory call experience, please do not give up. There is help; there are options. Try a different number, go to the closest emergency room, or call 9-1-1 (or your country’s emergency number).

[image description: A dark, cloudy day in Japan. The photo overlooks a small city with many buildings. Off in the distance, rolling mountain ranges cover the horizon. Bright rays of sun are shining through the dark clouds.]

4 Things I Want People to Know About My Autistic Self

Not An Autism Mom reached out to me for a guest article on her blog where she is featuring Autistic voices. Here is “4 Things I Want People to Know About My Autistic Self”!

Click here : https://notanautismmom.com/2018/07/17/seeking-sara/

Featured Image -- 611

or click “view original post” below!

Not an Autism Mom

1) My sensory experience is vastly different than your own.

When I complain that the lights are too bright, noises too loud and overwhelming, tastes bitter and unpleasant, touch too ticklish—I’m not exaggerating. I experience the world in a near-constant barrage of sensations. I am very hyper-sensitive to nearly all sensory input.

I grew up with a lot of internalized embarrassment and shame surrounding my over-sensitivity. At the time I wasn’t diagnosed but I felt different and weird. I was the only kid who covered their ears and cried during fire alarms, always squinted in the sun on the playground, jumped at sudden loud noises, and absolutely refused to eat bitter or spicy foods.

I wish people had understood growing up that I’m not “weird”—just different. My sensory experience is different than yours, but that doesn’t make it wrong or even fully negative. When I am at home and can…

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21: Coming Out (Again): Part 2, The Sequel

Today I posted my first ever official Youtube video! Hooray!

Why come out again, you ask?

Thank you for asking, kind stranger! Well, back in April, I came out as Autistic to most of my family and friends by sharing my  diagnosis story on Facebook. But I really didn’t feel free to be fully public at that point. That ends today with my first YouTube video! Please check it out, give it a like, and subscribe to my channel.

Below the video you can find what I wrote on my personal Facebook about why I feel the need to be out and public about being Autistic!

This is what I posted on my personal Facebook:

Ok, time to rip the bandaid off and never look back!

 🎉🎉

I am Autistic. (Yes, you read that correctly.)

Back in April, I “came out” to a lot of people through my blog, “Seeking Sara: An Autistic’s Journey Toward Self-Discovery”, but I wasn’t quite ready to be completely public about it.

That ends today with this YouTube video 😎https://www.youtube.com/watch?v=gA1gGR4Y_QQ&t=12s.

I had originally shared the blog because I was feeling like I carried such a heavy burden around with me; masking Autistic traits is exhausting (but sadly common) and hiding such a huge part of my identity had begun to take a massive toll on my mental, physical, and emotional health. 😖

Today feels like taking off chains and shaking out my limbs for the first time in ages. I am Autistic, but even I didn’t know for the longest time. For as long as I can remember, I’ve had intense sensory issues, meltdowns and shutdowns, bouts of selective mutism, anxiety, social phobia and processing difficulties… but I had no idea WHY. In late 2017 I was finally diagnosed and suddenly everything made so much sense.

Since diagnosis, I have grown more as a person and learned to love myself more than in the past 5 years combined. I am learning to be authentically, proudly me. I am diagnosed with Autism Spectrum Disorder (not Asperger’s), and I prefer to be referred to be referred to as “Autistic” or an “Autistic person,” NOT “person with autism.” This is just my preference and I hope you will respect that.

I get that some people may be skeptical, probably because what we see about Autistic people in the media is oftentimes a bold-faced, stereotypical lie full of myths. Or because I have done a damn good job of (unintentionally) hiding my Autistic self. But you know, my coming out isn’t really for you.

This is for me.  This is so I can begin to breathe again. This is so I don’t have to constantly regulate my behavior in public. So I don’t have to try to ignore overwhelming sensory stimuli and resist the urge to stim (rock, flap my hands, pace, tic, hum, sing, etc. to help with sensory regulation.) Over the next few months I might start seeming “more Autistic.” This isn’t actually a change; this is just me finally growing comfortable enough to stop masking my traits so hard and just allow myself to be naturally me. I’m done hiding. I no longer feel the need to try so hard to shove myself into a little mold I’ve cobbled together from observing neurotypical peers and characters. I am not them.

