“How do I get an autistic person to X?” – You’re asking the wrong question.

I remember my fourth grade year of school, when I was about ten years old, as being one of my most difficult years in school. I had just moved schools from my local public elementary school to a magnet school a bit farther away, as we thought it would fit me better. This new school definitely was a lot better in some areas, especially for my first few years there, but it brought with it a different set of problems. My difficulty with transition and the new environment was apparently obvious in my ten-year-old self, and my teacher had no idea how to deal with me, and for this I don’t think she liked me very much.

Bison
A picture of a bison I took in South Dakota in 2014; I think it was my first time seeing one.

So, my fourth grade year we took a field trip to Rocky Mountain Arsenal National Wildlife Refuge, which is essentially a big open piece of land reserved for the native wildlife. The Refuge is most famous for its herd of American Bison, some of the purest in the nation. Going on this field trip, little ten-year-old me was super excited about seeing these animals. Bison amazed me, as they’re essentially the last of the ice age megafauna that once roamed North America. And despite living in the “natural range” of these animals, I had never seen one in person at that point.

When I get excited, I get very antsy and bouncy. As I’m autistic, I also don’t really process the whole concept of “personal space” very well, and my voice is often louder than what others would deem appropriate, especially when I’m excited. And obviously there’s my differences, often quite awkward differences, in body language. All this comes together to make for a bad situation in this story…

So, we get off the bus, and we get into our groups set up for the field trips. As I already stated, I was rather excited about this particular field trip. Apparently, while enthusiastically trying to talk to someone, I got to close to them, and “got in their face.” The details are a bit fuzzy, but essentially my teacher didn’t think this “behavior” was appropriate, and not wanting to “deal” with it, she put me back on the bus and called my parents to come pick me up. I did not possess the communicative abilities to try and explain, and even if I did this teacher would not have listened, I guarantee it. I did not see the bison that day. It was bad. She even tried to ban me from going on any future field trips, but luckily the other fourth grade teacher came to the rescue for me at our next trip (and I was fine, by the way). My teacher had decided that the best way to “stop” this behavior was to punish me. She was thinking “how can I get Quincy to stop getting in people’s faces and talking too loud” and determined the best way to “teach me a lesson” was to send me home.

This isn’t the first time someone has misread my body language this way, it actually happens all the time. But for some reason, this one sticks out the most to me. I have all kinds of stories similar to this from my fourth grade year. This teacher had decided that I was a problem student, and therefore she made no attempts to actually try to understand me, rather she was intent on stopping my “behavior.”

I am reminded of this whenever I see people on the internet asking questions about how they can get their autistic child/student to do this or that, to change this or that, to try this or that. Almost every time, the question starts with “how.” However, from experience, I think that all of these people are asking the wrong question.

In reference to an autistic person, the first question should never be “How can I get this behavior to change?” Rather, your first question should be “Why is he/she behaving this way?”

Your first question should never start with the word “how.” Too many people start by asking how they can change a “behavior,” but if you truly want to understand and effectively work with autistic people, this is the last question you should ask if you ask it at all.

Let me explain why this is the case with an example. A few weeks ago, I came across a discussion in which (presumably) a teacher was asking how she could get an autistic student to stop putting pencils in his ears. Here, she has asked the wrong question. If she would have instead stopped and asked “why is Little Johnny Autie putting pencils in his ears?” she could have come up with a few conclusions that could prove useful. Several autistic people answered with the same answer I would have given: he’s probably putting pencils in his ears because the classroom is too loud and they’re working as earplugs. I put pencils in my ears in this fashion in elementary school for exactly this reason. If this teacher would have stopped to consider the why, she could then effectively answer the how. There are multiple solutions here, such as letting the kid work in a quieter environment, providing him with earplugs/headphones, etc. By starting with asking “why?” the “how?” can be discerned and implemented in a way that is beneficial to everyone. By only focusing on the “how?” you run the risk of only making things worse, such as when my teacher jumped to a conclusion and answered the “how” question with simply sending me home.

Autism is not a random list of behaviors. There are reasons behind the things that we do, even if they aren’t obvious or understandable to neurotypical people. As such, it’s always wise to look for the why to address the how. This also plays into another important concept: that behavior is communication. This is especially true of autistic people, as we can have trouble communicating in typical ways, and as such “behavior” can play a role as an important communicator. As an example, an autistic child who bolts away from his mother upon entering the supermarket may simply be saying “no, I get sensory overload in here, I do not want to go in.” As such, in addition to your first “why” question, you should ask a “what” question: “What might be being communicated here?”

