Autism And Stress

Lest you think this post is about stress felt by parents, let me quickly say, it’s not.  This post is about the stress I have observed my daughter experiences.  The stress she feels and that I (often unwittingly and unknowingly) exacerbate.  This is not about  beating myself up, but is an honest look at how my reactions can make matters worse.  As I’ve said before, it is my hope that as Emma’s mother I continue to make progress in my parenting, but also as a human being.  Just as I hope and expect my daughter to learn and progress, I hope the same for myself.

“We have to minimize her stress.”  This was something Soma Mukhopadhyay said during Emma’s most recent session with her.  It was in answer to my question about when to graduate from using a letter board to a computer keyboard during her RPM (rapid prompting method) sessions.  During the session Emma pointed to a letter, then Soma wrote the letter down, Emma pointed to another letter, and on it went until Emma had written an entire sentence.  This technique, of one letter pointed to, one letter written down, helps with Emma’s impulsivity, which is amplified when she’s feeling stress.  It was during this same session that Emma answered Soma’s question about whether she could feel colors, with, “Of course.  That answer, those two words spelled out so easily by my daughter, made me laugh and cry at the same time.

My daughter types and does things that astound me.  It doesn’t matter how much I believe in her competence, I am continually astonished, ecstatic and heartbroken all at the same time.  Astonished because of the ease and confidence with which she will say something like, “Of course” in answer to a highly complex question, heartbroken because for so long these were words I never imagined I’d hear, let alone learn what I am now learning about her.  I no longer believe these feelings are mutually exclusive to each other.  Now, instead of wondering whether it was all a dream, I celebrate the exquisite beauty of my child and all she does that constantly reminds me of just how vast and incredible the human mind is.  I am humbled, on a daily basis, in the best possible way.  I would not trade the awe I get to feel when in the presence of my child for anything.  Seeing my daughter defy every limited idea about her that has ever been uttered, including my own thinking, gives me tremendous hope for this world, for my own growth and for humanity.

I witness greatness when I watch her work and it is a beautiful thing.  So when she expresses upset, which I now am able to identify as stress, it breaks my heart in a way that it didn’t, before I understood.  What I used to think of as stubbornness or a temper tantrum or a form of manipulation, I now see as a product of the enormous stress she feels.  And I have to wonder, exactly how much stress must she cope with?  I have talked about what I perceived to be her “resistance” in typing, but am now beginning to think of it as less “resistance” and more stress.  Stress from how very difficult it is.  Stress from expectations, stress from making a mistake, stress from doing something different, and those are just the stresses I can easily come up with and relate to.  I’m guessing there are many more I am completely unaware of.

Stress is something that, when she is gripped by it, all systems seem to simultaneously crash.  To make matters worse, my stress level rises in direct proportion to hers and I am confronted with how unhelpful I am when I allow my stress to overwhelm me as was the case the other day.  My response to Emma’s panic was to panic too.  So much so that I could barely breathe.  “You have to calm down!” I instructed her, while my own sense of calm, shattered so completely, was a perfect example of what NOT to do.  It was the antithesis of modeling behavior sought and it reminded me of something my father used to say to my siblings and me – “Do as I say and not as I do!”  I think he thought it amusing, however I remember it as anything but.

There are times I cannot predict, when something happens, things I don’t know or understand, and suddenly my seemingly placid, happy child is in a turmoil of upset.  There is often a sensory component I’m unaware of.  During these times sentences are repeated that are obviously meaningful to her, but that I find confusing.  As her stress escalates, her ability to verbalize what’s going on plummets and my frenzied request that she “type it out” does nothing to alleviate the situation.  The longer all of this goes on, the more I feel completely ill-equipped to keep my stress level from going into the red, let alone help her with hers.  That Emma seems convinced I am, not only capable of pulling it together, but will be able to help her, is an example of my daughter presuming in my competence, which makes me all the more determined to work through my own issues and do better.  I owe it to her.

