Finding HopeAutism Awareness and/or Autism Acceptance
Posted on April 4, 2021
And here we are. It’s the last day of Autism Awareness Week…
Recently – and not just this week – I’ve been seeing a lot of discussion about whether Autism Awareness Month/Week/Day should be Autism Acceptance Month/Week/Day instead. I’ve seen lots of people saying we’re past the point of awareness and that acceptance should be the primary focus. Of course – of course – I think acceptance is vitally important and the way forward but when it comes to the point about awareness, I’m not sure.
Are people ACTUALLY aware? Yes, many people are aware that Autism exists. But… Are they aware that it presents differently in different people? Are they aware that it presents very differently in females to males? Are they aware of how hard many autistic individuals work to mask their Autism and how damaging that can be in the long term? Are they aware of how much anxiety a change of plans can cause? Are they aware that autistic individuals may need more time to process information than their neurotypical peers? Are they aware of what sensory sensitivities are actually like to live with? Are they aware of what is going on for an autistic person when they’re having a meltdown? I’m not sure many people are.
Autism Awareness, in my opinion, isn’t just about being aware that Autism exists. It’s about having an actual awareness about the experience of it, the full picture – as much as you can when a condition can present so differently in each person. So many people – many of them good and decent people – still don’t have a real awareness of what the main areas of difficulty can be for autistic individuals, how they can support their neurodivergent peers, and how they can be allies in the fight against ableism. I think this is particularly important when it comes to institutions – medicine (both physical and mental), education, etc – because in my experience at least, many people in these institutions don’t know much about Autism at all. There has not been a single medical appointment in my memory that I’ve gone to where I haven’t had to explain at least one big relevant area of my Autism. And not just in specific, personal terms but in general this-actually-exists terms. With all of that in mind, have we outgrown the need for Autism Awareness and Autism Awareness Months/Weeks/Days? I don’t think we have.
I’ve seen other people talking about acceptance as more positive than awareness, that awareness comes from a past of seeing Autism as a problem to be solved, an obstacle to be negotiated whereas acceptance is about the future, about welcoming autistic individuals into society rather than sidelining them. I can completely understand this point of view and I don’t disagree, but I think that’s a big leap to make. Can you truly accept something without, at the very least, a basic understanding of it?
Maybe I’m being too literal. But I think it comes down to more than awareness OR acceptance. Maybe it’s both. Maybe it’s a different word altogether. Maybe we should take the lead from Twitter’s #actuallyautistic hashtag and have an Actually Autistic Month to put the focus on the actual individuals with Autism. I don’t know. I’m not going to pretend to be the font of all knowledge when it comes to this, when it comes to Autism. This is just my two cents. I think awareness is still necessary but acceptance is vital to the quality of life of autistic individuals. I don’t think it’s one or the other. I think it’s a topic that still needs conversation and development.
So… awareness or acceptance? I think it’s both. I think it’s awareness and acceptance.
I hope this week of posts has been helpful and interesting! Don’t forget that April is Autism Awareness Month so, where possible, let’s all keep reading and learning and raising the voices and experiences of autistic individuals.
Quotes That Helped Me (Autism Edition)
Posted on March 30, 2021
Given how much I love quotes, I thought this week would be a good opportunity to share a compilation of quotes specifically about Autism and from autistic individuals…
“If you’ve met one person with autism, you’ve met one person with autism.” – Dr. Stephen Shore
“English is my 2nd language. Autism is my first.” – Dani Bowman
“My autism is the reason I’m in college and successful. It’s the reason I’m good in math and science. It’s the reason I care.” – Jacob Barnett, sixteen-year old math and physics prodigy
“Think of it: a disability is usually defined in terms of what is missing… But autism… is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.” – Paul Collins, Not Even Wrong: Adventures in Autism
“I don’t really understand why it’s considered normal to stare at someone’s eyeballs.” – John Elder Robison
“Our experiences are all unique. Regardless, I do believe that it is important to find the beautiful. Recognize that there is bad, there is ugly, there is disrespect, there is ignorance, and there are meltdowns. Those things are inevitable. But there is also good.” – Erin McKinney
“Autism is as much a part of humanity as is the capacity to dream.” – Kathleen Seidel
“By holding the highest vision for your child when they can not see it for themselves, you are lifting them up, elevating them and helping them to soar.” – Megan Koufos
“Autism… offers a chance for us to glimpse an awe-filled vision of the world that might otherwise pass us by.” – Dr. Colin Zimbleman, Ph.D.
