What Your Child on the (Autism) Spectrum May Not Be Able to Tell You…Yet.

We attended the Autism Society of America Conference earlier this month in Pittsburgh. One of the things we quickly noticed is that a majority of the people at the conference who had “individual with autism” ribbons had crossed the original message out and wrote “Autistic”. So please don’t think we are ignoring “people first language” because of a lack of respect for the individuals, on the contrary, we are respecting the preference of the individuals at this conference. They said if “Autistic” is offensive to parents, then it is acceptable (to them) to say “on the spectrum” (which is why it is used in the title). For the remainder of this post, I’m using “Autistic” because the individuals that gave us information for this article prefer it.

We have always placed significant value on the information that adults who have speech and language difficulties tell us. We think of the young children we work with and wonder, “What will they be saying in 25 years?” The answer that quickly comes to mind is…hopefully anything they want.

There is a lot to be learned from the experiences of others who have been there before. When I knew that I was going to have a c-section with my son, I asked my mom what it was like because she had five c-sections. My sixty-ish male doctor gave me factual, well-researched, important instructions, but my mom answered the questions that I had about the actual experience. If we want to know what it is like to be an autistic child, it makes sense to ask someone who used to be an autistic child.

We had the privilege of meeting quite a few autistic, intelligent, interesting, outspoken, fun individuals. At the risk of offending anyone else we met, we gained the most – in terms of information and enjoyment – from our conversations with two individuals in particular. Kassiane and Corina graciously spent time talking to us about being autistic, going over the Speak for Yourself AAC app in detail and exploring the vocabulary, programming, and features.

Both of these women say that they did not speak as young children and still experience times when they are nonverbal. Corina said that when she is in a heightened emotional state, she is not able to speak. Kassiane said that she is not able to speak for about an hour and a half following a seizure. They say they type, text, or sign when they are not able to talk.

When we have the opportunity to ask questions of people who are nonverbal, we generally ask variations of three questions. Kassiane and Corina gave us more in depth information in a relatively short amount of time in a fascinating, I-wish-I-was-video-taping-this-conversation style. Information poured out of them, and we tried to write it down quickly, without losing the flow of the interaction. Also, anyone who has ever had a conversation with Renee and I together knows that we bounce easily between topics and stories with excitement and passion for Augmentative and Alternative Communication (AAC) and the difference it makes in someone’s life to have the ability to communicate. Now add two more conversation partners (and a very cool seizure detecting cat) who are equally as passionate about the topics of communication and autism, and you can imagine the intensity at our booth. For organizational purposes, I am writing the three questions that we are always trying to answer, but this was in no way, an interview. It was a spirited, fast-paced, intellectual, enjoyable discussion.

How did you learn to talk?

Both simultaneously answered “echolalia”. When they went on to explain, we were silent and riveted. Corina said that she would practice talking by repeating the words she had heard other people say or that she had heard on TV. She said she would do it by herself sometimes and look in the mirror so that she could practice talking and try to match the intonation and facial expressions as she practiced saying the words. So, what might be referred to as “scripting” or “delayed echolalia” was actually how she was teaching herself to communicate.

Kassiane said that she used an “echolalic re-mix” to communicate because language is a repetition of words you’ve already heard and said, but in a different order every time. She said that she would try to say a sentence that she had previously heard in a relevant situation. Once she was able to recombine the words and phrases, she was able to say what she wanted to say. She said that one of her first sentences was to a doctor who was asking her mom questions. She said, “My mom doesn’t know. She’s not me.” Of course, our conversation progressed naturally to spontaneous novel utterance generation (SNUG) and the importance of giving that same language flexibility to someone who is using AAC.

What do you think parents of a child who can’t talk should know?

There was a lot of discussion about sensory issues and “behaviors.” Corina said that she will still bang her head lightly against a wall because “it feels SO good!” She said that she doesn’t do it hard enough that it hurts because she is able to regulate the input that she needs. Kassiane added that if children are banging their head hard enough for it to hurt, that they may be having cluster headaches. She said that the pain of banging your head is not as bad as the excruciating pain of a cluster headache. They typically occur on one side of the head, around the temple and they make her eye water or dry it out. She said that she has a decreased pain sensation and that she doesn’t feel pain until it’s an “8” on the pain scale. We have had other children who had serious injuries and illnesses (infected tooth/abscess, dislocated shoulder) that were not detected until the child had to be taken to the hospital.

