26: Sick While Autistic

Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.

[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]

So let’s unpack some of it together, shall we?

    • First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
    • Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
    • Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
    • When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
    • Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
    • Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
    • We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
    • Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
    Phew, that’s a lot going on, right??

    So what can we as a sick Autistic or a caregiver of a sick Autistic person do?

    1) Validate and praise

    Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:

    -If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.

    -If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.

    2) Consider temperature, texture, and taste

    When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:

    Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.

    Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.

    Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.

    3) Make a surrogate routine

    Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.

    If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.

    4) Chart a sick calendar

    For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.

    One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.

    Knowing how long you have to endure something is the biggest step toward tolerating it.

    5) Make being sick less awful

    Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.

    Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.

    Take care of you because you are so so important.

    [Featured image description: A green plant with thin, long leaves with white and pink spots that look like chicken pox. Text reads “Being Sick as An Autistic Person”]

25: I have an eating disorder.

Trigger and content warning: eating, food, weight, eating disorder, bingeing, restricting, treatment, recovery.

I have an eating disorder.

It’s taken me a full year to reach a place where I can say that sentence out loud, but now that I have, I feel a tiny piece of its hold on me slowly peeling away. I was diagnosed well over a year ago, but have only started the nitty-gritty of treatment very recently.

So why am I writing about it on my blog?

Well, for one thing, my blog is a place that I can go to write what I’m feeling and it helps me to process things in a constructive way. In a big way, this space has always and will always be for me. A big part of Seeking Sara is unraveling myself and finding out who I am inside. (Alexa, play the Mulan soundtrack!)

But I also want to be open about it because if it weren’t for people in my life being open about their own struggles, treatments, and roads to recovery (including potholes along the way), I never would have been brave enough to seek help. So another massive reason I am being open about this topic is in order to reach out to others to say, “You are not alone.”

The last big reason I am writing about my disordered eating on Seeking Sara is that it is not unrelated to being Autistic. I began subconsciously, (then more consciously, but to my deep shame and suffering) using food, bingeing, restricting, and overall disordered eating to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life.

Bingeing has become a type of self-harm stim to me. Restricting has become a way to control at least something in my life when I so frequently am overwhelmed by the world around me, not to mention my various health issues and disabilities. But these are not healthy or productive ways to cope. The fact that I can see that now is not a small baby step, but a giant, giant leap toward my long marathon run toward recovery.

One reason I avoided seeking help for so long is the uncanny ability eating disorders have to convince you that they are no big deal. Cycles of denial and acceptance are pretty much guaranteed companions during anyone’s treatment and recovery. I have no doubts that I will struggle back and forth for months–and probably years–to come, but now that I know that and accept that, it makes it easier to cope.

So how did I decide I really did have a problem I needed to address?

I’ve known for a long time, but the final tipping point was a journal assignment my therapist gave to me. The prompt was, “What is your relationship with food like? Write a letter as if it were a real person.” The two images below are my letter to food.

(If you are using a screen reader, please click the images. Alt-text is attached.)
An image of a purple notebook page with text on it. The date reads January 1, 2019. Above the date is a branch with red buds. Text reads, "Dear Food, We need to talk. My relationship with you has been unhealthy for 18 years. It's true that I can't live without you, but sometimes you make me feel like I can't live with you either. You are nourishment, energy, life, necessity. You are addictive, controlling, an unhealthy coping mechanism. I need you. I love you. I hate you. I hate that I need you. You provide me with escape... and yet I can't seem to escape you. The solace you provide is temporary and leaves behind regret, frustration, and a shame.
The second page of the letter reads, "Where you soothe, you also blister. You are a gulp of cool water laced with poison. We need to talk. We have 28 years to evaluate--18 of them troubled. You know I won't ever leave you, but things between us are about to change. I can't leave, but I can loosen your hold on me. I will no longer use you as a crutch that feeds me lies and self-hate. We need to talk. Sara." Beside Sara's name is a graphic of a pen. Under her name is a branch with blossoming red flowers.

Was I shocked by what I wrote? Extremely. What started out as a seemingly-silly therapy homework assignment that I was doing only grudgingly soon pulled emotions up from deep within me as the words cascaded onto the page. What I expected to be a few lines or bullet points in my journal turned into a chilling look at how I really felt. It captured the push-and-pull, back-and-forth, ebb-and-flow love/hate relationship that I’ve been running from since I was 10.

