The Autism Experience Challenge

You work with autistic people.
You have an autistic relative.
You are adventurous and into new experiences.

If you fall into any of these groups, my Autism Experience Challenge is for you.
Of course, I specifically invite the participation of the experts of ASHA and other organizations that have so strongly made statements about the inner experiences of nonspeakers, yet have never experienced the state of being nonspeaking themselves. Certainly, to claim to have an understanding into nonspeakers, it helps to walk in their shoes- even if just briefly, to avoid the appearance of presumptuousness.

If you are brave, let’s give it a go.

Step 1

Mark out a period of time- anywhere from 3 hours for a shortened version to 3 days for the fuller experience. You will not be allowed to speak verbally during this time, no matter how much you want to.
You must designate this time to take place when you will be around people. There is no benefit to this exercise if you will be alone the whole time. Your friends and relatives should know what you are doing prior to the exercise so they aren’t worried and can do their part in the challenge.

To be authentically true to the autistic experience I need to deny you alternative means of communication. You cannot gesture, point, write, type or show ideas on your face. To have an authentic experience, people will have to guess your needs and wants. Maybe their guesses will be wrong.
You cannot correct them. You must live with the results of their guesses.

To experience this kind of frustration and loneliness is important. You must eat with people and be physically together with people but you cannot join in their conversation at all.
You are near others, and may lean on them or hug them, but you are not part of the social interaction.

Step 2

Some of you may be ready to quit right here, but for those ready to forge on, let’s make it a bit harder.
You can start this any time by prearrangement.
Ask your friends or relatives to discuss you, your behavior and difficulties, in front of you, as if you don’t understand. They can say whatever they want, whether true or outlandishly wrong, and you can’t correct them. You must stay silent. No gestures or facial responses are permitted to show your feelings.

You should take note of how you feel.

Step 3

Every time you feel upset, maybe, for example, after hearing people discuss your behavior, or you feel excited, or perhaps bored, you must flap your hands, stomp your feet or jump up and down. These responses should begin after approximately five or more hours of just experiencing living in silence.
Tell your friends or relatives to respond each time you flap, stomp or jump with any of the following types of phrases:
All done
Hands down
Hands quiet
or
Quiet hands
No jump
Feet quiet.

Step 4

After a minimum of 6 hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, no more normal speech aimed directly to you.
They may speak normally near you when talking to each other in lively and interesting conversations and you may listen but not participate in any way in those conversations. They may speak about you in normal speech.
But if someone speaks directly to you it must now be in simplified speech and command oriented.
Wash hands
Go car
All done
Turn off

Etc.

No articles or grammar for you! This must continue until the challenge ends.

Step 5 (for the very daring, only)

I can’t induce sensory highs but I can help you simulate overloaded or intoxicated senses. Prior to the challenge, you can make a recording of intermittent noises, such as a leaf blower, a siren, a baby crying, and listen to these through headphones while you walk through a crowded mall or market. The sounds pop up randomly and unexpectedly. Several may occur in succession, or you may have none for many minutes. They can be quite loud. They may be very brief or last for several minutes.

Remember, you still can’t talk, gesture, communicate your ideas, discomfort or feelings. You can cover your ears, flap your hands or jump in public.
I grant you temporary permission.
You will be aware of the stares.

When you get home, stare at a lava lamp or another interesting undulating visual pattern for about ten minutes. Allow yourself to get intoxicated by it.
You may remove the headphones while you do that.

Step 6

Point to letters, very slowly, on a letterboard, keyboard or tablet to communicate your thoughts to someone for your final half hour of the Challenge.

Step 7

Go back to normal and think about your experiences.

In this Autism Experience Challenge I do assume that like me, and so many others with nonspeaking autism, you understand words and that the trap is your motor system.

How long could you tolerate it? Did you have to stop early? What were the hardest aspects? What new insights did you gain?

Step 8

Now for your final challenge:

Imagine your whole life like this.
Imagine never being given a means to communicate.
Imagine experts speaking out, denying your rights and invalidating your potential.
Imagine being talked to like a child.
Imagine breaking through this and then hearing experts say that what you communicate are actually someone else’s thoughts.

I invite my readers to try my Autism Experience Challenge. Let me know how it goes.

22 responses to “The Autism Experience Challenge

  1. ♥️

  2. Thank you for writing this Ido. I hope many will accept your challenge. I am interested to hear how they did.

  3. Hi. I think these are great suggestions. However, I would like to know how I can engage my son in our conversations or at least get him interested in listening to some of them. I would love to help him. Please help with some ideas. Thank you.

    • Sorry, but this sounds like, “too much work for me, can’t I make my autistic child take on the full burden of communication?”

      Do the challenge, the point is to make you go through a process that will help you gain some insight that might address your question.

      Tell your kid what it is you’re doing, ask them (in advance) to be a guide for you in this when they think they can be helpful.

    • He may be listening even if he is moving. Talk normally and assume he understands more than you currently think he does.

  4. Brilliant!! Something like this was part of my (old school) speech and language training, and we had to (pretend to) stutter for a day. It was the most eye-opening experience of my education — and this is destined to be even more eye-opening!! Thank you!!

  5. Thanks Ido, for expressing the frustrations that are faced by non verbal people who is reality have so much to say. Keep going.

