By Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral
Are you working to become a better ally to the autistic and neurodivergent folks in your community? The surest way to be an effective ally is to reach out to autistic/neurodivergent people to ask how they would like your allyship. If you’re preparing for this type of conversation, here are some points to consider.
1. Listen to the voices of autistic and neurodivergent people and their caregivers.
These last few years of lockdowns have given rise to a surge in humans connecting over the internet and taking time out to hear one another’s stories. Through social media, many verbal autistic people are sharing their experiences and more and more people are listening. This is the first place to begin when learning to be an ally.
Also critical in understanding the autistic experience is listening to the stories of caregivers of those who aren’t able to communicate as they offer a unique perspective and are often deeply in need of compassionate and understanding allies.
2. Throw out your stereotypes
There are autistic people who love to chat, and there are autistic people who struggle to communicate their most pressing needs. Some prefer to be left alone, while others want to spend all of their free time being social. There are people on the spectrum who have intellectual disabilities and those on the spectrum who have a genius IQ. Don’t assume that one autistic person is like another; just like all of the other humans on this planet, autistic folks are individuals.
3. Sympathy is not empathy
On the topic of respect, remember this: you can feel for someone without feeling sorry for them. Don’t fall into the trap of thinking that because someone is different from you, they are inferior or their life must be less fulfilling. Pity assumes inferiority, which is insulting and demeaning. True allies assume competence, recognize their common humanity, and seek to build trust and understanding with their neurodivergent friends and neighbors.
4. If you want to know how they feel – ask
The communication differences between autistic and non-autistic folks remind us of a universal human truth: you don’t really know how anybody feels unless they tell you. Sure, we all try to read each other’s facial expressions and tones of voices, but in a world where our brains work differently, this is an imperfect system! A neurotypical friend of mine recently made this mistake. An autistic teen had been pacing, breathing heavily, and talking under his breath. My friend assumed that the teen was in crisis, but when I simply asked how he was doing, it turned out that he wasn’t even mildly upset – just lost in thought.
On the other side of the coin, if you want someone who is neurodiverse to know how you feel, don’t rely on heavy sighs or raised eyebrows to communicate – speak your truth. Keep in mind that some autistic people use pictures to convey their emotions, while others have alexithymia (an inability to describe their own emotions). Communicating feelings should always be within the bounds of each person’s comfort level. While being upfront about our emotions can remove the guesswork from a vulnerable connection, nobody “owes” it to you to explain their experience.
5. Notice distress? Ask if you can help
In the days before everyone had a GPS in their pocket, I was offered directions many times, simply because I looked lost. Once, as a teenager with a broken heart, I burst into tears in public, and a grandmotherly stranger immediately threw her arms around me to comfort me. Strangers are often happy to help others…. that is, when it is obvious what kind of help they need. The communication differences between neurodivergent and neurotypical folks may mean it’s not obvious, so it’s best to ask.
Like most of these tips, this applies to folks at all points on the spectrum – from those who are non-verbal or need substantial support to those who have the life skills to be one of your colleagues or even your boss. Autistic people of all skill levels are living in a world not designed for them, and they can become overwhelmed or distressed by things that may not be apparent to others. If you see someone “melting down,” they may appreciate the offer of help – perhaps you can get others around them to give them some space, or you can assist them in getting out of a distressing situation. I recently interviewed an autistic man who related the story of his meltdown in an airport, where he cried openly for 20 minutes before anyone offered to help. The message he wanted to convey was this: when someone is overwhelmed, just having someone offer help can be comforting.
An autistic person by themselves in public may be able to articulate what they need with spoken language; a non-verbal autistic person may communicate by signing, using pictures, or gesturing. When the person melting down is accompanied by a caregiver, the caregiver may have more familiarity with the autistic person’s unique ways of communicating and may let you know if there’s something you can do to assist. If you have a friend on the spectrum, it’s helpful to be prepared in advance: ask your friend when the best time would be to talk about their triggers and how you can help during a meltdown.
6. Say what you mean….and mean what you say
Our society accepts, sometimes even encourages, “white lies” to spare people’s feelings, but this can backfire with people on the spectrum.
Consider this scenario: a new acquaintance asks if you’d like to get together, and the truth is that you don’t have space in your life for an additional friend. You might agree to exchange information and rely on the person to “get the hint” from your lackluster tone or the fact that you are always “busy.” But reliance on non-verbal messages like this puts people on the spectrum at an unfair disadvantage. Characteristically honest and literal, an autistic person may think they have actually made a friend and be far more hurt by the subsequent ghosting than they would have been had you simply been honest from the beginning. Perhaps, “You seem like a wonderful person, but I have to be honest that I am really busy, and I don’t have time to devote to a new friendship.”
Develop the ability to deliver messages like this truthfully and with compassion. Remember that most people on the spectrum will take you at your word – and dishonesty is supremely unkind.
Along these same lines, a note about humor: sarcasm and teasing are forms of humor that are often simply not funny to autistic people. This doesn’t mean they don’t have a sense of humor. There are many other types of humor, so if sarcasm and teasing are your main forms of joking, think about expanding your comedic range.
7. Be sensitive to the sensory
The neurological profile of autistic people includes a sensory input system that may be quite different than your own. Most people have always taken for granted that everyone else experiences smell, sound, noise, light, and other visual input in much the same way they do. This assumption can be a huge barrier to understanding and connecting with autistic people. Not only can certain sensory stimuli be uncomfortable, it can also affect their ability to focus, communicate, or regulate their emotions. When my son walked into his kindergarten classroom and saw the walls covered from floor to ceiling with pictures and letters and words, he turned to me and said, “This room makes me dizzy!” Remember that not every neurodivergent person can put into words how these disorienting environments affect them.
8. Get comfortable with noises and movements you don’t make
Everyone stims. When you bounce your knee because it feels good, hum tunelessly enjoying the buzz in your ears, or twirl your hair around your finger: you are stimming. Autistic people might stim in ways that might be less familiar to you – they may repeat words over and over or move their eyes in different ways or flap their arms. Stimming can block out unwanted sensory input – much as children stick their fingers in their ears and hum to block things out. Stimming can absorb energy, as it does when you’re waiting for something and you unconsciously squirm or pace. Stimming can also be calming, as it might be for you when using a stress ball or a fidget spinner. When you see someone in public moving or making noises in a way that you don’t recognize, resist any urge you may have to give a sideways glance. Perhaps, it is simply someone on the spectrum, another human who stims (as we humans do) and deserves respect (as we humans do).
Becoming an ally to any group you’re not a member of means being willing to really listen to another perspective, to honor their experience, and integrate that into your own understanding. Clinical Director Ashley Williams reflects on her own journey:
“I think part of being an ally is being vulnerable enough to recognize that you’ve made mistakes previously. I feel like I used to dig my heels in as a clinician because it was some perspective I clung to, and I didn’t give myself permission to rethink and admit I was wrong. I didn’t see value in changing my mind and admitting my own faults. When it comes to autism, I don’t think I became a better ally until I was comfortable saying I was wrong, and I’m open to feedback/rethinking on an ongoing, daily, basis. I always want to convey my openness to changing how I speak/act/behave to make the world a more welcoming place for those whose experiences differ from my own.”