A Letter To You ~ By Emma

I asked Emma whether she wanted to finish the story she began about an otter or talk about something else.  She wrote:

“I want to talk about the New Year.

“This is a meaningful year because I am beginning to write about my ideas about autism and how people need an education in applying what Autistic people feel.

“Fear is non-living.  It cripples the mind and deadens the soul.  Raging beasts of pain masquerading as stims cause many to misunderstand.

“I am not without thought.  My forever beautiful mind needs nourishment all the time.  Autistic people are left to linger in a secluded world by those who could be helping instead of harming them.

“Please care enough to alter how you interact with those who may seem different than you, but who are actually the same.  We are all beings with similar feelings and hopes.

“Do not believe your fears.  They will lead you the wrong way.”

Emma told me she wanted me to publish this on the blog today.  Emma turns twelve this month.  I have spent more than fifty years learning what she already knows.  Em & Ariane on New Year's Eve ~ 2013    Em & Ariane on New Year’s Eve ~ 2013

 

61 responses to “A Letter To You ~ By Emma

  1. Emma ❤
    Thank you for your words! Lead on…
    Happy New Year to you and your wonderful family!

  2. The assumptions of a bigot’s smuggary others us both…the fools 😦

  3. Stunning. Thank you so much, Emma.

  4. Emma, I am hugging and squeezing you(sorry) and giving you lot’s of kisses. Adults of this world has a lot to learn from you sweet girl. I am so glad you are writing and expressing your thoughts and feelings. Thank you for being who you are. Much love.

  5. Holy Shi-cago! I’m always blown away by everything Emma writes, but today’s post is even more mind-blowing! The level of intelligence, sophistication, wisdom and compassion Emma writes with is simply astounding. Here is an 11 year old girl, who is so often treated “as a baby” by others, yet possesses an intellect that I’m quite sure surpasses my own. I sure as hell wasn’t writing with the poetic flair and insightfulness Emma does at the age of 11.

    “Fear is non-living. It cripples the mind and deadens the soul.”

    Fuggedaboutit!

    Ariane just came in while I was writing this and said, “I feel like I’m living in Alice’s Wonderland,” to which I replied, “same here, we have definitely gone down the rabbit hole.” In the background, Emma is repeating the same phrases over and over, and we both wondered whether the strain of writing this post put her into an intense verbal stim loop because of the effort it required to write it. Maybe Ariane will ask her and follow-up on with Emma’s thoughts on this.

    I congratulated Emma on her amazing post, but, like any parent, I was saddened and very concerned when she said, “Raging beasts of pain masquerading as stims cause many to misunderstand.” So I asked her if she is in pain every time she stims. She replied, “yes” but I definitely need more info on what this means to her and how we can best help her. Do any of our autistic friends out there who stim have some ideas they’d like to share on this?

    Wow! What a way to start the new year! Whoa Emma!

    • A lot of my stimming is definitely caused by discomfort or pain, usually sensory pain (like bright light, or loud or continuous noises… and yes those are not just uncomfortable, they can be very painful). But emotional pain as well. I do have happy stims, but they’re not as necessary to my survival and functioning. I need to stim to deal with overload from any type of pain, sensory or physical or emotional. So I think I understand what she means. But she might be saying something else… the only one who can really explain is Emma.

      • You know, when given a choice of yes or no, regardless of whether it is that black and white, requires the other to answer in absolutes that do not necessarily reflect a true or accurate response. I will definitely follow up on this, but I have a feeling (could be wrong) that the answer is far more complex than our vocabulary permits…

      • Oops meant my comment to be a reply to Richard!

    • Like a pain of my whole being intensity of awareness of each molecule of me – way too much hurting but yet not like a physical pain of surgery or illness but all encompassing intensity that must be relieved. stimming is a solution for this but then sometimes get caught in the stimming unable to stop…difficult to explain, but very real. The older i get the more I discover about how to be regulated better (sensory, emotional, movement – none of which my body regulates automatically) and can engage in proactive measures so that the intensity doesn’t visit me as often as it used to visit. Sorry if these words do not make sense. The trouble with trying to explain the realities of autism is that often there are no words yet developed by human beings to describe the phenomena that we experience. Then, when we borrow your words people walk away assuming something that isn’t true. It is like trying to use only the same five words to describe everything about every sunset past, present and future.

