April is Autism Awareness month which has gotten a lot of publicity in the past few years. I have seen many in the BJJ community hold various fundraisers for autism-related nonprofits and organizations. However, I have also seen a lot of misinformation and misguided goodwill towards the autistic community. As someone on the spectrum, I felt obligated to weigh in. This is not something I have told many people, and I was even reluctant to attach my name to this piece because of the stigma associated with being on the spectrum and insensitive reactions I’ve had from others who I have told.
I am in my late 20s and have Asperger Syndrome. I was diagnosed around the age of ten, but showed symptoms from the time I was around four. My parents sent me to several doctors, psychologists, and specialists to figure out what was going on as I threw tantrums, was unable to express my feelings, had limited speaking skills, and overreacted to various lights, sounds, and other stimuli. My inability to express myself made socializing with my peers very difficult and it was quite some time before I made real friends. The main psychologist I saw told my parents that because of my limitations and the severity of my behavior I would never be able to live on my own.
My parents refused to accept this. While no one had yet put a label on my behaviors, I was also diagnosed with learning disabilities. For three years, I attended a school for kids with learning disabilities that also provided support for behavioral issues. The school provided occupational/physical therapy for my coordination issues, speech and language therapy, and small classroom sizes with specialized teachers. After spending kindergarten through second grade there, the staff determined that I was ready to be “mainstreamed” in to public schools. Since then, I have occasionally seen psychologists and therapists to help me when past issues resurface.
Additionally, my parents pushed me to develop social skills, channel my eccentricities in to positive outlets, and helped teach me the skills needed to live independently. The efforts of my parents, in my opinion, were the most critical in my development; my mom sat with me just about every day to help me with my homework and was always on my case about not being clumsy or rude. Of course, no kid likes being told what to do, but in retrospect, it was immensely helpful. My parents, especially my mom, were very loving in the way they guided me and rarely got mad at me.
Fast forward twenty years. I have a college and master’s degree. I have a job and live on my own (okay, I have two roommates, but you get it). I have plenty of hobbies, a purple belt in jiu jitsu, a great group of friends, and a pretty satisfying life overall.
So why do so many people act like autism is a death sentence?
I am not someone to be “cured”. I am not an affliction; I am more than my diagnosis. Asperger’s shapes part of me, but it does not define all of me, and it does not weigh me down.
Let me explain a few of my symptoms and how they affect my life.
Touch Sensitivity: Certain fabrics bother me. Not like “oh, this wool sweater is kind of itchy”; more like “oh my God I am internally screaming because I cannot stand the sensation of this fabric I want to shred it to pieces and get in to sweats.” It is impossible to describe the discomfort I feel with certain fabrics.
Sensory Stimuli: I am almost certain one of those EDM festivals would send me in to complete overload and I would have a public meltdown. Until the past couple of years, I could not even go clothes shopping without getting overwhelmed by the patterns and colors. Nightclubs are a nightmare; I went to them in college to “fit in” and could only do so if I was drunk, as alcohol dulled my senses. I stay away from certain concerts and carefully plan what social events I attend; if I attend too many in too short of a timeframe, I will feel overwhelmed and overstimulated. I have practiced controlled breathing to deal with these situations, but I will remove myself from the scenario if necessary.
Extremely Logical/Concrete Understanding of The World And Mind Blindness: I often take things literally and do not understand sarcasm. I find myself asking people “are you being facetious?” I am obsessed with researching and learning new facts. I tend to use big words in conversation, which makes me sound pretentious. Learning new words that can be used to describe things in a more detailed/specific/context-appropriate manner help me understand new concepts. My “mind blindness” means that I sometimes have a hard time understanding why anyone would not analyze the same situation the way I would, and often assume people know what I know. To combat this, I research the variety of viewpoints on an issue before responding to someone’s perspective to see how others might see it.
Lack of Coordination: I am very clumsy! I think I trip over my own feet about once every 70 steps. I really need to think when I walk, drive, or do any physical activity. For example, it took me five years of jiu jitsu (I’ve been training for a little over 7 years as of this post) before I became comfortable with standing guard passes. Even if the person has no hooks, I often felt like I was going to fall over if I tried a standing pass. Torreando and X passes were out of the question for a long time because I would trip over my own feet. I have a tendency to do certain tasks very clumsily as well; I have ripped many socks by putting them on too fast.
