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To Label Or Not To Label, That Is The Question

To Label Or Not To Label, That Is The Question

By Mir Kamin

Got tweens/teens? We’re trying a new advice column here at Alpha Mom to address your questions for the older-kid crowd. We hope you enjoy! And if you have a question to submit, hit me up at alphamomteens[at]gmail[dot]com.

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S writes:

I think my 14-year-old may be autistic, and his counselor agrees. He is a freshman in high school, he gets mostly As, some Bs, and no teacher has ever mentioned it, but he struggles socially (not that he really realizes that). He is sensitive to tastes and textures, small talk seems to elude him, he will come up and interrupt a conversation and go completely to a different topic and never realize that can be rude. There are so many examples. His 5th grade teacher told me once he’s on a different plane than the other kids and she meant it as in his giftedness, but I think there’s more to it. My question is, is there any point in having him formally tested? My husband says no, why put a label on him when he’s doing just fine, which I do see and his counselor agrees, but sometimes I wonder if his lack of organization, his difficulty in “catching” everything a teacher says (like when to turn in an assignment) and other things might be helped with a diagnosis? I’m wondering about your thoughts.

Oh, I have lots of thoughts about this. I feel like we talk about it quite a bit, here, but I’m always happy to revisit.

My opinion is that there are two schools of thought when it comes to kids and special needs: one camp believes Labels Are Bad And/Or Limiting, and the other believes that knowledge is power, no matter what. I fall into the second group; I believe labels are only bad or limiting when they are allowed to be viewed as a detriment instead of as useful information. This is a general philosophy of mine, extending to all sorts of things, but I feel especially passionate about it when it comes to quirky kids, and I’ll tell you why.

All forms of autism differences are now encompassed under the Autism Spectrum Disorder label, which I think is an important move for understanding neurodiversity because autism is indeed a whole spectrum, with some talking about “severity” and “life impact,” sure, but also pointing out that what is “normal” at some level becomes less so at a different level, and also that understanding and accommodation should be less about “what’s different” and more about “what helps,” if that makes sense. This spectrum model holds true for lots of differences—not every kid with ADHD is the same, not every learning disability presents identically in different people, etc.—and I like the focus shift from “Label X means Action Y” to “Label X is our starting point in terms of understanding and assistance.”

In addition, there are plenty of very-similar behavioral results in kids with some of these challenges which can be due to a variety of causes. Everything you’ve described can be part of an ASD diagnosis. It can also be part of simply being gifted. It’s also fairly typical for a child with ADHD. And finally, it wouldn’t be unusual for what you’ve described to be attributed to a learning disability of some type. Perhaps even more confusing, all of things I’ve just mentioned tend to overlap; it’s rare that a single one of these causes would exist without another (or another two or three!), meaning that it can be complicated to figure out the cause and thereby tailor the approach in creating change.

All of that said, here’s the bottom line of why I would advocate for formal testing: The more you know about the root cause of his difficulties, the more targeted your approach toward support can be. Do you have to know the cause, and/or is that the only way to help him? Of course not. But I think it’s very helpful. Just to give you an example from my own kids, there are many foibles they share in common. It would be tempting to approach each of them the same way to help correct issues, right? Let’s take the fact that both of my darling snowflakes often struggle with turning in schoolwork. Believe you me, we have tried… well, just about everything, I think, to help them each become more aware and self-sufficient in this area. But my son has trouble with it largely due to his autism (and the root, for him, goes back to difficulty even taking down the assignment in the first place, in a noisy, overwhelming environment; he often misses the work altogether), whereas my daughter has trouble with it largely due to her ADHD (and that means she takes it down, does the work, and then maybe just plumb forgets to turn it in). If we didn’t have a good grasp of where the problem starts, for each of them, it would be harder to solve.

