Allow me to introduce you to my mother:
Mom is a strong, beautiful woman full of forgiveness, grace, and empathy. She wants her firstborn to live a happy, prosperous life by using her God-given talents to help change the world. We applaud and salute my Mama for doing everything she can to get me help, from IEP meetings with my teachers during my public school days, to counseling appointments and getting me on my Happy Pills. For her, a special place in Heaven awaits as a reward for having to raise me.
And then there are the Autism Warrior Moms. (I’m going to call them AWM for short.) I like to put these mothers in the same category I put Jenny McCarthy in: they might claim they’re trying to raise awareness for Autism, but they instead talk about their child as if they’re a burden and not a blessing. They are by far the loudest voices in the Autism community because of the fact that controversy speaks louder than the Truth.
Fortunately, to my knowledge, I do not personally know any individuals or parents that fall under the AWM category. But, I do see countless, well-meaning individuals approaching Autism awareness in a way that Actually Autistic individuals feel is disrespectful or counteractive.
However, when it comes from a place of love, I truly believe that most parents are doing the very best they can with the research they have done. With all the misinformation that exists, what can you believe in? What do you trust? Who do you trust? You likely get advice from Autism mommy groups and your good friends who also have neurodivergent children. And that’s not a bad thing, until you start to ignore the most important voice of them all: the Autistic person themself.
WHILE I OBVIOUSLY cannot speak on behalf of every Autistic person, here is my list of how you ─ the hypothetical neurotypical ─ can combat misinformation and spread the Truth.
1) Remember that Autism is called AUTISM SPECTRUM DISORDER.
Yes, I’m going to act a lot differently than your friend or relative who has Autism. No, that doesn’t validate my experiences or their experiences as Autistic people. It just means that Autism Spectrum Disorder is beautiful, complex, and diverse because humans are beautiful, complex, and diverse.
2) Avoid using terms involving the word FUNCTIONING.
What determines me to be high-functioning? Who are you comparing me to ─ the individuals on the spectrum who don’t speak? Who appear to have Autism more obviously in the eyes of neurotypicals?
It takes a great amount of effort for me to have gotten to a place where I am able to mask my Autism just enough to the point where strangers and passerby’s don’t expect something to be “wrong” with me. (Sidenote: It’s just Autism, not the Plague. There is nothing wrong with me.) if you get to know me on an intimate, personable level, you’ll find that I have a lot of difficulty with my executive functioning skills.
I do not consider Asperger’s Syndrome to be “mild” Autism. There is nothing mild about my Autism! I have my skills and talents, but I also have my shortcomings and struggles ─ just like every human being does. Please respect this by deleting the term functioning from your Autism vocabulary list.
3) Believe us ─ don’t speak louder than us.
All too often, I hear neurotypical (non autistic) allies say things like, “actually, you say ‘person with Autism’” straight to an Autistic person’s face. There are reasons why we say what we say and do what we do ─ you just have to listen to us.
“Autistic person” refers to our Autism as an identity, which is exactly what Autism is ─ a different way of the brain processing. Person with Autism makes it sound like Autism is our baggage we carry around ─ and the last time I checked, my Autism is who I am. I love being Autistic; if I wasn’t Autistic, I wouldn’t be Morgan.
Additionally, you might find that some of us may complain about something being too loud or bright. Autism brings to each person a unique case of sensory issues. For me, I hate the sound of infants whining, fireworks, and loud cars or motorcycles. Other sensitivities in other Autistic individuals can include the touch of certain fabrics, hugging, bright lights (like those at a doctor’s office), and food.
If we say something is too noisy or too uncomfortable, please listen to us. It truly is the biggest sign of respect when you don’t say something or force someone to do something they are not comfortable with, such as making them eat their vegetables. (Note: A well balanced diet is important, but if someone doesn’t like broccoli, they don’t have to eat broccoli.)
4) The puzzle piece has controversial origins. Please don’t use it.
The puzzle piece ─ especially a blue puzzle piece ─ and the puzzle piece “Autism Awareness” ribbon, all have an extremely controversial origin story. First used by the National Autistic Society in 1963, and made popular by anti-Autism group Autism Speaks, the original meaning of the puzzle piece is as follows:
“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.” ─ Helen Allison
Autistic people were seen as having a handicap rather than a mental disorder ─ a different way of their brain processing and working. Autism Speaks still chooses to use the puzzle piece as their neurotypical outlook on Autism Spectrum Disorder, which speaks multitudes for the mindset of the organization. (Read on to discover more reasons why NOT to support Autism Speaks.)
So whenever I see primary colored puzzle piece ribbons and childish imagery, I cringe. I’m an adult.
The preferred symbol we Autistic people use is the rainbow infinity symbol. To us, it represents the beautiful diversity that Autism is.
5) Autism Awareness culture, in general, is extremely toxic towards the Autistic people it is trying to “help.” Likewise, Autism Speaks does not speak for Actually Autistic people.
Let’s start with Autism Speaks. Ran by neurotypical individuals (neurotypical meaning that they do not have any mental disorders themselves), Autism Speaks allegedly considers themselves the largest Autism advocacy group in the United States. However, with only 1.6% of its funding going directly towards autistic individuals ─ along with them having one meager Autistic person on its board of directors ─ it is impossible to say where the advocacy work towards the Autistic individuals actually happens.
