“People Do Not Believe Me”

“People do not believe me” was what Emma wrote on our last day in Texas last week.  Prior to that sentence she wrote a message to Richard and me that left me in tears because it expressed her gratitude for believing in her and for fighting for her right to be thought competent and intelligent.

One day my daughter will be able to write what she feels and believes independently, of this I have absolutely no doubt.  When that day occurs, she can choose what and when she wants to write such things, but for now, I will keep this post to my own views and opinions.

As many of you know, it was not so very long ago that I was one of those people Emma was referring to.  I have a great many feelings as I write that sentence, but as I trace back what was going on and why I didn’t or couldn’t or wouldn’t believe in all, that it turns out, she is capable of, it wasn’t that I didn’t want to, it wasn’t that I didn’t hope, it was that everything I saw, heard and thought was muddied by what I read and was told and was confirmed by what I thought I was seeing.

When I met people face to face (as opposed to reading their words or hearing of them) like Barb Rentenbach, Tracy Thresher, Larry Bissonnette, Amy Sequenzia, young Nick, Joey, Jamie, Jenn, Mark, Tito, Sarah and countless others who do not speak, or whose spoken utterances are not in keeping with what they write, I began to question what I once believed.  It was during a presentation Barb Rentenbach and Lois Prislovsky gave at the Autcom Conference in the fall of 2012 that I thought, okay, maybe, just maybe, my daughter is not saying what she intends to say.   At that same conference I went to another presentation with Larry Bissonnette, Tracy Thresher, Pascal Cheng, Harvey Lavoy where a young boy, younger than Emma, typed on his iPad extremely insightful comments pertaining to the topic and again I thought, maybe, just maybe my daughter is like that boy and I just have to find a way to help her communicate.

It was the first time I’d really considered the disconnect between speech and intent.  It was the first time I began to wonder whether all this energy being placed on output of spoken language was the best way to help her communicate.  You see, up until then I bought into the idea that if we could just get her to talk, we would be giving her the tools she needed to say what she thought, that the words that came out of her mouth were indicative of what was going on in her mind.  We even would give her spoken prompts, say a sentence and have her repeat it, as though if she could just repeat the words, even though they were dictated and not her words, they would make sense and the connections would be made.  And when they didn’t seem to build to a critical mass, instead of questioning the push for spoken output, I questioned what was going on in her brain.

This was a huge mistake, it turns out.  Huge.  But I didn’t understand.  I didn’t see the error in this thinking.  I could not believe.  Not yet.

And then I met these wonderfully resilient, creative, intelligent people who did not communicate through spoken words, but instead wrote beautifully, poetic words that put together made equally gorgeous sentences that spoke of insights and wisdom and hope and strength and courage and compassion and I was blown away.  At first I thought each person was an anomaly.  I told myself they couldn’t possibly be representative of many, they had to be one in a million… and then I met more and more and eventually, even I could no longer doubt what I was seeing and witnessing, this critical mass… this unleashing of hundreds of voices, each unique and yet all…. all were communicating what was in their minds and many spoke of that disconnect that occurred between a thought and what then came out of their mouths.

“my mouth constantly talks different from what I think…” Emma wrote.

“People do not believe me.”

“Yes,” I told her, “but that is changing…  that will change.”

It is my promise to my daughter.  I will not stop writing until it is no longer necessary to say these things.

Lois Prislovsky, Barb Rentenbach and Emma

L,B&E copy

57 responses to ““People Do Not Believe Me”

  1. Go Emma! The world is a better place with you in it. Cheers to you and your family. Happy Thanksgiving!

  2. Wonderful! When people speak or write about “non-verbal” individuals, I usually try to point out that “non-speaking” is probably a better term, because many of these people understand and use verbal language in other ways, such as by typing. I think part of the confusion comes from the idiomatic use of “verbal” to mean “oral” — but strictly speaking (if I can use that word here) “verbal” means having to do with words.

