Seeing But Unable to Believe

When some people hear that my daughter is Autistic they see a beautiful blonde haired girl with no noticeable physical impairments.  They see a pre-teen who has terrific eye contact.  They see someone who is happy and playful and who laughs often and with abandon.  They see someone who loves loud music, a good party and will grab hold of a microphone if given the opportunity.  They see someone who obviously loves to perform in front of an audience.  She doesn’t fit their concept of autism so they assume the diagnosis must be wrong.  They say things like,  “But I never would have known if you hadn’t said something.”

When it becomes clear that she cannot carry on a conversation with them, but demonstrates her intelligence by typing something with lots of insights and wisdom, they see a doting mother who is supporting her daughter’s arm or holding on to the other end of a pole and they assume it is all a manipulation.  They decide it is me who is writing these things, “putting words into her mouth”.  After all my daughter cannot carry on a conversation, how could she possibly be writing such beautiful words?  Later, when I am no longer present they might say, “Poor thing, she’s deluding herself about her daughter, of course she would, how could she not?  It would be giving up all hope to do otherwise.”

In our field, assumptions about labeled people are so deeply rooted that we tend to think they are facts.  They are not – they are only shared beliefs.” ~ Autism: Sensory-Movement Differences and Diversity by Martha R. Leary and Anne M. Donnellan

I explain that my daughter is typing these things, but needs support to do so, without that support, which is in the form of resistance, she will impulsively revert to her favorite scripts, and they think to themselves – that doesn’t make sense.  How is that possible?  She can type independently now, why don’t they just leave her alone and let her type what she wants?  If she can’t type these things independently, it must not be coming from her.  Her mom must be writing those things for her daughter.

I then talk about how my daughter is doing math, multiplication and division (in her head) without any formal training and they think – well, that simply isn’t  possible.  That can’t be.  They look to see if my daughter is somehow being manipulated, prompted, even though she is not being touched.  When I state that my daughter is reading faster than I can, they wonder – but how can she really know that for sure?  When Emma then obviously passes reading comprehension multiple choice tests, they think – well, but it’s just a coincidence, after all it IS multiple choice, that’s much easier than if she had to write an essay.  Those who do believe, assume she must be the exception.  They say things like, “But my child/the child I work with can’t possibly do that. You’re so lucky.  Your daughter is very, very special.”  They place my child into a little file in their mind.  A file entitled –  anomaly.

When you have enough exceptions you have to start questioning the legitimacy of the rule, the assumptions, and the paradigm.” ~ Speechless by Rosemary Crossley.

I have interviewed  a great many non-speaking Autistic people and published our conversations here and on the Huffington Post.  I have an entire page on this blog devoted to Resources, the first list is of all the blogs and writings of non-speaking Autistics that I know of, but there are a great many more that I do not know about.  Even so, people will write about how those non-speakers didn’t really write their own words or, conversely, they say –  isn’t it wonderful that these individuals are so amazing and an inspiration, but they are exceptional, they are not like my non-speaking child, or the children I teach, or the children I work with or…  Perhaps they are right, but what if they are wrong?

I would rather have my daughter surrounded by people who believe her capable than around those who do not.

Ariane Zurcher, Amy Sequenzia and Ibby Grace at the ICI Conference ~ A conference dedicated to accommodating those who do not speak

Me, Amy & Ib

62 responses to “Seeing But Unable to Believe

  1. Once again, you have nailed it! I can’t thank you enough for helping to raise awareness and understanding!

  2. If someone assumed we were incapable of the things we can do unless we proved it to them and performed? How awful would that make us feel. You are doing an amazing job, mama.

    • This is something I think about often as I am terrible on both written and oral tests (aka interviews). Someone will ask me a question, such as – how old are you? If I am nervous I cannot give them my age. This happens with many questions that I certainly know the answers to and that seem obvious, but my mind goes completely blank.

  3. Forge ahead…you are doing an awesome job and I am happy for your family.
    I tried proloquo, but stimming off of sound and impulse button pushing got in the way big time. Can you explain in detail how you apply the resistance. That is the first time I have heard that description and having lived through trying to use a device I said “AHA” when I read that. Thanks.

  4. I’ve often wondered about the support that some need to type – solely from the perspective of a mom who might try this with her child when he’s older and in the gentlest of tones….. Not that you need to justify anything to non-believers of course. My question is does the supporter need to look at what is being typed? I’ve wondered why they don’t look at something else so as to be sure their subconscious isn’t affecting the typing?

