How should I react if someone tells me they are autistic?
Autism spectrum disorder (ASD) is a condition with a prevalence of 1% in the general population. That is, one in every 100 people is autistic . Given this proportion, it's not unreasonable to think that at some point you have met, know, or will meet someone with autism.
First, it's important to remember that autism is a condition or a different way of being, since it involves a different neurodevelopment, but this in no way means that we should assume it's worse to be autistic than not to be. Some people with greater support needs may identify more with the term "autism spectrum disorder," but a large part of the autistic population identifies with the term "autism condition" or simply "autism." This should make us reflect and understand that there are other ways of being, of understanding the world, and of processing information. We must be open and respectful of these "different ways" (we could talk about the concept of "neurodiversity"), which will likely prove enriching.
If we are respectful and value the fact that everyone can contribute with their differences, we must avoid making comments or acting in ways that might imply that not being autistic is better or superior to being autistic. With this in mind, we offer a series of recommendations, aimed at neurotypical people (that is, those without a neurodevelopmental condition) who want to be respectful neighbors, colleagues, partners, family members, or friends; but also at autistic people who want to help those close to them better understand them.
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WHAT WE SHOULDN'T SAY OR DO
"Are you autistic? You don't look it."
The information we consume from the media, films, books, and social networks, or the experiences we hear from acquaintances of acquaintances, can contribute to the formation of very harmful prejudices about people. There is no single way to "be" or "appear" autistic . This comment, regardless of the intention behind it, can be very hurtful to the listener and only highlights the burden of prejudice they carry.
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This is a mistake on several levels. To begin with, we reiterate that autism is not an illness , but rather a neurodevelopmental condition. If it is not an illness, it has no cure . There are, however, interventions to improve the well-being of autistic individuals, but these are far from miraculous, as they require time and effort from all involved (the autistic person, therapists, and their families).
There are other ways of being, of understanding the world and of processing information, and we must be open and respectful of them.
Sharing poorly substantiated theories
"Well, I've heard that vaccines..."; "They say it's the mothers' fault, that they're cold..." Outdated or conspiracy theories abound, but they can be especially hurtful and harmful if they involve a person's life experience or invalidate the information they receive from the professionals who care for them. Going through a diagnostic process is stressful and confusing enough without adding unfounded information that fosters stigma and stereotypes about autistic people and their families.
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"Now that you've been told you're autistic, you seem more autistic."
Autistic individuals have had, and continue to have, to interact with a predominantly neurotypical world, and to do so, they often use masking . Masking aims to conceal characteristics of the autistic condition that don't seem to fit in socially, such as forcing eye contact, suppressing stereotypies, or socializing when they lack the energy. These behaviors can be emotionally and physically draining for the autistic person, negatively impacting their anxiety and even their sense of self. It's not that they are "more autistic"; it's simply that they are probably no longer masking in front of you.
Changing behavior...for the worse
From treating someone with contempt to being condescending , or even cutting off all contact with the person who has told you they are autistic, these are the best ways to avoid losing a friend or loved one. If, on the other hand, you want to maintain this connection but aren't sure what to do, here are some suggestions.
WHAT CAN WE DO
Use direct language
In our everyday communication, we often use irony and clichés, which may not be easy for many autistic people. Using more direct or literal language can facilitate communication. And if the autistic person asks to verify, "Are you kidding?", we should answer kindly.
Use adapted communication
Some autistic people may need certain adaptations to communicate effectively. They may be more focused or feel calmer if they don't have to make eye contact, and sometimes they may need speech that isn't fast. Just as we make an effort to communicate differently when someone is a foreigner, we can also make a mutual effort to communicate between autistic and non-autistic people.
We must have the confidence and composure to say to the person, "If you need to rest and avoid eye contact, you don't feel obligated to do so," or "If you didn't understand something, just ask." Ultimately, we must be kind and make things easy for the person with whom we have a connection.
Anticipate
In general, we don't appreciate last-minute changes, so you can save the other person from feeling bad or upset with a simple heads-up. Most autistic people don't like improvisation , and this is something we should keep in mind. Making a plan in advance (where, when, with whom...), letting them know if it changes, having backup plans in case it's canceled, and avoiding vague phrases like "I'll call you later" or "we'll talk" are some changes that can improve communication with others, whether they are autistic or not.
Take into account the sensory experience
Keep in mind that everyone has their own sensory experience, but in the case of autism, it's much more pronounced. Some people may have hypersensitivity to sounds, lights, or touch , which can trigger pain or anxiety responses. Just because a non-autistic person doesn't perceive it doesn't mean it isn't true. So, you can ask them about their sensory experience and create a comfortable environment for both of you. Adaptation needs to be mutual, and being mindful of the sensory aspects of spaces benefits everyone.
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Don't know? Ask.
Ask questions, because autistic or not, every person is different. But ask questions respectfully and empathetically, because the person who told you this trusted you, and you should treat that trust with the care it deserves. If you want more information, try to find it in reliable sources.
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