To the ‘Weird’ Girls Who Don’t Quite Fit In

I’ve been thinking a lot this month — about my past, my present, and specifically about my late diagnosis of autism at the age of 34. Looking back, I realized I first started considering the possibility that I could be on the autism spectrum after reading the stories of other women and girls with autism. Since their stories helped me learn more about myself, I’ve since been inspired to share my own experiences, in the hope my story might help someone else who has been struggling. So here is my open letter to all the “weird” girls who might have undiagnosed autism.

Dear “weird” girl,

I was once like you.

I didn’t talk much as a kid. Didn’t care to make more than one friend. I was perfectly content playing on my own or just reading. I liked to play with my toys in my own way — I’d arrange them in perfect little rows, or assemble them into static scenes. Sometimes I would be so focused on my reading or toys, I wouldn’t hear my mother repeatedly calling for me. My parents had my hearing checked when I was young. I passed with flying colors, but I still didn’t consistently respond to the sound of my own name.

I was also clumsy and uncoordinated. I burned myself while cooking on a regular basis. I banged my elbows into corners and clipped my toes on the edges of furniture. The clumsiness persisted, even after getting glasses and having my ears checked.

I didn’t “get” other people a lot of the time. Jokes that sent others into stitches of laughter flew right over my head. Practical jokes were the worst. I never felt as clueless as I did when I was the butt of a joke I didn’t understand. I learned to fake it, how to play along until the moment passed. I faked my way through a lot of social interactions and conversations.

As I got older, I lost myself in movies and music, or that magical combination of both: musicals. I would watch Disney movies over and over, memorizing not only the lyrics to the songs, but the dialogue as well. Characters in musicals had clearly defined roles, and they sang explicitly about their feelings. I understood them in a way I could not understand the people around me. I still love Disney movies, cartoons, video games, collecting toys and stuffed animals, and other supposedly “childish” interests. They keep me calm, help me right myself when I’m feeling stressed out. They make sense in a world that often doesn’t make very much sense at all.

I had trouble transitioning from childhood to adulthood. Learning how to manage money on my own, how to take care of myself, how to be successful at a job — it all took more effort than I anticipated, given how easily I had sailed through elementary and secondary school. College was a lot harder, and it took me a few tries to get it right.

These days I struggle at work. It’s hard to talk to new people. I miss social cues. I laugh at inappropriate times, or when I’m nervous, or when I don’t understand something. I’m rude without intending to be. I don’t always pick up on people’s emotions, and when I do, I sometimes struggle to understand why they feel that way. Sometimes I need to be told not only what someone is feeling, but how they want me to respond, how to help them. I have trouble explaining myself and defending myself in conversation. I have trouble keeping my emotions in check.

It’s hard for me to follow conversations with more than one person. I struggle with knowing when it’s my turn to speak. I constantly interrupt others, or walk away without saying goodbye or properly ending the conversation. I find that scripted, predictable conversations work best. I am not a fan of eye contact. I sometimes need specific instructions in order to know how to perform new tasks. Without that guidance, I try to fake it and learn by copying others. I’d rather look things up on the internet than ask someone for help. I struggle with concentrating and organizing work tasks, but I love to catalog and research things relating to my own personal interests.

I like to follow a routine as much as possible. Deviating from it causes me anxiety. It took me a long time to realize how stressed I was by bright lights, loud noises, big crowds, itchy fabrics and foods with weird textures. It’s even worse when I’m sick or tired. When I’m upset, flapping my hands rapidly helps me calm down in a way that’s hard to explain to other people.

These sensory sensitivities, and a lot of other things about myself, don’t really make sense to the average person. People who aren’t that familiar with autism don’t know what to make of it. To them, I’m “weird.”

Maybe you’ve been feeling lately like you’re “weird,” too. Maybe the things people find odd about you don’t match up exactly with mine, but the end result is similar: feeling like you’re alone a lot of the time, like no one else understands what life is really like for you. If so, I want you to know it’s not your fault.

“Weird” girl, I was once like you — and I suppose I still am.