So, here’s the step-by-step:

  1. There’s a “behavior” you might find challenging. Do not make the mistake of jumping to the “how do I get this to change?”
  2. Ask why. “Why is he/she doing this?” and “What might be potentially communicated here?”
  3. Once you have the answers to these questions, then you can ask “What can I change to address this issue?” This is your answer to “How?”
  4. I would also advise that you seriously consider whether or not the “behavior” is really something that needs to change. For example, do you really need to stop your kid from rocking at the table? It’s not hurting anybody else, and it’s probably soothing to them, so what reason is there to be concerned about it. (Stimming is harmless and should not be categorized as “poor behavior.”)

“But how do I answer the why question?” you might be wondering. This can get tricky, but I’ll give you a few suggestions. First, you might try asking said autistic person. “Hey, Johnny, why are you putting pencils in your ears?” You might be surprised how much someone understands about themselves and how well they can communicate this. If this doesn’t work, because, say, they’re too young, don’t communicate well with you, or simply don’t know, your number one resource is other autistic people, especially autistic adults, because many of them know what’s going on because they did it too. There are Facebook groups and forums specifically for people to seek answers from autistic adults about their autistic children. I promise you that autistic adults will likely be able to help you a lot more than any of these self-proclaimed neurotypical “autism experts” will, because I’ll tell you from experience that they will very often be wrong, as they lack the experience and autistic mind that we have. (And, if you’ve read this far, I’d like to say thanks for listening to an autistic person. It means a lot.) As a final tip, personal experience and the Intense World Theory of Autism tells me that more often than not, your “why” is going to be sensory related.

Sad child alone
A stock photo of an upset child.

I don’t claim to be some expert on autism parenting. I’m seventeen years old, I’ve never had kids, let alone autistic kids. What I do have, however, is personal experience. I wish that some people would have stopped and asked why about me. Instead of asking “How can we get Quincy to stop chewing on his shirt, because he comes home with his shirts soaking wet every day and puts holes in them?” (true story), I wish they would have asked “Why is Quincy chewing on his shirt?” so they could learn that chewing is a way I keep myself calm and focused. I wish they would have asked “Why is Quincy having meltdowns in the classroom?” so we could work to make the environment a bit more suitable for me.

My only hope is that someone might read this and take the advice I’m giving from experience so that the autistic child in their life might have it a little better than I did. Thanks for reading this lengthier-than-usual post, I truly appreciate it.

43 thoughts on ““How do I get an autistic person to X?” – You’re asking the wrong question.

  1. Dear Quincy
    Someone did read.. I just spent my morning translating your post into Danish (I hope that’s ok)
    I work with autistic children. And I will take your message to work and ask my coworkers to read it.
    We need to learn from people who knows what it means to be autistic. So THANK YOU!!!!
    Kindest regards

    Liked by 3 people

    1. Finally, someone who understands autism the same way as I do. I have two sons on the spectrum and suspect that I might be on the spectrum too. I always say you can’t change the behaviours until you ask yourself why are they behaving in this way.

      Liked by 2 people

  2. Wow, great job, Quincy. Thank you for writing this. Our 6 year old son has Fragile x, with an autism diagnosis, and I believe this is some of the best advice we’ve heard so far. Not only that, but your ability to express yourself gives me hope for his future. Regards, Karl Lerchenfeld

    Liked by 2 people

  3. Apologies Quincy, I couldn’t find you on twitter so couldn’t tag you when sharing your article, but here are some comments to your really clear and awesome article you wrote:

    Liked by 2 people

  4. Great post! Very true in my experience as an autistic adult. Still trying to figure out how I tick & how to deal with the world. I’d also suggest determining when the behavior first appeared (if at school may need to ask parents) and if there were any changes in environment, routine etc.

    Liked by 3 people

  5. This is an absolutely amazing article!! So so helpful. My daughter (4) is autistic and I am Always trying to understand her behaviour and trying to work out what her behaviour means to best support her and you are absolutely right;Autistic adults are the fountain of knowledge on autism. They know it inside out 🙂

    Liked by 3 people

    1. Hey, Anna!
      A few ones I hear are good go-tos:
      Autism Inclusivity Group:
      https://www.facebook.com/groups/autisminclusivity/

      Respectfully Connected:
      https://m.facebook.com/respectfullyconnected/

      Parenting Autistic Children with Love and Acceptance:
      https://m.facebook.com/ParentingAutisticChildrenWithLoveAcceptance/

      Ask me, I’m autistic:
      https://m.facebook.com/groups/askautistics/?ref=group_header&view=group

      I don’t have any specific experience with any of these, but I hear they’re good places to ask “why?”