I am ready to be unapologetically me—take me or leave me. I’m ready to be publicly me. I’m done tiptoeing around and hoping not to be seen.

Here’s the link to my blog, Seeking Sara https://seekingsara174.wordpress.com/2018/04/12/diagnosis/.
Feel free to subscribe to get email updates when I post. There are about 20 posts up right now. The next one will be on Monday.

Here is the Seeking Sara Facebook group :https://www.facebook.com/SeekingSara174/
Feel free to Like or Follow or both!

Lastly, if you feel so compelled, please feel free to leave a lovely comment or sticker to show your support. Message me, text me, email me, send a carrier pigeon… whatever works for you. I’m hoping being open will help explain why I’m not often at social events and why I rarely take initiative with socializing (apart from being painfully introverted.)

If you read to the very end, props to you and thank you.

 🎉😍❤️

tl;dr I’m Autistic! 🎉 Deal with it. 💪

Phew. A huge sigh of relief. This is a huge step for me, perhaps bigger than the first phase of my coming out back in April.

I’m ready to burst out through the gate and go be me!

20: Empathy (Part 3) The Good!

As promised in 17: Empathy (Part 1) and 18: Empathy (Part 2), I’m now tackling the positive aspects of being an “empath,” or hyper-empathetic person. In Part 1, I wrote about the stereotype that Autistic people don’t experience empathy and how—not only do I empathize—I actually experience hyper-empathy. In Part 2, I focused on media consumption and how careful I have to be with what I watch, listen to, or read due to hyper-empathy. But the focus of both posts was on the negative or tiring aspects of being hyper-empathetic and how it can be a burden. Today I really wanted to address the wonderful side of being so sensitive to others’ emotions.

  • I experience positive emotions strongly too

In Empathy (Part 1), I wrote that “I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive.” I also described “taking on other people’s pain.”  But it’s not just the negative or draining emotions that my hyper-empathy exposes me to!  I get to experience the positive ones too!

When someone around me experiences a strong positive emotion—whether they be on screen or in my life—I am affected. If someone is feeling sheer happiness, I soak up the light from that emotion. I can become giddy and joyful when someone near me is in a similar state. I can cry from happiness and flap my hands with excitement when a character I love is happy. I sometimes have to clamp down on my emotions so that I don’t cry happy tears (or otherwise outwardly show just how happy I am) and embarrass myself when riding the waves of someone else’s happiness. The more deeply connected I am to someone, the more affected I am. It’s wonderful to experience such sincere happiness when others are happy.

  • I connect deeply with characters in media and my soul is moved by music

In Empathy (Part 2), I wrote about the negative ways that media can affect me and that “[d]isconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.” But just as I am positively affected by real-world emotions, I am also affected by positive emotions in media.

I sometimes connect with characters in books, TV, movies, and games so strongly that it feels like I have lived their lives. I hope some people reading experience what I’m talking about and can relate. It can take me days to disconnect myself from a good book and it leaves me with more insight and understanding about other peoples’ lives and experiences. It’s an enormous gift to be able to carry over what I learn in books into reality and further empathize with others.

The emotion in music often moves me to tears and fills me with such a deep peace and tranquility that I can physically feel something in my chest fill with happiness. Sad music can unplug a deep sadness within me so that I can begin addressing it; joyful music can alter my state of mind and leave me feeling energized and full of possibility. Music moves me in ways that I can’t even really describe fully in words.

  • I’m great with kids

I started babysitting around age 12 and loved it straight away. From there I became a part-time preschool gymnastics teacher, then a counselor’s assistant at a camp, an assistant teacher, and finally an English and reading tutor. I love being around kids and young adults, and I think one reason I’m so suited toward childcare and teaching is my ability to empathize.

I told myself when I was young that I would try my best to never forget what it felt like to be a child:  the changes, the anxieties, the frustration, the lack of control… and for the most part, I feel that I’ve stayed true to that promise. I can empathize with kids and speak with them from a place of equality whenever possible. Showing true caring for a child means that I’m often let inside their worlds to see the joys, the anxieties, the excitement, and the stresses…and I cherish that gift!

