disclosure

Disclosure.

Telling our kids about their diagnoses.

I talk about it a lot.

Because I believe in it.

I believe that knowledge is power and knowledge of oneself is the greatest tool imaginable. I believe in honoring truth, both fundamental and individual. I believe that withholding truth creates secrets and secrets imply shame. I believe that our kids are misunderstood by so many, they deserve to be understood to whatever degree possible by themselves lest they begin to internalize and take as gospel the misperceptions of those around them.

I believe that they see and hear and process and understand a whole lot more than we give them credit for, verbal, intermittently verbal, pre-verbal or otherwise.

I don’t believe that a diagnosis creates or exacerbates a feeling of difference. I believe that being different creates a feeling of difference and that the knowledge that others share the same kind of difference creates connection and liberation and hope.

I believe that the only way we will ever demystify the words and remove their current stigmas is by personalizing them, making them real, making them about PEOPLE and not challenges or behaviors or needs. I believe that only then can we truly ask the rest of the world to understand, to exercise compassion.

I believe that labels like autism can serve as the keys to the doors that can otherwise isolate our kids, that make them think they are the only ones, and so too that they can be the keys to the community of autistics waiting on the other side whose experiences, while not identical, mirror our kids’ far more closely than anyone else’s.

I believe that giving our kids the knowledge that we have about them is a matter of fundamental respect for them.

I believe that speaking the words aloud chokes the weeds of shame and waters the flowers of pride.

Although it’s the product of God knows how many conversations, my perspective on disclosure has been most informed by Dr Stephen Shore.  Many, many years ago, I had the pleasure of listening to Stephen tell his story. Years later, I had the honor of joining him on a panel to tell ours. But it was that first meeting that validated everything I thought about disclosure.

Stephen was functionally nonverbal until he was five. His parents were told to institutionalize him. The medical establishment had nothing else to offer. His mom had other ideas. As he explains it, she essentially created her own Floortime / DRI models before they existed. She believed that by making the effort to join him where he was, she could reach him. And she did.

Above all, it was this that I took from Stephen’s story:

“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.”

His parents simply used the word, and in so doing, they took away its power to marginalize and instead imbued it with the power to explain, to understand, to connect.

All these years later, Stephen is better known as Dr Shore, college professor and world-renowned Autistic speaker and activist.

But if talking about it nonjudgmentally from the beginning is the ideal, where does that leave those who have yet to broach the topic? Well, I’d start here …

First and foremost, before going anywhere near your child, take a deep breath and leave your own anxieties far, far behind. Although it’s true for most of us, in my experience, there is no one more sensitive to the emotional vibes of others than those on the spectrum. Anxiety fosters anxiety; calm allows for calm. If you coil yourself into a bundle of nerves for a BIG TALK, you’re screwed from the start. BIG in this context means TO BE FEARED. Fear is what we’re trying to dismantle, not create.

So breathe. Take it easy. Start with whatever version of “Oh, hey, there’s something neat I’ve been meaning to tell you,” translates into your child’s language.

Your attitude and the way that you approach the whole ball of wax will set the tone. I know that’s a lot of pressure, but I believe it to be true. This fundamental piece of your child is either something that’s at once both challenging and wonderful – or — tragic news that you’re terrified to share. For my money, “It’s part of what makes you who you are, so it must be pretty awesome.” is always going to be the way to go, but that’s just me.

Many have asked for a template for the conversation itself. Again, largely based on Stephen’s model, here’s what I’ve got.

Talk about the child’s particular characteristics. Cite STRENGTHS FIRST, then align their strengths with their challenges. Identify those that can be used to offset each other, or those that might be defined as either, depending on environment (Hint: All of them).

For example, explain that while all of your child’s unbridled energy might be challenging when it comes time to have to sit still in the classroom, it’s why he can stay on the swings for so long even after other kids get tired. Explain that while it might be tough to do math in the way that we need to in school, it’s because he thinks in a different way that means that he is incredibly creative. Explain that while you know it can be hard to have to focus on things that she doesn’t really like to do, autism is also the reason that she has such a boundless and enviable passion for the things that she does love to do.

Explain that your child’s matrix of challenges and strengths, while unique to them and beautifully and perfectly arrayed, has enough commonalities with others to have a name. Tell them what it is.