    A Google search for “verbal” returns this result:

    ver·bal
    ˈvərbəl
    adjective
    1.
    relating to or in the form of words.
    “the root of the problem is visual rather than verbal”
    tending to talk a lot.
    “he’s very verbal”
    2.
    of, relating to, or derived from a verb.
    “a verbal adjective”

    noun: verbal; plural noun: verbals
    1.
    a word or words functioning as a verb.

    • That is a very good point! I have been describing my son as “non- verbal” even though he writes beautifully. I will start using the term “non- speaking.” It is true that semantics can make a difference. An example was the use of the word “dumb” to describe a non- speaker. It would lead people to think that the non- speaking person had no intelligence. The term “non- verbal” connotes a person has nothing to say when in fact he or she has plenty to say, but just cannot speak it using their voice. From now on I will use the term ” non- speaking.” Thanks for pointing this out!

    • hi Michael, yes, non-speaking is the term I use, but I see that in this post I refer to “verbal output” and have now edited with “spoken”. I hope the edits are okay. Thanks so much for pointing this out as I thought I HAD written this clearly, but I see now that it needed to be amended. Thanks again and Happy Thanksgiving!

      • Ariane, Happy Thanksgiving to you and yours. I did not mean my comment as a criticism of what you wrote. You are wonderfully thoughtful and sensitive always. I was commenting on my own campaign to get others to think the way you do.

        As I think you know, I am active as an advocate. I am on the Autism Commission in Massachusetts and serve on Boards and Advisory Committees. Sometimes I get discouraged because, despite the efforts of so many good people, our message is not getting across and we are not getting the help and support we need.

        You are one of the people who give me strength to carry on. Your honest accounts of your struggles, doubts, and (yes) even mistakes are so very heart-warming. Emma knows that she is lucky that you have tried so hard to understand her. I know you have a wide following, and that also gives me heart. Don’t let up for a minute. What you are doing makes a huge difference.

        • Oh thank you so much, Michael. This is really so kind of you to say. When I read your comment, I realized I should amend because as you rightly point out verbal is not the same as spoken. In addition, someone else had gently and nicely made a similar comment to me privately. I so appreciate you and others taking the time to comment, especially when you could just read and move on. I do want to get it right and try hard to, but also know this is learning process and I have a great deal to learn.

          I too feel discouraged at times, but then someone will write me that they understand, or something shifted for them or they heard someone like Ido Kedar speak and they finally understood and I’m filled with hope! Just tremendous hope. And as a close friend of mine, who was and is very active in the civil rights movement said to me the other night, the most important things we have are not the things we can see… The most important things are hope and love…

  3. My daughter is 9, and while she is verbal, she sometimes has great problems expressing herself, especially when she gets emotional. You can see it in her eyes, it’s like all the thoughts hit a brick wall, get jumbled up, and she just can’t get them OUT. There in there… she’ll tell me, “Mom, I just can’t word through this.” She’s always got the option to write us letters to explain what she’s thinking and feeling, and for her, this is FAR easier than trying to “word it out”. 🙂 I’m glad Emma has you championing for her, and you guys have got this figured out for her.