September, 2009

September '09

37 responses to “Autism And Stress

  1. Oh yes, yes, yes. The paths our daughters are now creating have many similarities. The last poem introduced in Emma’s English class was a Tennyson, the lady of shallot. Imagine my smirk when her teacher asked “and what family favorite film does the song version play in, Anne of green gables”.
    I truly know that I can increase my daughters anxiety tremendously. I must force myself to be mindful…to stay on task, one step at a time. This is not my nature. My nature is one level below the “flight of the bees”! I love that now I can look over at Emma and she is laughing out loud at my idiosynchracies! What a process we are living……

    • I’ve never seen the movie version of Anne of Green Gables! Now I may have to watch it with Em.

      I so related to the “one level below the “flight of the bees”. Oh yes, I know this level so well!!

      Laughter – the balm that soothes the soul.

  2. Marilyn Dixon

    Our children do feel enormous stress. Can you imagine how stressed you would feel if you heard the radio/tv blaring, conversations in the next room or even outside, squeaking fans, banging pots, water sounding like an ocean, and saw lights flashing, fans whirling, spots or dust particles floating in the air, felt scratching clothes, itching skin, aching or tingling in your hands and/or feet, hunger pains in your stomach, in addition to experiencing emotions like fear or lack of acceptance from others all at the same time, Most of us would feel stressed.if we experienced all our senses magnified at the same time like individuals with autism often do.. For my daughter, the stress overload can become so overwhelming that she has a seizure. I see that Emma is seeing Soma now, too. Kim went to her for a while to help her gain more independence with her typing. We had to stop after a while as Kim was having serious seizure issues during that time.. Kim hopes to go again some day. It’s pretty easy as Soma is located in Austin, just down the road. I suppose Emma sees Soma when she’s up there, but if you ever bring Emma here to see Soma, you are more than welcome at our home. I suppose you saw Kimberly’s Kickstarter project online. It won’t be long til she realizes her dream of a book of her poetry and art. Now, I just need to stay calm and unstressed about the process. 🙂

    • Marilyn – such a great detailed list of all that can go on. I started feeling stressed just reading your description!!
      We see Soma when she’s in NYC, which is once a month or so. But I’ve got us on a waiting list for this summer and am definitely booking a week in Austin in the fall.

      • Marilyn Dixon

        I need to get Kim on Soma’s waiting list. She’s been telling me she wants to go again. Our girls must get together when you come. Who knows maybe you will be here for Kim’s book launch or a book signing party that a lady is hosting in Westlake Hills area. Did you see Kim’s book fundraiser is almost completely funded after a little over 2 days!. That pays for publishing and today a lady said she is going to pay for the printing of 500-1000 books. Now, we really have to get this book all put together. Now, I am feeling stressed. 🙂

        • I shared Kim’s kickstarter campaign on FB just the other day!! So pleased to hear she’s almost reached her goal.

          I will certainly tell you when I know our dates with Soma!

  3. Ariane thank you so much for this post – you are verbalising many things i have been unable to verbalise to people around me. One thing jumps out at me – rather than allowing the situation to escalate to the point of you panicking when Emma is Feeling stress, maybe you could make an agreement with her – some kind of sign you both understand – that one or both of you needs a ‘time out’… this can be whatever works for each of you, but physically moving into a different space where each of you is comfortable while you both calm down and connect with what is going on for you. You could even use that time to write/type or whatever what comes up for you to show to each other. It can be a ‘rule’ that you create TOGETHER rather than an ‘imposed’ one on either of you that you take ‘time out’ – and give sign if that is needed – and only come back into the same physical space once you know you are each calm and able/ready to reconnect with each other. I am Feeling really strongly from my own experience that this is the fastest way to enable Emma tell you what is going on for HER when she is stressed, as it will alleviate ALL stress relating to expectations that she be present for you AND will give her the knowledge that you ALSO are working to understand what is going on for YOU – so she can also get to know YOU as well as you her. You could even create a ‘special place’ for Emma to go to when she is stressed which can be her ‘sign’ – if she does not have one already, which in turn will also help to create an environment that is more nurturing of her as an Autistic person if that is part of the problem. Hope this helps – please feel free to email me if you would like me to write more of what i Feel may be going on for Emma (the sitaution you write of is HUGE part of my own experience).