But, like I said: Denial and acceptance are at constant war within me. The next day, I was back to the complacent “I’m fine” attitude. But this time… I had something to look back on. I looked at that letter and felt those same feelings rising up in me again. And suddenly… I couldn’t turn back. I couldn’t go back to believing everything was fine…

But more importantly, I didn’t want to.

So what now?

Well, I’m diving in to treatment head-first with my therapist, continuing to journal (no matter how silly a prompt seems), talking with my loved ones who have eating disorders, doing seemingly small things like asking doctors not to tell me my weight, and reading lots.

I’m cycling back and forth between two books:

The simple yellow cover of Body Respect: What conventional health books get wrong, leave out, and just plain fail to understand about weight. By Linda Bacon and Lucy Aphramor.

1) Body Respect by Linda Bacon, PhD and Lucy Aphramor, PhD and RD (Amazon link here).

The pretty yet simple white cover of Life Without Ed: How one woman declared independence from her eating disorder and how you can too. By Jenni Schaefer.

2) The 10th anniversary edition of Life Without Ed by Jenni Shaefer (Amazon link here).

Cycling between the two has been invaluable to me so far. Body Respect challenges our views of weight, fatness, calorie counting, dieting and more, while Life Without Ed shows me that I am not alone, shows me recovery is possible, and teaches me very practical techniques that I can use.

Getting to Know the Enemy

One of the most important things I have learned from Life Without Ed so far is the concept of naming my eating disorder. By doing this, I can begin to separate out thoughts and impulses that are genuinely mine and which are from the eating disordered part of my brain. It also gives me something to roll my eyes at and tell to go away!

One exercise I did once I named my disorder was to write down all the things it says to me. Once again, what I thought was kind of a silly activity turned into me easily writing a page and a half of terrible things that it says to me–and has done for 18 years. That was another eye-opening moment for me and one that will stick with me throughout treatment and well past recovery.

So there you have it. I have an eating disorder.

But I’m not terrified like I have been for years. I feel anxious. Sometimes I feel powerless. Sometimes I feel like I can’t do it. Occasionally I still feel denial. But now I know how to recognize these feelings and thoughts as products of my eating disorder, not myself.

I have an eating disorder… and I’m going to kick its butt.

A meme with a photograph of a sunny path through the woods. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone."I have an eating disorder...and I'm going to kick its butt."

[Featured image, image description: A photograph of a sunny path in the woods with shadows from the trees stretching across it. Text reads “Starting Down My Path to Recovery. Seeking Sara.”]

Anniversary Interview 4: My Parents

Anniversary Interviews

Welcome to the last anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with: (link opens in new tab)

1) New friends: Anniversary Interview 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

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!


Anniversary Interview: Mom and Dad

1) What were some of your initial thoughts when I came to you about the possibility that I might be Autistic?

Dad: Well, my first reaction to the notion was “Huh?”  My only personal experience was with children, and most of them were very “low-functioning” boys with “classic” (that is to say, stereotypical) behaviors.  The “highest functioning” high school boys I knew were still largely non-verbal, avoided eye contact, acted out if they didn’t get what they wanted. Not knowing how autism is often manifest in women, I’m afraid I was kind of dismissive because I didn’t see the stereotypical behaviors I had (wrongly) come to associate with autism.

Mom: My first reaction was, “What?”  I mean, Dad’s describing experiences with my students and children from church.  I know a lot about autism, but in retrospect, it’s mainly with autism that creates very diverse and multiple learning needs, including large communication challenges.  Autism is a spectrum, but I had predominantly studied the more challenging end of the spectrum.

2) Is there anything you would have done differently as a parent had you known?

Dad: This is a difficult question to answer.  I admire who you are as a young woman, your many insights and talents, ability to articulate your thoughts, your witty banter.  So, is this who you would be today if we had raised you differently? I think we went to bat for you at school when we knew about issues, but you kept your experiences of middle-school bullying so private that we didn’t know until you were in college.

Mom and Dad: Maybe we would have found a different way for your piano lessons so they would have engaged you more appropriately/deeply, or would have understood that horseback riding was more like therapeutic riding to you and not just considered it a hobby.

Mom: You always had such unique needs anyway, due to your dietary difficulties, that I think we pretty much dealt with whatever presented itself.  There may have been things that went on internally, but you rarely shared inklings of those things.

3) Looking back at me in my younger years, what kinds of things make more sense to you now?

