Autism acceptance for 30 days and every day

Michael Lopez, a founding member of the Texas Democrats with Disabilities Official Discussion Group on Facebook, published a series of daily posts for Autism Acceptance Month in April 2019. With Michael’s permission, I am republishing the series here.

Michael’s bio, in his own words: “I was diagnosed with Asperger’s Syndrome as an adult after I had been suspended from two colleges due to bad grades. Since diagnosis I have earned an AS and a BA. I live in San Antonio, Texas. My special interest is roller coasters and theme parks. I was born in 1983.”

Thank you, Michael, for teaching me. For teaching all of us!

Day 1. Many people who are “aware” of Autism, still have misconceptions about how it affects those of us who are #ActuallyAutistic. This, IMO, is due to a focus on “autistic behaviors” and not on the underlying reason behind said behavior.

Day 2. Today is World Autism Awareness Day. However, for those of us who are affected by it, we are aware of Autism 365 days a year (366 during leap years). What many of us now feel we need is acceptance of our neurological differences. Part of this, IMO, is moving away from medical model of disability (something is wrong and needs to be fixed), to the social model of disability (the disability is a disability due to a lack of accommodation for the difference).

Day 3. I strongly relate to the X-Men movie series because, to me, the way the mutants in their society are treated by their society is how our society treats autistics and those with other differences. We’re isolated/shunned because we are different.

Day 4. Many people in the autistic community hate the single blue puzzle piece, including myself, because of its affiliation with Autism Speaks. Some dislike anything related to a puzzle theme because of negative beginnings of the symbol. I personally like the multicolored puzzle pieces because, to me, they symbolize the fact that we are all unique and, like the pieces of a jigsaw puzzle, all are vital to the whole puzzle/society. Some want to have a completely different symbol to represent us, a rainbow infinity. My two biggest concerns about this is first, many people already associate rainbow ANYTHING with the LGBT community, so I think that could be a point of confusion. My second concern is that it is very unknown. I’ve only seen it used by a very small portion of the autistic community. I think we should reclaim the multicolored puzzle pieces, in a positive way, as our own.

Day 5. Another thing to keep in mind is that, in my experience, many autistic people can be perfectionists. Our mindset can be if it isn’t perfect, it isn’t good enough. Figuring out what is good enough can be a challenge for us. We may not want to continue an activity if we perceive ourselves as not being good enough at it (not perfect). One aspect this COULD effect is employment. We could be harder on ourselves than our coworkers or bosses are on us. Others could also see us as holding others to too high a standard.

Day 6. There is a stereotype that autistics lack empathy. This is completely untrue. We may have a hard time reading the nonverbal clues for what the other person feels, or we may have a hard time EXPRESSING the emotions, but we certainly FEEL them, and understand how something happening to someone else would make us feel if it happened to us. In fact some autistics say that they feel the emotions TOO strongly, and they are therefore overwhelming. I think this stereotype leads to unwarranted fear of us.

Day 7. Some may have noticed that I have been using identity-first language (Autistic), instead of the “politically correct” person-first language (person with Autism). This is because I (and many others who prefer it) strongly feel that Autism/Asperger’s is a fundamental part of who we are as a person. Most other ways people identify themselves (race, religion, national identity, gender, sexual orientation) are discussed using identity-first language. Those who prefer person-first language generally feel that they are more than their diagnosis. Both points of view are valid, so please let each individual choose how to describe themselves and their diagnosis.

Day 8. Stimming, or self-stimulation, is generally defined as repetitive actions or sounds that don’t appear to serve a purpose. Examples of this include rocking and hand flapping. As an autistic I can say that stimming can be extremely functional for us. For example we may focus on the repetitiveness to distract ourselves from a situation that may be overwhelming for us. It may also be a coping mechanism for fear. Other people stim when they are excited or happy. And yet, despite the functionality and the fact that it is usually harmless to ourselves and others, stimming is discouraged by nonautistics. Additionally, when nonautistics do similar things it is seen as just fidgeting.