The parts of me that seem so “weird” to others are still there. They’ll always be part of me. But all those weird little traits and awkward moments in my life start to make a lot more sense when you look at them through the lens of autism and anxiety.

I spent three decades of my life wondering what was wrong with me, why I didn’t fit in, why I didn’t act the way other people do. I was so focused on what I was doing wrong that I didn’t notice all the things I was doing right. I constantly forgot that I was smart, that I could be a good problem-solver. That my brain made me think differently than most other people, and that difference could make me more creative. That I am a good writer. That I can be a great listener.

That I am, underneath all the “weird,” still a person. It took me a long time to get here, but I like who I am today.

So if you’re feeling down or stressed out, and you’re worried that your life is falling apart for no good reason, and you can’t figure out why you are so much more overwhelmed by the world around you than everyone else seems to be — don’t fret. Don’t be afraid to ask for help. Don’t be scared to speak to a professional about the difficulties you’ve been experiencing. Don’t be intimidated by the possibility that your brain might be wired a little differently than you expected. It may be autism. It may be anxiety. It may be depression, or bipolar disorder, or a host of other diagnoses. But none of these diagnoses mean that you’re not still you.

You are not wrong, or broken, or stupid. You don’t lack “common sense” or the ability to take care of yourself. You might need some extra supports, but you can learn to manage. You can be a successful adult. You can be a happy, fulfilled person. You can have a life worth living.

Don’t be afraid of finding answers.

Right now, you’re like a traveler arriving at a new destination. The customs might be confusing and unintuitive, the locals might look at you funny, and people may not always understand what you’re trying to say. But once you return home, everything just makes sense. For me, getting a diagnosis of autism was like coming home.

Dear “weird” girl, I hope you find your home someday soon. It’s out there, so don’t lose hope. Keep searching, and one day, you’ll find your people. Someone else who speaks your language, who understands why you do the odd little things you do. In finding them, you’ll find out more about yourself. Things will start to make sense.

It won’t fix everything. You’ll still struggle, and the world will continue to be a strange and stressful place, but understanding why you struggle may make it all more bearable. It can also help you to figure out what to do next, how to better deal with the overwhelming world around you.

You’ll still be that same “weird” girl. You’ll still be you. But you’ll also be something greater. Taking the time to learn more about yourself, and using that knowledge to take the necessary steps to better yourself is one of the best risks you can take in life. So be brave, little one, and let that be your new moniker.

Don’t settle for just being the “weird” girl. Be the brave one, too. An adventurer setting out on a new journey. Your home is out there. Let’s go find it.

Originally published on The Mighty

I Expected My Autism Diagnosis, but Not My Anxiety Disorder

Did you know you can have anxiety so severe it impairs your ability to concentrate and complete work? Here are some examples of generalized anxiety disorder (GAD) at work:

  • Procrastinating because you’re afraid you’ll do it wrong and screw up and everyone will hate you? Anxiety.
  • Starting something and then getting distracted by some insignificant thing that doesn’t matter nearly as much as the original task you set out to complete, but now you’re obsessed and can’t get back to work until you get rid of that one silly little thing? Anxiety.
  • Refusing to ask for help because you hate to be a burden on others and you’re afraid you’re supposed to already know how to do this one thing so by asking you’re admitting you don’t know and now you’re afraid you’ll get in trouble and everyone will be mad at you? Anxiety.
  • Taking someone’s silence to mean they’re mad at you and will hate you forever for some silly thing you have no control over? Anxiety.

Notice a common thread here? An overreacting brain that constantly jumps to the worst-case scenario. For everything. Daily.

I recently sought out a formal diagnosis of autism spectrum disorder (ASD) from a clinical psychologist, hoping to get some recommendations for reducing the level of stress I felt in my daily life. I wasn’t expecting to be diagnosed with generalized anxiety disorder as well.

Being anxious is one thing. I know everyone gets anxious. I just didn’t realize there is a huge difference between typical anxiousness and the “OMG, I can’t breathe and I’m going to throw up” anxiety I sometimes feel. Often feel. To the point that my evaluation report states my anxiety “continues to impair [my] ability to function in everyday life and presents a significant concern.”