Dad: You may have a different perspective on this than we do, but we tried to raise our children to lead their own best lives, to speak their minds, to develop their interests and talents as they emerged.  We took you to soccer as long as you were interested, not because we dreamed of you being a pro-soccer player.

We didn’t have plans for you to be a straight-A student, or grow up to be a doctor, or a lawyer, or a pastor, or a teacher.  So we always tried to engage the “you” that was presenting at the time, not some artificial expectation of a “you” we had in our own imaginations. For example, you were frequently around hundreds of people (at church, etc.) and we let you engage — or not — as you wished.

Mom: We’ve always raised our kids to be their individual selves, so any journey of self-discovery is great!

Mom and Dad: Since we were taking our cues from you, we’re not entirely sure that knowing about your diagnosis sheds any more light on things.  At least, we don’t have any memories of thinking, “Why is she doing that?!” that knowing about autism helps us understand in hindsight.

Dad: Maybe I wouldn’t have insisted so much on giving goodbye hugs and kisses to grandparents if I’d known how uncomfortable they made you.

Mom: I wouldn’t have insisted on those anyway.  I’m an introvert, so I understand personal space and value quiet or less chaotic environments.

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

Dad: The more you learn about yourself (not only regarding autism but also ADD) the more comfortable you appear to be in your own skin, if I can put it that way.  You understand (and own) that your needs are valid and are perhaps your own best advocate for them, such as wearing noise cancelling headphones in noisy public settings regardless of what others might think.  That’s really great!

A meme with a cityscape background and a white diamond in the middle. The text reads "The world is such a loud place and it seldom stops talking. Wearing noise-cancelling headphones allows me to filter out the assault of noise and focus on your voice. SeekingSara174.wordpress.com." There is a graphic of blue headphones in the middle with a tiny heart between the earphones.

Mom: It seems like you have fewer fibro[myalgia flare] days, and this may be because of paying attention to your sensory needs and knowing to take breaks when you need to.

Dad: Yeah.  You continue to push yourself, but now understand the importance of respecting your internal pacing rather than trying to please some external measure of success.

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

Mom and Dad: I think we’re both really proud of your blog.  It’s quite an ambitious undertaking, and it’s been great to see not only your personal growth in self-awareness but also the number of others who are gaining insights into their (or their children’s) lives.

Dad:  I’m probably biased, but many blogs seem to be rather shallow (“This is what I’m wearing/eating/doing today…”) but Seeking Sara has real depth to it.

Mom: We’re wondering if there are things you think we could have done differently for you in your childhood if we had known.

Dad: I would like to read more about how music affects you, and if there are ways you use music to accomplish certain tasks that you would find otherwise difficult.  For example, if you get anxious before a doctor’s visit, are there certain types of music you listen to that help you center and stay calm? If you become fearful on a long car ride, does music help you address the fear (not just help pass the time)?  I’m also curious about the observed connection between autism and the microbiome/GI issues, but I don’t know enough about this to frame any specific questions.

Mom: I’d also like to know more about how autism gets diagnosed outside of a school setting, because that’s all I’m familiar with.


A huge thanks to my parents for being so brave and open-minded when doing this interview. I love you guys!

A massive thanks to all the people who agreed to be in the spotlight. You guys rock!

And lastly, a big thanks to everyone who read the interviews!

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

Anniversary Interview 3: My Husband

Anniversary Interviews

Welcome to the third anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with:
(links open in new tab)

1) New friends: Anniversary Interview 1: New Friends

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

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!


Interviewing My Husband

1) I told you very early on in our friendship that I was probably Autistic. What were your initial thoughts?

My husband: I hadn’t had any close friends who were autistic before, so I didn’t really have any preconceived idea about what to expect. I knew that I liked you and we were getting along well, so I was happy that you were willing to be open with me. I was glad you wanted to help me get to know and understand you better.

2) What’s it like being married to an Autistic person? What are some of the things you love about my being Autistic?

My husband: It just seems like such an integral part of who you are that I couldn’t imagine and wouldn’t want you to be any other way. I try my best to pay attention to when you might be overstimulated or near a meltdown and do what I can to help you avoid or recover from those situations. I definitely find myself noticing strong smells, sights, and sounds that may cause problems for people with sensory issues more than I used to.

I have learned so much about autism and the autistic community and I try to use that knowledge to better myself and be a better ally.  I really appreciate you teaching me about how diverse the autistic community really is in terms of race, gender, sexual orientation, interests, etc. It is vitally important for allies to listen to autistic people’s narratives and stop spreading misconceptions.

