disclosure, presumption of competence, a phone call and a boat

I posted a couple of things on the Diary Facebook page this weekend that I really wanted to bring over here. Partly because I want them to be a part of my diary, a part of the record of Brooke’s childhood that she will someday be able to read if she so chooses. But also because I want them to be searchable. I want other parents and friends and teachers and therapists and doctors and anyone and everyone else who supports autistic people to be able to find these words if they need them.
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I want to make it very clear that no feathers were ruffled in the asking nor the answering of this question. I was truly grateful to the reader who wrote to ask if I ever think about what it would be like if we didn’t tell Brooke about her autism and who, in so doing, shared that her son doesn’t seem to be aware of his differences. I loved the question. I loved the opportunity to question myself and my beliefs about disclosure and I love where it led.
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As always, I acknowledge that no two people nor families are ever going to be the same and that these issues are far messier than they appear. I respect everyone’s right to handle this stuff in the way that they think is best for them and their children. What follows was my answer for us.
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Diary’s Facebook page, January 18th  …
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Last night, a reader asked if I ever think about what it would be like if we didn’t tell Brooke about her autism. She mentioned that her son doesn’t seem to be aware of his differences. This was my answer (edited slightly because I wrote it at midnight and well .. yeah.)I really don’t. I truly believe that our kids know and see a whole heck of a lot more than we may think they do. I see it every day as Brooke brings things up from long before she could communicate with us, and by God, it’s amazing to see the pieces coming together all these years later as she’s able, in her own way, to show me that she heard and absorbed and lived it all. All of it. Even when she was *seemingly* completely disengaged.And so now, when I see her *apparently* not getting something in the moment I just think, meh, we’ll talk about it when she brings it up. Maybe in a month, maybe in 5 years, but it’s all going in, getting stored in that beautiful mind until the day that she’s ready to process it.And I need to tell her that I know that. That I understand that, in her own way, she’s taking it all in. That I respect her. That I believe in her. For me, telling her who she is is part of how I do that.My kid is different. Very different. Beautifully, gorgeously, deliciously different, but different. Even if she may not appear to my limited senses to be aware of that, I don’t believe for a moment that she’s not. Or won’t be soon enough.Some things are harder for her. Connecting with people whose native language is different from hers is not easy. She struggles with things that come easily to the majority of her peers. She gets pulled out of class. She needs sensory breaks to keep going. She requires a lot of support just to get through a day. And I want her armed with why. I want her to know that it’s not some character flaw or some loss, lack, deficit, that it’s not because she’s broken or less-than or wrong.

I want her to know when she looks back that there was no shame, could not have possibly been shame because those who loved her were not ashamed, but proud to walk with her — proud to shout out loud, “It’s not just okay to be who you are; it’s perfect.”

I want her to know that she’s not alone, no matter how damned alone she might sometimes feel when she looks around and doesn’t see someone else like her in the room. I want her to know that there’s a community – a vibrant, beautiful, SUPPORTIVE community awaiting her. A community of people who can say, in their own ways, “We get it.” And I think that the key to the community is hashtag “autism” or Facebook or blog or twitter search “autism.” But without the word, there’s nothing to look for, no key to finding others who share some version of her wiring, who will understand her experience.

So no, I really don’t think about where we’d be without her knowing. It’s just not an option for me.

I wrote that very late last night. When I woke up this morning, there was an email notification in my inbox that Chavisory had liked a totally unrelated post of mine. The one about self-advocacy and the power of No. The WordPress email suggested that I go visit Chavisory’s blog and contained links to three random posts. One of them was this.

http://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/

Among the scores of gems in this post (seriously; it’s a *must* read) was this ..

“There’s so much more of life to live than having to wrench the most basic facts about yourself out of the fabric of the universe.”

Accident? Methinks not.

Thank you to the reader who asked the question, and to Chavisory for the real answer.