      Thanks for reading!

      Liked by 2 people

  6. Quincy, I loved your article. Many in my family are autistic and as a result I went into the Special Ed field to better understand and help my family. I loved your explanations–you are a very good writer. I wish that several years ago I could have had many conversations with you to help me understand my kids and grandchildren. I am understanding much more now and do not fear autism anymore. I see the grand things these kids, and you, are able to do and communicate. The talents and abilities can be astounding. And understanding the why can open the world for any of us – in or out of the autism spectrum. Thank you again. I think your article should be part of the college curriculum wherever teachers study SPED, and available as a resource for all parents of all children, too.
    Thanks again. Please write more and more. Publish your books and promote yourself in the academic world as you write books to help us understand.
    Linda Ripplinger

    Liked by 3 people

  7. To Quincy and the investigators up here:

    [and I’m sorry I wasn’t able to look at the blog yesterday or the day before].

    “A why can stand almost any how” – especially this why or these whys!

    Another reason Johnny Autie put their pencils in their ears – probably because they had been told Q-tips or fingers were not acceptable or they had short nails.

    Also another point about direct versus indirect inquiry/enquiry.

    Many teachers are trained in all sorts of inquiry methods for learning about themselves, other people and their subject knowledge.

    Do you learn more from direct exposure or indirect/incidental exposure?

    Maybe make it a statement or a comment – like “I wonder” …

    So if you pick up that this is a communicative response to *excitement* or *agitation* or any of those related feelings …

    I think also the “how” needs to be about *you* – how you would react in this circumstance with the information you now have or are learning.

    And I wonder, too, if you felt vibrations through the pencils, Quincy? [it might have been an incomplete auditory blocker].

    And I think of someone else who was a chewer – Thomas McKean.

    Bison are amazing megafauna!

    Liked by 1 person

    1. No, they’re not effective earplugs at all. It just seemed like a logical thing to try, I guess? I don’t remember exactly why, but I remember trying it in an attempt to block out noise. I also used to put pencils in my ears as a sensory seeking thing. Sometimes I’d use the sharp end for that and just gently run it around the outside of my external auditory meatus or slightly inside my ear canal, which now that I think about was kind of dangerous given my motor skills.

      Like

      1. Quincy:

        I’d wondered if you used the sharp end [of the [pencil], Quincy, and what that was for.

        Yeah, if the pencil had remained stuck.

        And the pencil was just *there*.

        Now I know about the meatus …

        Also – did you ever do a reconnaissance mission around your environment for things which could be used?

        Someone has a good sensory kit somewhere:

        https://boren.blog/2018/11/09/every-day-coping-whats-in-your-sensory-kit-askingautistics/

        So if someone found that sponges were good for blocking noise out, they could try a foam kit.

        [and, yes, #AskingAutistics is a thing on Twitter, Quincy].

        And now I am reading about Ryan and how he uses his hat.

        So glad you finally saw bison in South Dakota.

        Like

  8. Thank you for this refreshing perspective Quincy.
    I have an autistic son that is speech delayed and a lot of the time his behaviours are due to frustration that he can’t communicate his needs.
    I have sent this to his tutors so that this can enlighten them.

    Liked by 2 people

  9. Quincy,
    I’m actually taking your article into my meeting today with my son’s 7th grade teacher. She spends a lot of her time telling him to stop, just because she doesn’t understand Autism. I am sure your article with help educate her.

    Liked by 3 people

  10. Hi Quincy,

    My name is Siena. I’m a 16-year old autism advocate and anti-bullying campaigner. I’m autistic, dyslexic, dyspraxic and have ADHD. I absolutely LOVED your article. I can very much relate to being misunderstood. I was wondering if you would be willing to allow me to post your post as a guest feature on my website http://www.QLMentoring.com It’s a website I created when I was 13 to mentor and support autistic kids and kids with learning differences. If you are interested please email me on Siena@qlmentoring.comand follow me on Twitter at @QLMentoring

    – all the way from London, England

    PS I hope you got to see the bison.

    Liked by 2 people

    1. Hi, Siena,
      Yes, you are certainly welcome to share this post! Please do, and thank you so much for doing so!

      I checked out your site, and I like it a lot! I’ve sent you an email (or am about to as of writing this comment), so check there as well!