Day 9. One area that I think is very important, but is very underdiscussed by nonautistic “Autism experts,” is the fact that almost all of the autistics that I know have different sensory needs than most people. This, in my opinion, is where the stereotype of autistics not wanting to be touched comes from. For some this is true. Other autistics love being touched. Still, for others, it depends on the type of touch. Some autistics love gentle light touch, but can’t stand heavy deep pressure touch, while others are the opposite. I can’t stand spicy food; even mild salsa is too spicy for me. I guess I’m hypersensitive to the chemical capsaicin, which is what makes chilis spicy. Another sensory issue I have is I can’t stand foamy textures, such as meringue or whipped cream. Finally, some autistics are generally sensory seekers and NEED extra sensory stimulation (which I am as evidenced by my love for riding roller coasters), while others are generally sensory avoiders and can’t tolerate environments of heavy stimulation. It is possible to be sensory seeking in one sense but sensory avoiding in another sense.

Day 10. In addition to this being Autism awareness month, this time of year, as the school year gets ready to start winding down, there always seems to be an influx of #InspirationPorn. These are often “feel good” stories, but I don’t like what they do at all. Examples of this include stories where the disability is not relevant to the story, such as “person with (disability reference) does stunning rendition of (song),” when MOST disabilities have nothing to do with musical talent, or “overcoming” a disability to complete something already challenging, such as a recent story about someone becoming the first openly autistic lawyer in a state by passing the bar exam. The type of story I hate the most, though, is when the story is about someone (usually a star or someone popular) doing something “nice” to an outcast (usually there is a disability reference), such as eating lunch with them, or inviting them to a dance. These stories irritate me because why should we put someone on a proverbial pedestal for treating us like everyone else.

Day 11. People often say that autistics are black-and-white, rigid thinkers. It is true that many of us find that comfortable because it brings some order to the stressful, chaotic world around us, but if a social norm doesn’t make sense many of us are more likely going to ignore that. We are, generally, logical thinkers, which is probably why the world is so stressful for us. Many people are not logical.

Day 12. One area many autistic people struggle with is nonverbal communication, which is at least 2/3 of human communication. This could include tone of voice, facial expressions, other body language, etc. It isn’t that we CAN’T interpret these, we are just often much slower at it and it requires a LOT of effort on our part, instead of it coming relatively easy to us. By the time we figure out what the nonverbal communication meant, the conversation has already moved on leaving us struggling to catch up. We may also put more emphasis on what someone says than HOW they say it. Bottom line: say what you mean, and give us time to fully process what you mean nonverbally.

Day 13. Some autistics have additional diagnosis along with Autism, called comorbid conditions. These include Sensory Processing Disorder, ADD/ADHD, Bipolar, Depression, anxiety, and others. In addition to having Asperger’s, I am Hard of Hearing and have tinnitus (ringing in the ears). I have also heard that there is higher frequency of epilepsy for autistics, compared to nonautistics.

Day 14. Another thing that many autistics have, including me, even though I haven’t been officially diagnosed with it, is what is called “face blindness” (the medical term is prosopagnosia). This is the inability to remember individual faces, so many faces look similar to each other. When I was in school, it took me most of the semester to even learn SOME of my classmates’ names and faces. This can create the misunderstanding of us not trying to remember.

Day 15. One way I have heard some autistics try to explain when a meltdown or shutdown will happen is “Spoon Theory.” I have seen tokens used interchangeably with spoons. I have also seen it used by chronic pain patients. The theory goes: everyone starts the day with the same number of spoons. Each activity costs, or occasionally replenishes spoons. For many autistics the amount of spoons something costs may be more than what that action costs for nonautistics. If the spoons run out before the end of the day, meltdown/shutdown is possible.

Day 16. Special interests. Something that almost all of us autistics have in common, but what that special interest is can be extremely diverse. My most consistent one is roller coasters and theme parks. I have a small ride parts collection, event lanyards, amusement park shirts, among other things. Special interests help keep us happy. Unless it is illegal, or dangerous in the wrong conditions, I think special interests should be encouraged. I don’t understand why special interests are not seen the same way hobbies of nonautistics are.

Day 17. One thing that many nonautistics seem to find surprising is that many autistics do NOT want a “cure.” This is because many of us consider Autism to be an integral part of who we are as a person. I would not be me without Asperger’s. The idea of a “cure” is offensive to us because that means we are not accepted for being ourselves.

Day 18. Intersectionality. The fight for rights of other historically oppressed demographics, in my opinion, is just as important as ones that are autistic centered. Many of us are members of multiple historically oppressed demographics (women, minority ethnicity, LGBT, other disabilities, etc). It is important that we include other groups in the discussion of what to raise our voices about, and learn from their perspective. It is equally important for other groups to actively involve us in the planning of their events so that autistics, and other disabled, can fully participate in other causes.

