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This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.

02 August 2012

How to Talk to an Autistic Adult

  1. You are speaking to an adult. Do not use a baby voice.
  2. Do not ask where the adult's parent, caregiver, personal assistant, or staff person is. This person is an adult and will not necessarily be accompanied by someone else.
  3. Don't assume that the adult is ignoring you if he, she, or xe isn't looking at you or making eye contact.
  4. Don't assume that the adult is ignoring you if he, she, or xe is looking at a phone, an iPad, or elsewhere in general.
  5. Don't assume that the adult isn't hearing what you're saying if he, she, or xe doesn't give you "yeah," "uh-huh," "mm-hmm," etc. responses while you are speaking.
  6. Pause when you're done talking long enough for him, her, or xir to begin speaking or typing.
  7. Be cognizant that the adult may have cognitive processing delays, and give him, her, or xir extra time to process what you're saying and formulate a response.
  8. If you are speaking to an alternative and augmentative communication user (i.e. an adult who communicates using picture cards, signs or symbols, a letter board, or by typing), give him, her, or xir even more extra time both to formulate responses and to produce them. AAC takes longer than speaking, so make sure that the adult is actually getting equal time to "speak."
  9. If the adult has a personal assistant, caregiver, parent, or staff person accompanying him, her, or xir, do not speak to the Autistic adult through the other person or ask that person questions about the Autistic adult. Address the Autistic adult directly.
  10. If the adult has a service animal, such as a dog or a cat, do not touch, call to, or make sounds at the animal without explicitly asking the owner for permission.
  11. Don't feel awkward or rude if you're looking at the Autistic adult's eyes or face and he, she, or xe isn't looking at yours.
  12. Don't ask him, her, or xir personal questions, such as those related to his, her, or xir health and wellbeing, sexual life, or finances that you would not ask a nondisabled adult of similar acquaintance.
  13. Don't ask an Autistic adult what he, she, or xe does or where he, she, or xe went to college, because a disproportionate number of Autistic adults are unemployed, underemployed, and or denied access to college. While there are many Autistic adults in meaningful employment and who are in or have completed postsecondary education, there are many more who are not yet, and asking this question can create awkwardness and tension.
  14. If you happen to be talking about relationships, romance, or sex, don't assume that the adult doesn't or has never had a relationship or sex. While many Autistic youth are denied access to sex education, the diversity and wealth of sexual experiences and romantic and sexual relationships that Autistic people have had are equal to the diversity and wealth of sexual experiences and romantic and sexual relationships that non-Autistic people have had.
  15. If you happen to be talking about parenting, don't assume that the adult isn't a parent unless he, she, or xe has already told you that he, she, or xe isn't one. Many Autistic people also have children. (Sometimes, their children are Autistic as well.)
  16. If you need to ask the adult a question, try to make the question as specific as possible. Broad, generalized, and vague questions are cognitively inaccessible to many Autistic people.
  17. Don't yell, scream, or shout at the adult. Loud voices can trigger panic attacks and extreme anxiety.
  18. Don't stare at the adult if he, she, or xe is stimming -- fidgeting with an object or hair, flapping the hands or arms, pacing, making noises, spinning, rocking, etc. -- and don't feel awkward about it, either. This is normal and natural behavior.
  19. NEVER tell an Autistic adult to have "quiet hands." Ever.
  20. Don't tell an Autistic adult that he, she, or xe is wrong about what he, she, or xe is thinking and feeling. That's called gaslighting. He, she, or xe knows him, her, or xirself best.
  21. If an Autistic adult refers to him, her, or xirself as "autistic," don't correct him, her, or xir and say that that's disrespectful or offensive, and that the adult should be saying "person with autism" instead. Everyone has the right to identify however they wish.
  22. Don't use the word "retard" or "retarded" in the adult's presence. Too many of us have been bullied, silenced, and attacked with this word to ever make that okay.
  23. If the adult tells you that he, she, or xe needs to leave an area to continue the conversation, listen and do it. The location may be causing sensory overload, anxiety, spoon loss, or other barriers to effective communication.
  24. Never touch an Autistic adult without asking first, unless he, she, or xe initiated (i.e. by reaching to hug you or offering a hand for a shake). If the adult doesn't initiate, ask, "do you do hugs?" or similar.
  25. Don't feel awkward if the adult seems to change the topic of the conversation suddenly. You can always suggest going back to the original topic if you still want to discuss it -- though if the adult tells you to drop a topic, drop it.
  26. You are speaking to an adult. Speak to him, her, or xir with the same vocabulary, tone of voice, and type of conversation that you would with any other nondisabled adult in a similar situation or of similar closeness or acquaintance.