Special Interests: This is one of the more well-known and common symptoms associated with Asperger Syndrome. I get obsessed with various topics. My old obsession with dinosaurs recently came about again. But I’ve been obsessive about jiu jitsu (come on… what practitioner hasn’t been at some point?), wild animals, Native American culture, Buffy the Vampire Slayer, the ongoing controversy about the Brontosaurus/Apatosaurus, dogs, industrial design, biomedical engineering, diseases, the structure and design of cities, mass transit, the ins and outs of every organ system in the human body, trains, and more. This sometimes makes socializing difficult- turns out that it is NOT actually appropriate to introduce yourself to someone by stating the wingspan of the harpy eagle! I am more careful about tailoring my conversation to the crowd at hand. For example, if I’m at a house party or social event, I’ll introduce myself to someone and ask how they know the host; this sets a common ground and starts a string of stories and memories from both parties.. Almost every social skill I have was explicitly taught to me or researched/observed by me. While jiu jitsu didn’t teach me any specific social skills, most jiu jitsu schools have people from a wide range of backgrounds and occupations. You are destined to observe behaviors and actions from someone who doesn’t look/dress/act/talk like you. Also, at any healthy gym, there is a mutual respect between the students; I find this mutual respect makes social interactions much easier. I have met many people through jiu jitsu I would have not met otherwise. I train with teachers, actors, scientists, businessmen, police officers, and more; many of these occupations don’t intersect with my line of work as a data analyst.
So basically, I must organize social events, be careful about the clothes I buy, think hard before I speak, and make sure I don’t go on tangents about my “special interests”. Does that sound like a terrible life to you?
And this brings me to the problem of many charities and nonprofits that claim to “support” autism.
They want to “cure” people on the spectrum. They often do not seek to empathize with autistic folks or even have anyone on the spectrum in administrative positions or board of directors. These organizations paint autism as a disease where those who are affected cannot control their behavior, have no empathy, and are always depressed. The biggest offender is the organization Autism Speaks, which is popular and well-funded, but has no people on the spectrum on their board, seeks to “cure” autism, and most of their funds go towards events and not actually helping autistic people. Additionally, they largely cater to the parents of autistic children instead of autistic people themselves; I understand that parents need support, but they make parents seem like they are the “real victims” of autism; I have heard the phrase “parents of autistic children are the real victims” more times than I’d like to remember. I am not the only person who feels this way. If you look up the hashtag “#ActuallyAutistic” on Twitter, you will see that many people on the spectrum who express similar feelings.
I don’t want to be cured, and many people on the spectrum have expressed that they don’t want to be cured either. What many on the spectrum DO want is empathy and understanding from the public. Understand that it’s not a death sentence; we are simply programmed differently than others. We will learn the necessary techniques to deal with these issues, just as everyone learns to deal with other things that happen in their lives.
Another aspect of autism awareness I take issue with is when parents post pictures or videos of their kids on the spectrum to “inspire” others.. For example, there was a story some years ago where a mother posted a public message on a Facebook community page; the boy ended up receiving around 20,000 cards for his fifteenth birthday. Even in my most unpopular years, I would have been extremely embarrassed if my mom had put out a public call for birthday cards, and even if I wasn’t embarrassed at the time, I’d be mortified as an adult. Showcasing your kid like that for attention infantilizes them and largely serves so that the general public can have that brief “feel good” moment. The media has sold out children on the spectrum for too long and it hurts more than it helps. It reduces us to horror stories, pity parties, and feel-good anecdotes. If you want to help other parents of kids on the spectrum who might be struggling in helping their kid(s) reach their potential, consider joining a network of parents and reach out to the appropriate person. My parents knew that I would probably lead a different life than most of my peers, but they do not view my life through my limitations. For example, instead of treating my special interests as eccentric, if they meet someone who works in the field of one of my past or current interests, they’ll say “oh, you should talk to my daughter, she loves that subject!” To them, my Aspergers-induced habits, provided they do not hurt anyone, are not something that should be cured or defeated; these habits are just a few of the million traits that define me.
Temple Grandin said it best: we are “different, not less.” Temple Grandin is an autistic woman who is a pioneering figure in the field of livestock handling. She leveraged her ability to “think in pictures” in such detail that she could actually imagine what the cows in livestock facilities were feeling. By using a camera and going on all fours through a cattle chute, Temple was able to figure out what things scared the cattle. This is because her hypersensitivity was on the same wavelength as the cattle; the same things that bothered them also bothered her. Temple describes her ability to “think in pictures”. Like me, she was also told that she would never live independently and went to a specialized school. However, one of her teachers noticed her brilliance and worked directly with her on leveraging her strengths appropriately. She was certainly different than all the kids around her, but she was not “less” than them. Additionally, her mom worked tirelessly on her behalf as an advocate at a time when autism was barely recognized. If you want to learn more about Temple, you should check out some of her books and watch the 2010 HBO biopic “Temple Grandin.”
My parents rarely speak of me being a difficult child, even though I clearly was at times. They don’t showcase me as an “Aspergers success story” and they don’t even talk about me being on the spectrum much in public or private. They never added the qualifier “and she is on the spectrum!” whenever they told others about my accomplishments. They are not “lighting it up blue” this month because they do not think of me as “their daughter with Aspergers”; I am simply their middle daughter. I am the combination of an infinite array of traits and interests. My parents love me for who I am flaws and all, through the things I can and can’t help, as all parents should.
I hope I cleared up some misconceptions about what being on the spectrum is and isn’t, and how people can be more effective allies and advocates. The bigotry of low expectations, commodifying children as “success stories”, and isolating people on the spectrum from the discussion is a dangerous combination. I am very blessed to have such a loving, supportive family and parents who guided me every step of the way.