  • I’m a good partner

My ability to empathize deeply makes me a patient and loving partner. When my wife is happy, my mood is positively affected! When she’s unhappy, I can empathize deeply with how she is feeling and come up with useful ways to help and support her.

  • I am a good listener and ally to my friends and family

As I mentioned in previous posts, my ability to hyper-empathize means that friends and family often confide in me. While this can be tiring, it’s also a gift that I truly cherish. I experience great joy knowing that my loved ones feel they can trust me to listen to things that are going on in their lives.

  • I can empathize with strangers

When I was 7 or 8, I heard about a flood that happened in a different state in the US. There was one church that was severely affected so much so that members could no longer enter the building, much less worship there. I had never been there, never met anyone in the congregation, nor met anyone affected by flooding, but I felt such grief that I was moved to do something. I wrote them a letter and (with my parents’ help and permission), donated my entire allowance savings to their rebuilding efforts.

Around the same age, I decided that I would foster or adopt a child someday. Hearing about kids in the system broke my heart and I was adamant that I would someday provide a loving home to a child in need. (Someday, I hope this will be a reality!)

My hyper-empathy enables me to relate to and feel for strangers—people I have never, and may never meet. It makes me a compassionate, caring, and deeply sincere person, and I cherish this ability.


So there you have it:  some of the many positive ways that being hyper-empathetic can actually be a wonderful thing and something that heavily influences the way I view and interact with the world.

Interviewed by “Learn From Autistics”

Hello all! Thank you so much for your continued support and readership. I truly appreciate all of the emails, messages, comments, and support everyone has been sending my way.

thank you

I’m currently working on two separate blog posts simultaneously on 1) the good side of being hyper-empathetic and 2) the second Sensory Series post. I have also been asked to guest blog on another exciting blogger’s page, so that’s been in the works as well.


lfa-e1528249806559.jpg
In other exciting news, “Learn From Autistics” had previously reached out to me about doing an interview with them as part of their on-going “Autism Interview” series. That came out on their site this morning!

Some of you have probably already seen the interview if you follow my Facebook page or Twitter, but others rely on blog posts to keep up with my writing, so I wanted to alert those people here!

The interview is titled “Autism Interview #67: Sara on Autistic Identity, Late-Diagnosis, and Socialization.” I was really impressed with the questions and learned a lot about myself when answering them.

“Learn From Autistics” is a really interesting site and blog and they have done a ton of fabulous interviews with Autistic people (I’m #67!), so I encourage you to stick around on their site and check out some other awesome contributors.

See you soon with another blog post!

Sara

A photo of Sara in winter gear at the Sapporo Snow Festival holding a heart made out of ice that says, "Sapporo 2017.2.11".

 

[image description: A photo of Sara in winter gear at the Sapporo Snow Festival holding a heart made out of ice that says, “Sapporo 2017.2.11”.]

19: Poison People

There’s a type of person I categorize as a “Poison Person.” They may affect me mentally, emotionally, physically, socially, sensorially, or any combination of these. They will sap my coping and social skills until I am reduced to an anxious, exhausted blob. They may actually be wonderful people; they may even be people I desperately want to like. But they are like poison to me.

A Poison Person:

  • demands eye contact
    • implies dishonesty if little or no eye contact
  • invades personal space, gets in my face
    • may try to force hugs or kiss on the cheek
    • consistently moves closer when I move away
  • wears heavy perfume or scents, is a heavy smoker
  • is impatient
    • demands immediate responses and actions
  • talks loudly or yells
  • jumps topics frequently and rapidly
  • speaks extremely quickly. Is a “hyper-speed” talker all the time
  • jumps in to fill the silence when I’m trying to process something
    • supplies what they think I might want to say or what I might be feeling
    • derails my thought process, sometimes causing me to have to start all over again
  • mocks or makes fun of me/others
    • gossips constantly, makes me wonder what they say about me
  • treats others as inferior
    • is patronizing, condescending, infantilizing, or dismissive
  • lies frequently
    • cannot be trusted; breaks confidence
  • is un-empathetic or uncaring
  • has dry, abrasive humor and finds it funny when I can’t read it

A poison person may have more than one of these traits. Rarely, I meet someone who has ALL of these traits…and I run for cover.