And while I’m feeling this severe anxiety, my face is blank and I look completely normal. But on the inside, I feel like I’m falling apart.

The recommendations in my evaluation report suggested I find an Asperger’s support group, and maybe find a therapist who can help me work on my social communication skills. But it straight up told me to get help for my anxiety, be it from a therapist (with some good, dependable cognitive behavioral therapy, which has worked well for me in the past) or from medication, or both.

Since I was expecting the autism diagnosis, I was more thrown by the anxiety disorder. My husband and I had figured  most of my anxiety stemmed from my autism — e.g., it’s too loud in here so I’m anxious, there are too many people talking to me at once so I’m anxious, I want to finish this thing I was working on but now I’m being interrupted so I’m anxious. But after answering several pages of assessments that asked me if I was anxious in a variety of specific situations, it turns out I am in fact very anxious in a lot of specific situations.

So now I’ve got to work on it. I’ve adopted some stress-reducing strategies in my life already: meditation, relaxing white noise, writing things down to get them out of my head, making to-do lists, prioritizing tasks on my to-do list, using templates and outlines to help me to get started on big scary projects, etc. But there’s still more to do. Apparently, my frequent stomachaches and my near-constant fatigue will get better if I do. Isn’t it strange that I’m so anxious, my clinical psychologist says I am literally exhausted from worrying so much? It’s extreme.

And this is what I always thought “normal” was like, but now I’m reading more about anxiety and starting to realize I’ve been dealing with a lot of unnecessary stress in my life for a long time.

I worry about everything. I worry about literally nothing. My brain has trouble keeping quiet, and trouble gauging what’s truly life-threateningly important and what’s just of moderate importance. To the point that they put a name on it, qualified it as a disorder, a mental illness. Beyond normal limits. It’s intense.

People with autism are often also diagnosed with anxiety, but it’s still this whole other beast I’ve got to learn more about and get used to living with. I’ve got to learn more about how my brain works, so I can more effectively work around it and make my life a little bit easier.

But knowing it’s a problem is the first step.

Now, we can work on making it better.

Originally published on The Mighty

Thinking Person’s Guide to Autism: New 1 in 59 CDC Autism Prevalence Rates Approach Reality

“What this report demonstrates most clearly is that ‘autistic people—of all ages, races, and genders–have always been here’; we just need to get better at finding them.”

“When the United Kingdom conducted an adult prevalence study, it found the same rate of autism in adults as children, helping to debunk public hysteria over a so-called ‘autism epidemic.’”

“The CDC’s adjusted prevalence rate will probably still be criticized by those unfamiliar with the contributing factors… Non-autistic people aged 40 and older frequently make assumptions such as, ‘we never had autistic kids in my school’ and ‘I never knew anyone autistic growing up,’ when what is more likely is that they went to school with and knew plenty of autistic people who were undiagnosed—and who typically had to survive a lifetime of bullying and other abuse without appropriate supports or any understanding. They probably also never met high-support people… because in previous generations disabled children with the highest support needs were usually either automatically institutionalized or hidden away at home, and so never had a chance to become part of their communities.”

via THINKING PERSON’S GUIDE TO AUTISM: New 1 in 59 CDC Autism Prevalence Rates Approach Reality

The Real Reason You Don’t Believe I’m Autistic – The Autism Pastor

“Stereotypes, whether intentional or not, are the reason why I didn’t know I was autistic, and it’s the reason that most people don’t think I am autistic today.

We have a lot of work to do to educate more people about autism. Autism can’t be reduced to how one externally functions in the eyes of society. The ability to talk doesn’t make me any less autistic than those who are nonverbal. On the other hand, the inability to talk doesn’t make other autistic people any less competent or valuable than those who are verbal.”

via The Real Reason You Don’t Believe I’m Autistic – The Autism Pastor

Autism Awareness Month Begins | Left Brain Right Brain

“One will read comments to the effect of ‘I didn’t see any autistics when I was a kid’. As in ‘autism is an epidemic! I didn’t see it when I was a kid’.

