Yesterday Emma wrote, “Why is my mind autistic and yours is not?”
That sentence took over two minutes for her to write. I say this as a factual statement so that people reading this have a better understanding of the enormous effort and energy it takes for my daughter to communicate. If it took everyone a few minutes to communicate a single sentence, perhaps we would be more thoughtful about what we said and wrote. Two minutes. With someone like Soma, Emma is able to write much more quickly, but I am fairly new to this (I’ve been working with Emma on an alphabet board on a daily basis since the end of September) and so with me, it takes longer. With someone else it may take even longer still, or she may not be able to write more than a single word. But the more salient point is, that sentence is gold, and worth every second it takes for her to point to one letter at a time to create words and then whole sentences.
Until we found this way of communicating, we were left guessing about Emma’s likes and dislikes, what interested her, what she was curious about. And while there were a great many things we knew or believed we knew without her telling us, there was also a great deal more that we did not know or understand. For example, I was astonished to learn last week that Emma was curious about Africa and wanted to know why so many of it’s inhabitants are poor. Later I asked her if she’d like me to read about an African photojournalist, Echwalu, whom I love and whose blog I follow, Echwalu Photography . She said she was interested. We have since begun subscribing to National Geographic and I am now reading articles from the New York Times to her.
“Why is my mind autistic and yours is not?”
So I did my best to explain that no one actually knows the answer to that question. I explained that most people believe genetics plays a role and that though I am not autistic, I do share a great many “autistic-like” traits. I went on to explain that there is more about autism that is unknown than there is known and then our session time was up. Emma went to listen to music while I thought more about her question, and resolved to read to her the Markram’s, Intense World Theory. I thought about how our brains differ, but also how much they are alike.
I thought about how relatively easy it is for me to communicate and how I take most of my communication for granted. In fact there is so much I take for granted. I thought about how easy some things are for Emma, things that I am not able to do, like singing on key, being able to remember a melody and imitate it note for note. Her ability to absorb knowledge without having been taught, like multiplication, division, vocabulary words, to name just a few.
This idea that Autism is a massive list of deficits needs to change. The truth is we, non Autistics know almost nothing about Autism and what it means to be Autistic. In fact, the human brain is constantly astonishing neuroscientists. To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.
I wish I had an answer for this Emma, I only know that you have an amazing and wonderful mind. I hope it gets easier for you to tell the world what you are thinking in the days, weeks and years to come.
Interestingly, my daily science newsletter from Ray Kurzweil has an article (http://bit.ly/1fEjfXW) on a recent study that affirms the basic hypothesis of Henry Markram and Kamilla Markram’s Intense World theory. I don’t agree with all the conclusions they inferred from the data (that it supports the idea that the nature of autism is essentially introspective), but I most certainly concur that there is much more going in Emma’s brain than mine. The 42% increase in activity is probably a lowball estimate in this case!
AND the current issue of National Geographic is all about the human brain and how incredibly intricate it is and how we have a long long way to go before we have even a better understanding of it, let alone can make the kinds of claims we hear all the time about what this or that actually means!
I have just written a post about the papers reviewed in the article linked my Richard. http://www.mfw.us/blog/2014/02/04/quantitative-support-claimed-for-the-intense-world-theory/
Please keep in mind that my comments are based only on press releases, and I have not yet read the original research. I may have been too harsh, but these were my initial impressions.
I may join Ashleigh Brilliant in saying “My opinions may have changed, but not the fact that I am right.”
I do agree, though, about the introspection thing. That makes no sense.
Nice analysis! I particularly like that you highlighted this quote from the article:
“They showed that autistic children’s brains at rest generate more information than non-autistic children. This may explain their lack of interest in external stimuli, including interactions with other people.”
This “may also explain” that the scientists had tuna salad sandwiches for lunch! The conclusion extrapolated from the data about “the lack of interest in external stimuli” can in no way be validated by the information compiled. They could have just as easily wrote: “This may explain the higher average intelligence and increased sensory sensitivity.”
I thought your commentary was spot-on:
“This may be a bit of speculative over-interpretation. I’m not sure that their observation (assuming it can be verified with larger samples, and, importantly, with adults) actually “explains” anything, especially a “lack of interest.” This interpretation strikes me as an all-too-common lack of theory of mind by the researchers. They are attributing their own state of mind to an autistic child because of externally observed behaviors. What is going on inside the autistic mind may not be predictable by such a simple analogy.”
Why Emma, because you’re more awesome than we are!
Reblogged this on thespectrumscene and commented:
Oh, wow… to quote from the article, “To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.”