But then, as there so often is, there was more. More rolling around in my head like a snowball, gathering size and speed until finally, finally, setting off an avalanche of thought and Oh My God and Wait, This All Makes Sense Now. I can neither confirm nor deny that I woke Luau up to listen to my epiphany about how it all related to the presumption of competence and what that really means and the layers and the storage and the processing and the belief that she’s taking it all in and “Honey,” he finally said, “you know it’s nearly 1 a.m., right?” and yeah. I might have done that.
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Here’s part two …
Last night, as I wrote about why it’s so important to me to talk to Brooke about her autism, I also began to understand just what it means to me to Presume Competence, something that we hear a lot about but don’t always stop to define.You see, Brooke doesn’t yet *seem* to really grasp what autism is or what it means that she is autistic. Our “conversations” on the topic are still 99.9% one-sided and if she really understands them, she’s not yet able to communicate that to me. To me, presuming competence doesn’t mean assuming that she gets it. In fact, I think that would be a mistake.Here’s what it does mean to me …I believe that I am presuming competence by continuing to start the conversations and by continuing to look for ways to help her understand them. I believe I am presuming competence by continuing to tell her that autism must be a pretty cool thing because it’s part of her and she’s one of the coolest people I know. I believe I am presuming competence by telling her that, as challenging as autism can be for her, it is also the source of some pretty nifty gifts. I believe I am presuming competence by continuing to tell her that she is connected to others and by telling (and showing) her how much I respect those people to whom she is connected.But, again, it doesn’t mean assuming that she understands all of this right now.What I *am* assuming is that she’s taking it all in, absorbing it, holding onto it in her steel trap of a brain until the time comes when she’s amassed all the tools that she needs to peel back the stored layers and extract her truth. I’m presuming that even if she’s not yet ready to connect all the dots now, she *is* capable of learning, growing, evolving, tool-collecting and ultimately layer-peeling – in her time and in her way. That, to me, is what presuming competence is about.

Note: With Brooke’s permission, I snapped this photo of her dancing in front of the fire as I typed. She is, as always, a beautiful blur of unbridled possibility.

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Lastly, there was this.
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Yesterday, after I’d written about Brooke making her very first phone call ever and, well, screw it, it’s just so awesome that I’m going to reprint it here because, well, it’s my blog and I can so wheeeee, here goes …
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Brooke made a phone call last night. Like completely, totally, 100% independently. So independently that I didn’t even know she was doing it until I heard her say, “Hullo?” as soon as the phone starred started ringing on the other end and then, “Hullo?” again while it was still ringing and then, well, you get the idea but holy crap on toast, people, she MADE A PHONE CALL and the person that she chose to call was a FRIEND and yeah, the friend happens to be ten years older than her (which at ten is twice her age) but the connection of their autism and their shared view of the world and the number of things they both like and well, it all just trumps age and she was THRILLED that Brooke called and oh my God I still can’t get over this, my kid called a friend on the phone and the 59 seconds that they talked to each other before Brooke said, “I’m all done now, bye,” was just something to behold and all of this stuff that I’m always rambling on about – the autistic community awaiting our kids and the connection that autism can create and the way that the knowledge that others are out there provides an antidote to feelings of isolation – it was all there last night during the 59 seconds that my girl reached into the ether and made her very first phone call EVER to a young woman twice her age and halfway across the country who couldn’t possibly have been happier to take that call and, well, I’m trying to be profound here but really all I can say is, “Holy %?!$ my daughter made a phone call to a FRIEND!”
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After THAT was THIS, which I posted to my personal Facebook page like this …
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To Chloe and Amy and Ibby and Julia and Lydia and Kate and all my daughter’s other “big sisters” but I’m running out of my room … THIS …
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Oh, you guys, I think my heart might just explode. In what might be the most perfect post script ever written by the forces of the universe, this just happened ..A mom wrote to our local autism parent advocacy group to say that her daughter, an autistic third grader, is having trouble connecting with the girls in her school. She wrote to the group in hopes of finding other girls on the spectrum. When I asked Brooke if she might like to meet her, she said, “Yeah. I could be her Katie.”And with that, I reached out to the mom and explained that my daughter, a fifth grader a nearby school, would love to meet hers, and maybe even be her big sister. And then I cried.
And as I squealed with delight at the thought of my girl not only finding those who await her with open arms but opening her own arms in return, there was an image that wouldn’t let me go.
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This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.
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Captain Brooke, summer, 2013
 

23 thoughts on “disclosure, presumption of competence, a phone call and a boat

  1. I always say it is not about being labelled but about an explanation. There is a huge difference between the two.
    For my son writing is very hard. Given at 12 months he was not sitting up then we have made huge progress through the years.
    We talked this morning that he has many ideas/thoughts in his brain but getting them out on paper is hard because of bendy joints and stretchy muscles. So we are utilizing keyboarding on a tablet more and more. He is 7.
    Explanations help not only the child but those involved/around him or her as well.
    He emails my dad who lives abroad most days. It is great and develops many skills. My inspiration came from seeing your daughter’s emails.
    Have you every seen the video entitled ” the case against assistive technology”, it is on youtube and worth a watch….