In theory, I avoid a Poison Person at all costs, but unfortunately many PP’s can be fairly practiced at hiding these traits. Other times,  it’s someone who is not easily avoided (example: Boss).

The effect that a Poison Person can have on me is best illustrated through a story:

I went on a shopping trip with two fellow expats while studying in Japan. One was a fairly familiar friend, the other a casual acquaintance. Normally I would avoid going anywhere with people I didn’t know well, but I was desperate to get to this particular store and had no way of getting there otherwise.

The car ride to the store was only twenty minutes, but it felt like an eternity in hell. We took the acquaintance’s car and she had air “fresheners” all over. Those things are like little migraine bombs for me. I could have handled that much, if she hadn’t been a Poison Person in disguise. As she drove, words just kept rocketing out of her mouth like verbal diarrhea.

There was no pause in the stream of words for the entirety of the car ride and I was right next to her in the passenger seat. My friend in the backseat did little to engage in conversation, and I became the sole target for the onslaught. She often spoke more quickly than I could hear (much less process), all but shouted her words, adopted high-pitched voices to imitate people, kept locking eyes with me in the rearview mirror, often grew impatient (and louder) if I didn’t fill the infinitesimally brief silences with an adequate response within her self-allotted timeframe….

Unfortunately, it didn’t stop when we reached the store; she kept it up throughout the entire hour-long shopping trip as well. I had difficulty thinking through what I needed to get while in the store–even with a list in hand. I became anxious and wanted to either sink to the floor and cry, or run out the door and into the night. At one point I excused myself to go find some random item I didn’t even want so that I could have two minutes of calm in which to breathe deeply.

By the time we got back to the car, I was at the end of my rope. During the twenty minutes of overpowering one-sided conversation returning home, I had to focus on breathing and not throwing up. I was nauseous and had a pounding headache. My thoughts were scattered and I struggled to say anything at all. I answered her in one-syllable words, hoping she might get the hint. I didn’t feel comfortable asking her to speak more softly (or not at all) because it was her car, her driving, and her kindness that got me to the store at all and I didn’t want to be rude or ungrateful.

Once I got home, I was completely nonverbal. I couldn’t force myself to speak. Instead, I sat on the couch and rocked. By the time I had calmed down, it was time for bed and I collapsed into bed in absolute exhaustion. My final thought that night was, “God, it must be exhausting to be her….”

18: Empathy (Part 2)

Hyper-Empathy and My Media Choices

I began writing about my experiences as a hyper-empathetic Autistic person in 17: Empathy (Part 1) and quickly realized that I had too much to talk about in just one post.  Today will continue my look at empathy–this time through the lens of my media consumption.

As I mentioned briefly in Part 1, I struggled a lot when watching TV or movies as a child until I realized that I was having extreme issues over-empathizing with characters or people on screen. If I’m being honest with myself I sometimes still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

One clear example of this is the show “America’s Funniest Home Videos.” I know many of my readers aren’t from the US, so I’ll explain. On this show, viewers watch home videos sent in by other viewers and (hypothetically) laugh until they cry. My family used to watch the show pretty regularly. Some of the videos are adorable, others are sweet, and some are funny. But I realized after a while that I was really tense while watching and noticed I was most upset when certain kinds of videos came on. There are a good number of videos sent in of people slipping, falling, crashing, or otherwise hurting themselves on camera. I hate those!

I understand logically that probably no one was actually seriously hurt in these videos. I realize that people probably wouldn’t have sent them in if they had! I get that the person in question may even have found it funny themselves. But it doesn’t really matter. For me, there’s truly never been anything funny about a person in that kind of situation—even if they’re perfectly fine. The “funny” videos where someone dropped a birthday cake or scared their child while wearing a mask aren’t any better for me. I empathize too much and feel sad and guilty about the dropped cake or upset and betrayed by the parent who frightened the kid.