    • To Canucks Mama: As I see it, part of my role as a facilitator is to keep the person focused and on track. it’s all too easy to get “off track” when hitting the keys and I usually recommend stopping them if they type three or four consonants In a row or anything else that doesn’t seem to be making sense. At that point I gently suggest that I don’t understand – could they try again or use a different word? If I am not watching we could go far too long with everything off by just one letter, for example. I see it all as an essential part of the support I am providing.

    • Canuck’s mom – I’m grateful that Char gave her thoughts on this as she has been facilitating for a great many years and has helped an enormous number of users.
      I will just add from my extremely limited experience and have only tried to support one person, my daughter, but in her specific case, there is an issue of impulsivity. If I do not provide resistance she may hit any random key or a favorite letter that will begin a favorite script. She may also begin to answer the question, but then become derailed by a letter that starts a favored word or script. And as Char says in her thoughtful answer, I also will stop her if she types letters like pk and will ask did you mean to type the “p”? Often she did but was trying to hit the “l” next and typed the letter next to the l.
      Hope this helps. PS Key guards can be helpful with hitting nearby, but unintended letters.

  5. Here is some video that shows her impulse issue with typical iPad apps. I guess you could say that the clear acrylic I used to slow her down is like the resistance you wrote about above. What is your take on it? Thanks. http://fumblingthruautism.wordpress.com/2012/12/20/preschool-with-the-ipad-listen-think-poke/

    • Yes! Exactly what you are seeing with your daughter is what I am referring to, the impulsivity. I would also suggest you not repeat the instructions as it seemed that 90% of the time, she was able to point to the correct answer. I (could be totally wrong here) suggest you try some more age appropriate apps for her. I think these are probably fun, but awfully easy for her. Interestingly the one she didn’t get, (I think it was which one’s biggest) was off to the left. I’ve seen this with my daughter too. When a letter, usually far to the left on the keyboard, is off to one side, she won’t reach for it, and instead will hit something closer to center. Do be sure the iPad is centered to her pointing hand. Grasshopper has some good ones, Math Magic and Spelling Zap are good. I may try to write a post on a number of the apps we now are using that Rosie (Rosemary Crossley) recommended later this week or maybe next, if I think of it.
      I’d love to get more seasoned facilitators to weigh in here though. Perhaps Char, if she has time will comment! 😉

      • This was an old post and we have come a long way. She is doing more K type apps and she is 5 If she is having trouble with any app, I just show her a few times and some time later I she usually gets it. If a week goes by where she doesn’t and she is still trying, I show her and she gets it then. I focused on apps that move her all over the screen and drag in different directions and it seems to have helped. She still likes to stim with some apps, but I can show her others or other parts of the app and she always moves on. There is just a delay. Proloquo on the other hand…she LOVES to stim with it and I never tried the acrylic block with that. That is why I was wondering about your resistance, because it would be more practical. I totally get what you are saying now though. Thanks for writing such a great post!

        • Oh you guys are doing great! I hope it was okay to make a suggestion. I am certainly not an expert on any of this, so take anything I say with a grain of salt, as they say, and do look at videos many have made as well as the ICI website that I added a link to in another comment on this thread.
          So the resistance I give, is really the same idea as what you (rather ingeniously, I might add) are doing with your plastic shield, in that it doesn’t allow her to just randomly hit stuff. Rosie (Crossley) introduced us to using a pole (like a dowel) but plastic that the user holds with their pointing hand and the facilitator holds with (usually) their right hand. The movement we are going for is rhythmic and the facilitator pulls back after each stroke (this part is tricky in that there’s a balance of not pulling back and waiting too long, but just enough to ensure the user will have time to consider the next letter. The other way this is done is by having a hand on the users forearm near her wrist or elbow. All of these ways are meant to be faded over time. Someone like Tracy no longer needs more than a hand on his shoulder or upper arm.

          • Oh please don’t feel bad at all about the comment…I was giving further info on where we are at now, just as an FYI for those who wanted to comment.

            Thanks for the detailed explanation. And I TOTALLY understand now. I just had to connect it to my experiences and this piece you wrote helped me do that. I need to consider what to do with Proloquo next and this is very helpful.

            • Marilyn Dixon

              Proloquo, though an excellent app, is very busy. My daughter has trouble typing on the keyboard because it gives too many word predictions choices at the top. The icons are good but again there are a lot to choose from. Resistance helps. Holding her arm back til she has time to process which choice she wants. I hope you also will try the screen with Proloquo and gives us feed back as to how that works. My daughter started typing words at age 6 using facilitated communication. She typed some amazingly big words for that age so I imagine your 5 year old knows more than you even thought–perhaps can even spell. have you tried it with her yet?