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

My husband: You’ve been self-advocating and much more willing to stim and be yourself around others. I’m very proud of you and it’s inspirational to see you start being more authentically you.

I now realize how much you have to mask and what a drain it is on you. I can tell what a relief it has been for you to start masking less when you feel comfortable.

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

My husband: I think it’s amazing and so important for you to share your experiences. I’m so happy you’ve been able to reach and help so many people.

I really liked your podcast with Jeanette [Purkis] and your collaboration with Elyana [Prismatic] and would love to see/hear more collaborations with other bloggers and advocates out there. I’m proud of how hard you work to be an advocate, and are part of such an important movement of autistic people being heard.


A huge thank you to my lovely husband for letting me interview him. I love you!

The next interview will be with my parents!! Stay tuned for that next week.

Thanks for reading!

[image description: A picture of green leaves and a few purple flowers with a big white rectangle placed on top of it. Text on a blue box reads, “Interviewing My Husband About My Autistic Self.” The word “husband” are written in green while the rest is written in white.]

Anniversary Interview 2: High School Friend

Anniversary Interviews

Welcome to the second anniversary interview where I interview loved ones about my Autism diagnosis! To read more about why I’m doing the interviews, check out the first interview (linked below).

The interviews will be with:

1) New friends: Anniversary Interview 1: New Friends (link opens in new tab)

2) A 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!


High School Friend: “Billy Bob”

Note: My friend has asked to use a fake name in this interview. True to her hilarious nature, she has chosen to be called “Billy Bob.” I want to thank her for stepping up to do this interview and agreeing to be the solo interviewee this round!

1) What were some of your initial thoughts when I told you I might be Autistic?

Billy Bob: When I first heard that you might be Autistic I was kind of surprised and shocked only because I had no idea about most of the things you’ve been going through. Although you did share some things that were happening in your life, I wouldn’t have guessed that Autism could be a factor.

2) You’ve known me for a long time. What did it feel like to find out how much of myself I had (unintentionally) been hiding from you?

Billy Bob: So kind of similar response to the question above with being shocked and surprised. I was also sad to know that you have been hiding this for a while and didn’t share with friends who care about you, but I could also understand why you didn’t share sooner.

I can only imagine how hard it was to be going through this newfound information by yourself or with only a few people aware. I also know it is not easy to open up about personal things. It is hard, scary/nerve-wracking, personal, new to you, and you’re still trying to process and understand it all.

3) Looking back at me in high school years, what kind of things make more sense to you now?

Billy Bob: Well, I know we didn’t talk too much in the beginning of high school and it wasn’t until we were in summer gym classes together that we really started to speak more and become friends.

I always thought it was cool that you were in choir. I admired people who could not only sing, but also have the guts to perform in the school plays and color guard. I think we really bonded when you asked me to read the book you began writing.  Reading and writing were always things you loved to do since I’ve known you and it hasn’t changed because now you’re writing your blog!

So looking back you were still reserved kind of like you are now, but not as much as before. With Autism, I know it must be hard to openly talk to and be around people so being reserved like that makes sense now. You also have always enjoyed music and I think it was a way you could escape from social interactions without even intentionally knowing it.

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

Billy Bob: I have seen so many positive changes in you, not only this past year, but since I’ve known you. Since opening up about your Autism you’ve been able to share a part of yourself that you were afraid to share (which, like I said before, you have every right to be nervous!) Like I stated earlier it is not easy to open up about something that is new to you for the fear of being judged, not understood, etc.

I’m so grateful that we’ve become closer every year of our friendship and still continue to become closer. And we’ve learned a lot about each other and our similarities by continuing to talk and by even playing that silly Facebook quiz game (the one where we had to guess each other’s responses lol).

Also having the courage to start a blog to talk to the world about what you are going through is amazing. I don’t think the Sara in high school would have done that so I’m so proud of you for coming so far. And you even spoke on a podcast, which was fantastic and also a new experience you’ve conquered! So keep it up because you’re making wonderful positive changes. 

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

Billy Bob: So I think you already know this but I think Seeking Sara is wonderful. It is a great way to express all your new adventures and everything that you’ve gone through in this journey of life. It is also a great way to showcase your photography because I really like your pictures.

You’ve been able to explain what you are going through so as of right now there is nothing unclear for me, but if something comes up you know I will ask lol. And keep writing the content that you have because I cannot wait to read more!


