all roads lead to disclosure

It started with this:

Josie @josieiscreating @diaryofamom you will love this. :) shiftjournal.com/2011/11/30/the…

which led me to this:

The Obsessive Joy of Autism

which I didn’t just love but adored and I knew I just had to read more, so I clicked over to this:

Just Stimming

where I read this:

Quiet Hands

And thought, “Oh my God, we ALL need to read this.”

And then I read more. And I came to this:

Dear “Autism Parents”

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:

Response

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:

Please, Please Believe Me

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 juststimming@gmail.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.

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29 thoughts on “all roads lead to disclosure

  1. Jess, PLEASE let me send you a copy of “Ben Has Autism, Ben Is Awesome” – this is exactly why I wrote it, and why I want families to read it with their ASD children. Our kids have to grow up knowing that there are lots of other people out there with similar challenges and strengths – great strengths – and that their autism is just one of the many things that make them special and beautiful. There is no shame in that word. Email me your mailing address, or check out some reviews from Stuart Duncan etc here: http://notanaffliction.blogspot.com/p/my-book-coming-very-soon.html

  2. The TPGA is going to be jammed into more than a few stockings around here. I love the blog, and am grateful for the information and the tone of the book’s contributors (including and especially Jess : )).

    I will not make light of my son’s–or anyone’s–challenges. But I will not let anyone think that being autistic is any more, or less, his essence than is his humor, intelligence, kindness, sensitivity, and fierce love for his family.

    Just ask Brooke! She could tell us that the great lesson of Godspell is that we are all different, but that learning to appreciate difference is the great opportunity of humanity.

    Merry Christmas all!

    Karin

  3. This is wonderful Jess, thanks for sharing. I had a good friend tell me once that “labels were for files not children,” and a relative of mine, whose 10YO child is on the spectrum, kept it a secret until she found out about my 2YO being diagnosed. She also suggested I kept it a secret as she had done. I am proud to say I didn’t listen. I have started an online petition where I ask my target agencies to start a public awareness campaign the same way they promote an end to bullying and getting flu shots. Ignorance around the disorder needs to end, so that our kids can grow in a society that accepts them, and includes them.

  4. Thank You Jess!!! Like you I have always been open and honest with my son regarding his diagnosis just as I have been with correct names for body parts. We speak of it like it isn’t a big deal, so it’s not. This year in 2nd grade as part of a writing project, the children were asked to draw a map of their brains. My son divided his brain into parts and included books, Lego, Wii, Asperger’s, SPD and ADHD. The teacher did not want to hang his creation in the hall with the other maps without my permission. Of course I gave permission and I told her that my son owns his diagnosis, it is part of him. After reading these posts I KNOW I have made the right call.

  5. I struggle so much here. I vacillate between telling people and being open and not wanting to “label” him.Someone disagrees either way I guess. However, that said I’ve begun to really work at getting you leave me breadless out there because I feel that the more people we get to understand our kids the more services can be created for support.

  6. Yes, yes, yes, yes, and yes to all of this. That article “The Obsessive Joy of Autism” has been open in my browser for days & days – I keep re-reading & finding more in it. I sent it to Jacob’s ABA therapist and she thanked me. This is SUCH important stuff, thank you for bringing it wider attention!

  7. after getting the diagnosis so late…and feeling so bitter about it, i’ve always struggled with the concept of disclosure. i’ve been reluctant to disclose to myself, let alone others, so this is an issue i go back to, over and over. makes me appreciate posts like yours, and the ones you link to, gives me a chance to revisit, re-think about it all.

  8. Thank you for this. Every time I talk to teachers about letting my daughter’s class know about her difficulties I get very strange looks, like there’s some danger there. I don’t think so. Her classmates have already labeled her as “weird”. Why not exchange that label for the correct one? Do the schools really believe they can plunk an autistic kid in a classroom without preparing their classmates and call this inclusion?

    I have read my state’s anti-bullying program. One of the things they tell the kids is to stay with their friends. What if they have no friends?

  9. yes, thank you!
    In our case I raise my son with aspergers the way I would imagine raising a gay or lesbian child, with pride in who he is. I want him to know himself, know the label, know what it means to him, know he is not alone, know we are proud of him as a whole human being and not ‘in spite of’ anything. I want him to find community, I so desperately want to find him role models because no matter how much I love him there are things I will never understand, I want him to learn to advocate for himself and what he needs and feel entitled to ask for it. This is what I see owernership of the label allowing for. I sincerely hope I am not living in a fantasy world.

    • I don’t know how old your son is…we have tried to raise our Aspie son in a similar fashion but as of late we are running into a newfound shame and embarrassment at the label.

      He is in his first year of middle school and his only wish (as with most middle school kids, I imagine) is to remain under the radar as much as possible. And to him, having to go to resource period or speech does not allow him to keep as low of a profile as he’d like.