The saying “NOTHING ABOUT US WITHOUT US” is used to emphasize the fact that you cannot learn about Autism unless you talk to an Autistic person about their experiences. Without anyone represented at the top of the organization, the Actually Autistic community hates Autism Speaks, believing it to be a gigantic cash grab at our expense. What’s even worse is that Autism Speaks primary goal is to develop a prenatal test to allow the parents to decide whether or not they want to give birth to an Autistic baby. In my eyes, that’s the textbook definition of eugenics.
Instead of shoveling money toward an ableist, anti-Autism group, donate money for Autism Self Advocacy Network. This is a group that is run by the Autistic people and for the Autistic people, so your money is going directly to help Autistic people out, rather than to an organization that spreads misinformation and advocates against our wellness as Autistic individuals.
Additionally, my fellow autistic friend made me aware of a trend that’s been going around where blue Halloween buckets are allegedly being used to silently state that an individual is Autistic. One of the messages reads:
AWARENESS: Trick or treat…the BLUE BUCKET…if you see someone who appears to be an adult dressed up to trick-or-treat this year carrying this blue bucket, they’re probably autistic. While they may have the body of a 21 year old, they love getting dressed up for Halloween. So when you see the blue bucket share a piece of candy. Spread awareness!
Me and all my other 20-something-year-old Autistic persons are not “a child trapped in an adult’s body.” We are not a 22-year-old with the maturity of someone less than half my age. No 22-year-old is; we’re twenty-two years old.
If you ever have a question about something that’s gone viral, just ask one of us to explain what we think of it, and respect us for what we say. Sometimes, the trend is inspiration porn ─ like those videos of a “person with getting asked to prom.” Uh, last time I checked, my high school boyfriend wasn’t some national hero for asking me to prom ─ he was just asking his girlfriend out to prom. However, a viral video that I loved was when an Autistic boy graduated high school and the audience decided to use the ASL sign for applause instead of clapping, which triggered his loud noise sensories. That made me cry in a good way ─ that’s what we need to see more of. More acceptance, and less pride in taking “the disabled kid at school to prom.”
6) Read our stories and listen to what we have to say.
You’re already doing a great job of that by reading this blog post. Go online and Google search “actually Autistic bloggers/authors.” Read a book by Dr. Temple Grandin, even though she’s 70 years old and has a very Baby Boomer Generation outlook on Autism. Check out Jesse A. Saperstein’s blog and books, especially since he’s a young Millennial who has a very frank outlook on growing up with Asperger’s Syndrome. A personal favorite of mine that I consider to be mandatory reading, alongside Dr. Temple Grandin and Jesse’s writings, is a novel called ODD GIRL OUT by Laura James. The British author talks of her unique experiences being a cisgender female on the Autism Spectrum. It was one of those moments where I nearly cried because someone got it.
7) Stop selling pseudoscience
Vaccines don’t cause autism. Don’t you dare prescribe me an essential oil for my anxiety. Prayer isn’t always the answer ─ sometimes you need a psychiatrist in the mix, too. (Please read my blog post, “If you love me, stop telling me to be happy.”)
AND VACCINES DON’T CAUSE AUTISM.
8) We’re not faking it ─ we really have a mental disorder.
Far too often, Autism, Anxiety, Depresion, ADD/ADHD, and Obsessive Compulsive Disorder are mistaken as “something being made up as an excuse.” But the thing is, what we’re experiencing is real, strong, and emotional experiences that affect us to our cores. If you wouldn’t tell a disabled person to “just walk, you don’t have to use your wheelchair,” then why would you tell me I’m making up my Autism?
Click this link to see what Jesse’s experiences are with anxiety and his Asperger’s Syndrome:
9) “You don’t have to be on medication. Big Pharma is just trying to take your money.”
Not a good idea. Whatsoever.
In fact, to put it bluntly, this is really, really terrible advice. If I don’t take my Prozac, I start to get depressed. After long periods of withdrawl from Prozac, the symptoms I experience are worsening anxiety symptoms and even feelings of suicide.
Yes, there are some of us who don’t like to take medication and can do so without endangering their wellness. My brother, for example, doesn’t like to take his medication for his ADHD because it gives him stomach aches. He’s able to live a successful life without his medication, and I applaud him for that! But my brother and I are two completely different people, despite sharing similar DNA. What works for one individual might be a nightmare for another person. My dad could never write a ten-page blog post; I could never drive a Peterbilt dump truck in Portland traffic. Should my dad stop driving Peterbilt trucks just because I can’t? Hell no, that would be stupid. The same rule applies for pill taking.
10) Show us some love.
Ask us about how we’re doing right now in our current season of life. Talk to us about our passions. Ask how our current project or job is going. Talk to us about any questions you have about Autism. The more you make it a point to talk about the fact that you’re interested in Autism, being a good advocate, and helping us to be the best versions of ourselves, the more we’re going to respect you. It’s that simple!
Continue reading my blog. I’ll make it a point to try and post more often. And make sure to share Autism-created content, quotes, and symbols to truly raise awareness to what Autism really looks like ─ a rainbow-colored infinity symbol of possibilities.