    • Thank you so much for writing this. I love the idea of coming up with a strategy together and not one person imposing a set of “rules” or whatever on the other.
      And I would love anything else you feel like sharing with me about your experience. If it’s better to email, please do: ariane@arianezurcher.com

      • Thank you for the email address ariane 🙂 I will definitely email you soon. It may take me a while to get my thoughts together though.

        I think negotiating ‘rules’ that HELP EVERYONE is actually one of the most powerful tools possible because it not only empowers everyone, it teaches people to listen to each other and take account of differences and also enables everyone no matter how old or able or whatever else to be treated as an equal human being. for Autistic people in particular who are living in a world that is ‘automatically’ too often not accepting of us and treats us as less than equal, it is a very liberating experience to have the balance of power restored in at least one part of our lives and enables us to gain experience of ourselves in the world as the equal and different whole intelligent human beings that we are… 🙂

  4. Your observation that her “resistance” to things like typing, etc. may in fact, be stress, makes so much sense to me. I’m sure I’ve realized that she doesn’t want to type or write because it’s difficult and it stresses her out, but there was something about pairing those words together–stress/resistance– that made it so much easier for me to wrap my mind around it. I’ve so often wondered why she doesn’t choose to type, why she isn’t excited to express her feelings, or read and learn new things, and I’ve often connected my bafflement with thoughts like: Why would she? She’s already blissed out! Why bother? But this notion of stress gives me a new perspective (if it really is the case!) and hopefully some new tools to use in helping relieve her stress.

    • I’m reading a book written by Char Brandl – See us Smart: FC case studies. One of the people using FC was very “resistant” but as I read the story it seemed really evident (to me anyway) that this was less resistance and more an indication of tremendous stress. As I read more I started thinking about Em and it just kind of clicked. I can’t “know” for sure, but it feels right to me. Glad you thought so too!

    • Just a thought re ‘why she doesn’t choose to type’ – does she have access to typing any time/place she is alone? Or it is always in context of somebody being with her/teaching her or whatever? If the latter – imagine how that would Feel to you… No criticism intended, but if you are so focused on resolving the problems you perceive her to have, that you are forgetting to create safe space for her just to be her and communicate her own thoughts unhampered by expectations or anything else just because that is what she is moved to do in a given moment, that basically sets her up ONLY to communicate on other’s terms, rather than on her own terms, as you are saying you want for her.

      I am not expressing myself very well. I REALLY do not mean this as criticism. It is in part Autistic confusion over ‘personal pronouns’ and specifically the meaning of ‘you’ that is making me Feel uncomfortable and unsure if what i write will come across as telling you you are doing something wrong, or (as i intend) to suggest an alternative to what MAY be going on but have no way of knowing for sure…

      If you haven’t already, try putting a word processor or whatever in her room and not expecting anything from her at all. Don’t even talk about it – just let her be with it. Don’t even let yourselves think about it – do you know that Emma is very likely aware of the energy of your thoughts and may even hear them? I did when i was a child. It used to drive me crazy becasue i did not understand waht was happening. It was not until i was in my early 30s that i understood – and only then because of witnessing my Autistic son as a young child.

      Let me just clarify lest i am freaking you out – when hearing people’s thoughts, i could not hear words. I just heard this stream of endless ‘noise’ – the same ‘noise’ that i hear in the outer world when people are talking, unless i REALLY focus my attention to recognise them as words and then REALLY focus my attention again to recognise what those words are and then REALLY focus my attention again to try to connect those words with what i am Feeling on the inside of me which is the level at which i UNDERSTAND things. I don’t hear other people’s thoughts any more but only because i figured out how to turn off my inner hearing at some point i cannot even remember now… i just remember knowing if i did not, i really WOULD go crazy because it Felt SO intrusive in my personal space to be able to NOT hear people thinking ALL the time – and it was worst of all at night when everyone was relaxed and letting everything they were holding back all day come forward to be processed…