            • Nope, haven’t tried the spelling yet. She can spell some short word in various ways, but I think she is on the cusp of that. I will give Proloquo another go with some sort of way to have her pause and look. I did, with the help of a very good consultant, completely customize the screens, and tried bigger icons, various layouts…spent many, many hours experimenting. It is so much harder than I ever thought it would be! The thing I did notice was that what my daughter had to say with Proloquo when she did manage to look first before poking was similar to what she was saying (or not saying) verbally. But maybe she still had an impulse issue that wasn’t clear to me, so I need to provide the resistance to do a true test. I will try with song titles and places we go, which are very difficult for her to verbalize. I worked a very long time getting the appropriate icons (took pictures, expanded them, picked icons for songs that were representative of the songs, etc) so I think I have done all I can with clarity and simplification (but not over simplification).

          • Ariane, I like your description of the correct resistance. Kim won’t hold a dowel and type (perhaps feels too big in her hand), but she will use a pencil. She holds one end and I the other. I, as you said, pull back after each letter. We use that method sometimes. Also, Kim types now with her elbow resting on my hand (when she is in the right frame of mind). And yesterday she rested her elbow on a book and independently typed a word without me touching her. I was so proud. Need to practice that skill more. The ipad is still hard for her to access independently though. so easy to accidentally type the letter next to the one she wants. I need to get her the keyguard mentioned at conference and give it a try.

    • Thank you for sharing the video of your daughter. this was a great example of impassivity that can often be a problem with people with autism. Your daughter obviously knew the correct answer just needed time to process the instructions. Your plastic screen idea is awesome. Loved watching your daughter think through her choices and then being able to choose independently with success. Thanks for sharin.

  6. Thank you ever so much for making this not about Emma proving herself to others. My skills plummet under a watchful eye. I there’s always a false choice Pass or Prove, and I can’t do either. You are gifting her with the knowledge that she has nothing to prove. She can just be. You are buffering Emma from the doubters, and that is hard. I know it hurts like all get out. But giving her that safe space to grow is beautiful.

    • Oh Bridget, I am exactly the same and just wrote this in my reply to Brenda. I say things like, “Give me a second, I’m drawing a blank,” but I’ve also, during an interview that was being recorded just said the first thing that came to me (and it was completely wrong!)

  7. Thank you, Ariane, for this wonderful post. You know why I love it so. We have experienced much the same throughout the years, but are so thankful to be surrounded with many friends/family who believe in Kim’s competence. However, by the words some still say in front of her, I don’t think they really understand how competent Kimberly is. The real biggy for Kim is that people often ask questions or direct statements to me rather than talk to Kim herself. Like “tell Kim that I like her poetry”. or What is her favorite thing to do?” Kim is right there in front of you, tell her/ask her yourself. Duh! Kimberly and I were so thrilled with the opportunity to meet you and Emma. Wish there had been more time to talk. I would have loved for Kim and Emma to chat together. Perhaps when you come to Austin in September? We must get together then. As I mentioned before, you two are welcome to stay in our home.

    • Thank you so much Marilyn. Yes, let’s absolutely try to get together. I haven’t made our flight plans or hotel plans yet, but will be in the next two days. When I have everything done, I’ll let you know.
      Great seeing you both. It was very busy and I must admit I was overwhelmed after that first day!

  8. Can you help me understand why a touch or prompt helps Emma and others to write, while without it they can not and only revert to writing scripts. I’m a little confused? Any articles, books, and/or references on this topic you can suggest?

  9. Let me ask around and see if I can find any articles and get back to you.
    I can tell you that from speaking with Tracy Thresher about impulsivity (he talks about it in the interview I posted the other day) and seeing my daughter it is easy to go to scripts and sometimes the scripts are even relevant to the topic, so that is doubly EEEEE! But I would say I provide more resistance than prompts, though maybe that’s what you mean when you say “prompt”? So like Grahamta, in the video link she provided of her with her daughter, the impulse to hit randomly, especially if there’s the added “YAY!” of fun sounds, is nearly irresistible.
    Providing resistance or as Grahamta does with a plastic shield, she is given the space she needs to respond as opposed to react. Come to think of it, I need that sometimes too!

    • Thanks for responding. I read through more of your posts on FC. Now I have a new question. And please excuse my incompetence on this subject. I’m just trying to understand. Does the facilitation have to be provided by another person? Couldn’t a weighted blanket or something else substitute the “touch” given by a human facilitator to help regulate and calm the impulsivity to type default scripts? Why does it have to be another body in close proximity to the one typing?

  10. I am weeping. Emma verbally just said “you’re crying.” A gift is what your post today. As I wrote to privately, we had the meeting. I have never been more proud of Emma as she was told the rules…….
    She is determined to complete her application process. Possible reading on expressive dysgraphia helps explain some…..believe me, I too am doing research.

