middle ground

*

When my daughter was first diagnosed with autism at the age of three, I was terrified. I will never forget the day that I saw the word in print for the first time. In a blur, I ran from my desk and made my way through the corridor to the ladies room at work. There was no air in the rest room. The walls closed in as if in a nightmarish fun house. I couldn’t breathe. I gagged. I heaved over the toilet and clutched the cool porcelain like a life line. I nearly threw myself into the wall just to FEEL SOMETHING ELSE.  I didn’t know what to do with the fear and the rage. I swallowed them. I lost words. I couldn’t function. When I finally found words, they were, ‘How did I not do anything earlier?’ over and over and over again.

Autism was HUGE then – a terrifying beast of mythic proportions that I neither knew nor understood.

Three years later, I am stronger. I have (mostly) moved away from the unproductive anger and paralyzing fear that I felt that day. I have faced not only autism but my own insecurities about fitting in and standing out. I have found my own voice as my daughter has found hers. I have learned to hone in on sensitivity, compassion and tolerance and to foster them in our family and in our lives. I have found myself in the process of forging a path to my daughter. I have come light years from the bathroom floor where I started this journey.

Over the past three years, my view of autism has evolved, and continues to change with each passing day. In that time I have come to see that there are as many approaches to autism as there are people on the spectrum. That there as many right answers as there are questions. That there is no one size fits all solution to any of it.

Early on, I was horrified and angered by what I read of the neuro-diversity movement. I simply could not embrace the idea that something that in so many cases was so debilitating should be celebrated. I could not look at my friends who had never heard their children’s voices – who were trying so hard to contain the smearing of feces on walls, whose children were biting and hitting themselves, hurling themselves on the ground, running headlong into traffic, struggling through every aspect of their day – and tell them that those ‘differences’ should be celebrated. I saw only the extremes, and the need for immediate action.

Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it, but I don’t think so.

I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that –  but challenges and all, autism is part of who she is.

But I don’t claim to speak for anyone else. I stand in a unique place with a unique child, just like the millions of other unique parents with one of a kind children. I certainly don’t claim that no one should seek an all out cure RIGHT THIS SECOND. Of course they should. And I will stand beside them as they do. I can’t make that decision for anyone else. Hell, I’m admitting that I don’t even feel like I can make it for my own kid.

But that’s me three years in.

After watching the ‘I am Autism’ video yesterday, I was thrown for a loop. Suddenly, all of these questions were swirling and whirling through my head and I had to face them head on.

I have talked about what I see as the need to de-mystify autism and those who live with it every day. To show the world what it really means to live with a brain that works differently from the norm. To engage people in the conversation, to bring them to a place of understanding and compassion. To gather and energize an army of folks to help in the search for answers. I don’t think that has to mean watering it down for public consumption. Autism isn’t cute and cuddly, even if my kid may be. But I don’t think it necessitates building it up either.

I watched the parents at the end of the video and I know they are supposed to make me feel hopeful. They make the point that they are strong enough to fight this fantastic beast that has taken our children. But honestly, I felt sad and tired and overcome by emotion. It brought me right back to that moment, three years ago when autism was that big – that sensational – that terrifying.

Three years ago, the video might have killed me. But even today, the remnants of that terrified mom in the bathroom are still there, watching it with me. To her I say,

You will be ok. This WILL NOT destroy you. It does not have power that you don’t give to it. Your dreams may change, but they will be no less meaningful or worthy of dreaming. Nothing can take away your hope. Nothing will. Autism will not destroy your marriage any more than it will destroy you. It may show you some things about yourself and your loved ones in stark relief, but everything you see through that lens was already there. You will find your way. YOU WILL GET THROUGH THIS.

I would beg her to read what she will write to a friend – to herself – three years later.

And then I would invite her to take a seat next to me, right here on my colorful patchwork of middle ground.

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28 thoughts on “middle ground

  1. i love this. yes. the middle ground. it’s the only place where true connection can be made and what do we want for our kids if not connection? far more than to get rid of fluffy’s aspergers, i always wanted for him to feel connected to himself, to what he loves and values and to the people that are and will be part of creating that in his life.

  2. there are all sorts of ways the video could have listed symptoms, hinted at the major stress, serious difficulties involved without demonizing autism. it goes too far to the point of misinformation. and the fact that it has to use cheap theatrics…the menacing voice, the ominous music…really too much.so i really like what you say here: the gray area. “I have talked about what I see as the need to de-mystify autism”. In other words, to show people that gray area. If the video had made some effort to do what you’re suggsting: demystify, not demonize, it would have made so much more sense.

    it was troubling that in the second half of the video, the parents are given voices of hope. but autism? it’s given the voice of a menacing threat. so i know the intentions were good, the imbalance of that tone is frustrating. “caring parents. evil autism…autism that wants to break you, destroy you, ruin your marriage, etc.); not a lot of gray area there. it just doesn’t fit the reality that you describe so well here.

    so, thanks for this post, the middle ground description, it’s perfect: a good anecdote for the video.