A huge, huge thank you to “Billy Bob” for being so gracious and agreeing to do this interview, especially alone! You are fantastic!

The next interview will be with my husband! Stay tuned for that next week.

Thanks for reading!

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

How to Be an Accessibility Ally: Screen Readers

When I first started blogging, I had no idea that there were some simple steps I could take to make my posts much more accessible to my audience. I began adding descriptions to images on WordPress and Twitter and found that it’s really simple. I (naively) figured that most sites must be describing images that way. Then I met my friend Elyana who helped me test run some Voiceover software on my phone and I became painfully aware of how inaccessible most images are on the web.

Elyana has been gracious enough to teach me some basics about creating a more accessible space for visually-impaired and blind people on the internet, and she agreed to do an interview on the subject. I hope that you will take her words to heart and follow some easy steps that make the difference between accessible content and inaccessible content.

Following the interview are some how to visual guides for sighted allies who want to learn how to make their content more accessible. Happy reading!


Accessibility Interview: Elyana Ren

1) What is a screenreader and how does it work?

Elyana: Screen readers give blind and visually-impaired people access to computers, phones, and smart devices. A screen reader is a software program that interfaces with an operating system to render the visual elements (i.e. what’s on screen) into text that is ‘read’ out by a synthesized voice or which can be read on a connected braille display. The screen reader user then uses the keyboard to interact with those elements.

I would like to take this time to point out that, while most screen reader users are blind or deaf-blind, this does not mean that some don’t navigate by using residual vision (with or without magnification software.) Likewise, most screen reader users just use speech to navigate, but many use speech and braille or only braille, in the case of some deaf-blind people. But the concept is still the same: screen readers take what is on screen and present it to the user in a format that is accessible to them.

Note: The following video was created by Sara to give an example of how a screen reader might read text and image descriptions. It is a highly abridged version of what most screen readers can do.

To navigate around a website, for example, the screen reader relies on the HTML code of the page to tell it how to ‘speak’ the elements to the user. Websites tag multi-level headings, links, form fields, buttons, images, and other elements, and screen readers can read that data to the user. If, for example, I were on the Seeking Sara blog, I could hit the letter H and my screen reader will jump from heading to heading, allowing me to scroll through blog titles in the same way someone would scan visually. Once I’ve found the title I was looking for, I can simply use a keystroke to click on it and then read it by either using the arrow keys (like one would in a word document) or using another command to jump from paragraph to paragraph.

The same concept is applicable to screen readers on smartphones and tablets, such as Voiceover for iOS. Basically, when a screen reader is enable on a smartphone, it adds a sort of overlay atop of what is shown on screen so that the user can hear what is under their finger before they click on it. Then, like with letter navigation on the computer, we can use gestures to have the screen reader read out different things, such as headings, words, or characters.

2) What kind of obstacles do you encounter on the internet? What sites are generally inaccessible for you?

Elyana: As mentioned above, screen readers rely on the underlying HTML code of websites to communicate to the user what is on screen so that  the user is able to interact with that content. One of the biggest barriers to accessibility is when things are improperly labeled or not labeled at all. For instance, some sites are completely graphically-driven, meaning that all my screen reader will see and read back to me is a giant image — even if there is text visually on screen. I don’t know enough about web coding to provide exact details on how to fix this, but I have seen enough wonderfully accessible sites to know that it is completely doable.

Another thing that makes navigating sites a little more difficult is videos that autoplay. Not only is it distracting, but screen reader users usually rely on speech output, so it is very difficult to do anything if all I can hear is an ad for the latest game or something. Some web browsers do make it so that you can do a keystroke and it will mute the active tab, but not all of them (as far as I know).

3) What are some of the most accessible sites for you? What do they do that makes the difference for you?

Elyana: The best sites are designed inclusively. This means that they take the time to make sure that everything on their site is accessible not only to screen readers, but also to people with other accessibility needs. This means that everything behind the scenes is properly labeled but also that visual elements, like graphics, background and text contrast, text size, and font choice are also taken into consideration.

4) What is alt-text? What is an image description?

