How My Fears Drove Me To Pursue a Cure

A year ago if you’d asked me what my single greatest fear was, I would have told you it was what would happen to my daughter when my husband and I both died.  This fear was so worrisome, so looming that I often stayed up at night worrying.  Well meaning people would reassure me that “things will work out, they always do” or “group homes aren’t so bad, many are run by loving, caring people”, but none of this gave me solace.  My fear was the driving force behind my desperate pursuit of various medical interventions and treatments for my daughter.  This fear, more than any other was what drove me to search for a “cure”.  When I thought of my daughter’s future I saw one of those dark, formidable, gothic institutions, now used as set locations for horror movies.  Once my mind had latched on to that visual image my fear became so overwhelming, my throat so constricted, my body so awash in terror I would literally shut down, like an overloaded circuit.  Fade to black.

So what changed?  I began to read things like this –

Amy Sequenzia, a non-speaking, writer, poet, Autistic self-advocate from her poem Feeling Good:

“Feel the warmth of another soul                                                                                                   Ban the thoughts that block the light                                                                                           Refuse to hear what hurts, listen to the                                                                                    cry for help behind it

Well-being, feelings of unity                                                                                                             We are all the same”

Julia Bascom from her blog Just Stimming, her post Quiet Hands:

“1. When I was a little girl, they held my hands down in tacky glue while I cried.

5. When I was a little girl, I was autistic.  And when you’re autistic, it’s not abuse.  It’s therapy.”

Again from Julia, her post, The Obsessive Joy of Autism:

“If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”

The Third Glance, Words and Growing up Autistic: On Nature, Nurture and Abuse where she ends with this:

“But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.”

There were so many others, so many voices out there, somehow reading these blogs calmed my fears enough that I was able to begin dissecting them.  I was able to pause, even for a moment, allowing me to ask, what is this?  What is this fear really?  And although my immediate answer was that these were fears based in very real, logical assumptions, I was able to see that they were just that – assumptions.  They were still not reality.  Not yet.  I was also able to realize those fears were causing me to act in irrational ways.  My thought that the fear was a healthy, natural response to what I believed to be the reality of the situation, prompting me to pursue all kinds of risky, unproven and untested “treatments” for my daughter’s autism was taking all of us down a dark, dark path.  That fear caused me to behave differently toward her, but I couldn’t see that until I’d stopped and saw how my behavior toward her changed.  When I was able to stop, just for a moment and examine the fear, the fear began to fall apart.

My fears were based in things I assumed were the inevitable consequence of what I believed my daughter was or wasn’t capable of.  But this was not based in fact, I don’t have the ability to see inside my child’s mind.  In addition my fears were clouding all the things she was doing that I ignored or couldn’t see or hear.  Every single day, my daughter displays her vast intelligence.  When I read the writings of Autistic people occupying every point on the so-called spectrum, I began to see that my assumptions, what I had assumed I knew and believed were not based in anything other than that.  It was at that point that I realized I had a choice.  I could choose to believe in her incompetence and the inevitable outcome this perceived incompetence would take us or I could choose to believe her competent, making that looming horror no longer a given.

As I wrote recently in a comment to someone,  I chose the latter because to do otherwise and be wrong would be far, far worse.  This is something I cannot risk or would be able to forgive myself for.  But there’s another piece to this that is also important, and that is when we assume great things are possible, great things tend to happen.  It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry.  My belief in my daughter will not change the very real challenges she faces, but it does and will help her far more than if I do not.

I’m off to the AutCom conference!

36 responses to “How My Fears Drove Me To Pursue a Cure

    • In case anyone hasn’t heard me give this woman ↑ praise (I know it’s hard to have missed because I talk about her ALL the time) here’s a little more… I met Ib last spring after I’d read both E. and Julia’s blogs. Ibby, more than any other single person has helped me. Ibby has helped me come to terms with not just my guilt, but has given me hope, guidance, encouragement and support. Ibby has helped me become a better parent to my daughter. I love this woman more than words can convey.

  1. Love, love, love where you are and where you are going. It is exciting to read and I am beyond happy for you. I piggy back on Ib’s comment… you go girl! 🙂

  2. Pingback: How My Fears Drove Me To Pursue a Cure « Raising kids with diagnosed/undiagnosed autism

  3. I was in the same “cure” camp with Ariane from the time we got the diagnosis until Ariane discovered the blogs of adult autistics and showed them to me. How could I not be? When you get the diagnosis it comes with a complete kit of demoralizing statistics, panicked desperation and an urgent agenda demanding a full head-on assault.

    It only took a few posts like the ones above for the light to start shining in my head and heart. What I read was so wise, brilliant, passionate, funny (yes, sarcastic funny), that it completely upturned everything I had learned previously from the “autistic community” which really wasn’t the autistic community at all! All the voices came from doctors, scientists, researchers, psychologists, speech therapists, learning specialists, educators, reporters, pundits and other parents like ourselves that were in the same boat — having a child with an “incurable, devastating, illness.”

