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The Dance Of Disclosure

The Dance Of Disclosure

By Mir Kamin

dis·clo·sure
/disˈklōZHər/
noun
the action of making new or secret information known.

In a perfect world, everyone gets to be whoever they are, and no one judges them for it. Right? That’s the fantasy? Because the reality is that everyone is constantly in danger of being judged for… well… everything. And there is no stickier time for the judgment of others than during the teenage years. This is when kids either want to “be like everyone else” or be exactly unlike everyone else, but on their own terms. They want to control the narrative, and this is no time for anything which (they feel) may make them look weak or lacking.

And so, my friends, my family has arrived at yet another chapter conspicuously absent from the parenting manual: Disclosure of special needs.

Many, many years ago, before any diagnoses or labels or the in-your-face realities of raising kids with special needs, my youngest was clearly different, and struggling, and we were on a mission to figure out what he needed. I met some amazing and helpful people during that journey, but for every one of them, I also met (or already knew) someone who wanted to caution me against having him formally diagnosed. “People will judge,” I was told (over and over). “The label is all anyone will see,” someone told me. This point of view was—and remains—baffling to me, because it turns out that you can’t be, I don’t know, less autistic if you simply refuse the label out of fear of stigma. And from where I’m sitting, the label has gotten us services, accommodations, and often patience and understanding we might not have otherwise had. The label isn’t everything, but I see it as a useful tool. Being afraid or ashamed of it has never made any sense to me.

[And as a quick aside, which will have every fellow autism parent nodding, I bet: My son started occupational and social therapies when he was 5. My daughter—like many autistic girls/women who manage to fly under the radar—wasn’t diagnosed until she was 14. Go on, guess who’s arguably “better-adjusted” at this point. Guess who’s more comfortable with the label. Yeah.]

When the kids were little, disclosure was up to me, and I disclosed all over the darn place. “He’s autistic!” I would volunteer, the moment his behavior strayed from the norm or I noticed someone side-eyeing him. “It’s not an excuse but it is an explanation,” I drilled into both kids, hoping they understood the nuances of explanation vs. still understanding (and trying to work within) societal norms when expected. “I’m autistic so you might find me a little weird, or I might not look at you while you’re talking, but that’s okay. Just tell me if I do something that’s bothering you,” I would overhear my son offer by way of introduction. We’ve always been proud of who he is, and I’ve always loved those moments where it’s clear he’s comfortable in his own skin. My daughter has always been much (much much) less comfortable with disclosure, due, I’m sure, to a combination of later diagnoses, her inherent personality, being a girl (and much more attuned to social stigma), and the fact that at nearly 17, she is still working on that whole “comfortable in her own skin” thing.

High school means I show up for IEP meetings and advocate for the kids at school, but I let them take the lead in terms of what they’re willing to tell their teachers and peers. My son is still fine with letting his teachers know he’s autistic. I notice he doesn’t volunteer it to other kids as often as he used to, and he’s also better at “passing” than he used to be, so maybe he doesn’t feel the need (and that’s fine). My daughter is more complicated, in every possible way. She has multiple diagnoses and she has allowed them onto her IEP bit by bit, but I know a lot of what’s on there she has chosen not to share with her peers.

Now we are entering the realm of interviews—for special programs, for jobs, for college—and maybe I shouldn’t have been surprised, but I find both of my teens resisting any encouragement to disclose where their special needs may be impacting them. “I just don’t think it’s relevant,” my son said to me with a completely straight face, which made me laugh (which made him mad; oops). “It’s going to sound like an excuse,” my daughter said, her mouth set in that hard line I’ve become all-too-familiar with, the one that means “I hate that this is hard for me.” They don’t want special treatment, either of them. And yet, they have different needs and challenges, and sometimes just making the other people in the room aware of them is enough.

“It’s not an excuse, it’s an explanation,” I repeat, the words automatic, but my tone belying the frustration I feel on their behalf. How do you walk that fine line between demonstrating self-awareness and perhaps being taken as making lame excuses, when you’re not even old enough to vote? I know full-grown adults who are still terrible at this. Is it too much to expect my teenagers to advocate for themselves in productive ways when it means disclosing the parts of themselves about which they feel the most insecure?