Day 19. I see several similarities between autistic culture and Deaf culture. Both are perceived as being brutally honest. Deaf people don’t see themselves as disabled. Neither do many autistics, from the standpoint of disabled = something about us needs to be fixed (“different not less”).

Day 20. Unfortunately, many autistics experience bullying throughout their life. In my opinion, the challenges we have with nonverbal communication makes us an easier target because we might not be aware that we are being set up for something. Unfortunately, this bullying can also mean developing a lack of trust. It is sometimes hard to figure out: “Is this person being nice because they actually like me, or is there an ulterior motive?”

Day 21. When we need or request accommodation the burden often falls on us to prove we need the accommodation. In social situations, we are the ones who are forced to change, or do most of the adjustment, rather than people meeting us somewhere in the middle, yet we are the ones who are perceived as being unable to adjust.

Day 22. Alternative/adaptive communication, such as text to speech or pictures, can be extremely helpful for those who are at times nonverbal or semiverbal. Unfortunately, in my opinion, our society puts an emphasis on verbal communication as a sign of intelligence. Treat other communication methods with the same value and validity as speaking.

Day 23. Society tells us to “be yourself”. However, for many of us autistics, but not exclusive to autistics, being ourselves leads to us being shunned and isolated because our “being ourselves” is also seen as inappropriate, even if there is no harm coming from our behavior. Society says: Be Yourself* *unless being yourself is outside of largely arbitrarily defined, unspoken rules of what is appropriate. Otherwise mask your true self to “fit in” even though this can cause problems later on. At least that is what society seems to be like.

Day 24. A couple of years old, but still relevant. One common thread for many autistics is a lack of friends. The stereotype is often that we don’t want friends. This stereotype is mostly untrue. In my experience many autistics want friends, but struggle with developing, and sometimes maintaining friendships, especially in a “typical” way. The various types of friends we do have varies from person to person. I have several more casual friends, but struggle developing deeper, longer-lasting friendships, and no experience with romantic ones. Other autistics are the opposite, fewer friends but ALL of them are deep and close. Many friendships seem to form related to our special interests.

Day 25. With the growing measles outbreak here in America it has to be said. Vaccines do NOT cause Autism. That initial study has been disproven many times. In fact, the person who did that study lost his medical license. The very idea of someone not wanting to vaccinate their kids because they might become autistic is offensive to me because those people are implying that I am better off dead, or potentially otherwise severely disabled, than autistic.

Day 26. Many autistics are trying to do away with functionality labels. This is because functionality is not a linear spectrum, but rather a nonlinear one, with everyone having their own strengths and weaknesses in different aspects.

Day 27. One thing that I hate is when people, autistic or not, say historical figures were probably autistic when the diagnosis was not even around when they were living. Or when people speculate that certain celebrities or famous people are autistic. Unless someone self-discloses their diagnosis, it is nobody’s business whether or not someone has any diagnosis. Even after self-disclosure that info should be private unless the person says to share the diagnosis with others.

Day 28. Something that bothers me is that many times after mass shootings there is speculation about the perpetrator being autistic, especially if they had earlier been seen as a “loner,” etc. This leads some people to think autistic = dangerous. Autistics, as far as I know, are no more prone to violence than the rest of the population. In fact, I have heard that we (autistics) are more likely to be a VICTIM of violence than others.

Day 29. Many autistics are either unemployed or underemployed. This can be for many different reasons. Interviews are often challenging, both face-to-face and phone (“appropriate” eye contact, tone of voice, quick thinking on the fly, etc). Our differing sensory needs may make it harder to find or maintain employment in certain environments. Miscommunication and misunderstanding within the work environment itself (management, co-workers, job tasks) presents additional challenges. Additionally others have said that they want more hours of work, but that would make them ineligible for some services that make medicine they need affordable to them.

Day 30. As Autism acceptance month comes to an end officially, remember for those of us who are on the spectrum, and our true allies, the need for #AutismAcceptance is every day of the year. If you are ever unsure about Autism, our needs, how to become a better advocate/ally, the best thing to do is to ask #ActuallyAutistic people, and actually listen to them.

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