Autistic Etiquette 101

Unless folks are personally immersed in the world of neurodivergence and advocacy, it is rare to find people who understand how to kindly, respectfully, and effectively interact with autistic individuals. I have found myself in the position of educating not only friends and family, but professionals, healthcare providers, and others. Honestly, it's exhausting. So to save myself future spoons, I figured it made sense to make a single post that I can easily refer people to. I hope this is helpful. Don't forget to click on the embedded links to get more detailed explanations. As a reminder, I am speaking from the perspective of an adult, autistic woman who has become very good at masking my autistic traits over the course of 4 decades (which contributed to a massive amount of developmental trauma and other really hard situations). I do not speak for every autistic individual. 

​Let's start with things not to say when somebody tells you they are autistic. ​​

• "You don't look autistic." Honestly, I want to respond to this statement with "and you don't look ignorant, yet here we are" or perhaps by putting someone on the spot with, "so tell me then, in your experience with neurodiversity, what do autistic people 'look' like?" But of course I don't say that. The point is, autism doesn't have a "look" and this statement is in no way a compliment. Being able to mask (hide) autistic traits in order to appear neurotypical for a short time is exhausting and very harmful for an individual's mental health.  
  
  
• "Are you sure? I don't think that's right because you can ____________." (Insert statements like get a job, make eye contact, have in depth conversations, show empathy, or other stereotypical challenges autistic people face). Just no. Every autistic person has their own unique challenges and strengths. Stereotypes like these need to be done away with. 
  
  
• "You must be high functioning then" or "Your autism seems mild." While the public and even healthcare providers seem rather obsessed with functioning labels, they are harmful and often highly inaccurate. Just because I can mask (which causes great harm to myself) to appear "normal" for short amounts of time, doesn't mean intense struggles aren't happening behind closed doors. Keep in mind that hiding autistic traits is a often an unconscious act that serves to protect the autistic individual from bullying, abuse, and becoming a social outcast. Calling my autism "mild" actually means that it affects you very little because I have learned to mask my autistic traits, to stim in ways that other people tend not to notice, and to retreat away from people when I feel sensory overload coming on so others tend not to see meltdowns or shutdowns. It affects you mildly. It does not affect me mildly. I repeat, it does not affect me mildly.  Here is a visual for more about functioning labels and the autism spectrum:  Understanding the Spectrum - A Comic Strip Explanation 
  
  
• "Everybody is a little autistic" or "I'm a little autistic too." So is everyone a little pregnant? No. Autism has a specific set of diagnostic criteria and while people might exhibit some autistic traits, many things have to be present together for a diagnosis of autism. With that said, it can be incredibly difficult to get a formal diagnosis, especially if you are an adult or female. Many people are without access to a properly trained neuropsychologist... and that is a topic for another post. But for now, let's just not say "everybody is a little autistic."   
  
  
• "Have you tried ________?" (Insert things like going gluten free, yoga, a certain medication or therapy, etc.).  Again, just no. While there are so many things that are indeed helpful in managing the day to day challenges that come along with being autistic and having highly sensitive nueroception, please don't give unsolicited advice. 
  
  
• "Well, you are nothing like _________." (Insert another autistic individual this person knows here such as a nephew or cousin or maybe a fictional character such as Rain Man or The Good Doctor or Sheldon from Big Bang Theory). The short answer is, "No I'm not."  Again every autistic person is unique and furthermore, as an adult autistic woman, I am obviously not going to fit society's stereotype of what autism "looks like" (remember, there's not actually a look). However, don't blatantly discount and invalidate my lived experience, uniqueness, and lifelong struggles. 


• "Maybe someday there will be a cure." Autism is a neurological difference, not a disease to be cured. Again, while there are strategies that can help us live better lives in a world that was not made for us, talk of a "cure" or overcoming autism is offensive and ableist. Also, a quick note that the autistic people in my circles see ABA therapy as abusive and Autism Speaks as a hate group. A quick Google search will give you loads of information on why. ​
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• Please don't use passive, indirect language. Say exactly what you mean. The amount of energy it takes attempting to interpret someone's meaning and intentions when they don't use precise language is exhausting. For example, I worked in a restaurant when I was a teenager. Scenarios like this happened often, before I had decades of hard life experiences teach me to be incredibly anxious about what people say and to always look for their hidden meanings. If my boss said "those tables are dirty." I might agree with him and say, "Yes they are" (as my brain might launch into reasons why they are dirty, if there was some event in town that caused us to be busier than usual, why he thought that was an interesting topic to talk about, and who knows what else). He might get mad at me as I then continued on with whatever task I was currently doing, seeming to ignore his (very passive) request. However, if he would have just said, "please clean off those tables," a massive amount of energy and frustration could have been saved on both our parts if he had actually said what he meant the first time around.  

As far as perceived communication "deficits" go, here are a couple more things to check out: 
- Autistic peer-to-peer information transfer is highly effective
- Milton's double empathy problem: A summary for non-academics

I prefer Identity-First Language, not Person-First Language. I am an autistic person, not a person with autism or a person who has autism. I am definitely not a person who suffers from autism. If you're not sure how someone prefers to be addressed, here is is a sure-fire way to know. Just ask. 

I'll tell you what I do suffer from though. I suffer from living in a world where unkind people often take advantage of and bully vulnerable individuals. I suffer from sensory assaults on a daily basis - fluorescent lights, mind-numbing cacophonies of sounds, perfumes, fabric softeners, and so much more. I suffer from living in a state / country where it is incredibly difficult to access appropriate diagnoses and supports. (I had to pay $1500 out of pocket and drive over 6 hours to see a specialized neuropsychologist who was able to assess an adult woman and provide an accurate diagnosis). I suffer from years of internalized ableism. "Try harder. Suck it up. If they can do it, why can't you? Stop being so sensitive." Yeah, none of that is helpful and it is actually very harmful. I suffer from severe PTSD because I wasn't officially diagnosed until I was 40 years old which made me more susceptible to all kinds of abuse. I didn't realize just how different my way of being in the world was and that it made me so very vulnerable. I suffer from anxiety that comes from... well countless sources. I suffer from the effects of a lot of miscommunication and misunderstandings, living in a passive, midwestern culture where people often don't actually say what they mean. Did I mention, that my autism does not affect me mildly?

I will continue to add to this post, which will undoubtedly get much longer, but this is a good start. Here are some Facebook pages, in addition to my own page, The Autistic Acupuncturist, that post a lot of good information on this topic: 
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- Kristy Forbes – Autism and ND Support
- Neurodivergent Rebel
- Trauma Geek – Trauma and Neurodiversity Education
- Neurodiversally Unbroken
- Neuroclastic
- Not Another Autistic Advocate
- The Autistic OT
- The Neurodiverse Woman
- Hello Michelle Swan
- Autistic Not Weird    

​~ Mellie