Non Verbal Autism

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All people communicate but not everyone talks. Some people talk a little but not conversationally. Some people say words and phrases out loud that don’t match what they really want to say.

Sometimes I use talking words but I am still very much non verbal. Saying words out loud is not always possible or accurate for me. My pronunciation of words isn’t totally clear, and I say words in different order than most people when I say them. I can very much more fully express myself using the letter board, or Proloquo2Go.

Many times I say nonsensical things like, “Larry boy!” or “Go back to green house!” and I repeat it many times for no reason. I hear myself and think, boy, I sound ridiculous; and I wish I could stop but I have no control.

When people ask me things I know exactly what I want to say, but there is an ever-present blockade between my brain and my mouth. It is extremely frustrating as you can imagine.

Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect; with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, NO! But I couldn’t. It was horrible not to be able to defend myself.

I sincerely, altruistically, hope and pray that more autism pros like teachers and doctors will realize that autism causes major issues with getting the body to cooperate with the intentions of the brain to respond, but ability to comprehend is unaffected. This will make way for more appropriate help for autistics.

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48 thoughts on “Non Verbal Autism”

  1. Thank you for the reminder. It is hard to remember sometimes when you are trying to communicate with someone who does not respond the way you anticipate they will, that just because the response doesn’t make sense to *you* it doesn’t mean that your meaning to *them* was not understood.

    And that doesn’t just apply to autism.

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  2. This makes me so sad, especially when I consider that this is very much the reality for my son, who is Autistic and may also have verbal Dyspraxia. I think even sadder still is that I have been pushing for a verbal Dyspraxia diagnosis because 1) I’ve always believed my son has a mechanical problem with speech and 2) I want to be able to tell people that my son doesn’t speak because he is also Dyspraxic, not because he is “low functioning”. I grow so weary of having to defend my son against that cruel (not to mention inaccurate) label. I grow so weary of having to forever defend my son’s intelligence, particularly to the professionals in my son’s life who should know better. I’m so grateful to the non-verbal Autistic people like this young man, Emma, and Ido, who provide a voice for my son and hopefully, a changing view of non-verbal Autistics for the next generation of Autistic children and professionals to come. Thank you.

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    • My boyfriends son is autistic non verbal.
      I am trying to learn more about it .
      What to do and not to do .
      He seems to trust me and even though he doesn’t speak he comes to me when he is upset about something , looking for me to solve the problem . I’m hoping that’s a good sign .

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  6. Thank you! More than I want to hear from any Dr. or specialist about autism, I want to hear from those who are living it and able to communicate with us. My son is 10 and nonverbal, he has made gains in speech and was able to use simple words and a short I want sentence when prompted, he then regressed again and lost all of his speech. Occasionally he can get out a word but it is very limited and is not even able to repeat words like he could. He has had a device since he was 3, he will use it for simple I want this food or this choice on the computer but as far as any back and forth communication or expressing anything beyond that we haven’t been able to get there. I know he understands so much more than he can respond to, I would love to hear more about how you began to learn to communicate on your device. Btw if your talking about Larry boy from Veggie Tales, that is my sons very favorite and his first sentence was “I am that hero” 😃 if that’s not what your talking about just ignore that comment 😄 Thanks so much for sharing!

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  7. Thank you for the article. Do you have any specific suggestions as to trying to teach/learn a program like Proloquetogo2? We’ve been trying a similar program — but we don’t seem to be making much progress.

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    • Hi Krysta,

      My Son is 7 and Non verbal. We have tried several different options for communication including the Dynovox Maestro which for us was very hard to program and not so easy to transport. A couple years ago we decided to purchase Proloquo2go after doing much research. Proloquo2go is AMAZING!!!! It’s so easy to use and customize and I know it can grow with my Son. Once I downloaded it I was able to put it on all of our devices. He has it on his iPad and I have it on my IPad and IPhone and Dad has it on his Iphone as well. You can sync it on all devices using Dropbox so no matter what device you use the app on it will be the same. So My son is able to grab any device to tell me what he wants or needs or if something hurts or is he’s hungry. It’s such a relief to know that I don’t have to guess anymore what he needs he can tell me and I know that he feels much less anxiety knowing he can tell me what he wants and needs as well. I’m so thankful I got Proloquo2go it has changed all of our lives for the better.

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      • Wondering more about the syncing of multiple devices. we use the program for our 8 year old non verbal daughter who has CDLS. Any good way to contact you directly Laurie?

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  9. You sound super smart to me, Henry. I’m so glad you shared this post, because it makes me understand my non-verbal autistic son a lot better. Please keep posting!

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  10. Hi Henry,
    Thank you for this article. Your first-person account really carries the point across clearly and helps to understand what it’s like to be non verbal. I think everyone should read it 🙂
    I am a certified translator in Canada, and would love to translate your article into French so it can reach more people in Canada and France. Please let me know if you agree, and/or contact me through my blog (https://irmazoulane.wordpress.com/about/). Thanks!

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  11. Thank you for writing this. My son is non-verbal and four years old. It’s wonderful to read your words. I think differently about words now that I’m learning about what it feels like for people who are non-verbal.
    Thank you again.

