How to Really Support Autism

My mornings are pretty consistent – I wake up for the several alarms I’ve set neurotically, hit the off button, and browse on my phone to stay awake while snagging a few more minutes nestled in my comfy warm bed. While checking Twitter this morning to see if ODAAT was finally picked up by a network (fingers crossed), I saw so many posts for World Autism Awareness Day. So many puzzle pieces and #LightItUpBlue, so little time. You might also know that April happens to be designated National Autism Awareness Month. As an autistic woman myself, I felt compelled to set the record straight about some things that I take issue with when mostly well-intentioned people try to support autism as a cause. It’s not all bad, but there’s definitely some bad vibes that April gives to #actuallyautistic people like myself.

Language Matters

When you’re drafting a post to social media, you might spend some time thinking about hashtags, which filter, and definitely if you’re anything like me which gif to use (still not solid on how that’s actually pronounced). So why wouldn’t you spend some time thinking about the language you use on social media? I can’t tell you how many times in April I see people using language that’s often considered hurtful to both the autism and disability communities. Phrasing like handicapable, differently-abled, and special needs or calling people with disabilities inspirations or courageous. My biggest issue is with what is commonly referenced as inspiration porn. I recently discovered ABC’s Speechless, which is an amazing show that actually features genuine disability representation and needs to be renewed ASAP!! They hit the nail on the head in one of their episodes as they explained what inspiration porn is.

No Assembly Required

The imagery associated with autism of the puzzle piece may appear innocent, but it carries an implied meaning that can be hurtful to autistics like me. Think about the last time you tried putting together a puzzle. You had to look at the box to see if the pattern was even remotely close, scavenge for the right piece for a particular spot, and sometimes slam it into place before you realize that there was a missing piece. People are not puzzles!!! The analogy of a puzzle piece – especially when paired with that saying “until all the pieces fit” – implies that people on the autism spectrum need to be fixed or that something is wrong with us. The sooner we ditch the puzzle piece, the sooner we can change the narrative of autism as being something to fix when really it’s society that could benefit from changes.

Blue-Washing

Every April brings a wave of blue everywhere, which seems cheery enough, but again there’s an aspect that might not even cross your mind. When you think of the color blue, there are several associations you might make from raindrops to a beautiful clear sky. Of course, there’s also the association seen at many gender reveal parties with boys traditionally being represented with the color blue. When attached to something like autism, it wipes out the existence of other autistic people who identify as female or another gender identity. In 2019, we need to do better in not only recognizing but supporting all autistic people regardless of how they identify in terms of gender, race, and sexual orientation.

Ditching Autism Speaks

Have you ever had that one acquaintance that’s always saying something really messed up? Enter Autism Speaks. For many well-intentioned people, Autism Speaks is the organization that you might give a donation to in April, but peel back the curtain and see the horrible ethos of the organization which ascribes to what is referred to as the medical model of disability. It essentially aims to fix or cure people with disabilities including autistics through medicine. In the case of Autism Speaks, their goals are made into reality with research for a cure and support of prenatal testing which aligns itself with other modern eugenics practices. Let me say emphatically: I and fellow autistics like myself – we are not broken and we don’t need to be cured!! They are an organization that not only fails to represent the support needs of autistics directly but is perfectly okay at the prospect of erasing autism and autistics like myself off the map. This op-ed published four years ago from The New York Times written from a parent’s perspective, while dated still provides a great perspective of the issue.

 

The Autistic Self Advocacy Network (ASAN) also gives some thoughts in a prepared pamphlet on the ills of Autism Speaks’ practices as well as providing some helpful guidance on where to donate instead that will actually benefit people on the autism spectrum and not an organization participating in mass character assassination of autistic people. I leave you with this thread from NYT YA author Marieke Nijkamp that pretty much sums up my feelings to a T. I hope you enjoy the rest of your #WorldAutismAcceptanceDay and as always, I’d love to hear your thoughts!!

 
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All the Education Money Can Buy

I vividly remember my experience preparing for college during eleventh grade. My basketball-loving high school counselor Mr. Brousseau pointed me to the PSAT as a way to prepare for the big one: the SATs. I had been practicing with the College Board’s online practice tests whenever I could. I remember the anxiety I experienced coming in for the PSAT and that wasn’t even the real thing. My mom dropped me off at my high school early that Saturday morning and I nervously sat myself down at an open desk in one of the math classrooms with at least 10 other students in my high school. This was one of the first tests in a long time that I didn’t have accommodations for. I honestly don’t know which was more nerve wracking: the people around me or the test that was about to be on my desk. I had prepared my usual ziplock bag of test supplies – several pencils and a Texas Instruments calculator. Soon the proctor distributed the practice tests and I was a fearful matador in front of my frightening bull that was this practice SAT test. My nerves were frantic as my skin felt like ants marching underneath. I tried breathing to relax, but I quickly faced a crushing blow when the batteries on my calculator died. As someone who couldn’t do any math to save my life, I felt utterly helpless and unsure of how to proceed. My test anxiety was getting the better of me and I felt like I was watching my college future slipping away. I left the test that Saturday feeling beyond defeated and disappointed in myself.