  3. Beautifully said, beautifully written. I agree with everything here. And do you know? I often wonder what I would have been feeling during that initial diagnosis period if I had a different picture of autism to reflect on than the one served up by most media. I think that is why these blogs are so important. All of our voices. Together. It is SO important!

  4. Standing ovation here, little sister.

    As you know, I, too, was in the bathroom right with you eight years ago. I was actually in the broom closet at work, crying and vomiting during the passing times of classes.

    The thought nearly killed me.

    Nearly.

    Had I seen that video at that time, it damn near would have.

    Fast forward several years later, and what saved me, my daughter, and my family is the very thing you are talking about;
    talking with others, being involved in this community, making friends with other families from all over, and simply, seeing the beauty that resides within the “beast” of autism.

    My motto in life and parenting is simply, that I work with what I have.

    Keep moving forward.

    And simply, you never know.

    As I picked up my daughter with autism, who went to school and sang in a chorus, and ran in to get the dinner order from a restaurant last night, I say this:

    You never, ever know.

    And that is why we cannot give up. And not lend our precious energy to sensational and paranoia-mongering media.

    We’ve simply too much work to do.

    And quite frankly, people with autism are PEOPLE…and deserve our respect and understanding.

  5. Lovely, lovely, lovely post.

    2 years ago I laid on my kitchen floor sobbing my heart out as my son danced around me laughing hysterically. At the time I thought I wouldn’t live through it. I’ll never forget that woman. I was so terrified. The anguish was so thick. I feel like you’ve pulled the words from my head, but I could never string them together as eloquently as you have. You have a gift.

    I am meeting a Mom today who is new to this beastly fight. I emailed a link to your “letter to a friend” and told her it will ring true with time.

    Thank you for being such a great voice. You blog helps so many. Keep up the great work!

    (the above comment by your father left me with a lump in my throat and tears in my eyes)

  6. Very well said, Jess. I like to live in the middle ground as well.

    What frustrates me so much about that video more than anything is the “absolute” tone it takes. Autism IS this, Autism WILL DO that. I hate that.

  7. “That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for.”

    “I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is.”

    I don’t like labels or parsing of labels and fanaticism, so I’ve never allied myself with a “movement,” either. And what you say about yourself doesn’t make you part of the neurodiversity movement or the “other” side. It makes you a Parent, and a realistic one at that. It’s the best label we can have on behalf of our children. What you describe in the first quote is acceptance, which is so important for our children, no matter who they are. And in the second quote, what you describe is understanding and the true calling for any parent, regardless of whether their children are autistic or not: give your child tools to smooth their path in this world for themselves, as much as you can.

    Nicely said all around. Thanks.

  8. There are reasons that I don’t understand why people of your exceptional quality are given such challenges. Those very challenges however, are what give you that exceptional strength to apply your incredible skills and humanity to help Brooke, yourself, and the rest of us to understand and give voice to us to deal with this burden. I know your pain and anguish because I love you as life itself and I identify with you. As my “little girl”, you are and have always been my hero. In this fight as you protect, love, and teach your baby and the rest of us, you reach the heights. Love you-Dad

  9. It is so wonderful to read your post, Jess and equally wonderful to read the comments of the phenomenal community of people who reach back to you. We’re all working for the same cause. We all want so much for our children and in this case our grandchildren, as well. We’ve all grown with Brooke over these past 3 years. I hope we can all continue to keep up with her (and you).

    Love,
    Mom

  10. thanks so much for your honesty. you have such a gift, such a beautiful way of putting words to things i could never have articulated. honestly, i’m still trying to figure out how i feel about the video. but 3 years later i can say i’m grateful for the thing i thought would destroy me – for the many, many lessons learned (and still to be learned), the friendships gained… it’s an honor to sit next to you.

  11. “You will be ok. This WILL NOT destroy you. It does not have power that you don’t give to it. Your dreams may change, but they will be no less meaningful or worthy of dreaming. Nothing can take away your hope. Nothing will. Autism will not destroy your marriage any more than it will destroy you. It may show you some things about yourself and your loved ones in stark relief, but everything you see through that lens was already there. You will find your way. YOU WILL GET THROUGH THIS.”

