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Yenn’s Autism Show: Sara Earhart

I recently had the awesome opportunity to be interviewed by Yenn Purkis–Autistic author, blogger, presenter, and advocate. Their podcast is called The Yenn Purkis Autism Show (Formerly known as Jeanette’s Autism Show at the time of recording.)

In this episode, we chatted about blogging, the Autistic community, identity, and more!

Click the link or picture below to be redirected to the podcast! Both open in a new tab. (WordPress isn’t allowing me to embed the podcast here for whatever reason.)

The interview: https://jeanettepurkis.podbean.com/e/jeanettes-autism-show-sara-earhart/

A screenshot image of the podcast player showing Sara's interview. The title reads

Yenn’s links:

Podcast channel: https://jeanettepurkis.podbean.com
Facebook: https://www.facebook.com/jeanettepurkisbooks/
Blog: https://yennpurkis.home.blog/
Website: www.jeanettepurkis.com
Twitter: @yennpurkis

We hope you’ll enjoy!

[Featured image description: On the lefthand side is a picture of Sara in front of Niagara Falls. Sara has sunglasses on top of her blue hair, noise-cancelling headphones around her neck, and a plushie duck in her hands. On the right is a blue box with the words “Podcast Interview. Talking about Autistic identity and community, blogging, gender, and more! The Yenn Purkis Autism Show: Sara Earhart” A small drawing of Yenn is pictured in black and white. They have their eyes closed and are smiling widely while holding a framed picture of their apartment.]

Anniversary Interview 1: New Friends

Anniversary Interviews

November 2018 marks one year since my “official” clinical diagnosis of Autism Spectrum Disorder. When brainstorming what I wanted to write about, I was finding it difficult to come up with anything meaningful or interesting. For the last 6 months of doing Seeking Sara, I’ve been doing 98% of the talking, and I thought it was time to turn to loved ones in my life for their thoughts and insights on my Autistic experience.

The interviews will be with:

1) New friends

2) A high school friend: Anniversary Interview 2: High School Friend

3) My husband: Anniversary Interview 3: My Husband

4) My parents: Anniversary Interview 4: My Parents

Then, I will share my reflections on the experience. Enjoy!

Note: These are all people who have been actively trying to learn about Autistic people and how to better interact with and support us. Please be understanding and forgiving of anything like using person-first language (“person with autism”), using functioning labels, or anything of that nature.  All of those being interviewed are being gracious enough to agree to put themselves in a vulnerable situation, and I really appreciate that. Thanks!


New Friends: Ivana and Nicole

1) What were some of your initial thoughts when I told you I’m Autistic?

Ivana: I don’t think you told me directly. I think I read it on your blog. To be honest I didn’t think much of it. I know other people with autism and know about it. I know there is a huge range as far as traits go. I was very impressed by how open you are and that you are using your experiences to help out and reach out to other people. I also thought you were a great writer!

Nicole: Initially I was surprised and curious to know more about your diagnosis.  As someone who works with children, I’ve had some experience with children who are on the autism spectrum, but these interactions were typically with youth who are “low functioning” or fall on the more “severe end” of the spectrum. My Mom also has worked for several years as a classroom aide for elementary students with IEPs, very often those with “severe autism” included. You didn’t seem to meet my perception of what autism looked like, hence the surprise and curiosity! I don’t think it would have ever occurred to me that were an autistic person if you hadn’t told me.

2) How has your perception of me changed since I told you? What do you notice about me now?

Ivana: I did notice sometimes when we have been talking you might look away and focus on something else. I assumed that helped you when there might be too much stimulation in the environment. I also noticed how you sat at the end of the table at the [wedding] rehearsal dinner, because I know that’s something I do as well to cope with my anxiety. 😊

Nicole: I don’t think my perception changed all that much, but that is at least partially due to the fact that I didn’t know you for very long before I knew you were autistic. What I notice most may be your behavior in social interactions— your comfort level and engagement with others can vary and if you seem to be taking some alone time, I respect that. Reading your post about small talk and eye contact was really interesting to me and something I keep in mind if we may be socializing together.

3) Is there anything about me that made more sense to you after I told you?

