Monday, February 11, 2008


Yesterday, a person known to me, I’ll call her Ellen, reported that she had met a “nonverbal autistic boy” in a group she’d attended. He had seemed to understand everything that was said in the room. He had laughed at all the jokes, though he had spoken only one word during the two hour event. As she had expressed surprise, I explained, not for the first time, that yes, autistic people do tend to hear and understand conversation, much like anyone else. Ellen knows me well. We have discussed autism on many occasions. She wanted to know how anyone could be sure of someone’s understanding if that person did not speak. I talked about alternative means of communication, again, not for the first time. I talked about people I know of who write or sign or gesture or who otherwise communicate, though they do not speak.

Ellen’s next question disturbed me. This was not the first time I’d heard it. Did these people not speak by choice, or because they truly were not able? I tried to explain why “choice” is a difficult word in this context. I talked, once again, about the huge variability of people on the autism spectrum. I have told Ellen about the “autism advocate” who not so long ago stated that some adults have “chosen” to become non-speaking autistics. I was not in the mood, by this time, to further elaborate on that story, or to discuss the controversy over the NAS spot which was criticized by many for a statement made by an autistic man who prefers not to speak.

Instead, I talked about the things I had written here, in a post which I believe Ellen has read. The point I stressed was that talking is a lot of work for me, and that I understand that this is so for many if not most autistic people. Yes, I can produce speech, but not in the quantities or at the rate expected by most non-autistic persons, and not with any confidence that what I really mean is ever being heard. Isn’t my energy better spent on writing, a medium which allows me to say, with reasonable consistency, what I really mean, and allows others to understand my thoughts as well? Oh, she responded, finally seeming to understand. A strengths perspective. Yes, that’s right, I said, relieved to have this opportunity to declare the conversation finished, at least for the moment.

That was last night. Today, I happened to be at lunch with Ellen and her brother and some other family members. Ellen’s brother is not autistic, but has worked as a special education teacher for years. He knows about autistic people, you see. Still, I was more than a little surprised to hear Ellen announce to her brother that she had met a “nonverbal autistic boy” the day before. He’d seemed to understand everything people had said! Hmmm. That was what the brother said about it. Hmmm. As I listened to the story of The Boy Who Understood, I had to wonder, not for the first time, why I spend any of my energy on speaking at all.


  1. Sigh. I don't even want to know what the brother was thinking. And if "Ellen" thinks what she has discovered in this boy is the exception to some rule, then . . . sigh.

    But take heart. It may be simply that she was finally presented with a real-life *example* of a nonverbal person who shows obvious signs of awareness, whereas before she'd only encountered rhetoric declaring that such a thing is possible, and it had enough impact on her that she found it worth sharing a couple of times. Obviously the "boy" made quite an impression on her.

    So at best, she'll from this point forth think of this "boy" when somebody tries to tell her nonverbal people don't know what the hell is going on, and she'll say "Ah-ah-ah; that's not true; I once met a boy . . ."

    And at worst, she'll think the "boy" is an anomaly and not make any connection at all between him and nonverbal people who aren't so obvious about understanding stuff.

  2. Ah yes. The great "can't speak"/"won't speak" question... or, to generalise it a bit more "can't do X"/"won't do X", as it applies to all sorts of things to do with autism, including plenty of sensory-related things (like not being "able to" eat certain foods or wear certain clothes due to them inducing unbearable sensations, etc)...

    I have often said that autism blurs or even erases the distinction between "can't" and "won't"... although, i don't think that's quite the whole story, as it can work the other way as well.

    Example: a conversation i had with someone (before i identified as "autistic" myself, actually) about "savants" and their "amazing" memory skills - knowing pi to thousands of places, etc, in which i remember saying it was not that the abilities were "superhuman" - ie, something no non-autistic human being is even capable of doing - but that a neurotypical person would be incapable of wanting to use that much of their memory for such a specific, non-socially-focused thing.

    Similarly, an autistic person might be technically able, if they wanted to, to make eye contact with people and say things like "hello", "how are you", "fine thanks" on a regular basis... but they might not be capable of wanting to - and as any conscious action requires volition to do it, if you are really, totally incapable of wanting to do something, under any circumstances, you are incapable of doing it - even if you don't lack the actual physical or neurological apparatus for doing it...

    If someone would literally starve to death rather than eat a certain type of food because of the strength of their sensory aversion to it (as was the case for me as a child with quite a lot of types of food), then IMO they should be regarded as "unable" to eat it just as much as someone who is physically allergic to it.

  3. Thank you for this.

  4. Reminds me of the majority of the conversations I have "trying" explain my daughter's strengths in communication and the difficult areas. Argh. Why do I even bother some days with certain people.

  5. Your last line made me laugh! I actualy dont wonder anymore why my son dosnt speak. Maybe you have hit on a point there!