  11. InInstead of asking “how is this possible?” perhaps the better question is “how is this NOT possible?” It’s incredible to me the things that people (often including myself) take for granted as being perfectly plausible and yet so many other things are immediately dismissed as “impossible” simply because it’s outside our conditioned frame of reference.

    Case in point: Seeing. If you’re not blind you’re “seeing” all the time, but how does it work? Check out this lecture that Ariane shared with me and you’ll “see” how the simplest things we take so much for granted and NEVER question are incredibly mind-blowing.

    Even if you only watch the first few minutes, it will completely alter your ingrained perceptions. Then come back and think about Facilitated Communication. Not such a stretch anymore, eh?

    Even so, and even though I’m a crackpot fringe science disciple, I STILL have doubts about Emma’s typing from time to time. However, I do recognize that my doubts are 90% conditioning.

    • Where’s the link to the video? Tell me which one and I’ll add it for you. 🙂

    • Loved your post, Richard. Wish we could have met you at the Syracuse conference, too. Will you be coming to Austin with Ariane and Emma? If so, we can meet then. My daughter, Kimberly, has been typing using facilitated communication for over 20 years now. (Learned to communicate at age 6; is 28 now.) There are still times when Kim says things so profound that I think to myself, how can she know this==especially when she was Emma’s age. Case in point. Go to http://www.freepoet85.weebly.com and check out some of Kim’s poetry. Note, the ones on friends she wrote when she was 10 years old. I had no idea that friends meant that much to her as she was nonverbal and couldn’t express it with her body actions very well. Even though she could type then, she never mentioned friends that much However, the importance of friends came out in her poetry. And then look at the one called Roping the Moon which she wrote when she was 13. I was her facilitator for that one, but I don’t think that way myself. Those were her thoughts about the moon and life. I couldn’t have sat down and written that poem if I wanted to. By the way, where is the link to the lecture you were talking about? I’d like to see it.

  12. I know it wasn’t the point of your post, but the first few paragraphs where you talk about people saying that they wouldn’t have know that Emma is autistic unless you told him is very familiar. I have a lot of people that don’t know my son tell me the same thing. The last one was a new person who cut his hair. He usually goes to one person, but this time she was sick so we saw someone new. I explained his needs and the routine and then somewhere along the course of the haircut she said something to me (can’t remember what) that made me reply that he is autistic. I got the “Oh, you would never know” response. I’m never quite sure how to respond. I usually say something about it being a spectrum and how all autistics act differently. I dunno….is there a better answer?

    • Beth, if there is I don’t know what it is. I’m always searching for the right response!

    • It’s so…”funny” isn’t the right word, but…so she obviously *did* notice something different about him, to the extent that you felt you needed to tell her he was autistic. She only would never have known because he didn’t fit the oversimplistic preconception in her head of what autistic people are like. I actually run into this a LOT. What most people actually still think autism is, isn’t what it is at all, and so even when they blatantly notice rather overt signals of autism, they don’t see it. They probably WOULD have guessed if they knew anything actually true about what autism is….

      Like, non-autistic people almost never realize that I’m autistic, and say things like “I never would have known,” when for some reason it becomes necessary to tell them.

      Other autistic people practically always know, and do so within a few minutes. It’s something that I actually realized had been happening my whole life, even when no one else, including me, even remotely thought that I was–other autistic kids always knew.

  13. I was just curious if there was a good answer out there in the autism world that I didn’t know about.

    • I usually say that with autism, movement and vocalizations that would make autism obvious to someone like her go up and down in their expression and that they depend on internal state and external environment factors. That should shut her up, and it is 100% true! You may have to practice it a few times so it rolls off your tongue nicely 😉

  14. Not that I’ve heard of! Well, that’s not true, but they usually have a great many swear words in them, so….

  15. I had the opposite issue, growing up: People saw how I could talk at length about the anatomy of a severe thunderstorm and heard about how I taught myself how to read and do arithmetic at 2 and couldn’t believe I had problems with stuff. I couldn’t be clumsy. I had to be purposefully dropping stuff. I couldn’t legitimately have trouble with writing, I had to be lazy. I couldn’t have trouble staying organized, I had to be apathetic. I couldn’t have trouble pronouncing words clearly and saying sentences fluidly, I was just seeking attention. After all, it wasn’t that hard, and my protestations to the contrary were just me being difficult.

    If people would set aside their preconceptions (that smart and learning disabled are mutually exclusive, that fit and chronically ill are mutually exclusive, etc) and meet others where they are instead of meeting them where it’s assumed they should be, the world would be a much easier place to live in.