  4. Sending love….go Emma and Mom! Have a great Thanksgiving, too!

  5. There is so much to be thankful for tomorrow, and you, Emma, are one of them!
    Lots of love from Granma

  6. Gosh. Just a bit longer, and I can catch up with all the worderful things happening here. Big hugs and much squirmings of happiness at the wonderful things I am able to catch, while I fly through the big load of shows this season.
    Of all the skills to focus on, to consider a priority, the ability to communicate is the one. Finding a way, any way, when it is not something that comes easily, is the most thrilling, self satisfying, empowering, thing of all. Find your words, Emma. We know you have good thoughts. Give us good words, and we will give you good ones back. We will be happy, all of us, together:)
    I am long past the struggles I used to have to speak…Well, except for never having the time, or resting my singing voice. I do have a voice that still turns VERY baby sounding when I am excited. I have learned to turn it into an advantage, and my Betty Boop-ishness is usually well enough received. However, at the last show, I came onstage to introduce myself, and a tipsy young woman down front started mocking my voice, laughing, and getting her friend to do the same. I froze. She did not know how hard I’ve worked for those words. She could not see an intelligent woman in command of her craft. I wanted to explain, so she never did it again to someone else, but I moved on, and won the night, as my professional life demands I do.
    This is so trite, so small, compared with those who communitate in far different ways, and I am cheering Emma, Barb, and all the rest on, and thrill at the advantage of tremendous thoughts, which they all surly have, and the ability to find a way to share them with others. Sending huge amounts of love 💞

    • Aw… Chou Chou I really hate that someone would mock you for your voice, it is yet another example of how people do not think at all about the impact their insensitivity has on others who are working so hard to do, what they take completely for granted.
      Sending you love and cheering you on during this busy season!

  7. I wrote this to share with people in my social networks and link them to this post. I hope it makes them ask the questions that lead to assuming competence:

    When a person cannot speak, or speaks with difficulty, sometimes echoing what others have said, repeating the same words or phrases over and over, reciting something someone said long ago–what do you assume about them?

    If someone looks or acts “differently”: spinning, flapping, rocking, hopping–what does that “say” to you about that person?

    If a little boy or girl doesn’t make eye contact with you when you speak to them, or doesn’t have any perceivable reaction to you at all, does that mean that he or she isn’t listening? Does it mean this child couldn’t possibly understand what you are saying?

    If an 11 year old little girl speaks like someone much, much younger would talk, does that mean her intellectual abilities are equivalent to the manner of her speech? Is it possible that someone who speaks like this can write wonderful stories, share remarkable insights, express emotional tenderness of heartbreaking poignancy?

    There are those who doubt, even in the face of written evidence that non-verbal people, or those who speak with difficulty are actually writing the amazing things they do, if those writings are in any way assisted by another person. There are those who doubt, even when a person is typing independently right in front of their faces!

    Why? How? Perhaps because our human identity is so closely identified with our capacity for language. No other animal talks right? And so people without speech or those that have limited speech are treated as “less than”. They are doubted. They are not believed. There must be a puppet master pulling their strings– accurately placing their fingers one letter at time so they can spell out their own thoughts and try to pass them off as those of the person who is writing.

    “People do not believe me.” That I am so smart, so capable, so kind, compassionate, witty, charming, wise, and bursting with things to say.

    “My mouth constantly talks different from what I think…” And people listen to what my mouth says and think this is all I have to say. People believe my mouth more than the words I write.

    it’s sad, but it is changing. One day at a time. One person at a time. People like Emma and Ariane and so many others are beginning to be heard. And believed. And respected.

    I know. Because I’m one of those people who didn’t have a clue that my own daughter had so much more to say than her words were capable of expressing. But now I know. Now I believe.

    • And how many times have I asked you, “how long before I stop being surprised?” AND that’s WITH believing… though I do love being constantly surprised as it fills me with such joy. So glad we are in a place now that we can be surprised rather than seeing things and dismissing them as coincidence or a one time thing, convincing ourselves that it was a fluke and will never be repeated.

    • Beautiful, Richard.

      I feel sorry for those who do not see the complexity of the universe. So much joy, so much wonder, must be lost to them.

      When you say “No other animal talks right?” i know you are using a mocking tone. I, for one, talk to and listen to other animals. When I read the book “The Horse Whisperer” I thought, oh, of course, that’s obvious! That was years ago, before I understood that I am autistic. Now, I think he probably was, too.

      I have cats and horses that I have regular conversations with. We may not discuss politics, but we talk about things that are mutually important to us. When I ride my horse, I have a nonstop conversation with him. I speak out loud, and he speaks to me through his body and his actions. I also speak to him with my legs as I guide him and through my hands as I caress him. I feel closer to him than I do to many of my human friends.