      All the best,
      Quincy

      Like

  11. Thank you for this. As a mom of an autistic teen, thanks for this. A story that mirrors what you are saying: Back when my son was in first grade, he started out of the blue getting VERY concerned about making sure he went to the bathroom before he went to the bus stop. To the point where he would want to run home from the bus stop right before the bus came to make sure he’d gone. I got curious, and went to see his teacher. I asked her if she’d noticed anything funny about my son and the bathroom. “Well, I don’t know why he’d have a problem,” she said. “We have a bathroom right here in the classroom. He should be able to go whenever he likes.” I asked to see the bathroom, and when I saw it, I instantly knew what the issue was — it was an automatic sensor activated toilet. Viewed from the perspective of my son, he was expected to sit on this thing with a bare bottom and engage in a very vulnerable behavior (relieving himself), and without warning, it would suddenly whoosh and flush very loudly. That is pretty much the ninth circle of hell for a kid with sensory issues. I had the teacher show him how to cover the sensor with his hand so that he could control when it flushed. He never had an issue again. I think you are incredibly correct, and my advice to parents is that when there’s a behavior that’s worrying you, try and see the world through your kid’s eyes, and very often the “why” will be completely obvious, as will the solution.

    Liked by 3 people

  12. Hi Quincy,
    Great article. My 8 yr old son is high functioning Autistic/ADHD. He’s an amazing little boy with So much compassion for others. I wouldn’t trade him for anything.
    My question is stimming. He will pick at his fingers til he gets hang nails that bleed. Any recommendations?

    Liked by 1 person

    1. Hi, Rochel,
      Unless the hang nails are really bothering him or they’re bleeding so often that they’re at risk of infection or something like that, I’d just leave it alone. Stimming isn’t a bad thing, and more often than not it’s hard on autistic people to stop their stims because it’s what’s helping us process the world.

      If it’s bothering him or is becoming a serious problem, there are a number of pocket size toys you can try offering him to fidget with instead of his nails. Stimstastic.co sells incredibly affordable stim toys. The site aims at selling to autistic adults and teenagers, but most of the products are 100% usable by children.

      -Quincy

      Like

  13. Great article. I am a very big proponent of the “Why?” — Not only for the reasons you stated, but I also just really enjoy learning in general, I have lots of “Why?” for anything anyone does. Its just interesting to learn and Autism fascinates me. One of my favorites is that in the most recent Predator — the predator race sees autistic humans as the next evolutionary step and want to take this mutation and splice it into their own DNA.

    Anyway, to the point of the post, I have a 12yo autistic son with ADHD and OCD. He has triggers during movies that he simply can’t explain. Something will occur in a movie and he has to cover his ears, close his eyes and then hum very loudly. And there’s often no pattern to whats happening in the movie. The most common patterns we’ve been able to decipher is any ‘mushy’ scene involving affection (kissing, hugging, talking about love, etc) and when CGI animated characters are mixed with live action (example: Who framed Roger Rabbit?) — but even still, there will be some movies where these mentioned examples DON’T bother him as well. And there’s other movies that don’t have either mentioned examples and bother him anyway. We’ve tried sitting down with him and working through any rational that could explain it so we can pick movies that don’t trigger him, but neither he or anyone else has been able to find a reason its happening.

    Thoughts?

    Liked by 1 person

    1. Hi, Nick.
      I think its pretty clear he just gets uncomfortable with certain parts of certain movies and he’s trying to “block them out” by closing his eyes, covering his ears, and humming so he can’t hear any of what’s going on. But I think you already knew that. Everyone has things that make them uncomfortable, but autistic people often feel feelings of discomfort like that much more intensely, so that emotion can become very overwhelming. I bet lots of people have trouble pinpointing exactly what makes them uncomfortable, and given that we autistics basically suck at identifying what’s going on with us, this makes it even more difficult. This probably wasn’t super helpful, but that’s all I can say without knowing your son.

      And I didn’t know that about the new Predator… I’ll have to look into it, but I’m always overtly cynical of movies that have anything to do with autism, because more often than not it’s done terribly.
      -Quincy

      Like

  14. Thank you, Quincy, for articulating it so much better than I could. My ASD/SPD 10-year-old son has been having a rough time at school recently.

    Do you mind if I share this? I’d like to send it to some of the teachers and paras who work with my son and if it’s okay with you, put it up on my own blog –– http://avoidingthesnarl.blogspot.com –– with full credit, of course. Maybe it’ll help.

    –Brian

    Liked by 2 people

  15. What a fantastic article, you have really hit the nail on the head. I am the father of 3 kids with High Functioning Autism and this along with the question “what is the autism and what is poor behaviour?” is a frustrating concept that people struggle with.

    Liked by 1 person

  16. Fantastic piece Quincy, you write beautifully. Thank you for advocating so well for us. I’m autistic, as are both of my kids.

