Unable to Speak Does Not Mean Unable to Think

*Emma gave me her permission to write about this.

“How old is she?” a stranger asked the other day as Richard, Emma and I searched the grocery store shelves for Emma’s favorite jam.  Emma was bounding back and forth between where Richard and I were standing peering at the shelf where her jam is usually located, to the dairy case, twirling her string and saying things like, “but where is it?  I don’t know!  It’s gone!  Somebody took it.  You threw it! Aw sweetheart…”

The strange man then observed, “She’s acting like a young child.”

My first reaction was to move Emma away from this person so she wouldn’t hear any more of his words.  My second reaction was to go over to the man and say, “You know, my daughter understands everything you’re saying.”

“I wasn’t trying to be rude,” came the stranger’s reply.

“Yes, but in fact you were,” was my knee-jerk response before walking away.  *I’m not proud of this and I know this was an opportunity for a “teaching moment” but I didn’t have it in me.*

Later, Emma and I talked about what happened.  Emma told me it hurts her feelings when people do this – talk about her and say things about her as though she couldn’t hear them, or doesn’t understand everything they’re saying.

I want to disappear when people talk about me.“  Emma wrote to Soma last September.  I wrote about that session in more detail ‘here.’

People, usually, do not mean to be rude, they do not mean to say hurtful things about my daughter in front of her, in fact people do not think about what they’re saying a great deal of the time.  As my daughter does not protest or respond when they talk about her in front of her, people assume she doesn’t want to or cannot understand.  It doesn’t occur to them that she doesn’t respond because the words she’d like to say do not come out of her mouth in the way she intends.  Until Emma was able to write her thoughts, people (including us) believed what they thought they were seeing, even though what they thought they were seeing was completely incorrect.  In cases like my daughter – seeing is NOT believing.

When people do not speak, they are often viewed as not being able to comprehend things said.  People come to the conclusion that if you cannot say what you mean, you must not want to, or you are unable to understand what others are saying.  There’s a false logic at work here.  Particularly when it comes to Autistic people.  When someone is unable to speak, cannot say what is in their mind, is unable to voice their ideas, thoughts and opinions, it does not then follow that they do not have ideas, thoughts and opinions that they would like to express.

Emma ~ 2003

Emma ~ 2003

43 responses to “Unable to Speak Does Not Mean Unable to Think

  1. This.
    So frustrating! Like the time some kid in Sunday school – of all places – loudly asked “what’s wrong with Nathan’s brain?”. Or my all time not favorite, when my brother commented to my 3 year old daughter when my 4 year old son walked by, “there’s the person you’re going to have to take care of for the rest of your life.”. I can excuse the – also four year old – with the brain question. His mom did answer his question with “NOTHING is wrong with his brain” and was suitably embarrassed. But since when do we write off ANY four year old as unable to care for themselves later in life and assume that it is their siblings job to be their caregiver? What’s wrong with HIS brain?

    • Wow! It is horrible to witness and hear these thoughtless comments, even more heinous is to be the subject of them. Honestly, I do not know how my daughter copes with all of it, particularly as people do this ALL the time… literally every single day of her life, she has to hear this sort of thing from people all around her…

      • I agree with the other comments that what you did was a teachable moment. That guy will probably remember the incident. Maybe he will even learn from it

  2. Yes, what you said WAS a teaching moment. Maybe not a *gracious* one, but a teaching moment. Think of all the times you have learned something from someone who said something that seemed rude and you thought about what they might have meant. I have had people jump in and “talk for me” when I could not get the words out fast enough. It’s wrong.

    • I didn’t feel badly at the time, in fact I congratulated myself on my restraint! The man WAS rude, but afterward I did think, gosh, maybe I could have been nicer about it, even though I didn’t FEEL nice, in fact I felt really angry and upset that Emma had to hear him.