    Oh my God thank you so much….We got our diagnosis three weeks ago…I am so angry, sad and overwhelmed that some days I dont know what to do. Its all on me….I usually just work work work to get my son what he needs which leaves very little time for feeling, but as I was on the internet yesterday looking at “fidgets” for him at pre-school…it hit me so hard…”I have a special needs child”…my heart drops to my stomach when it hits me like this and i feel paralyzed…so thank you for this entry…I needed to read this

  12. *settling in and reaching out to hold a hand*
    I never had the initial shock/trauma experience that many parents have upon getting that first diagnosis. Maybe it’s b/c I had already lived through the 209 day NICU stay, the surgeries, the seizures…I was already so numb. Frankly, we suspected the dignosis long before anyone would actually give voice to the words. For us, it was actually a relief. Not rainbows and unicorns, for sure, but a relief to have a name for what we were living with.

    Little did I realize, until very recently, that I would experience a form of PTSD or that it could, in fact, be triggered by watching that awful video. I’ve been a wreck since I saw it.

    Thank you, Jess, for your thoughtful, honest and heartfelt expression of your thoughts. More importantly, thank you for your generous and open heart which makes room for everyone to find a place on this rainbow tapestry.

  13. I honestly didn’t watch the video. I read Kyra’s post and got the jist and that was enough for me! I do feel there is a place for the rage, and also a place for acceptance.

    However, after mulling it over for a day, what is described in that video would make my very aware child, who already often feels like a burden for her differences and sensitivity f,eel worse about herself.

    May she never see it.

    Thank you Autism Speaks. May you continue your search for the real killers. ; )

  14. Shivon – I’m so glad you came here today.

    No accidents.

    If you can, click on the link above where it says ‘what she will write’ in blue – it will link you to a post called ‘welcome to the club’.

    And know above all, that you are not alone.

  15. I often describe myself as a “neurodiversity advocate”. What I mean by that, though, may not be what others mean. I mean that my son has said he would not want a cure. Autism is who he is. He says that. However, if there ever is a cure, I would never judge anyone else for using it, or for celebrating it, for them. I think there’s room for all of us. We all need to do what we feel is best for ourselves, our familes, or our children. We all need to support each other as we move through the world.
    You write beautifully. And you always make me think. Thanks for that.

  16. I am so with you on this!

    When my son was first diagnosed, I felt like autism had stolen my son and my dreams for his future. Now, I realize that autism is a part of Noah. How can I separate what parts I truly love in my son are from autism and what parts are just Noah? How much different would Noah’s beautiful personality be if his autism was not part of the picture? Autism is a big part of what makes Noah…Noah.

  17. Jack is 6 too, diagnosed four years ago in November. He is a light…a joy. Although he is severely affected, I do not believe autism defines him. I have never evolved past that point. I don’t think I will.

    For him … for our family…for those who share this feeling…this experience, I pray for a cure … every day.

    For those who don’t, I have no issue. As long as we are all advocating for something and not against each other, that is all that matters to me.

  18. I finally watched it. I spent the past two days deciding if I should. It was hard to watch, and I feel drained now. All I can say is that I hope that Nigel never sees it. He has a hard enough time accepting his autism. How is a teen who has autism, who painstakingly learns how to talk, who learns what age he was when diagnosed and does the math to figure out when his parents divorced, how is he supposed to feel after hearing ” . . . I will make sure that your marriage fails”?

    Still, I think that the middle ground is the best place to be. Everyone has a right to feel the way they do, including the makers of that video. Thank you for reminding me to be diplomatic.

  19. 6 years ago I fell into a black abyss that I surely thought I’d never climb out of. But from up above, hands reached out and gently pulled me back up and out into the light, the beautiful light of colors – no longer the absence of color or solid white. Im basking in that rainbow with ya Jess because I never want to go back to the darkness.

    Another book recommendation -Speed of Dark by Elizabeth Moon. Fictional story of a man with autism who works for a pharmaceutical company that has developed a cure. He is faced with a choice. Great read as Elizabeth Moon has a son who is ASD. Dont do too much googling as there are spoilers out there even on Amazon.

  20. I’m so glad you wrote this post. I watched the video when I first got the notice from Autism Speaks with high expectations and excitement. It left me with mixed emotions that I still don’t quite understand. I thought I was alone feeling this way – glad to hear I am not. Jess, once again, thanks for making me feel like I’m not in this alone.

  21. it makes you a card carrying neurodiversity mom because neurodiversity does NOT mean no treatment. It means acceptance. It means treating those with autism like people, because they are people. It means acknowledging there is both positive and negative. It means fighting for rights and resources. Yes, there are a small vocal handful that are members of the movement for neurodiversity that are anti-treatment or anti-ABA. Usually they had bad experiences with certain forms of treatment, and being autistic, they react to it in a fairly obsessive way. People don’t seem to understand that many members of the neurodiverse movement are they, themselves neurodiverse and it is quite possible they process/communicate differently, and it’s quite possible the general public won’t understand them.

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