There are certain storylines in other shows and movies that I usually don’t enjoy watching either. One great example is the infuriating “barter” episode. The one where a character runs around for the entire episode trying desperately to reach some goal only to fall continually just short of it. Where a character has a priceless object —let’s say, a vase— that they want to trade for a famous baseball card while at a flea market. Unfortunately the baseball card collector has her fair share of vases at home and refuses…but mentions she would just love that shiny red action figure at the table next door. The main character rushes to the action figure collector who tells them they aren’t interested but really wants the antique music box sold by their competitor… The story goes on until our hero has traded their vase for a candelabra for a chess set for a Pac-man lunch box for a whole host of things… all until they get that shiny red action figure and go to the baseball card vendor, only to find that she just sold it. You know–the really, really frustrating and infuriating episode trope. That’s another example of something that’s meant to be entertaining but makes me incredibly anxious and upset.

I could go on and on with media:  books, news, video games, movies, TV, music, etc. I have to be very careful about what media I consume for many reasons, but empathy is one major one. Watching the news has almost always caused me extreme anxiety or even panic attacks. Certain songs can send me quickly into a spiral of sadness and anxiety. Books can pull me into their pages and make me over-relate with characters who exist only in the ink on a page. Horror and gore are things I cannot stand, even a little. Disconnecting from or not engaging with certain types of media has been essential to my survival as a hyper-empathetic person.

Over time I’ve gotten better at both selecting media and at recognizing when I’m over-empathizing. These are some things that help:

  • I don’t usually watch reality TV (well, that’s not just due to empathy…).
  • I avoid depressing or distressing movies or shows.
  • I mostly avoid going to the cinema (big screen=big impact, plus no pausing).
  • I’m very selective when keeping up with the news.
  • I remind myself during difficult scenes that actors aren’t really in the situations they act in.
  • I mute dramatic music when I notice it affecting me in a scene.
  • I do something else while I watch to ground myself in reality and disconnect more from onscreen emotions.

I’ve found that a healthy mix of avoidance and coping mechanisms means I can enjoy more media. I still tend to watch mostly children’s shows, cartoons and anime, and fantasy/scifi movies and TV though. The rest just don’t usually interest me and these genres pose less of a potential threat to my mental and emotional health.


So there you have it! This is another post that makes me feel vulnerable and I’m still processing why that is. Maybe because I’m tackling a stereotype that is still so widely believed. Maybe because I’m afraid people will see my sensitivity and empathy as weird or signs of weakness. Maybe because I’m afraid people will discredit and invalidate my experiences. I’m not really sure yet, but I also think it’s important for me to be honest and share true insight into the way I experience the world.

The next time I post about empathy, I want to focus more on the positive aspects of being hyper-empathetic!

Click here to read 20: Empathy (Part 3) The Good!

17: Empathy (Part 1)

There’s a misunderstanding still floating around that Autistic people don’t feel empathy. This is inaccurate and misleading. True, some Autistics have difficulty with things like social imagination and being able to guess what someone might be feeling. Some struggle to understand non-verbal cues and expressions and so might not react in a way that’s socially expected. Some Autistics struggle to express what they are feeling; others have difficulty understanding just what it is they are feeling. Some don’t express themselves verbally. Some may express empathy and feelings in ways others misinterpret or don’t recognize. And some struggle with these more than others. But that doesn’t necessarily mean they lack the ability to empathize.

Just because someone is not responding to something in a way you might expect, that doesn’t necessarily mean that they aren’t internalizing it and reacting to it. A reaction may come out later once they have had time to process it. It may come out in behavior later. It may come out subconsciously. Or it may come out in an act that you don’t see as connected or related. It may just stay internalized and bottled up. There are many possibilities, but I don’t believe that lack of empathy is an Autistic trait.

But as always, I can only write from my own perspective about my own experiences and observations. All Autistic people are different just as all neurotypical people are different. I don’t and can’t speak for anyone but myself, but I hope that my words will resonate with people and provide some level of insight.

I’ve been struggling to write this post for over a week now and realized I just have too much to say about empathy so I’ll break the topic up into several posts.