If it’s developmentally appropriate, tell them about the luminaries who feature prominently in history or popular culture who are or were believed to be on the spectrum .. Newton, Einstein, Grandin, you know the drill.

Otherwise, talk about people who you know who are on the spectrum. Some may speak, some may not. Some may be commercially successful, some may be more unconventionally successful. Talk about how much you respect them and what they have, in various ways, accomplished. Tell your child how much you’ve learned from them. If you don’t have those people in your world, seek them out. If you don’t know where to find them, click over to any of those blogs on my blogroll under Vital Perspective from Autistic Adults. I know of no better way to show your child that you’re listening to them.

And wrap it up with the fact that autism is a pretty neat thing. That you know that it’s not always easy for them, and that it can sometimes make them feel different, but that it’s also what makes them fabulous, and not really so different after all. That part matters. Why? Because of the kid who put the gun to his head to try to “kill his autism,” because all he knew about it was that it was what made his life hard. That’s why.

So there it is.

Disclosure is not and never will be a one size fits all proposition. There is no age nor grade nor time of year that anyone can uniformly recommend to talk about all of this, other than from the moment that you know. The language that I’ve suggested here is meant to be a guide that you can translate into your family’s language. Much of it, if taken at face value, would be wholly inappropriate for my own daughter. For example, I have never told her that Newton was autistic because she hasn’t the foggiest idea who Isaac Newton was, nor would she be particularly impressed if she did. But I’ve talked at the dinner table about my autistic friends and how much I love their company and their insight. I’ve never sat her down for a rundown of strengths and challenges because that’s just not where we are, but I’ve told her that autism is part of who she is and I think it’s pretty damned cool.

The bottom line is that these are personal decisions and I have no idea nor do I claim to know what is best for you and your family. What I’ve written here are my thoughts on the topic as they’ve come together over years of talking (in various ways) to autistic people across the country and across the spectrum about their experiences and how they came to know who they are.

And this, which I wrote a long time ago in a conversation about person-first language

My girl will undoubtedly face ignorance as she steps further into the world. When she does, I want her armed with an impenetrable wall of self-esteem. Of belief that just as there are serious challenges in her autism, there are also gifts — her incredible memory, her uncanny ability to repeat what she’s heard or read, her pitch-perfect imitation of accents — and so much more that we will have the joy of watching emerge as she grows.

When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic, so? I’m damned proud of it.”

Autism isn’t easy for me to talk about. This is why …

Because it isn’t mine. It isn’t, as neurotypical parents, ours. Rather, it’s part of who our children are, and it is therefore theirs to own, to define, and, God willing, as challenging as it may be, to take pride in.

Oh, and when you’re done talking (or before you start!) buy them this …

2012-11-30-lovemyselffrontcover[1]

 (Click on it to buy it.)

Because isn’t that the whole point?

Stay strong friends. You can do this.

xo

Jess

About these ads

30 thoughts on “disclosure

  1. This is such an important piece. It will be the next step for so many people. When I told my son about his autism, it was important that I not cry in the moment, but I did after. And I think that’s important for parents to know. We can love our kids and celebrate their amazing qualities, but it’s also ok to mourn in the reality of how hard the road will be sometimes.

    • thank you, shannon. that’s a really important point. we are entitled to our feelings around all of it – our fear for the future, for all the unkowns, all of the ‘stuff’ that comes with being a parent on this journey. and yes, to cry later if that’s what we need to do. the point i wanted to make is that for me, it’s important to keep my ‘stuff’ about autism from being my daughter’s stuff. that my fears shouldn’t be hers. i really appreciate you addressing this. it matters.

      xoxo

  2. I have told both of my children about their autism. Their not knowing would create more anxiety in their creative minds than the knowing. They know that they are different, so give them a medical reason instead of them thinking that they are “weird” or “stupid” or “slow” or “a retard”. Always tell them the truth, then they know that they can always trust you to tell them the truth.

    • Always tell them the truth, then they know that they can always trust you to tell them the truth.

      oh, how i love that. yes.

  3. I literally just posted about my “autism talk” with my six-year-old this morning. I’m thrilled to say it went beautifully. Not only did he embrace the fact that he has it just like his older brother, he was proud to have it too. I read a book called “I Am Utterly Unique” to him by Elaine Marie Larson afterwards, and that seemed to cement the positives even further. Thanks for posting this, a total validation moment for me!