    • For me, stimming is connected to intensity of feeling – both emotions and sensory feelings. I have happy stims (bouncing, flapping, and squeaking), unhappy stims (hunching into a ball, scratching my hand, rocking), and neutral stims (hair twirling, foot bouncing). If a feeling is too intense, pressure builds and I have to stim in order to release the pressure and stay at a somewhat manageable level. If I don’t, I’ll get overwhelmed and will either meltdown or become very disconnected from myself. Even positive feelings can become painfully intense if not let out, so I bounce around the house squeaking. Any feeling can become intense to the point of pain, really – it’s an intangible, all-over sort of pain. Stimming (for me) helps regulate the intensity of feelings.

      I hope this helps give a bit of insight!

  6. In never could describe with words as well as Emma. I finally wrote the pain was everywhere and nowhere at the same time–as if every cell in my body was screaming and only I could hear it.

    Keep making those connections Emma, but beware of overstim and “trying” too hard…it will come naturally.

  7. Emma has the wisdom birthed from the years of contemplating solitude and silence. She speaks with her finger what her soul feels and now we contemplate a future of insights as deep as her eyes are bright with newly revealed knowledge.
    A voice is not always what you think
    It is easy to be misunderstood and lonely when thinking and speech don’t come in synchrony, or when one never allows the other to come

  8. This is really well-written. I think “not believing my fears” is going to be my only New Year’s resolution. Thanks Emma! And a Happy New Year to you and your family!

  9. Amazingly written. Unbelievable wisdom. The world benefits greatly from your words, Emma. I am humbled and honored to read them.

  10. Wow! Emma’s words affect me deeply every single time. Wow! It’s a new perspective I get from her much like the wise words of the Dalai Lama or other great philosopher. She literally blows my mind ALL the time!!! Wow!!

  11. beautiful, thank you for sharing her words with us, what an inspirational child!

  12. Thank you both for sharing your experiences, feelings and wisdom with us. My wife Kristin and I are so incredibly fortunate to have Lucas, our eight year old boy, in our lives. Reading your blogs and stories helps us to understand each other more deeply and to value our differences and learn from each other.

    Like you, Emma, I know that Lucas is so in tune with the world and wise in infinite ways. My sincere hope is that we will deepen our understanding by presuming competence, listening and watching, and following his lead.

    I look forward to reading more of your thoughts in 2013.

    Happy New Year!
    Greg

  13. Pain . . . If an Eskimo has over 100 words for snow; an autist may have over a thousand words for pain. Just thinking. Such as, the pain of extreme joy. The pain of disconnect. Last night for me was completely magical. Painfully so.

    • (((Steve))) Love this! I think this just may be true for Em too. I will ask her…

    • yes exactly steve and then if we co opt the words of the world it is so rudimentary, yet they take these elementary inaccurate words – the best they have to give us to use – and turn our expressions into something we do not at all intend. Then they assume they know our experience because we have used their rudimentary words – which is really sort of like a crap shoot in terms of how close it might find meaning to our intent – but in the end it is they who always know what we say and what we mean. It is difficult to use any words, it demeaning to have to use rudimentary words and disheartening to have others assume our intentions based on their set up of limited words, but it is the system we have to borrow to be allowed to play a small part in the world. Words are everything and words are nothing. Words are a blessing and a cursing. Using them is exhilarating and depressingly debilitating. Like a pendulum of yearning and dying of spirit building and draining inside the cage of our body encapsulating our soul. and thus the solution of stims to maintain equilibrium in a world of intensity where words are so limited to explain the effects….but then who are we, banal auts, to know what we think or how we feel the world tells us?

