“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.” ~ Emma on the topic of the three stem cell treatments we did in 2010
Fear.
This post had to begin with Emma’s words.
I’ve written enough to fill a book on fear and where that took us. Stem cell treatments, spending all night on the internet searching for the next great “miracle” cure, taking my child from one specialist and doctor to the next, this is where fear took me. I’ve deleted a great many posts where I express my tortured fear, but if you go to the first post, the post that began this blog almost four years ago, you will see in excruciatingly slow detail where fear took me. Fear caused by those “alarming statistics” used ad nauseam by organizations like Autism Speaks, drives many like me to go to incredible lengths to “help” our child. Blinded by abject fear we pursue things that can cause our children real harm, both physical and emotional. The toll our fear can take on our children cannot be overstated.
I abhor Autism Speaks. As the single largest organization claiming to know what autism is and is not, and worse, suggesting they “speak” for autism and those who are Autistic, Autism Speaks does more damage to my Autistic child than any other. They have done a brilliant job marketing fear. For transparency’s sake they should rename their organization ~ Fear Autism. Donations pour in, large companies lulled into believing they are “helping” give their support. Autism Speaks uses so much of their vast resources to hurt my child and Autistic people with that fear; what little good they accomplish in other areas in no way can counter the long-lasting and devastating damage they have done and continue to do to families who live in the kind of fear we once did.
I’ve written a great deal about fear on this blog, such as this post where I wrote about what I once believed:
“What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.”
And this post where I wrote:
“When my daughter was diagnosed with autism, my fear of institutions was the one fear, outstripped by any other, that brought me to my knees. For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died. It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments. For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal. It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world. Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.”
Richard and I live a very different life than we did just three years ago and it is all because we stopped being afraid. If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog. These last six months, specifically, show how Emma has increasingly taken over this blog, just as I once did not dare dream possible. It is her voice that sings out, every day a bit louder, every day more powerfully, every day…
A few more posts on Fear:
The Impact of Fearing Autism
Where Fear Leads Us
How My Fears Drove Me to Pursue a Cure
Murder, Fear and Hope
Love Not Fear. Tomorrow is the Love not Fear Flashblog.
For submissions email: info@boycottautismspeaks.com
Love. Just a whole lot of LOVE! Emma’s Halloween Costume ~ The Love Monster
Emma's Hope Book 
Great post — you’ve nailed exactly what is wrong with Autism Speaks and how much can be accomplished by understanding and love.
Love to you all! xxx
LOVE !! Wow, I love this blog and Emma and you both (the parents ;)) more and more everyday. I say we declare April as “No Fear of Autism Month” 🙂 I am working with our diagnosis clinic here in compiling a list of resources for the parents who are new to the spectrum and this blog goes right on top. You have helped me in my journey with my kids so much and I want others to see this too. Love is the Answer
Wow – this is a great post! I especially like “If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog.”
Not being motivated by fear doesn’t mean you’re not motivated. It just means you’re allowing yourself to be motivated by LOVE to the greatest extent. Fear crushes love. But if you let it (as you have), love crushes fear.
Reblogged this on Spectrum Perspectives and commented:
When we let fear rule us, we can’t think, we can’t breathe, we can’t see the possibilities in front of us. When we love, we accomplish so much. Love conquers fear and creates opportunities for growth. Fear destroys – Love creates. I choose LOVE.
There wasn’t one single moment when I dropped the boulder of fear I’d been carrying around on my shoulders since Emma was diagnosed. But I do know what happened. We stopped trying to “cure” Emma of the “disease” of autism. We realized that Emma was autistic in the same way I’m white, male and not autistic. What constitutes a person’s identity? What makes you or I unique? What makes us “who we are”? Our minds. Our minds tell us who we are, what we like and love, dislike and fear. No mind=No me. So when someone’s neurology (a fancy word for mind/sensation) is fundamentally different in such a pronounced and profound way, so much so that it defines their world and their understanding of themselves and others–how can one possibly be “cured” and keep one’s essential identity intact?
It makes me think of attempts by conservative religious groups to “cure” homosexuals. How’d that work out for you? Did you wind up with a big bunch of happy heterosexuals, blessedly relieved to be rid of those horrible “unnatural” urges? No, you got a big bunch of self-loathing, miserable, maladjusted misfits who considered suicide before admitting that the “cure” wasn’t “working” and tried to recapture their essential identity, embrace self-acceptance, and heal the emotional trauma caused in pursuit of a “cure.”
I will always feel guilt and remorse for the massive amount of trauma we inflicted on Emma in pursuit of the “curing” her of autism–the Holy Grail of Autism Speaks. If only one parent reading this who has an autistic child is persuaded to reconsider the “expert” opinions and pursue a different path–embracing acceptance, empowering their children instead of resolutely attempting to fundamentally alter their wonderful uniqueness–then all our horrible mistakes will at least have served some helpful purpose.
There are some attributes of Emma’s neurology that she may wish to alter. She expressed one goal when she wrote: “I want to be able to talk.” Perhaps she may want to ease some of her obsessive/compulsive impulses that cause her distress. Whatever her goals, we will help her achieve them. But if she falls short of her aims (as most of have done in one way or another), she will know that she is completely loved for being exactly who she is. She will know that we are here to support and nurture her as long as we live. She will know that she has so many more people that will support and nurture if we are no longer by her side.
But we will never try to cure her of autism. Why would we? She has one of the most amazing minds it’s ever been my privilege to encounter. When I read the things she writes, I don’t think, “I wish I could cure you.” Instead I think: “I wish I could see with your eyes, hear with your ears, feel with your heart, think with your beautiful mind.”
I wish I could be more like you Emma.
I have been reading this blog almost from the very beginning, and have found myself virtually unable to comment in recent months because I am so deeply moved by the journey the four of you have been on, by Emma’s wisdom, by the lyricism and raw candor that permeate this lovely site. I have told others here at Juilliard of Emma’s words — “Music is stars for the ears ” — and their eyes light up at the words she has found to express what we cannot. Perhaps it is this last thought that stills my hand to comment, for her words and yours say so much more than mine possibly can. But I am here, reading.
As a mom at the beginning of this journey I know all about the fear. It consumes. So much sometimes I feel like I can’t breathe. I used to love the unknown. Now I fear it. Your blog gives me hope. Emma gives me hope. Thank you
Hi – I want to thank you for offering a “what if” vision of what life could have been like, had my parents just let go of their guilt, shame and anger over my disability and been capable of loving me for who I was. In my case it was blindness but the principle — that there’s no distinction between the disability and the self — applies equally. I think Emma will understand the change you’ve gone through and thank you for it, as I do.
So true! Operating out of fear will always lead you down the wrong path. I have found myself trying to calm my anxious child, only to realize that he is feeding off my own anxiety and fear. If I put my “Love, not Fear” oxygen mask on first, I can help him do the same. How can we expect our kids to value their lives, when we have not fully accepted them first?
I had the fear but it is fading so quickly thanks to you Emma. Thanks to you and your parents for helping so many to understand.
I am grateful that I’ve had the time and space to move beyond ideas of what is right, what is possible, and what needs to be fixed. My children, by their very presence in my life, have transformed me. All of us, being our selves, with our expanded awareness, transform the world. And the world, will be a better place for all of us.