“My autism makes things shine. Sometimes I think it is amazing but sometimes it is sad when I want to be the same and talk the same and I fail. Playing the piano makes me very happy. Playing Beethoven is like your feelings – all of them – exploding.” – Mikey Allcock, 16-year-old who was non-verbal until age 10
“Vibrant waves of sequenced patterns emerged in my head whenever I looked at musical notes and scores. Like pieces of a mysterious puzzle solved, it was natural for me to see music and its many facets as pictures in my head. It never occurred to me that others couldn’t see what I saw.” – Dr. Stephen Shore
“We contain the shapes of trees and the movement of rivers and stars within us.” – Patrick Jasper Lee, an autistic synaesthete
“I looked up to the stars and wondered which one I was from.” – James McCue
“I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life.” – Tony Attwood
“My mind doesn’t stop; it spins and shifts in different directions creating webs of patterns, linked by varying hues.” – Michael Bowring
“Stop thinking about normal… You don’t have a big enough imagination for what your child can become.” – Johnny Seitz, autistic performance artist
“Rome was not built on the first day. I need time to build the Eiffel Tower of my life.” – Jeremy Sicile-Kira
“As an autistic, I can readily see environmental phenomena of sun particles interacting with moisture in the air and rising up from the ground. I thought of these things I could see as sun sparkles and world tails.” – Judy Endow, Painted Words: Aspects of Autism Translated
“Low pitched notes really make me feel like love might be truly possible. High pitched notes make me feel like I could go crazy with pain and sadness. Great rhythms can make me feel like life is freedom.” – Jeremy Sicile-Kira
“You are not in the mountains, the mountains are in you.” – John Muir
“Our wounds and hurts and fears are in our eyes. Humans think they build ‘walls’ for internal privacy. They think eye contact is about honesty but they mostly lie because they think they can hide their intent. Eye contact is invasive.” – Carol Ann Edscorn
“My fear is that if I don’t mask, push through and show how capable I am, I won’t be offered opportunities in the future or be valued the same.” – Emily Swiatek
“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” – Paul Collins
“As soon as a child is capable of understanding, they will know they are different. Just as a diabetic needs insulin, an autistic child needs accommodations. The label gave me knowledge and self-awareness.” – Steve Andrews
“No, autism is not a ‘gift.’ For most, it is an endless fight against schools, workplaces and bullies. But, under the right circumstances, given the right adjustments, it CAN be a superpower.” – Greta Thunberg
“To measure the success of our societies, we should examine how well those with different abilities, including persons with autism, are integrated as full and valued members.” – Ban Ki-Moon, Former United Nations Secretary-General
“No matter how hard I try to learn from other people or copy what others are doing, I can’t quite get it right. It’s like living in a foreign country and not knowing the language.” – Rosie King
“Routine is a pivotal part of my daily life and any deviation, however slight, can cause great discomfort to me.” – Nathan Cornfield
“Avoiding eye contact is one of the things I find myself automatically doing to minimize the quantity of incoming sensory information.” – Judy Endow
“Autism doesn’t have to define a person. Artists with autism are like anyone else: they define themselves through hard work and individuality.” – Adrienne Bailon
“Autism is like a rainbow. It has a bright side and a darker side. But every shade is important and beautiful.” – Rosie Tennant Doran
“I don’t want my thoughts to die with me, I want to have done something. I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution – to know that my life has meaning.” – Temple Grandin
“I’ve listened enough. It’s time for me to speak, however it may sound. Through an electronic device, my hands, or my mouth. Now it’s your time to listen. Are you ready?” – Neal Katz, Self-advocate
I really enjoyed putting this post together. Or more accurately, putting this blog post together was a very emotional process, with emotions from both ends of the spectrum (no pun intended). It was really positive and also deeply affecting. Some of these quotes hit so close to home that reading them brought tears to my eyes; some of them resonated with me in a way that was deeply inspiring and comforting. Doing this has actually made me feel less alone and more able to understand and express how I feel, something that I already felt like I was pretty good at. So that wasn’t something I expected.
Whether you were as moved by these quotes as I was or not, I hope you found something in this post that spoke to you, that helped you, or that even just made you feel something. Expressing ourselves can be so difficult; sometimes we need a bit of help and sometimes that help can come in the form of the words of others.
