Autism Appreciation Month: Things You Need to Know
April is Autism Acceptance Month, previously known as Autism Awareness Month (and perhaps in the future to be known as Autism Appreciation Month!) Like anything that is starting to shift in the public eye, there is a long history of social justice, community experiences, and hard work behind the movement. Hopefully this piece will situate you to understand more about the autistic experience, the obstacles we face in society, resources to keep learning, and of course, the strengths of autism that are worth celebrating.
Prepare to Unlearn What You Thought You Knew About Autism
A common reaction to the word “autism” is sadness and fear, especially from parents worried about their children. I think they often worry that their child will face more difficulty in life, and the fear and guilt come from a place of love. It also comes from how we have portrayed autism in media and in public health information. For example, this 2009 PSA from Autism Speaks begins with:
“I am autism… If you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Autism Speaks is a particularly nefarious organization, rejected by the Autistic community for a variety of reasons, including their lack of autistic representation, their harmful lobbying, and the fact that little of their budget actually goes to help struggling families. The fact that people often respond with sadness and fear around autism is a collective problem that we can all fix together, primarily by listening to Autistic run organizations such as Autistic Self-Advocacy Network (ASAN), Autistic Women and Nonbinary Network (AWN), and Self-Advocates Becoming Empowered (SABE)!
In the Autistic community, many of us reject the common treatment of Applied Behavioral Analysis (ABA), or at least the ideas it is founded on: a behaviorist approach to make Autistic kids more ‘normal’. ABA tends to be pitched to parents as “without ABA, your child has no hope”. Though, some ABA work can be very successful in helping a child with language skills, social reciprocity, and reducing self-injurious behavior. My personal stance is that the therapy should never have the aims of covering up the autism, but should aim to support what the child needs (such as distress tolerance and coping skills around sensory disturbance, social understanding but not mimicry, new ways to pursue the child’s own special interests, and reduction of any harmful repetitive motions). If some form of repetitive “training” can help a child to make sense of the chaos around them, I think there’s a lot of benefit there. But if the ABA is to make the child learn the motions of a neurotypical world, repeating “hi, how are you?” and smiling for photos and suppressing their own stimming, then we need to re-evaluate who the therapy is actually for.
Instead of using the terms “High Functioning” or “Low Functioning” or different Autism “levels”, it is helpful to think of the Autism Spectrum as a combination of skills and deficits; some traits we excel at and others we need support in. Often there are traits we can be amazing at while struggling with tasks that neurotypicals tend to find simple. Self-advocacy skills (discussed next) can help us identify which areas we need extra support in.
One of the best ways to start understanding the Autistic community is to read our work, look at our art, follow us on social media, and get to know one of us! The hashtag #actuallyAutistic is for Autistics speaking for themselves as opposed to parents or healthcare providers speaking about autism (which also has it’s place, but we needed a dedicated space for our own community!). You can learn more by following this hashtag on almost every social media platform.
Your first steps to understanding Autism involve these shifts:
Awareness →Acceptance → Appreciation
“High Functioning”/”Low Functioning” → Spectrum of Different Needs
Fear/Sadness →Willingness to Learn→ Empowerment of Autistics
ABA →Whatever combination of techniques that best support the child’s authenticity, interests, and needs
Hope for a Cure → Celebration of Neurodiversity
the Self-Advocacy Movement
“Nothing about me, without me”
I’m going to explain self-advocacy, but I found a video that is one of the best things I’ve ever seen, led by students with disabilities and featuring “Captain Self-Advocacy”, a superhero in tights with an amazing pink cape. It covers self-advocacy in school, the history of the self-advocacy movement, and skills for speaking up for yourself! Self-Advocacy: Find the Captain in You!
I found this amazing video in this list of resources about Self-Advocacy Best Practices! They define self-advocacy as:
Learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.
The core ideas of self-advocacy in the disability justice context are that we should be included in decisions made about us, and that our perspectives are important, insightful, and valuable. My research at the UW iSchool actually centers around self-advocacy skills for people harmed by algorithmic bias on social media. Basically, I’m inspired by my own development of self-advocacy skills and want to apply them to my interest in machine learning, algorithms, and algorithmic harm. Because self-advocacy is not just for people with disabilities; it is for everyone. From asserting your pronouns, sensory needs, cultural experiences, and speaking up against racism: We should all be able to express our needs, challenge systems that aren’t working for us, and come up with solutions together.
