rallying cry

~

~

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 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.

~ Middle Ground, Diary 2009

*

I’ve heard it said that you can’t hate autism and love a person with autism at the same time. I don’t think that’s true. I think you can abhor the thing that makes your child’s life hard. I think you can despise the challenges that he is forced to face. I think you can desperately wish that she didn’t have to struggle with the things that come so naturally to others. I think you can love your child with the ferocity and tenderness that can only coexist in the heart of a parent, while simultaneously hating the thing that denies him an effective method of communicating his most basic wants and needs.

But, I worry – really worry – about the consequences of that anger – particularly when it’s expressed in front of our kids.

We gather together and rally the troops for battle.

We shout from bully pulpits …

We must win this fight against autism! 

We will do everything in our power to combat autism!

We must find a cure for this thing we call autism!

We will continue to use every resource at our disposal to battle autism!

Or even the somewhat more benign ..

We are doing everything in our power to ensure a brighter future for people who struggle with autism.

Every one of those was a real sentence from a real gathering I attended earlier in the week. Lest assumptions begin to fly, I think it’s important to note that the only one that was uttered by a staff member of the event’s sponsor was the last one. All the others were from invited speakers.

I watched the autistic children and adults who sat with their families and who listened and took it all in. I cringed and hoped that perhaps the little boy directly in front of me didn’t hear it, didn’t process it, but then I think of my Brooke. At age nine, she rattles of ‘Remember whens’ like water – “Remember when I was three and you were sorry and I cried and then you gave me the white water?” Yes, my sweet, and I remember thinking that you had no awareness of what was going on around you then. Foolish, foolish me.

So what of it? What happens as our children sit in the crowd and hear the rallying cries? How on earth do  we convince them to feel safe and respected and cherished and valued when we tell them that such a big part of who they are is public enemy number one. What must that do to their self-image? How can that feel?

What if we sat in those crowds while the speaker at the podium cried,

We must win this fight against brown hair!

We will do everything in our power to combat blue eyes! 

We must find a cure for this thing we call femaleness! 

We will continue to use every resource at our disposal to battle heterosexuality!

We are doing everything in our power to ensure a brighter future for people who struggle with white skin! 

How would that feel?

Would it be enough to say, “Oh, don’t worry. I don’t hate you; just your gender.” Or “I don’t want to defeat you; just your sexuality.”?

I know that these are desperately imperfect parallels. I get it. I know that the color of our eyes or our hair does not intrinsically challenge us. I know that neither sexuality nor gender intrinsically cause pain. I know and fully acknowledge that autism is not benign. And I know and fully acknowledge that to imply that it is does a dramatic disservice to those who so desperately need our help and support.

But I also know that for our kids, and even more for the autistic adults who I’ve come to know, autism is just as much a part of who they are and how they experience the world as is their gender, their sexuality or the color of their skin. Even more so because it is the filter through which they experience EVERYTHING.

So how does it feel?

When your mom, your dad, your siblings, the guy with the microphone says, “We will do everything in our power to cure the filter through which you see the world”?

I don’t know the answer, but I can imagine.

I’m not saying that seeking a cure for autism and thereby presenting it as an option is wrong. I don’t know that it is. I’m not sure that it’s not. Frankly, I don’t feel like I’m in any position to make that call.

The truth is, I have no idea what the hell we would do if we were offered a pill tomorrow for our girl. I do know that I want to take away her pain. I do know that I want her life to be better. I do know that I want to banish her crippling anxiety. I do know that I want her path to be far, far easier for her than it is today. And I don’t doubt that if she were more severely affected than she is, I’d want those things even more.

But I don’t know what a cure is. I don’t know what it would mean for her. Honestly, I just can’t wrap my brain around it. I understand (and pine for) the mitigation of her challenges. But I really don’t know what ‘curing her’ would look like. Or what it would leave behind.

Would her incredible memory be cured along with her anxiety? Would her delightfully unique perspective be cured along with her difficulty attending to a task? Would her ability to find beauty in the most mundane things be cured along with her challenges with language? Would she still be able to see music? Imitate accents? What about all of the other gifts that we have yet to discover? Do they get ‘cured’ along with her Sensory Processing Disorder?

This is about Brooke. It’s about empowering her; supporting her; letting her, to whatever degree she is able, lead us. She is nine. She is coming more and more into her own every day. I want her to become involved in all of this. I want her to begin to understand the concept of advocacy so that ultimately she can take the reins if she so chooses. I want her to someday understand the options so that she can tell us what to fight for.

The first step should be simple: bringing her with us. Introducing her to the community of those like her and those who support her. Helping to lead her to her village and encouraging her to find her voice.