I love your statement, “To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.” I absolutely could not agree more!!! I’d like to repost this on my blog: http://thespectrumscene.wordpress.com/
I initially did share it, but then thought perhaps I should ask if that’s okay, so I took it down & commented.
Oh no, go ahead and reblog it. Thank you so much for asking though!
I wanted to let you know I nominated you for the dragon’s loyalty award! You can check out the entry here:
Because a great change is needed in the world and Emma you are going to make way for this beautiful event 🙂 ❤
Forgive me for saying this Ariane, but my son’s inability to communicate (at this stage) either verbally or in writing is the one thing I wish I could change. I suppose I can, to a degree, change this. I can teach him RPM, and I can teach him how to type, but the struggles he faces with regard to basic communication break my heart. I know that he, like Emma, has a lot to say, and his struggle to share his deepest thoughts, his deepest desires…it pains me. How do I, as his mother, make peace with this? This is my struggle. Thank you, Ariane. xx
Merry your words are moving. I like Emma’s question, “Why is my mind autistic and yours is not?” I like the question because it is a living question, asked by a living person, a person some of us feel we know through the medium of what is flagged as Emma’s Hope. A living question to which there are myriad good answers; they born and borne in other living people. In all this we have relation and communication, it playing out in all sorts of ways. Your saying “the struggles he faces with regard to basic communication break my heart. I know that he, like Emma, has a lot to say, and his struggle to share his deepest thoughts, his deepest desires…it pains me. How do I, as his mother, make peace with this? This is my struggle”, is then as alive a part of this vibrant relating and communicating whole, as is Emmas’s voicing of her question.
The living position-taking you eloquently speak-of, is itself an action of communication. A communicating your son can make use of. You exemplify the world as it has to be to hear what your son communicates. You exemplify the effort to be made. You mirror to your son what communication is and does, when tailored for him. You are researching what the next moment of evolving communication might be. All of this communicates itself to your son, supporting him in discovering what expressive communicating could be and do for him.
Written words are a wonderful and powerful medium of communicating, but written words are then a small part of the living communicating we all do all of the time with all of our person.
I hope the world proves kind to you and your son. I suspect he is very fortunate to have you as a mother.
Colin, you are a good, kind, human being. The world is a far better place because of your existence. I am so grateful to read your words and know you are here.
(((Merry))) – you have just described the experience of every parent I know including my own. There is nothing to forgive! Absolutely nothing.
I move in and out of being at peace or perhaps it’s more accurate to say I have moments of peace. Being able to communicate with Emma through words is really, really tough for her and as I’ve written, she cannot ask me questions yet, though I know she has a great many and hope one day she will.
The only thing I know to do is try and stay in the present, work as hard as I can to practice working with her (doing RPM) and make sure I also spend time communicating with her through her preferred ways, which do not involve words spoken.
Accepting life on life’s terms is an ongoing process… for all of us…
Thank you, Ariane and Colin. You have both given me a much needed boost, and I am so grateful that I can come here for support. Colin, you made me smile–and cry (a good cry!), and Ariane, you have reminded me to take things one day at a time. When I try to forecast too far into the future is when my fear is the most keen. Thank you, as always, for your and your friends, gentle reminders. This page is what keeps me going. 🙂 xx
Dear beautiful Merry, I want to echo and amplify what Colin said, and add my own self’s voice to it. For some of my friends it’s Soma’s style of writing, for some the Syracuse way; my friend Eric and others like him don’t write or talk much but communicate through gesture; I spoke for many years before really learning to communicate any of what was in my heart, a skill I learned in theatre arts: but almost everyone Autistic I know has a key feature in common. We take in so much more than we can express. Your son thrives inside in the knowledge of your love, in the knowledge that you see him. Love, Ib, a late bloomer xx
When I left that comment, I had no idea I would find myself on the receiving end of so many beautiful sentiments. Thank you, Ib–my second “good” cry of the day! To know that my son thrives in the knowledge that I love him, that I see him, is immensely reassuring. Thank you for that 🙂 xx
Merry, I have a mostly non-verbal son, and I work at reaching peace with this too. I love what Colin says about the written word being a small part of communicating. It is so between me and my boy, and I’ve learned to “listen” to his eyes, his body language, even the tone of his laugh to understand what he’s trying to tell me. I think the most important thing I do is try not to think about the future too much, to remain present. It helps. I hope everyone’s words helped you too!
Their words did help–and so did yours. Thank you 🙂
If you will forgive the religiosity of my sentiment, I do genuinely thank G-d that there are parents like you and people like Emma – you’re living proof that we as autistics have amazing things to give the world, especially when we have an environment of support and hope to flower in. Emma seems like such a bright kid – but it’s with your help that we get to see it.
Pingback: Lørdagslinks | Autismetanken