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  12. Hi Henry. Thank you so much for your post and for reaching out. I can tell by your writing and use of language, you are brilliant and I will continue to follow you on your journey. I am a Mother of a 4 year old Autistic boy. Thank you for helping me see clearer and for understanding him better. I feel I am a better human being and a better mother since my son came into my life, and I am sure your mother feels the same about you.

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  14. Hi Henry! I don’t know if you remember me but I was one of your teachers in elementary school. I am so very proud of you and all you have accomplished. You started to learn the RPM method in my classroom and you have come so far. It is awesome that you are able to share your experiences and ideas with the world! Reading your blog helps me to see what a difference we can all make! Take care always, Mrs. Pascavis

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    • Mrs Pascavis I totally remember you and Hawthorne I loved your class. We had fun with foosball table and reading too much Arthur books. Thanks for helping me start rpm. Love, Autism Henry

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  16. Thank you so much for sharing your story. You are an inspiration and blessing to so many people. I would love to hear more of what you have to share. You can teach us verbal people to stop talking and listen better 🙂

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  18. Henry,
    Thank you so much for this blog. I have read every word of every post that you have written on your blog. You have no idea how much you have just helped me. My life will never be the same after reading your words. I have a 7 year old non verbal son with Autism. He also uses Proloquo2go. I feel that by reading your blog I will understand my Son so much more. One of the things that you said that made me burst out in tears was this………

    Doing therapy every day for years is eminent awful. It is not helpful at all. It would be more helpful to play with mom, and go on trips to the park or the zoo.

    I am going to make it my mission in life to do way more fun things with my Son such as taking him to the park and the zoo.

    You are AMAZING!!! I can’t wait to read more of your posts in the future.

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  19. Thank you for writing this. My son says things on his communication device that other people may not understand, but it makes sense to him. He is autistic, plus has language and speech problems from a brain tumor he had when he was very young. He uses prolequo2go, and Unity.

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  20. Thank you .so much Henry, I am the grandma of a 7 year old Ausitic Non Verbal grandson who I love with all my heart. He loves to swim in our pool and ride is new scooter. His smile melts my heart and he makes me laugh all the time. Henry you have helped me understand so much more about my grandson . Your an amazing young man .

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  22. Hi Henry,
    Thank you for sharing. Your story is very inspiring! I have a son that can name and label everything, but he has difficulty communicating his feelings, thoughts. I’m praying for the day that he can begin to express himself the way you do. He can label and write about where he went or what he did, but his communication is limited. There is a break down. I wish I could get him to write his thoughts the way you do. I’m at a loss and praying for a break through. Not sure how to get him to the next level, any suggestions?

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  23. Thanks for your blog it gave me hope. I have been tired thinking the past days that all what am doing for my son isn’t fruitful. But after reading this today am full of hope of the future ♥ he is still five and autism in the middle east is new. Centres here are now being established so we do not have experts or experience teachers thus it is quite a streasful experience. Please keep blogging anx explaining autism to us. Teach us whatwe do not know

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  27. Thank you for this. I am going to read it to my son, Jackson and daughter, Ferne. Jackson is 11 and Ferne is 8 years old. How did you learn to type on the computer?
    Joanne

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  28. Hello Henry,

    This is something I’ve struggled with my whole life, and something I was very afraid of for so long. When everything is going well, I can communicate verbally. It’s always been work, but I manage.

    Sometimes my brain decides that is enough with the talk and I loss my words. This always frightened me so, especially since my father threatened to have me locked away and never get out again. That was when I was younger. Autism wasn’t something anyone had heard of then, so they diagnosed me as mentally r-tarded. Very scary, and very insulting too.

    Now so many years later, I know what this is, and have an AAC app on all my devices too. It makes my life easier when my brain loses all my words.

    I just wanted to say thank you for writing this. I am a 51 year old autistic woman and it us good not to feel so alone, and not to be afraid of losing my words forever. Because my head doesn’t hurt as much when I lose my words and my doctor said that’s the point. So I’m embracing and accepting my differences better now.

    Again, thank you for writing this! Sami.

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    • Sami thank you for commenting to me I’m so happy to hear from an autistic adult. Thanks for blazing the trail. I am glad you have found an app I still need to find the best one for me. Thanks.

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      • Have no fear, you will find one Henry. I don’t know that I blazed a trail so much as lived long enough to find my truth, and a Doctor that knows what she is doing. I’m very thankful at this point in my life. It’s folks like you who are the trailblazers, having ridden out the medical community and some of the real goofyness that NT folk come up with,

        So thank you!

        Sami

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  29. Hi Brent in not sure if you will ever see this or not. Sorry I’m so late at responding to your message. I originally downloaded the Proloquo2go app on my laptop on iTunes and now I’m able to add it to any of my apple devices simply by being logged into the same iTunes email address that I used to originally download it. Every time we get a new iPhone or new iPad device all I have to do is press a button and its added. It’s super easy and by using the app called Dropbox I can transfer my sons current settings to the new device so you never have to go and program everything again on the new device you add it to. My contact is LaurieSingh@gmail.com

    Henry again thank you so much for this blog. I love reading it. You are awesome.

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  32. I had to share this again. The last paragraph is so profound. For the life of me I don’t understand why doctors/teachers/parents don’t realize this! This is not just an Autism but in our case Angelman’s which is a non-verbal syndrome.

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