  2. I agree, but also use disclosure very purposefully because, as you say, we’re not there as a community yet and for many, many people I know the diagnosis is still a well-guarded secret. The definition that I found for disclosure is:

    The act or process of revealing or uncovering.

    And the synonyms – revelation, declaration, announcement.

    I like those words. Revealing the gifts, uncovering the truth of who we are. Declaring our truth without shame. Announcing a connection to one a other. Building community. Dis-Closure to me connotes an opening, a blossoming, a stepping into light.

    • I wish I could do the same yet, from where I sit, and more importantly where I write, I feel like it’s dishonest to pretend not to see those who are still in that place. Until we acknowledge the negativity, understand the reasons for the secrecy, and question their validity when weighed against the myriad benefits of self-knowledge and the keys to community, I don’t know how anything can change.

  3. Thank you so much for your thoughtful postings. I follow them from a different perspective. I do not have a child with autism; instead, my father is going through a rapid decline due to (we think) Frontotemperal Dementia. In the space of three years he has gone from a fairly competent senior to someone with very little expressive verbal skills and declining physical skills. When I spend time with him, it’s hard to know if he can’t answer my question because he doesn’t understand it, or because I don’t give him enough time to answer, or he just can’t think of the words, or maybe he can think of the words but just can’t say them. In our case, we no longer have a presumption of competence. Sometimes there is echolalia, and we just don’t know if he is repeating our words because he *can* or because he wants to show his enthusiasm for our statement. Anyway, we (siblings, spouses, grandchildren) are working to continue to spend time with him as much as possible. Thank you again for your blog.

  4. Firstly…bravo! I wanted to quickly add before life takes me away again before I can leave a comment….that’s why I have celebrated birthdays and other traditions like Christmas. Rolling out all the traditions year after year since he was one years old and contenting to do so when I wasn’t sure what he was taking in and what it might have meant to him. Especially when ripping up the wrapping paper was more fun then playing with the toy that was hidden by it. I am so glad I followed my instincts because today he is 6 years old and the “routine” of these traditions that come once every year that we mark on the calendar bring him joy as he reminds me what we did the year before or the 2 years before that. When I wasn’t so sure he was taking it all in he was. So much so that last year when his little sister was turning 3 she was insisting she wanted to stay 2 and didn’t want a party, a cake and lots of people. My son got upset and kept telling her its a birthday you have cake and you blow out candles and people visit. She was not having anything of it. So we kept the party very small with just grandparents and when the cake came out with candles and everyone sang….she cried. What did her brother do? Got up…and went over to stand beside her chair, kissed her on the cheek and took a big breathe and blew the candles out for her with a big smile. Everyone was shocked. Yup he was taking it in:)

  5. I’m floating around close to disclosure as well. Our situation feels a bit strange because our son seems to be “twice exceptional” or whatever they call the combo of special needs and academic skills. Hubby is much the same (if he’s not on the spectrum, he has autistic tendencies – autism shows up diagnosed and undiagnosed on his side of the family). I guess I’m the “point man” when it comes to autism, though. Hubby floats back and forth about it acceptance-wise, I think because he sees himself in our DS. It’s like he doesn’t “get it” until an “obvious” indicator pops up (eye contact, flapping). The “obvious” stuff doesn’t happen very often, and hubby doesn’t see the social interactions as much since I’m the primary caretaker (of us all LOL).

    So I have to talk to him about how to talk to our son. The school is on board with me re. disclosing if we need to. So far, we haven’t seen any issues socially (he’s in 1st grade). He has friends he plays with, has been to some birthday parties. I expect that it will get more complicated with each grade, and I’m trying not to worry about it, but plan for it at the same time.