  3. It frustrates me that my happy go lucky little boy will be subjected to this kind of treatment as he gets older and becomes more obvious. All I can do is hope that he has the foundation in place to be as forgiving as Emma and to know that the people who matter most know what he is truly capable of and believe in him. Might be a culture shock when he moves to regular school that everyone doesn’t think that way about him (and unfortunately I’m sure he has already been subjected to it and I just don’t know) but I’d rather that shock tempered by the foundation we’re creating now, than what many have had to endure…the eventual shock of finding those first people who do see past the surface.

  4. Well you did a lot better than I would have, if I’d kept talking to him. I was literally blown away by the sack on this guy to just walk up and ask that question and then have the even bigger sack to make his “age” comment. I’m glad you told him off–without a single curse word! What. A. Dick.

  5. I wish more people would behave like young children. The world would be a better place, indeed:) I am so sorry you feel you need to defend perfect Emma. I am sorry the world does not understand, although many understand much more, because of you. I tried to imagined. I tried to imagine I was there, and what I would do, to rescue you from the hurt. I would have jumped, with much glee, back and forth, jump like Em, with Em, and done a short scriptingish thingie, looking straight in his eye, and said, “Yes! Isn’t it marvelous? Emma is the most perfect person I know. Thank you for noticing”. ❤

  6. My daughter Brooke, now 20yrs.old has been not only talked about in front of but practically invisible to the point of caregivers not even taking care of her. She is basically nonverbal, so she would sit at daycare and read books all day. When she would come home with horrendous bruises or bite marks no one had noticed it even happened. Two separate day cares let her play in fire ant beds to the tune of about 50 bites. She escaped our dearest babysitter at age 2 and was hit by a car. Because she quit crying they thought she was ok, but they took her to urgent care just in case, but urgent care refused to treat her because they were not guardians but urgent care did look at her and say that she must be okay because she wasn’t crying. When I finally got to her; we went straight to the hospital and she had a broken collar bone and a bruised back where they found black rubber on her diaper rim and the bruises were that low, so we had to have her kidneys checked. The hospital called the police and said it was a hit and run(not exactly) just no one was paying attention to her injuries.
    Brooke seems to lack the affect to show she is upset but over the years of observation, I can tell it bothers her to be talked about, but I used to lash out at people and now I try to control myself if nothing else for her sake. A man told me that Brooke needed to stop running on the beach(granted it was sort of in circles) and not to close but in front of his space. I was hysterical and when my husband found out he probably would have been arrested way back then. We have both learned to show a little more restraint as we have aged. Going to jail or losing our religion over other peoples ignorance is not worth it. I just now a days tell Brooke that it is the other person’s problem and stupidity. I do usually have a little comment for the person if nothing more to tell them how rude they were. Brooke’s sister will not even give them the time of day if they are just staring, but if they say something she will lash into them. She is 23yrs. Old and attractive and no one talks about her sister and gets away with it.:-)
    Diane(Brooke’s Mom)

  7. Dear Ariane and Emma. I am so sorry this happened and continues to happen. Emma has more common sense and sensitivity that so many adults like that man. He is the one who needs to learn to behave.
    Ariane, what you did in my book was a teachable moment. You told someone who was being rude that he was rude and you called him on it. Too often people behave this way, are rude, and then excuse themselves with the “didn’t mean to be” nonsense. And too often they get away with it. They play the victim when someone gets angry at their behavior. Well, the only problem there was him, and good for you for calling him on it. To explain anything, especially about Emma, I feel would only encourage that kind of asinine behavior. A grown adult should know better. What he did was wrong and rude and you told him so. There is his lesson.

    Hugs to you and Emma.

  8. Emma is beautiful. I am so sorry that this continues to happen.

  9. What exactly DID he mean to be? That’s what I want to know, why do people say anything at all? At what point was it necessary for him to speak to you about Emma? Emma angel don’t let this ignorance make you feel defeated in anyway, you are a pure angel.

  10. Stephanie James

    I am betting some day (maybe soon) Emma will tell you how grateful she is for all the times you have stood up for her, and knowing you will continue to do so. When children know their parents have their backs they soar – and that is what she is doing now, as evidenced by her writings.