There have been some crushing disappointments, lately… some which, I’d argue, might’ve been avoided or at least somewhat alleviated if the kid in question had been willing to disclose a bit more. But that’s Monday morning quarterbacking, so I could be wrong (and even if I’m not, what’s done is done). In the spirit of hope, though, here’s two recent real-world victories:

1) Getting the College Board to grant any sort of SAT testing accommodations appears to require an act of Congress, and my daughter has applied through the school and been turned down several times, already. After her last scores came back (not terrible, but more reflective of her learning disability rather than her capabilities), she did her own research and decided to take the ACT (and apply for testing accommodations there), instead. She got herself registered, rounded up her 50-page accommodations packet entirely on her own—which included basically sharing her entire diagnostic history, which I know was scary for her—and got everything in order well ahead of deadline. Her extended time accommodation was granted (woohoo!) and she is feeling relieved and ready to test. She disclosed and got what she needed.

2) My son recently attended a new-to-him club at school and at his first meeting he misunderstood something that was being discussed; he thought the advisor was asking existing members to weigh in on something when in fact she wanted everyone to chime in. He lost himself in a book while the discussion went on around him, much to the consternation of the advisor (who, understandably, thought he didn’t want to be there). With some gentle encouragement at home, he returned to apologize the next day. And even though he’d argued with me that disclosing was unnecessary, he ended up explaining that sometimes he misses social cues because of his autism, and he hadn’t meant to be rude. It turns out that the teacher has two autistic sons of her own; the apology was accepted and a rapport was formed.

What I tell my kids is this: Disclosing is always going to make you feel vulnerable, but it’s also the only way to make sure you’re being taken for who you really are. I’ll keep encouraging them to disclose and be comfortable with who they are, and I’ll also keep hoping that others can appreciate them, challenges and all.

Mir Kamin
About the Author

Mir Kamin

Mir Kamin began writing about her life online over a decade ago, back when she was a divorced mom trying to raise two regular little kids and figure out what she wanted to be when she grew up. Now ...

Mir Kamin began writing about her life online over a decade ago, back when she was a divorced mom trying to raise two regular little kids and figure out what she wanted to be when she grew up. Now her life looks very different than it did back then: Those little kids turned into anything-but-regular teenagers, she is remarried, and somehow she’s become one of those people who talks to her dogs in a high-pitched baby voice. Along the way she’s continued chronicling the everyday at Woulda Coulda Shoulda, plus she’s bringing you daily bargain therapy at Want Not. The good news is that Mir grew up and became a writer and she still really likes hanging out with her kids; the bad news is that her hair is a lot grayer than it used to be.

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Comments

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  • Heather D.

    I love reading your posts about how your kids navigate through their teenage lives with obstacles they have. My son, who is ADHD, joined a club this year. I was worried he would not try any clubs or sports because he tends to have a hard time with the socialization aspect. This club is wonderful and he has found his place. The kids are wonderful and have made him feel normal, well as normal as a teenager can feel. He feels like one of the team and he doesn’t feel like “everyone doesn’t like me”, which I use to get a lot. He now plans on playing sports next year. The stepping stones are sometimes heartbreaking and sometimes amazing. I am glad this stepping stone has turned out so well for mine, and for yours.

  • Kim too

    Having received my ADD diagnosis at 48, I’m working hard to make sure my daughter understands hers as thoroughly as possible.  I love the Explanation,not Excuse phrase.

    The explanation I use with people is that I have myopia and astigmatism: if I want to see like everyone else, I need to put on my glasses.  At home, I can get along fine without them.  I also have ADD, so if I want my brain to function the way other people’s do, I take my meds.  I don’t make moral judgements about my eyes, I refuse to make them for my brain. I’ve experienced firsthand how the meds make difference for me and my kid – judge all you want, world, I’m not going to deny them to her.

    I think all this stuff is going to become less stigmatized as time goes on, but I’m also aware that I don’t have anything riding on my little spiel, either.  I don’t answer to anybody but family these days.  It will be interesting to see how my girls’ lives unfold.

    • I wish the rest of the world wouldn’t make moral judgments about the brain. Love your attitude!!