  4. “Honey, come here. I need to tell you something. I wasn’t sure you would understand when you were younger, so we decided not to mention it. But you’re old enough now to know. Remember how you always felt different from your sisters? That’s because you’re a boy.”

    Not mentioning autism until your child is older is like dressing them up as girls when they’re boys. Even though that sounds funny, I mean it. I think parents are right to wait until they feel positive about autism and what it means to themselves. But don’t do it for your kid. Recognise that it’s your own discomfort and acceptance of the diagnosis that you need to grapple with. Your kid already knows they’re different, they just don’t have an explanation. Contrast that with growing up in a family where it’s the most normal thing in the world to be different, to have autism and to have that knowledge and to have that frame of reference to gain more knowledge about yourself, and hopefully you will know what I mean. It’s being a boy in a girl world. A kid needs some sort of reference.

    • this ..

      I think parents are right to wait until they feel positive about autism and what it means to themselves. But don’t do it for your kid. Recognise that it’s your own discomfort and acceptance of the diagnosis that you need to grapple with. Your kid already knows they’re different, they just don’t have an explanation.

      yes.

      that.

      thank you, lady. as always.

      • Yeah the analogy just got stuck in my head so I had to write it down, but Jess says pretty much the exact same thing, which is why I adore her so much.

        OK, that sounds odd. She’s adorable whether I agree with her or not. The agreement helps the adorbs, though. :P

  5. Thank you. We have started to tell my son about his autism…and we have done it slowly as he is ready. We have been approach in this similarly…strengths first, then challenges. He does seem to be absorbing it. And it is very worth it.

  6. The only thing I think you’re leaving out here is respecting our children where they are. This is overwhelming for my 12-year-old boy. I’ve always talked about his autism, even before his eventual diagnosis, but he refuses to take it on. When I try to push it with him, he gets upset, angry. He is FINE with being pulled out of classes for therapies, with being in special ed classes when needed, with going to OT (when he used to), with all of it. Beyond fine. He thinks it’s awesome to have all these pretty ladies and “cool dudes” spend one-on-one time with him. But he doesn’t think he HAS ‘challenges’ or even really ‘differences.’ It’s not logical, but that’s what it is. All I know is that even the most innocuous of comments about autism lead either to a shutdown or to tears. “This makes me uncomfortable,” he’ll say. And when I ask why, all I get is, “I don’t know!”

    And no, it’s not about anything I’ve said to him in the past, because his autism diagnosis was a day of celebration, after years of trying to get him help and being rebuffed or put off because he’s different even from the diagnosis and nobody knew what to do with it, with us, with him. And no, it’s not about self-loathing or even fear of other autistics; the kid is a literal ASD magnet. Put him in a room full of complete strangers, and when he finally makes contact with another child, guaranTEED it will be one who is some kind of special needs kid. He’s thriving socially in a middle school special ed program, after years of floundering seriously in our attempt to keep him included in elementary. I’ve never seen him so happy.

    And yet, bring it up? And boom. Shut down. Tears. Anger at me for pushing it, even if ‘pushing it’ is only a couple of words as an aside. Try to tell him that he’s not alone? That the thing he’s struggling with at that moment…or, when that fails, the thing he struggled with yesterday…is something many people just like him struggle with? Again: shut down. Tears. Clear, obvious, psychological pain. I’ve never been able to get past the start of even a single sentence. He will not listen. It hurts him for reasons neither he nor I can articulate.

    So, sometimes, the right thing to do is to drop it. Acknowledge that the child isn’t ready, and that it’s not about you–or, in this case, ME and my need to be a Great Autism Mom. If everyone in the community is telling you that you need to be open with your kid, and you’re not being open with your kid, you must be failing him, right? No. the door is open, and if he wants to walk through it, that’s great. But for now, he’s not ready to self-identify, or to explore what it means to be autistic. And just like with the diagnosis itself, I think I need to learn how to be OK with that. Its’s THIS part that hurts me way way WAY more than having an autistic child; the not being able to celebrate his differences with him and have all these great moments that you all talk about having with your kids as they celebrate themselves.

    Talk about your ironies, huh?