      So right now I’d characterize him as living a “double life”…sneaking off to resource, hoping his few friends won’t find out and reject him. We moved to our community fairly recently and we (his parents) are comfortable with disclosing his diagnosis to the parents of his new friends, but at age 12 my son feels like it’s up to him whether or not he wants to tell his friends. So far he hasn’t — although to be fair so far his friendships seem to be doing just fine. And yet, to my dismay and sadness, he continues to live in fear that he will be “found out.” It just breaks my heart.

      • Audra – that sounds so difficult, I appreciate your perspective. My son is 5 now so a world of difference between that and middle school and I am desperate to use what time I have left to distill some pride and sense of community in him while I still can. Then as he grows I hope he can begin to tell me what feels safe to him in terms of disclosure just as you have with your son and I will respect that wish. It does sound heart breaking though.

  10. WOW…Thank you for putting this out there. In our family, teling was never an issue. My son told us from a very early age that his brain didn’t work like everyobody else’s….he even identified himslef as having a brain that worked like a friend of his’ brain….a friend who we knew had Asperger’s…and this was long before our son’s official diagnosis….so I often joke that we didn’t have to tell him…he told us!

  11. There is a stigma in disclosure as an adult, I find. When I do disclose, there is a vibe of, “This is awkward. You just told us that you’re mentally ill (misconception). I don’t know what to say now.” They don’t know how to react.

  12. Can’t wait to read these links! We have almost exactly the same reasons for “disclosure”, and I also agree that it is an intensely personal decision, and parents know best with the “how” and “when”. Fantastic post!

  13. Just as I have found it so inspiring and empowering to be able to identify as the parent of an autistic child, I hope my son will find his community. We speak openly about his autism, and I hope someday he will too.

    I understand the “label” issue. It isn’t that I don’t want my son to identify as autistic – that is up to him – but I want him to know that he can also identify with anyone he wants.

    I think we as parents hope that the world will see our children as all that they are – autistic and so much else. Perhaps owning the label, and educating is the best path toward that.

  14. As family and friends struggled with how to handle his diagnosis, I heard many times ‘But he doesn’t really act THAT autistic.”. Those words always stung and angered me, but only from my perspective. They were trivializing what I was going through. They were dismissing the hard stuff. But I let them go unchallenged, because they were just trying to navigate the unfamiliar, themselves. Wanting to say something but not knowing what to say. And I let them go unchallenged because I wasn’t brave. I was still pretty badly beaten up myself and just didn’t have it in me, yet.

    Now those words sting and anger me from the perspective of my son. And now I am brave. And I will not tolerate it anymore. I will not be an angry mother waving my fist in the face of anyone who ‘compliments’ him by pointing out how not-autistic his behavior is at that moment. But, I will speak my mind. I will make it as comfortable as I can for them, smiling and reassuring them that it’s okay because they didn’t intend to offend. Maybe then, they will be more aware and less offended themselves.

    Thank you, Jess. Thank you so very much. Not all of us are writers, and these posts of yours and the posts you link give us the words to express to people in our lives what we really need to say. Being able to lay out words in a way that invite compassion and understanding is a gift. Thank you for sharing yours with us.

  15. This is a world I navigate on the fringes as I have a friend who’s son has Aspergers. Speaking of it openly has to be like all the other ‘issues’ that used to be covered up, it makes you a target but also begins understanding.

  16. Pingback: Why I decided to add pictures and videos. | Deceivingly Normal

  17. More and more, I am starting to think I may be a little on the spectrum myself. It never occurred to me to keep my son’s diagnosis secret. It would be like sending a Russian speaking child out into the English speaking world, and trying not to let anyone know that he doesn’t speak English!
    Thank you for the work you put into your blog. Thank you for sharing your family, your joys , your challenges with us. Thank you for letting us know that we are not alone. It helps . A lot.

  18. Thank you for this! We don’t yet have any diagnosis, but our not yet 3-year-old may be heading down this road. He’s in speech therapy now (and rockin’ it!) and has his first appointment with the developmental specialist in a few weeks. He has an older brother who is in first grade who loves to learn and is always asking questions about everything. He has asked why his little brother doesn’t talk much yet – he’s seen videos of himself at that age, and sees the other kids in his brother’s daycare class. We’ve told him that his brain just works a little differently than others. That there is nothing “wrong” with im, he just works differently. Big brother’s reaction? He’s concluded that his little brother who barely talks is actually a genius. “Albert Einsien didn’t talk until he was 5! And his brain definitely works different than most people because he’s the smartest person ever.” Then he went on about how quickly his little brother figures out toys, and how well he can build with his duplos. It warmed my heart that his big brother immediately sees his differences in such a positive way. We will continue to talk to him as we figure it all out. We now that he will be his little brother’s biggest advocate and they both need to understand who they are.

    On a side note, this blog has been such a blessing as we are navitgating through this. Thank you, Jess!

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