Kassiane also said she LOVES squeezing because “my nervous system is high strung (as she flutters her hand), and when I squeeze it, (which she does with her other hand and takes a deep breath) my whole body relaxes.” She described herself as a “deep pressure junkie” and we watched her squeeze the other hand to balance her sensory system. We noticed a few times that whatever she did to one side of her body, she would do to the other.

What vocabulary do you think is important for someone to have on his/her device?

Curse words
This was actually part of our initial conversation with Kassiane. She asked if we could put curse words in Speak for Yourself and say them correctly. We matter-of-factly said, “Of course.” She said, “Well, that’s good because if you can’t curse, then you’re not really speaking for yourself.” We agreed. We generally do not program curse words into the apps of the children we see, but we certainly don’t delete them if the students add them. I told her that my teenage son tested the pronunciation of various curse words during development, in each of the app’s voices, as soon as the app was able to speak. During a subsequent visit, after she quickly learned to program the app, she tested it for herself. In the absence of obscenities, she suggested that students should have an “angry page” with words and sentences they can use to express anger. Examples she gave (that can be written without censoring) are “Go away,” “Step on a Lego,” and “Climb a rope and let go.”

Sensory language
As we discussed above, sensory regulation is important, and Kassiane and Corina suggested having sensory language programmed. Examples include, “It’s too bright,” “It’s too loud,” “Squeeze,” “Tickle,” “Scratch,” “Rub,” and “Don’t touch me!”

Self Advocacy
During one of the presentations, Corina and Kassiane were members of a panel of autistic women, and they said that one of the parents in the audience said, “My child is not high functioning like you and doesn’t have any skills.” Kassiane said that a friend in the audience told her afterwards that when the parent said that, everyone on the panel visibly cringed and then almost ran each other over to get to the microphone. The woman who got there first said, “Please don’t ever say that again!” Kassiane came back to tell us about it because she said that we seem like people who would object to someone saying that. She is so right.

This led to a discussion about presuming competence, and giving someone using AAC quick access to language that allows him/her to advocate. For example, “I’m competent. Talk to me,” “I can hear and understand you,” and “Please don’t say that about me.”

Regarding feelings…

Part of our conversation that does not fit under any of our questions was about emotions. Frequently, when we ask about communication goals for children, feelings are on the list. Corina said that feelings are so difficult to express and that she feels things so intensely that the words are not enough to describe the emotion. She said she doesn’t understand why a feeling as big as LOVE is described in such a small, four-letter word. ANXIETY and ANGER are felt with such intensity that they essentially cause her to become nonverbal. So, she doesn’t use feeling words frequently because of their inadequacy. We could completely relate, but in the absence of better, larger, more intensely meaningful words, we conform and use the vocabulary that’s available to describe feelings. We had not even considered that we were “settling” for arbitrary language assigned to complex emotions. More importantly, we had not considered the possibility that the “feelings category” could be completely avoided by some individuals for this reason.

If you can’t tell, we thoroughly enjoyed our conversations with these women, and we are immensely thankful for their insight. If you are autistic and have additional input, we’d love to hear it! If you’d like to know more about Kassiane, she writes as part of a collaborative blog called, “We are like your child.” If you’d like to know more about Corina, follow the link to her blog. She is also a talented artist

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10 Responses to What Your Child on the (Autism) Spectrum May Not Be Able to Tell You…Yet.

  1. Mary Kay says:

    oh my goodness Heidi… so much information…I want to go to the next conference!

  2. Kiley Quinn says:

    Kassiane is one of my favorite people and is so full of good information. Thanks for sharing her thoughts.