    We tried everything we could think of to cure Emma. Then suddenly we met all these wonderful people who defied every stereotypical definition of autism — deeply compassionate, incredibly insightful, reflective, hysterically funny. Now we see everything through a brand new pair of glasses — a nice new rosy pair. Life isn’t grueling anymore, we still do everything we can to help Emma in every way possible: reading, writing, math, social issues. But we don’t need her to be cured. We just want her to be happy.

  4. You have a sincere understanding of your daughter that too many parents will never have. That’s amazing, truly. Emma is so young. She’s obviously growing up and already becoming quite a talented young woman, but still, she is so young. She has so much time to explore and learn to understand her world before she must manage her own way in it. She has plenty of time… so given the opportunity, I’m sure she’ll do fine.

    • I believe it was you who replied to a comment left on someone else’s blog about how they “knew” their child would never live independently. You said something like “you know no such thing.” I’ve not forgotten that. It is what I say to myself whenever I fall back into fearful thinking. It is the thing I remind myself time and time again.
      Now I will add these kind words of support and encouragement to the others. Thank you for them. They are gifts.

  5. Chou Chou Scantlin

    Yes! My heart is full from this wonderful post, and the sweet, wise, and supportive comments of everyone! Emma faces many challenges, and must believe in herself. It starts with you believing in her, her capacity for joy, and the joy she is able to give others. I believe that the key to happiness is to find your gift, and give it away. You are helping Emma find hers, and you have found yours, Ariane. Thank you for giving us so much! Best angels your way at AutCon ❤

    • Chou Chou! Thank you. You are such a wonderful example of “the key to happiness is to find your gift and give it away.” Thank you for being a wonderful role model and reminding me what is possible!

  6. Another beautiful howl!

  7. Beautiful entry and picture! :O) Isn’t it nice to be able to just breath…. 🙂

  8. Neither you nor Richard needs to feel any guilt about having wanted a cure or pursued it. In the usual parental panic timeline you moved remarkably fast from that to listening to autistic people and celebrating the things that are wonderful about Emma. I have since finding your blog sometimes used you as an example when generic parent bashing happens to show it is possible and important to get parents to listen.

    With the sort of support and acceptance Emma gets it is hard for me to imagine her not doing well over the long term. Compared to a set of all children she is still ahead of the game from what I can see as far as the solid base her parents can provide for her. It will be challenging for sure but by the time she actually needs to carry on without you she will have all that love, and acceptance and the courage that goes with it to do so.

    You would both have been doing a great job had that simply been where it ended but you have encouraged others to move along that road.

    • This is such a kind message, Gareeth and I appreciate it more than I can say. “It will be challenging for sure but by the time she actually needs to carry on without you she will have all that love, and acceptance and the courage that goes with it to do so.” That is the sentence I will conduct to memory.
      BTW – I am really pleased that you mention our journey to those who may have lost hope. I know I am but one of many parents who have been transformed by the words of those who are Autistic.

  9. This is such a beautifully written, uplifting piece that I’ve hesitated to even comment cause I don’t want to come across as negative. As everyone here knows, I might be making progress, but I still have a long, long ways to go before I get to the point that Arianne is at. I feel like I’ve spent the last ten years with a blindfold on, being spun in relentless circles. Arianne has put her hands on my shoulders, stopped the spinning, and took the blindfold off. But I’m still dizzy and feel like I wanna puke, and need help being pointed in the right direction. 😉

    Arianne, your biggest fear a year ago is still MY biggest fear, and it’s a valid one. I have read all the blogs here from all these amazing adults on the spectrum. It gives me hope, where before I had none whatsoever. It doesn’t change the fact that my child cannot speak, read, or write. Forget “cure”. I could care less about a “cure”. I just want her to be able to be functional, and happy. Whether she ever lives independently, or not.

    I try SO hard to assume that she understands everything we tell her, that just because she doesn’t speak doesn’t mean she never will, that her autism isn’t a sentence to a life in an institution as an adult. But our moments of hope are few and far between, and right now I’m just so LOST and confused as to what we should be doing to help her.

    What do I do when I assume she understands me, then runs away in a public place and gets lost? What do I say at her parent/teacher conference tonite when she tells me her aggressiveness in the classroom is getting to be more than they can handle? How do I combat the feeling that I’ve already spent the last ten years doing her irreprable harm because of my behavoirs and actions?

    This is exactly why I need everyone here so much. This is exactly why I keep returning, even though some days it’s hard. This is where I need to be, if there is any hope for either one of us, at all.

    Thank you to everyone here for putting up with me!!