      Once, many years ago (again, before autism awareness entered my life), a friend of mine observed me speaking to a dog. He said, “You’re the only person I know who asks a dog a question and then waits for the answer!” I told this story to another friend, and she smiled, “Yes, and you’re the only person I know who would understand the answer!”

      I have been a vegetarian for over 50 years because I cannot imagine eating my own kind.

      So, yes, intelligence comes in many forms, and spoken words are not the be-all and end-all of that.

  8. What a Happy Thanksgiving to be had; thank you Emma for not giving up on the rest of the world and to be willing to communicate still, so wonderful to receive your words. Ariane, thank you for fighting this good fight and giving the opportunity to the rest of the world to see what is really possible. I hope all of our children and the adults are able to express themselves and be heard and get the respect they all so deserve. Em you rock.

  9. Thanks you for your blogs, We have had the pleasure of meeting a few of the people yoiu mention.and it is really very cinvincing to see them write and express themselves. There are so many like Emma and almost all struggle to be believed.
    I think it would help if more people saw with their own eyes how Emma writes, How she does it, how her body works. Like we saw in DVD’s of Jamie, larry, Sue and others.
    Would that be possible?

    • Even if Emma agreed, until she is a bit older, I would be extremely reluctant to post a video of her writing as I have seen people ridicule and disbelieve others who have done this, even though the video clearly shows them typing or pointing to letters on their own, there are those who will say incredibly cruel and mean things because it threatens what they believe to be true. I would hate for my daughter to feel the sting of people’s insensitivity as they pick apart what they see her doing. One of the most common search terms that I get almost daily, leading people to my blog is “Carly Fleischmann fake”. It amazes me that people can plainly see Carly typing, no one touches her and yet people persist in believing that she must be a “fake”. I cannot imagine how much that must hurt. So many are working so hard to communicate and then to do so after all that hard work and STILL be doubted… Honestly, I cannot imagine how upsetting that would be.

  10. Yes, indeed. They are not each one an anomaly. They may be unique, but there are so many voices out there waiting to be heard – and believed. I am eternally grateful to the three of you – Ariane, Richard, and especially Emma – for sharing your story. Happy Thanksgiving!

  11. emma, i am saving this photo and will include it in my next book scheduled to come out this spring because you see it makes me look smart to be in your company. here is what i know: people will know and respect you soon enough. take your time wise one. your slow roasted words are the nutrients for all our future. we will see each other again this spring when i am in nyc doing the next audio book. i want you to join me in the studio as i plan to show you some things you will need for your journey. i love knowing you and believe in you fully. with you always b

  12. In regards to

    “It is my promise to my daughter. I will not stop writing until it is no longer necessary to say these things.”

    please know that you have a lifetime job and I am ever so glad to know you have signed on. ❤

  13. I believe you Emma! Thank you, thank you, thank you. I could say it a million times. Thank you for helping me to believe. Thank you for helping me understand. Thank you for so much more. Thank you!

  14. I have been following your journey with Emma for a while now. I believe that what Emma expresses in her new ability to use writing to communicate.As parents we work very hard to find the best route to take in helping our children grow and discover themselves. We make mistakes. I know my wife and I made wrong decisions before we found what was best for our son. I applaud you on the hard work that you and Richard have done on behalf of Emma. I applaud Emma for her hard work and her successes.

  15. Ariane this is Emma. Do not assume that perhaps everyone thinks. I am learninfpg this. I am perhaps very lucky now to perhaps decide not to force myself in a place have bad feelings.i decide to give people chance. I ask my teacher in economics you question I teach you write with me. Overwhelm. He is learning from me and dad now. I wish Emma little is most comfortable with what she is being.

  16. beautiful, and inspirational.
    Thank you x

  17. Just absolutely amazing. Kudos to Emma (and you too Ariane) and happiest of holiday!

  18. Yes. Even though I was speaking early, words still sometimes refuse to come out of my mouth. There is a far stronger link between my mind and my hands, and ASL was actually my first language, thanks to my mom.