    • to me, this is understanding your child’s language .. knowing what works for him and what doesn’t. and yeah, it’s hard, but you’re respecting what he needs in regard to who he is, rather than what you want him to want or need him to need. it’s beautiful, and i think that’s the best kind of parenting there is. bravo, lady.

    • I’m a speech pathologist, and have seen many kids at the middle school ages regardless of their speech disability who want to deny they have a problem. They do not want to be noticed as different in any way in middle school when even their height or hair color can be teased. He will be going through a grief process that will end in acceptance, but it will take time until he accepts all of himself. Then you can celebrate!

  7. Again thank you! Today is my SECOND D-day as a parent. This time for my 12 yr old!! (Last year my 18 month old was diagnosed..I hate the way that sounds..I’ve come to see that she’s not sick!! Let’s say identified!) And today, once again, it is your words that bring a wonderful comfort to my heart and smile to my face when I needed it! What a fitting post for my oldest daughters id-day! I think we might just have to celebrate.

  8. This is such an important topic. As much as possible, our children deserve to know as much as they can about themselves.
    We were lucky in a way. Our firstborn wasn’t diagnosed until he was five, with Aspergers. So he was able to understand that he had been struggling. And about two weeks later, when I told him about the “special way his brain works” and “isn’t it pretty cool?” he was able to absorb it, and embrace it. He was (and is) very proud of his autism. So when his sister was diagnosed a year and a half later, she finally got to join the cool club, she gets her own autism – how fun is that? And now with my youngest, who is more profoundly autistic, that word, that label, is just part of being part of this family. In our house autism is the normal. It’s us NTs that are different. That’s not to say we don’t recognize the challenges – there are many, but we try to frame it as the other people just not understanding because they don’t have autism. So maybe Mom needs to translate for them. We have always been very aware of how hiding a disability makes it seem like something to be ashamed of and we never wanted that for our children. (That’s a big part of why any medical equipment we get is always very brightly and fashionably colored. ;) )

  9. So, this is what I’m struggling with. My 7 year old receives services through school for “autistic-like” behaviors, but his official diagnosis is “Communication Disorder Not Otherwise Specified,” meaning that he doesn’t qualify for support through our insurance company or the Regional Centers here in California. So, I hesitate to tell him he has autism, even though he has challenges in the same areas that his peers with an autism diagnosis do. We talk about gifts and challenges, for now.

  10. Don’t forget Stephen Speilberg on your list of famous ASD folks…he’s openly claimed membership in the club. Bill Gates has not said he has autism, but he is generally believed to be part of the club as well.

  11. I agree yet one son is comfortable and one is not. He much prefers to talk about his ADHD. I am letting it alone for now. I think it is because he has grown up with his brother who has serve meltdowns.

  12. I ABSOLUTELY AGREE ABOUT EXPLAINING TO OUR KIDS ABOUT THEIR AUTISM, ANYWAY THEY PERCEIVE THEY FUNCTION DIFFERENTLY AND AS THEY ARE ABLE TO UNDERSTAND THEIR WEAK AND STRONG CIRCUMSTANCES THEY WILL BE IN A BETTER POSITION TO TAKE DECISIONS AND HELP THEMSELVES BY THE TIME WE ARE NOT THERE WITH THEM. MY BOY ASKED ME SINCE HE WAS IN SECOND GRADE AND OF COURSE HE FEELS IMPOTENCE AND FRUSTRATION FOR NOT BEING ABLE TO SOCIALIZE BUT AT THE SAME TIME HE KNOWS THAT BECAUSE OF HIS AUTISM HE IS BRIGHT FOR MATH AND VISUALIZATION AND HAS A MUSICAL EAR..THANKS GOD FOR NEURODIVERSITY.(THE GOOD STUFF)

  13. I love this. It reminds me of a story of a couple that was preparing to take their adopted newborn daughter home from the hospital. Talking with their social worker, the mom whispered – “When should we tell her she’s adopted?” And the social worker whispered back – “On the car ride home.”

    Words become taboo because we choose to make them taboo. When we talk about anything – medical conditions, learning disabilities, mental illness, autism! – without shame or embarrassment, then those topics stop carrying that stigma. I so support the way you’ve approached this with BOTH of your girls. You’re a shining example to all parents!

  14. Pingback: Everyday Superhero | Try Defying Gravity

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s