  3. Myria says:

    I have not had a chance to try your app* so maybe you have this covered – the emotion words I find most useful are “overwhelmed,” “upset,” and “twitchy,” which are not part of the standard emotion vocabulary. Perhaps good words to add could be determined by talking to alexithymic people in particular? I know if you did a survey or questionnaire through Facebook, you would get many responses.

    *(Android version is coming back, right?)

  4. This is the first time I have read a web page written by outsiders that did not make me want to erupt in violence. Well done. However, I would also encourage you to read all of my essays about the real reason why folks insist on separationist language. They themselves might not be aware of it, but it has quite a nefarious and frankly upsetting purpose where we are concerned.

    George Orwell and Carter G. Woodson can be meshed together in order to create what I am getting at. George’s last novel was a study in how language modification can be used to enslave a populace. Carter once wrote that when you can control a man’s thoughts, you need not worry about his actions.

    Separationist language is deliberately designed to make me think of the neurology that has altered and enriched (or worsened) my experience of life compared to others as something separate to me. Something that would ideally be gotten rid of.

    Which is why I often say to people, come to my door offering a cure for diabetes or a way to prevent any further skin cancers, and you have my adoration. Come to my door offering to remove what makes me different from my abusers, and I will erupt in such anger that people miles away will feel despair.

    So-called “person first” language actually puts the person last. I have linked to an essay from a woman in a wheelchair in which she explains why it disgusts her, and I have written tens of thousands of words explaining my anger at it. Whilst I consider it bad form to put links in the text proper of a comment, my article here links to Lisa Egan’s write-up of why she refuses to use “person first” language, and why I believe it is not a matter of preference. That is a good place to start looking to get acquainted with my world.

    Again, thank you for the first article written by outsiders that has not enraged me. In years. Decades, perhaps.

    • Hi Dean,
      Always glad to avoid inciting anger and violence!
      Thank you for the article links. I appreciate any information that gives me a better understanding. The relationship of language to thoughts and actions is an interesting discussion because your language can frame attitudes and actions positively or negatively.
      We tell adults who are just beginning to use AAC with a child that if they think it will work or think it will not work, they are going to be right because it is the same basis as a self-fulfilling prophecy. They will look for the positive or the negative to prove themselves right, and that will determine a child’s success or failure. For example, when a child is first learning a device, he may go through and push buttons to see what they “say.” Someone who believes in the child will say he is “exploring” while someone who does not will say he is “stimming”. It is the difference between someone using the exploration to teach vocabulary or taking the device away and saying he is “too behavioral.” The language we use frames our view and our attitudes towards people. It’s important to make every attempt to get it right.

  5. Sarah says:

    Oh my goodness, I follow Kassiane on Tumblr and as soon as I saw her name there I started grinning ear to ear, she’s a joy.

    Thanks for this app – as an Autistic with periods of non-verbalness I will be using it a lot I think. I noticed that up there they said the android version isn’t working or something so I’ll be waiting with baited breath for such a great thing.

    In the case of feelings, I’ve found describing bodily functions more useful than say, “angry” or “anxious”. For example, “my stomach is wrong” and “my forehead feels tight” and “my shoulders are shaking” can indicate anger, and with added “I feel cold” can indicate anxiety for me. So being able to describe the feeling rather than applying a word to it has been useful for me. I usually go “I have a feeling” and my family asks “What is it?” and I describe the effects it has and they help to pinpoint it by asking what’s causing it, etc.

    Alternately I will say “I have a medical problem” and describe “my forehead feels tight and I am drowsy” that can indicate one of my migraines are coming on and I need the house to go quiet so I can rest it away (sleep and copious painkillers are the only thing that helps).

    It should note that I can usually tell the difference between a medical thing (which is what I use for all physical grievances) or emotional thing, unless the two are tied together (for example, being sick might make me more prone to anxiety), but that’s rare.

    Before I found these ways of communicating my teachers and parents and friends would get angry at me because I’d have what they considered “pointless outbursts” for “no reason”. When I started describing what I was feeling it helped us gain further understanding. Of course that wasn’t always useful while I was non-verbal, and as a result that still happened though not usually with family, but outside it was mortifying.

    I hope this information helps a little bit.

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