Elyana: Essentially, alt text is a tag someone can add to an image that will make it accessible. I hesitate to call it a caption, because I feel like the trend nowadays is to use captions to comment on a photo rather than describe it. So this is where an image description comes into play. An image description, which is basically what it sounds like: text that describes an image for blind and visually-impaired people, is placed in the alt text field of an image in the HTML code of a website to tell a screen reader to read the description aloud. Otherwise, a screen reader would just read the metadata (i.e. time stamp/file name) of a photo, or simply read it as “image,” neither of which gives us access to said photo.

5) What makes a good image description?

If I’m being honest, image descriptions are so under-used that I get excited when I see any described photo; however, there are certain elements that make a description more effective than others. Some descriptions I have seen are as brief and to the point as “A girl collecting leaves in a wagon,” providing enough of an overview that I can synthesize it with whatever post it is attached to. Some can be longer, such as “A young blonde girl in brightly colored clothing collecting autumn leaves in her shiny red wagon”, which gives me a better understanding of the perspective or mood of the photo. So for me, a good description does not depend upon length as much as it does on helping me understand the aim of the image.

The image in Elyana's example. A young blonde girl in brightly colored clothing collecting autumn leaves in her shiny red wagon.

6) Some people may be hesitant to use certain things in descriptions, such as color. Should people worry about those things? Is there anything you personally don’t want to be in a description?

I can’t speak for everyone, but I don’t want people to feel hesitant or worried about using language that talks about visual things around me — not just in image descriptions but in everyday conversation. For me, color is just another tool I have in my vocabulary of descriptors. So I guess the short answer is: I can’t think of anything I don’t want in a description because anything that can go in a description is just providing me with a deeper understanding of the image.

7) What are some other ways people can make the internet more accessible for visually-impaired and Blind people?

I think one of the things people might not realize is that not all images that are just blocks of text on a colored background are not necessarily accessible to us. There are apps that strip text from pictures, and Facebook has added a layer of accessibility to help parse some memes, but most of them are just an image that screen readers can’t read. One of things that would help is adding a description to those types of images. It can be as simple as typing the text in the body of the post or, in the case of Facebook, pinning a comment to the post in question.

Another thing that is helpful is to capitalize the first letter of every word in a hashtag because screen readers will read each word separately instead of trying to string together all the letters into a mush of phonemes. For example: when my screen reader sees: #allforoneandoneforall” it tries to put all of the vowels together, resulting in me hearing: “alforowndeenodanaforal.” But when the hashtag is written like this: “#AllForOneAndOneForAll,” my screen reader knows to separate out the words, resulting in me hearing “all for one and one for all” as intended.

Final comments from Prismatic:

The last thing I’d like to say is that I appreciate all of Sara’s work to make her content more screen-reader-friendly. I can’t speak for other access needs, or any other blind person, but I am very grateful for creators who go out of their way to ask their audience what they need to be able to participate in their content.

Finally, thank you all for reading this post! I know that it can be a hard thing to remember sometimes, or maybe a hard thing to go back and fix, but really, I just ask that you try to use some of these tips moving forward. I am open for questions or discussion and am happy to provide feedback on your content if you want. I can also provide funny screen reader fails, because they can be pretty awesome!


ABOUT ELYANA

Elyana and her yellow lab guide dog. Yana is laughing with joy as her dog turns to lick her face. Yana wears a green Hufflepuff sweater and a plaid hat.

Elyana Ren is a proud Hufflepuff and unquenchable bookworm. She grew up in the middle of the Pacific, but found herself after moving to the Pacific Northwest. Her works feature the authentic experience of being disabled, neurodivergent, and queer. When she isn’t writing, she uses the creative arts to empower others to trust and love their own voice. Elyana can be found on Twitter @aprismuncovered and on www.aprismuncovered.wordpress.com. If she isn’t there, she is probably in the company of a few good books, her guide dog, and her collection of plushies. Actually, always check there first.


Below are some visual guides created to help sighted people turn on and use image description options.

How To Add Image Descriptions on WordPress

A visual guide detailing how to add alt image text to images on WordPress.
EDIT: YOU CAN ADD ALT TEXT TO FEATURED IMAGES! Go to EDIT–>Featured Image (on the righthand side of the screen)–> After you assign a featured image, hover over the pencil icon to edit–> Add in description in Alt Text box!

How To Add Image Descriptions on Twitter via Computer or Phone

For Twitter’s explanation (without image guide) including Android instructions: https://help.twitter.com/en/using-twitter/picture-descriptions

A visual guide detailing how to add alt image text to images on Twitter from a computer.

 

A visual guide detailing how to add alt image text to images on Twitter from a computer.

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.]