    How do you talk to your spouse about disclosure when they’re a combination of accepting and ambivalent? I talk about autism pretty freely in the home – I’m reading blogs, etc., so it’s a comfortable subject for me. DS has heard the word, but doesn’t ask about it and hasn’t brought up feeling different, etc. I just don’t want to screw up on this…

    • Okay, so .. reiterating again that I’m no expert, here are my thoughts. As far as talking to your spouse, how about taking yourself out of the equation and giving him some first-hand accounts to read? Chavisory’s post, Fiona’s post – let him see it from them rather than hearing it from you. As for your kiddo? Well, here’s what I wrote recently about the conversation ..

      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.

      The whole post is here ..

      https://adiaryofamom.wordpress.com/2013/10/07/disclosure-2/

      hope that helps. xo

      • Thanks! 🙂 I think I’m actually pretty comfortable about it, thanks to you and our autistic blogger friends. I am fascinated most of the time with how my son’s brain works (occassionally frustrated – but that’s normal for ANY parent of any kid). I’m going to ask his team at school what THEY see as his strengths, etc. I know they love to work with him. He has a great heart and is so sensitive.

        I’m more worried about getting hubby comfy with disclosure – to just our son, and/or to DS’s class if needed. Hubby has the “he’ll be like me” thing, and hubby didn’t have a diagnosis, additional supports, but I think DS has more of the communication/literal perception stuff going on. I’ll gather autistic bloggers experiences, talk to DS’s team at school a bit, and encourage a natural progression of the discussion. We’ll make it work.

        Thank you SOOOOOO much for your support!

  6. Dear Jess,

    I have been reading your blog for a while now and have never commented, but it has been infinitely helpful. I wanted to tell you a little story that I thought you might find interesting. My son, C, is almost 11 and was formally diagnosed with Autism in second grade. We opted not to tell C about his Autism because it seemed to us that he didn’t know he was different from the other children. However, as our younger son, B, noticed differences, it became imperative that we explain Autism to B so he would have a better understanding of his brother. Also, our two boys are very close, and we thought it was best that B understand that when his brother acts differently that it is okay and that there are ways that we can help him. Needless to say, a month ago, we decided it was time to explain to C that he is Autistic. I sat him down and explained that he is Autistic, and while it comes with challenges, it also comes with many gifts. I explained that the fact that he is so sensitive to sound has made him an excellent singer because he is so good at hearing pitch. I said that his attention to detail has helped him become an excellent artist. And I told him that his sensitivity helps him be compassionate. I don’t know how much he understood. However, a few days later, my younger son came upstairs and told me that his brother told him that he has something called Autism that gives him super powers…. Anyway, I thought you might find that relevant after today’s post. Super Powers … Hmmmm….

    The journey with our son has not been easy. Having your column to relate to – especially on the days when sadness is the overwhelming emotion – has been a gift. Thank you.

    Laurie Beth

  7. Super Powers…

    I am the “reader” who started this whole… I don’t even know what to call it. I have read every post, every reply, every wonderful and not so wonderful comment in regards to this topic that I started what, 5 days ago. I asked a question, looking for direction.

    I have to say that until I read Laurie Beth’s reply, I have never felt so, so alone. I do not have a large support group, in fact most of my family believes he will just “snap out of it”.

    My son (diagnosed at 23 months) just turned 5 and does not, at this point, think he is any different than anyone else. I KNOW that I will need to tell him that he is Autistic. Eventually he’s going to wonder why Tommy doesn’t lay on the ground and watch the wheels of his toy train go back and forth like he does. He will wonder why Susy doesn’t cover her ears and scream and cry when she hears a loud noise, a song she doesn’t like, or she’s just had too much. When I do, will that make him feel like less of a person or will he feel like he has super powers? I can only hope that when the time comes I can explain it to him as eloquently as it seems all of you have to your own children.

    I am extremely thankful to have come across your blog on FB. I find answers that sometimes I didn’t even know I had.

    I believe in super powers.