What It’s Like to Be Autistic From One Autistic Perspective (Me!)
My autism went undiagnosed throughout my childhood; a common experience for those Assigned Female at Birth (AFAB). This article goes into a bit about the gender differences in Autism diagnosis, and how female Autistics tend to “mask” or cover up their autism more, likely due to societal pressure on women and girls. But there’s actually another gender-related overlap when it comes to my autism. Autistics are more likely to be transgender! I am non-binary trans, and I use they/them pronouns to describe my experience of gender identity. I’ve reflected on this link a lot, and for me it’s just that I don’t understand why we would have gendered roles and expectations in society. Why would we dress children differently, or have jobs meant for one genitalia over another? Why should our haircuts indicate our reproductive systems? This is a chat for another time, but whatever the reason, we know that autistics are more likely to be trans than non-autistics. And though it has taken me a lot of trauma recovery work, I’m more proud then ever to be who I am.
If you’ve met me in person, you might notice some of my characteristic behaviors. I speak in a unique way, make myself laugh with my own jokes, speak when it’s not my turn (working on it!!!), and have intense interests that I get very excited about. I’m extremely sensitive to noise and touch; and I am pretty hyperaware of social communication and I’m always trying to get it “right”. I don’t shake hands, I often look at your shoulder instead of your eyes, and I’ve never understood the purpose of small talk other than an indication of social reciprocity I suppose. I have lots of toys on my desk and a big sign that says “Please don’t touch me” similar to a Do Not Tap on Glass sign for snakes (the sign clarifies that as well of course). To be honest, sometimes I feel like the loneliest person in the world. My mind is such a special place, where I go to retreat from the unpredictability of social nuance. I tell myself stories, I concentrate on math problems, and I imagine myself in a giant library filled with infinite information on my special interests. You might say that getting a PhD in Information Science was a pretty good choice and I would agree with you. Once I learned more about self-advocacy skills (especially within an intense degree program), I began to thrive instead of just survive. I switched research groups, I ask for the accommodations I need, I stopped mimicking social phenomena that made me feel bad (like shaking hands at conferences), and I allow myself to stim in public much more. I ask others for patience because I simply cannot pick up on social cues they might have; such as when I’m talking too long or too loud or not making sense. I tell people to please correct me or interrupt me, because I struggle to read social cues that many others have access to. I have learned what works to help me interact with my peers (many of whom are autistic too in computing/information PhDs!). And I have learned to insist that I deserve to have my needs met even though they are unique.
I am constantly changing; constantly discovering new interests and needs as I navigate the awfully complicated world of academia. I’ve learned to ask for clarification, definitions, written summaries of meetings, and clear expectations. And I’ve been able to learn this through releasing the shame that others put upon me from the get-go. My autism, my transness, my traumas, my needs; they are not shameful. Through learning this I have allowed my resilience to shine.
That’s just one experience, so check out this video that features lots of Autistics across the spectrum, responding to different prompts about their experiences: Do All Autistic People Think the Same? | Spectrum
Takeaways
- There is a lot of outdated information and rhetoric we need to unlearn about Autism 🤔
- Any treatment for autistic individuals should be about helping the child to thrive, not making them more ‘normal’. 💪
- There are some great organizations that center Autistic voices such as: Autistic Self-Advocacy Network (ASAN), Autistic Women and Nonbinary Network (AWN), and Self-Advocates Becoming Empowered (SABE)! 🌈
- Self-Advocacy is primarily a principle from disability justice work that centers those affected most; valuing their perspective and insight as an integral part to solution-building. We are the captains of our own ships!
🚢 - Autistics are more likely to be gender diverse (trans)! 🏳️⚧️
- We tend to have special sensory needs and can be easily overwhelmed by sensory disturbance 👂
- Our special interests are our PASSIONS. Our OVERWHELMING, MUST-TALK -ABOUT PASSIONS. Sometimes we can’t pick up on cues of when to stop talking, but if you give us a chance to delve into our special interest, you will make us very happy. Mine is machine learning algorithms. 🧑💻
- Neurodiversity is a blessing that deserves to be celebrated and understood. If you’re grappling with a new diagnosis or thinking you might be on the spectrum, Congratulations. I wish you peace of mind and self-care as you embark on this journey. 🎉