But I can’t do that in a venue where people are shouting a rallying cry against such a big part of her identity. How can a nine year-old be expected to understand that it’s not her they’re battling, ‘just’ her autism? Hell, how can a forty year-old? I just can’t do it.

And that scares the hell out of me. Because if I can’t bring her to the place that I’m theoretically going to support her, I really have to wonder if I’m going to the right place.

~

Ed note: Before I wrap this up, I have to say this .. I believe, from the bottom of my heart, that the people I quoted above said what they said from a place of pure, unadulterated love and a burning desire to make the world easier for those on the spectrum to inhabit. Like me, like you, like all of us, they want desperately to make life better – make the future brighter – for our children and for all affected by autism. They want to help and I am grateful beyond measure that they have stepped into the ring to do so. 

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28 thoughts on “rallying cry

  1. Once again, all I can say is that I understand! I love Brooke and who she is but I do so wish she did not have the pain that comes with who she is.

    Well said (once again)!

    Love you,
    Mom

  2. I agree largely with what you said, but I found your statements about gender and sexuality very problematic. I don’t mean to be snarky at all, but as a GLBTQ advocate, I feel like I need to say something.

    Gender and sexuality DO intrinsically cause pain in a world where homosexuality and transgender are demonized. GLBTQ kids are bullied to the point of killing themselves or are beaten and killed by others on a disturbingly regular basis. GLBTQ adults are still denied basic rights in most states.

    These kids get the message that there is something deeply and intrinsically wrong with them, and it is so damaging. GLBTQ youth are at a much higher risk of depression, substance abuse, and becoming homeless.

    The statistics are very worrisome. http://www.youthprideri.org/Resources/Statistics/tabid/227/Default.aspx

    There ARE groups who says, “we will continue to use every resource we have to fight your homosexuality!” People DO say that they want to abolish homosexuality.

    A friend of mine was brutally beaten in broad daylight on a busy city street in NYC, because he is an openly gay man. It still happens. He had to have reconstructive facial surgery. A stranger hated him so much for daring to be himself and not hiding it that he literally broke his face. No one stepped in to help my friend either.

    I do hope this comes across the right way. I know that when someone has made a comparison to autism that didn’t sit right with you that you have spoken out against it.

    • I very much appreciate your comment. And of course it comes off the right way!

      The distinction that I was trying to make rides on the interpretation of the word ‘intrinsic’ which you and I are using very differently. When I say that gender and sexuality do not *intrinsically* cause pain, I mean *in and of themselves – in a vacuum – totally excluding environmental factors*.

      For my daughter, autism – in and of itself – in a vacuum – totally excluding environmental factors – still causes her pain. If she lived her life alone in a room never subjected to judgement, she’d still have anxiety, sensory discomfort etc.

      I don’t argue AT ALL – that gender and sexuality (particularly when one is transgendered or gender queer or whose sexuality doesn’t fit society’s mold) can cause horrible pain in the face of judgement. Judgement that I am grateful you are battling to eradicate.

      I hope that clarifies where I was coming from. Again, I very much appreciate your comment and the reminder that we are not the only ones fighting discrimination.

      • Thank you for understanding. I do see what you mean. I find your blog and comments overall to be very thoughtful and well written.

        I am cisgendered so I can’t speak for the trans community, but from what I understand the gender dysphoria that many trans people experience (even in a supportive environment) can be very painful and disorienting especially during puberty. It is an internal process that would also still exist regardless of environmental factors.

        It is all so complex, but fighting against discrimination will hopefully help all our kids in the long run.

  3. So true. This is a reminder even to me personally, at home, to be mindful of my words. I too wonder if we took away autism, if I would not longer have the same boy with so many gifts and quirks that I love desperately. I’m not even sure what the right language or approach is. I think that’s what makes ASD so uniquely difficult, what makes it such a puzzle in so very many ways.

  4. Thank you, thank you, thank you! I had this very conversation with my wonderful father-in-law a year or so ago. He couldn’t understand why I would say that. I have forwarded this to him because you have said what I’ve been saying and feeling in such a clear and beautiful way!!!

  5. I work with children with autism. I come from a place of growing realisation over the last forty years that I have ‘Gill’ Syndrome – I’m Me. Labels can be helpful if they lead to increased understanding; they can point to the best ways to deal with behaviour, more quickly perhaps than intuition alone (at first anyway). However I agree that ‘autism’ isn’t so much the problem as our response to it. I have come across horrendously-behaved young people who were quick to point out that they couldn’t help it (for various reasons, sometimes autism).
    Of course, there are people for whom autism results in a non-communicative, blindly-raging approach to life, and these people need different things from us than the children with insights into their condition.
    Personally I try in my dealings with the children in my school to look beyond their labels and find out what makes them tick – regardless of how or why it might make them tick that way. I don’t speak loudly when X is around because she hates it. I don’t use metaphors with Y because they are meaningless to him.
    I don’t see this s a Struggle Against Autism, I see it as a struggle to respond to every person in earth in a way which is appropriate for them. (Incidentally, that includes people dealing with gender/sexuality issues as well as religious bigots, the last being the hardest to whom I need to extend compassion and understanding, but I do my best!)