    • Thanks for writing this in response to my comment. I am not one to comment and knowing that something I said helped you even a little makes me so happy … I do not have a support group in place or any friends who have gone through this (and have heard the ‘he will snap out of it more
      times than I can count!), so I fly by the seat of my pants and just hope I am doing right by my boys. ..It is so scary to know what is the right thing to do – but you will know when you are ready… I hope your little guy thinks he has ‘super powers’ when the time is right – because in some ways – I think all Autistic children do in their own way …
      Again – I’m so glad my son’s comment helped a little … Just by reading your response – it seems to me you are doing an amazing job so far!

    • Hi I’s mama, I’m Ibby in the stuff above, friends with Jess and Chavisory. When I was 5, I don’t remember what I thought about myself exactly because I am not the world’s most introspective person, but throughout life I felt increasingly alien until finding more others. I found out I was called Autistic at a much earlier age than Chavisory did, and had mixed feelings about it. Partially, it made me cranky, as in, “Dang it, can’t I be normal in any way?” But mostly, it felt reasonable. And it gave me a way to find my community. PS: I totally have superpowers. 😀 One of them is my supermagic long distance remote hug, that removes aloneness forever. I give you this now, and invite you to keep in touch if you want to at all, because I would love it if you did, anyone who loves someone mesmerized by train wheels is a friend of mine! Clicking on my name above links to my blog, tinygracenotes, and you can get to my email and FB from there. xx Love, Ib

  8. Yupyupyupyesyesyes! I have lots of thoughts and feelings about how great this is. This first is that the boat Brooke is in in that photo is THE EXACT KIND OF BOAT I imagined when I first read that boat-metaphor quote. I’m just really impressed by her taste in boats, I guess. My other thoughts are only vaguely comprehensible, characteristically long-winded and potentially redundant. But I include them, because boats:

    Presuming competence/disclosure is important because…As much as it might be tempting to tell a kid (or a person, or whoever) that they’re “just different,” there’s a lot that “just different” doesn’t cover. In my case, the reason “just different” never really cut it was because all my various differences were so different from each other. Like, you’re supposed to be either Good-Different or Bad-Different; I was somehow both, and it turns out that doesn’t average out to Neutral-Different. They amplify each other: I’m too smart to be so stupid, too naive to be so rude, too compulsive to be so irresponsible, and so on. And all those oppositions work the other way too; how many non-verbal autistic people continue to be abused and discounted because they’re too silent to have language, too “unresponsive” to have emotions, and so forth.
    While in each case we might be described as “just different,” the net effect of all those just-differences makes autistic people like me out to be lazy, selfish, pointless freaks, and makes most (if not all) non-speaking autistic people out to be absent, blank non-persons. So telling your child they’re autistic isn’t about getting them to understand some complex identity concept. It’s about…(struggling for word-things here) giving them a box that all the parts of them fit inside. The word “autistic” is that box. Without it, our many differences will always seem incompatible with each other.
    Other people may often treat autistic kids/people like they are either impossible or nonexistent. But when you explain to someone that they’re autistic, you’re giving them a name, an idea, that enables them to see how they make sense as a kind of person who can be challenging for others to understand at times. “And,” not “but.” I think that, in a lot of ways, to be autistic means being able to make sense of yourself both despite and because of the fact you often don’t make sense to most other people.
    Disclosure means saying to a kid: “You are not a senseless, frustrating, random assortment of qualities, you are not incomprehensible as a person with thoughts and feelings, you are not a paradox, you are not a fluke, you are not a puzzle with pieces missing, or one piece in a missing puzzle; you’re a whole freaking autistic person. And just because people cannot always make sense of you does not mean you make no sense.”

    • Oh my heavens yes. Did I just say “oh my heavens”? What the … Anyway .. Yes. This –

      And just because people cannot always make sense of you does not mean you make no sense.

      That. So, so, so that.

      Thank you. Again.

    • SO MUCH TRUTH IN THE STRUGGLE ABOUT THE WORD DIFFERENT! Although I’m not autistic, I have tourettes syndrome which comes with its own daily questions of disclosure. While at first my parents told me to say something along the lines of “it’s just something I do sometimes” it being whatever tic I was experiencing, it just always seemed ridiculous to me to invest all this mystery and speculation around what usually ends up being a pretty explainable (while also not sometimes) thing. Labels are not hexes that give you those characteristics, they (when used correctly) just tell you that you’re not alone in whatever’s going on with you.

  9. Pingback: Disclosure | Lyssa and Me

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