Rather than take that on for the millionth time, let’s start autism awareness month with this:

Thank you to those who changed the world so that I can go into public with my obviously autistic kid.

When I was a kid, people with disabilities were shamed. Mocked. Told to stay out of the public’s eye.

The world has changed. My kid’s life and mine are better for it.”

via Autism Awareness Month Begins | Left Brain Right Brain

Autism Day

Today is World Autism Awareness Day – and it’s also my first Autism Day as an officially diagnosed autistic person.

It took me a long time to get here.

In elementary school, my parents had my hearing checked by an audiologist. I didn’t consistently respond to my own name. I didn’t talk as much as I should’ve at school. I was painfully shy and had severe separation anxiety. I read books, alone, at home and at school, and I did not make an effort to socialize with my peers.

In high school, I thought I might have schizophrenia – abnormal social behavior, and reduced social engagement and emotional expression all sounded like me. I didn’t hear voices or lose touch with reality, but I was often confused and I just didn’t understand people. I knew something about my brain was different than everyone else’s. But I kept all that to myself, and tried to be normal, by copying the behaviors and mimicking the speech patterns of whoever was my best friend at the time.

In college, they thought I was bipolar. I was “abnormally” happy, energetic, or irritated, then depressed, crying often “for no reason,” and making poor eye contact with people. I didn’t sleep much. I made “poorly thought out decisions with little regard to consequences.” The mental health specialists at Wellesley saw no reasonable explanation for my “mood swings.”

After college, I decided to teach Special Education. I empathized with my students, especially the ones who struggled so much but still wanted to learn so badly. I saw myself in them, especially the autistic ones. And as I read more and more about autism, especially autism in women and girls, the more familiar it seemed, the more it explained my childhood awkwardness and social difficulties, the more my life started to finally make sense.

And now, after diagnostic interviews and psychological assessments and conversations with a clinical psychologist who specializes in diagnosing autism in intellectually-able adults, here I am. Officially on the spectrum. Learning more about myself. Recognizing and acknowledging the anxiety that has made my life so hard for so long. Figuring out what adjustments need to be made to make everyday life more bearable.

Diagnosing autism in girls, and especially women, is so hard because we get so good at hiding almost everything about our autism.

I act how the people around me act so I can fit in. I watch TV and movies and repeat catchphrases and conversational responses so I can practice how to talk to strangers. I escape into TV and movies and musicals and books and video games because these stories follow rules and character motivations are explicit and everything just makes sense. I prefer writing because it’s so much easier for me than talking. I hide my anxiety so I don’t have to figure out how to explain to people why I’m so anxious. I only flap my hands about friends. I only obsess over things when I’m alone. I don’t ask questions when I don’t understand something because I don’t want to stand out – I just file it away to look up later. I Google everything I don’t understand. I’m a master at nodding my head and pretending I get it, when I really didn’t process a single thing.

I pull it together for 8 hours every day so I can go work at my first real adult job, and then I go home and do my best to recover, so I can do it all over again the next day. Pretending to be “normal” is hard work.

Thankfully, there are also many little things about my autism that people just tend not to notice.

I buy multiple sets of identical pants and the same shirt in different colors, so I can wear the same thing to work every week (it’s comforting). I still eat like a picky child, but that’s the fashionable hipster thing now, to order food a special way. I compulsively straighten shelves at grocery stores and eat my Skittles and M&M and chips in a precise order, but in a way that doesn’t call too much attention to myself. I line things up at home and on my desk at work, and I don’t like to certain things (like toys) to touch each other. And you really have to spend some time with me to notice that I hardly initiate conversations, it doesn’t always occur to me to share things with others, and I repeat so many random things.

I could go on and on.

I could write an entire book about this.

I just might.

But the point of this all was to commemorate my first Autism Day by sharing some of my story.

Every person with autism has a different story. We’re all good at our own special things, and not so good at other things. And just because some of us are able to act like a “normal” person for a few hours out of the day, it doesn’t mean that our autism isn’t real or isn’t a big deal.