    Another problem I have is that the muscles in my jaw are really weak. I have to eat with my mouth open, and my speech will sometimes slur from it. Therefore, I have a habit of oversimplifying my speech so I can save my energy. If you asked me to sum up my comment out loud, it would probably go like this:

    “My jaw’s weak. Easier to use my hands.”

    Note the discrepancy and the grammatical mistake. That’s from a fully speaking teenager. Consider that.

  19. As Qui-Gon Jinn says to Jar Jar Binks in Phantom Menace, “The ability to speak does not make you intelligent.” And the opposite is also true! Thank you Emma and happy Thanksgiving!

  20. Hi Ariane! I have learned to say “non-speakng” and certainly it is more accurate than “non-verbal.” I’m hoping/assuming you have covered what I’m about to say, which is that I don’t like either phrase as they only describe what the person cannot do. Is there a term that describes what Emma, Amy, Henry and so many other can do, and do so well?

    • My first thought was – “communicators”, certainly some people type and all are writers. I asked Emma what she thought about my describing her as an unreliable speaker (which I don’t love either and again implies a negative) and she said, “Yes, unreliable. Mostly talking other words even though not what I think.” It’s difficult to discuss what occurs without it sounding like a criticism or as though it’s a deficit, even when one does not see it as such. One day when we are so advanced we can read each other’s minds, talking will be considered barbaric and incredibly time consuming…

  21. I so look forward to your posts, and that of Emma and Richard, thank you to you all for this, for showing the world change is here. Emma dear, don’t give up, it is always hard being the frontrunner of the movement of awakening, you are making things better for other beautiful, intelligent individuals just like yourself. Have a Happy Thanksgiving!!

    • Thank you so much! This is what Emma just wrote and gave me permission to post on Facebook –

      “Decade of ignorance dead. Deny ideas of intelligence can directly minimize the amount of self worth one feels. I am grateful many are believing in me.”

      Happy Thanksgiving!

  22. I think I may be one of those moms who at this point is saying ” okay, maybe, just maybe.” I am wondering what the tell-tale signs may be. Are there any dominant characteristics you can point to that indicate that a person may communicate better by typing than by speech? I’ve been reading your blog with admiration and skepticism. I’ve looked into RPM and as far as I can figure, there isn’t a local resource for it near us. – The DVD – home program scares me – I have failed miserably at too many ‘home programs’. I would be willing to travel but before I commit that kind of time, money and energy I need to have some reason to believe this would really make a positive difference for my daughter. Any pointers?

    • Oh Nancy I hear you about reading this with skepticism… I smiled when I read this comment from you because I so understand as I felt exactly the same way.

      I don’t know that there are any tell-tale signs, which is part of why it’s hard to believe. I have watched Soma work with half a dozen different people and all were completely different from one another, yet all showed they were capable of making choices and were certainly showing themselves to be capable of far more than I, anyway, had initially assumed.

      Soma’s newest book (the green cover) is terrific in that she gives sample lessons that are particularly helpful. If you are on Facebook there is a group devoted to RPM where people have posted youtube videos of them working with their kids and a wealth of other materials, lesson plans and tips that I have found invaluable. Send me a friend request and I will invite you into the group, if you like.