I’m also going to add, here, that labels are not the scary things I guess maybe they once were. I find explanatory labels empowering, myself. I know too many adults who grew up knowing they were different but not how or why, who’ve lived the bulk of their lives thinking their differences were bad and should be hidden as much as possible. Both of my children experienced what I can only describe as palpable relief once we were able to say, “Hey, this is the deal: You’re different. It has a name, it means these things are more challenging for you, and here’s how we’re going to help.” Key phrases in our house include not just “knowledge is power,” but also, “this is an explanation, but not an excuse.” The label is not a Get Out Of Jail Free card. The label is there to help us understand and move forward. Embracing the label, oftentimes, means embracing the human it describes, and letting them know there’s no need for shame. This is who they are. (Although it’s an autism-centric post, the lovely Jean Winegardner recently wrote this awesome piece about talking to your kid about their differences, and I think it can be applied to all sorts of things beyond autism. Jean’s smart; you should go read that.)

From a purely pragmatic standpoint, here’s a few more things to know: You can ask the school to perform an evaluation, for free. Generally you can only ask for an eval if his school performance is impacted, and it would not be beyond the realm of possibility for the school to insist than an A/B student is “fine,” but then what you say in response is that 1) given his known IQ/giftedness, this is not the level of achievement that makes sense for him, and 2) he is experiencing emotional issues which are beginning to impact his school experience. I don’t think you’ll have trouble getting the evaluation. Once they come back with something, you will be able to put together either a 504 Plan or an IEP designed to support him better right now, which is great, but it is also great because having a diagnosis and a plan in place prior to college means it will be easier for him to get some assistance at college, if he continues his education that way. Developmental disabilities don’t vanish when our kids go to college, and having to do self-advocacy in a new environment is scary enough, as it is. The more pieces you are able to put in place for him now, in high school, the greater his chances of success, later.

Good luck!

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Don’t forget that you can submit your own question to alphamomteens[at]gmail[dot]com.

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

  • Jeannie

    I’m commenting as someone who doesn’t have a special needs child, but with a child who did undergo a great deal of testing to rule out some potential special needs: the testing was enormously helpful for us in identifying his areas of strength and areas of challenge. Much of the time it was things we already knew, but sometimes it wasn’t. And then finding new ways to address those challenges and understand them as a parent was really helpful.

    And with labels — in my case, at least, it was totally up to us who we shared the report with, if anyone at all. We did it for us and for our son, and if we hadn’t wanted to share it, we wouldn’t have. But it was great for us all — including him — to get an understanding of who he is, and how we can all work together to make things easier.

  • Jodie

    +1 to everything Mir says here.

    I’d also add that along with knowledge just generally being helpful, if a label comes along with a IEP or 504, it’s also a powerful tool for advocation when needed. My daughter has severe dyslexia and ADHD (inattentive type.) Of the seven teachers she has had so far, all but two of them were always willing to meet her where she was and accommodate to help without the need for an IEP. 

    One of the remaining two was prior to our IEP being an place and damned if it wasn’t like pulling teeth to get any common sense accommodations put in place (she literally fought letting E sit with her legs in front of her vs crossed.) The second teacher who started to go down this route was immediately cut off at the pass because we had a legally binding document agreed to by the school.  While baked goodies usually yield me what I need, it’s extremely helpful to have a legal tool at my disposal when needed.

    If you do end up on the IEP/504, I highly recommend reading Mir’s other posts. She’s got lots of great advice on navigating those meetings.

  • Danielle

    I just used your line, “this is an explanation not an excuse” at daycare for my autistic 4 year old daughter today. It was very helpful in my attempt to advocate for my child! Thanks!

  • Stephanie

    Weighing in on testing, from an educator’s side of the argument. Having a diagnosis and an IEP is a powerful tool.  It legally spells out what exactly the school has to provide in the way of accommodations and assistance.  If you don’t have one, it can be hit or miss (and, it’s sometimes out of the hands of the teachers, too–money is a factor, too).  And Mir’s comments about college and having a plan in place before your son gets there are spot on.  I’m a strong believer in knowledge as power. Having a label that explains your son’s strengths and limitations gives you more information to better help him navigate all of the ups and downs of school and life as a teenager. 