So be gentle with the “odd duck” in your life. They may have autism, or anxiety, or both, or something else entirely. But they’re still human. They still have feelings. And they still probably want to be a part of other people’s lives – we just sometimes don’t know how to make social stuff work.

If you want to help, try to make things a little easier for us. Come to us, but still give us time and give us space. Don’t mock our special interests or our weird rituals (they calm our anxiety and make us happy!). Ask us what we’ve been learning about recently (you may have to give us a specific medium to talk about, like movies or video games). Take the time to invite us to social events, but don’t take it personally if we say no. Make places quieter and dimmer, if you can. Make things predictable. Write stuff down! Explain new stuff. Remember we think literally!

Don’t be afraid to comment on our stimming (hand flapping, bouncing or rocking, picking at our skin, etc.) – if it looks like we’re nervous and you’re just checking to make sure we’re okay, then we probably won’t get mad. Unless we’re already mad, then we might not want you to talk about it! It depends, sometimes!

We’ll likely still appreciate that you tried to help, that you care. People with autism are some of the most loving people I’ve ever met. They meet love with love, so if you approach people with differences with patience and love and understanding, then the world will be a better place for all of us.

So Happy World Autism Awareness Day, and Happy Autism Awareness and Acceptance Month! And thank you for taking the time to read all this and learn a little more about autism today! You rock.

What Do April Fools’ Day and Autism Awareness Month Have in Common? – Stars on the Spectrum

“Kids with autism tend to be very literal and jokes and pranks require a level of language sophistication that is not natural for them…. April Fools’ Day can be confusing and upsetting to many children on the spectrum.” – Deborah Griffith of “Stars on the Spectrum”

I love this little write-up on April Fool’s Day and autism. It explains both why people with autism are pre-disposed to hating the holiday, and how to better prepare autistic kids for the day.

I hated April Fool’s Day as a kid, and I still gets lots of anxiety about the day. I didn’t “get” a lot of people’s “jokes” – to me, it always felt like people were lying, then swearing up and down that they weren’t lying, and then laughing at me when I finally caved and pretended to believe them just so the conversation would end and I could leave. Or I would believe them right away and feel even stupider about the whole situation.

So yeah, be gentle with your autistic friends today! It’s also Autism Awareness and Acceptance Month!

via What Do April Fools’ Day and Autism Awareness Month Have in Common? – Stars on the Spectrum

Social skills for autonomous people. — Social skills: noticing when repetition is communication

While we’re on the subject of nonverbal communication, I was reminded of this awesome little Tumblr post.

via Social skills for autonomous people. — Social skills: noticing when repetition is communication

Teaching Learners with Multiple Special Needs: Accessible Communication Bill of Rights

“Let’s make a clear and meaningful Communication Bill of Rights, an Accessible Communication Bill of Rights. One that can be read by the average American, by the 1 in 5 Americans that read at or below a fifth grade level, by students from grade three and up. Let’s add symbols to support understanding for those who need them.” – Kate Ahern of “Teaching Learners with Multiple Special Needs Blog”

I love this. It’s a more simplified, visual version of the Communication Bill of Rights.

All of these points are valid and significant, but when I’m working with kiddos with limited communication, I always put the following 3 ideas first:

  1. the right to make meaningful choices
  2. the right to know what is happening around them and what is happening with the people they care about
  3. the right to have their requests acknowledged and answered, even if the answer is no

It seems like such a small set of things to consider, but it means the world to people who cannot communicate easily or move independently. Especially the part about making choices.

Everyone needs to feel some measure of control over their own life. The feeling of a lack of control can lead to some pretty random behaviors. I personally will perform a range of actions, from fidgeting and stimming to lining up and/or reorganizing items on the grocery store shelves. The less functional communication a person has, the more severe their behaviors can be, as a result. Food for thought!

via Teaching Learners with Multiple Special Needs: Accessible Communication Bill of Rights

What I Want People to Know This Autistic History Month

November is Autistic History Month — an event that is tailored to celebrate autistic history, culture and community, by sharing personal histories, art and creative writing about autism. Being recently diagnosed with autism myself, I thought I’d kick off the month by sharing a short history of autism, giving a quick rundown of what autism is, and sharing some thoughts on how autism applies to me.