That disappointment faded into a fiery sense of stubborn determination when I sat down to take the actual SAT test in the spring. It also helped tremendously that I was able to take the test with accommodations for time, and a separate and quiet location. I sat down again with my ziplock baggie of pencils, my Texas Instruments calculator and an entire package of batteries (I wasn’t playing that game again). I was still absolutely terrified of the test, but somehow, I felt less frazzled than last time. Each time I exhaled, it felt like I was shedding the weight of my inner buried anxieties, which I had placed on a single test (which was absolutely unfair to do to myself). In the end, I was right and I did really well. The irony is that I didn’t end up needing to take it because I started at a community college, but I learned a lot about myself from the experience.

You see, before the PSAT/SAT one-two punch, I wasn’t really serious about going to college. It was this thing that all of my teachers and guidance counselors had an opinion about and I was kind of flirting with it in a noncommittal way. Taking the test taught me through a so-called failed practice test that yes, this was something I wanted and because I let it slip through my fingers, I was going to fight like hell to get that chance.

When I read the news about the FBI uncovering a college admissions scam with fraudulent testing, I felt so many emotions reading the story. Mostly anger and frustration as I saw these students were falsely and unethically obtaining testing accommodations for the ACT and SAT under the guise of having learning disabilities. As an autistic student now working on grad school, I consider myself extremely lucky to have had the accommodations I’ve needed during my high school and college career so far because I know that doesn’t always happen. I took the SAT with accommodations of extended time and a separate and quiet location which helped me tremendously so when I read about students without disabilities falsifying having learning disabilities to gain access to accommodations in order to buy and cheat their way into college with so-called good test scores, I felt angry that people who have busted their butts and taken the SAT the right way may have been cheated out of an education at their preferred colleges because some privileged white kids made their own lane and fraudulently bought their way into college. Simply put, the people who took and didn’t cheat were cheated – whether or not they have disabilities. If I’m honest, it’s especially infuriating when you are familiar with some of the statistics for post-secondary education like I have become from one of my disability studies courses this semester.

I literally just wrote a paper on the statistical divide in college enrollment, which for a brief review, revealed a tremendous gap between the enrollment rates for students with disabilities and those without. Add to that factors like economic and racial privilege that gets stacked against students with disabilities who are already disadvantaged when it comes to getting a college education. The stats I used for my paper may have been 10 years old, but a 2011-2012 U.S. Department of Education study shows that only 11% of the college population is comprised of students with disabilities.

I also felt incredibly sad for the many students who like me are actually disabled and set out to attend college the right way and had been denied in order to make room for these people who cheated and scammed the system that’s already rigged against individuals with disabilities. This whole story brings up a lot of feelings for me in regard to how people with disabilities are treated. People without disabilities are taking advantage of the resources that so many people with disabilities have had to fight for their entire lives.

I couldn’t help but think of my experience obtaining accommodations which actually hasn’t been smooth sailing. I’ve had to fight to get the support that I need throughout my educational career. In first grade, I was held back a year in order to obtain special education support services, before being formally diagnosed as autistic. I literally had to repeat a grade to get the services I needed, and these parents simply paid for access?

 In college, fighting for support was often an uphill battle. Trying to advocate for yourself and the assistance you need, on top of all the other college priorities is a stress, and a distraction. I’ve had professors who have denied me my accommodations such as a math education class when I was denied use of my calculator despite it being on my approved accommodations. While in many senses, I was lucky to have had relatively medium issues obtaining accommodations – other students with disabilities aren’t always so lucky.

Having able bodied students coached into claiming disabilities to get accommodations they don’t need is a slap in the face of disability activists who throughout history have worked hard in the fight to gain equal rights and fight unnecessary barriers placed by an ableist society that discriminates and constantly stigmatizes people with disabilities.

This behavior sets us back. People fight for accessibility which doesn’t always come easy. This whole scandal is insulting. What happens now? Will these parents face consequences for their actions? Will the colleges do anything to ensure this behavior ever stops or will it just continue on? Because let’s be real: this isn’t new, it’s just an instance in which people were actually caught. What will become of the degrees these students received? Do the students get off with no consequences? Because weren’t they adults who could have stood up and said no thanks, I’d rather get by on my OWN Merits?!?

Perhaps this outrageous story can be an opportunity for a dialogue on the realities of education and disability.