I don’t lack empathy. I feel empathy in a deep, gut-wrenching, fatiguing, and heartbreaking way. Some people might call it being hyper-empathetic, others might call it being an “empath.” All I know is that I feel empathy so strongly that I often have difficulty separating my own feelings from those of someone else. I absorb emotional “energy” to the point that I become absolutely weary from it. I feel other people’s pain so innately that it can be so debilitating I have to try to unplug my feelings and let myself grow cold and unattached to survive. I don’t feel too little; I feel too much.

For as long as I can remember, I’ve felt this level of empathy. My childhood psychologist noticed how much I struggle with the deluge of emotion in the world and was always saying, “Stop taking on other people’s pain!” She’d have to remind me again and again to let it go and move on–that person would have to deal with their own pain and feelings and I had to let them do that.

As a child and teen I struggled a lot when watching TV or movies until I realized that I was having issues over-empathizing with characters or people on screen. If I’m being honest with myself I still struggle hugely with this, but I’ve learned to be much more selective with what I watch.

Hyper-empathy and “taking on” other people’s emotions are things I still struggle with. I’ll dwell on what others are going through and can’t seem to let it go. In some ways, it’s a wonderful thing to be able to do. I’ve always been someone that friends come to when they need a listening ear and I truly cherish that role and the trust people place in me. But on the other hand, sometimes empathy can knock me flat on my back for days.

Hyper-empathy isn’t always a bad thing! But that’s a post for another day….

Click here for 18: Empathy (Part 2) Hyper-empathy and My Media Choices

 

Click here for 19: Empathy (Part 3) The Good!

 

[image description: A green garden with an old statue. The statue is of a woman holding a pot on her shoulder that is spouting water from it. It is cracked and worn by time.]

 

16: Sensory Series (1) Auditory

Many Autistic people struggle with sensory input–whether it be hypo- (under/low) or hyper- (over/high) sensitivity. All of my sensory experiences are on the hyper-sensitive end. This means that the world is a very overwhelming place for me a lot of the time. I wrote about 5: Sensory Overload & Control in a previous post.

Today’s post will start my “Sensory Series” where I talk about how I experience each sense individually and how I cope with such strong sensory input. Part 2 of the series can be found here: 23: Sensory Series (2) “Picky Eater”.



Hearing is the sense that gives me the most trouble to the point that I often wish I had a mute button for the world around me. Sometimes I even wonder what it would be like to have a cochlear implant that I could detach when sound was just too overpowering. The world is such a loud place and it seldom stops talking.

Some days are better than others. Sometimes my brain does a better job at filtering sounds toward the back of my mind, but most days the sound comes at me all at once in a jumble of confusing, overwhelming chaos. Each sound jockeys for position at the front of my mind as each insists I pay close attention to its deafening shouts. It’s an exhausting experience to be constantly inundated with such a loud, insistent world without the ability to filter any of it out.

Even now while I write this post in a relatively quiet room, sound is everywhere. The high-pitched chirping of a bird outside the window is joined by the electric whine of the TV (which is off), the shower running upstairs, a family member walking on the floor above me, a goose in the front yard honking incessantly, the walls and windows settling, the wind swooshing through the trees out back, an electric toothbrush pulsing, a door opening and closing, the hum of the ice maker, the neighbor’s car door slamming…. All loud. All insistent.

I am very easily startled, overwhelmed, or distracted by sounds. I’m likely to jump at a sudden loud noise and it can often be very painful. A lot of sounds are physically painful to me:  fireworks (which I also feel as a punch in the chest), alarms, sirens, anything shrill, etc. Some are less painful but more overwhelming; those make me feel like I’m drowning:  crowds, loud music, revving engines, etc.

These are some of the most extreme sounds for me:  fireworks, fire alarms, sirens of any kind, pitch-bending (sliding between notes), dentist drills, wood saws or drills, squealing bike brakes, shrill voices, whistles, people whistling, motorcycles revving, airplanes overhead, loud voices/shouting, loud and unexpected sounds in general, high-pitched noises, tapping or clicking, people talking behind me, crowds, out of key music, hairdryers, vacuum cleaners…. 