  6. sigh,

    as much as people put weight in paying attention, and 'understanding' they don't really understand or pay attention much themselves...

    I find myself explaining the same thing over and over quite frequently, or when I comment on something I've told them, they're like 'but you said...' no. I didn't, you apparently weren't paying attention (of course I don't say that to them...)

    I tend to remember more details than most people (not autistic, my son is - he just was born to parents w/ above average intelligence according to the shrinks)... and the constant repetition drives me up the wall ...

  7. There are lots of good analogies for can't speak/won't speak with other disabilities. For example, I know a woman with severe arthritis who is capable of walking with the aid of crutches for a few steps. However, the amount of exhaustion and pain involved means that she uses a wheelchair nearly all the time. Without a wheelchair she wouldn't be able to do her shopping, raise her granddaughter, go to church, go to band practice or do most of the things she enjoys.

    Similarly, I know a girl who can, technically, write with a pen. Almost legibly. At fifteen words per minute (average writing speed for someone of her age and IQ is 25-28 words per minute). In extreme pain, which gets rapidly worse and thus decreases quality and speed. She puts so much concentration into the physical act of writing that the content suffers. She can't use her very large vocabulary to the full, because every letter is painful so long words must be avoided if at all possible. Asking her to write rather than type is like the attempts made in 19th century schools to force left-handed children to write with their right hands. It is like telling a short-sighted person they don't need glasses because they can see. It's like telling someone with hayfever that they don't need antihistamines because they can breathe. It is possible for a "normal" person to walk without shoes, to drink water from cupped hands instead of a glass, to dig a latrine instead of using a flush toilet, to sleep on the ground instead of a bed. Many people have to do these things because poverty forces them to, but this is seen as an extreme injustice by those of us who can afford shoes, cups, flush toilets and beds. A few people may choose to go without these things because they have taken a vow of poverty (though even extremely ascetic monks and nuns are, I believe, usually allowedflush toilets and beds) but this is a case of deliberately enduring hardship in order to learn to live without dependance on material possessions. Few people can embrace anything so extreme. If someobody was forbidden to have shoes, a bed, cups to drink from or the use of a flush toilet, the person or institution who denied them these things would rightly be prosecuted for abuse.
    By the way, sorry for the stupidly long, tangental comment on your "tokenize me" post. Although I seem to have done the same thing again. Never mind.

  8. Oh and when I wrote:
    "If someobody was forbidden to have shoes, a bed, cups to drink from or the use of a flush toilet, the person or institution who denied them these things would rightly be prosecuted for abuse," I was only referring to when thse things were forbidden without the person's express consent. If the person in question wanted to go without these things (because of a vow of poverty or for some other reason) that's totally different.

  9. Or how can someone be sure of another's understanding if their typing OR speaking is inconsistent? That is very real for autistic individuals. Adam can type so fluidly one moment and then stall the next. He can say a word or phrase one day and then it is gone the next.

    Yesterday, someone commented that the "didn't believe" Adam was typing because he could spell "rhetoric" but not "daddy" (it came out something like daeddty). I don't if the person understood that fingers slip on the keyboard, attention digresses. Autistic communication may be inconsistent, but again, not less valid.

  10. Estee,
    Yes, I saw that on your blog. I thought your response was so perfectly polite, considering the tone of the question.

    I am so very happy for Adam!

    I suspect this is one of the most difficult aspects of autism for many people to grasp--the apparent fluctuation in abilities. I say apparent because I think that once a person really gets it, really understands how exhausting talking (or in some cases writing) can be, it becomes a lot less mysterious. Even a pro athelete cannot play a good game unless certain conditions are met (rest, proper nutrition, etc.) and could not sustain the same level of performance for eight hours as is required for two.

    One more thought: an academic type word has always been easier for me to deal with (pronounce, write, think about) than a more emotionally loaded one like "Daddy."

  11. Anonymous,

    You make some really good points here, and I don't find your comment overly long. Thanks for adding to the discussion, along with Shiva, on the can't/won't dichotomy. I have appreciated the feeback from everyone on this.

  12. Thanks for sharing the conversation with "Ellen". This subject of non-verbal or verbal is rather intriguing to me, who only learned of being on the spectrum last year as an adult.

    My first reaction was, "I have a choice? You mean, I don't have to speak if it is exhausting/painful/difficult?" I always knew typing was easier for me to organize my thoughts coherently and speaking was a trepidation to almost all people except a close few.

    So now my mind is racing with all the new possibilities of making communication easier since I have some choice in the matter.

  13. Yes, most autistics are so by choice, just as most who are gay or bi.

    /end sarcasm


  14. I choose to not wear a wool sweater, because it's excruciatingly scratchy. I choose to not lay in a bed of nails.


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