17 comments:

  1. Good post. 19 is good, but you should also include "don't tell us to talk quieter, unless you want us to focus more on the volume of our voice than on the content of our words."

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  2. Thank you. The same can be said of an autistic child.

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  3. This is good, but I don't really like the parts that say "Don't feel awkward if..." A person can't really just snap their fingers and stop feeling awkward. I'd want for people to respect me and my differences, but I would never expect them to be able to control whether or not they felt awkward about it. I'd like for them to get used to me and to understand why I'm doing what I'm doing so that they can get to the point where they lose their awkwardness around me, but I'd never insist that they weren't allowed to feel awkward before they got to this point.

    ReplyDelete
    Replies
    1. You bring up a very good point. Don't ask for what you can't expect to get - it just sets up a losing dynamic. Good communication - with anyone - requires genuine respect.

      Delete
    2. "would never expect them to be able to control whether or not they felt awkward about it"

      This is a request. NTs often DEMAND that we not do something natural and give us a disability label if we don't. So yeah, double standards.

      Delete
  4. Re numbers 14 and 15:
    Don't assume that their experiences will match yours or diverge from yours in any particular.
    (e.g. saying "It's just like your first date/teenage crush/sexual encounter/etc.")
    Such assumptions will confuse adults who don't understand what you're assuming.
    Adults who do understand what you're assuming will not necessarily stop you and correct your assumption. They might write off the conversation (and you along with it) or they might string you along and see if you catch your mistake.

    ReplyDelete
  5. My son is non verbal, however he makes noises all day., sounds of airplanes, the blender, trucks that drive by. as of yet, He is unable to tell me why. should I attempt to make him stop in public? at home?

    ReplyDelete
    Replies
    1. If the sounds are non-disruptive and appropriate for the setting (home, etc), then let him be. If you are in a setting where the sounds would be disruptive (movie theater, church, wedding, etc), talk to him first about where you are going, why and that you would like it if he could be quieter if possible. Maybe look at other methods of allowing him to express himself (stress ball, fidget toys, etc). Always be prepared to leave with your son, no fuss, if it seems to overwhelm him. When my son stims it is both verbal (throat sounds) and physical (hand flapping). A light touch on his arm tends to calm him and bring him back to his surroundings, but that has taken years to get to that point, and I only do that if it is necessary. If he doesn't bother anyone else, he doesn't bother me. It is akin to telling 'typical' kids to use 'inside voices'.

      Delete
  6. I wouldn't. My son is nonverbal, and makes noises. I look at it as a positive. As hope that the sounds might one day lead to words.

    ReplyDelete
  7. I hate being autistic , no education, unemployed and being on disability benefits.

    every year I get interviewed to see if I'm fit for work even though my life won't change ever and I will always be like this.

    They never understand what autism is and I don't know how to explain it, they ask me what I do and I just say nothing because I do nothing.

    I just sit at home alone almost 24/7 usually on the internet playing games or watching movies/tv on demand.

    they seem to act like I am being difficult and it's my fault that I don't understand the questions they are asking because they don't add any context to them and my brain doesn't know how to work out what they are really asking.

