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A Few Reasons We Go Undiagnosed, Part 1: Special Interests Beyond the Stereotypes

How many autistic characters have you seen in the media? A character on a favorite TV show, or from a movie? How often is the whole show then about autism, rather than a show that just happens to have an autistic character or two? One thing I've noticed in autism groups and forums is enthusiastic discussion of television/movie characters who, while not  officially  autistic, seem like excellent representations of the autistic experience. And while I acknowledge that we can't  really  know if someone is autistic without a comprehensive evaluation, the popular enjoyment of armchair diagnosis raises some really interesting questions: If these characters (who are entertaining and well-loved by autistic and neurotypical viewers alike) seem to fit the criteria for autism diagnosis, why isn't the media more full of canonically autistic characters? Why do we only get an "official" acknowledgment of autism when the character is a white male savant with the most stereotyp
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Which is it? The distinction between Stimming and Sensory Sensitivity

I want to talk for a moment about something that I think even the autism community is still starting to explore: the difference between stimming, and sensory sensitivity. Stimming   is a self-stimulatory behavior, performed in order to create a desired sensation. Sensory Sensitivity   is a heightened response to sensory input in the environment. Often, if a sensory sensitivity creates unpleasant feedback, we may perform an action in an attempt to alleviate the effects. This action may resemble a stim, but has the purpose of stopping a negative sensation, rather than creating a positive one. Let's start with some examples: Julie, age 15, is constantly touching, rubbing at, or picking at her face. Her rubbing will sometimes cause sores, and her picking will turn minor acne into open wounds. Her mother has tried to help her to redirect to a stim that won't hurt her; she worries that Julie will get infections in the wounds, and doesn't want her child to be i

Yes, You Are Autistic.

What if I'm not REALLY autistic? What if I'm just f***ed up, a failure, and I'm claiming the title "autistic" so that I can avoid facing that?? What if people only believe I'm autistic because I'm convincing them that I am??? These questions have been some of the hardest I've faced, and they're questions that are common among late-diagnosed and/or self-diagnosed autistics. People who are late-diagnosed with autism often express challenges feeling like a part of the autism community, which can cause quite a lot of distress. Often, the root of that anxiety is wondering whether we really are autistic. This worry can come from many sources, but some are particularly common: Family members and friends often question or dismiss the diagnosis.  Autism is still largely misunderstood, and shrouded in stigma. Sometimes, family members and friends respond in a way that they think is reassuring, but which is instead deeply invalidating. "You

Empathy and Autism

Today, I sat down to write about relationship conflicts in autism, and I realized that there was a topic I had to address before even considering tackling social challenges: empathy. I can't emphasize enough how misunderstood the experience of empathy in autism spectrum conditions has become. Let's start by making one thing very clear: People with autism can experience empathy. I'll say it again.  Autism does not equal a lack of empathy.  If you're not sure you understood me, go back a few sentences and repeat until you're confident you understand. Seriously. This isn't meant to be rude or harsh; it's just the most important lesson someone looking to become informed about autism can learn. And, sadly, even many clinicians don't seem to have been clued in yet. I'm not the only one who's been told by a doctor or psychologist, "You can't be on the spectrum, you seem to care about people!" I have friends who've sat thr

Religion on the Spectrum

Before I say a word on this topic, I want to specify that I do not speak for everyone on the spectrum. These are my personal perspectives, and while I hope that they'll provide insight for some, they're not intended to represent the views of anyone but myself. Within the autism community -- as anywhere else -- I've seen a lot of polarized views on religion. When the topic comes up, there are more than enough comments condemning anyone willing to believe something unproven by logic; I've even seen comments stating that you can't be religious if you're "really autistic," because apparently the autistic preference for logic precludes the possibility of any of us ever believing in or engaging with anything unproven. At the other extreme, for some, religion can become a special interest. The latter was my experience, which had both pros and cons -- largely depending on how I approached it. I'd like to speak a little to the experience of religion on th

Self Diagnosis in Autism

Autism is a rare field where -- at least within the autism community -- there's a general acceptance of self-diagnosis. I want to address why that is, and what it means for you or those you care about who choose to self diagnose. I want to start by saying: "Autistic" isn't a label that people give themselves for fun, or for perks. It doesn't help you get a job, no one sends you flowers, and unfortunately it comes with a lot of stigma and misunderstanding. Many autistic adults choose not to disclose their diagnosis to colleagues or family members because of the challenges that would follow, and some autistic adults will even turn down funding awards because having their name associated with the award might "out" them to family or colleagues who are less than accepting. If you know someone with autism who is open about it, this is a good moment to pause and appreciate the courage it takes to tell the world something about yourself that you know can be us

Getting Personal: Growing Up with Undiagnosed Autism

I don't fit the stereotypes for autism. When I was a baby, I didn't avoid eye contact, but rather would stare people down. I was extremely communicative, something my mother attributes to the fact that as soon as I was born she started a continued stream of conversation and refused to simplify to baby talk. I befriended my teachers, I had friends, I was involved in extracurricular activities, and I got excellent grades. Most of this, I attribute to music. When I was 3 years old, I started to study the violin. My teacher used the Suzuki method, which included group and private lessons every week. When you hand a three-year-old an instrument and round up an audience, you don't just tell them to go play; you spell out all of the expectations of a concert, what the musician's role is, why the audience is there. I effectively got an explicit introduction to social rules. I was taught to make my audience feel included by finding a moment to look at each person, and to l

Identifying as an Autistic Woman, and Why Write as One

Hello all. My name is Emily, I'm 26 years old, and I'm an autistic woman. I'm also a PhD student studying Cognitive and Behavioral Neuroscience. It seems like I spend an excessive amount of my time commenting on autism forums, so I decided to put all my thoughts in one place for those who may want to find them. Sometimes I'll share my personal experiences, sometimes I'll share anecdotes I've encountered in autism forums/communities, sometimes I'll share what I know of the current research, and sometimes I'll do some combination of the above. You'll have to forgive me for a bit of a sloppy start; there's so much to say and I've never been good at being concise, so instead I'm going to try to share it all and hope that I can be organized enough to still make sense. So, I mentioned that I'm an autistic woman. Let's focus on that. Autism is so misunderstood in so many ways, but I'm lucky enough (sorry, that's sarcasm) to com