  11. I love Nick’s comment. People never cease to amaze. One day as I took some of my students out for a community outing to a local store a women came up to me and said “It’s a shame you let these kinds of people out in public” and I said “I could say the same about you!” Unbelievable! My assistant grabbed my arm and tugged me to leave the conversation. She said she had to get me out of there because she thought my head was going to explode or I was going to punch her in the face. I would not have but boy did I want to! I’m sorry our kids have to endure this kind of pure ignorance. It’s so upsetting. I agree with Richard. What. A. DICK!

  12. We face this all the time. Because my daughter cannot verbally speak, people talk loud as if they think she is deaf. They have asked if she is blind. They ask how old she is and assume she is 12 since she is youthful looking (She’s 28). They call her baby names like Kimmy and talk to her as if she is a young child. They say things personal or hurtful things in front of her as if she cannot hear.or understand or has no feelings. However, one of the hardest things for me and Kim is when folks speak to her or ask her a question, but walk away or talk to someone else before she has a chance to type out her response. I try to focus on the good people out there who treat Kim with kindness and believe in her abilities—like the 80+ who came to her recent book launch. I am thinking I need to train more young people to assist Kim in communication because her dad and I will not always be there. I cringe at the thought of her not being able to communicate and let people know how smart she is. Kim says, “When people make false assumptions about my intelligence, I am wondering if the are not intelligent. Ask a mom, but don’t ask the person standing there. I feel nonexistent.”

  13. My son is almost seven and very verbal and communicates pretty well. This doesn’t stop people from saying the same things to me. I’ve gotten to the point where when he is acting like a train (his stim). He walks in a straight line and when someone is in front of him if I haven’t gotten there fast enough instead of going around them he will toot loudly at them. I would either get people who would laugh and move or get those evil looks. I used to explain why to the people with evil looks. Like I had to apologize for him. I feel a lot of guilt about that. Today we went to the zoo. As he stimmed I smiled. He was in seventh heaven and I smiled at those that gave us the evil eye. It felt good to not shame my son.

  14. booksonaspergersyndrome

    Emma is so lucky to have a mama bear like you, lol. my parents told me it was my fault every time i was bullied, for not making friends.
    the way Emma sees what she wants to say and the way the words come out aren’t the same. i also had a hard time expressing myself as a child, although i was always verbal. talking could be exhausting because the words wouldnt come out right, although i had just the right images in my head. it’s frustrating.
    people can be very ignorant, especially since Emma is in no position to defend herself. but there are two ways to be ignorant. people can be deliberately rude in a provocative manner just to see how far they can get, bullies. this is unforgiveable, and those people are bastards. but then people can be ignorant not deliberately and not know they hurt someone’s feelings. they just need to understand.
    it seems people arent aware enough of what autism is, and some people simply have no idea how to act around a non-verbal person. this world needs a huge dose of education. honestly, people dont know the first thing about autism, except for the myths they all heard from the media that protrayed us in the worst possible manner.
    Emma seems a very sensitive child. it’s enough struggle for her without people embarrassing her. he’s a grownup and she’s a child, and he really should know better. maybe you should’ve told him he acts like a very young child himself. it’s toddlers who speak in front of people as if they’re not there.
    i really think they should teach more awareness of autism/down syndrome/bipolar/schizophrenia/tourette in school, as young as possible. that includes what you should and should’nt say and do in order not to hurt people’s feeling and make them feel as if they want to disappear.

  15. We can’t control what other people do, only how we choose to react or not.
    Our daughter is 40. Most people are extremely kind. Occasionally some people are rude or thoughtless. I’ve found that it’s a waste of energy to get upset about it. I’d rather spend my energy enjoying Katrina, and helping her. A sense of humor helps a lot too 🙂

  16. Very good thoughts, Marie. You are right that most people are kind. Even the ones who do say hurtful things are for the most part not intending to be hurtful; they are just curious. Kim and I just try to educate others. It just gets tiring sometimes and Kim would like people to address her and listen to her rather than deferring to me. Probably that is partly my fault as it is easier and quicker for me to answer than get out the communication board or device for Kim to answer. Most people don’t have the patience to wait for her. Often if I see it’s an educational moment, I will ask Kim if she wants me to explain or her. If she can tell time is a constraint, she will type “you”.