First, a short history of autism:

1910 — The term “autismus” (or “autism”) is coined by Swiss psychologist Eugen Bleuer, referring to a subset of schizophrenic behavior. “Autós” is the Greek word for “self,” and Bleuer used it to describe patients who withdrew from others and focused solely on their own inner world.

1940s — Leo Kanner and Hans Asperger are both researching children with a similar condition — the former in the US in 1943, the latter in Germany in 1944. Kanner studied a group of nonverbal boys with more severe autistic traits, while Asperger’s “little professors” were more verbal (and thus seemed more intelligent), but had limited interest in socializing. Asperger considered his condition separate from “early infantile autism” (which is what Kanner’s diagnosis was ultimately called).

1967 — Bruno Bettelheim blames autism on cold parenting, leading to the (long since disproven) “refrigerator mother” theory, that autism was caused by uncaring parents.

1977 — Research conducted on twins shows that autism is genetic and caused by differences in the brain that occur during early development.

1980s — Autism is added to the third Diagnostic and Statistical Manual of Mental Disorders, or DSM-III, as a separate diagnosis from schizophrenia, with which it was previously paired. Autism is first added as “infantile autism” in 1980, then added again as “autistic disorder” in 1987.

1991 — The United States recognizes autism as a Special Education category for the first time, allowing schools to provide Special Education services to autistic students.

1994 — Asperger’s syndrome is added to the DSM-IV.

2013 — The DSM-5 (no longer numbered with Roman numerals) drops Asperger’s syndrome, pervasive developmental disorder, and other subsets of autism — putting everyone under the umbrella of autism spectrum disorder.

And here we are now, in 2017.

Of course, autistic people existed before the 1940s. We just didn’t know what autism was back then. Autistic people were the “deaf and dumb,” not responding when spoken to and declared “mute.” They were institutionalized or sent away from their families. There were reports, reaching as far as back as the 1700s, of “feral” children found abandoned in the woods — nonverbal but able to hear, uninterested in other people, and very set in their own ways.

Even up until the 1990s, many kids whose autism was characterized as severe were institutionalized. (This was what was recommended to Daryl Hannah’s mother when she was diagnosed with autism in the late 1960s/early 70s.) Others either suffered in silence without a diagnosis, or were misdiagnosed with bipolar disorder or schizophrenia, unaware that a difference in their brain structure was causing their difficulties.

Simply put, autism is a neurodevelopmental disorder that often affects social communication, causes restrictive and repetitive behavior (including intense fixations), and either increases or decreases certain sensory experiences. Also, autistic people tend to be very clumsy.

Over the years, I’ve learned to deal with my social and communication difficulties, typically by copying the behaviors and speech patterns of others. My obsessions aren’t super odd, compared to my peers (except for maybe my love of dinosaurs), and I can deal with most unexpected situations as they arise (saving the resultant burning out and crying for later, when I’m alone). I can also handle my clumsiness and motor awkwardness. I have personally accepted that sometimes, I’m just going to run into things, and that’s OK.

Hands down, I would have to say the worst part of my autistic experience these days is how my sensory sensitivities have increased with age. Things that used to only annoy me, like bright lights and loud noises and the textures of certain clothes, have slowly become more unbearable as time goes on. These feelings are amplified even further when I’m tired or don’t feel well. Since I can remember when these things didn’t bother me as much, I sometimes get frustrated when I get overwhelmed by sensory stimuli.

Other autistic adults have noticed this same pattern, with some complaining online about how unfair it is that, as they get older and work out various strategies to help with their social and communication issues, they suddenly have to deal with the inconvenience of heightened sensory input. As more research is done on the experiences of adults with autism, I would love to learn more about the ways the autistic brain changes over time.

So far, my life with an ASD diagnosis is pretty much the same as it was before, but it also feels, at times, completely different. I’m still doing my job and living my life, but every now and then, I stop and reflect on my diagnosis. I find myself wondering what I should do with this new information about myself. Who do I tell? How much do I tell them? Is it better to be proactive and disclose my condition before issues arise? Or would it come across as just an excuse if I waited to share my diagnosis until it absolutely needed to be shared?