  • Lucinda

    1) I love the victories you shared.  Each situation is unique and the decision to disclose needs to be made as each one comes up.  Looks like that is what your kids are learning to do.

    2) I don’t have their issues but I have chronic illness which has prevented me from doing things I wish I could do and left flaking out on friends I really cared about.  Sometimes I disclose, sometimes I don’t because sometimes you just get tired of explaining.  Maybe that is the case sometimes for the kids too?  I don’t know.  Just a thought.

    Regardless, you continue to amaze and inspire me as you handle all of this and grow children who never doubt how very much they are loved.

  • Jodie

    Mir, watching you navigate all this with Monkey and Chickadee has been so so helpful as I start the journey with my oldest daughter.  I recently got into a heated debate in my mom’s group about should you push for diagnosis or not.  You explained it so much more eloquently than I did.  

    Thanks for continuing to share and show such a great example of how to respect their stories while helping the sisterhood.

    • I suspect that folks who are anti-label are fearful of discrimination/judgment, but most of our experiences with being able to explain “this is an actual thing with a label and everything” have been good ones. (Not all, but most.) I hope I’m teaching my kids that it’s always better to know more about yourself… I couldn’t very well hope for acceptance from others if I wasn’t teaching them to accept themselves, right? 🙂

  • Ally

    So my biggest fear with getting an actual diagnosis is the potential that if they ever wanted to join the military they wouldn’t be able to. We live in a small military town, and I have a lot of friends who are recruiters. Any medical conditions that have documentation usually rule out the possibility of someone joining. I’m sure most people don’t think or care about this. My children love living hear and all of them want to join when they grow up (at this point, they are still very little). What are your thoughts about this?

    • Honestly I don’t see the military as being anything either of my kids would ever pick, so I haven’t thought about it at all. But does, say, an autism diagnosis truly preclude joining the military? That doesn’t sound right to me (hello, discrimination, plus many autistics are particularly well-suited to stringent rules and regulations). And… if getting a formal diagnosis of a condition you actually have keeps you from a certain job, how is not finding out or hiding it in order to pursue that job a good thing?

      Disclaimer: I really don’t know, but through my Google Fu it appears to me that issues such as autism and ADHD are addressed on a case-by-case basis and not necessarily a barrier, which sounds reasonable to me.

  • Yay for Mir’s offspring! Both are making wonderful gains.

    That whole refuse-to-label thing drives me nuts. I’ve got news for them. Our offspring will get labeled, with tags that are far less acceptable than autism. Do people really think it isn’t noticed if there is no label attached? 

    There can be lots of anger when people don’t realize until they are adults why they had so many difficulties, and never felt as if they fit in. That anger is compounded if they discover that that their parents knew, and hid it from them.

    On SAT (non) accommodations: My youngest had surgery on her ankle shortly before she was scheduled to take the SAT. I called and asked if she could bring in a simple camping stool to prop her foot up on. No. Could she fold up her jacket on an empty chair and prop her foot up? No. Could she do anything to prevent her form being in intense pain during the exam? No. I was afraid to ask if she would be allowed to use her crutches to enter and exit the room, for fear they would kick them out from under her.

    • I remember you sharing about the SAT thing in a previous post, Karen! Unbelievable!! I am definitely team ACT from now on. 😉

      As for the label stuff, yes yes YES. Of all the difficulties my kids do and will encounter, feeling like I don’t accept them or hid things from them will NOT be on the list. No thanks.

  • Stacy

    I was a TA, and it’s much easier working with a student who disclosed they may need extra time for a test (but often didn’t need it), than dealing with someone after the test (who didn’t disclose), when they weren’t happy with their grade and felt they should get to retake the test (you don’t get to retake at that point).  It’s much better to disclose and then not need the accommodations than struggle.   I don’t know any professor or TA who thought working with a special needs student was a big deal: our job was to help people learn.

    • Erin

      I’m a college professor and was about to say exactly this, Stacy!  This semester, I had a student entitled to accommodations who only mentioned them 10 minutes before our (only) exam when he was saying, “Look, I’m entitled to these but I don’t want to take them.”  He did very poorly on the exam and later admitted he should have taken the accommodations (by requesting them in advance, of course).