    They look at me like and treat me like I'm a fraudulent claimant because they don't have the knowledge needed to understand how someone's life can be when they are autistic.

    the stress every year is insane to the point where I often think about how I could end my life as quick as possible with as little pain as possible..


    I was only diagnosed as an adult so I have basically wandered through life aimlessly , the 2 guys who did my diagnosis were simply stunned that during my childhood I went undiagnosed considering I skipped 3 whole years of school.

    I think anyone who goes through life and only gets diagnosed as an adult is basically ****** with no coping mechanisms that are learnt to autistic children as they are educated

    ReplyDelete
    Replies
    1. Anonymous, you say that you think often about ending your life, but you haven't done so yet (and I hope you won't)...so I can't help but think there's a reason why not...that there's something that does matter to you in your life or that means something to you.

      If you think that you're really in danger of ending your life or harming yourself, would you contact these people first to talk about better options?

      National Suicide Prevention Hotline: http://www.suicidepreventionlifeline.org/

      While it's true that a LOT of autistic adults remain unemployed, have to use disability benefits, and suffer educational discrimination and neglect, that doesn't mean that your life has to be meaningless or miserable or that you have to hate yourself.

      You say you got diagnosed as an adult, and the people who gave you a diagnosis were incredulous that you hadn't been before--could you get in touch with them and see if maybe they could put you in touch with a neuropsychologist or someone who might be able to help you understand how you work better, and what exactly your most severe problems and also your natural strengths might be?

      Because I've never actually met anyone who truly didn't have any strengths at all.

      Also, if you have depression as well as autism (which is very common, because of the misunderstanding and ostracism that we often suffer from), that is very treatable, and a clinician who really understands your autism would probably be able to help you come up with some strategies to make life better for you.

      It also sounds like maybe you would benefit from having some connection to other autistic adults in your life? Is it possible that an older family member or someone is also autistic, who you could talk to? (That's really, really common, for someone to be diagnosed and then realize that older family members probably are autistic as well.) There are also communities online, where I've found it can be really constructive and comforting just to share your frustrations with other people, and people also share information about what's worked for them and what hasn't.

      Lastly, if there is *anything* at all in your life that you truly enjoy or feel good doing, would you consider getting more involved in that? Anything at all that you genuinely feel good doing can really be a lifeline, as well as a way to nurture your strengths and find people you enjoy.

      I hope things get better for you.

      Delete
    2. What do you think about the Neurodiversity Activists who are trying to erradicate the fear, bigotry, stigmatization, misconceptions, and ignorance that normal people have about autistics?

      What do you think about the Autistic Self Advocacy Network (ASAN)? What do you think about the Autism Network International (ANI)?

      These are trying to create acceptance for autistic people in all social environments INCLUDING EMPLOYMENT.

      Delete
    3. I know that there are many busyness's which are employee owned by autistic people and they hire other people with autism or other diabilities. For example there is a farm near me, and they hire psych majors to help them build coping mechanisms, and I've heard of a movie theater near me. I know for me, I need a something to do to help with my depressive/suicidal tencies. so hopefully that could help because I know that ableist bullshit can make finding a job hard.

      Delete
  8. I would add to that "Don't question the validity of their autism diagnosis" and don't say things like "I don't think you have autism/Asperger's".

    ReplyDelete
  9. I was once told I couldn't be an aspie because I was into roleplaying, despite the fact that I have two autistic acquaintances (one of which has gone in depth with me about their conditions) who are also into such activities.

    ReplyDelete
  10. Adding on to #22:
    Don't use "autistic" as an insult. This should not have to be explained, but I see friends of mine in video game and Japanese animation communities who regularly throw that and "sperg" around.

    ReplyDelete
  11. Hmmm.... where do you draw the line on true difference of opinion. Do you just let them dominant a conversation if they simply don't agree with your side of an argument by simply shutting down the conversation or persuing what they believe is true based on what they have read over experience.. depends on what part of the spectrum they lye?

    ReplyDelete

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