    • Very good thoughts. Thanks for sharing.

    • Chou Chou Scantlin

      Love this! 💕

    • Agreed, I am so sorry this was your experience growing up. 😦

      • While I do appreciate the sympathy, I have to observe that Emma and people like her probably have it worse. I grew up to feel inadequate because of repeated failures in my ability to live up to where others assumed I should be. Emma’s growing up situation is one where most people in the world assume she is so incompetent that anything she can do for herself is suspect and either it must really be you doing it, or it’s a savant skill and as far as they’re concerned, it should be destroyed to make her more normal with no concern for what makes her happy.

        I can’t even imagine how that must feel. I don’t even have words that can adequately describe it. The closest I can come to articulating it is saying that at least with me, they were assuming me competent. 😦

        • All of it makes me angry and sad. The way you’ve been treated, the way my daughter is treated, the presumptions people make… all of it. I told a friend of mine the other day, more and more I fantasize about finding a deserted island where I can go with my family and like minded souls.

  16. I really love this post Ariane. I have heard various individuals share those words many times… “well he/she doesn’t look it!” What does that even mean? Because someone has Autism means they must be whatever stereotype society has created? And to not be part of that stereotype must mean that someone is lying, or not “realizing” the truth? How terribly unfair.

    For you to presume competence, to KNOW your daughter and what she can do and what she is capable of, in the face of all those who tell you she can’t, or it mustn’t be true, or you’re not being something or other…that is a phenomenal thing. Bravo.

  17. Chou Chou Scantlin

    I usually smile and say, “Oh, really? Then I am glad I am getting the oppurtunity to meet an autistic person like me:) You probalbly have encountered many, and just didn’t know it, but, I hope you are at least, enjoying your encounter with THIS autistic person”. I then continue the conversation in a relaxed, happy way, as if nothing had happened. The nice part is that, by speaking up, if I encounter something challenging, like background noise, I can ask them to repeat it, and I am treated with understanding and respect:) My secret weapon is learning that, if you treat people as if they are charming, they will do their best to prove they are!
    Sorry I have nothing to add about FC, for I know little of such things. I can understand resistance, for, if I am walking in a confusing environment, I can hold Doc’s arm and find my way, and even lead the way. He doesn’t guide. He anchors. Otherwise, my next best choice is the wall, which can look rather strange in public. Hope I’m not too off topic!
    Another nice post, darling! XO!

  18. Chou Chou Scantlin

    Sigh. Again. I meant I am glad YOU are getting the opportunity. (ack!)
    Perhaps I am the one that needs help typing 😜

  19. Ariane and to dear Chou Chou…what you referred to about walking with support…THAT is exactly what Emma uses as an analogy. She says if she needed assistance walking, would anyone ask whose feet were moving.
    Brava Chou Chou!!!!!!

  20. This resonates on so many levels… ❤ ((Ariane)) you are appreciated!

  21. Emma, what a great analogy. Can I share it?

  22. Chou Chou Scantlin

    Thank you, Paige! Thank you Marilyn! Thank you, Emma, for validating my point:) 🎈🎈🎈🎈🎈

    • It really is such a great analogy, Chou Chou and one I hadn’t thought of. Anchoring. I think this is exactly the word that sums up so much of the support that is needed and it also is the word that describes my goal as a parent. To be an anchor for both my children. Love the image of that too!

  23. I can relate to what you’re saying I tell people about all the stuff I’m doing and they turn to the people I’m with and ask “can she?” as if they don’t believe me it’s insulting.

    • Nisha, I am sorry that has happened to you. I imagine that is both frustrating and insulting. Thank you for sharing as it will make me more aware of the words I say. It has happened to my daughter as well. One of the most hurtful things is that she now is publishing a book of her poetry and art, and her own aunt said something to Kim’s brother about having a hard time believing Kim really communicates like this. Her brother said to the aunt something to the affect that “if you took some time to talk to Kim and get to know her then maybe she would communicate with you.” I was so proud of my son when I heard that.

  24. Reminds me a bit of Joanna Russ’s book HOW TO SUPPRESS WOMEN’S WRITING, where she lists all the ways that women’s writing can be said not to be theirs; similarly, despite the great things your daughter can do, they can’t admit that it’s true. Maybe we need a HOW TO SUPPRESS AUTISTICS’ VOICES book along the same lines, demonstrating all the ways that their voices get written out. Of course, it’s for an autistic person to write…and I bet she would do a great job, too!

  25. Pingback: In the News – August 2013 | The PsychoJenic Archives

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