  • Anon

    Thank you. I’m still processing. His counselor thinks that given the new standards he might now test onto the spectrum whereas previously he would have? I don’t know. I do know it helps me to think about why he reacts/acts do differently than others might in similar situations, and I’m thinking it might help him too? We’ll see as he meets with his counselor more and see what she recommends. Thank you so much for your input. I’m less concerned about the school work aspects and much more concerned about the relationship issues. He has a very hard time forming and retaining healthy relationships.

    • And see, you can address stuff like that with a school plan, but more importantly, it can give him some insight and direction to work in with his therapist.

      I know I saw a big shift this year with one of my kids (both of whom have struggled, in various times/ways, in relating to others) in terms of their tolerance for others not acting exactly the way they might wish. When I asked what changed, I was told, “I guess I finally realized sometimes my expectations feel reasonable to me but maybe aren’t, and getting upset about it is only going to make everything worse.” Sounds simple, but (as I’m sure you know) for this kid, HUGE. Part of that came from knowing the diagnosis/challenges and addressing them head-on.

    • Anon

      Whoops. That was supposed to read “he might not test onto the spectrum whereas previously he would have”

  • KIm

    Literally just got home from a meeting with the behavioral specialist at school for my kindergartener, and I’m also speaking as someone whose inattentive ADHD was not diagnosed until the age of 48.
    Knowledge is good.  I have always known that I was different, I have always known that some things are more difficult for me.  But now I know, that those things are not difficult due to a lack of willpower or moral fiber. And Iknow I am not alone in my struggles.  When I first read about adult ADD, I almost couldn’t turn the page without crying – something in every case study resonated with me. It was such a huge relief.
    For my kids, we talk about how our ADD brains work all the time, day in and day out, and I am constantly trying to tease out when they’re being jerks (because they are kids, and they will be,) and when they are struggling with their wiring (which is a phrase e use a lot.) I continue to research and learn how different symptoms/ reactions (emotional flooding!  forced adrenaline surge!) are playing out in our lives.  It’s exhausting, but if I can spare my children the years of damage to their self-esteem, it will be so worth it.
    And lastly – we know so much more about neurodiversity now that the labels aren’t as scary as they were even 10 years ago. Maybe he is, maybe he’s not, maybe this is something else he  is going through.  But you are teaching him not to accept unhappiness as his lot in life, and to seek help when he is, and that is valuable in and of itself.

    • *late-in-life ADHD diagnosis fist-bump*

      For me, I didn’t know I was different, I just thought I was secretly lazy or stupid and needed to work on hiding it from the people who didn’t realize. I wish I’d known as a kid.

  • Kim

    Just finished reading the link, and I have to say – Jane said it better.  You’re right, Mir, she is smart! (and fist bump back at ya.  Thanks for sharing your experience.  You  and Amalah  both have made this journey much easier for me – I don’t feel as if I’m having to blaze a trail.)

    • Agreed! Mir and Amalah are making it easier for us. Thanks for sharing your thoughts and the feedback. 🙂

  • Heidi

    Thanks for all of this, as always. (Got an 11yo gifted/PDD-NOS/ADHD mixed bag of a precious son here.) I’m always on the testing bandwagon and will accept any offer of testing we can get. It gives us so much insight into how his mind works–and also into how we can help him. The only thing I dislike about testing is the plethora of parent forms that often accompany testing; I’ve taken to making photocopies of completed forms, so when the same one is thrown at me three months later, I can refer to the earlier one for many of my answers. I also appreciate the link to discussing this issue with your child. For us, the discussion is long overdue, though I’m waiting until we’re on the brink of some further testing this spring that will likely pull together a lot of the disparate threads of diagnosis we’ve received before.