  6. As I type through tears, I just want to say “amen”. This topic is something my husband and I JUST discussed. I feel like you are in my head.

    Another terrific spot-on post….

  7. I think this entire post is PERFECT. I cringe thinking back at things I said in front of my child with my lack of understanding of what he was understanding. I’m sure there will be people who disagree with you wholeheartedly, some just want to “fight something”. They think it makes them a great advocate or a tiger parent or whatever. But for me. This is perfect. Thank you for putting into words what I have felt for a long while.

  8. Yes, well said, and thank you. I’ve been thinking about my beginning of the school year letter to Andrew’s teachers and support staff and was contemplating beginning with “Andrew has autism. So what. He’s also left-handed, has a sunny disposition, etc. ” As far as including him in the community, just yesterday I went to an IEP workshop my place of business sponsored and the parent advocate rep suggested bringing your child to the PPT meetings earlier than required, like the one before 4th grade. Something I will definitely give thought to, to help him own his autism. We’re a couple of years away though. Again, a great post, thank you.

  9. Do you mind if I ask if this was the National Conference at PSU? I missed it, but had heard rumors of some of this. I think it is imperative that we make sure our kids are surrounded by professionals who don’t follow this type of mantra….who see the beauty and the beast. I know deciding that for our family has made a world of difference for how I feel.

  10. It’s a good post, Jess.

    I stopped listening to political radio a long time ago because I realized that I wasn’t learning anything about policy. . . I was getting a one-sided view of the issues. There was no debate, discussion, resolution, just a statement of how things would be better, and how the other side is wrong. . . but not WHY.

    In this community many of the blogs I read are similar. I’m sort of stuck in the middle wanting to read someone from either “side” acknowledging or addressing the real issues that the “other side” brings to the table.

    There has to be a “right” answer, right? And it’s gotta be somewhere between our current two-party system of I HATE AUTISM and I LOVE AUTISM. I’ve never heard a satisfactory answer from the I LOVE AUTISM camp that addresses the challenges of a profoundly autistic adult with SIB’s and aggressive behavior that fits the “beautiful mind” rhetoric. And I want to get it. Similarly, I’ve never been able to find an “I HATE AUTISMer” who could acknowledge ANY benefit or beauty in his child’s autism.

    I find that I can’t read anything by the folks on the far right or far left of either side of that discussion because both sides are such assholes to each other.

  11. Yes, I get all that. I struggle every time we are in public with our youngest on the spectrum (now 7, diagnosed with Asperger’s and ADHD). At some point during any outing, we WILL have moments that scream of her issues, but only to those of us “in the know.” To the strangers involved, she just looks like a rude, undisciplined, spoiled brat. We are dealing with the highest-end of the spectrum, where she is fully-loaded with verbal communication…lots of words and lots of them far beyond what is typical for her age. It is almost to the other extreme. She has this endless fountain of words (sometimes rude and inappropriate, sometimes clever and entertaining), that never stop, and can never be interrupted. (My husband describes trying to talk to her like trying to take of sip of water from a firehose.) But, she has the social-emotional development of a toddler. She cannot tolerate being misquoted, even if it is just the wrong preposition. She cannot stop in the middle of a thought-stream. She cannot be stopped before she expresses every single thought she has on the subject at hand or on any related subject. Before I knew WHY she acted this way, I would be embarrassed and apologetic. But, since her diagnosis, I had started trying to explain her issues to the strangers…unfortunately, within her earshot. She hates that. She becomes enraged and immediately tries to find a place to hide. That is when I knew, on some level, even SHE knows that what happens when she loses control…is not what happens to everyone. She hates being watched when she loses it, even at home, but hates even more to have it pointed out in public. And, I noticed recently that my reactions are evolving. I am no longer embarassed; rather, I have started feeling angry and frustrated when the strangers don’t pick up on MY “non-verbal” cues to stop engaging with her. I have decided it is time to make a card to hand to people, particularly in social interactions that have the potential to spin out of control. Frankly, it would be easier to never leave the house. But, I refuse to do that to myself and the other children in our family, including another on the spectrum. And, you are absolutely right…there are parts of my daughters that would be a tragedy to lose if they were “cured.” I love them exactly as they are…but, it is the deepest agony knowing that they have moments of intense suffering doing or experiencing things that the NT’s of the world just pass through without even noticing. And, frankly, if my oldest daughter had heard the words you heard at the “gathering,” it would have just hammered home for her that there is something “wrong” with her and that she is a “burden.” Sighhhh…none of it is easy, that is for sure.

