It started with this:
Josie @josieiscreating ~ @diaryofamom you will love this.🙂 shiftjournal.com/2011/11/30/the…
which led me to this:
which I didn’t just love but adored and I knew I just had to read more, so I clicked over to this:
where I read this:
And thought, “Oh my God, we ALL need to read this.”
And then I read more. And I came to this:
And when I got to this I nodded because it just made so much sense and because I get this.
God, do I get this.
I am not flattered when you say that I don’t really see you as autistic or it’s just a label.
Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.
It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.
For the record, I don’t really see you as much of an asshole, usually.
And then I read this:
After which I felt compelled to write this:
for my autistic daughter, who is nearly nine, i thank you. i have done and will continue to do everything in my power to let her know that she is not alone, but i don’t live what she does. it is people like you who will be there – who i thank god *are* there – to light the way for her. i can tell her until i’m blue in the face that she is perfect – that she IS. NOT. BROKEN, that she needs help, not fundamental change. but it is you who can *show* her all that simply by being here. thank you. from the bottom of my heart, thank you.
And then I read this and I couldn’t breathe:
I couldn’t breathe because now this topic that I’d spent so much time thinking and talking about was real. Now it was URGENT. Disclosure was no longer some hazy concept to be debated among parents – When? How? To whom? (and not for nothing, but isn’t there an arrogance in the implied ownership of that conversation?) But no matter, because it was no longer an idea – something that *would* matter down the road for my child, for yours, for all of our children – it was something that mattered NOW. And it didn’t matter in some far-off feel-good universe of the future, it mattered in the moment, in the here and the now – for survival.
When Julia said to the young man who had been beaten in his own school,
I can’t fix what happened to you, or to me, or to any of the people I know. It’s painful and humiliating and makes a person feel wrong and bad and powerless. Please trust me when I say that you are none of those things. You are not bad or broken. You are autistic, and you are also fine.
You deserve to be treated like a human being. You deserve kindness and respect and dignity. Someday, you will have those things.
I am fighting for that. My friends at the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) are fighting for that. Even the President is on our side—he made a speech in March for a conference I attended that stressed that bullying and abuse are civil rights violations. We’re gonna win this. But right now, you just need to remember that you are fine. There is nothing wrong with you. All the bullies and abusers in the world can’t change that.
You can write back to me if you want to, or email me at email@example.com. You absolutely don’t have to. But there is a whole community of us out there who want to help, and who are sickened and outraged every time this happens, and who will always support you and have your back.
You are not alone.
I couldn’t breathe.
I couldn’t breathe because the ability for that young man to find Julia – to find his peers, his community, to find out that he IS NOT ALONE comes from us. The label is the map to the community. Once they know it exists, it will be up to the next generation to join it or eschew it. But without the words – without the label, there is no map. There is no choice.
I remembered a post I’d written for Hopeful Parents – one of so many on the topic of disclosure.
I’d written it after attending an educational advocacy meeting the night before in which I’d been asked – yet again – why Luau and I choose to be ‘so open’ about Brooke’s autism.
And I knew I had to bring that post home to Diary. For Tina Washington’s son. For Julia. For Brooke. For everyone out there who thinks or ever thought they walk(ed) this path alone. For everyone who has asked me why we are ‘so open’ about Brooke’s autism.
This is why.
Thank you, Julia. For everything.
Theirs to Define
Originally published on Hopeful Parents, June, 2010
It’s almost inevitable. If enough autism parents are together in a room, one of them will ask.
How did you decide to talk openly about Brooke’s autism?
I’ll tell them that I’m happy to run through our logic, but that first I must make the disclaimer that it’s a personal decision and that everyone has to handle it in the way that they think is best for their child. I’m big on disclaimers, you see. Nothing about autism is a One Size Fits All proposition. So I’ll say that none of us can crawl inside each other’s families. That we have to trust one other’s ability to choose the right paths for ourselves and our children.
And then I’ll answer the question.
I will tell them that we believe that the only way to extract the stigma from the label is to demystify it. To make it real. To give it a face, a name, a three-dimensional being.
I will tell them that we believe that awareness leads to compassion and compassion to acceptance.
I will tell them that we believe that ignorance perpetuates discrimination and fear.
Someone will whisper the next question like the mom at the dinner table in Saint Elmo’s Fire.
But have you told your daughter? Does SHE know?
I’ll answer that I have. That we use the words and the concepts as openly at home as we do anywhere else. I’ll tell them that I have no idea how much of it she understands yet. I’ll explain that her language just isn’t there yet.
Someone will ask why. But why does SHE need to know?
I’ll invoke the words of Dr. Stephen Shore. “I was lucky in that my parents used the word autism around the house for as long as I could remember. We didn’t know what it really was back then but it sure helped explain a lot of the differences.”
I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable.
I will tell them that we feel that secrets imply shame or fear. Or both. I will tell them that I want neither in my home.
I will tell them that we believe that our daughter deserves all of the insight we can give her into her strengths, her challenges and everything in between.
They will ask BUT HOW? How do you tell them?
I’ll go back to Stephen Shore and tell them about his four-pronged method of disclosure.
1. Talk about the child’s particular characteristics. Cite strengths first and then talk about challenges.
2. Line up strengths with challenges – identify those that can be used to offset each other.
3. Non-judgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history or popular culture. Newton, Einstein .. you know the drill.
4. Explain that the particular set of characteristics fit under a label.
Someone will say, Fine, so you talk to them about common characteristics and help them understand their challenges, but why do you need to put a LABEL on it?
She’ll spit out the word LABEL as if expelling a sip of turned milk from her mouth. LABEL.
I’ll ask why a name has to be a bad thing. I’ll ask if we can’t reclaim it for our children. Reframe it completely. Give it to them – make it theirs to define. I’ll find a passion stirred, the sleeping giant opening one eye and peering around the room. I’ll try to contain him.
I’ll ask a question of my own.
What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?
I’ll try to rein it in, but I’ll fail.
I’ll turn to the woman who asked the question. I’ll leave her with one last question in return.
Can you IMAGINE the possibilities?
I am honored to have contributed to the Thinking Person’s Guide to Autism – the book, about which Steve Siberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science writes, “Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” Get your copy HERE. Learn more about TPGA HERE.
Ed Note: When I originally published this post, I inadvertently omitted a chunk of text that I’d cut to move and forgotten to paste. Thanks to my helpful husband, the missing text and (its corresponding link) have now been restored.