As you can tell, there are still many issues people on the spectrum have to deal with. As Autistic History Month continues through November, I hope more people will take the time to consider what life is like for someone with autism.

To start, here is a video by Carly Fleischmann that simulates exactly how overwhelming and exhausting autism can be. I have started sharing it with some of my friends and co-workers, who have found the video to be very enlightening.

You can learn more about Autistic History Month at their official website.

Originally published on The Mighty.

The Surprising Childhood Event That Made Me Suspect I’m on the Autism Spectrum

I have been teaching special education for about four years now. When I first began my job, I was told that most of the students I would have in my class were on the autism spectrum. Eager to prepare myself for the challenge of teaching these kids, I became fixated on researching and reading all about children with autism.

Autism hadn’t really been “on my radar” for most of my life. I had a classmate with cerebral palsy in elementary school, but other than that, there weren’t a lot of kids with disabilities in my small town. There were, however, those few really awkward kids with limited social skills who, looking back, may have been undiagnosed autistics.

Full disclosure: I was totally one of those awkward kids.

During my research on autism, I came across an article on the surprisingly different ways autism manifests in girls. One of the people interviewed for the article mentioned that her parents had taken her to have her hearing checked when she was young. Her parents were concerned about how she did not respond when they repeatedly called her name.

I was shocked.

I lived in Oklahoma on and off during my childhood, but during my stay from 1989 to 1992, my mother insisted that my father take me to a specialist to get my hearing checked. She told him she would call and call for me, standing in the staircase, right below my room, and I would not seem to hear her. She would have to walk all the way up the stairs and actually come into my room to get me. She hadn’t had that problem when we lived in a one-story house and she could just walk down the hall to my room. I also had a speech impediment at the time, which could have been related, if I did happen to have any hearing loss.

So my father and I traveled to Lawton, about an hour away from where we lived at the time, to visit an audiologist. At the appointment, they asked me to wear a big pair of headphones and respond to a variety of tones. I heard every single one perfectly.

Autism wasn’t very well-known in the early 90s. Knowledge of Asperger’s or so-called high-functioning autism was even rarer, and autism was still thought of as a condition that mostly affected boys. The chances of that audiology appointment leading to a referral to talk to a psychiatrist or neurologist about autism were basically zero.

So I spent the rest of my childhood just being different. I preferred to play alone, or I would voraciously read books alone in my room. I copied the mannerisms and language of whoever was my best friend at the time. I obsessed over animated movies, celebrities and boys I liked. I collected art supplies that I rarely used but still desperately needed. I flapped my hands when I got upset — not all the time, just when I was close to melting down. I was torn between wanting to keep others around me happy (so they wouldn’t yell at me) and wanting things the way I wanted them.

I know now, after continuing my research, that my limited response to my mother’s calls likely stemmed from delays in verbal and auditory processing. My processing delays are especially amplified when I’m fixated on something. Simply put, when I’m super focused on something I love, it can drown out the world.

Now, as an adult, I’m discovering so many parts of myself that I share with other autistic people. Reading their stories online has explained so much about my life. The way I can lose myself in researching something for hours, and then follow it up by talking about it so much, so quickly I can actually lose my breath. My inability to share singular details without telling the entire backstory leading up to it. My aversions to certain sensory input, like bright lights and loud noises, and the opposing sensory-seeking and stimming behaviors, like wrapping myself in my comforter or squeezing my fingers.

My research on autism ended up not only helping me to better connect with and teach my autistic students, but it also helped illuminate my life. Now I can make changes based on what I know to make my life a little easier — sunglasses when it’s too bright, headphones when it’s too loud, removing myself from chaotic environments when I get too overwhelmed.

I am currently in the process of pursuing an official diagnosis of autism. I have spent several days this summer gathering stories, recalling childhood memories, and writing down countless examples that illustrate how I’m most definitely on the spectrum. For a while, I wasn’t sure I needed an official diagnosis. My research alone has already taught me so much about myself. But with a diagnosis, I think I’ll feel more comfortable telling people in my life that I’m not weird or “crazy” — I’m just wired a bit differently.