  14. Reblogged this on jet black living… and commented:
    My young nephew has sensory processing differences, which means he may have some difficulties learning in the same way as others. He does not have autism, but neither is he neuro-typical (NT), so I have been curious to understand differences and even explore my own point on the neuro/processing spectrum.
    I came across this blog, by a mother in collaboration with her autistic daughter and have been following it for some weeks now. Each time I read a new post, my heart almost bursts. So I want to share with you, just to widen knowledge, understanding and break down a few more barriers.
    Thank you, Ariane and Emma. x
    And a small bonus – it has nothing whatsoever to do with myeloma or cancer – Phew! 😉

  15. Do not believe your fears – they will lead you the wrong way. So profound!
    I hope you and Emma are both okay with me re-blogging this? Thank you again for sharing so intimately and compassionately. x
    And love Steve’s input above about pain. Thank you too. x

  16. Hi,
    Philip (who will be 11 in March) wrote a post (called Autism and Trials) similar to this in our blog. Here is what he wrote:
    “I am in pain all the time.
    I hear every sound at one volume.
    I see people’s taunts and I am fearful. (When asked what he meant by taunts, he spelled “angry faces.”)
    I am each day made to feel like I am not intelligent.
    I am each day made to feel I do not matter.
    Often I am so terrified of senses too aroused.
    I am tired of attacking stims all the time.
    I each day have strong emotions that affect my relationship with each person.
    I each day need someone so patient to work with me.
    Each day is so hard.”
    When I asked him today if he related with what Emma wrote, he indicated yes. He explained pain is from multiple sources. He spelled “I am smart yet people do not believe me. Teachers underestimate me.” He mentioned stomach pain from eating certain foods (for him, it is gluten). In the past, he has told me stims help with dealing with stress, but too much stimming makes him sad because he knows it isolates him from people yet he cannot stop sometimes.
    Even though it breaks my heart to hear Philip say these things, it is wonderful that he can express it, be understood, and receive the comfort and empathy from those who love him and from those who have been in the same situation. I hope it will comfort Emma to know Philip understands her. After reading Emma’s post and discussing it, Philip has these words for Emma: “I am with you in your beliefs. I am applauding you for getting your feelings out.”

  17. Emma you have so much to teach through your stories and wisdom. Happy new year to you and your family!! Keep on writing, you have a whole world of readers. 🙂

  18. LOVE LOVE LOVE So excited to witness the beginning of this journey 🙂 Go Emma Go!

  19. Oh wow! This is amazing…made me so emotional. I’m so glad you two shared this with all of us. Non-verbal has certainly proven to me that it doesn’t mean one has nothing to say. What a year of “Emma’s Hope Book” this will be! Can hardly wait!

  20. “Fear is non-living. It cripples the mind and deadens the soul.” — for me this resonated so strongly with the Litany Against Fear from Frank Herbert’s Dune: “Fear is the mind-killer. Fear is the little-death that brings total obliteration.”

    I’m running out of superlatives to describe my reactions to Emma’s writing: she goes from strength to strength. She paints such a vivid picture that allows others to experience her perspective: what a stunning demonstration that speech is unnecessary for communication. The hard work that all of you are putting in has led to this point; I can hardly wait to see how things progress over the coming year. Utterly awesome!

    • (((Alex)))
      “what a stunning demonstration that speech is unnecessary for communication” YES!!
      Happy New Year Alex and thank you for all your wonderful comments!

      • ❤ Thank you Ariane, Emma and Richard for allowing me to share your journey. Wishing you and all your family a happy 2014!

  21. Dear Emma, I want to thank you for your beautiful words. They made me cry. I have a wonderful son, as yet non-speaking and we are only just starting out on our journey with him. Your words cause me to pause and question myself. Am I altering how I interact with him? Am I remembering that although he seems different he is actually the same? Above all am I remembering not to believe my fears? You have distilled so much wisdom in just a few lines. Your writing has so many layers and I get something new from it each time.

  22. booksonaspergersyndrome

    Emma is a caring and extremely intelligent girl. there are a lot of grownups who can learn plenty from her. “my forever beautiful mind needs nourishment.” she knows how smart she is. but stims arent necessarily painful. they arent painful for me. every person on the spectrum is different, and they might be painful for some.
    yes, fear is crippling. it wont let you see the real person. it blinds you. every word is true.

    • Thanks so much for your comment. I am so curious to talk with Emma more about stims as I interpreted that sentence to mean stims were not necessarily painful, but that they were often the result of being in pain.
      More will be revealed!

  23. I’m simply amazed by your writing, Emma. Thank you so much for putting the effort into writing this for us. Your words affect me deeply, and I am in awe of your strength and wisdom.

  24. Wow on so many levels, Emma is an amazing writer with such profound thoughts and insight !

  25. Pingback: Lørdagslinks | Autismetanken

  26. Reblogged this on Winarno De inlaander Blog.

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