Ivana: I think I got a better understanding why you and I connected so easily & quickly. I have social issues that I struggle with.

Nicole: As I mentioned before, since I didn’t know you very well before I knew you were autistic, I don’t think I had the opportunity to really notice any differences or reflect on behaviors.

4) What kind of positive changes have you seen in me in the last year? How have I grown or changed?

Ivana: I don’t think I’ve known you long enough to really answer this, but I know as we’ve gotten to know each other better you have opened up to me much more. Every time we see each other I feel like I know you more.

Nicole: You’ve become more confident in yourself! You have grown more comfortable in your communication with others and in sharing your personal stories and experiences, both in person and via the blog (of course).

5) What do you think of Seeking Sara? What kinds of things are still unclear to you? What would you like me to write about in the future?

Ivana: I think your blog is wonderful and I know I’ve learned things from reading it. I’m not sure if you’ve already written about this but I’d like to know more about how you started writing. Did you already have a blog before your diagnosis? What really makes you want to share your experiences? Were you hesitant about sharing in anyway?

Nicole: I think Seeking Sara is wonderful and applaud your bravery to share so much about yourself with others! You have really opened my eyes to the variety of experiences and struggles those with autism can have on a daily basis, and I’ve gained a better understanding of what it means to be an autistic adult especially. Your post about sensory issues with foods specifically really made me think about how such a basic task such as eating can be a challenge.

I truly appreciate that your writing makes me think about many everyday experiences that I take for granted, or don’t think about at all. I’d love to hear more advice for how I can be helpful and supportive to those with autism, as well as more about your personal experiences from day to day.


A huge, huge thank you to Ivana and Nicole for being so gracious and agreeing to do this interview. You’re both awesome!!

The next interview will be with one of my high school friends.

Thanks for reading!

[image description: A picture of red tulips with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing My New Friends About My Autistic Self.” The words “New Friends” are written in red while the rest is written in white.]

24: Ritalin, My Life-raft

What started as a series of sleep and nap studies ended in me getting parts of my life back, some of which I hadn’t realized were missing.

In a similar fashion to my ASD diagnosis—where I described the road to diagnosis as “a journey of good luck, strange happenstance, and unexpectedly compassionate therapists“—serendipity, happenstance, and listening to my gut also led to my being diagnosed with ADD (Attention Deficit Disorder).

Confused? I don’t blame you. Here’s what happened:
(Feel free to skip this next section if you just want to read about my Ritalin experience.)


HOW A SLEEP DISORDER DIAGNOSIS LED TO AN ADD DIAGNOSIS

“Sleep disorder, unspecified. Hypersomnia.” I looked down at the sleep study report the doctor had just handed to me. Underneath a big block of medical lingo were those two lines that I squinted at with confusion.

“Hypersomnia?” I asked. “So… like the opposite of ‘insomnia’? You’d said I probably had narcolepsy. Why is the sleep disorder unspecified?”

“Yes, exactly,” she replied. “Based on your nap study, we can see that you clearly have extreme excessive daytime sleepiness and difficulty remaining awake. We suspected narcolepsy, but you didn’t enter REM sleep in your nap trials, despite falling asleep very rapidly in all of them. But regardless, the treatment will be the same as it would for narcolepsy. I’m going to prescribe you a drug called ‘Provigil.’ It’s commonly prescribed for shift workers and narcoleptics. I had a narcoleptic woman start taking it recently and she said it changed her life!”

As I held the first dose, I was anxious, but excited. This medicine had the potential to “fix” me—at least for a while at a time.

I finally worked up the courage to take it, then got busy while waiting the 30-60 minutes it would take to work. In about 30 minutes, I felt an extreme lethargy slowly washing over me. I became even more drowsy than usual, and began to enter a numb shutdown mode.

I felt like I had dived into a deep pool; everything was muffled and cold around me, but I slowly surfaced back up to alertness as the medicine wore off.

The next day, I was determined to try again. “A fluke,” I thought. “I was just too nervous when I took it.” But the same thing happened. It made me feel so strange, having the complete opposite reaction to something.