  12. It feels like hate, Jess, plain and simple. Not love masked in hate, not good intentions masked in hate, and not anything else. It feels like hate.

  13. I too changed my rally cry on autism over the years since my son’s diagnosis. It is like I went through a Mama metamorphosis-not finding peace with autism, but solace.
    When my boy was first diagnosed, I would attend workshops and seminars with the sole purpose of getting him off the spectrum. That was over four years ago. Recently, I met another parent whose daugther had been diagnosed six months earlier and she made the statement, “If my daughter was tested today, I am SURE that she would not be on the spectrum. Alleluia!” I smiled and flashed back to the Mama that I used to be. Wishing and rallying for the same result. Today, I have changed. Not because my son has not seen success and growth with therapies and HARD work; but, because as you said, Jess; autism is as a part of him as his brown hair, brown eyes, contagious smile, sense of humour and unbridled love for others.
    Today, I choose to embrace autism. My goal is to educate and teach others to embrace it too.

  14. Mama metamorphisis…exactly. Thanks for putting this out there, Jess. I’ve been at this place, grappling with this acceptance for a few years and am finally at a place where I’m ok and committed to making the world ok for my kids. And getting my son to his village.

  15. Thank you for your gift of expression Jess. This is an impressively clear piece on an equally impressively muddy topic. I thought it would be a good one alongside “Welcome to the Club”. Parents could gauge there reaction (mine would have been incredulous disbelief that someone could write such poppycock) and them be asked to return 1 year later and see where they sit. I’m 19 months into my awareness journey with my two lovelies on the spectrum, and only very recently would I read this and think “What she said”.

    And much of that awareness and growth in thinking is due to your words. A gift. You open my eyes. You change my thinking. Thank you.

  16. I have a concern with the idea that if the child’s autism were “cured” the child’s personality and skills would be altered to the degree the child would not be that same ;person. If a child’s lens though which he or she sees the world is autism, and we know autism affects the child’s perception of the events around him/her and as one comment mentioned, also his or her self perception, then why is it problematical to try to clear that lens? If your child had a cloudy cornea, it too would affect your child’s perception of the world and may too create behavioral issues. Would you not seek a fresh clear cornea for that child? Would you think the child’s life would be better? Would you fear that the child would loose the traits that you admire and love in your child? Lastly, people without autism have incredible memories, the ability to “see music”,and can see beauty that others over look. Is it right to associate those qualities of your child to autism?

    • Rudi, Those are all valid questions. The same ones I’m asking in fact. And the only answers I can truthfully offer are that I haven’t got the foggiest idea.

      There are no clean lines or definitive answers in any of it for me. What scares me most is not what the answers may be – it’s not asking the questions.

      As always, I don’t doubt that we all will have different perspectives on the issues at hand. By no means do I purport to have the ‘right’ one – nor do I think there necessarily is *a* right one. These are questions that we all have to answer for ourselves and that someday our children can hopefully answer for themselves.

  17. I too do not have the answers Jess, but I know for my two boys, and for all my kids, helping them to overcome their fear of UNCERTAINTY in the world is what remediation is about…if we as a society call it Autism ok… so IT has a name. BUt for me, Autism is JUST a name…and the bigger part that needs my attention, as a mom, is helping any one of my children overcome something that stops them dead in their tracks from interjecting their gifts into the world…and to me, the core of Autism, is the fear of uncertainty. It controls every thought ( control helps to minimize uncertainty)… So for me, blue eyes, etc…is not something that is gripping our kids that hinders them from moving forward…because when they are older, that uncertainty is recognized. Like any of us, we want to reflect on how we adjust to each part of our life, and not be stuck because of fears, etc…and we all have them. But with our kids, magnify that …but at the same time, just like I can say in my own life what I have learned to overcome, so can our kids…embracing the challenges in our lives that make US better individuals. If some of those challenges are named Autism, then just because you overcome those challenges, it does not change the name, or who you are…to me it actually makes you MORE defined! And with each time there is a season. Right now, my 15 year old, he is in football, noone knows he has *autism* but well, he still does..because even though the challenges have been remediated, it is still a part of his history. And once he is an adult, and fully understands all that he has overcome, he, I believe will embrace that.
    As his mom, yes, I worked to help him to overcome challenges, the same I would do for any of my kids, with any challenges.

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