      I don’t know if this is going on for Emma or not. Not suggesting it is. only that there are many things you are not able to see because they are completely out of view and she has no way of telling you. Mind you that is true for everyone – it is part of life 🙂 I know what i wrote about hearing thoughts may be freaking you/Ariane out but it isn’t meant that way. Although it was WAY beyond awful to live through that experience at the time, it taught me something profoundly imporant – that i could take care of myself when others could not, because in absence of anyone else even knowing what i was living i only had myself to turn to. And i learned to relax as best i could DESPITE the stress and eventually as i said i did figure out how to turn off my inner hearing. And although i have NO idea at what ‘age’ i did that, i do remember it as a HUGELY important moment in MY life with MYSELF becuase it was the first time i could actually RESOLVE a problem that no-one else could even see, or was even aware of and that had literally been making my life a living hell. Knowing i am capable of that has been hugely important more times in my life than i can count.

      i am 52 and even now there are very few words that in themselves have meaning to me – i am able to type and sometimes speak simply because i have learned to align the energies of words with the energies of Feeling which has taken me half a century to get to where i am now. My parents had NO idea of what i was living and still do not. I am trying to say, no matter what you think you know about Emma, she is truly the only person who knows herself and what she needs, and more than anything she needs space to discover for herself what those things are – especially as she approaches adolescence and begins to make the transition from childhood to young adulthood….

      Lol kind of a meandering post… wondering if it is too Autistically meandering and deciding to leave it. Because it Feels safe to do so 🙂

      • I am really glad you felt safe enough to leave this comment here and didn’t delete it. I read it with tremendous interest and appreciation. I took no offense at ALL!
        Em does have access to both her iPad and a computer that is in her room for her to do as she likes with both. Whenever I work with her I do give her a clear idea of when and what we will be going over. She often asks to do this at a different time than I have proposed and unless something forces us NOT to work when she’s requested we will do as she has asked.
        You are not the only person who has told me about knowing what others are feeling/thinking. Barb Rentenbach writes about this in her book. Bill Stillman has written a number of books about this very topic. I know of at least four other people, personally, who have told me similar things, with only slight variations on their experience, but the main piece, of being highly attuned to another to the point of actually being able to feel their words and thoughts is the same. This actually does not surprise me.

        I have always sensed that Em is extremely sensitive to her surroundings and I know she and I have a very strong and close connection. I feel I can “sense” her at times and even have had experiences of “knowing” what’s going on that I could not have determined from our verbal or typed communication. I have to assume or at least wonder that she doesn’t feel the same.
        Thank you again for leaving this here. I cannot tell you how much I appreciate it!

        • Thank you – i am glad it was of interest to you 🙂 Also SO relieved to know Emma has access to typing in her own space – just thinking about her not having it was connecting me to all the years i didn’t have space anywhere in the world for my own voice. I cannot bear the thought of anyone having to go through that. It has been and still is in some ways without doubt by far the worst aspect of my disable-ment in the world.

          Just a thought but have you ever thought of asking Emma what SHE wants to work on with you, rather than telling her what you plan to do with her? It may be too much for her to think about yet, but it may also open a door for you both in her learning that leads not only to her learning more easily but also empower her in beginning to take control of her own life, with you alongside supporting her. It will also give you a lot of insight (especially if you keep a journal of what you have worked on) into the way Emma works that you cannot possibly get while you are ‘dictating’ the curriculum – plus you can over time help her to see at times how learning what you can see will help her actually benefits her in the long run. That can be an extremely difficult thing for an Autistic person to learn because there are so many obstacles to learning from other people and ENJOYING the experience. Often it is because we cannot see the point of what is being learned so it does not connect with who we are in that moment and is just so much hard work, a chore, something that pleases other people but gives us no pleasure whatsoever – which can set up a pattern of aversion to learning and/or to people and/or to learning from other people.

          Yes, my sense too is that Emma is EXTREMELY sensitive. Just looking at her photos tells me that but so many things you have written about her do also. I have strong sense that you also are far more sensitive than many people – people who have strong emotions generally are – so it is not a surprise to me that you Feel that connection with Emma, or that you learn things from it that you cannot from verbal communication of whatever kind. If you would like, i can teach you how to open more deeply to your own sensitivity, and through that experience to connect more consciously with Emma from within. If you are open to this, i would love to gift you with that as reading your blog has really helped me and i would love to be able to give something back 🙂

          I will definitely email you sometime soon – in the meantime you can email me at lovingnonverbalautism@gmail.com if you would like.