And my story will start with one surprisingly trip to the audiologist.

Originally published on The Mighty.

What I Found Missing From ‘Atypical’ as an Autistic Viewer

Netflix recently premiered the first season of its new TV show “Atypical,” about a young man and his family dealing with his autism spectrum disorder. While the show is garnering favorable reviews from critics, it has been a very controversial topic in the autism community.

To start, the show doesn’t seem to have any autistic people working on it, on-screen or off-screen, with the exception of a supporting actor who appears in a handful of scenes. The show’s creator, Robia Rashid, touts her deep personal connection to someone with autism, and states that some crew members have autistic children. Rashid also highlights that she met with a professor from California State University, who had previously worked at UCLA’s Center for Autism Research and Treatment.

Autism advocates replied that this was not good enough. They insisted there needed to be more autistic people involved in the show in order for it to be correct. They felt that Netflix’s decision to audition autistic actors, but ultimately hire a neurotypical actor to play the lead autistic role, was wrong. And they declared that the last thing we needed in entertainment was another weird straight white male stereotype of “mild” autism.

After viewing the show myself, I have to say that there are some parts of “Atypical” that feel right. Sam’s social misunderstandings, his intense dedication to research, an incident in which he knew he was being made fun of but didn’t know why, how he likes to wear the same clothes every day (100 percent cotton, his “favorite percentage of cotton”). But there were other parts of the show I didn’t love, where it felt like we were being made to laugh at Sam’s odd behavior, at his own expense – like the scene where Sam tries and fails to utilize his noise-cancelling headphones on a coffee shop date. I also really disliked Sam’s mother, who was a stereotype of the tragic mom who unselfishly gives up her entire life to support her severely disabled child.

Overall, I enjoyed the series for being a funny family show, but the more I thought about it, the more I realized that the show was missing something. We were getting a lot of the external signs of autism, but not enough of the internal. When Sam was lying in bed after a disastrous first date, I knew he was obsessing over every little thing he had done wrong that night, because I have done that myself. When the soft touches of his date led to sensory overload and an outburst, I wanted to see more of the build-up – I wanted to hear him tell his therapist how much of a struggle it is, to weigh whether it’s better to suffer in silence and try to overcome what you’re feeling, or whether you should say something and make a fuss and risk ruining the moment. There is a lot going on in the head of an autistic person when they’re quiet. I wanted viewers to have the chance to hear more of it.

All of which is a long-winded way of saying that it now seems obvious to me that the show was envisioned and created by someone who knows someone with autism, perhaps very well, but it is definitely not the same show we would be getting with an autistic person, or several autistic people, working behind the scenes. This is why I hope Netflix takes the autistic community’s concerns to heart, and makes a concerted effort to hire autistic writers, and more autistic actors, for season two of the series. I also hope that they try to bring in a character with autism who is female, or a person of color, or someone who has multiple disabilities, because diverse representation in the media matters.

It matters for the same reason that Wonder Woman matters, that Uhura of “Star Trek” matters, that Titus from “The Unbreakable Kimmy Schmidt” matters: people need to see themselves represented in movies and TV. These representations open up the possibility of courageous women, of a black female astronaut, of a gay black man feeling secure in his own skin. We see pieces of ourselves in the world around us. If those representations are positive and true, they can help us to understand ourselves better. They can give meaning to our chaotic lives. They can make us feel less alone. They may even be the impetus for a diagnosis that can help explain a lifetime of social ineptitude.

And while it’s easy to cast a female or minority character in a role that may not have much of anything to do with their gender or race (like that of a doctor or a police officer), representing autism is so much more difficult. Autism is a web of characteristics, not a single, visually-defining feature. Hollywood might be starting off small, with straight white males, but it doesn’t mean representation has to stop there. We will get our multi-faceted autistic characters in time. But it will go much faster if autistic people are included in the process.

Originally published on The Mighty.

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