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Video: Meltdowns & Shutdowns

Did you know that I have a Seeking Sara YouTube channel?

I make videos rather infrequently but am happy only making a few a year since writing is the medium that works best for me! Please enjoy.

What do I experience in a meltdown? What is a shutdown? What are pillars and how does paying attention to them help lessen my meltdowns/shutdowns?

 

Also, in case you missed it, I was recently published on both Thinking Person’s Guide to Autism (here) and The Mighty! (here)

 

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23: Sensory Series (2) “Picky Eater”

Swiss Cheese Plant: a plant with huge green leaves that have large oblong holes through them.
“Swiss Cheese” Plant (monstera friedrichsthalii)

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me around my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers alike.

Recently I’ve been examining why I struggle with certain foods and have come to the same conclusion as I have with much of my post-diagnosis self-exploration:  I’m actually incredibly strong and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty fast. Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming–it’s texture, smell, color, consistency… What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

TASTE

I really struggle to eat bitter, sour, or spicy foods. The problem is, what you consider overwhelming is likely not what I do. Remember, all of my sensory input is dialed up and extra-sensitive. I’m not just being picky; I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Another factor is that sometimes my sensory input seems to go haywire somehow and, for example, a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

TEXTURE

Texture is a huge factor as well. Texture no-go’s for me include: peaches, coleslaw, celery, Japanese konyaku, warm peanut butter, etc. I can’t really explain why some of these things are difficult for me, but the sensation can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m required to eat something for whatever reason.

TOO MANY TASTES AT ONCE

Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish and literally not being able to eat it without melting down or extreme distress.

IN CONCLUSION

I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat and I should give myself more credit.


BONUS:

STIMMING THROUGH FOOD

While tracking what foods are difficult for me to eat, which I refuse to eat, and which I love to eat, I noticed that I draw on certain foods as a massive comfort; I actually stim by eating these foods, usually in a ritualistic manner. They include foods like applesauce, crackers, pretzels, oatmeal… notice a pattern? When I’m exhausted or overloaded, I can’t deal with any intense or unpleasant colors, smells, textures, or tastes. Eating these familiar, bland foods is a source of comfort and helps me calm down. Now that I have identified that I am stimming through food, I have consciously begun working on stimming in other more healthy ways (allowing myself to rock, hand flapping, touching soft things, listening to a song on loop, etc.) to try to avoid stimming through binge-eating.

Click here Sensory Series Part 1, 16: Sensory Series (1) Auditory.

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 husband 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 husband 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).

Seeking Sara Used Depression

 

 

 

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/

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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…

View original post 1,229 more words

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

Today I posted my first ever official Seeking Sara 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 Seeking Sara 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!

Used Coming out part 2

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 husband is happy, my mood is positively affected! When he’s unhappy, I can empathize deeply with how he is feeling and come up with useful ways to help and support him.

  • 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.

Used Empathy Part 3