    • Angie – First of all, I am just so glad you keep coming back! And here’s a bucket in case you need to puke! 😉 Second, (I think you already know this, but I’m going to say it anyway) ALL fear feels valid. That’s why our fears are so powerful. And that’s also the point. Because they feel valid we then do x, y and z. But fears, particularly these kinds of fears, which are rooted in our ideas, are limiting. Third, believing in your daughter will only lead to good things or put another way, believing in her will always be better than not believing in her.
      And lastly, all of this takes time. Peyton Goddard did not begin communicating through typing until she was in her twenties, same with Emma who occasionally comments on this blog. There are countless numbers of people who are non-speaking who began typing to communicate as ADULTS! I know this may not be what you want to hear, but the best help you can give Marisa is to help her learn to read and write. I’m going to ask around, but in the meantime, there is a terrific website called Reading Kingdom, that Emma LOVES. It’s a site teaching literacy to kids. You do not need to speak to use it. I think you can sign up for a free month trial period. See if she has any interest in it. Here’s the link: http://www.readingkingdom.com

    • Angie, my 5 year old son cannot speak and very literally is the kid who marches to the beat of his own drum. He desperately wants to be left to his own devices to figure things out on his own and becomes FURIOUS if anyone interferes with him. I tend to prefer to figure things out for myself as well (easier for me to focus without being interrupted by another person talking at me), so I can get this behavior and back off. However, we homeschool my son so I know that he has the entire day to work things out for himself, and he will come for help every once in awhile (maybe 1 out of 100 projects, lol) I am intensely private and easily distracted… in fact, I had to stop typing for a minute there because my husband came up to me and started rubbing my shoulders. My train of thought is entirely disrupted by such things and while I know he is just being awesome, it is mildy frustrating to me. But I can just wait and then resume. I think with my son, he CANNOT just wait and resume, partly because he is still a child and just doesn’t have the patience or self-control, and, of course, because all of his frustrations are amplified by sensory issues, literal thinking, and NOT BEING ABLE TO TALK.
      I don’t have any answers, but reading posts like your, I feel your frustration and sadness, and just want to share what someone else’s experiences have been with a non-speaking child on the spectrum. As mysterious as my son is, I *get* him… I really do. So I can put myself in his shoes and imagine why he acts out when he does. I know that the frustration of not being able to speak cause him immense anger and sadness sometimes and overwhelms him terribly, exacerbating any other thing that’s going wrong for him at any given moment, and my heart breaks everytime he breaks down from this frustration. (I apologize for rambling a bit, but my children keep interrupting me, and having a very linear thought process, ti is hard for me to stay on track at times!)
      I guess I am trying to suggest that perhaps your child is becoming increasingly worn down by speech frustrations? I dunno… this is a big reason we keep Lucas at home though… He is SO pig-headed about doing things himself, if he was in a school setting I can imagine easily that he would be *VERY* difficult for whoever ended up with him in his class. I realize this is not something everyone’s circumstances can support, but we homeschool our other children too, so this was not a big stretch for us to have him home too… just a , umm… new kind of homeschooling adventure for us as a family.
      I know it is hard, and I know it seems hopeless at times, but like Arianne, I find SO MUCH hope and insight in the writings of Autistic Adults. And I always operate on the assumption that Lucas is listening to me and understanding everything whether he acknowledges me or not. And I try to remember to not let it hurt my feelings as a mom when he seems to be ignoring me completely. I read another blog post this morning after reading Arianne’s, and it immediately made me think of your comment, so I wanted to share it with you:
      http://pddworld.blogspot.com/
      Things like this, they give me hope, and keep me grounded, and get me through the heartache of watching my son struggle. I know you know that you are not alone in your circumstances… I hope the knowledge of that can give you the hope you need when you are feeling that there is none left. ❤

  10. wonderful gift of hope…

  11. She’s been having some success at school with a computer program called TeachTown? I’m going to ask more about it tonite at parent/teacher conferences, and meanwhile, will be sure to check this site out.

    I agree, the focus should be on reading and writing. Since she can’t read “aloud”, I try my best just to get her to use the picture/word system on her Alt Chat.

    • I know if I tell you what a good mom you’re being, how I know how hard you’re trying, how great it is that you keep clicking on links and reading and trying the stuff I keep sending you, you’ll dismiss it, so I’m just going to say this instead ((((Angie))))

      And then that whole sentence that I began with, you can’t really respond to one way or the other because I didn’t really say it… 😉

      • Conferences did not go well. She is being very aggressive with everyone, today she scratched a kid and broke the skin. It is only during the times they are trying to get her to do her wprk. Left to her own devices, she is perfectly happy. They have no suggestions on what to do, either. This is getting scarier the older she gets.

  12. I am so glad for your writing.

  13. What kind of work does this happen for Angie? How are they trying to get her to do it? What does she use to do that work?

  14. Was nice to meet you. You are tanner in real life.

  15. Finding a cure is part of the journey of parenting autistic children for many of us. I’m glad that it is not the end of the journey, and so many of the many (including me) get past attempted-normal-making and but-they’re-supposed-to-seeking, to embracing our children as they are. (The journey to acceptance of our children and ourselves is the theme of my just-released book, “Swan Mothers: Discovering Our True Selves by Parenting Uniquely Magnificent Children.” I’ll send you a pm asking for a review.)

  16. Pingback: “Love Not Fear” | Emma's Hope Book

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