  17. The man seemed a lot like my grandfather, who used to hurt me terribly–but now that I think back, he was really unschooled, and did not know how to formulate his thoughts–and he was curious and trying to make conversation. One time I got a ride the 400 miles with two other people who had to do something in the area, and we dropped the other gal off, so it was just me and this guy who visited. The first thing my grandfather asked is if I was having sex with this man! ? I think he really meant did we have a relationship, or did we even know eachother? But he has said some cruel things also, such as “I can tell you don’t have God in your heart” because I cannot be touched.

    In the fourth grade I had a teacher who knew I was brilliant (she had seen the IQ scores) and she was going to shake me out of my shyness–but every time I turned around, she was talking about me, or rather complaining to everyone, that I didn’t talk–right in front of me. She put me on the newspaper, she was going to make me read out loud to the second graders (whew–that never came to pass) and the pressure that built up inside of me waiting for more of that spotlight on my disability was incredible. It’s amazing I didn’t crack open…oh that’s right, I did years later. Oh well. With all that pressure from everyone around me, yes I wanted to go live in the bushes, and never been seen much less heard…and I did, until I was caught. And what happened after that was even worse.

    • ((Bev)) I’ve responded with a couple of comments, all of which I’ve deleted because they do not do your words or the experiences you had to endure, justice. I realize there’s actually nothing I can say that will convey what I feel as I read your words. But I can tell you that I hear you and I hate that this was done to you.

  18. Emma is so brave to face this every day, but her bravery and allowing you to share her story and words is not wasted. I met a mum this week whose son has not yet found his voice, I told her about Emma and asked her to read your blog and see how much children can understand even when they don’t speak. Her eyes light up with hope.
    Thank you Emma x

  19. Thanks for posting this. I can relate. I am verbal most of the time, but appear much younger than I am due tomy autism. Especially w hen I was a child, strangers used to talk about me in front of me and not realize I understood. Now, people often demand i speak their language because they see I’m an adult. I’ve aalso had people (police for example) ask whether I had a card with my name on it. Now back then I was 18, still undiagnosed for autism, and deeply ashamed because I could communicate my name. Now I’m considering getting an autism card (which are available with key points on autism on it, also useful for more verbal autistics) when I go live independently or in the community.

  20. Pingback: Lørdagslinks | Autismetanken

  21. Poor lil momma. I can imagine how hard that must be for her.

  22. It happens to me still but all the time as a child till growing up it wasn’t till my 30 when for the first time I did a small gust speaking at autism fund rasir that was first on my things to say I say I hated when teacher dr therhist family other would talk about me like I wasn’t there it cuse me angizty an proubly behaviors they didn’t like in my head wanted to say font talk about me .it didn’t even matter if it was nice I say never talk in front of a child you don’t no if they understand or not .it happens even now at times .i carry a card with me yo show an if I catch someone looking or talking about me .not allways aweare of it but when I am sometimes if I can think I might say .oh do you no me .if they say no
    I say oh I noticed you looking or talking about me snaps the potlincess back .now I’m more verble .but other just think we don’t understand or I don’t no what it happens to some of my friends with cp I have a few friends who can’t talk becuse of there cp but they are 10 x smarter then some of those play heads that have to take care of them lol

  23. Reblogged this on includedbygrace and commented:
    I love how Emma opens up our understanding about what it really means to communicate. This has real implications for us in the church too. More about that in another blog – but for now enjoy, learn and sign up to Emma’s Hope Book for a great read.

  24. Pingback: Markierungen 08/02/2014 | Snippets

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