      I felt terrible–I firmly feel that any student should be given whatever accommodations they need if it helps them succeed.  This relates to Kim Too’s point above–I make NO moral judgments about students’ need for accommodations, because there are no moral judgments to be made.  This student was visibly upset about disclosing his need for accommodations, and it made me so sad.  (Before he told me what was going on, I very seriously thought he was about to tell me he was being sent to prison!  He was that upset/nervous to tell me!)

      My son is 15 months, and I hope that should he ever need any accommodations he feels empowered enough to request them, and that anyone he encounters wouldn’t think to judge him.  I know that’s a utopian vision, but still.  I do think this stuff is getting better, however slowly.

    • Cheryl

      I find this interesting because a friend of mine was unable to get the ACT to offer accommodations for her dyslexia (extended time) but the SAT gave her what she requested with very few hoops to jump through. 

      My oldest son has autism and my youngest has dyslexia. We have told our oldest his diagnosis, but while my youngest has accommodations we have not chosen to disclose to him because he is likely to use that as an excuse to quit. 

  • Tiffany

    We too are working the disclosing of a disability on job applications for my almost 16 year old. She did disclose that she has a disability but I am concerned they will use that as a reason to not interview or hire her.
    Life was so much easier when I could control everything….

  • ADHDAdult

    Another thing about disclosing/ not disclosing that I am figuring out is that you can change your mind part way through. I got diagnosed with ADHD at the end of college so I never had accommodations, so didn’t disclose when I got to grad school. Then it turned out that in grad school I really needed a locker (because my other option was constantly forgetting things at home). Only discovered this because I happened to have one I didn’t need to share the first year. Second year I needed to specifically request that as an accommodation, so that was the first time I officially told the school. That year I also decided to give a speech about ADHD in my public speaking class, which was a HUGE step for me. 

    When I started my current job with the government. I asked the disability person about disclosing, and she said I should tell my supervisor if there was an accommodation I needed or if I thought it was an explanation for something he/she needed to know, but that the key was to disclose before an issue came up exactly so that it was an explanation rather than an excuse. I’m still trying to decide if I should disclose, a year in, though I may since headphones are not doing a great job replacing my need for a cubicle door…

    • Interesting. I guess it’s never completely straightforward, even in adulthood! But I like the note about disclosing prior to issues arising for sure.

  • I know this won’t be relevant for your kids quite yet, but it might be something to keep in mind for the future! A few years ago I got an internship through the Workforce Recruitment Program, which aims to bring disabled people into government work. Don’t get me wrong, I absolutely don’t think autism = disability, but…I don’t know, CollegeMe was really delighted by the idea that disclosing my disability-ish-situation (fibromyalgia) could actually get me a job, and maybe that would bring Monkey and Chickie some comfort too. 🙂

  • Dawn

    As a professor, I find it so much easier to help students who disclose. It is also much easier, as noted above, when students do so ahead of time. We have many students and we have no way of knowing what is going on for our students u less we are told. At my institution, there is a middle ground: students can disclose everything to disability services, get accomodations, and present profs with a list of accomodations, without going into details. I recommend actually talking to professors though. We are real people, many of us have friends, relatives, and children with various different needs, and we want to help all of our students. Ps other advantage to disclosing in college is that you may be able to change to a different section of a class if a particular professor or TA is unresponsive.

    • Erin

      Yes!  I know I commented above, but I 100% second all of this, too, Dawn.  I never know what my students diagnoses are (unless they tell me, and they often do because I think they sense I “get it”).  But yes–in advance, so we can set up whatever help you need before it becomes a problem.  All I want is to be able to hep you succeed, students!

  • Michelle

    I am struggling with a disclosure issue right now. My 10 year old is usually very open about his autism but recently he started a spring sport and my spidey senses are tingling telling me that even though his diagnosis is on his sports application, this particular coach would be judgmental and not give my child the playing time he deserves. He does need small accomodations such as more thourough explanations of what is expected when say, he changes positions on the field, but he really is one of the better players out there. I fear my Mommabear will eat the coach if he treats my son differently so I do NOT want to disclose to the coach.