      • Heart of autism – Thank you so much for your post. There is so much we can learn from people like you. I believe (although I don’t know) that my daughter can hear thoughts as you could. You have put it into words and I have to figure out how I can create as stress free environment for her with this in mind.

  5. I really appreciate the way you have reframed reactions and our oftentimes judgement about reactions (such as misbehaviour, or manipulation) and instead have paired it with stress and resistance. I believe this is a much more useful and productive way of looking at a reaction and working to understand and respond in a supportive way.

    And… yes… our own stress plays a factor. You have put that beautifully. I too am working to unwind mine from H’s… as this layering on is rarely helpful and is so frequently a barrier to being able to really listen to what my child is telling me.

    A wonderful article. Thank you, Ariane!

    ( A related poem from this past fall: http://30daysofautism.wordpress.com/2012/10/24/this-child-does-not-deserve-to-be-painted-with-my-stress-a-poem/ )

  6. I think you and I are so much the same on this, being emotional people and having to work so hard to not let our big feelings effect our sensitive kids. it always amazes me how much smoother our home runs when I keep myself in check.

  7. Excellent post. I think of it as anxiety – which is a form of stress. What so many don’t understand is that in times of anxiety children need comfort not discipline; They need to be around a calming force. – It’s not something I always remember but I’m trying! I can tell that you get this!

  8. Thanks TLS! Appreciate your comment.

  9. Well THIS post came at just the right time. We have been experiencing some “non compliance” at home when we are asking Nathan (4) to do some things. One big one has been doing his table time (working on writing letters, his name, patterns, etc.). He has been dropping materials onto the floor, squirming out of his seat, and (his favorite new tactic) insisting that he has to use the bathroom and then running into the bedroom to jump on the bed, followed by a screaming/crying/falling to the floor fit when we try to actually take him to the bathroom. Which is immediately followed by him saying he has to go to the bathroom. Which raises my stress level (and frustration). This post made me take a step back and realize that we are probably stressing him out by asking too much of him in certain areas. I think I am feeling like…it would be good for him to start school in the fall knowing _________, and then pushing him too hard to learn it. So, thank you for pointing this out. I am going to try to take a step back and chill out myself over the things I think he should learn and remember to pay attention to what he is telling me that he wants to learn, and how he wants to learn it.

    • Thanks so much for reaching out Beth. I think what you’ve written will resonate with a great many!

      • After giving this some more thought, I think that I may have embraced the concept of Presuming Competence with too much exuberance. With the mindset that “he CAN do it/learn it”, I neglected to take into consideration the pace at which this might happen. I need to work to find a balance for myself between these ideas (that he is capable, but not to push so hard that he is stressed).

  10. Thank you for sharing your experience, your daughter’s and the stress of autism for her and for the family. Sharing raw emotions can be therapeutic for the soul. Ariane I will be praying for you, your husband, Emma and your family. I don’t know the stress of autism but do know the stress of traumatic brain injury and disability. So you can keep in touch through my blog, Twitter or by facebook at Tylor Stingel for support.
    Blessings Tylor Stingel

  11. I so love your blog in everyway , it is the voice in the darkness crying out, Hey I am a person in here!! It is the validity that helps me keep going on my own journey with my children, please continue this Ariane and a major high five to beautiful Emma

  12. Perhaps this is a chance to respect Emma’s process? From what you’ve said here, I get a sense that you’re very concerned with why she’s upset, with identifying the source of her distress and and removing it if you can, which is of course Mom 101. I still have that instinct and my daughter is all grown up.