    I hope it’s OK if I ask you a question? If you haven’t the time to answer, I understand, but if anyone else has any suggestions they’d be greatly appreciated. As an adult, I have really good access to peer support and engagement, especially online. My kids are not old enough yet to have their own accounts on social media platforms, but they’re at an age where they’d like to start to engage with other kids online, or read about other autistic kids’ experiences. And whilst I’m in a lot of autistic groups on facebook, I haven’t found many resources designed for autistic kids by autistic kids, or where autistic kids can interact. Do you know of anything that might be a good starting point?

    Also, did you ever get to see bisons in the wild? I really hope that you did.

    Liked by 2 people

    1. Hey, Susie!
      Unfortunately, I don’t know of any good online resources for autistic kids because, as you said, kids aren’t typically online like adults and teenagers are. I know of a few for teenagers and a bunch for adults, but none specifically for kids.

      Any sort of autism social/support groups for kids are going to be run by local organizations it seems, and usually they have some sort of “group therapy” overtones rather than being just for the sake of engaging with other autistic kids… And of course these aren’t designed for autistic kids by autistic kids, they’re designed by whatever therapist/parent started the program, haha.

      When I was in middle school I was part of a group that met over lunch/recess one day a week. It was disguised as a “club” social sort of thing for fun, but in reality it was a therapy/social skills training thing for special needs kids. In addition to myself there were a few other autistic kids, someone with severe ADHD, and a couple others who I don’t know if they had an officially diagnosed disability at all, they just had social problems. We’d come in and eat pizza and play a game (usually Jenga) and talk about stuff. It was fun. We called ourselves the “Pizza Gamers.” That’s about the only good experience I got with a group like that, and even that one had therapy overtones to it.

      I would’ve loved it a few years ago if there was a group like that online. Maybe you guys should start one! Everything has to start with somebody, why not make it you? You can email me at qhan5445@gmail.com if you have any other questions.

      I have a lot of stories from when I was a kid that I might share at some point! I had such an… *interesting* childhood.

      And yes, I did finally manage to track down a herd of bison. The first image in the post was taken by me in 2014 at Wind Cave National Park in South Dakota. It was a big bull, he came right up behind our car. It was a super cool one to see one in the wild for the first time. Bison were almost hunted to extinction around a century ago (there were only a couple dozen left at around the time of WWI I think). The National Parks saved them, and today that’s about the only place you can find them. Each National Park and wildlife refuge on the Great Plains has its own bison herd, but they’re still hard to track down.

      Like

  17. Dear Quincy!
    Wow! Thank you for your article, so personal, so very true and helpful! (I have tears in my eyes as my 6-year old autistic boy has the same challenges as you described with excitement and personal space especially!)
    It’s not the first time I hear this theory of asking the ‘why’ question. There are a lot of specialists who think and act similar, by asking ‘why’ i.e. Barry Pizzant ‘Uniquely human’ – excellent book and very well recommended xx

    Liked by 2 people

  18. hi quincy………
    fabulous story… thanku so much for writing it… putting it out there…
    i’m 29 and aspie and ADD and dyslexic……. went through all that ur talking about many years ago….
    think i got an easier ride because i’m a girl and was very academic…
    and… dont know why but the boys seem to bounce more..hahahahah
    yes…. it seems so obvious to ask WHY… which could actually be applied to almost everything in life before we reflex…
    very good xx

    Liked by 1 person

  19. I read this to my eleven-year-old. We had a great conversation about self-advocacy as he heads into middle school next year! Thank you for a fantastic piece.

    Liked by 2 people

  20. Thanks Quincy, I absolutely loved this articule, I’m pretty new to autism ans I’m on the mission to find any info that can help my liltte boys go thru their lives as best and stressless as possible. I will definitely use this information! Once again thank you 🙂

    Liked by 2 people

  21. Quincy, you are an excellent writer and have written an eloquent piece. I am a speech-pathologist who works with many children and some teens on the spectrum. I would love to share your article with many of the parents of the children I work with both to help them better understand how to help their children and to give them some insight into the future possibilities for their children as many or most of them do not know older autistic individuals. Thank you for writing this piece. Thanks also for the information on Facebook groups. I will share that with the parents of my kiddos as well!

    Liked by 2 people

  22. Dear Quincy,
    Thank you so much for writing this. It brought tears to my eyes as I reflected on my 16 year old son and saw how unfair we have been to him, just wanting him to change. The article is excellent! So much advice that I never really got from all the books I read.
    I hope you will keep writing so we can see the world through your eyes and become better people in understanding autism. I am reading from Germany. So glad that someone posted it , in our Facebook group. Thanks so much, you have really opened my eyes.

    Liked by 3 people

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