One text to a family friend (who’s a pharmacist) later, and I had my answer. “Paradoxical reaction/effect” was a real thing! I wasn’t imagining it. It was a rare side effect (2% kind of rare), but it was real and it had happened to others. My doctors told me to stop taking the medicine immediately.

The reaction led me to researching paradoxical reactions, reading about stimulants, and searching on forums for others with similar reactions. I found that some people with ADHD/ADD had had similar reactions. Many of the experiences they described sounded like lines written from my own life. I started to wonder if ADD could be one of the final pieces to understanding my brain. (Note: Anyone can experience a paradoxical effect, not just people with ADD/ADHD.)

My sleep doctor suggested we try Ritalin next. This made me pause. “Should I be talking to my therapist before I start Ritalin?” I wasn’t sure if I should be evaluated by a psychiatrist before starting it, just in case I did have ADHD/ADD.

I decided I should after talking with a fellow Autistic friend diagnosed with ADHD. We talked until 4 AM because things were just finally clicking into place. There were so many “Ah hah!” moments and I began to feel just like I did when I realized I might be Autistic: denial, excitement, dread, grief, anxiety, and finally—utter relief.

So, I brought it up to all 3 of my team: therapist, GP, and sleep doctor. My therapist assessed me and confirmed that I have ADD. My GP agreed to help with dosing for ADD, using the old “killing two birds with one stone” metaphor. My sleep doctor was all for it.

Holding that first dose felt like I was standing on a towering springboard at the edge of the pool. Would I sink to the bottom again? I worked up my courage and took the first dose… and started my new normal.

RITALIN, MY LIFE-RAFT

It turns out that Ritalin works for me. Like, really, really works. Not only does it banish at least 75% of my chronic fatigue while it’s active, it makes me alert and awake, and allows me to function an entire day without crippling sleepiness and an absolute need to nap. I had forgotten what it felt like to be fully awake. For the last decade, it was rare that I could make it through a single day without napping. Now I can do it with relative ease. I’m finding that the day has so many more hours than I remember it having!!

But what happens to my mind is equally as life-changing.

My whole life, I’ve been treading water. I’ve been fighting so many currents, trying to stay afloat. I’ve been fighting to stay afloat, feebly trying to snatch at tasks and getting bowled over by the tide.

A picture of teal waves with lots of foam. Text reads, "Ritalin is my life raft. It keeps me afloat so that I don't struggle to function at a very basic level. When I'm on it, I'm not flailing around aimlessly in the water. I move in a single current with direction and ease."

Ritalin is my life preserver, my life raft. It keeps me afloat so that I don’t have to struggle to function at a very basic level. When I’m on it, I’m not flailing around aimlessly in the water. I move in a single current with direction and ease.

Jumbled thoughts and impulses used to crowd in all around my mind, each demanding to be attended to all at once. My mind would flit from task to task, leaving half-finished projects in my wake. I struggled to begin, switch, and end tasks. Sometimes, I would get so hyper-focused on a single task that hours would pass me by. I labelled myself undisciplined, lacking self control, distracted, impulsive, and lazy.

Since starting Ritalin, I’ve felt my confidence soar, my anxiety levels plummet, and my outlook on life brighten. I’ve been able to look at myself through an even more accurate lens than with just my ASD diagnosis. I’m not lazy; I’ve been working hard just to function. I’m not undisciplined; my mind is moving too fast to focus on one thing for very long. I’m not unusually lacking in self control; I have ADD.

Now begins my quest to adapt to my new normal. For so long now, my life has been built around my excessive sleepiness and exhaustion. It’s been built around my need to hide my frantic, scatter-brained, hyperactive, 90 mph anxiety-inducing mind and my hyper-focused binges. But now that I have the life raft that is Ritalin to help keep me afloat, I can start focusing on things I haven’t dreamt of in a decade.

(…Yes, pun intended.)

 

[image description: A photograph of teal waves with lots of white foam swirled through them.]

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)

 

23: Sensory Series (2) “Picky Eater”

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. (See 25: I have an eating disorder. for more on that.)

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

 

[image description: A “Swiss Cheese” Plant, (monstera friedrichsthalii). The plant has huge green leaves that have holes slashed through them, hence the resemblance to Swiss cheese.]

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).

 

[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.]