  6. Aisling Jenkins

    I have fought for years for my son who has non verbal autism and Down’s syndrome. We have used supported spelling/ facilitated communication trained by one inspirational speech and language therapist. The majority of therapists continue to dismiss his communication as ‘us putting words in his mouth’ . He is an inspiration to us. We will co tinyecto use these methods and fight on his behalf. Will be taking this challenge for him.

  7. Thank you Ido for putting out this challenge. Really hope people take up this challenge to understand the experiences of a non verbal autistic person.

  8. Elizabeth Zielinski

    I have a nonspeaking teenage son who spells to communicate. As empathetic as I believe I have been to his experience, just reading this challenge gave me anxiety. I can only imagine what it will feel like to complete it. And I plan to try. Thank you, Ido, for always making me think and offering new insights with everything you write.

  9. Fantastic! I love the challenge. Every teacher in the country should give this a try before classes begin. ( especially new, younger teachers with more open minds). Keep up the good fight brother. My son, Danny, and our entire family owe you more thanks than we could ever repay.

  10. So true! I love that you are using humour to very clearly state that your needs and rights are not being met. Humour is used to great effect by many oppressed groups to share their stories. You are incredibly smart. Autistic people do get humour. The best humour comes from people who are working past oppression. #ActuallyAutistic

  11. Pingback: The Autism Experience Challenge by Ido Kedar – Art by Nicole Corrado

  12. Thank you Ido for this article! Spot on as always!

  13. Ido, you continue to advocate, so well, often and on target. Sometimes I get weary of battling a system of prejudice, disbelief, and oppression for my autistic son who also communicates with facilitated communication. I explain, teach, and re-explain! When you say it, it has power, credibility, and meaning. Thank you for your voice. With appreciation,

  14. Teresa Phillips

    I had cancer when I was three years old, in the hard palate of my mouth. My hard palate and a portion of my maxilla were removed. I couldn’t speak for three years, when my dad designed an obturator to provide support. I still have no hard palate, and some of my maxillary support is provided by titanium.

    During those three years, everyone spoke at me. Every school assumed that I had “limitations”. Every doctor presumed that I would never be “normal”. My reconstructive team said they could make me “marginally acceptable” rather than “deformed”. Gee thanks, guys.

    My grandparents read to me, and sang with me, and focused on my strength and intelligence. They were relentlessly positive.

    I became a speech therapist in my 40s, when I came to terms with the concept of “normal” as it applied to my life.

    My three non-verbal years made me a damn good listener and observer. I still get intense and trapped feelings when I am not understood, even though my speech is crisp and clear, in the manner of many speech therapists. I am literally the only SLP I have ever known who has experienced a non-verbal period. I’m sure there must be others.

    That’s all. Just wanted to share. I recommend courtesy, respect, inclusion, listening, and not making any assumptions.

  15. Ido, I can’t thank you enough for this. Every now and then I doubt myself and get tired of “well-wishing” but actually just ignorant relatives when it comes to interacting with my beautiful, smart, funny, but mostly non-verbal son.

  16. Dear Ido, your challenge to us touches me on so many levels. Certainly in regards to my work with children. But I also want to share a little story. I just can’t stop crying as I read your posts and reflect –
    My Dad died from a glioblastoma brain tumor in March 2019. In the months and weeks prior to his death, his horrible tumor kept growing and severely impacted his ability to communicate. So often we just had to guess what he wanted. As we would try to introduce new ways for him to communicate, the horrible tumor would grow and the new method wouldn’t work. We just kept trying as he became more and more trapped. I couldn’t then, and can’t now, process how frustrated he must have been especially in the last weeks. He was right there with us and had important things, and also less important things, to communicate. The speech therapist wasn’t helpful. I am so hopeful that we were respectful enough. I am so impressed by how patient Dad was with us as we tried to understand.
    Thank you for suggesting the challenge. There are many situations people live with that doing this challenge could be a pivot point to learn new perspectives. Thank you so much.

  17. Thank you! This was a great post. I needed this.

  18. Pingback: The Autism Experience Challenge — Ido in Autismland | Another Spectrum

  19. I have to admit that while I know autistic people, have worked (very briefly) with an autistic child, and consider myself to be adventurous, the very idea of taking you up on your challenge makes me almost ill. Which in turn has given me a lot to think about lol. The closest I’ve come to actually doing something like this, minus the physical reaction suggestions, was when I spent 3 months in Turkey. I lived with my family, that I didn’t know very well, with no shared language except gestures and pointing. It was incredibly frustrating. People thought I was somehow stupid because I couldn’t ask for the thing I needed or wanted. I was laughed at when I tried to speak the language because, as much as I love them, Turks are a judgmental sort. Harmlessly, but it’s true. People can fight me on it (c:

    I can’t fathom that feeling and situation being anything but temporary. Just reading through the challenge has challenged me in ways I hadn’t really thought of before and put me through a range of emotions.

    A good friend of mine has an autistic son. He’s 17. I know (and feel terrible about) the fact that I’ve definitely done to him what you describe—I’ve asked questions to his mom that should have been asked to him. I’ve simplified my asks and my expectations of him instead of giving him the full chance he deserves to tell me what he can and can’t process.

    After reading this and spending some time with it, I know I can do better.

    Thank you for the reality check.

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