    But what I’m thinking is that Emma’s process for de-escalating her upset feelings might be atypical. Often, we tell children to calm down when they’re upset and this often works for typical kids. They have ways of getting a grip on themselves, often learned through modeling or instruction. But I can’t say that being told to calm down has ever been helpful for me. If I was having a meltdown or on the way to one and you told me “you have to calm down” my response would be FU and some other choice words. 🙂 Because it doesn’t work that way for me. The more pressure there is (real or perceived) to not be upset, the more upset I become, which as you pointed out can become a vicious cycle of panic feeding panic. On top of that, if my communication system is down, being asked questions or pressed to express myself just triggers a cascade of further malfunctions and if someone keeps pushing or seems upset by my nonresponse, a full-on meltdown is pretty much guaranteed.

    Maybe what I’m trying to say is two things and not one: what is Emma’s process for dealing with upset (independent of what you want or think should happen) and what can you do to support that? Rather than wanting her to tell you why she’s upset (she may not know – I often don’t immediately or find it too distressing to try to figure it out and/or communicate it), perhaps you can prioritize supporting her in whatever calming activities work for her or letting her perseverate for a bit, which can be a decent coping mechanism, even though it may look maladaptive. Then when she’s in a calmer place, you can try revisiting the situation to see if there was something that could have been avoided or changed to prevent that same situation in the future.

    Sorry, this got really long and I’m not even sure I made my point. (Also, I seriously hope this doesn’t come across as judgmental or any of the other negative things I’m thinking it could be read as – because, you know, communication disorder so I have no idea but I don’t mean it that way 🙂 )

    • No offense taken at all!

      It’s always tough to write a post when I have something specific in mind, but do not want to get into the specifics on the blog. So in this particular instance she was actually (it turns out) in a great deal of pain and was upset because she couldn’t pin point where the pain actually was or more accurately thought it was coming from one thing, when in fact it was coming from something else. None of this was known to me, I just knew she was experiencing some kind of pain. So trying to figure out the source of the pain was essential and also really stressful. But on a more general sense I agree with your points here and really appreciate your writing them!

      • Ah, okay, that makes sense and I can see why you urgently needed to figure out what was happening. It was hard to tell from your passing reference and I totally get not wanting to be specific about certain specifics. 🙂

    • Pressure to not be upset. That happens too, for me, all the time. (Even if it is only myself saying, I am in public, or in class, and I cannot meltdown here) and that very very very rarely has any effect other than more stress.
      And people asking me what is wrong, when I get to a stage where I am visibly upset to most people (people who know me well, like family or boyfriend can tell much earlier since they can pick up on my non typical signs/behaviors that show up when I get stressed) asking me what is wrong is only going to make things worse.
      Because I will get stressed about why things are wrong if I don’t know. Or how to say everything is wrong and it is loud and that person over there is coughing and the tiles on the floor don’t match and there is a fan and that shopping cart is squeaking and I am hungry and I don’t have the words and it is all wrong). Or not being able to explain it properly. Or not being able to pinpoint the one exact thing that is supposed to be wrong. Or being afraid other people will think it is ridiculous why I am upset so trying to come up with a better reason.
      The only talking to me that really works is (early) asking yes or no questions. And if I can’t answer them or my answers don’t seem to make sense, then stopping asking them. Giving me simple, one step commands. Because I don’t know what to do and I desperately want to. And I so stims can’t even remember my coping mechanisms. So thinks like take five deep breaths. Count backwards from 25. Sit down.
      And then once I have calmed down, I can sometimes help figure out what was wrong.

  13. Marilyn Dixon

    I read Kim your post. She typed, “There are wasted days when I feel stress,” After Kim typed this response to your post, she immediately laid down and refused to type. Then, she grinned. I guess she was giving a physical example of something she does when feeling stressed. 🙂

    • Oh I love that, she was helping you fully understand with visuals and a live demonstration!!

      Kim – thanks so much for telling me this and then demonstrating what it feels like. I can relate to that feeling!

  14. I’m glad you see Emma as a blessing because I believe all of us are brought into each other’s lives for a reason I believe I was brought into my parents lives to help them grow just like I believe Emma was brought into your life to help you grow.

  15. Hi there! This post could not be written much better! Reading
    through this article reminds me of my previous roommate!

    He continually kept talking about this. I will send this information to him.
    Pretty sure he’s going to have a great read.

    I appreciate you for sharing!

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