    • Nancy, your question makes me think, and leaves me struggling to express an answer.
      Your question is intelligently yet atomistically (focusing on technical detail) phrased, when any answer tends to be woven out of holistic grasp of matters.
      How do those of us who are significantly autistic experience things? I can be a powerful verbal-social speaker, on occasion: but I invariably then trigger such a firestorm of reaction and response; that without the resource of a keyboard to subsequently defend what I have said, I would end marginalised, misrepresented, without a job. Without a keyboard I would not get to express my sensing and thinking, even privately to myself; so much would remain inchoate, locked in autistic silence.
      It then seems to me that autistically characterised children I educationally support, are circumstanced as am I. The social-verbal world is not configured to allow them to richly and fulsomely express, their autistic sense of things, their autistic thinking. I then see these children (as Richard speaks to above) as expressing their autistic experiencing in mediums often then viewed by others in terms of behaviour; where that viewing by others then sees things playing out in ways I think not in the best interests of these autistically situated children.
      I would want these children to be representing and expressing and realising themselves realtime and in social-verbal ways, because that is such a powerful and flexible modality. Right now things don’t play out to well for an autistic constituency around that possibility. This constituency then need additional or further resource. Additional communication resource fits that bill, and for a multitude of reasons.
      There is then something of a hidden-emporium of additional communication resources. Hidden because for a social-societal mainstream, recognising and developing and implementing these resources is not a priority; because that mainstream has convinced itself that the autistic (seen as Autism) is a neurological disability manifesting in deficits and impairments which reduce a person’s capacity to be a mainstream player.

      Emma’s situation, it then seems to me, has arisen out of how those now supporting her, have experienced her holistically, and have experienced the mainstream circumstance that would have received and responded to her in a particular way.
      What is then emerging as a developing Emma, is organically and complexly and richly grounded in a community which, across its best efforts, strives to optimise its perception and understanding and expectation for Emma. This an effort defying the perceptual/intervention gravity field of a mainstream.
      Resources such as RPM then reflect and are embedded in this undergirding circumstance. What Arianne then reports are Emma’s experience of and response to that circumstantial support.

      I hope I haven’t dropped off your radar Nancy. I so wanted to give you an answer. That answer having it that something akin to faith, to autistically attuned holistic apperception and believing is involved going forward.

  23. Pingback: Celebrating Gratitude | Emma's Hope Book

  24. My daughter is turning 13 in December and we are just now discovering the disconnect between her spoken words and what she really wants to say. She has always been considered “verbal”, and even though she was assessed for Autism twice (once as a toddler and once as a preschooler), it wasn’t until she was 10 years old that an official PDD-NOS diagnosis was given along with dysgraphia. She was diagnosed with Bipolar at aged 8, but her doctors remained on the fence about this diagnosis until this year.

    We had her re-evaluated in October under the new DSM-V criteria and she is now diagnosed with ASD, level 2 with an expressive language disability, along with Bipolar II with an overlap of ODD, dysgraphia, and dyslexia. Before we could not figure out the reason for her choosing to be aggressive over expressing herself verbally. Was is because she didn’t want to do to the ODD or was she just not able to? My daughter is highly intelligent, and we have known this since she was little, but the Bipolar and the Autism seem to fight against each other and it is difficult to figure out what exactly has been going on. This made it difficult to figure out how to help her. We have tried to teach her different ways of communicating. I taught her sign language when she was a baby and she still uses this skill today (her own signs, though). She tries to use her signs with other people, and they don’t understand her, which makes her very frustrated. I understand her signs for the most part, but most people do not. She has also used numbers on a “Worry Chart” and an “Angry Chart” and used face pictures showing emotions. She just didn’t seem to be able to use words to express herself and the skills we tried to teach her just didn’t seem to be something she was willing to use on a regular basis.

    We are finding out now that even though she seems to be able to speak, many words are hard for her to use. It is not just the long words she has trouble with, instead, a lot of the time it is the little words. Being a science teacher, my kids are use to having conversations about science at the dinner table. They both love science and my daughter wants to be an environmental scientist when she grows up. Using words like “photosynthesis” and “carbon dioxide” and talking about hydroponics are no big deal for her, but telling me that the TV remote fell off the couch is something she finds difficult to do. All she seems to be able to say is “that fell” and point. She just repeats the phrase over and over again pointing in a direction until someone says the word that she is unable to say. The last time this happened, I was in the kitchen and she stood at the sink saying “that fell” pointing out the kitchen door. I had to go and find what had actually fallen. She also has a lot of trouble telling people what she needs. She uses a lot of hand signs for this purpose or single word phrases. She has told me that science words are easy to say, it’s the other words that are hard.