While I doubt that these things are pleasant for most people, they can be absolutely excruciating to me.

It’s important to note that auditory sensory overload isn’t always related to sounds I don’t like. When I’m overstimulated, I can’t handle any sound. Not my favorite song or an otherwise pleasant white noise or even the sound of a loved one’s voice. At that point, any sound is toxic until I recover.

Below are some examples of my intense auditory sensitivities to give you a better idea of my experiences:

LOOPING

Sometimes a noise or sound gets stuck in my head. I call this “looping” and it can be maddening. Think about something like nails on a chalkboard. (Even typing that makes me physically uncomfortable. But that cringing sensation that a lot of people experience is how many sounds feel to me!) Imagine that sound getting trapped in your head and sort of echoing again and again and again–long after the actual sound has passed. This happens to me fairly frequently and it’s extremely painful and distressing. 

ELECTRONICS

I did an experiment with a friend once while studying abroad. After months of being annoyed by the high-pitched whine of the old TV in the corner of the dorm kitchen, I finally grumbled, “It’s so LOUD!!” My friend looked at the sumo match on the TV, back to me, and then back to the cheering crowd on the screen. “Loud? Ok, I’ll turn it down.”

I shook my head. “Not the program. That shrill sound that comes from the TV.” He cocked his head and muted the TV–listening intently. To my surprise, he said he couldn’t hear it. I was completely shocked.

You can’t hear that? Seriously? It’s all I can hear…” We decided to do an experiment. I turned my back on the TV. He kept the volume muted and silently turned the TV on and off and I told him whether it was on or not based on the whining sound. I left the kitchen and started to walk down the hallway, calling back to him “ON! OFF!!… ON!OFF! No, STILL ON! Ha, tricky!” as I passed room after room.

I made it all the way down to the end of the hallway where I could still hear the faint sound of the shrill TV. When I got back into the room my friend was shaking his head.  “Is that why you always turn it off when no one’s watching it? I thought you just really hated sumo or something.”

FIRE ALARMS

One year while teaching in Japan, my desk was located directly beside the fire alarm. I didn’t realize this because it looked different from the ones I’m used to seeing. (In some ways I’m glad I didn’t know because if I had, I may not have been able to relax.) One day, we had an unexpected fire drill and the alarm blared directly at me. It was actual physical agony. I can still remember the physical pain throughout my body and the extreme nausea. I legitimately almost threw up. I was on edge for the rest of the day—jumpy and fidgety until I could go home and sit in a dark, quiet room with both earplugs and headphones.

When I was a kid and there were safety drills at school, I would be a complete wreck waiting for the alarm, during, and for the rest of the day. It would make me anxious and physically ill for the entire day. I remember trying to be “tough” like all the other kids who could walk down the hallways laughing and joking, but I always had to shove my fingers in my ears and grit my teeth as I raced out of the building.



Coping

Ear plugs: I wear earplugs while I sleep and I have done for at least a decade. I can’t fall asleep without them; I can’t even begin to relax and let down my guard without them. I’ve started to bring earplugs everywhere I go and wear them in restaurants especially.

Noise-cancelling headphones: When I first got my headphones, I wore them every chance I got but found that I panicked when I had to take them off for work. I think they actually made me more sensitive to sound and that was a horrifying discovery. Now I only wear them when I really, really need to avoid a sound that earplugs just won’t help with.

Stimming (Blocking or recovering from bad sensory input with good/neutral stimuli): Humming or singing softly to myself is one of the most effective tools to help me deal with auditory overstimulation and sensory overload. This works by blocking out other sounds and giving me some control over what I’m hearing. Unfortunately, it’s something that society has made me feel uncomfortable doing in public, but sometimes I can’t help but do it to survive. I’m getting better at doing it in situations where I need to.

Silence: I bathe in silence whenever possible. Silence is a breath of life.

For the next Sensory Series post on “picky” eating, click here: 23: Sensory Series (2) “Picky Eater”.

 

[image description: An office building that’s absolutely covered in dark green ivy. It even covers the majority of the windows. In places, the building appears to be made out of ivy.]

 

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