    My daughter was evaluated by her old school for speech and special education and that didn’t go anywhere. She is not a behavior problem and works so hard every night trying to keep her grades up. She usually does homework 3-4 hours a night with me sitting with her breaking down what is required of her in terms she understands. I do not require her to do this. This is something she has chosen, because she wants to do well in school. I sit with her helping to keep her anxiety down as she stresses easily. Once her anxiety escalates, the meltdowns happen. Because of all the hard work she does at home, the school isn’t seeing how she struggles with the work they ask her to do and they don’t seem to believe me when I advocate for her. I am trying to get her evaluated by her new school using her new diagnostic labels. I am hoping that we will be able to get somewhere this time. There is no reason a middle school student should have to work as hard as she does. I think my daughter can relate to Emma’s comment that people don’t believe her.

    • Erin, your description of the issues your daughter has with spoken language sound very familiar. A friend of mine said to me once that people take for granted that they can speak and do not realize that the sentence she just spoke took tremendous effort on her part. If they knew they would feel more grateful that she spoke to them at all.
      I think of her words often.
      I hope the school can be made to understand though it may take a number of times of you explaining before they begin to…

    • Erin, you say “under the new DSM-V criteria and she is now diagnosed with ASD, level 2 with an expressive language disability, along with Bipolar II with an overlap of ODD, dysgraphia, and dyslexia.”
      I read this diagnosing as a mainstream social-societal “caging” of your daughter; and read the details of the diagnosing as indicating an individual feral impulse to transcend and break-out of that caging.
      I then read your daughter’s motivation to study science as reflecting a determination to favour one side of a bipolarity.
      I read your daughter’s struggles with what you well flag with the phrase “that fell” as speaking to dissociation dynamics in your daughter’s developing.
      I’m somewhat autistic, dyslexic, dysgraphic, and my developing was and is much shaped by my mother’s bipolarity. I’ve then found it necessary to grapple with both aspects of what played out as bipolarity for my mother.; striving always to keep simultaneously in play what broke into bipolar opposites for my mother

      Science, if we for a moment work with my understanding, is a collective understanding held in being by social-societal dynamics. Our collective is currently much convinced by science. In principle the knowledge of science is complexly provisional; but in practice we proceed as if current scientific knowledge is proven. Science lies behind and authorises the Autism model, which many who are autistic now reject; this pointing up the complexity of science.
      To be an individual who radically questions and challenges science, involves fundamental difficulty. Your daughter demonstrates a determination to find relief and resource in commitment to science. But other items in your daughter’s diagnosis speak to personal capacity which could function to question and challenge the whole basis of science.
      Lack of expressive capacity across this latter aspect of herself, could speak to this aspect of herself not being as contextually supported as is her commitment to science. Your daughter may need support to apply words to the experiencing flagged in terms of ODD and bipolarity and ASD.
      She may be dysfunctionally striving to suppress and repress what is an aspect of herself, in setting out to lock herself into the scientific view of things.

      Please forgive me for any unintended offence my words cause.

      • Thank you. I take no offence and I do appreciate your efforts to help me. I must admit that I’m just starting to take this in and it’s pretty complex. I know I have a lot to learn. I am really searching for the best way for my daughter to be her best self and find a way for her effective self-expression. I am looking for signs that indicate what the best route to take may be and it is difficult to know. Sometimes we take the ‘try and see’ approach. Then I wonder: Is it the modality, or is it how we are using it, or do I need more patience, or should I try to follow her lead more, or should I push it a little more, or should I do it longer or am I simply hopeless at this? As you can probably tell, I am riddled with self-doubt. I am looking forward to joining the RPT group to see if that will give me, and her some insight.

  25. Thanks for your reply, I just sent you a friend request (Nancy Naylor). I would love to see more from the RPM. Thanks for all you do.

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